Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in Califiornia

A number of people have forwarded this article and video to me  
Anyway, let me summarize:

A 41-year-old performance artist with ALS/MND/Lou Gehrig's Disease for roughly three years, invited her closest friends -- 30 or so -- to a party celebrating her life.  She was up front about the fact that after the party, she was going to be one of the first people to take advantage of the passage of California's assisted-suicide law.  California now joins Oregon in allowing doctor-assisted suicide.

Betsy Davis -- the woman in the article -- looked vibrant and still beautiful.  Who knows how much longer she would have had if she didn't die when she did?   I thought of where my head was at,  three years after diagnosis, and I was pretty despairing myself.  My disease had progressed pretty fast in the first few years.  I am not sure which abilities Betsy had lost before her death; certainly as an artist, the loss of use of her hands would have been terrible.  I am blessed with the ability to use my hands, which enables me to use the computer, if not,  keeping me from dropping a lot of things.  At three years into diagnosis, a doctor had estimated that I had 12-18 months left; 9 years later, I am still here.  Obviously, my doctor was wrong; at the rate of deterioration at the time [November, 2007], he figured the downfall would be at a steady rate.  Who knew my progression would slow down almost to a standstill?  I have been very lucky.  If I chose doctor-assisted suicide at that point,  I would have missed at least 9 more years of life, along with America's first African-American president, possibly the first woman president, TV shows like "Breaking Bad", the iPhone, the iPad, and a whole virtual world of ordering food, shopping and speaking to friends all over the world online.

And then there is that word -- "suffering" -- which has been repeated a few times in the article.  Enemies of doctor-assisted end-of-life decisions argue that suffering is a relative term.  Am I suffering?  The short answer is yes -- sometimes.  Did I suffer before ALS -- I would have to answer a louder and more resounding yes.  I despaired after broken relationships, broken bones, lost employment, deaths of loved ones.  I could think of a hundred times I woke up after a night of insomnia and questioned if I had the strength to go on.  I received a horrible diagnosis 12.5 years ago; I was basically told I was going to die.  If New York had a law legalizing doctor-assisted suicide, I could have ended it right then.  I could move to California or Oregon and do it right now.  I choose not to -- right now.  I can't speak for anyone else.

Without getting into religious beliefs, we all have choices.  Who knows how I would feel if I were in physical pain, or my disease were causing pain to a spouse and children?  I once knew  a woman with ALS who prayed to God to hasten her demise because each month in the nursing home was eating up $13,000 of her grandchildren's inheritance and she had neglected to set up some kind of trust for them. Or if I didn't have medical insurance?  Some might say that I am bleeding Medicare unnecessarily and that I am one of those who are causing Medicare to run out of funds.  I welcome them to dig up 30 years of pay stubs to add up the colossal sums taken out of my checks every two weeks, especially when I worked overtime in my airline career. They are entitled to think any way they want because they don't walk in my shoes or roll in my wheelchair.  

Once when I was about one year into ALS and still driving and walking with a cane, a close friend was relating a story about someone she knew who had died in an auto accident.  She said it was just as well that her friend had died because the doctors said he probably would never have walked again if he had lived.  "Better dead than confined to a wheelchair" she added.  I cringed because I knew sooner or later I would be reliant on a wheelchair myself.  Does she think I am better off dead now?  I don't know; I don't think so.  If I reminded her of what she said that day, I'm sure it would embarrass her.  Who knows if I would have agreed with her a decade before?  We all live in our own little worlds and sometimes never imagine what could happen.  When we think we could never go on, we do.  Ronald Reagan was aganst stem-cell research so I'm told.  Many years later, his wife Nancy testified before Congress that stem-cell research should be ramped up to help people with Alzheimer's -- like her husband Ronnie.

My party of goodbyes has happened more gradually over 12 1/2 years.  In the early stages, I had visits from friends who promised to come see me again and never did; this was their way of saying goodbye.  I had friends and family who came by often and stopped,  either because they couldn't handle my situation anymore, or more often because of their own life changes -- marriage, babies, relocation.  And I am thankful for some people I would never have met and gotten close to,  if I hadn't had ALS, and for the people who stuck by me all the way.  It's true that in times of difficulty, you find out who your solid friends are.  I had hundreds of people in my life because of my two careers and my volunteer activities.  By necessity, I have weeded out a lot of toxic people.  I don't need a party and for now I choose to hang out a while longer.  

Probably the most important reason I continue to thrive is my care.  I not only still live by myself in my own apartment but I am able to hire, fire and schedule my own personal assistants through a system called "CDPAP -- Consumer-Directed Personal Assistant Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CD-PAP all throughout the state of New York and in some other states as well.  This not only keeps me out of a nursing home, but relieves me of the constraints imposed by many home-care agencies -- like sending strange aides at their whim and even restricting how far away from home they are allowed to go with their consumers [patients].  I have had the same four aides for a decade or more and they are like family to me.  They cover for each other in case of illnesses, vacations and emergencies.  If not for CDPAP, I am sure I would feel differently about my situation and the will to go on.

Coming from a Dark Place; Wish I Had Seat Elevation

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

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

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

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

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

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