Although the story is from 2015, it raises concerns even today. Read the full story here. To summarize a Wisconsin man was on trial for murder. In an unprecedented case, the jury in the case, has found the then-40 year-old former sheriff's deputy not legally responsible for shooting to death his wife and sister-in-law because he had developed a form of dementia related to his disease.
In reality, about 50% of ALS patients can develop cognitive problems and only 10% develop a frontotemporal dementia with severe cognitive impairment. But the defendant had written a note on his phone the day before the shootings, in which he fabricated an elaborate three-way suicide pact as a cover-up. And that day, he also bought charcoal for his grill, which he subsequently lit in his house in order to commit suicide via carbon dioxide poisoning. The prosecution maintained that the actions the day before proved premeditation and couldn't have been performed by someone with cognitive disorder. Furthermore, experts on ALS say that even in patients with severe frontotemporal dementia [FTD], they have never seen acts of such violence as those committed by the ALS patient on trial.
Neurologists who work with ALS patients are confounded by the jury's decision -- that the shooter was innocent due to his neurological condition which caused him to act impulsively and irrationally. Doctors are concerned that this case could erroneously brand ALS patients as violent. They say that even with ALS patients who do suffer FTD, they have only seen docile and apathetic attitudes.
I wonder if the jury's decision had as much to do with pity, taking into account that this defendant had a short life ahead, filled with its own suffering and hardship. In a strange twist, I am in agreement with the neurologists who say that this can set a dangerous precedent -- one I know all too well. You see, I see first-hand all the time, evidence of the fear of this disease. I hear loved-ones tell me straight up that they are concerned about being around me because they "wouldn't know what to do if something happened". When I ask what "something" is, they shrug. I was recently with a group of people who held their breath every time I coughed, even though there were members of the group who coughed at least twice as much as I coughed, but nobody flinched when they did it.
It really puzzles me when some people ask me while I am eating "Are you okay?" every two minutes. The discomfort on some peoples' faces can't betray the dread and fear of this disease.
Now do we really need the fear that I will somehow fly into a sudden rage and kill everyone?
Showing posts with label MND. Show all posts
Showing posts with label MND. Show all posts
Thursday, April 6, 2017
Tuesday, February 21, 2017
New Format: New Subtitles, a Synopsis of the Last Few Weeks
I toyed with the idea of separate blogs, and that may be what ends up happening, but for now, I will introduce new features:
FROM THE BOOKSHELF -- where I talk about new and not-so-new inspiring or informative books that would be of interest to anyone who cares about health issues and/or living mindfully. If you have a relevant book you would like me to talk about, or even want to write a guest post about, let me know in comments or via email
ON THE SCREEN-- I have a serious TV habit and I love to talk about what I'm watching [which is often catch-up binge-watching]. Contact me if you have a show you would like me to check out [or would like to guest-blog about]. From time to time, I will discuss movies too.
GLOBAL GASTRONOMY/FOOD ANTHROPOLOGY -- My goal is to eat cuisine of every country on earth. I am lucky to live in New York and doubly lucky to live in Queens, the most diverse borough of New York City. And if I can't get out to eat it, I can always order it online. I am also lucky to have a few friends who are more than willing to accompany me on my culinary trip around the world. So far, we have done Brazilian, Somalian and Ethiopian, and I will soon post about those experiences. If I were to give advice to my younger self, it would be this: "Do what you love and follow your passion, and you will figure out how to make a living at it". And there was someone who also said something to the effect of "Do what you love and you will never work a day in your life". I have been lucky to have worked in the airline industry for 20 years and been able to travel to many different countries including Israel, Japan, Mexico and even South Africa. When I was a junior at SUNY Stony Brook [now called Stony Brook University], I needed to declare a major and I wanted to major in Anthropology; my favorite classes were Anthropoly 101 and Linguistics. But 1974, the prevailing question was always "How are you going to make a living?" and I couldn't come up with an answer other than "teach in a college", which elicited a response of "Oh, you're going to be a perpetual student" from my parents. Academia was viewed by the grownups in my world as a way to stay in school permanently [yeah, so?] and a way never to "grow up". So I majored in French because everybody saw me as a future United Nations translator/interpretor [did they even know how hard that is for an American girl who couldn't afford to move to Paris for at least a few years?]. Then again, I could always do what every Jewish girl was expected to do -- teach in a nice high school ["great job for a wife and mom -- you're off when the kids are off"] Anyway, there went the passion. I still haveb my passion for language, culture and food. And my taste buds will travel around the wotld and to different regions within countries.
DISABILITY ISSUES -- As a person with ALS/Lou Gehrig's Disease/ Motor Neuron Disease, it's hard to escape the fact that I am a member of a much-larger community of people with disabilities [PWDs], a minority that still has a long way to go. even 20+ years after the American with Disabilities Act [ADA] was passed in Congress.
ALS/MND NEWS :Anything related to ALS -- fundraising, research, events, clinical trials, etc.
HEALTHY AND MINDFUL LIVING: There is no cure or effective treatment -- yet. It's typical, upon receiving a grim diagnosis of any kind [especially a terminal disease], to give up and just neglect everything you might have been doing to live longer and healthier. But take it from one who's been there, done that and done a lot of damage. I was somehow led to believe that there was nothing I could do to improve my situation, and that I was in danger of losing a ton of weight; and so I interpreted that to mean I should enjoy the limited time I had left and indulge. So I ate everything I loved -- fatty foods, sweets, fast food. Much to my surprise, I gained a ton of weight and with it hypertension, high cholesterol, hypothyroidism [aka slow thyroid] and even pre-diabetes and two hospitalizations for blood clots. I needed to get back on a healthy eating track and I will share all I have learned from a lot of reaearch on nutrition. I will also review food products.
PRODUCTS AND HACKS FOR DISABLED LIVING: Anything I come across that can make life better for me, PWDa and even Seniors
MY WORLD: Finally, I will continue to share what's going on in my world of -- so far -- 13 years living with ALS/Lou Gehrig's/ MND. I can only tell what I experience. Opinions expressed here are my own and only my own. What works for me might not work for you; conversely what didn't work for me, might just work for you. Everybody's experience is different, even within the ALS/MND community. And because we are talking globally these days, mine is the American experience and I am passionate about knowing what is happening with everyone especially PWDs in all parts of the world.
One last thing: ads are welcome and also guest blog posts......ads will be paid or I am open to barter.......just contact me at my email
FROM THE BOOKSHELF -- where I talk about new and not-so-new inspiring or informative books that would be of interest to anyone who cares about health issues and/or living mindfully. If you have a relevant book you would like me to talk about, or even want to write a guest post about, let me know in comments or via email
ON THE SCREEN-- I have a serious TV habit and I love to talk about what I'm watching [which is often catch-up binge-watching]. Contact me if you have a show you would like me to check out [or would like to guest-blog about]. From time to time, I will discuss movies too.
GLOBAL GASTRONOMY/FOOD ANTHROPOLOGY -- My goal is to eat cuisine of every country on earth. I am lucky to live in New York and doubly lucky to live in Queens, the most diverse borough of New York City. And if I can't get out to eat it, I can always order it online. I am also lucky to have a few friends who are more than willing to accompany me on my culinary trip around the world. So far, we have done Brazilian, Somalian and Ethiopian, and I will soon post about those experiences. If I were to give advice to my younger self, it would be this: "Do what you love and follow your passion, and you will figure out how to make a living at it". And there was someone who also said something to the effect of "Do what you love and you will never work a day in your life". I have been lucky to have worked in the airline industry for 20 years and been able to travel to many different countries including Israel, Japan, Mexico and even South Africa. When I was a junior at SUNY Stony Brook [now called Stony Brook University], I needed to declare a major and I wanted to major in Anthropology; my favorite classes were Anthropoly 101 and Linguistics. But 1974, the prevailing question was always "How are you going to make a living?" and I couldn't come up with an answer other than "teach in a college", which elicited a response of "Oh, you're going to be a perpetual student" from my parents. Academia was viewed by the grownups in my world as a way to stay in school permanently [yeah, so?] and a way never to "grow up". So I majored in French because everybody saw me as a future United Nations translator/interpretor [did they even know how hard that is for an American girl who couldn't afford to move to Paris for at least a few years?]. Then again, I could always do what every Jewish girl was expected to do -- teach in a nice high school ["great job for a wife and mom -- you're off when the kids are off"] Anyway, there went the passion. I still haveb my passion for language, culture and food. And my taste buds will travel around the wotld and to different regions within countries.
DISABILITY ISSUES -- As a person with ALS/Lou Gehrig's Disease/ Motor Neuron Disease, it's hard to escape the fact that I am a member of a much-larger community of people with disabilities [PWDs], a minority that still has a long way to go. even 20+ years after the American with Disabilities Act [ADA] was passed in Congress.
ALS/MND NEWS :Anything related to ALS -- fundraising, research, events, clinical trials, etc.
HEALTHY AND MINDFUL LIVING: There is no cure or effective treatment -- yet. It's typical, upon receiving a grim diagnosis of any kind [especially a terminal disease], to give up and just neglect everything you might have been doing to live longer and healthier. But take it from one who's been there, done that and done a lot of damage. I was somehow led to believe that there was nothing I could do to improve my situation, and that I was in danger of losing a ton of weight; and so I interpreted that to mean I should enjoy the limited time I had left and indulge. So I ate everything I loved -- fatty foods, sweets, fast food. Much to my surprise, I gained a ton of weight and with it hypertension, high cholesterol, hypothyroidism [aka slow thyroid] and even pre-diabetes and two hospitalizations for blood clots. I needed to get back on a healthy eating track and I will share all I have learned from a lot of reaearch on nutrition. I will also review food products.
PRODUCTS AND HACKS FOR DISABLED LIVING: Anything I come across that can make life better for me, PWDa and even Seniors
MY WORLD: Finally, I will continue to share what's going on in my world of -- so far -- 13 years living with ALS/Lou Gehrig's/ MND. I can only tell what I experience. Opinions expressed here are my own and only my own. What works for me might not work for you; conversely what didn't work for me, might just work for you. Everybody's experience is different, even within the ALS/MND community. And because we are talking globally these days, mine is the American experience and I am passionate about knowing what is happening with everyone especially PWDs in all parts of the world.
One last thing: ads are welcome and also guest blog posts......ads will be paid or I am open to barter.......just contact me at my email
Tuesday, January 10, 2017
Is Calling a Person With a Disability "Inspirational", "Brave" or even "Strong" a Compliment?
Erin Tatum said it better than I ever could, in her essay for the Everyday Feminism site. Please don't let the title of the site sway you. No matter your gender or sexual orientation, this is an excellent article written by someone who has been disabled longer than I have -- since childhood or maybe even since birth. So Ms. Tatum has a different perspective than I have but that doesn't make her adult experience any different from mine. In fact, the article was forwarded to me by my friend Anthony, who is male.
How do I feel? Well, I have only been hearing these things for 13 years and not a lifetime. It really depends on who says it, and the circumstances. It means more to me when it is uttered by someone who knows me well -- sometimes. There is a woman in my building who is very religious. Every time she passes me outside, she calls me her "little angel", places her hand on my head and asks Jesus to heal me. Believe me, there are other neighbors who need that just as much or more than I do; several years ago, we had a heroin addict who was found dead on his toilet five days after he died. There is another neighbor who succumbs to schizophrenia about once a year and has to be hospitalized. I don't see my pious neighbor placing her hands on my mentally-ill neighbor's head.
I have been told more than once after expressing my sympathy for a friend's misfortune, "oh never mind me; your problems are much bigger". What an insult! What that does is to disallow me from the privilege of being a sympathetic ear and a true friend -- i.e. an equal partner in a relationship. An even bigger insult is the admission of a friend that she didn't want to tell me about her vacation because she didn't want me to "feel bad". And more than once, I have heard that other people didn't want to "hurt" me by telling me about anything good happening in their lives. To assume that I can't be happy for someone because I am disabled, is the ultimate insult. And, to treat my recent re-connection with an old flame as the elephant-in-the-room, or to tell me that "nobody wants to see you hurt"? What makes them think I am emotionally fragile because of my disability? Actually, it's quite the contrary -- I've had to put up with more rejection and abandonment in the last 13 years than all the 47 previous years as an able-bodied person. I am stronger than I've ever been.
Lastly, my posting of an article on Facebook recently, about a woman in California who was diagnosed with my disease and chose doctor-assisted suicide -- really opened my eyes. My "friends" called her "brave". All of a sudden, my choice to live wasn't the brave choice at all. A real-life friend even told me that my choice wouldn't be her "cup of tea" and that she would have chosen death, like the woman in the article. The fact that so many people would rather be dead than be me, really blew me away and made clearer their interpretations of "inspirational"
I'm sure some people will see this blog post as ungrateful. They are paying me what they consider to be compliments. Please follow the link above and read what Erin Tatum says. Compliment my hair, my new sweater, or my writing or artwork. You can tell me I'm an inspiration because I managed to lose 22 pounds despite being a wheelchair user and have limited exercise options and hypothyroidism [slow thyroid] -- I'm proud of that. But don't tell me I'm an inspiration because I choose to get out of bed every morning and do what I have always loved -- help people through my writing, and try to be a true friend and giving person. Don't assume I am so wrapped up in my own misfortune that I can't listen to that of anybody else. Most of all, don't presume that I begrudge the fortunes of other people, or -- worse yet -- that I can't hope for love, desire closeness from the opposite sex, or that my heart is any more breakable than it was when I was walking, and that somehow the wheelchair means my ego has become an easily-shattered piece of glass.
How do I feel? Well, I have only been hearing these things for 13 years and not a lifetime. It really depends on who says it, and the circumstances. It means more to me when it is uttered by someone who knows me well -- sometimes. There is a woman in my building who is very religious. Every time she passes me outside, she calls me her "little angel", places her hand on my head and asks Jesus to heal me. Believe me, there are other neighbors who need that just as much or more than I do; several years ago, we had a heroin addict who was found dead on his toilet five days after he died. There is another neighbor who succumbs to schizophrenia about once a year and has to be hospitalized. I don't see my pious neighbor placing her hands on my mentally-ill neighbor's head.
I have been told more than once after expressing my sympathy for a friend's misfortune, "oh never mind me; your problems are much bigger". What an insult! What that does is to disallow me from the privilege of being a sympathetic ear and a true friend -- i.e. an equal partner in a relationship. An even bigger insult is the admission of a friend that she didn't want to tell me about her vacation because she didn't want me to "feel bad". And more than once, I have heard that other people didn't want to "hurt" me by telling me about anything good happening in their lives. To assume that I can't be happy for someone because I am disabled, is the ultimate insult. And, to treat my recent re-connection with an old flame as the elephant-in-the-room, or to tell me that "nobody wants to see you hurt"? What makes them think I am emotionally fragile because of my disability? Actually, it's quite the contrary -- I've had to put up with more rejection and abandonment in the last 13 years than all the 47 previous years as an able-bodied person. I am stronger than I've ever been.
Lastly, my posting of an article on Facebook recently, about a woman in California who was diagnosed with my disease and chose doctor-assisted suicide -- really opened my eyes. My "friends" called her "brave". All of a sudden, my choice to live wasn't the brave choice at all. A real-life friend even told me that my choice wouldn't be her "cup of tea" and that she would have chosen death, like the woman in the article. The fact that so many people would rather be dead than be me, really blew me away and made clearer their interpretations of "inspirational"
I'm sure some people will see this blog post as ungrateful. They are paying me what they consider to be compliments. Please follow the link above and read what Erin Tatum says. Compliment my hair, my new sweater, or my writing or artwork. You can tell me I'm an inspiration because I managed to lose 22 pounds despite being a wheelchair user and have limited exercise options and hypothyroidism [slow thyroid] -- I'm proud of that. But don't tell me I'm an inspiration because I choose to get out of bed every morning and do what I have always loved -- help people through my writing, and try to be a true friend and giving person. Don't assume I am so wrapped up in my own misfortune that I can't listen to that of anybody else. Most of all, don't presume that I begrudge the fortunes of other people, or -- worse yet -- that I can't hope for love, desire closeness from the opposite sex, or that my heart is any more breakable than it was when I was walking, and that somehow the wheelchair means my ego has become an easily-shattered piece of glass.
Tuesday, December 27, 2016
On Mindfulness and The End of a Challenging Year
2016 was a difficult year for me -- at least until July 30. Over Martin Luther King weekend I rammed my foot into a large box in my apartment and broke my right tibia. Besides this event bringing to light my uncontrolled apartment clutter and the necessity of standing to keep up bone strength, the break kept me in my bed 23 hours a day for three months. When I finally emerged feom my bed in April, I knew I needed to take care of a long-standing problem with a feeding-tube that had been installed six years before. My GI doctor had been delaying removal of the tube; he was apprehensive about leaving me tube-less, despite the fact that I had been eating by mouth for the last ten years, and the tube was clogged beyond redemption -- and smelly!
So as soon as my leg healed and I was released from my prison sentence, I made an appointment with the reluctant GI MD to finally stand my ground. First I saw my primary-care physician who agreed that it was time to take definite action, and advised me to go off my Xeralto [blood-thinner] for a few days before my GI appointment. So on May 11, I rolled defiantly into my GI doc's office, and he tried to stall me again with the blood-thinner excuse; but I informed him I went off the blood-thinner several days before. It still puzzles me that my GI doc and my ALS team were reticent to remove a PEG tube that hadn't been functional in at least two years and was reeking. I said I needed the tube out NOW and out it came. The tube before that one had come out about five years earlier and the hole closed up within a few hours -- which is why people with PEG tubes are told to go to the nearest ER immediately if the tube falls out.
What followed were four endoscopic procedures to close the hole -- which I was told was a RARE occurrence. Anyway, the last procedure was performed on July 30. Until then, I had barely been able to leave the house for the amount of stomach acid and food that was pouring out from my belly, 5-6 dressing-changes daily and ruined tee shirts and bras, as well as the odor that I would take with me everywhere -- no sooner was I out of my bed from my broken leg than I was a prisoner within the four walls of my apartment. The weather was warming up and I was getting more and more frustrated. My first trip to Rockaway Beach was in early August and I felt as if half my summer had been robbed from me. Is the situation perfect now? Not by a longahot; I have a "button" covering the hole and it still lsaking. Nothing is perfect.
I learned some lessons in the past year. I learned to be more mindful and even that it's okay to stare into space or otherwise just sit still and collect my thoughts. I had a lot of time in bed to think. I have learned not to take anyone at his/her word, but to watch what they do. I have also learned that most people will not be honest with me because they are convinced that the weakness in my body translates into weakness of spirit; the opposite is true -- I am so much stronger emotionally than I have ever been. But most of all, I learned that sometimes it's the ones closest to you that can hurt the most. Most importantly, I have realized that we sometimes have expectations of certain people in our world to be there for us, but often those are the ones who are not. And I am learning to live more in the present and to forgive hurts from my past [even though I am still paying for someone who hangs onto a perceived "offense" from 20+ years ago] I have no plans for 2017 -- except to finish binge-watching all seven seasons of "Shameless". I have suffered losses -- my beloved furry companion Chelsea on July 4, and two friends who ended our association with lame excuses which I saw right through [Facebook doesn't lie -- people can be really stupid or they think I am-- after all, isn't it a given that wheelchairs mean the person sitting in them are automatically of subhuman intelligence?]
So as soon as my leg healed and I was released from my prison sentence, I made an appointment with the reluctant GI MD to finally stand my ground. First I saw my primary-care physician who agreed that it was time to take definite action, and advised me to go off my Xeralto [blood-thinner] for a few days before my GI appointment. So on May 11, I rolled defiantly into my GI doc's office, and he tried to stall me again with the blood-thinner excuse; but I informed him I went off the blood-thinner several days before. It still puzzles me that my GI doc and my ALS team were reticent to remove a PEG tube that hadn't been functional in at least two years and was reeking. I said I needed the tube out NOW and out it came. The tube before that one had come out about five years earlier and the hole closed up within a few hours -- which is why people with PEG tubes are told to go to the nearest ER immediately if the tube falls out.
What followed were four endoscopic procedures to close the hole -- which I was told was a RARE occurrence. Anyway, the last procedure was performed on July 30. Until then, I had barely been able to leave the house for the amount of stomach acid and food that was pouring out from my belly, 5-6 dressing-changes daily and ruined tee shirts and bras, as well as the odor that I would take with me everywhere -- no sooner was I out of my bed from my broken leg than I was a prisoner within the four walls of my apartment. The weather was warming up and I was getting more and more frustrated. My first trip to Rockaway Beach was in early August and I felt as if half my summer had been robbed from me. Is the situation perfect now? Not by a longahot; I have a "button" covering the hole and it still lsaking. Nothing is perfect.
I learned some lessons in the past year. I learned to be more mindful and even that it's okay to stare into space or otherwise just sit still and collect my thoughts. I had a lot of time in bed to think. I have learned not to take anyone at his/her word, but to watch what they do. I have also learned that most people will not be honest with me because they are convinced that the weakness in my body translates into weakness of spirit; the opposite is true -- I am so much stronger emotionally than I have ever been. But most of all, I learned that sometimes it's the ones closest to you that can hurt the most. Most importantly, I have realized that we sometimes have expectations of certain people in our world to be there for us, but often those are the ones who are not. And I am learning to live more in the present and to forgive hurts from my past [even though I am still paying for someone who hangs onto a perceived "offense" from 20+ years ago] I have no plans for 2017 -- except to finish binge-watching all seven seasons of "Shameless". I have suffered losses -- my beloved furry companion Chelsea on July 4, and two friends who ended our association with lame excuses which I saw right through [Facebook doesn't lie -- people can be really stupid or they think I am-- after all, isn't it a given that wheelchairs mean the person sitting in them are automatically of subhuman intelligence?]
Friday, September 23, 2016
Mourning the End of Summer: Sand in My Shoes
My late mom's favorite season was Autumn; unfortunately, I never shared that sentiment. I have always had sand in my shoes. I was born in Brooklyn, and both of my parents grew up on Coney Island. I was taken to Coney Island in the summer to join my extended family -- mostly from my Dad's side [my maternal relatives are Austrian with fair skin and prone to sunburn] but sometimes we would be joined by my mom's Coppertone-slathering, umbrella-sheltered family. Somewhere in my dad's house are black-and-white childhood photos of me in a one-piece on a beach blanket and home movies converted to a cassette[sadly VCR -- not yet put on DVD] of an iconic 50s me with white ice cream from a melting pop dripping down my face, and a confused "I can't lick fast enough; what am I gonna do?" look of total perplexion on my face.
Later, when we moved from Bensonhurst to Sheepshead Bay in Brooklyn, and my paternal grandparents moved to the Nostrand Projects right on the next block from the Sheepshead Houses [an adjoining NYCHA "project"], we frequented quieter Manhattan Beach. Manhattan Beach wasn't in Manhattan; it was on the same strip of Atlantic Ocean as Coney Island to the east. It was quieter and wasn't "bad" like Coney Island was starting to become. "Bad" was another way of saying that there were increasing numbers of people of color -- African-Americans and Puerto Ricans [back then, anybody who spoke Spanish was Puerto Rican].
When I was 11, we moved to Long Beach, Long Island and my fate was sealed-- I would forever have sand in my shoes. I studied for my end-of-year New York State Regents exams in the sun on a beach blanket. My teenage years were filled with beach bonfires and all kinds of beach parties. I told my mom I wanted to one day have a wedding on the beach with all the guests in flip-flops; she replied that I was a crazy hippie. When I was deciding on a town in France to spend a summer studying and perfecting my French, it's no accident that I chose Boulogne-sur-Mer on the English Channel, where I attended classes in the morning and headed for the beach every afternoon. My foray into living out of state was a four-year stint in Los Angeles, never far from a beach.
Lately, my beach stomping-grounds has become Rockaway, Queens, New York. A once-bustling, then-crumbling stretch of the Atlantic which is part of the New York City beaches. Rockaway is reachable by subway and MTA bus, and -- like all the city beaches-- free to visit. An interesting thing happened after Superstorm Sandy; Rockaway experienced a revival of sorts, largely thanks to a huge contingent of young hipster artsy types from Brooklyn and Manhattan.
My favorite Rockaway "poison" -- a Michelada which is a Modelo
Mexican beer with lime, clam juice and tomato juice in a glass rimmed
with coarse salt and spices. On the plate is ceviche [raw fish "cooked"
in lime] over a disc of quinoa
We accidentally discovered 97th Street after I read an article online about fish tacos being sold near the Rockaway boardwalk, and immediately was brought back to fish tacos I lunched on every day on a trip to Ixtapa, Mexico in the late 1990s. I dragged my friend Louise one afternoon on a mission to Rockaway Tacos and discovered our new beach obsession. That was late July, 2014 and we went back every weekend for the remainder of that summer. And during Summer, 2015. This 2016 summer, I was robbed of my July, dealing with my endoscopies and belly-hole issues when it was tough to leave the house. The 97th Street boardwalk has become my second home, along with the Low Tide Bar and all the various food concessions that serve up everything from ceviche [fish cooked in lime] and pierogies to BBQ pulled pork and veggie juices. And the most wonderful thing is the beach "mats" they lay down so that wheelchairs can go partially on the sand. And I read [although sadly I don't have anyone willing and able to help me], that you can rent beach wheelchairs [with big wheels] that someone can push me in, on the actal sand and in the water. Yes, I need someone young and/or strong who is willing to help me rent this and push me.
I am dreaming of a permanent or even semi-permanent [summer] home/rental in the Rockaways. I am determined to make something like that happen. For right now, I am mourning the summer and trying to make my fall and winter productive enough to make some dreams come true for next year. In the meantime, let's hope for no broken bones, nor belly holes spouting stomach acid or half-digested food.
Later, when we moved from Bensonhurst to Sheepshead Bay in Brooklyn, and my paternal grandparents moved to the Nostrand Projects right on the next block from the Sheepshead Houses [an adjoining NYCHA "project"], we frequented quieter Manhattan Beach. Manhattan Beach wasn't in Manhattan; it was on the same strip of Atlantic Ocean as Coney Island to the east. It was quieter and wasn't "bad" like Coney Island was starting to become. "Bad" was another way of saying that there were increasing numbers of people of color -- African-Americans and Puerto Ricans [back then, anybody who spoke Spanish was Puerto Rican].
When I was 11, we moved to Long Beach, Long Island and my fate was sealed-- I would forever have sand in my shoes. I studied for my end-of-year New York State Regents exams in the sun on a beach blanket. My teenage years were filled with beach bonfires and all kinds of beach parties. I told my mom I wanted to one day have a wedding on the beach with all the guests in flip-flops; she replied that I was a crazy hippie. When I was deciding on a town in France to spend a summer studying and perfecting my French, it's no accident that I chose Boulogne-sur-Mer on the English Channel, where I attended classes in the morning and headed for the beach every afternoon. My foray into living out of state was a four-year stint in Los Angeles, never far from a beach.
Lately, my beach stomping-grounds has become Rockaway, Queens, New York. A once-bustling, then-crumbling stretch of the Atlantic which is part of the New York City beaches. Rockaway is reachable by subway and MTA bus, and -- like all the city beaches-- free to visit. An interesting thing happened after Superstorm Sandy; Rockaway experienced a revival of sorts, largely thanks to a huge contingent of young hipster artsy types from Brooklyn and Manhattan.
My favorite Rockaway "poison" -- a Michelada which is a Modelo
Mexican beer with lime, clam juice and tomato juice in a glass rimmed
with coarse salt and spices. On the plate is ceviche [raw fish "cooked"
in lime] over a disc of quinoa
We accidentally discovered 97th Street after I read an article online about fish tacos being sold near the Rockaway boardwalk, and immediately was brought back to fish tacos I lunched on every day on a trip to Ixtapa, Mexico in the late 1990s. I dragged my friend Louise one afternoon on a mission to Rockaway Tacos and discovered our new beach obsession. That was late July, 2014 and we went back every weekend for the remainder of that summer. And during Summer, 2015. This 2016 summer, I was robbed of my July, dealing with my endoscopies and belly-hole issues when it was tough to leave the house. The 97th Street boardwalk has become my second home, along with the Low Tide Bar and all the various food concessions that serve up everything from ceviche [fish cooked in lime] and pierogies to BBQ pulled pork and veggie juices. And the most wonderful thing is the beach "mats" they lay down so that wheelchairs can go partially on the sand. And I read [although sadly I don't have anyone willing and able to help me], that you can rent beach wheelchairs [with big wheels] that someone can push me in, on the actal sand and in the water. Yes, I need someone young and/or strong who is willing to help me rent this and push me.
I am dreaming of a permanent or even semi-permanent [summer] home/rental in the Rockaways. I am determined to make something like that happen. For right now, I am mourning the summer and trying to make my fall and winter productive enough to make some dreams come true for next year. In the meantime, let's hope for no broken bones, nor belly holes spouting stomach acid or half-digested food.
Wednesday, September 7, 2016
Followup on Views About Assisted Suicide and End of Summer
So I posted the story on Facebook that I talked about in the last blog update. To recap: A woman with ALS threw a big [arty for 30-some-odd of her closest friends and then went through a doctor-assisted suicide [which was recently legalized in California]. Granted, she was a performance-artist and it's not clear from the article which abilities she had lost. I'm sure if she lost use of her hands, she probably didn't see the use in going on. I could count a hundred-and-one things I had to give up when I got this disease. Anyway, it's a controversial issue among the disability community. But I can't go into that. But what I can attest to, are the commentas on my Facebook posting. This is in an atmosphere of full-disclosure because everyone knew that I posted it, and they knew my situation. Most people thought the woman in the article was brave to do what she did. A very old friend of mine commented with food for thought: he said that good friends should be around the person with the disease all throughout, and not just show up to party with her to say thei goodbyes. I agree with him, but on the other hand, at least they partied with her while she was still alive and not just show up to cry about how much they will miss her when she's gone. Another old friend expressed in so many words that I was "brave" for going on and fighting, but she would have wanted to die. In other words, I wa shocked at how many people basically feel that they would rather be dead than in my situation. Which leaves me very grateful that -- despite all the pain I have been through -- I have managed to find joy in a world of ABILITIES, rather than buy into helplessness. I know I have some people around me that have bought into my perceiveed in-abilities; the invitations don't come anymore and the attempts to socialize have all but disappeared except for a few exceptional people. There are discomfiting looks when I mention traveling and sex, even though disabled people travel all the time, and even have sex. I have re-connected with a gentleman from my past to whom I am extremely attracted; the looks on friends' faces when I mention this, show their awkwardness. One friend said she didn't want me to "get hurt". Was she so concerned when I was able-bodied? If anything, I am so much stronger emotionally than I ever was in my former life. Another friend says she "censors" her talk because she doesn't want me to hear about anything happy in her lefe; other friends tell me that they don't want to tell me about thir probems, so as not to "burden" me. This last subject was another way to see how other peoples' minds work, and I must say I am sad for them and I hope they never have to deal with half of what I do. I realize how many people around me are weak and even ignorant. Society has to do a better job of preparing people to deal with people like me, Just sayin' 'Nuff said.
Anyway, the end of summer has set in, even though I will continue to go to Rockaway Beach as many weekend days as possible through September. We don't even have to go into the water, or even on the sand; we just bring reading material. Our base has become Beach 97th Street on the newly-rebuilt boardwalk. Rockaway took quite a hit in Superstorm Sand, as did my hometown of Long Beach. Both towns have rebuilt their boardwalks, which were destroyed. Long Beach's boardwalk was reconstructed by funds raised largely by hometown boy Billy Crystal [the comedian/actor -- he was a baseball star at my school who graduated the year before I entered high school -- his older brother Joel was my middle-school art teacher] Rockaway is a New York City beach. For those of you who have never been to New York City, we have beautiful city beaches along the Atlantic Ocean, and they are all free. These boardwalks are more like cement-walks now -- the old wooden boards are replaced by more sturdy material that will be better able to withstand bad storms. In the Long Beach Library, I was always mesmerriaed by photos of the old boardwalk constuction in the early 20th eentury, especially the pre-PETA photos of the use of elephants to transport the heave wood boards.
Rockaway has gone through a resurgence of sorts. Once a burgeoning vacation community in the late 19th century and early-to-mid-1900s, it fell into ruin and decay by the late 1960s. Rockaway Playland Amusement Park closed in the 1970s and the ummer bungalowa were rented out year-round to very poor families. Most of the other families were blue-collar workers of Irish descent; in fact, Rockaway families suffered many lossses during the 9/11 attacks because there was suck a large concenetration of police and firefighter first responders.
In the top photo, you can see ceviche [raw fish "cooked" ibn lime] on a disk of quinoa with seasonings. Very delicious and healthy. In the cup is a drink called "Michelada". This is a popular drink at Mexican resorts. They rim the cup with sea-salt and hot pepper and pour in tomato and clam juice. They then pour in about 1/2 a can of Modelo beer and you just keep pouring in the rest of the beer as you drink down. It's delicious and refreshing and also has plenty of ice. It's kind of like a beer version of a Bloody Mary.
I am not clear about when Roclaway suddenly became cool and hip, but I suspect that Superstorm Sandy had something to do with it. One summer afternoon last July, Louise and i saw an article online about a place specializing in fish tacos and decided to check it out. For some reason, that part of the boardwalk was intact so we wandered on. Once on the boardwalk, we discovered an additional structure of food outlets and they were serving up cuisine beyone hotdogs and burgers and fries. There was a juice bar, several outlets serving up cevicjhe [fish cooked in lime -- Latinos' answer to sushi], BBQ and other delicacies. The people hanging out there seemed to be young hipsters and their babies. There was an eclectic blend of music playing and we felt very much at home. It was already the end of July and we made a point of going there every Saturday through to the end of September. I havd always had sand in my shoes and live for Summer. Rockaway has become my second home in the summer. I'm a sucker for the salt air and the sound of crashing waves, I've had many kisses on the beach; it is the stuff of all my dreams. I always dreamed of getting married on the beach, nd refuse to let go of that dream. I see a lot of raised eyebrows and hear a lot of tooth-sucking in pity. Nobody wants to see me "get hurt". I can still fall in love and I can even have sex, although my partner would have to be patient with helping me move my body into position. I'm not ready for assisted suicide as long as there are beaches.
Anyway, the end of summer has set in, even though I will continue to go to Rockaway Beach as many weekend days as possible through September. We don't even have to go into the water, or even on the sand; we just bring reading material. Our base has become Beach 97th Street on the newly-rebuilt boardwalk. Rockaway took quite a hit in Superstorm Sand, as did my hometown of Long Beach. Both towns have rebuilt their boardwalks, which were destroyed. Long Beach's boardwalk was reconstructed by funds raised largely by hometown boy Billy Crystal [the comedian/actor -- he was a baseball star at my school who graduated the year before I entered high school -- his older brother Joel was my middle-school art teacher] Rockaway is a New York City beach. For those of you who have never been to New York City, we have beautiful city beaches along the Atlantic Ocean, and they are all free. These boardwalks are more like cement-walks now -- the old wooden boards are replaced by more sturdy material that will be better able to withstand bad storms. In the Long Beach Library, I was always mesmerriaed by photos of the old boardwalk constuction in the early 20th eentury, especially the pre-PETA photos of the use of elephants to transport the heave wood boards.
Rockaway has gone through a resurgence of sorts. Once a burgeoning vacation community in the late 19th century and early-to-mid-1900s, it fell into ruin and decay by the late 1960s. Rockaway Playland Amusement Park closed in the 1970s and the ummer bungalowa were rented out year-round to very poor families. Most of the other families were blue-collar workers of Irish descent; in fact, Rockaway families suffered many lossses during the 9/11 attacks because there was suck a large concenetration of police and firefighter first responders.
In the top photo, you can see ceviche [raw fish "cooked" ibn lime] on a disk of quinoa with seasonings. Very delicious and healthy. In the cup is a drink called "Michelada". This is a popular drink at Mexican resorts. They rim the cup with sea-salt and hot pepper and pour in tomato and clam juice. They then pour in about 1/2 a can of Modelo beer and you just keep pouring in the rest of the beer as you drink down. It's delicious and refreshing and also has plenty of ice. It's kind of like a beer version of a Bloody Mary.
I am not clear about when Roclaway suddenly became cool and hip, but I suspect that Superstorm Sandy had something to do with it. One summer afternoon last July, Louise and i saw an article online about a place specializing in fish tacos and decided to check it out. For some reason, that part of the boardwalk was intact so we wandered on. Once on the boardwalk, we discovered an additional structure of food outlets and they were serving up cuisine beyone hotdogs and burgers and fries. There was a juice bar, several outlets serving up cevicjhe [fish cooked in lime -- Latinos' answer to sushi], BBQ and other delicacies. The people hanging out there seemed to be young hipsters and their babies. There was an eclectic blend of music playing and we felt very much at home. It was already the end of July and we made a point of going there every Saturday through to the end of September. I havd always had sand in my shoes and live for Summer. Rockaway has become my second home in the summer. I'm a sucker for the salt air and the sound of crashing waves, I've had many kisses on the beach; it is the stuff of all my dreams. I always dreamed of getting married on the beach, nd refuse to let go of that dream. I see a lot of raised eyebrows and hear a lot of tooth-sucking in pity. Nobody wants to see me "get hurt". I can still fall in love and I can even have sex, although my partner would have to be patient with helping me move my body into position. I'm not ready for assisted suicide as long as there are beaches.
Tuesday, August 16, 2016
Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in Califiornia
A number of people have forwarded this article and video to me
Anyway, let me summarize:
A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life. She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law. California now joins Oregon in allowing doctor-assisted suicide.
Betsy Davis -- the woman in the article -- looked vibrant and still beautiful. Who knows how much longer she would have had if she didn't die when she did? I thought of where my head was at, three years after diagnosis, and I was pretty despairing myself. My disease had progressed pretty fast in the first few years. I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible. I am blessed with the ability to use my hands, which enables me to use the computer, if not, keeping me from dropping a lot of things. At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here. Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate. Who knew my progression would slow down almost to a standstill? I have been very lucky. If I chose doctor-assisted suicide at that point, I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.
And then there is that word -- "suffering" -- which has been repeated a few times in the article. Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term. Am I suffering? The short answer is yes -- sometimes. Did I suffer before ALS -- I would have to answer a louder and more resounding yes. I despaired after broken relationships, broken bones, lost employment, deaths of loved ones. I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on. I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die. If New York had a law legalizing doctor-assisted suicide, I could have ended it right then. I could move to California or Oregon and do it right now. I choose not to -- right now. I can't speak for anyone else.
Without getting into religious beliefs, we all have choices. Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children? I once knew a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance? Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds. I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.
Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident. She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived. "Better dead than confined to a wheelchair" she added. I cringed because I knew sooner or later I would be reliant on a wheelchair myself. Does she think I am better off dead now? I don't know; I don't think so. If I reminded her of what she said that day, I'm sure it would embarrass her. Who knows if I would have agreed with her a decade before? We all live in our own little worlds and sometimes never imagine what could happen. When we think we could never go on, we do. Ronald Reagan was aganst stem-cell research so I'm told. Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.
My party of goodbyes has happened more gradually over 12 1/2 years. In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye. I had friends and family who came by often and stopped, either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation. And I am thankful for some people I would never have met and gotten close to, if I hadn't had ALS, and for the people who stuck by me all the way. It's true that in times of difficulty, you find out who your solid friends are. I had hundreds of people in my life because of my two careers and my volunteer activities. By necessity, I have weeded out a lot of toxic people. I don't need a party and for now I choose to hang out a while longer.
Probably the most important reason I continue to thrive is my care. I not only still live by myself in my own apartment but I am able to hire, fire and schedule my own personal assistants through a system called "CDPAP -- Consumer-Directed Personal Assistant Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CD-PAP all throughout the state of New York and in some other states as well. This not only keeps me out of a nursing home, but relieves me of the constraints imposed by many home-care agencies -- like sending strange aides at their whim and even restricting how far away from home they are allowed to go with their consumers [patients]. I have had the same four aides for a decade or more and they are like family to me. They cover for each other in case of illnesses, vacations and emergencies. If not for CDPAP, I am sure I would feel differently about my situation and the will to go on.
Anyway, let me summarize:
A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life. She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law. California now joins Oregon in allowing doctor-assisted suicide.
Betsy Davis -- the woman in the article -- looked vibrant and still beautiful. Who knows how much longer she would have had if she didn't die when she did? I thought of where my head was at, three years after diagnosis, and I was pretty despairing myself. My disease had progressed pretty fast in the first few years. I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible. I am blessed with the ability to use my hands, which enables me to use the computer, if not, keeping me from dropping a lot of things. At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here. Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate. Who knew my progression would slow down almost to a standstill? I have been very lucky. If I chose doctor-assisted suicide at that point, I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.
And then there is that word -- "suffering" -- which has been repeated a few times in the article. Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term. Am I suffering? The short answer is yes -- sometimes. Did I suffer before ALS -- I would have to answer a louder and more resounding yes. I despaired after broken relationships, broken bones, lost employment, deaths of loved ones. I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on. I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die. If New York had a law legalizing doctor-assisted suicide, I could have ended it right then. I could move to California or Oregon and do it right now. I choose not to -- right now. I can't speak for anyone else.
Without getting into religious beliefs, we all have choices. Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children? I once knew a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance? Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds. I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.
Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident. She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived. "Better dead than confined to a wheelchair" she added. I cringed because I knew sooner or later I would be reliant on a wheelchair myself. Does she think I am better off dead now? I don't know; I don't think so. If I reminded her of what she said that day, I'm sure it would embarrass her. Who knows if I would have agreed with her a decade before? We all live in our own little worlds and sometimes never imagine what could happen. When we think we could never go on, we do. Ronald Reagan was aganst stem-cell research so I'm told. Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.
My party of goodbyes has happened more gradually over 12 1/2 years. In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye. I had friends and family who came by often and stopped, either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation. And I am thankful for some people I would never have met and gotten close to, if I hadn't had ALS, and for the people who stuck by me all the way. It's true that in times of difficulty, you find out who your solid friends are. I had hundreds of people in my life because of my two careers and my volunteer activities. By necessity, I have weeded out a lot of toxic people. I don't need a party and for now I choose to hang out a while longer.
Probably the most important reason I continue to thrive is my care. I not only still live by myself in my own apartment but I am able to hire, fire and schedule my own personal assistants through a system called "CDPAP -- Consumer-Directed Personal Assistant Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CD-PAP all throughout the state of New York and in some other states as well. This not only keeps me out of a nursing home, but relieves me of the constraints imposed by many home-care agencies -- like sending strange aides at their whim and even restricting how far away from home they are allowed to go with their consumers [patients]. I have had the same four aides for a decade or more and they are like family to me. They cover for each other in case of illnesses, vacations and emergencies. If not for CDPAP, I am sure I would feel differently about my situation and the will to go on.
Thursday, August 4, 2016
Endoscopic Procedures #2, #3 amd #4,Trying to seal my abdominal PEG site fistula, and a saga to try my sanity
So I would like to say that my first endoscopic procedure on June 30 to stitch up the fistula left by my PEG removal, was a success. I would like to add that six weeks of disgusting and smelly emanations had finally come to an end, and I could start the enjoyment of my favorite season of the year. But, if you read the title of this entry, you already know that I can't say any of those things, and so, by July 2, I was once again a very unhappy camper. Oh sure, I was doing the "happy dance" until about the morning of July 2, when I realized that the oozing site was more than just a healing process. I emailed both of the GI doctors in despair. I had no intention of repeating the uncomfortable experience again. My throat was sore from having a tube going down it, into my belly. And contrary to the anesthesiologist's promise that I probably would remember little to nothing that happened on that table, I remembered everything.
So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat. Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember. So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat. When I came home, my throat hurt as much as my 1986 bout with strep, during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop. Well, after two days, the throat pain subsided, but the leak resumed. The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"
So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3. I figured if I had survived the first two, I could survive a third. I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars. She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times. This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that. I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp.
The doctor was confident that the third time was the charm. And it was -- for two days. So we could be doubly sure the stitches would hold, this time I stayed on clear liquids for the rest of that day and liquids the whole next day. After a 2-day fast, my body was not good at accepting solid food again and the third evening, I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch. Before long, I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times. There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again. My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.
So, having not been as traumatized after #3, I was ready for #4. But this time, I was told the two GI docs were putting their heads together and "thinking outside the box". Uh-oh, I thought, now we're getting creative!! The next day I was presented with two possible "solutions". One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button". Both devices would have something showing on the surface of my belly; the cardiac device would be flatter, and the Mic-key would have a piece protruding about 1cm [roughly a half-inch]. The downside of the cardiac device would be its permanency -- it could never be removed. In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]
On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure. Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am. We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet, but Au Bon Pain was. So Cheryl was able to have a cup of coffee. The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!
The doctor showed me the Mic-key button and indicated which part would be above the belly. I approved -- what else could I do? This time, they managed to sedate me enough that I didn't remember a thing, Miraculously, there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch. So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever. Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.
Is it perfect? Not by a long shot. I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks. But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops. I can leave the house and wear shirts and blouses pretty close-fitting. For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly. And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.
So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat. Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember. So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat. When I came home, my throat hurt as much as my 1986 bout with strep, during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop. Well, after two days, the throat pain subsided, but the leak resumed. The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"
So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3. I figured if I had survived the first two, I could survive a third. I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars. She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times. This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that. I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp.
The doctor was confident that the third time was the charm. And it was -- for two days. So we could be doubly sure the stitches would hold, this time I stayed on clear liquids for the rest of that day and liquids the whole next day. After a 2-day fast, my body was not good at accepting solid food again and the third evening, I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch. Before long, I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times. There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again. My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.
So, having not been as traumatized after #3, I was ready for #4. But this time, I was told the two GI docs were putting their heads together and "thinking outside the box". Uh-oh, I thought, now we're getting creative!! The next day I was presented with two possible "solutions". One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button". Both devices would have something showing on the surface of my belly; the cardiac device would be flatter, and the Mic-key would have a piece protruding about 1cm [roughly a half-inch]. The downside of the cardiac device would be its permanency -- it could never be removed. In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]
On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure. Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am. We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet, but Au Bon Pain was. So Cheryl was able to have a cup of coffee. The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!
The doctor showed me the Mic-key button and indicated which part would be above the belly. I approved -- what else could I do? This time, they managed to sedate me enough that I didn't remember a thing, Miraculously, there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch. So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever. Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.
Is it perfect? Not by a long shot. I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks. But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops. I can leave the house and wear shirts and blouses pretty close-fitting. For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly. And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.
Sunday, July 10, 2016
Endoscopy to Close PEG Tube Site-- Call me "Deep Throat"
So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site. To recap, had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow. In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia. In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010. By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site. It was also ruining my shirts and blouses with stains and emitting an offensive odor. My GI doctor and I decided it was time for the tube to come out and let the hole close up.
As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed. Well, mine didn't closeup, much to my chagrin. My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed. Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.
I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge]. We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer. Then we entered the Endoscopy Suite inner sanctum at about 12:15. The nurses were all cheerful and pleasant. Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in. My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team. They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar. They would go with a lighter anesthesia and shoot albuterol into my throat to numb it. I would be awake during the procedure but probably not remember much.
Well, I remember everything. It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern. Good job!!" I'm not clear what the "job" was, except not passing out and not screaming. All I know is, I was relieved when I heard them all tell me we were done.
The aftermath was a sore site which bled a little and a very sore throat for about three days. Oh, and I lost my voice for about the three days that my throat hurt. All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now. It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles. I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content. Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.
It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined. And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].
As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed. Well, mine didn't closeup, much to my chagrin. My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed. Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.
I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge]. We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer. Then we entered the Endoscopy Suite inner sanctum at about 12:15. The nurses were all cheerful and pleasant. Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in. My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team. They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar. They would go with a lighter anesthesia and shoot albuterol into my throat to numb it. I would be awake during the procedure but probably not remember much.
Well, I remember everything. It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern. Good job!!" I'm not clear what the "job" was, except not passing out and not screaming. All I know is, I was relieved when I heard them all tell me we were done.
The aftermath was a sore site which bled a little and a very sore throat for about three days. Oh, and I lost my voice for about the three days that my throat hurt. All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now. It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles. I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content. Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.
It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined. And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].
Tuesday, May 10, 2016
Tibia mostly healed, Physical Therapy, out of bed, foot blister slowing up recovery, sadness and loneiness
Well I am out of bed and I would like to stay out of bed, except for sleep time, that is. I am reading that it takes up to a full year for a tibia to fully heal, but three months to be able to bear weight. After two months, my orthopedist gave me a boot to put on, but I couldn't stand with it. Something was going on with the bottom of my right foot [the side of the fractured tibia], but I didn't know what it was. Well, I was distraught thinking that I still couldn't stand and in the back of my mind I thought maybe I would never be able to stand again.
The next morning, the aide on duty went to clean the bottom of my foot and noticed a blister, right in the spot where the cast ended. So it seems that the rough edge of the cast was apparently rubbing against the skin. I had an appointment already planned that week with my primary doctor and she looked at it, told me to see a podiatrist, and gave me a light antibiotic in case it was infected. The day I finished the antibiotic, I saw the podiatrist who said the blister was not infected despite th pain and there was nothing serious doing under the blister. But it would take a few weeks to heal. He lanced and drained it and I had weekly visits for the next month until it totally healed. Needless to say, I was in bed an additional month.
Finally, I am standing almost as well as I did before the injury but I have home physical therapy to exercise the leg to strengthen the joints around the tibia like the ankle and knee. When you're in bed for more than three months, the muscles atrophy and have to be "woken up" again. All in all, I was lucky that this happened during the cold winter and apart from doctor visits, I didn't have to go outside. Going outside for the doctor was difficult, since my toes were exposed and sticking out of the cast. One time, we missed Access-a-Ride because we were fighting with a too-small elevator coming out of the orthopedist's office. There was no courtesy phone call; she just pulled away right in front of my aide. And when the aide ran after and caught up to her at a red light, she [the driver] refused to come back around or wait. So we walked from 66th and Second Avenue to 60th Street to catch the Q60 MTA bus and my toes froze. Luckily we were near the Q60 that goes from Manhattan to Queens. But then we had to walk/roll from the bus stop to my apartment, toes exposed again.
There's nothing that gets you thinking and reflecting more on your life than being stuck on your back in bed. And there is nothing lonelier. I really found out who my friends were and they were few, but I consider myself lucky. More on that later. I also have certain emotional addictions [more like obsessions] that reared their ugly heads during this time, and I had to pull myself off social media in order to not feed into those addictions. Social media can be very dangerous for me, especially when I can see the wonderful fun other people have and how they are surrounded by loving friends and family. Not that I wasn't lonely in my healthy able-bodied days, but I could get out and do something about it.
Tuesday, April 12, 2016
Month three of broken tibia and blister woes and wheelchair cushion problems
So it's coming in on the home stretch of the three months of recuperation from my tibia fracture. I enter to my two month follow up at the orthopedist and he removed the shorter cast? Which went below the knee. This was an improvement on the first cast, which went well above the knee so imagine my delight when they cut off the second cast and gave me a boot thing aka soft cast -- and told mr I could stand using this new improvement. I couldn't wait to get home and do all the things that the ability to stand, allowed me to do.
That happiness was short-lived, however. I tried to stand and the leg with the broken tibia produced the most blood-curdling yelp when I tried. Something was going on with the bottom of my foot and it wasn't good. Was it something wrong with the bottom of the boot? I had no idea. Not to mention that the good leg wasn't perfect either. You see, after two months of lying in bed, my muscles had atrophied and needed building up again. I realized how important it is for me to have physical therapy. Suddenly, my aide looked at the bottom of my foot and saw a huge cyst-like blister. Oh hell, I thought. Great!! I happened to have an appointment with my internist a few days later and she looked at it and said it seemed infected nd gave me a one-week round of Amoxicillin. She doesn't like to give antibiotics recklessly and for that I love her. So I loaded up on probiotic capsules and drank kombucha to compensate. And I made an appointment with Aadvanced Foot Care, who had solved my plantar fascitis many years ago. The podiatrist determined I didn't have an infection, but a pus-filled blister. He lanced it and told me to put bacitracin on it and see him in a week. It improved but still hurt. I went yesterday again and he said I could try putting my weight on it. So when I came home and had to use the commode, I decided to try. My aide had trepidation, but I did it!! It wasn't great and my leg muscles have atrophied somewhat with three months of bed-rest. I have a prescription for physical therapy to help me build the muscle, and I also found a website with exercises for a post-fractured tibia. I have to decide if I want to go outside for PT or have home PT. I have had both and each has its pros and cons.
Then there is my wheelchair cushion. When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important. An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities]. I recently got a Roho cushion, which has waffle-like compartments filled with air. It has to be regularly inflated to ensure enough comfort. Well, one morning, we found the valve on the floor; it had come off the cushion. A Roho cushion that cannot be inflated is useless. In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable. So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion. I thought about buying a standby extra cushion -- $350.00 -- I don't think so. The ALS Association will come to my rescue some time tomorrow with a loaner cushion. Their loan closet has saved me many many times. One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks. A real pain!! Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed. Instead, I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT]. Below is a picture of a Roho cushion. You can see the "waffle" air compartments. It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores. It is great for old folks who might not have a lot of butt padding and compromised back muscles.
Then there is my wheelchair cushion. When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important. An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities]. I recently got a Roho cushion, which has waffle-like compartments filled with air. It has to be regularly inflated to ensure enough comfort. Well, one morning, we found the valve on the floor; it had come off the cushion. A Roho cushion that cannot be inflated is useless. In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable. So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion. I thought about buying a standby extra cushion -- $350.00 -- I don't think so. The ALS Association will come to my rescue some time tomorrow with a loaner cushion. Their loan closet has saved me many many times. One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks. A real pain!! Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed. Instead, I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT]. Below is a picture of a Roho cushion. You can see the "waffle" air compartments. It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores. It is great for old folks who might not have a lot of butt padding and compromised back muscles.
Friday, August 21, 2015
An open letter to my [Former] Primary Care Physician
Dear Dr. R,
I think you may notice very soon (if you haven't already) that I have stopped coming to your practice. Or maybe you will never notice and/or won't care (or maybe will even be relieved to not have to handle my objections anymore). Youbs
However, I feel compelled to tell you why I had to change doctors for the second time in three years. Somehow I think you won't really care, although nowadays you really should. Let me tell you why you should care about your patients and what they think. First, there are so many doctors in our neighborhood. We don't have to put up with substandard care in Central Queens, because there are at least 1,000 doctors within a 3-mile radius, from which we can choose. Secondly, in this era of social media, it's easy to let everyone know of our experiences. As a matter of fact, recently on Facebook, a woman in our neighborhood contacted me and asked for a general practitioner recommendation. I promptly told her to stay away from you, at which time she informed me that she had just made an appointment with your practice and when she heard my feedback, cancelled the appointment with you and booked one with another practitioner on your premises.
Let me tell you the reasons I have changed doctors. I had a very nice general doctor at the other end of Queens Blvd but since she had moved from spacious quarters at 97-77 Queens Blvd, which she shared with another doctor, she was less able to provide me with quality care. Her exam rooms in her new location were minuscule and there was no room for my wheelchair. She came up with a solution to give me the last appointment on Wednesday and I had to wait for all the other patients to leave so she could examine me in her waiting area in full view of her [female] office staff. Despite this being a semi-private arrangement, it still wasn't ideal. But at least this doctor listened to me. However, she often rushed me; I sometimes smelled the scent of a pizza which had been dropped off earlier by a pharmaceutical rep, and I could understand her hunger. As a matter of fact, I had to fast before every appointment for my bloodwork and I felt like going in the back to steal the pizza; thankfully, my wheelchair couldn't fit in the room where the pizza sat. You see, despite her giving me an 11:45 appointment, she was always behind-schedule and by the time she got to me, it was usually about 2:00pm. I stuck with her until she got sloppy with callbacks and her staff member told me she would call right back one afternoon, and I learned later that she had already left for the day and didn't receive my message about a medicine refill until three days later when she returned from her weekend. I hate liars, so decided it was time to switch.
I went from the frying pan into the fire. Even though your office is right around the corner from my apartment, I was worse off with your practice. First, I quickly learned of your unavailability between appointments, even to pharmacists. My pharmacist -- whom I have been using for 30 years -- complains that it is nearly impossible for him to call for a refill on a prescription. Once, he was so frustrated that he told me he had given up. So I sent my aide in person; she waited nearly an hour in your waiting area before she could even get the message to you. And then you told her I had to make an appointment to come see you in order to get the refill. WHAT?? I had just seen you three weeks before so why did I have to see you again just to get a refill? You never return phone calls, and this concerns me. How could I have any kind of relationship with a doctor who doesn't return phone calls?
I happen to be a wheelchair user and can barely fit into your exam rooms. Your "practice-within-a-practice" used to be a furniture store. The practice owner took a large open space and built exam rooms barely big enough for a doctor and her patient, let alone a wheelchair. For an establishment which opened post-ADA [American with Disabilities Act of 1990], this is unacceptable.
What is even more unacceptable is the fact that you insisted on GIVING ME A BREAST EXAM IN THE HALLWAY!! You insisted that "nobody is looking" and was extremely annoyed when I expressed my displeasure. And, speaking of breasts, why did it enrage you when I asked you for a prescription that I could use for a mammogram at Columbia Presbyterian Medical Center? I have been going there for the last 20 years, and they are the only facility with a WHEELCHAIR-ACCESSIBLE MAMMOGRAPHY MACHINE !! And yet, when you handed me a prescription for a local facility and I said I wanted to go to Columbia, you were positively exasperated. Did I ruin a kickback that you receive from the local facility? If so, I am sorry because I know doctors don't make as much money as they used to. Oh, and I did have that mammogram appointment in March but when I sent my aide to your office for the prescription, you refused to give it to her unless I came in. Funny how you told me after my last appointment "see that you don't come back before having your mammogram." and now you won't give me the prescription until I come in. What???!!!
But, my own exasperation reached a peak three months ago during my last visit. I waited TWO AND A HALF HOURS in the waiting area until you called me. Then, not one gesture of apology passed your lips, for having an 11:30 appointment and not seeing you until 2pm. Might I remind you that I was fasting because I was having blood work? By the time you examined me, I felt like I was going to faint, and you asked me why I couldn't breathe strongly enough when you examined my lungs. How many times have I reminded you that fatigue is a hallmark of ALS, as well as weak breathing.? Once again, you told me I should be blowing up balloons for exercise. Blow up balloons? You must be dreaming.
Anyway, so after you make me wait two-and-a-half hours and I hand you two pages of carefully-typed information I need you to know -- like request for the mammogram prescription and explanation of why I need to go to Columbia, and full reports on every medical appointment I have had since I last saw you -- you rudely put it in my file without reading it and asked my aide to come into the room. Next, you told the aide "I need you to talk to me because I don't have time for her [meaning me] to type out her answers on the machine". I was floored; I had just waited two-and-a-half hours and not once did you apologize for the delay. And now you insist on speaking to my aide, who only repeated the questions you asked and I answered. When my aide noticed that most of your questions were answered on the paper I gave you and pointed that out, once again you were exasperated. That was the last straw. Such lack of respect for a patient is unacceptable. I may be in a wheelchair and talk with an assistive device, but it is your job to deal directly with me. Two-and-a-half hours is way too long for a patient to wait, and don't think I didn't notice that Russian-speaking patients who had appointments later than I did, were taken before me.
I gave you every benefit of every doubt, but you proved to be disrespectful, arrogant and a proponent of "my-way-or-the-highway" doctoring of 50 years ago. You are not God and I don't have to put up with your bad behavior in this day and age of choice. I have chosen another doctor who -- by the way -- apologized for making me wait 30 minutes in her waiting room. I have an email which I can use to ask her questions between appointments, and request prescription refills. I have already done so, and my prescription was at the pharmacy a few minutes later. I am very happy with my new doctor and will not hesitate to recommend her; I will continue to dissuade people from consulting with you.
Sincerely,
Fern Ellen Cohen
Will I mail this to the doctor? Probably not. Because she will probably just stick it in my file without reading it, like she does with everything else I have given her. She'll probably just think I died, or went to a nursing home. Or maybe never notice that I'm gone, or maybe even heave a sigh fo relief that she doesn't have to deal with "the lady who talks with the computer". Either way, she and I are done.
Let me tell you the reasons I have changed doctors. I had a very nice general doctor at the other end of Queens Blvd but since she had moved from spacious quarters at 97-77 Queens Blvd, which she shared with another doctor, she was less able to provide me with quality care. Her exam rooms in her new location were minuscule and there was no room for my wheelchair. She came up with a solution to give me the last appointment on Wednesday and I had to wait for all the other patients to leave so she could examine me in her waiting area in full view of her [female] office staff. Despite this being a semi-private arrangement, it still wasn't ideal. But at least this doctor listened to me. However, she often rushed me; I sometimes smelled the scent of a pizza which had been dropped off earlier by a pharmaceutical rep, and I could understand her hunger. As a matter of fact, I had to fast before every appointment for my bloodwork and I felt like going in the back to steal the pizza; thankfully, my wheelchair couldn't fit in the room where the pizza sat. You see, despite her giving me an 11:45 appointment, she was always behind-schedule and by the time she got to me, it was usually about 2:00pm. I stuck with her until she got sloppy with callbacks and her staff member told me she would call right back one afternoon, and I learned later that she had already left for the day and didn't receive my message about a medicine refill until three days later when she returned from her weekend. I hate liars, so decided it was time to switch.
I went from the frying pan into the fire. Even though your office is right around the corner from my apartment, I was worse off with your practice. First, I quickly learned of your unavailability between appointments, even to pharmacists. My pharmacist -- whom I have been using for 30 years -- complains that it is nearly impossible for him to call for a refill on a prescription. Once, he was so frustrated that he told me he had given up. So I sent my aide in person; she waited nearly an hour in your waiting area before she could even get the message to you. And then you told her I had to make an appointment to come see you in order to get the refill. WHAT?? I had just seen you three weeks before so why did I have to see you again just to get a refill? You never return phone calls, and this concerns me. How could I have any kind of relationship with a doctor who doesn't return phone calls?
I happen to be a wheelchair user and can barely fit into your exam rooms. Your "practice-within-a-practice" used to be a furniture store. The practice owner took a large open space and built exam rooms barely big enough for a doctor and her patient, let alone a wheelchair. For an establishment which opened post-ADA [American with Disabilities Act of 1990], this is unacceptable.
What is even more unacceptable is the fact that you insisted on GIVING ME A BREAST EXAM IN THE HALLWAY!! You insisted that "nobody is looking" and was extremely annoyed when I expressed my displeasure. And, speaking of breasts, why did it enrage you when I asked you for a prescription that I could use for a mammogram at Columbia Presbyterian Medical Center? I have been going there for the last 20 years, and they are the only facility with a WHEELCHAIR-ACCESSIBLE MAMMOGRAPHY MACHINE !! And yet, when you handed me a prescription for a local facility and I said I wanted to go to Columbia, you were positively exasperated. Did I ruin a kickback that you receive from the local facility? If so, I am sorry because I know doctors don't make as much money as they used to. Oh, and I did have that mammogram appointment in March but when I sent my aide to your office for the prescription, you refused to give it to her unless I came in. Funny how you told me after my last appointment "see that you don't come back before having your mammogram." and now you won't give me the prescription until I come in. What???!!!
But, my own exasperation reached a peak three months ago during my last visit. I waited TWO AND A HALF HOURS in the waiting area until you called me. Then, not one gesture of apology passed your lips, for having an 11:30 appointment and not seeing you until 2pm. Might I remind you that I was fasting because I was having blood work? By the time you examined me, I felt like I was going to faint, and you asked me why I couldn't breathe strongly enough when you examined my lungs. How many times have I reminded you that fatigue is a hallmark of ALS, as well as weak breathing.? Once again, you told me I should be blowing up balloons for exercise. Blow up balloons? You must be dreaming.
Anyway, so after you make me wait two-and-a-half hours and I hand you two pages of carefully-typed information I need you to know -- like request for the mammogram prescription and explanation of why I need to go to Columbia, and full reports on every medical appointment I have had since I last saw you -- you rudely put it in my file without reading it and asked my aide to come into the room. Next, you told the aide "I need you to talk to me because I don't have time for her [meaning me] to type out her answers on the machine". I was floored; I had just waited two-and-a-half hours and not once did you apologize for the delay. And now you insist on speaking to my aide, who only repeated the questions you asked and I answered. When my aide noticed that most of your questions were answered on the paper I gave you and pointed that out, once again you were exasperated. That was the last straw. Such lack of respect for a patient is unacceptable. I may be in a wheelchair and talk with an assistive device, but it is your job to deal directly with me. Two-and-a-half hours is way too long for a patient to wait, and don't think I didn't notice that Russian-speaking patients who had appointments later than I did, were taken before me.
I gave you every benefit of every doubt, but you proved to be disrespectful, arrogant and a proponent of "my-way-or-the-highway" doctoring of 50 years ago. You are not God and I don't have to put up with your bad behavior in this day and age of choice. I have chosen another doctor who -- by the way -- apologized for making me wait 30 minutes in her waiting room. I have an email which I can use to ask her questions between appointments, and request prescription refills. I have already done so, and my prescription was at the pharmacy a few minutes later. I am very happy with my new doctor and will not hesitate to recommend her; I will continue to dissuade people from consulting with you.
Sincerely,
Fern Ellen Cohen
Will I mail this to the doctor? Probably not. Because she will probably just stick it in my file without reading it, like she does with everything else I have given her. She'll probably just think I died, or went to a nursing home. Or maybe never notice that I'm gone, or maybe even heave a sigh fo relief that she doesn't have to deal with "the lady who talks with the computer". Either way, she and I are done.
Monday, June 8, 2015
Walk to Defeat ALS in Manhattan and Ride for Life
Fern's Fighters are registered for the Manhattan Walk and for the Long Island walk to Defeat, which will be on Saturday, September 19. I would like more people to join us at Eisenhower Park in September, but if you just want to make a donation, go to this link The new tee-shirt design, by none other than our team designer Danielle "Nellie" Aquaviva -- will be displayed soon.
Thursday, April 16, 2015
NewYork Winter, 2014-2015; Bad Karma All Around: Dad, Aunt Sylvia, Cold, and More.
First of all, check this out. Some guy mentioned me in his blog and then posted the coolest pics of some of the architecture in my neighborhood. Some guy by the name of Alan Rosenberg who came to visit me in 2009 loved my neighborhood and some of the remnants of pre-WWII architecture and wrote about it, in his blog [link above or click http://alanrosenberg.blogspot.com/2009/01/rego-park-ny.html ]
Okay, so my last update talked about the losses of a dear aunt and a dear friend -- My Aunt Vicky and fellow ALS warrior Norma Steck-Hess. But that's not all. The same day [January 2, 2015] that my Aunt Vicky passed away, the husband of my therapist also passed away. Dr. L had been taking a hiatus since her husband went into the hospital for surgery, and then for a few weeks while he was "recovering". Then she reported to me that he was "deteriorating" and she would need more time off. It wasn't until mid-January that she emailed me and gave me the sad news that her husband had died. She then said that she would probably return to her practice in early February. She ended up further delaying her return to February 23, because she was not ready and wouldn't be able to "be present" for her patients. As it turns out, I probably would have had to cancel a few sessions due to the weather, which has been "dangerously cold" according to the TV meteorologists. My apartment was so cold, that we have been wearing hats and layers of clothing INSIDE.
Okay, so this selfie was taken outside, which wssn't much colder than inside. I was wearing my pink-framed reading glasses and my sherpa hat that ties under my chin. And forgot to camouflage my freckled sun-damaged complexion. This why I don't post pics of myself and don't take many selfies at all -- for various reasons, ALS has made me very un-attractive.
Then later in February, I heard of the death of another aunt, my Mom's younger [and last remaining] sister in California. My aunt Sylvia was the one my Aunt Vicky went to live with, when her own husband died. My aunt Sylvia was 82 and she and I were not close when I was a child. When I became an adult, Sylvia and I became closer and I found her to be a faithful confidante. I know she loved me very much, and that is why she could not deal with my illness. She called me on the phone in the early stages of my disease and could not understand what I was saying. The shock was too much for her, I guess, because I never heard from her again. I thought about her many times and considered writing her a letter because she wasn't techno-savvy and didn't have a computer and email. But laziness and weakness got the best of me and I never did. It always hurts when people from my past, freak out from my ALS and completely abandon all contact with me because they just can't handle it. I have learned to deal with more and more solitude as the years go on.
Here is a picture of my Aunt Sylvia when she was young. The Vogel girls -- my mom Ruth, and her sisters -- Lynn, Vicky and Sylvia -- were all very beautiful.
But the bad karma doesn't end there. Bad things seemed to be happening all over my "universe". My 87-year-old Dad was fainting and weak. He went to the hospital and now is in a rehab facility -- aka extended care. He hates being there and wants to go home, but he cannot live alone anymore and has to have round-the-clock home care. He's not too happy about that either. I can relate because I hated to have my privacy and space invaded by strangers too. But I have a studio apartment and he has a house. So he is in better shape than I am because he has a lot more space for another person. Still, I totally understand. It's a whole change in lifestyle for him and a new era. My sister Haley has had to handle the logistics for him via an attorney, but I luckily served as a model as one who has been through the "spenddown" through a pooled-income trust in order to get home care. Once that is all in place, things will feel a lot better, but it's a waiting game I am all too familiar with. All in all, it's an unfortunate situation that Haley has to handle it all herself. This is not what we signed up for -- all children [in our case -- both sisters] should be able to share the duty of taking care of an elderly parent. They call it the "sandwich generation" but this sandwich is open-faced because I am a slice of the bread that is busy with the full-time job of taking care of myself. Or is it the other way -- are the children the "bread"around the sandwich or are we the "meat"?
More still: My friend Danielle lost her bunny Marley and about a month later, Marley's partner Phoebe. This happens a lot with bunny rabbits; one half of a bonded pair passes away and soon after, the partner goes too. The same thing happened with Nickels and Angel -- the bonded pair of my friend Deb several years ago. Bunnies can die of broken hearts. Another furry friend also passed away this winter -- Abbey aka Cissy, the 18-year-old cat companion of my friend Louise. I can't remember ever entering Louise's apartment without Abbey greeting me. And the human world wasn't spared either -- besides my two aunts and my friend Norma, my friend Deb lost her two grandparents within weeks of each other. I began to advise people not to come around me, because I was sure I was bad luck. Danielle then came down with pneumonia last month...whew.
Here is my friend Danielle holding her bunny Phoebe. They had just lost Phoebe's partner Marley, and Danielle was planning on finding another hus-bun for Phoebe, but then Phoebe passed soon after this picture was taken. Danielle is bi-cultural like my nieces and nephew -- Jewish mom and Italian Dad.....thus the menorah and Christmas tree [just like at my sister's house]
And the cold!! This was an especially bad winter, but the heat in my building never worked right all winter. Now that spring is coming, the heater has been repaired, but we went through torture, often wearing hats and gloves in the apartment. My building superintendent was fired by my board rather suddenly last month. Since he is refusing t I spent about two months not going outside; Queens -- ever the forgotten borough -- was a sheet of ice and not good for navigating wheelchairs. AND, with the temperatures at record lows, I risked killing my brand-new wheelchair batteries. So now I am left with pent-up needs for medical and diagnostic appointments. I guess I know what I will be doing in the coming months -- Access-a-Ride here I come!!
As winter comes to an end, Spring is starting to look much much better. Surinder -- my aide from India who is really into astrology -- says that I am moving out of this crappy karma in April. Let's hope she is right
Okay, so my last update talked about the losses of a dear aunt and a dear friend -- My Aunt Vicky and fellow ALS warrior Norma Steck-Hess. But that's not all. The same day [January 2, 2015] that my Aunt Vicky passed away, the husband of my therapist also passed away. Dr. L had been taking a hiatus since her husband went into the hospital for surgery, and then for a few weeks while he was "recovering". Then she reported to me that he was "deteriorating" and she would need more time off. It wasn't until mid-January that she emailed me and gave me the sad news that her husband had died. She then said that she would probably return to her practice in early February. She ended up further delaying her return to February 23, because she was not ready and wouldn't be able to "be present" for her patients. As it turns out, I probably would have had to cancel a few sessions due to the weather, which has been "dangerously cold" according to the TV meteorologists. My apartment was so cold, that we have been wearing hats and layers of clothing INSIDE.
Then later in February, I heard of the death of another aunt, my Mom's younger [and last remaining] sister in California. My aunt Sylvia was the one my Aunt Vicky went to live with, when her own husband died. My aunt Sylvia was 82 and she and I were not close when I was a child. When I became an adult, Sylvia and I became closer and I found her to be a faithful confidante. I know she loved me very much, and that is why she could not deal with my illness. She called me on the phone in the early stages of my disease and could not understand what I was saying. The shock was too much for her, I guess, because I never heard from her again. I thought about her many times and considered writing her a letter because she wasn't techno-savvy and didn't have a computer and email. But laziness and weakness got the best of me and I never did. It always hurts when people from my past, freak out from my ALS and completely abandon all contact with me because they just can't handle it. I have learned to deal with more and more solitude as the years go on.
But the bad karma doesn't end there. Bad things seemed to be happening all over my "universe". My 87-year-old Dad was fainting and weak. He went to the hospital and now is in a rehab facility -- aka extended care. He hates being there and wants to go home, but he cannot live alone anymore and has to have round-the-clock home care. He's not too happy about that either. I can relate because I hated to have my privacy and space invaded by strangers too. But I have a studio apartment and he has a house. So he is in better shape than I am because he has a lot more space for another person. Still, I totally understand. It's a whole change in lifestyle for him and a new era. My sister Haley has had to handle the logistics for him via an attorney, but I luckily served as a model as one who has been through the "spenddown" through a pooled-income trust in order to get home care. Once that is all in place, things will feel a lot better, but it's a waiting game I am all too familiar with. All in all, it's an unfortunate situation that Haley has to handle it all herself. This is not what we signed up for -- all children [in our case -- both sisters] should be able to share the duty of taking care of an elderly parent. They call it the "sandwich generation" but this sandwich is open-faced because I am a slice of the bread that is busy with the full-time job of taking care of myself. Or is it the other way -- are the children the "bread"around the sandwich or are we the "meat"?
More still: My friend Danielle lost her bunny Marley and about a month later, Marley's partner Phoebe. This happens a lot with bunny rabbits; one half of a bonded pair passes away and soon after, the partner goes too. The same thing happened with Nickels and Angel -- the bonded pair of my friend Deb several years ago. Bunnies can die of broken hearts. Another furry friend also passed away this winter -- Abbey aka Cissy, the 18-year-old cat companion of my friend Louise. I can't remember ever entering Louise's apartment without Abbey greeting me. And the human world wasn't spared either -- besides my two aunts and my friend Norma, my friend Deb lost her two grandparents within weeks of each other. I began to advise people not to come around me, because I was sure I was bad luck. Danielle then came down with pneumonia last month...whew.
And the cold!! This was an especially bad winter, but the heat in my building never worked right all winter. Now that spring is coming, the heater has been repaired, but we went through torture, often wearing hats and gloves in the apartment. My building superintendent was fired by my board rather suddenly last month. Since he is refusing t I spent about two months not going outside; Queens -- ever the forgotten borough -- was a sheet of ice and not good for navigating wheelchairs. AND, with the temperatures at record lows, I risked killing my brand-new wheelchair batteries. So now I am left with pent-up needs for medical and diagnostic appointments. I guess I know what I will be doing in the coming months -- Access-a-Ride here I come!!
As winter comes to an end, Spring is starting to look much much better. Surinder -- my aide from India who is really into astrology -- says that I am moving out of this crappy karma in April. Let's hope she is right
Monday, February 2, 2015
What Death Teaches About Life --Loss of another ALS Warrior and a Dear Aunt
Every time I lose someone to death, I am reminded of some very important lessons about life. One of the most important of these is the tenuousness of life. In the eleven years since my diagnosis, I have personally known many who have died unexpectedly. Some never seemed to be sick a day in their lives, and some had chronic illnesses and died of something else. Some were older, some middle-aged and some young. And that is why it burns me up when I hear "I don't know what to say to you because if I tell you the good things happening in my life, it might make you feel bad" Not only do I not begrudge anyone happiness; but I also know that these people have to enjoy life now because you never know what will happen tomorrow. Anyway, Renee Lo Iacono said it better than I ever could, in her Huffington Post article "4 Things Death Teaches Us About Life"
Around the new year, I lost a dear friend and fellow ALS warrior. Pictured above, Norma Steck-Hess was a special person. For 30 years, she was an ER nurse at St. Luke's Hospital in NYC. There are many theories as to causes of ALS. One theory is that stress brings on the change in the motor neurons that triggers the disease. I can't think of any job more stressful than an emergency-room nurse. Anyway, for most of Norma's adult life, she was a single mom. But in her 50s, she got married to Bob. Well, she was diagnosed with ALS a year after they married. Imagine finally finding love and marriage after retirement and planning a life of enjoying a new spouse and travel and relaxation, only to be diagnosed with a disabling disease a year later. Norma became a good friend to me, befriending me at my first MDA/ALS support group meeting. I enjoyed many pleasant afternoons and even a Christmas celebration at her beautiful home in Flushing and when I had a problem with a mean VNS nurse, Norma wrote a letter that changed my life. She knew the CEO of VNS and wrote a letter scathingly condemning the nurse's treatment of me, and lack of understanding of my disease. From then on, a sadistic nurse was eating out of my hand. I was forever grateful to Norma and her support. In the last few years, I didn't see her because she lost use of her hands and didn't feel comfortable using her eye-gaze device. I actually suspect she fell into a grave depression. I will miss her; all in all, she lived 15 years with ALS, which is above and beyond expectations [most patients lose their battle within 2-5 years]. I have learned an important lesson from her death, which is to never lose touch with anyone, even if they seem to be dying. Yes, it's scary because eventually you will have to mourn them, but eventually if you live long enough, you will mourn hundreds of people, including some you never dreamed would pre-decease you. I regret not making more of an effort to connect with Norma -- even with a family member -- after she stopped communicating on a regular basis. Even a monthly card sent to her house expressing that I was thinking of her and praying for her, would have gone a long way. I shortchanged Norma, but made a promise in her honor, to send more written notes and cards to people via old-fashioned snail mail. Email is a great invention, but there are still people who cannot or will not use it. When Norma could no longer use a computer, I should have made more of an effort to reach her, even if she could not reciprocate.
Another loss was my mom's sister Vicky[pictured above on the left; that's my mom Ruth at right] on January 2. My mom grew up very poor. Her parents emigrated to the United States in the early 1900s from Austria, and settled in Brooklyn by way of Minnesota. Thank goodness my mom was forever telling us stories about her family, and since I have a good memory, I really should write them down. Vicky was not my aunt's real name; her real name was Elsie. But she changed it to Vicky and only as a young adult did I find out her real name and promised my mom that I would never tell Vicky that I knew.
Vicky died at 88 years old; my mom would have been 83 if she were still alive. Basically, my maternal grandmother gave birth roughly every two years. My mom once told me she only remembers her mom either pregnant or nursing. And to my knowledge, all the babies were born at home. My mom and I used to watch old movies together and one of the movies we loved was "A Tree Grows in Brooklyn" -- my favorite book by the way -- and there is a scene where Francie Nolan's mom gives birth at home and asks Francie to boil water and go fetch the midwife. I was shocked when my mom revealed that she could relate to that scene, because that is exactly what happened in her own house. They would send my grandfather and my mom's brothers out of the house and the girls would stay with my grandmother during labor, but they would never stay for the birth. The gaps in the two-year intervals of births, were babies who died. I seem to remember there were two babies who were born alive and died as babies, and my uncle Sol died of leukemia at 12. They say women were accustomed to losing some of their children back in those days, but I don't believe they ever got used to it. The stress must have gotten the better of my grandma Frieda [Fanny], my namesake, because she died of breast cancer at 50 in 1948, just weeks after getting her diagnosis.
Getting back to my aunt Vicky, she was a longtime employee of the famous Roseland Ball Room, which is featured in many films from the 1940s and 1950s. She never married until her 50s. When I was 29, I learned that she gave birth "out-of-wedlock" when I was 10. That explained why we never seemed to see her after that; she gave birth to the baby in a "home for unwed mothers" since single motherhood was a shameful thing in 1965. Until then, I slept over my grandfather's house in Bensonhurst, Brooklyn many Saturday nights when my parents went out. My grandfather's house also had the unmarried siblings of my mom living there -- my uncle Simpson, my aunt Sylvia and my aunt Vicky [and my aunt Lynn between marriages] because back in those days, single children -- even adults -- stayed with their parents when they didn't marry. Anyway, I loved those sleepovers because the next morning, aunt Vicky would always make me pancakes with Log cabin syrup and then take me to Nelly Bly Playland, where we would go on the rides; then we would go to the local playground and swing on the swings. Because Vicky was so pretty, all the men would hit on her, but she would tell me to go along with the story that I was her daughter so they would stop bothering her.
Vicky married in her 50s to a local policeman named H. I never met him, but I saw pictures of him. He was a good-looking gray-haired man who apparently was fighting his own inner demons. Shortly after they got married, my aunt Sylvia moved out to Mission Viejo, California near San Diego. My mom and I took a trip out there in 1987 to see my aunt Sylvia while I was still working at Aeromexico and had my flight benefits. Vicky and H. had also moved close to her. Years earlier, my uncle Irving had moved his family to Huntington Beach in Orange County, so he was the one who got Sylvia, Vicky and H., and later on my Uncle Simpson settled with the long-distance moves. During that trip, my mom and I got to hang out with Sylvia and Vicky. During this trip, he was in Brooklyn so I still didn't meet him. I now know that alcoholism is usually a way of "self-medicating" an often-undiagnosed mental illness such as bipolar disorder, depression or even schizophrenia. In the 1980s H. was in recovery from his alcoholism. Because he was a retired cop and worked as a security guard, he had a legal licensed gun at home. And quite shockingly, he used that gun to commit suicide with my aunt Vicky in the next room. Vicky was never the same after that. Such is the pattern of suicide -- when the plan is in place, the patient seems to be in great spirits, and the ones left behind in the cloud of helplessness and shock, are left to suffer seriously. Vicky moved in with Sylvia and mourned H. for the rest of her life. One day after my uncle Simpson suffered a heart attack and Vicky, Sylvia and Irving came to Brooklyn to be with him, I took Vicky to McDonald's on Kings Highway and she relived H.'s last morning with me, while pulling out of her purse a worn and tattered copy of H.'s typewritten resume. I knew at that moment that she would never get through the trauma and would forever suffer from PTSD, like an eternal veteran of a war none of us could never understand.
When I think of Vicky and H., I wonder how she lived so many years after he left this world. Was it a blessing or a cruel curse? and I think of Norma and myself, struggling so hard to outlive a death sentence imposed on us by a disease and the medical profession.
Addendum: I have since removed certain sentences from this story and used only the first initial of my aunt's husband. I received angry comments from the daughter of H., accusing my aunt of some very disparaging acts. When changed the URL of this blog, all comments disappeared, and I found it best that this happened. There are two sides to every story, and my side is that I lost a loving aunt, who -- like all of us -- was far from perfect. But -- in the end -- this is my blog and it is written from my point of view. Out of respect for someone who isn't here to defend himself, I made certain adjustments, but I am not obligated to present a view of my aunt which disparages her memory.
Around the new year, I lost a dear friend and fellow ALS warrior. Pictured above, Norma Steck-Hess was a special person. For 30 years, she was an ER nurse at St. Luke's Hospital in NYC. There are many theories as to causes of ALS. One theory is that stress brings on the change in the motor neurons that triggers the disease. I can't think of any job more stressful than an emergency-room nurse. Anyway, for most of Norma's adult life, she was a single mom. But in her 50s, she got married to Bob. Well, she was diagnosed with ALS a year after they married. Imagine finally finding love and marriage after retirement and planning a life of enjoying a new spouse and travel and relaxation, only to be diagnosed with a disabling disease a year later. Norma became a good friend to me, befriending me at my first MDA/ALS support group meeting. I enjoyed many pleasant afternoons and even a Christmas celebration at her beautiful home in Flushing and when I had a problem with a mean VNS nurse, Norma wrote a letter that changed my life. She knew the CEO of VNS and wrote a letter scathingly condemning the nurse's treatment of me, and lack of understanding of my disease. From then on, a sadistic nurse was eating out of my hand. I was forever grateful to Norma and her support. In the last few years, I didn't see her because she lost use of her hands and didn't feel comfortable using her eye-gaze device. I actually suspect she fell into a grave depression. I will miss her; all in all, she lived 15 years with ALS, which is above and beyond expectations [most patients lose their battle within 2-5 years]. I have learned an important lesson from her death, which is to never lose touch with anyone, even if they seem to be dying. Yes, it's scary because eventually you will have to mourn them, but eventually if you live long enough, you will mourn hundreds of people, including some you never dreamed would pre-decease you. I regret not making more of an effort to connect with Norma -- even with a family member -- after she stopped communicating on a regular basis. Even a monthly card sent to her house expressing that I was thinking of her and praying for her, would have gone a long way. I shortchanged Norma, but made a promise in her honor, to send more written notes and cards to people via old-fashioned snail mail. Email is a great invention, but there are still people who cannot or will not use it. When Norma could no longer use a computer, I should have made more of an effort to reach her, even if she could not reciprocate.
Another loss was my mom's sister Vicky[pictured above on the left; that's my mom Ruth at right] on January 2. My mom grew up very poor. Her parents emigrated to the United States in the early 1900s from Austria, and settled in Brooklyn by way of Minnesota. Thank goodness my mom was forever telling us stories about her family, and since I have a good memory, I really should write them down. Vicky was not my aunt's real name; her real name was Elsie. But she changed it to Vicky and only as a young adult did I find out her real name and promised my mom that I would never tell Vicky that I knew.
Vicky died at 88 years old; my mom would have been 83 if she were still alive. Basically, my maternal grandmother gave birth roughly every two years. My mom once told me she only remembers her mom either pregnant or nursing. And to my knowledge, all the babies were born at home. My mom and I used to watch old movies together and one of the movies we loved was "A Tree Grows in Brooklyn" -- my favorite book by the way -- and there is a scene where Francie Nolan's mom gives birth at home and asks Francie to boil water and go fetch the midwife. I was shocked when my mom revealed that she could relate to that scene, because that is exactly what happened in her own house. They would send my grandfather and my mom's brothers out of the house and the girls would stay with my grandmother during labor, but they would never stay for the birth. The gaps in the two-year intervals of births, were babies who died. I seem to remember there were two babies who were born alive and died as babies, and my uncle Sol died of leukemia at 12. They say women were accustomed to losing some of their children back in those days, but I don't believe they ever got used to it. The stress must have gotten the better of my grandma Frieda [Fanny], my namesake, because she died of breast cancer at 50 in 1948, just weeks after getting her diagnosis.
Getting back to my aunt Vicky, she was a longtime employee of the famous Roseland Ball Room, which is featured in many films from the 1940s and 1950s. She never married until her 50s. When I was 29, I learned that she gave birth "out-of-wedlock" when I was 10. That explained why we never seemed to see her after that; she gave birth to the baby in a "home for unwed mothers" since single motherhood was a shameful thing in 1965. Until then, I slept over my grandfather's house in Bensonhurst, Brooklyn many Saturday nights when my parents went out. My grandfather's house also had the unmarried siblings of my mom living there -- my uncle Simpson, my aunt Sylvia and my aunt Vicky [and my aunt Lynn between marriages] because back in those days, single children -- even adults -- stayed with their parents when they didn't marry. Anyway, I loved those sleepovers because the next morning, aunt Vicky would always make me pancakes with Log cabin syrup and then take me to Nelly Bly Playland, where we would go on the rides; then we would go to the local playground and swing on the swings. Because Vicky was so pretty, all the men would hit on her, but she would tell me to go along with the story that I was her daughter so they would stop bothering her.
Vicky married in her 50s to a local policeman named H. I never met him, but I saw pictures of him. He was a good-looking gray-haired man who apparently was fighting his own inner demons. Shortly after they got married, my aunt Sylvia moved out to Mission Viejo, California near San Diego. My mom and I took a trip out there in 1987 to see my aunt Sylvia while I was still working at Aeromexico and had my flight benefits. Vicky and H. had also moved close to her. Years earlier, my uncle Irving had moved his family to Huntington Beach in Orange County, so he was the one who got Sylvia, Vicky and H., and later on my Uncle Simpson settled with the long-distance moves. During that trip, my mom and I got to hang out with Sylvia and Vicky. During this trip, he was in Brooklyn so I still didn't meet him. I now know that alcoholism is usually a way of "self-medicating" an often-undiagnosed mental illness such as bipolar disorder, depression or even schizophrenia. In the 1980s H. was in recovery from his alcoholism. Because he was a retired cop and worked as a security guard, he had a legal licensed gun at home. And quite shockingly, he used that gun to commit suicide with my aunt Vicky in the next room. Vicky was never the same after that. Such is the pattern of suicide -- when the plan is in place, the patient seems to be in great spirits, and the ones left behind in the cloud of helplessness and shock, are left to suffer seriously. Vicky moved in with Sylvia and mourned H. for the rest of her life. One day after my uncle Simpson suffered a heart attack and Vicky, Sylvia and Irving came to Brooklyn to be with him, I took Vicky to McDonald's on Kings Highway and she relived H.'s last morning with me, while pulling out of her purse a worn and tattered copy of H.'s typewritten resume. I knew at that moment that she would never get through the trauma and would forever suffer from PTSD, like an eternal veteran of a war none of us could never understand.
When I think of Vicky and H., I wonder how she lived so many years after he left this world. Was it a blessing or a cruel curse? and I think of Norma and myself, struggling so hard to outlive a death sentence imposed on us by a disease and the medical profession.
Addendum: I have since removed certain sentences from this story and used only the first initial of my aunt's husband. I received angry comments from the daughter of H., accusing my aunt of some very disparaging acts. When changed the URL of this blog, all comments disappeared, and I found it best that this happened. There are two sides to every story, and my side is that I lost a loving aunt, who -- like all of us -- was far from perfect. But -- in the end -- this is my blog and it is written from my point of view. Out of respect for someone who isn't here to defend himself, I made certain adjustments, but I am not obligated to present a view of my aunt which disparages her memory.
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