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.

PEG Tube and -- Removal of a Faulty PEG and Leaky Hole in My Gut

I have been at the height of frustration, anger and depression for more than a month.  I have had a faulty PEG tube that needed to be removed due to leakage and I had to keep putting off its removal over roughly an eighteen-month period.  My gastroenterologist and I made the determination that the leaky and clogged  tube needed to come out.  Not only could I no longer use it if I ever arrived tothe point where I could no longer swallow, but the site wasleaking t
A PEG tube [Percutaneous Endoscopic Gastrostomy] is urged by doctors for ALS patients to get early in the disease.  Risks from anesthesia increase as the disease progresses, and especially as respiration deteriorates.  Eventually, an ALS patient has problems swallowing and the PEG is often placed earlier rather than later as a precaution, whether or not it is needed at that time.  The patient can eat by mouth even when the tube is there.  In my case, I had a tube placed in 2005,  a year after diagnosis.  At the time, I was totally able to eat by mouth.  But it was suggested to me by the ALS clinic, that it was a good idea for me to tube-feed as a way to conserve energy.  So I put cans of formula in my tube, only to find that the whole pleasure of eating was missing from my life.  Furthermore,  the more I became knowledgeable about nutrition, the more uncomfortable I felt about a substance that was full of chemicals, and over which I had no control.  Yes, it uses up energy to eat solid food -- using utensils, chewing, swallowing, etc. -- but I made that choice.  At that point also, my disease seemed to be progressing so rapidly that I wasn't ready to give up food before I absolutely had to.

My progression slowed down and 2010 rolled around.  At that point, the PEG had been in for five years and was getting old and weak.  I had changed ALS clinics and they referred me to a different gastroenterologist from the original one.  Although I had heard that this PEG could be removed and another one placed in the same opening, the replacement wasn't a success and I was told I would need to go through a second endoscopic procedure.  Now, this is IMPORTANT:  if a PEG tube falls out, the patient MUST GO to an emergency room IMMEDIATELY [if not sooner] because the hole starts to close up IN A FEW HOURS!!  So one morning, the tube that the doctor had replaced for my old tube,  fell out as I was getting dressed.  This was not a surprise because the gastroenterologist already said he would most likely have to make another hole because the original one was "not good anymore" [whatever that meant].  So, while I was sitting at the edge of my bed looking at my fallen-out tube, I knew in my case, that I wouldn't go to the ER and so I let the hole close up.  But I will repeat this: when a tube falls out and you have any intention of having another PEG placed in the same hole, YOU MUST GO TO THE CLOSEST EMERGENCY ROOM IMMEDIATELY because the hole will close up starting in a FEW HOURS and will usually be TOTALLY CLOSED WITHIN A DAY.  This previously-stated information is going to figure into my telling below of what is happening to me in the present moment.

Fast-forward to the year 2014.  My tube that was placed in a whole new opening via endoscopy in the fall of 2010 [the year the replaced first tube fell out] had been giving me problems for a long time.  It was so clogged that water flushes were unsuccessful.  Moreover, the skin on my abdomen around the tube [called the "stoma"] was constantly irritated and inflamed by a leakage of stomach acid.  And even worse, the stomach acid emanated an odor that no perfume or body spray could cover.  And --if that weren't bad enough-- the gauze around the tube was no longer absorbing the ever-increasing amount of acid leaking out of the tube and onto the stoma, was now seeping onto my shirts and tops.  Soon, my aides were dividing my tops into two distinct categories -- "house" shirts and "going-out" shirts.  As you can imagine, with time, the "going-out" shirts eventually made their way one-by-one to the "house" shirts collection.  And after a while, I would have nothing clean and unstained enough to wear for going out.  When I went to the annual Wings Over Wall Street fundraiser in October, of 2015],  I sent one of my aides [Ellita -- whom I call my "stylist"] to the local Dress Barn, where she managed to pick out a lovely outfit of skirt and top fit for a "dressy after-work attire" function.  Needless to say, I came home with a stomach acid leak on the blouse.  As I write this, I am wearing an old ALS Walk tee-shirt with no bra.  My bras I have reserved for rare times when I leave the apartment for medical appointments in the last few days when I don't want my "girls" to bounce with no support [not a good look].  Yes, my second stoma is high enough to wet and stain my bras. 

Fast-forward to  Summer of 2014 when I see my gastroenterologist [GI Doctor] and we both agree that this faulty tube has to come out.  In the fall of that year, I was hospitalized for a DVT blood clot in my left leg [see my blog entry of December 8, 2014] , followed by six months of having to take a blood thinner called Xeralto.  In order to remove the faulty tube, I would need to stop the Xeralto.  So, there goes a six-month period where I had bigger fish to fry than this tube site. Then, after going off the Xeralto in the summer of 2015, it was a few months later that I ended up in the hospital again in October, 2015 for a recurrence of a DVT blood clot.  [see blog entries for To this day, we don't know if the cardiologist was mistaken when he cleared me in June, 2015 free of blood clots and able to stop taking Xeralto.  So when I got out of the hospital, we were coming on the holiday season of 2015 and I knew I needed to stay on Xeralo for several months.  Then, at the beginning of 2016, I was laid up in bed for three months with a broken tibia and my faulty tube was once again relegated to a back burner.  Now, finally on May 11, thet ube was removed and as of a full month later, itis still  gushing out food and stomach acid, ruining all my shirts and bras.  

Two weeks after the tube was removed and still gushing, one of my aides told me this was all ridiculous, and was getting out of hand.  She told me that not only did I reek of a sour odor, but my entire apartment reeked  and when she walked in from the outside, it  hit her like a lead balloon.  We went to the local emergency room of Northwell Health Forest Hills.  I texted my friend Nancy and she came to the ER to meet me.   There was a really nice [and cute!] doctor there who consulted with another doctor. He concluded that this stoma was never going to close by itself.  And this is not something you can just put a few stitches at the top because it goes deep into the gut.  A surgeon has to stitch it up from inside; so I freaked out at the thought that I might need surgery!  My breathing is bad enough that anesthesia presents a terrible risk.

A desperate email to my GI doc and his PA [Physician's Assistant].  I was panicky.  My GI doc said there were less invasive procedures we could try and he gave me an appointment the following week to talk about it.  At the appointment he explained that I probably wasn't healing because the stoma [hole] was forming scar tissue and so wasn't closing up the way it should.  So we scheduled a procedure that involved putting an abrasive substance inside the hole to open it up again and form new raw skin that could then heal and form scar tissue where it needed to form and close up the stoma.  In order to do this, I would have to be off my Xeralto [blood thinner] for four days before the procedure and a few days after.  So I went back for the procedure a week later and stopped the Xeralto four days before and stayed off it several days after.

Where am I now?  Well, I haven't been out of the house -- except for doctor appointments -- since the tube was removed on May 11.  I have been in the apartment with frequent dressing change, no bra because the bras have been badly messed up.  I could smell the odor around me so -- along with my bralessness -- I was not really fit to go out.  My birthday was June 7, and I was supposed to go out that evening for dinner with my friend Louise and I had to take a raincheck.  When my friend Nancy heard that I would be sitting home, she brought me sushi from one of my favorite restaurants.  She made an otherwise depressing birthday very festive.  Two nights later, Louise brought Asian food over from a very good neighborhood restaurant, and banana pudding from the famous Magnolia Bakery in Manhattan.  I have dinner plans with two other friends at the end of the month and wonder if I will have to delay those outings too.  I don't know if this latest procedure will work.  If it doesn't, I will have the endoscopic procedure to stitch the stoma from inside my stomach.  That will have to be scheduled soon because with my winter and spring relegating me to stay cooped up, I refuse to ruin my favorite season of the year -- summer.  In the meantime, I am breaking the bank with purchases of 4x4 gauze pads, tape and other supplies for my dressings, which need to be changed a few times a day.  Not to mention that all my tee-shirts are forever ruined. along with some nicer shirts.  I can't go shopping for new clothing until the hole closes up, either by nature or surgery.  Until then, I remain frustrated and angry, with a serious case of cabin fever.

My Life Mostly in Bed [Cleaner Than it Sounds] With a Broken Tibia

I have now spent my first month mostly flat on my back in bed.  Unfortunately, this isn't as fun as it sounds.  I am sadly alone while in bed -- what a waste!!  But I have to spend at least another month in this position -- and sadly alone.  I went for my one-month followup with my orthopedist Dr. Radnay and he is pleased with the way my tibia is healing, but not confident enough to let me go cast-less yet.  So I have graduated to a hard cast which stops below the knee; this is a slight improvement on the hard cast I had going past the knee.  At least now I can bend my right leg at the knee -- for what it's worth.  I still can't get into a shower and wash my hair.  Trust me -- dry shampoo doesn't cut it, and for reasons I will elaborate further below, it's not really practical yet for me to go to the salon to get my hair washed.

First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg.  And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can.  This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment.  I can't go tootling around the neighborhood, especially in cold weather.  My right foot is exposed and I don't have a sock big enough to go over the cast.  Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement.  When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground.  So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement.  Another accident is just what I don't need.

I also have to ask for every little thing I need.  Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table.  But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard.  So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table.  They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table?  I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard.  And, for the best possible position, my head has to be far back to the top of the bed.  I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed,  I can sense their pain.  The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.

Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes.  In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together.  I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate.  Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit.  Who needs a man? [although a man would be nice too].  And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded.  On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder.  I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet 

There is a good reason why I have more room in the apartment, and I will give more details next time.  Right now it's time for me to go back to my bed where it's difficult to type. Future projects:  paint the apartment, get a couple of new appliances, and move some other things around.  These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others.  Back to my bed -- unfortunately, alone.



 

2016 Started With a Bang -- to My Tibia , Cast Over My Knee, Bed Bound-- Forced to Sit Still for Three Months

It started with a box that came from Target.  It contained a 3-tier metal trolley that I could load things on, things that have been sitting on top of my dresser and causing ugly clutter; things like creams and cosmetics and nutritional supplements.  But I couldn’t find anyone willing and/or able to put the trolley together.  My building porter agreed, and I planned to give him an extra $20 to do so.  But then Juan was promoted to building super and found out what a busy job that was, and just didn’t have the time to do it.  So, in the meantime, my aide Cheryl found a cheap plastic trolley for $10, which I used for my BiPaP ventilator and there wasn’t any room for anything else.  So I would still find use for the Target trolley, but decided I would return it.  But when I checked the website for the receipt, I learned that the trolley was an “unreturnable item”.

So the box sat on the floor, where it still sits now.  And I went to get something off the top of the cluttered dresser and didn’t realize how fast the wheelchair was going and banged my foot on the box.  My knee bent and I heard what I thought was a crunch, but figured I just twisted my ankle and it would get better.

On Saturday January 16, I had some pain when I did my usual “stand and transfer”  but I assumed it would get better and it seemed to.  By Saturday night my aide was using a “u-sling” for transfers because it doesn’t require me to stand.  My leg was so painful I couldn’t sleep that night.  Because I am taking the blood-thinner Xeralto, I cannot take any NSAIDS [like Advil, Aleve, aspirin or Motrin], so that leaves Tylenol, of which two extra-strength caplets barely took the edge off.

By Sunday afternoon, I knew I had to go to the local ER [North Shore/Long Island Jewish Hospital in Forest Hills] about six blocks away from my apartment.  But I couldn’t drive there myself because I had to tilt the wheelchair back to raise the painful leg, and that’s not a good driving position.  So we called one of the volunteer ambulance corps and they referred me to another team because they thought I was going to Cornell.http://nyp.org/facilities/weillcornell.html  The second team brought me to the basement and we waited for one of the EMTs to come around with the ambulance.  Two hours later, after the ambulance wouldn’t start, we were ready to go six blocks.  We made the initial call at 2:00pm and reached the ER door at 4:30pm.  I was done by 6:30.  I had x-rays and the doctor [Dr. Rachel Morris, who was wonderful] told me I “broke a bone in the foot” and gave me the option of staying there overnight to be seen by an orthopedist the next day, or go home with painkillers and see an orthopedist of my own choosing.  Now I knew that the next day was Martin Luther King Day and there was no way I was going to be seen at that hospital by any kind of decent specialist on MLK Day.  I chose to take the painkillers and go home and call my doctor at Cornell on Tuesday morning.

My friend Debbie Wolfe called my primary care doctor -- Dr. Susana Morales -- at Cornell and I was referred to Dr. Craig Radnay,  an orthopedic surgeon on East 66th Street that Thursday.  Dr. Radnay’s office took their own set of x-rays and they showed I broke my TIBIA [pictured above]!!  As it is risky for an ALS patient to go under general anesthesia, he wants to see if the bone will heal without surgery.  So I have a hard cast up to just past my knee.  I am to be in bed as much as possible, and keep transfers with the lift to a minimum.  So here I write this with my limited time out of bed at my laptop.  I spend about half of my waking time in bed.  Those who know me, know that’s not my style.  I am learning how to watch TV on my mobile devices.  Truth be told, I am most comfortable in my bed covered by my warm comforter and with my legs elevated.  

I am scheduled to see Dr. Radnay again on February 11, and I am hoping and praying that the  bone is healing with the cast, which I am predicted to wear for three months. I am also in less pain while in bed.  Starting today, I reduced myself to ½ Oxycodone every 4-5 hours.  Oxycodone makes me very sleepy and one of it’s fun side effects is constipation.  So I will give regular updates; in the meantime, please keep me in your thoughts and prayers for a quick recovery without the need for surgery.

By the way, Chelsea is staying in a wonderful home while I am recuperating….More on that next time.  But so far, she has met a bunny couple and a very inquisitive cockatiel…….pics next time too.

Walk to Defeat ALS in Manhattan and Ride for Life

 These photos above are of the 2015 Ride for Life, now in its 18th year.  The gentleman seated smack in the middle with the gray beard, is Christopher Pendergast who has survived with ALS for more than 20 years, started the Ride with a team of guys with ALS who rode their wheelchairs to Washington DC from Long Island.  Nowadays, they ride from Montauk all the way to Manhattan.  In the last couple of days, they pass through Yankee Stadium, home of Lou Gehrig, as well as Lou Gehrig's real home in East Harlem.  On the last day, they go over the Brooklyn Bridge, accompanied by a group of bagpipers.  The pictures above are of the closing ceremony which I attended with Louise Foisy and Lynette Wahid.  In past years, I rode from washington Square Park to Columbia University, a leg that the Ride decided to cut out this year to shorten the last day.  For 12 days, ALS patients ride their wheelchairs with walkers alongside them.  Some ride the whole 12 days, and some for a day or two.  But along the way, they are met by many organizations and schools full of children and teens who have raised millions of dollars.  The money goes to grants for respite care and equipment for patients, and to research.  For more information, go to http://www.rideforlife.org.  Christopher is married to Christine [yes, Chris and Chris] and she has been right by his side for several decades, as well as their son and daughter.  They have been a very active family for the cause.  Before ALS, Christoper was a science teacher in Northport, Long Island.

These pics above are of the 2015 Walk to Defeat ALS in Manhattan.  My team was small this year -- Lynette Wahid and Danielle Aquaviva, but we will be collecting donations through October.  My team -- Fern's Fighters -- will also walk in the Walk to Defeat ALS in Eisenhower Park on Long Island on September 19 this fall.  Once again, Danielle designed some cool tee-shirts. They did something different for the Manhattan Walk to Defeat this year.  Formerly, the walk started around the West Village -- like Charles Street -- and ended at West 55th Street.  This was a nightmare for people who came in cars, which they parked at the starting point and then had to get themselves from 55th all the way down to a spot about three miles away where they began.  This year, we started at about Houston Street and ended in the same spot.  Of course, you can't please everyone; there were complaints that the point where we turned around to come back was confusing.  And the pier [45] where the walk started had nowhere for Access-a-Ride to pull in.  So he dropped us at Pier 40 and Danielle called them to change the pickup point for the return to Pier 40.  I should also mention that they served the best ARTISINAL pizza at the end of the Walk.  I honestly don't know why more people don't join us for the Manhattan Walk.  In many ways, I prefer it to the Long Island Walk, especially since I can use Access-a-Ride and take my motorized wheelchair.

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.

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

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.

DVT [Blood Clot] and Cellulitis Put Me in the Hospital

So when the summer ended and my trips to Rockaway Beach became history, I suffered withdrawal and a bit of a blue mood.  Every year when I enter winter mode, I get a little sadder.  We had a bit of a heat wave, but the businesses at the beach close up after September and my main beach buddy Louise became very busy directing her Gingerbread Players in Chekhov's "Three Sisters" which took up her weekends anyway. 

The bright spot was the Walk to Defeat ALS in Eisenhower Park, Long Island on September 28.  Danielle designed a fantastic tee shirt for the team:

 She is a very talented graphic designer so if you want to hire her to do a design, let me know.  Anyway, she designed the shirt with bunnies -- of course -- and pirates to honor my friends in the Cayman Islands.  One of my best jobs was Area Sales Manager for Cayman Airways in the tri-State area, in the early 1990s, and a lot of my Facebook friends are from Cayman.  Thanks also to my team members Diana,  Janis Hirsch, Deb and Andrew Wolfe [who brought the wrap sandwiches from Farmer Joel in Oceanside, Long Island, and always awesome fundraisers] and Sofia and Elan Wolfe.

In late October, a turn of events put my life in a tailspin that I am only now recovering from.  I began to notice my left leg -- especially the knee -- getting harder to manage when I tried to stand.  I chalked it up to my injury at the beginning of 2013, and prayed that it didn't mean my disease was progressing.  By the beginning of November, my left foot and leg were blowing up to twice the size of my right foot and leg. I was concerned but not alarmed, although I should have been.

By Sunday 11/9,  my aide Gulshan made me cancel plans to go to a play that my friend Louise directed.  Gulshan insisted I go to the ER at North Shore/Long Island Jewish Forest Hills Hospital , which is just around the corner from my apartment.  I fought her tooth-and-nail on this.  I had had some bad experiences in hospitals, most notably in Beth Israel overnight in 2005 when they wouldn't let me keep a cellphone or even a speaking device except for a writing board that the nurses kept moving and wouldn't give it to me because they didn't know what I was asking for -- despite a sign over my bed indicating "Patient needs writing board to communicate".  Enter the morning shift of nurses -- one of whom kept laughing at me when he didn't understand me.  And there had been visits to the local ER in Forest Hills that had been disastrous.  So I avoided hospital stays at all costs, despite promises from my friend Michael [a big kahuna in North Shore/LIJ System's administration] that the hospital was getting better.

So, when the doctor looked at me in the ER, told me I had cellulitis and intravenous antibiotics were a good idea,  and suggested admission until at least the next day, I went kicking and screaming.  I was in the ER waiting for a bed from 3:00 pm on Sunday until 5:00 am Monday.  Then I went up to a room, and ended up staying until Wednesday at 6:00 pm. Once admitted, my aides are not paid, but Gulshan stayed with me until 6 am Monday and then Cheryl came and stayed until about 2:30 pm  and ran back to the apartment to get me some things, as well as meet Chelsea's Auntie Nancy to pick her up and take her to her house.  By then, I learned that I would not get out that day - far from it.  By then, I also learned that a blood clot was suspected and I would be the hospital's "guest" for "quite some time" as the nurse put it.  I was terrified because I pictured MRSA and staph and antibiotic-resistant microbes creeping into my body and causing a worse scourge and possibly killing me.  So Louise came to see me on Monday night and we discussed my Health Care Proxy documentation that was now in a forgotten place somewhere in my apartment and how important it was to find it.  I had no idea when I would get out of there.

I must say that things have improved immensely in technology since 2005 and in hospital policy as to the electronics they allow.  Not only was I allowed to keep my iPhone, but I had brought my charger and the nurses gladly kept charging it for me in an electric outlet right in back of my bed.  I couldn't have asked for better care all around.  The nurses and LPNs were great!  On Tuesday when the doctor came in and told me that a test I took that morning had revealed a blood clot [aka Deep Vein Thrombosis or DVT] and that I would have to stay one more day, I questioned whether I should go home so soon.   DVT is a serious thing -- if my blood clot had gone further -- to my lungs and/or heart, it would have been much more serious and led to a much longer hospital stay.  At its worst, it could have been fatal.  On Wednesday evening I was discharged with a 7-page discharge plan.  I left with prescriptions for an additional week-long round of oral antibiotics, steroids to wean me off them within a week, and a regimen of a new generation of blood-thinner [Xeralto] that didn't require weekly blood-monitoring and no dietary restrictions.  The latter is a big deal, because the old generation of blood thinners like Coumadin and Heparin required a weekly blood draw and also restrictions on some of the veggies I love most [high in vitamin K] like cabbage, spinach, broccoli, kale and brussels sprouts.  So I was a happy camper as far as that was concerned.  The blood thinner is to prevent further blood clots, but according to the doctor, the actual blood clot I already had, would clear itself.

So I came home on Wednesday, Chelsea's Auntie Mary Ann brought her back on Saturday, and I will follow up with my primary care doctor next Tuesday.  I have to say I felt a little crappy for about a week after I came home, from the antibiotics and the steroid-weaning, but when that was over, I actually felt better than I had in several weeks.  I guess I didn't realize how sick I really was.  The weakness and fatigue [and bluer-than-usual disposition] in the weeks preceding my hospital admission, I had chalked up as a norm with my disease,  and sadness at summer leaving and winter coming on.  And I won't be so afraid of checking out an emergency at my local North Shore/LIJ Forest Hills Hospital in future.  I won't say that I will check in there as a spa hotel, but if I have to stay, I won't be so terrified.  

SICK!! Meeting a 60s Teen Idol and 42nd Long Beach HS Mini-Reunion Birthday

I don't remember the last time I felt so sick.  It started right after my mini high-school reunion [which I will talk about later] when I woke up with a throat that was so dry, it was weird.  That was Sunday, July 27.  Then the mucus came from everywhere.  And the coughing in unstoppable spasms.  By the time the week came to a close, the mouth sores arrived.  And the sore throat.  I had no appetite, even though my stomach was rumbling.  At the beginning of the next week -- which was also the beginning of August -- all I could eat was watermelon and ice cream.  Being that I was probably dehydrated, the watermelon was a good idea.  I tried sucking on ice cubes, but it was tough to chew them.  If I had been able to get ahold of ice chips, it would have worked out so much better.  I went to my primary care doctor, even though I can finally see a light at the end of the tunnel.  I feel weak and exhausted from all the coughing and the disruption of sleep.  There was a point where the coughing was causing a huge ache to go through my head and my throat.  I began to doubt if it would ever get better.  I managed to get myself to Cornell last week for the abdominal CT scan needed for my gastroenterologist to see if a "button" placement is doable for my PEG tube site [more on that later], but -- as of now -- I haven't left the house again in a week.  I cancelled my psychotherapist appointment and an appointment for sonograms of my abdomen and carotid artery which were ordered by my primary care doctor [whom I am going to see today, by the way].  So my doctor visit was frustrating to say the least because I waited two hours to see her, including the lady I graciously let go before me because she cried to me that she had a fussy baby with her.  So by the time the doctor got to see me, she looked exhausted and tried to rush me; however I asked all the questions I wanted.  I walked out with a prescription for zithromax [antibiotic],and another script for a cough suppressant with a load of side effects, one of which was hallucinations.  So the second day I took the medication, I fell asleep [another side effect was sleepiness] and awoke to a girl sitting on my floor who was me circa 1997 or so [about the time I started my teaching career].  She had shoulder-length auburn hair and I looked at her and she looked at me, raised her thumb in a "thumbs-up" gesture and yelled really loudly "HEY !!!"  I screamed "Oh my God!!" and she was gone.  It was truly freaky.  Not the psychedelic colors of an LSD trip, but surreal and eerie just the same.

Just before I got sick, I had two nights out that I really forced myself to go through with.  I could easily have blown both off. The first was on Thursday, July 24th.  I am Facebook friends with the bass guitarist of my teen-idol group, British-invasion band Herman's Hermits.  His name is Karl Green and through his Facebook page, I found out he was touring with an American band through small venues like bars and pubs throughout the United States.  I expected his New York gigs would be all in Manhattan and when I read that their gigs were later at night -- like 10pm, I thought "no way will I be able to do that, much less find someone to go with me.  But when one of the gigs just happened to be in Glendale, Queens [right next to Rego Park where I live], I was pleasantly shocked.  And Louise was more than willing to go wit me; in fact she almost pushed me to go.  There was a complication with Access-a-Ride, who insisted I was giving them the wrong neighborhood--after they had closed for the night, and it was too late to call back, I found out that they had the address of the pub in a ridiculously far-out section of Queens.  Just as well, because we found a number of city buses that went to the pub. Anyway Karl couldn't have been nicer and posed with me for a couple of pictures and then also came to check on me later and to plant a kiss on my forehead.

Since I never look in a mirror, I am embarrassed by my worsening tetracycline staining on my teeth and that I still have weight to lose.  Have to work on both of those and get a full-length mirror for my closet door so I can monitor myself.

That said, I went to a 60th birthday celebration, which was really an excuse for a 42nd high school reunion. I never made it to the 40th due to budget cuts at Nassau County Able-Ride.  But this year they were able to take me to Long Beach in the evening, so I went.  Let me explain:  I am only 59 this year although my class of 1972 classmates all turn 60.  I started school in Brooklyn and they had skipped me from 1st to 3rd grade already by the time I entered the Long Beach School System in 7th grade.  So I was always a year younger than my classmates; they were born in 1954 and I was born in 1955.  Anyway, I received the nicest compliment from Marjorie Feinman, one of my high school friends.  She said "Fern, you look really cute.  You look much better in person than in your pictures.  Thank God for that because I hate the way I look in pictures.  I got warm greetings from most people at the party.  Arguably my best friend in high school [JF] gave me an icy reception and others didn't know how to react to me, but a good number were really receptive and warm.  Here are two of the nicest:  Mitch Platt and Lauri Cohen [who go together as a couple just last year, after never knowing each other in high school. 

 and of course, Marjorie Feinman Shuster gets a "thumbs-up" for her compliment.

A New Bunny Auntie, Fatty Liver?

My morning did not start out too well. I pulled out my box of photos I have not yet scanned because I knew I had two photos of *Matt.  I can even see the photos:  one of Matt and me, with his Oakley sunglasses around his neck, and the other of Matt holding a sea turtle at the Cayman Turtle Farm.  So I went through hundreds of photos and threw out the ones that really didn't mean anything in this day of being able to get pictures off the internet.  Suddenly a group of bad pictures taken in the 1970s of Big Ben mean nothing.  Anyway, I come across a bunch of pictures of myself during the first trip to Grand Cayman, when Matt showed me around.  I even came across a picture of me at the Christmas party down in Cayman with the airport station manager.  The two pictures of Matt? Missing, and I have no idea what happened.  Metaphorical?  Then, the next morning, my green tea appeared in a cup I hadn't seen in twenty years: A Cayman Airways mug.  Huh?  The logo of "Sir Turtle" is very much faded, but its appearance spooked me.  Metaphorical? 

My last blood tests at my primary care doctor revealed a "fatty liver", so I have to have a sonogram of my abdomen and kidneys.  I have since seen my gastroenterologist, and he said he is not worried about it.  I am trying to get him to cover my feeding tube opening with a flat "button", but he needs for me to have a CT scan of the area so he can determine if it can be done with the opening I have now, or if I have to have a whole new endoscopy procedure [this would make number 3 for me -- ugh], so I have all those procedures booked for the next 2 weeks.  

The day got better when I met the Wolfes for lunch -- Deb, Andrew and the twins Sofia and Elan.  It always gives me a lift when I see them.  This was my birthday lunch five weeks later.  Nothing like stretching my birthday out.  

Chelsea has a new auntie and I have a new friend.  Her name is Danielle [Nellie] and I met her -- of all places -- on LinkedIn.  I was in a freelance writers group and introduced myself as living in Queens.   My profile indicates that I am involved with rabbit rescue and she contacted me.    She came over this week and brushed out Chelsea, and was not intimidated or uncomfortable around my disability.  It was so comfortable and refreshing.  She was talkative and stayed until almost 11.  Here are some pictures of Nellie with Chelsea.

Well, okay, you can see Nellie's hand and shirt.  Maybe next time, there will be more of her.  But, you can certainly see enough of my Chelsea's beautiful face and how she loves to be petted.

Next time:  42-year high school mini-reunion and meeting one of my teenage idols up close...

Update, Making Amends, and Throwback: Cayman Airways

On the update front: I had my quarterly visit to the ALS/MDA clinic this past Friday and my muscles basically haven't declined in years. My legs don't work but the arms are strong and manual dexterity is good. I am now 10 and a half years since diagnosis (Jan, 2004). And my symptoms can be traced as far back as 1997.  I will start getting in-home physical and occupational therapy again to maintain and improve independence.  I lost 2 pounds, and would like to lose 15 more.  Summer is here and I went to Red Mango twice with Louise for my fro-yo fix.  I am excited because I have two bunny rescuers who have come forward to say that they want to visit, and a former student of mine has offered to help with a project around the house.  

A funny thing happens when you know your days are numbered.  You start to think about people you have hurt and/or relationships you have totally messed up and you want to make amends.  Suddenly "one day" becomes NOW.  And with the magic of social media, I find myself connecting with people I don't know very well [some not at all] and reconnecting with people from my past -- elementary school in Brooklyn, secondary school in Long Beach, college, jobs and volunteer work.  So I reconnected with Annu,  a former administrative assistant from Cayman Airways in NYC, as well as people from Cayman Department of Tourism and Cayman Airways in Grand Cayman.  

Cayman Airways was my first position as a sales executive in the travel industry and it was a very strange setup.  I interviewed there in 1989 and didn't get the job.  I could tell I was well-liked at my interview, but they were starting a whole new non-stop service out of New York and needed someone with experience, so they hired Winston, who was an experienced sales manager at British Airways and whose parents were from Jamaica.  This was all explained to me through a really nice letter from my would-be [and future] boss Frank.  Much to my chagrin, I went back to the job I had at Garuda Indonesia Airlines.  At the time i and even joined a better company with better chances of advancement. When I had my new job for only five months as a sales assistant, I received a phone call from Frank at Cayman Airways.  The man who had gotten the job instead of me, was moving to start an office in Atlanta and the position in NYC was open again.  I interviewed again and I got it.

I was informed that I was reporting to my bosses in Miami and flew to Miami for the quarterly sales meeting and met all my co-workers.  But I soon learned that there was a structure that was very confusing.  You see, for years,  Cayman had a staff in our cities that was under the control of the Department of Tourism, but they also repped the airline.  It was their concern to get people to the islands on any airline, but Cayman Airways felt they needed dedicated airline professionals in every office.  In my office, there had been a boss for years, but he wasn't MY boss and my Miami boss let me know it.  But C., the tourism boss in NYC had other ideas.  It was very uncomfortable that he expected to control me, but I had a boss in Miami.  Eventually my boss -- who always had my back, was terminated and my boss in Miami was B who would tell me to stand up to C but then would betray me behind my back. I was very naive about all this.  Let's just say that while I was on the road four days a week, it was natural for Annu to want companionship with the Cayman Airways/DOT people and there was a lot of manipulation going on by C and B and when the airline stopped flying out of NY and I was scrambling for a job, things had become so strained between Annu - who had already been hired by DOT, and C had hated me from day one, I ran out of there to a new job and didn't look back. I should have,

Fast forward to now in 2014. I had a long-needed talk online with Annu and I apologized for the crappy way I managed everything and we cleared the air,  There is still one person I need to reconnect with, but he has fallen off the face of the earth.  How does one disappear in this day and age of social media.  Anyway, I miss my days at Cayman Airways and it was a time of fantasy for me: a dream job and a dream island.

Sex and the Disabled Woman, Back from Nutrition Studies, Missing the Ocean

I cannot believe how long it has been since I have updated, but then again, maybe I can believe it.  I have just completed a certificate in Plant-based Nutrition in a course through e-Cornell, led by the renowned T. Colin Campbell and with lectures by other Cornell professors.  It reinforced what I have been learning for the past year -- that a whole-foods, plant-based diet is the healthiest way to eat and even the best for the environment.  My original bunny-friend/mentor, led me to this opportunity.  I am happy to say that this course is a graduate level class and my fellow classmates largely consisted of professionals in the health-care field -- including doctors, nurses, nutritionists, dieticians and other professionals taking the course for continuing education credit.  Although the course was totally online andcould be done at my own pace and time, each of the three courses had to be done within a r-week period.  So I did it, which proved to me that I can be focused and driven where I needed.

But I could only have dedicated myself to this, by neglecting other things, like email and gams online, and even television watching.  And now, I am unsubscribing from a lot of mailing lists, especially a whole lot of nutrition websites that I can see now, were superfluous.  Because after taking the course, I can see that a whole-food, plant-based diet is the way to go for the ultimate in immunity and the proper working of my body.  I am hoping to be able to get off some of my medications.  I am not going to resist physical therapy when I go to the MDA clinic next.  It can serve as exercise, and help me keep the weight down.  Oh, and a whole-food plant-based diet also helps keep down the weight.  

Now that we're finally in summer, I am getting outside a little each day to sit in the sun in front of the building.  My vitamin D level was low at my last doctor's visit, and I have to take supplements.  But it is my understanding that sitting in the sun without sunscreen for 20-30 minutes, you store enough vitamin D for the winter. This will be about the fifth summer that I will not see a beach or the ocean, and I sorely miss it.  My family is nervous about having me come to their beach club without an aide, and the aides won't go.  My family is frightened that "something will happen", even though I don't know what that something is.  However, they would not feel comfortable taking me to a bathroom, so I guess that takes care of that,  although I admire their honesty, and they say what others won't.  Despite the Americans with Disabilities Act, most public places misunderstand what the words "wheelchair-accessible" mean, and that beach club is no exception.  You cannot put a grab bar next to the toilet and call it "accessible".

I wonder about sex.  Recently, two disabled people I know, who are both more disabled than I am, mentioned being in relationships.  These relationships were entered into after being disabled.  So what does this mean?  Without going TMI, I still have desire and feelings  and could still use my hands, mouth and other elements of intimacy.  Of course, who would be attracted to me?  Good questions,  but I would love to have intimacy again, especially since I don't have to worry about getting pregnant anymore, and I am less worried about the morality of having sex with someone who is not committing to me.  All it would take is an understanding partner who could get me in the right position and be patient, because it's been a while.  I also wasted too much time from the mid 90s until my diagnosis, involved with a couple of men who were emotionally [and physically] unavailable, but that's for another blog update.  There are quadriplegics, for God's sake, who are involved with able-bodied partners.  How do they do it?  Maybe that's my next reading assignment.

I'll stop here, because I want to get this entry published.  But my ten-year longevity brings new questions.  I have been blessed, so how can I use this blessing for the greater good and how can I make my own life more meaningful and form solid relationships, as other connections move on and put more distance between us.  How can I let go of what's no longer working and embrace new situations that work better?

Coming from a Dark Place; Wish I Had Seat Elevation

As my printer is permanently broken, getting my papers together for this year's home care re-certification had additional challenges.  One thing I really miss with my present wheelchair is the feature of seat elevation.  It would cost m about $1100 cash out of pocket to add on this feature that I found so useful on my old wheelchair.  At the time I got the first motorized wheelchair, the MDA gave a $2000 grant to each client for wheelchair modifications.  Due to budget cuts, they no longer give this.  So one thing led to another:  even if my printer were working, it would have been too ominous a task to copy anywhere from 70-80 pages of documents.  And, without seat elevation, it's impossible to make copies at a public copy machine.  So I called Staples near my home and explained that I am in a wheelchair and needed to make one copy each of about 75 pages and the woman at Staples said "great.  Just drop it off and we can do it for you".  Such is the provision of the ADA: when self-service is not accessible, the PWD gets full service at self-service rates.  Well, that holds true if I show up myself.  But when an able-bodied aide shows up, she is directed to the self-service copier.  That task is not in the job description of an aide, so I was so grateful that Ellita stood at the copy machine and made the copies for me.  Otherwise, we would have had to make another trip with me [bundled up for the freezing cold] and tell the counter person I need assistance.  I am saving for a new printer and this time it will be wireless, so that I can also print from my iPad.  And, I still miss seat elevation on my wheelchair.

Beginning early April, I will be starting a course in Plant-based Nutrition through e-Cornell.  There will be 3 separate courses of two weeks each and at the end I will get a certificate.  I don't know what exactly I will do with the knowledge in addition to using it to better myself, but I look forward to somehow using it to help others, either by counseling, blogging or writing articles.

A couple of weeks ago, I went for my quarterly visit to the ALS clinic.  For some reason, each team member was trying to get me to sign on for home physical therapy again.  As I told about the experience in this blog, I had a therapist visiting from VNS [Visiting Nurse Service] and she worked me so aggressively that a couple of months after starting, my left knee began to hurt badly.  This was a year ago -- in March of 2013.  I had to stop PT and see an orthopedic doctor who visited the office of my primary doctor once a month.  To my dismay, I only saw a PA [physician's assistant] who gave me a prescription for physical therapy.  This time, I attended outpatient PT a couple of blocks away from the house.  I attended PT all through that summer and at times the pain was insurmountable.  When I had run out of Tramadol [pain reliever] and there were no refills for the medication, I called my primary doctor who never returned my calls.  So I made an appointment with the orthopedist at his own office and saw two young men who identified themselves as Medical Assistants.  They refused to let me see the orthopedic doctor and also refused to let me have any prescription painkillers.  I took over-the-counter painkillers until I realized I could live with the pain, but now had another sensation : a "pins-and-needles" feeling on the ride side of the left knee. see archive

So my neurologist prescribed Lyrica for me in the fall and said I seemed to have a neuropathy. He referred me to a rheumatologist. In the meantime, Lyrica made me even more sleepy than I usually am.  Moreover, as I wrote about in this blog, [see archive] I took an antihistamine one morning for my year-round allergies and I went into such a deep sleep that I was cognitively affected for a good part of a weekend.  I was panicky because I thought I was going into dementia.  When I woke up and realized I could think semi-straight again, I went on the internet and found out that antihistamines and Zyrtec don't mix.  Finally, I went to the rheumatologist and he determined that I didn't have neuropathy and told me to get off the Zyrtec, which I gradually did.

Anyway, the thought of going back to PT was not sitting well with me and this put me at odds with the members of my ALS team.  And to make matters worse and even more confusing is the question of whether home health aides are willing and even permitted to exercise me.  One of my aides works for many years for Partners in Care, which is the home-care arm of the Visiting Nurse Service [VNS], the company through which I get home PT.  In her in-service training, my aide has been told that she SHOULD NOT exercise me because of liability issues.  Then the VNS PT's come to my home and tell me that, in between sessions, and after they leave, my aides need to do ROM [range-of-motion] exercises with me.  Since Medicare limits their time with me, eventually they leave and expect that the aides will continue the work, which they don't.  When I was at clinic, the team members insisted that my aides have to exercise me.  So do I "yes" them to death and accept the PT, knowing that it will not work out the way they would like it to?  Or do I keep talking honestly and have the team think I am being uncooperative and difficult?  And the other question is:  do I have to go through a parade of people coming through my apartment to "intake" my case and then trying to push other services on me like occupational therapy [OT] with the goal of "making me more independent"  [LOL], and speech therapy [an even bigger LOL]?  Really! that is what they did the last time, and I had a procession of VNS people coming every day into my apartment full of machines and other clutter, including cardboard boxes.  

I have been in a very dark place this winter.  I cannot seem to conquer the clutter without people to help me move stuff.  Any able-bodied friends I had,  have moved on to other things; some are able and willing to do some kinds of things but not others[understandably].  And additionally, the closing of my basement access for a full month as well as the problem with my portable shower unit gave me a feeling of dependence and lack of control that was worse than ever.  For a while, I could neither take a shower nor get out of the building to get my hair washed at the salon.  I had a can of dry shampoo in the apartment for when my head got too stinky, but that is never the same as a shampoo.  There is a way to get down steps with a manual wheelchair, as my brother-in-law does every Thanksgiving to get me to the family dinner [their house is 6 steps up], but I have nobody strong enough to do that in my building, and then to wheel me around in the snow anyway.  While I often relish quiet time to meditate, get creative and read, and not have to worry about interacting with a mechanical voice and people who are uncomfortable with my disease,  I still get painfully lonesome.  And yet, my apartment is so visitor-unfriendly that I am ashamed to have people see it anyway. Spring is coming and I feel the dark place get a little less dark.

Stuck in a Frozen Apartment; Inspiring or Just Resilient??

It hasn't been an easy last few weeks.  First, a month ago,  my building put up a memo in the hallway announcing that there is repair work to be done in the basement level and that level will be closed of from 9am - 5pm every day from Mon through Saturday.  Now, for those of you who are not aware, the only way I can exit and enter the building is through the ramp at the basement level.  So, I postponed every doctors' appointment I had, as well as a lunch date with my friend Judy.  Then, a snowstorm came and I guess the building staff was so busy with snow duties that the basement work had to be pushed back a bit.  There was a memo that the basement would be closed down another week.  Furthermore, we were having trouble with the heating system in the building, and everybody in the building was complaining our apartments were freezing and we were all walking around with coats, sweats, and even hats and scarves inside our own apartments.  I even put a towel over Chelsea's wicker tent because she was uncomfortable even with her natural fur coat.  I learned a few days later that we had a busted pipe, which had to be repaired before the basement work could be completed.  So, not only could I not leave the building for appointments, but I didn't even have the option to go to hang out someplace warm -- like Panera or Starbucks.  We had some of the coldest days on record [close to 0 degrees] and I was stuck in a freezing apartment, with no way out to a warm place to hang out for relief.

Add to that another complication: my portable shower unit.  My friend Louise helped by making a set of phone calls to the distributor of the Fawssit portable shower unit, to get a new hose to replace the old one which had split. For those who have not been following me all these years, my wheelchair doesn't fit in my bathroom, and I haven't been in the bathroom for about five years.  So I have a portable shower unit called a "Fawssit" which hooks up to the kitchen sink [for outflow] and the bathroom toilet [for backflow of dirty bath water]. The people at Fawssit are not easy to reach, because voice mail picks up, which means that my relay operator has to leave a message and they have to call back and possibly get impatient when my aide has to relate what I communicate in writing, which leads to much frustration.  It was much easier to explain it all to Louise and have her field the voice mails and the callbacks.  So finally we got it together with my credit card and the part came - $90 later charged to my card.  Since the Fawssit is on loan from the ALS Association, it is my responsibility to return it in working order, and the maintenance is up to me.  So, the new hose is a little different from the old one and requires an adjustment to the kitchen sink.  The aides are a little reticent about asking the super and assistant super to come do service in my apartment while they are so busy with snow duties and basement repair.  So when my hair got too gross for myself to tolerate, before they closed the basement [which was before I received the new part], I went to the salon for a wash and blow-dry

The amazing thing about all of this is that, in my previous life, I was obsessed with showering at least once a day [more in summer],  and washing my hair AT LEAST every two days.  If you told me I would get to wash my hair and take a shower once a week, I would have said "shoot me now, please".  Every time anyone calls me "inspiring", I want to laugh, because sometimes it's not such a good idea to know what lies ahead, because you think "I can't handle that". But you get there, and do what you have to do.  You rise to every occasion because you have to.  You have no other choice.  I don't have the resources to remodel my apartment, so I deal with personal hygiene as best as I can.  I joke often that it's very medieval, but it is what it is.  For a long time, I was afraid to tell anyone about this, because I figured I would lose all my visitors and friends, who would think of me as "nasty" or "disgusting".  Now that I really only have one person who comes regularly to take me out, I can honestly say that I have lost all semblance of a social life anyway.  People move on, and it apparently wasn't because of lack of traditional hygiene.  If anyone had told me a few years ago that I would be stuck in my apartment xcept for doctor's appointments and a monthly visitor, with an added surprise once every couple of months [either from another friend, family or a surprise cousin from out of town or a once-every-few-years old friend], I would have said "shoot me now please". 

Coming up:  Nutrition course and HRA home care recertification [again!], more to look forward to.