Monday, June 25, 2018

Hiding My Blanket


Our air conditioning broke, and I spent a couple of nights sleeping in my recliner in the family room. My version of MS includes severe heat sensitivity. This means that exposure to high temperatures or even a slight fever reduce me quickly to wheelchair only movement, even around the house. The family room is easily 10 degrees cooler than the bedroom, and cross ventilation plus ceiling fan make it tolerable except on the hottest nights.

When I arose after the first night, I put the pillow I had been using, and the fleece throw that I had retrieved in the middle of the night on the floor next to my chair; the throw crumpled up compactly on top of the pillow. In the middle of the second high-heat night, it had cooled down enough to again require the fleece throw; it was gone. My dear wife, who daily helps me in all ways deal with the both the obvious and the insidious depredations of MS, cannot abide the appearance of a blanket neatly crumpled on the floor, and hid it from me when I wasn’t looking. Looking around a dark room for a small dark green blanket in the middle of the night is frustrating. It involves using the flashlight on my phone, while muttering under my breath things about said darling helpmate that would never be said aloud during the light of day. It is then doubly frustrating to discover that she has diabolically hidden the blanket folded neatly in the last place I would think of looking for it—almost directly under my head on the back of my chair.

She claims that the inability to find things in plain sight is all part and parcel of Y-chromosome syndrome. I think she must take some secret pleasure in frustrating me. Come to think of it, she has successfully frustrated me by hiding my blanket on the back of my chair several times in the past. She’s an extremely bright person; you’d think she’d get it by now.



Sunday, May 20, 2018

Book of Ruth

I was one of the presenters at last night's Tikkun Leil Shavuot at TBEMC:


On Shavuot we read the Book of Ruth. It is an interesting read as it gives us a window into our ancestors’ culture and society, social mores very different from ours, our essential attitude towards converts, and color on the life of King David’s great grandmother. My main takeaway from this story is as a parable of how we are to deal with the curve balls that life throws at us all.

My father, of blessed memory, was fond of quoting to me, much to my annoyance, a contracts professor he had in law school. When a student in his class complained about the tremendous amount of material he had to understand for an upcoming exam, the professor sympathetically admonished, “Young man, as you go through life you will meet with many vicissitudes, this is merely one of them.” In retrospect, none of the hardships I was complaining about when I elicited this quote from my dad were of any real consequence.

My dad, on the other hand, early in his marriage was taking law school classes at night, and wrestling with the family furniture store, which he despised, to support his wife and mother. Briefly, during college he enlisted in the Navy, graduated as a “90-day wonder ensign” from a WWII officer training program at Union College, was assigned to an LCT, replaced his commanding officer three days before D-day when his superior went down with an emergency appendectomy, ferried tanks to Omaha beach in the first wave ashore on D-day, and was sent home early (but after the fighting ended) on compassionate leave to say goodbye to his father who quickly died of an aggressive cancer. Thus, the furniture store. Long story short, my parents struggled a bit to have children; dad was sworn in as a lawyer the day I was born. The judge swore him in first and sent him home.

The more perspicacious of you may have noticed that I too have challenges, although I have never had to uncover someone’s feet on the pitch dark threshing floor. But, I can tell you all that what you see is very different from what I perceive. I have MS, as do a surprising number of other members of TBEMC. Every case of MS is different. I have a developed a few obvious disabilities, but do not suffer from many of the more hidden symptoms that afflict others—you can never assume that what you can see tells the whole story. Also, note that I have disabilities—I am NOT disabled.

My journey with MS started with a transient case of optic neuritis late in my junior year of college. Under today’s protocols I would be immediately referred to a neurologist. In 1974 even doctors spoke of MS only in hushed voices. Late the following year I developed some tingling in my left arm. They sent me for a spinal tap and discovered white blood cells in my spinal fluid. Since there was no treatment and no definitive prognosis, my doctor in consultation with my parents elected not to mention the probability of MS. Shocking by today’s standards, as perhaps is some of what we read in the Book of Ruth. About five years later I developed a pronounced limp and was appropriately diagnosed and informed. The limp disappeared.

At the time, all I could learn on my own about MS was that it was a progressive, incurable disease with no possible treatment. While progressive, there was no way to predict the course of the disease over time. The only medical advice I got was to cut down on my activities and get my rest. The best intelligence I got from my own research was that it was essential to keep my employer in the dark about the MS, as it would surely both affect my career advancement, and make it impossible for them to continue my health insurance. The only person I knew who had had MS was a good friend of my parents who died paralyzed in a VA hospital. My father had once opined that if Sy Zinderman had foreseen the last few years of his life, he would have ended it while he was still physically able.

In 1982, when Sarah was about a year old a beloved colleague with MS died of a heart attack in his car in the Bell Labs parking lot. I remember praying that I would live long enough to see Sarah’s bat mitzvah. It’s not that the MS was noticeably progressing, but the combination of uncertainty and ignorance really weighed at times. However, I never really embraced the advice about cutting back my activities.

In 1996, 22 years after my first symptom appeared the first treatment to slow the progression of MS made it to the market. I injected myself with betaseron every other day until 3 weeks ago. That’s almost 4,000 times. We now have almost a dozen treatments for different forms of MS, and I started a new one on May 1. I thought I might miss the injection ritual practiced religiously for almost 22 years. Not even a little bit.

I have a promising new treatment. I have new mobility assistance toys. I have reared (with lots of help) three children through bar/bat mitzvah to productive adulthood. I have participated in three lovely weddings to partners I truly like and—bonus—machatunim I like as well. I have the four sweetest, smartest grandchildren in the world.

Back to Ruth, our original story.

Ruth’s husband died, and to make matters worse her brother-in-law also dies. Ruth is, using the ancient language of our people, auf tsuris. She has no source of support. Her backup husband is gone, and she decides that her best course of action is to make common cause with her mother-in-law. She travels with Naomi back to her, now their people, which was probably an arduous and possibly dangerous journey. Naomi gives Ruth some, shall we say, dating advice based on her wisdom, experience, and understanding of the character qualities of Boaz. Ruth puts her faith in Naomi and follows through on the plan Naomi laid out. It’s a successful plan, and a happily ever after story.

Is this the story of an extraordinary person doing extraordinary things? Not really. To me this is the story of an ordinary person facing common life vicissitudes. She decides what is important to her, who is important to her, who she is going to trust, and places one foot in front of the other. She does what is necessary. She faces the future with faith, optimism, and hope; she knows the only direction to go is forward.

It was difficult to get my father to talk about the war; he had to be in the right mood. The stories he told were exciting, and to me he was exceptional. But, as a member of the greatest generation his trajectory through life was not unique. Hundreds of thousands of men and women interrupted their lives for war, then picked up their lives again. While many were damaged by the war, most who came home eventually resumed normal, successful, productive lives and faced the normal vagaries of building careers, families, and communities. They did what was required of them. One step at a time forward, into the future with faith, optimism, and determination.

Earlier I told you that with me what you see is very different from what I perceive. Some people see me as unstoppable. I stop. Some people only see me as a four to ten-minute delay as the bus driver wrestles with the wheelchair lift at 6:30 in the morning twice a week. Tough, deal with it. Some people see me as inspirational. That’s a little embarrassing, but in fact probably reveals more about them, than about me.

Every morning I wake up, sit on the side of my bed and grab my walker. I exclaim to myself, “This is ridiculous” as I make my way to the bathroom to start my day. I have only one life, and I’d rather live it happy than sad or angry. There is only one path forward, and I have an excellent partner to rub my back or kick my butt if I forget that. There are always changes that are necessary, or decisions that need to be made. These vicissitudes of life yield to knowing what is important, who is important, who to trust, and putting one foot in front of the other one day at a time. Just like my father. Just like millions of other people.

 Just like Ruth.

Friday, July 14, 2017

Nobody Cried Today

And now for something completely different. I haven't written a poem in 40 years, but this idea had to be expressed as a poem. I reached out for some editing help from my friend Nancy Lubarsky--a real poet. Her encouragement has empowered me to publish it here. I let this lay fallow for a couple of months, but there is another nascent poem rattling around in my head, so I had to clear the decks.

Inspired, of course, by my children and grandchildren.


Nobody Cried Today

The kids are in bed
Lunches made
Tomorrow’s presentation done
I sit with a glass of wine
Nobody cried today

It was off to work and school
Soccer, karate, homework, piano
Bumps, bruises, frustration
Siblings vex, bedevil and shout, but
Nobody cried today

No ball of tears
Curled up in my lap.
No stroking hair as I
Whisper “it will be OK.” Because
Nobody cried today

It is only one day
But something has changed
Parenting continues
It’s somehow different as I consider
Nobody cried today




Thursday, June 8, 2017

I am an A.D.A.

I am an A.D.A. You may have heard of the practice of nouning a verb (gerunds—e.g., learning, serving—very common). You may have been subjected to verbing nouns (denominalization—e.g., task you with a job, calendar an event--Benjamin Franklin said in a letter to Noah Webster that denominalization is “awkward and abominable.”). But now we are nouning the abbreviations of acts of Congress.

Language matters. It matters more than most people realize. The way we think is inextricably tied to words, and each word carries with it more than just its simple definition. Words and phrases drag along emotional baggage, innuendo, and an encoding of societal norms. That doesn’t even begin to factor in the tone of voice used, or the ethnic, class and social background of both the speaker and the hearer.

We invent new words all the time, often inadvertently. Sometimes we repurpose old words (e.g., gay), and sometimes a new word is an artifact of some other evolving societal change.

The world of disability has its own language issues. For example, having a disability is not the same as being disabled. In the first case one is describing perhaps a single malady, while in the second case you are classifying the state of the entire person. What may seem like a nuance to you may make a big difference in the way you think about the person being described; and let’s not even bring up the negative connotations of handicapped. A handicap is for golf games and horse races.
This is not original thinking on my part, nor is it conveyed in the name of political correctness. I’m not interested in participating in the new I’m Offended craze. I’m just trying to point out that the language that you use not only reflects how you think, but actually affects how you think.

This brings me to my morning commute. The Americans with Disabilities Act (A.D.A., fttps://www.ada.gov/), prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities, and transportation. I catch a regular NJ Transit bus into the Port Authority Bus Terminal in NYC twice a week. The bus driver (referred to by NJT as the bus operator), takes about eight minutes to load me into the bus using a wheelchair lift. That is if the seats slide easily, the equipment works, and the operator has some facility using the equipment. Once the seats are moved to make room, my travel scooter and I occupy the space of six seats.

Every NJ Transit bus has this equipment, and there are very strict rules about how to handle the cases where this accommodation under the A.D.A. does not work right. After the operator picks me up and continues on their route, they call the pickup into their control center. When conveying this information they do not refer to me as handicapped, disabled, or a wheelchair (hey, there is a person controlling that wheelchair!). Instead they tell their dispatcher, “I have picked up an A.D.A. at Chestnut Street in Garwood.” How’s that for an invented word that carries no excessive baggage?

I find this creative and amusing. As I stated before, I’m not a willing member of the I’m Offended club, especially when the goal appears to be accuracy without giving offense.

Monday, May 15, 2017

Cripple Crapper Roulette

Some people regularly play cripple crapper roulette. When they enter a public restroom they look both ways, and if there is not a wheelchair in sight they head straight for the stall specially designed to accommodate people with disabilities. If I ride my scooter into a restroom that has two urinals, one regular sized stall and one cripple crapper, the only other person in the facility will be an able-bodied man standing at the toilet in the stall with the grab bars, and peeing on the seat (Lord forbid he should touch it).

Most of the time there is no penalty, but every once in a while he has to avert his eyes, and slink out past a gimp waiting to use the single restroom fixture designed for their use. The wheel sometimes hits the 00.

I call it the cripple crapper for three reasons:
  1. I dislike the term handicapped stall because a person with disabilities is not handicapped or disabled—words matter
  2. I have been fond of the poetry and alliteration of the sobriquet cripple crapper even since I first heard it used by Daniel Lawrence Whitney (Larry the Cable Guy)
  3. Because I can. It is hard to criticize me for political incorrectness in this arena.

But back to our roulette player. Why does he do this? I haven’t done extensive research, but then again this is a blog, not a juried research paper. I speculate:
  1. One stall is larger, less claustrophobic with more room for luggage (in airports), and possibly a bit cleaner since most civilized people avoid it when other stalls are available.
  2. The stall is usually at one end of the row. It is better to sit next to one other person rather than two.
  3. There just aren’t that many people with disabilities for all those luxurious stalls. The odds are good.

Many people with disabilities have written many treatises on civilized restroom behavior. It may get boring, but it really affects us in very real ways. If your parents failed you by not teaching you these things, try to incorporate these behaviors into your restroom routine:
  1. If possible, leave the cripple crapper free. If the restroom is crowded, by all means use every stool (The Port Authority Bus Terminal in NYC locks these stalls, and the attendant opens them for bona fide users).
  2. Your aim is not that good—pick up the seat. If you must pee on the seat, do it in one of the standard stalls. At least most people have a choice of whether to use a stall or pass on it. People with disabilities have no choice.
  3. Have the shame to apologize if you come out of the stall and find me waiting impatiently on my scooter. Then go out and apologize to my wife and explain why I had to wait longer than anyone else for my stall to be free.
  4. Then go apologize to the parents who really did teach you better.


The office I work in just moved to a new building—probably the highest rent office space in NYC. High class companies with high class employees, right? Well, two of the last three times I used the men’s room, the cripple crapper was occupied. Thankfully, it was being used respectfully, but it was the only fixture being used of the seven available. It will take a few weeks, but the male occupants of the 29th floor will eventually figure out that the local odds of cripple crapper roulette have dramatically changed.

Monday, April 24, 2017

Pain in the Ass

Pain in the Ass

Last week I broke another New Jersey Transit bus. Not really, but the bus would have been just fine if they hadn’t stopped to pick me up. The driver, who has successfully picked me up many times, extended the wheelchair lift, lowered it to the ground, and then tried to cause it to ascend to load me into the bus. It would not rise, with or without me on the lift. This bus was now disabled (see what I did there?).

Being rush hour, buses are apt to arrive at the stop every 10 minutes or so. By NJ Transit rules they seem to need to get me on the next bus if their first attempt fails. With everyone rushing off this bus to the one pulling up behind it, I held back to wait for the following bus. I take up six seats, and the driver would have been forced to expel people from an already packed vehicle.

As one of the passengers hurried past me from the bus I broke to the bus he hoped to take, he muttered under his breath, “Pain in the ass.”

I could have charitably assumed that he meant the situation, and not me in particular. However, I am not one of the 36 tzadikim (think Mother Teresa), nor could I get any of you to buy the concept that the remark was not directed at me. With no other real options, I just lamely shouted “Thank You” at his receding back. Then, thinking it through, I realized he was right.

I am not offended. Many people actively participate in our new national pastime—being offended, either as a member of some ostensibly oppressed group, or in support of someone with such a claim. I prefer baseball (go Mets). However, I won’t apologize for being a “pain in the ass.” Deal with it.

The Libertarian in me is no fan of overreaching government regulation, but I unashamedly (if hypocritically) applaud the Americans with Disabilities Act. It provides a consistent universal set of guidelines that force you to put up with small “pain in the ass” inconveniences (reserved parking spaces, access ramps, special restroom accommodations, short delays on your commute) to allow me to enjoy enhanced access to the world you enjoy every day. Not only are most of you delighted to do this, but it makes you feel good that we, as a society, have made this a priority.

So, thank you all for “dealing” with this unapologetic “pain in the ass.” Thank you for holding the door, and thank you for offering to help, even if neither of us can think of how that might be accomplished. And to the “gentleman” whose commute I so rudely delayed, I hope you have a better commute tomorrow. Not everyone can contribute to the thin veneer of civilized behavior the rest of us struggle to maintain.



Sunday, April 3, 2016

Kelly Takasch's Birthday Event

Kelly Takasch has used her birthday as an MS fundraiser for the last seven years, raising over $35,000 for NMSS. She gets a surprising array donations of goods and services to raffle. This year she had beer tastings from two local distributors, and participation from NJ Paranormal. Entertainment included a guitar player/singer, karaoke, and me giving a talk on MS. She's really quite something.

Text of my presentation:

_____________________________________

Good evening. My name is Aaron Cohen, and I was diagnosed with MS somewhere between 1976 and 1978. Aaron, you ask why don't you have a precise date for when you were diagnosed? Things were done differently back then, but we'll get to that in a moment.

First, I'd like to thank Kelly for inviting me to speak this evening, and I'd like to congratulate all of you for coming out to support her and all of us with MS. Now, we always need to start out a presentation with a joke. I took a presentations seminar back in my AT&T days, and the instructor demonstrated this by telling a joke that’s absolutely not appropriate for tonight. If you want to hear that joke, see me later.

A man rushes into the veterinarian’s office, holding and obviously dead parakeet. “Doctor doctor, please help my Petey. I found him lying perfectly still in the bottom of his cage. The doctor replied, “I’m sorry sir, but your parakeet is obviously dead and there is nothing I can do.” Well, that didn’t satisfy the grieving pet owner, and after much begging and pleading the doctor agreed to take another look. He laid the parakeet down on the examination table, and brought out a big black Labrador retriever from the kennel. The dog walked over to the examination table, sniffed at the bird and walked away. “The dog says the bird is dead.” Having still not convinced the pet owner the vet brought in a Siamese cat that walked back and forth across the table several times before jumping down and running back to the kennel. The doctor said, “the cat agrees that your parakeet is dead.” Finally convinced the man asks the vet what he owes. The vet says, “that will be $1000.” “A thousand dollars protests the man, that’s an awful lot to charge for telling me that my parakeet is dead.” “Well, says the vet, the office visit was $100, and the other $900 was for the CAT scan and the lab test.”

What do you know about MS? You probably know more than I knew when I was diagnosed. When you leave here this evening I hope you know a lot more, and have a better appreciation for why we must cure MS now. I could give you a lot of facts and figures about MS and a long list of symptoms that characterize the disease. I could tell you how the National Multiple Sclerosis Society was formed 70 years ago in March 1946 by Sylvia Lowery and 20 leading research physicians with the goal of understanding MS and finding a cure. I could tell you how it took 47 years before  Betaseron – – the first definitive therapy for MS reached the streets. We could talk about the progress since 1993, or the fact that between 1946 and 1993 another 3 1/2 million people contracted the disease. But your eyes would soon roll back into your heads, your minds would wander, and even I would be bored. Instead, I will tell you a few stories.

In the early 60s, I must've been about nine years old, I had my first exposure to multiple sclerosis. My parent's good friend, Sy Zinderman had contracted MS. Uncle Sy was in his late 30s, father of three young children, World War II veteran with a promising career ahead of him. We were visiting, children playing in the living room and adults sitting around the table in the kitchen drinking coffee. I observed uncle Sy battle a full arm spasm while the other adults watched with growing concern. It seemed like his arm and just taken complete control. I was horrified. No one actually talked about MS. It just wasn't something that was spoken about. A few short years later Sy could no longer live at home, and was admitted to the VA hospital for care. In 1971 he died, completely bedridden and unable to take care of himself for several years. During those years my parents visited. My father was always agitated when he returned from those visits although he tried to hide it. When I was a teenager he said to me that being confined to your bed unable to take care of your basic bodily functions was no way to live. He was sure that his friend Sy regretted having not taking his own life while he still had the physical ability to do so.

That was the sum of everything I knew about MS when I was diagnosed. MS was listed by the insurance companies as a fatal disease, and doctors did very little to dispel the specter that diagnosis with MS was an eventual death sentence. Doctors, you see were scared of MS. They didn't understand it, couldn't predict its course or outcome and had nothing to offer the MS patients except possibly a course of steroids during an exacerbation. As a direct result of the efforts of the National Multiple Sclerosis Society, we know more now, that knowledge is deeply embedded in our medical education system, and there are a plethora of treatments available especially for the newly diagnosed. BUT THERE STILL IS NO CURE.

Every year my wife Laura asks permission from friends and acquaintances with MS to include their name on a list of people for whom her team walks on the team web page and letter to sponsors. This year I asked her to add Sy Zinderman’s name to the list

My own diagnosis spanned several years, and was handled much differently than it would be today. It took several years because even if the doctors I saw for various reasons were informed enough to suspect MS, no one wanted to be the one to actually utter those words. It didn't really matter they figured, there was nothing to be done anyway. They temporized by telling me nothing, and hoping I would go away before it needed to be confronted. My timeline went something like:
·    1974 - tingling in my left arm and hand - University Health Services had no wisdom for me. "Let us know if it gets worse.".
·    1975 - Optic neuritis (small blind spots in my field of vision). The ophthalmologist Health Services sent me to opined that it would probably go away over 6 months, but it might not. Nothing much to do for it if it did not get worse. Today, optic neuritis gets you an instant referral to a neurologist, and an MRI. MRIs were not used to diagnose until the mid 1980s (first one in 1981)
·    1976 - referred to a neurologist who did a lumbar puncture (spinal tap). He found white blood cells in my spinal fluid, and suspected MS. I was not told. I was 23 years old and married. My parents interceded and decided that Laura and I didn't need to be burdened with this information. It was tentative, devastating, and there was no treatment. My symptoms eventually went away. I was willfully clueless, and just happy that the headache from the spinal tap went away.
·    1979 - I had some gait problems. Limping on my right side. My internist had done graduate work in neurology and sent me in to his mentor at Columbia Presbyterian for what was going to be several days of testing and evaluation. By the time I had checked into the hospital my limp had mostly resolved. The doctor sent me home. He told me before I left:
o   If the symptoms had gone away there was nothing to treat. If they came back we could treat it with a round of steroids.
o   I had MS. There was no telling if I would ever get symptoms again, but his years of experience told him that it was MS. (Now my parents tell me that it had been suspected).
o   It was not necessary to inform anyone, especially at work. Some insurance providers were pretty aggressive about striking people with MS from their rolls.
o   Get plenty of rest. Avoid stress. Cut back on my extracurricular activities. Conserve my energy.

I did as directed. Following the last bit of advice thankfully only lasted a few months.

A few years later my doctor sent me for a CAT scan. I had to go to NYC. When I got there the scanner was down. I went back three weeks later. My head wouldn't fit in the machine--never got a CAT scan.

Keep in mind that the reasons this is handled so differently today is the direct result of money given the NMSS over the years, and used by them to sponsor:
·    public education demystifying MS
·    education of medical professionals 
·    and especially—basic research. Grants for basic research from the National Multiple Sclerosis Society come with the stipulation that all research must be shared in order to expedite the creation of knowledge in the race to find a cure.

I am a very lucky man. Despite the obvious disabilities MS remains mostly an annoyance. A royal pain in the ass to be sure. I’m not looking for your sympathy; sympathy in more than a small quantity is not empowering. I am however looking for your help and participation. Just by being here you are helping spread awareness about MS. Every dollar counts, and more importantly, every person who donates even a single dollar is now someone who “gets it.” If everyone here could ask just three other people to make a small donation, the impact would be tremendous. Think about it.

Let me tell you why I say I am a very lucky man.
·    My wife of 41 years continues to stand by me. I worry her constantly, but her steadfast help makes many things possible that I couldn’t conceive of doing alone. This is very important. The divorce rate is especially high for people with MS
·    For every deficit, I have a strategy.
·    When my oldest daughter was born, my only goal was to live long enough to see her bat mitzvah. I now have three married children, and four grandchildren.
·    I’ve never missed a day of work because of MS. My scooter and I take New Jersey transit bus to New York City twice a week to one of my clients
·    I have had an active volunteer life (so much for resting at home), participating in community organizations and leadership.
·    I have suffered no cognitive deficits, and everyone is very understanding if I fall asleep in an after-lunch meeting
·    I work out at the gym twice a week, once with a trainer and once alone.
·    My wife and I enjoy long walks and bike rides with me riding on my hand powered tricycle.

The thing that bothers me most about having MS is the amount of time I must spend thinking about things that other people take for granted. From always knowing where all the restrooms are, to strategizing on how to get the cup of tea from the counter to my easy chair without making a mess.


I’d like to conclude by thanking each and every one of you for participating in this great fundraising event. Both your participation and your contribution helped the National Multiple Sclerosis Society in its efforts to support, educate, and most of all find a cure for MS. Please talk your friends about the fun you had and what you learned at this event. Post about it on Facebook; tweet about it. Help us push back against ignorance, and work toward a world free from MS.