Tuesday, May 19, 2020

Four years into ALS and still "running"

Monthly, I submit data on "how I'm doing"--a slow decline, which is heartening

“At some point, be prepared to deal with profound contradictory feelings---for example, wanting to live and wanting to die, loving others and disliking them.”  Morrie Schwartz

I am an enormously privileged person with a family that provides support, a solid-career, and economic security. What I’ve been lacking these past four years is a clean bill of health. I have a terminal illness, ALS, that has turned my privileged world upside down. In ALS parlance, we call the pathway that we take from diagnosis to death our “journey”. Mine has been a good journey for the most part, but it has taken a concentrated effort from family, friends, and me to make the journey as comfortable as it has been.

Four years ago (May 24, 2016), I received the diagnosis at University of California (UC) San Francisco neurology department. I have written about that day previously, and about how my world has changed since then. I am retiring from my Distinguished Professor position at the end of June, ready to give up day-to-day activities in favor of having more time to do things on a more simple scale. UC Riverside has been a good “last gig” and is ending out on a decent note.

Along the way, though, my journey was not always smooth nor linear. As I’ve spent more time in the realm of the disabled, I experienced first hand the trials that people who have disabilities face every day.  Even as a privileged person, getting the services I have needed to be a productive person in society has taken a constant push to be able to function as I am.

I am still able to eat all foods, breathe effectively on my own, stand and shuffle about 10-15 steps at a time, type, talk mostly normally, scratch an itch, think, drink a glass of water, drink about half a glass of wine, dial a phone number, paint a primitive painting, and chop vegetables.
Still able to wield a knife, 2020

I am no longer able to get dressed on my own, drive a car, turn over completely in bed and arrange coverings, walk anywhere easily, get into a regular car, sit on the ground, stand up without assistance, garden, hike, swim, run, lift weights, use a normal toilet or shower, open a door, cook on the stove, carry a plate, lift anything greater than a loaf of bread.

“Get as much help as you can when you need it.”Morrie Schwartz

After four years, I finally have a medical team providing support. With some of the best health insurance possible, it hasn’t been easy to find people to take care of my many needs. I now have an ALS team in San Francisco that I can meet with remotely, an ALS Care manager (Kathleen Kelsey—a star!) in Bakersfield, a palliative care team at UCSF that helps with day-to-day problems, an occupational therapist to help with practical considerations, a mobility works group who is working on ordering a power wheelchair that will take some of the burden of moving me from place to place off of others’ shoulders.
Based on what I know and what others have surmised, I should be able to live another year provided I don’t contract COVID-19. That would place me in the position to have even longer to settle life affairs.

When Chris and I decided to head from UC Merced to UC Riverside, we spoke on the phone to the disability coordinator, Marsha Marion, and discussed how a new job would work out for me in this new situation.  She promised everything to make my working life as easy as it could be. When Chris and I arrived in September 2016, I was still driving, able to lift my walker out of the back of my car myself, open doors, and get into my office and lab without assistance. With consistent and persistent pressure, I was eventually able to hire Jeanette Westbrook in early January 2017. Once she came on board, there was little stopping us.

That doesn’t mean there weren’t roadblocks in the way. After a particularly trying period, Chris found a video of UCR’s Chancellor Kim Wilcox leading a walk for disabled people and a diverse workforce. Hmmm, I thought. I wonder if he knows what’s happening down in the campus trenches. I sent a quick email, which garnered a quick response, a 30-minute visit to his office, and the establishment of a team dedicated to see that I could do my job effectively and safely. There were times along this journey when I needed to call on that team to help with doors, bathrooms, and access. Together we figured things out.

“Come to terms with the fact that you will never again be fully physically comfortable. Enjoy the times you are comfortable enough.”Morrie Schwartz

Now with COVID-19 ruling our lives, on-line presence works almost as well as physical presence. No longer should I hear, “Well, we’d love to have you join the committee, but we must meet in person.” Mornings are almost off limits for me, since it takes hours—literally to get up and ready for the day. Afternoons are better, and most things can wait until noon. It is my hope that businesses will support “Abelism”—the ability to include everyone regardless of their disability.  If there could possibly be a silver lining in all of this turmoil, maybe that’s it. See the article below.


For those with Netflix, Crip Camp is an excellent movie, funded through the Obama’s production company. It starts in the late 1960s with teenagers going to a camp, all of them in wheelchairs. It progresses through those kids' lives as they lobbied and pushed for the Americans with Disabilities Act, and got it passed. I cried at the scene of people crawling up the Capitol steps in protest. I know how that feels now and am grateful they persisted when they did.


Evan’s movie still is pertinent. If you haven’t watched it, please do.

Winter in the "Olden Days"

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