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.
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.
https://www.youtube.com/watch?v=yRhpFoUFMyA&feature=youtu.be&fbclid=IwAR33xowqvPW-VLf_0ujkMwuubGJ29X3iu7MGW9YrKxLWZgzVT8x1fKtQ9OY
I'll be "celebrating" four years this weekend. I hope you'll join me in spirit.
I'll be "celebrating" four years this weekend. I hope you'll join me in spirit.
Dear Queen, thanks for sharing! all the best and brighting days!
ReplyDeleteLuisa, an isotope jester.
Thank you for sharing the journey with us. I will join you in your celebration, in spirit, from Germany. Gin and tonics, followed by a Manhattan 😉❤️
ReplyDeleteThank you for sharing your journey, written from your hear so eloquently described as if I am talking to you. I enjoy all of your Isotope Queen memoirs and look forward to many more. Congratulations on retiring from UC Riverside as a Distinguished Professor! Enjoy the beautiful moments you have, the sunshine and the good people - family, friends, and healthcare team who are supporting you. Take care and thank you for sharing your stories.
ReplyDeleteWhat a sterling effort keeping a blog! Thank you so much for sharing your progression with us. I turn three on June 21st and I'm also blessed with a slow progression so far. But the covid-19 lock down has really set me back strength-wise as I can't go to the gym as I have for over 50 years! We'll keep on fighting this ALS together. #nevergiveup I read Tuesdays with Morrie. What a special man he was.
ReplyDelete