BLOG : Woman With ALS Throws Celebration Before Doctor-Assisted Suicide in California

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 against 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 Assistance Program" which in New York City is administered largely by Concepts of Independence, but there are versions of CDPAP 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.

Written by Fern Cohen

Read more from Fern Cohen on her incredible blog Forced to Sit Still and Shut Up – Life Before and During ALS.