It was just after my 60th birthday, my primary physician scheduled me to visit every specialist imaginable to make sure my engine is running well. Every one, cardiology, dermotology, gastrointestinal, pulminology, urology, proctology, all agreed I was in good health. I worried because there were two things that were possibly a problem in the future. First, I have arthritis in my knees and my family has a history of heart disease. My orthopedist said when my quality of life changes to come back. My cardiologist said all looks good but let’s put you on a statin just in case. A year and a half later, everything changed.
During our early morning walks with our dogs up and down the hills of Orinda, first my right foot starting dropping involuntarily, then I tripped over my foot, then my thighs became weak as I walked up the hill. I finally went to the orthopedist to agree to a knee replacement. I was told, it wasn’t my knees. I was referred to MRIs and a test with a neurologist. Finally, in January of 2018, I was diagnosed with Amyotropic Lateral Sclerosis, or ALS – also known as Lou Gehrig’s disease. That day was truly the first day of the rest of my life. I now know what that cliche means.
Every day is a new day
So now you know how it happened. I can say this came out of nowhere, literally – no genetic markers, no overt symptoms, no family history – just went from straight from health to disability. I have a degenerative disease, meaning gradually my muscles lose communication between the brain and the nerve ending in my muscles – so I get weak and the limb stops functioning. Right now, my right leg has stopped working and my left is slowly going that route. How does this play out? Well, simple tasks like walking, reaching for things, going to the bathroom, getting dressed, getting up from a chair are all very challenging these days. I have a manual wheelchair, a power wheelchair, an accessible van, transfer board, commode, walker, among other equipment necessary to get through the normal tasks of the day. And as each day might cross a new threshold, then a new problem needs to be solved. The good news, we’ve been doing it. Mary Ann is my rock as she has been the one who has turned into my caregiver and chief problem solver. I also found out that through all of this, I am still me.
Congratulations, you’ve gotten through the toughest part of this blog, but it was necessary for you to have the context for the remainder of this blog. My hope is that it becomes a positive and inspiring narrative of resilience, hope, and grit. So read on and join me on my journey.
I know I gave the beginnings and progression of my ALS a light touch, but I believe most people know what it is and how it effects victims. I didn’t want to bring folks to a point that it might feel yucky reading the rest of this blog. I can’t avoid discussing my current symptoms since it defines what I can, and cannot do these days so it will more than make up for how its running it’s course. Truth be told, I heard about the disease years ago and thought this would be the worst possible disease one could get. I never knew anyone with it. I did know people with CP and MS, but not ALS.
Let me go down the path of my journey by discussing what the disease has taken away, but also what it has brought to me. What it has taken was life as I knew it up to the point where I could no longer walk or get on my bicycle. It stopped me from taking the BART to work, driving my car, and especially riding my bike on a beautiful spring morning. It took away visions of traveling to places I have still yet to explore. It also changed my relationship with Mary Ann. She has a new role as caregiver – not what we planned as our retirement plans. All the retirement money we saved now goes to ways that provides quality of life for me, again not what we planned for. It has taken my freedom to grab something off a table, get dressed, sleep on my side, among other simpler tasks. I’m in a wheelchair full time.
I have to say this condition has also given me something, too. It has brought out the overt love and kindness of my family, my friends, and my extended community. It has humbled me to my core values and actions. It has forced me to accept the offerings of others. I’ve learned people need to help and I have learned I’m in the position to help them. It has also reset what I am able to do in retirement which is to curb expectations I had in the past and create new ones, closer to home.
One thing I learned is to not put your life on hold. Since my diagnosis, I’ve been to Palm Springs, Miami, and Cuba, played gigs in my band, and have had many great times with friends. My new sense of urgency has me not turning down any opportunity to be with family and friends. I’m learning the cruise I never took is not as important as being with those you love and who loves. Substituting events is also a new part of my new life. For 30 years, I’ve organized cross country ski trips to Yosemite with a close group of friends. Since my ability to walk has left me, instead we rented a beach house this year and had an exceptional time. It’s now about tradeoffs without comprising the quality of experiences.
My Cuba Trip
Cuba has always been a bucket list destination. I finally got the chance to go with 10 other close friends on a customized 12 day tour just for our group. I went in with eyes wide open knowing Cuba to be a not very handicap accommodating place. I kept reminding the travel agency I was in a wheelchair and they kept assuring me of a good time. Of course, when we all got off the plane from Miami, all bets were off. It became a series of problem solving from then on. If it wasn’t being with close friends and their willingness to make it happen for me, I honestly don’t know how it could have happened at all.
Our first problem was getting me on and off the bus which had no provision for someone disabled. They managed to rig a process that included a metal meshed chair. They would put me in the chair, then three guys outside the bus hauled me up, and there guys on the bus grabbed me in and steadied me. Imagine that 4 or 5 times a day.
Once we got to a destination, I had to decide if I was going to join the group. Hiking, climbing, swimming were out of the question. Paved roads and buildings were fine. Everywhere we went there were obstacles, as well as Cubans who were willing to help. It is a shame on us how we’ve held back the Cubans with embargoes. They were friendly, helpful, and caring.
Mary Ann and I were well prepared for the trip with pee bags, commode, wipes, adaptable clothing, among other things. We used transfer boards to move me from the wheelchair to the bed, commode, bed, and transfer chair used to get me on the bus. I wasn’t prepared for all the lifting to get me in and out of restaurants, but my friends came through every time.
One very special time for me was at the Don Pepe hostel in Playa Larga, or the Bay of Pigs. They were incredibly accommodating to me. One person especially, Yozvany, became my angel. He made sure I was cared for, to the point of helping me in and out of bed, pushing my chair through the village introducing me to his friends and ensuring I was having a great time. This is how the Cubans are.
I am so glad I went. I would encourage everyone, with or without a handicap to go. It’s worth the pains and challenges.
Where I am now
Now is about being and trying to stay alive. It’s about being grateful and living it up to the fullest. Even though my hands are weakening and breathing is a bit labored, it doesn’t stop me from getting out, being with friends, going to a movie or ball game. This past week, I spent time with dear friends and took them to Yosemite for their first time. It was magical- who says you can’t create experiences while dealing with illness?
I believe we only limit ourselves from what we can experience. More to come …