These past few weeks have been extraordinary. During that time, I’ve been an advocate for ALS by participating in screenings of the documentary No Time To Waste at two of my former employers. The session was basically a showing of the film, followed by a Question and Answer with myself, the Director, and two senior level representatives from the ALS Association. The response from the attendees was enthusiastic and heart warming. At one of my former employers, there were about 30 people. At the latter was over 100! At that venue, there was a showing of the film during lunch, when I was not present, then I was immediately rolled in after the film and the Director and I received a standing ovation. I was overwhelmed. As I rolled in, I said to the crowd that in spite of my years of being a bass player, I’d never received such a reception. That former employer is a biotechnology company that I heard was working on an ALS therapy and I’m hoping it has some impact on the development of the drug. Regardless, I know I had an impact on the group given their reaction to the session.
Participating in those sessions made me feel useful and that I could still have some positive impact on others. Since my illness, I knew I had to eventually retire from work and wondered what I would do with myself let alone make an impact on the world. I decided that I was going to work as long as I could, creating a false hope that working longer proved my progression was going slowly. It was really challenging for me to keep working. Yet, in spite of my descent into paralysis, I was working up until the day it became clear that my mobility was shot and it was hard to keep a regular schedule at work due to multiple doctor appointments. It was then that we decided to apply for disability insurance.
Given that, I’ll let you in on a little secret. For the last few years, all I really wanted to do was retire. Having grown up in a lower middle class immigrant family, I started working at the age of 13. I started delivering groceries. If any of you can remember the days of a delivery vehicle being a modified bicycle with a big box to put the groceries in. A normal delivery was cycling to a four story walk up and carrying the bags of groceries up four flights of stairs because there was no elevator in the building. My back hurts just thinking about it. I worked for a grocery store that was owned by two immigrant brothers, one who had Turrets Syndrome. He would randomly verbalize curses uncontrollably, until one day, his brother yelled at him saying, “Enough, mister doity mouth, get out of my store.! ” You can’t make some of this stuff up. Anyway, from there, I kept working at odd jobs including a dairy store (a Brooklyn version of a bodega), a light bulb warehouse among others. One job I had during a couple of years of college was as a leather craftsman. It was my own business and I handcrafted leather belts, wallets and handbags. My first job out of college was as a clerk on Wall Street, where I worked until I finally got a teaching job. After teaching for two years, I started going to graduate school at night, continuing teaching during the day until I finally graduated, after which I decided to move to California. After two years of teaching in California, I started working in high tech for the rest of my career. Fifty years of working kind of took its toll. In spite of it all, I had renewed energy to retire and do more of what I enjoyed before, including travel, building more bass guitars, spending time with family, bike riding and volunteering, etc.
But, as we all know, life has its ironies. Even before I had a chance to retire voluntarily, I contracted ALS, and life changed completely. Yet, in spite of it all, I still have the audacity to keep going as far and wide as I am able, and retain the wisdom to know my physical limits.
Another major event for me during the past few weeks was attending my annual Men’s Weekend. The same as last year, we went to Pajaro Dunes, a seaside resort between Santa Cruz and Monterey. There were nine of us this year. It felt like every other year we’ve been together. We had a beautiful house right on the beach. I was able to rent a special bed to keep me comfortable at night, hired a caregiver for the morning to get me up and ready for the day (with extra help from my friends), brought all of my necessary equipment and sundries. In spite of all the things that could have gone wrong, such as grossing my friends out with certain tasks associated with my care, getting sick, having my equipment fail, have an accident, and on, I still had an amazing time with my friends. They fed me, mixed me drinks, helped me smoke cigars, played dominoes, drove my chair, and the list goes on to yet another wonderful time. And none of them batted an eye. It was like it ever was.
I was reflecting on this situation in terms of what would it be like if I took the opposite approach and gave into my worries of “what if’s” and decided not to go? I believe I would have felt a hole in my heart and spent time feeling sorry for myself, angry, disappointed, and just plain sad, knowing I gave in and gave up. In spite of all that could have occurred, I found what makes it all possible. It comes down to being vulnerable and open to others helping me. I’ve heard a number of stories of people in my condition that have turned down help from their friends, thus driving them away, leaving themselves alone with no support system and losing out on what every day offers as an opportunity. I love studying human behavior and I discovered that our brains award us for helping others with a shot of adrenaline, whose effect is to make us feel good. On the other hand, when we are rejected by others, we get a helping of dopamine, which triggers our alarms of an imposing threat, thus drawing us away from the situation of being rejected. This is called “social pain”. Interestingly enough, the region of our brain that lights up when we experience social pain is the same place that lights up when we feel physical pain. No guessing here why we have a tendency to withdraw from these situations to save us pain. Where I’m going with this is that when we close ourselves off from others because of embarrassment, pride, denial, etc., we don’t think about the reactions of our loved ones and friends of our withdrawal from them. What we’re doing is causing them social pain rather than give them the opportunity to feel good by helping us.
So, lesson learned. In spite of any worries or embarrassment you might have when you need other’s help, open yourself up, drop your guard, and ask for help. It’s truly a win-win proposition.
We all have challenges. Lord knows I shared many of mine with you. From the mornings when it takes about three hours to get me out of bed to start my day, through the afternoon of feeding me and getting me in and out of my van, through the evening of getting back into bed, I face some very basic challenges. Throughout the day, there are psychological challenges I face, between how the hell did I get here, to how long is this all going to last? I do think about what the end might look like. I’ve been told that it should be peaceful. We should all be so lucky. But in spite of it all, I’ve decided to take control of my future, no matter how long it lasts, and make the most out of every day. I’ve always been a lifelong learner and don’t plan to stop. A few weeks ago, after the screening of the documentary I mentioned above, someone came up to me afterwards and told me that a phrase I mentioned in the film really stuck with him. It went something like “Every day I am grateful because I have a day.” What I meant is that I am going to make the most out of the day I have, in spite of all of my challenges. When I was “normal”, I would worry so much each day about whether I can get everything done that I wanted to that day. It’s about prioritizing what is really important to you and focus on those, despite the external pressures you might feel. All will get done as long as you stick to the basics. Prioritize the important stuff first, like family and time to rest, and enjoy what life has to offer.
Before I’m accused of rambling, I want to leave you with a short poem from Rainer Maria Rilke. It showed up at the end of the movie Jo Jo Rabbit.
“Go to the Limits of Your Longing : “Let everything happen to you: beauty and terror. / Just keep going. No feeling is final.”
More to come…