Thursday, September 19, 2019

Living with ALS as it progresses

Daughter Dana Swarth and Marilyn 2016
            This week is my 67th birthday. I suspect I’ll have another couple birthdays unless my condition changes drastically. Since my diagnosis of ALS three years and 4 months ago, every day brings small challenges and my life has ups and downs on almost an hourly basis. In so many ways, I can’t complain. I have a close and loving family, dear friends around the world, a bank account balance that’s positive, and a prestigious academic position. I still enjoy eating good food, can manage a nice glass of wine or one cocktail, can talk, think, and type. I have relatively little pain—my butt gets sore when I sit in one position too long. I just need to stand and shuffle.
Marilyn (with necessary walker) and Maryjo Brounce, UCR EDGE event 2017
            For the past four months son Evan Swarth has been making a movie about my journey with ALS. It's a labor of love. I had the idea of a 5-minute video. He turned that into a major movie production for him with his Apple computer, iPhone, and a Sony digital camera. We recorded over 80 minutes of conversation with just me alone. He interviewed several others. The result is a 25-minute documentary ( that I hope will inspire and inform you. People ask often how they can help. Not only do we enjoy getting casseroles and homemade cookies, but it means a lot to me for people to read about ALS and learn something about the disease. Your support buoys me—daily. Here’s what a progressive disease means for me now.
Every month for 3 years I've been tracking the disease progression--I'm lucky

            The concept of privacy means different things to different people. It’s enormously important to me as I transition from independence to dependence. My privacy for many things is still intact, but it’s eroding in fits and spurts. I like to spend time alone and always have. Even though I might present as an “extrovert”, I need time by myself to connect with my inner self, think things over. 
            Privacy also concerns what other people know about you. Early on, I decided that my medical challenges were easier for me to disclose than to try to keep them private and quiet. For a person who was physically active and independent, it bothers me that people might think that I’m weak or don’t take care of myself. As my physical frame slumps, and my muscles whither away, I’d much rather people know what I’m facing.
Marilyn and Chris, Death Valley 2017, it was easier to travel then
            Life’s most basic needs are no longer done in privacy. Showering requires help to get in and out of a shower chair. Although I can still lift my arms to wash everything, I can see the horizon approaching for a shift in self-sufficiency. My husband is, at this point, the only person assisting me au natural. With others, I don a big T-shirt to cover up 90%. I never was very comfortable with public bathrooms at the YMCA. My modesty remains intact. Shifting away from modesty and privacy requires serious personal adjustment.
Evan with Fogel Endowed Chair of Geoecology
            Using the toilet, a subject NO ONE discusses past the age of 3 or 4, is something I find myself discussing with an ever-wider group of people—with this blog now the “world”. I am still able to maneuver to the john on my own, but require ever more complex assistance with adaptive devices. At UC Riverside, Jeanette Westbrook, assistant for the EDGE Institute, and I have a procedure that is carefully choreographed. It involves my standing and sitting four times and two rides in the wheelchair. I use what I term the “Fogel Endowed Chair of Geo-Ecology”—an elevated potty seat that Jeanette first places over the commode allowing me to then independently sit, do my “business”, and then stand. The restroom door is shut, but no longer locked after postdoc Kaycee Morra needed to climb under a locked door to rescue me. When Chris and I travel, we have a folding potty chair in the back seat of our car and a transfer belt in case I need help standing. The bathrooms in two of our houses have had accessible risers and handles installed. I treasure my privacy here. It will require patience and strength for my caregivers when this privacy ends. It will require an adjustment to my physical sphere. It will be tough.
            But I’m still kickin’. In the past couple of years, I’ve lost several good friends and family to cancer, heart disease, stroke, and despair. This troubles me. I was the person who was supposed to be dying—not those healthy people. Therein lies my conundrum. I have a wealth of good things in my life balanced by the very real decline heading towards the end of life.
            I have no fear about the end of my life.
            I fear—sometimes crippling fear—about the journey I’m going to have to take to get to the end. The fear isn’t always rational. Chris is in this relationship for the long haul. Dana and Evan are in touch constantly. They’ve responded by changing their lives around these past three years. My wish is for them to live happy productive years and get their lives established. I’ve hired the first of probably many home health caregivers. The adjustment to a “stranger” taking care of your most intimate—and private—needs takes getting used to. Keeping fear from holding sway over my days requires vigilance. Mastering fear requires distraction—writing helps—music works.
Dana, Marilyn, and Evan, Alaska, 2017, Roughrider wheelchair
            My slow decline has had its benefits. I’ve managed to help students, colleagues, friends, and family with advice and mentoring in this time I’ve been granted. I’ve provided some financial help to those in need. I have the time to wind my career down slowly, methodically, like I’d like it to happen. I’ll be able to say goodbye, something my sister wasn’t able to do.
Lab group: Jon Nye, Jeanette Westbrook, Bobby Nakamoto, Kaycee Morra, Patrice Barnett, Ying Lin, 2019
            I’ve been able to take the time to see and talk to people before the end. With visits from people around the world, the connections I’ve personally made have sustained me. The daily emails, the comments on the blog, and now this week with the release of Evan’s movie, I thank all of you for enriching my life. Even the annoying, difficult, pain in the ass situations—taken together with those good times—keep the fear in check. Thanks to all for coming along on my journey.
Seal Beach, 2019, Sand wheelchair!

No comments:

Post a Comment

Rounding Third Base and Heading Home

Cards from Franny and Flowers the Rumbles   My daughter Dana is marrying George Goryan on June 25 at our home in Mariposa...