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. 

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.

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.

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.

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.

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.

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.

My Take on the ALS Ice Bucket Challenge and My Message to the Haters

I deliberately waited for the momentum to slow down a little and for the "naysayers" to rear their ugly heads, as I was sure they would-- and they DID!!  Because no matter what good deed is done, some group -- or groups -- must come out of the woodwork to criticize and almost make the do-gooders question that they did good, and almost make them feel that they did something bad. 

You had to be living under the proverbial rock this summer -- at least in the United States -- to not be familiar with the ALS Ice Bucket Challenge.  But if you are reading this and are not on Facebook and/or don't have a TV, and are not in the United States, here is what it was about [in a nutshell]…..In order to raise money for ALS, you filmed yourself dumping an ice bucket full of icy cold water over your head, either of your own altruistic good will or as a response to a challenge [nomination] by someone who had already done the challenge.  Most of the people who did the challenge also then donated money to the ALS Association, the ALS Division of MDA[Muscular Dystrophy Association], of which ALS is one of the 40+ muscle diseases covered, or MDA's Wings Over Wall Street, Project ALS or ALSTDI [Therapy Development Institute].  Then you nominate 3 people [or groups] to follow in your example and do the Ice Bucket Challenge and nominate 3 others….and so on.  I am not going to go into the history or how this whole thing started;  you can "google it".  Just go on YouTube and search for "ALS Ice Bucket Challenge" and you will see hundreds of videos of everyday people getting icy water dumped on their heads.  Curiously, there are no videos on YouTube of the many celebrities who did the challenge, but there were hundreds -- TV stars like Mariska Hargitay and Chris Meloni from "Law and Order SVU" and the cast of "Modern Family" to superstars like Angelina Jolie and Brad Pitt, Reese Witherspoon, and even media moguls like Oprah and Ellen DeGeneres.  And these stars gave huge amounts of money in donations.



In the 75 years since Lou Gehrig's famous "Luckiest Man" speech [who hasn't seen Gary Cooper in "Pride of the Yankees"?] at Yankee Stadium, there hasn't been such awareness of the disease that now bears his name in the United States.  In the 10.5 years since I have been diagnosed, I have not heard ALS on the lips of so many celebrities!  Do they know what it's like to live with ALS?  Most of them don't as most of them didn't know about cancer or AIDS until it touched their lives or the lives of loved ones.  And as the years went on and the dollars flowed in, people were living longer with cancer and AIDS and people talked about those diseases -- decades after my grandmother died in 1948 of breast cancer at the age of 50 after being sick for a few weeks.

Since typically, ALS patients died within 2-5 years, it was considered a death sentence with no hope.  Upon diagnosis, most ALS patients were told to "get your affairs in order" and basically to go home to die.  And we weren't glamorous -- we were quickly put in wheelchairs and many of us lost our ability to speak, which is not sexy.  So I personally don't care if the over 60 mllion dollars raised is done so by celebrities who -- at this point -- don't know diddly-squat about my disease.  And I don't care if they view it as a fun way to get publicity at this juncture.  All I know is that many people I have met this summer have suddenly woken up and realized that I have the disease for which they are getting buckets of water thrown on their heads.  I am seeing people on Facebook dedicate their ice-bucket humiliations to me and that means a lot. This Ice Bucket Challenge has raised a shitload of awareness as well as funds.  At this point, I don't expect much more.  I know there are a bunch of people out there who are getting wet and freezing and saying "this is the disease my friend/coworker Fern Cohen has ……now I get it!!"

All was going too well, and then the party poopers had to weigh in.  First, people with other diseases, some with cancer, others with other neurological or muscle diseases, saying that they were sick and tired of the attention ALS was getting.  All my 10+ years with this disease, I never begrudged the cancer, AIDS, MS or Parkinson's patients the attention their diseases were getting.  I always understood cancer and MS were not as rare as ALS and in fact I had always volunteered for AIDS Walks, MS walks, Broadway Cares/Equity Fights AIDS, etc.  Those are terrible diseases too.  But for the first time in 75 years, can't we "enjoy" our day in the sun and the funding we so desperately need to find a cure or even an effective treatment?-- to date, we only have relief of symptoms and ONE FDA-approved drug which only prolongs our lives maybe a few weeks.  Most cancers --especially when caught early, can be cured or put into remission these days, AIDS is no longer a death sentence, and MS has so many different drugs coming out all the time.  Cut us a break, will you?  Just this once.  Now when Rite-Aide and CVS run their promotions every year and the cashier asks "Would you like to give $1 to ALS,  less people will respond with "wha?" and maybe remember the Ice Bucket Challenges and say "ALS?  sure, here's a dollar".  Maybe I can get more donations for my team "Fern's Fighters" in this year's "Walk to Defeat ALS".

Then came the concern about where the money is really going.  This is a concern when we donate to any charity; is the money going to pay CEOs' huge salaries and/or administrative expenses?  And, in this case, many wondered if the money was going to research or to patient services.  I suggested to these skeptics that it was hard to know this with the ALS Association and MDA [sorry] and it would be safer to donate their money to either Project ALS or ALSTDI   because these two entities ONLY do research and both have "dream teams" of scientists that ONLY do research and have very low overhead.  Furthermore, both of these organizations were started by family members of ALS patients and their websites are totally transparent; they tell you all about the research they are doing and where the Ice Bucket Challenge money is going.  I have seen full-length documentaries about both Project ALS and ALSTDI and I am totally confident that the money you donate will go straight to research.

Then came the water people.  Okay, I understand there are poor people who don't have clean water in the world, especially Asia and Africa.  I have given to that cause and a cereal I buy often: Purely Elizabeth gives a percentage of what I pay, to the Water Project.  These water people said they refused to do the Ice Bucket Challenge because  it wastes water.  Okay, okay.. I hear you.  We water our lawns and keep the water running while we brush our teeth too.  Okay, maybe next time we can tweak the challenge to use recycled bath water or rain water, or come up with a way that we don't waste so much water.  this was all new to us. If you're concerned about wasting water, then just make a donation, and SHUT UP.

Then the Catholic Church weighed in and said that Catholics should find out if their money was going to usage of fetal stem cells.  So next time we can promote organizations that only use ADULT stem cells.  I hear you.  And the animal activists exposed that a lot of the research uses mice.  I don't know how to answer that as I am an animal lover too. I am understandably happy they are not using bunnies for ALS research and refuse to buy cosmetics tested on animals and eat a vegan diet mostly [I fall off the wagon sometimes].  To date, the "mouse model" hasn't really yielded any dramatic results, so research scientists are looking at other "models",  like more human trials.

But the naysayer who really pissed me off was a partner of an ALS patient who passed away sadly about 6 years ago.  I like this woman a lot and she did something really special for me after her partner died for which I will be eternally grateful.  But this woman posted on Facebook that she was against the Ice Bucket Challenge, because celebs were using it as a "publicity stunt" and knew nothing about ALS.  She thinks that these celebs should be going around and talking about ALS.  Yes, that would be ideal, but WHO CARES at this point?  Typically, we don't feel passionate about a disease until it touches us personally.  Nobody cared about breast cancer when my mom went on her first journey with the disease in 1976.  It was whispered -- as if the mere utterance of the words would spread the disease through the air -- and women were embarrassed to talk about it [in the mid-1970s, breasts were very private]  It often involved breast removal, which was the elephant in the room and people stayed away from my mom as if she had the Plague or leprosy.  Now, we wear our pink ribbons with pride and women [and men] talk about breast cancer freely,  even celebrities.  The same with AIDS -- it took a while before anybody said in public that he was HIV positive.  Kids like Ryan White were banned from going to school.  It took a while for anyone to get up and talk freely about AIDS.  What did anyone know about Parkinson's Disease before Michael J. Fox came out as the disease's famous face? And then I wonder: would this woman whose partner is dead half a dozen years -- would she begrudge the money raised by the Ice Bucket Challenge if her love were still living with ALS?  

What do we expect?  The money and awareness raised by the Ice Bucket Challenge have been phenomenal.  It even caught on in the Cayman Islands, the United Kingdom and Canada.  We are talking about the Ice Bucket Challenge next summer.  Perhaps the effort can be tweaked in future to use recycled water, have the funds go to stem cell treatments that only use adult stem cells, only to research that doesn't use animals, and only earmarked for research altogether [and make sure no ice bucket money goes to any other fund, like administrative or patient services].  And maybe next summer, we can produce a series of PSAs with celebrities getting icy water thrown on their heads and saying something like "ALS is a degenerative and disabling disease which strikes adults of both genders, all ages, races, religions, nationalities and ethnicities, in the prime of their lives.  For more information, go to  [website]".  For now, I am so grateful to the many celebrities and non-celebrities who raised colossal funds this summer. Nothing is perfect,  especially the first time.  And, it's important to note that the ALS Ice Bucket Challenge was started by someone to promote another cause, and then gained momentum for ALS by an ALS patient.  It wasn't begun by professional fundraisers or PR people, who would have perhaps researched the ins and outs and anticipated the objections.  However, this grassroots campaign didn't see what was coming.  As a matter of fact, nobody saw that this campaign would go so viral and bring in the many millions it raised.  It was the most awesome surprise of my summer.

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.