In spite of it all…

At a screening of the documentary

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.

Pajaro Dunes Men’s Weekend

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.

On the deck of of the house where we stayed during Men’s Weekend

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…

In spite of it all, I try to retain some color in life.

23 thoughts on “In spite of it all…

  1. In spite of it all, all the what ifs…no convenient handicap parking, no accessible ramp to the porch, no available table, or table with enough room to accommodate the wheelchair…I am so glad we ventured out that day to Sausalito and had a fabulous time on a beautiful picture perfect day ❤️ Your optimism inspires always


  2. As always, wonderful insights on the true meaning of life. So glad you saw Jojo Rabbit and I hope you loved it as much as we did- I even watched it again on the flight to Quito! And yes, the quote is perfect in so many ways. ps, who did the portrait?


    1. “My friend Hal is a whiz with technology…” Glad I’m good at something ;-). The original picture was taken just about one year ago at Everett and Jones BBQ near Jack London square in Oakland. App is Deep Art Effects.


  3. Congratulation to you the film star! Great news about the reception you had and that your journey is continuing to share any other important chapter in your life journey.
    I love getting your wacky and ‘ right on’ words of wisdom in my inbox!
    La Chaim!


  4. Dearest Harry,
    I can’t tell you how much I look forward to reading your words. You write so fluently, eloquently and your words leaves me with so much to reflect on. Thank you for being the Harry that I knew you’d be, all those years ago when we met at Camp Lymelight.
    Love Always,
    Barbara Nuzzi (Berger)


  5. Harry, I look forward to your blogposts (Your blog has been one of my startup tabs for a couple of months now). Even though I’m on the other side of the country, When I read your posts I hear your voice (sometimes with some a little Brooklyn accent) and, I feel you’re talking to me. Glad we got to see you and AM for a little while last month.

    I think of you a lot. You’re definitely a north star, not only describing your journey but pointing a way through this uncharted terrain.

    Love you



  6. As always Harry, your words inspire. In spite of it all, you remain a beacon of light and powerful inspiration to so many. Yasher Koaha on another brilliantly written piece my friend!!


  7. Once again, Harry, I thank you for the blessing of your words and the depths of feeling behind them. I don’t believe I ever commented on the documentary. What a gift you have given all that will see and learn from it.

    Continue to be strong and know how much you are loved.


  8. Hi Harry, as many have said, your writing sounds just like you (even with a Brooklyn accent). It’s amazing when I think about how much work it must take to write these blogs with your software. You always have insightful and thought-provoking things to say. You have such a wonderful, strong and loving group of people in your life (especially your family!). I feel so grateful that I have been part of your journey from many years ago until now! I was thinking of you the other day when I was in SF at UCSF waiting for Fred to have an MRI. I wandered around the huge Mission Bay campus (that wasn’t there when I lived in Potrero Hill !), and sat in a park right by a huge, beautiful lecture hall donated by Genentech. I smiled thinking of the short time I worked there because of you! Always grateful for your generosity! We send you many hugs.


  9. Thank you for your honesty, your vulnerability, your humanity. You teach all of us about life – what matters and perspective. At the MW you brought us together by allowing us to help take care of you. You empower, enable and uplift us all. Sending you love.


  10. Harry, I’m like the butcher who backed into the meat grinder — I’ve gotten a little behind in my work. Ba dum dum. You have the audacity to continue to believe you can change the world, and it’s a beautiful thing, my friend. Being with you is being alive. The little chores — just details. Your focus on the positive, while acknowledging that, actually, it’s not all positive, is how I want to be. Show us how, Big Daddy, show us how. I so much appreciated your kindness at the time of my mother’s death. Mom always said, “None of us makes it out of this one alive, Chris.” Right again, Mom. She always loved seeing you and Mary Ann. She always knew the connectors. Much love bruddah.


  11. Harry you have the most positive impact on others, you have no idea. Really loved this post and the pics are just beautiful.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s