My living eulogy… (A first draft)

What heaven might look like to me.

Mark Twain coined a phrase many of us have heard before, “The rumors of my death have been greatly exaggerated.” Don’t panic, I haven’t heard any of those rumors of late, unless people are doing a really good job of keeping them from me. Regardless, I’m here to say I’m still alive as of this writing and still trying to make each day count, as I hope you are. The reason I’m saying all of this is because I don’t want to worry you given the title of this piece. Any time I’ve heard the word “eulogy”, of course I’d think “who died?” I purposefully titled this entry a living eulogy because I decided to write it while I’m able.

I chose this idea for two reasons. The first is that I always want to excite, stimulate, and motivate my readers to be captured by the narrative and then self reflect on whatever meaning they wish to derive from it. The second is that I needed a chapter to provide a good closure, not for this blog, which I intend to keep writing for as long as I am able, but instead for a paperback book version of the blog (more about that later). What better closure than a eulogy to myself?

In writing this, I found it gave me the chance to say thank you to those closest to me now. It provided me a chance to ask forgiveness, to look at myself out of body, and to share my affections with the world at large. To me, it gives me a platform to share my feelings with a gathering I won’t be present for in the future, but one I can be present for now. And in writing it, it brought up great emotions, some quite sad, but for the most part, those of joy, contentment and peace.

Okay, let’s go.

Greetings, all. I’m going to start by saying that the rumors of my death are still greatly exaggerated because this is my living eulogy and I’m here to deliver it personally. At the time when it becomes a legitimate eulogy, read by someone else, then I’ll keep it to a reasonable length, knowing I’m the one between now and getting to cocktails and food being saved for the funeral (you’ll have to go back to the jokes segment to understand this).

“I hope you’ll be reading this today not to grieve, but to celebrate life. I assume if this were the real thing, you’re here because at some point in our lives we connected and developed a relationship. For that chance intersection, I am so grateful. My life would not have been as rich and joyful without you. Before I go down a gushy rabbit hole, I’d like to get through a few thank you’s.

“First I want to try my best to express my deepest gratitude to Mary Ann who transformed me from an idealistic hippie who could not manage his finances to save his life into a pragmatic, caring person who helped build the Wittenberg dynasty. She was not just my partner for almost 40 years but also my best friend and compass. We did a lot together, not in just building an amazing family, but also building an amazing community of close family and friends around us. And above all, we had some really great times together traveling, partying, and relaxing. I know I’m painting a rosy picture here, but we did have a rosy life together. Of course this part wouldn’t be complete without the other side of the coin. I freely admit I was a big pain in the ass to live with. I was indecisive, non-committal, didn’t take all the responsibility I should have, stayed quiet way too long when we argued and definitely should have cooked more (which was a double edged sword since I made a hell of a mess whenever I did). For all of that I ask forgiveness. I’ll finish by saying that you were the best thing to ever happen to me and, given the chance, I would do it all over again without any changes, except maybe for the cooking part. Know that when the time comes, I’ll be staking out a nice neighborhood for us up there and promise I’ll wait before I decorate.

“Next is to my kids. Besides mom (duh!), you were also the best thing that happened to me. Being a father was something I knew I wanted to be. I hope I was a good dad to all of you. We had some real happy times together and some when we banged heads. Mom and I wondered if we’d get through your adolescence with a sound mind. Thankfully we adopted the measure of when you lower your expectations, your success rate goes right up. And since no one ended up in jail, pregnant, or addicted, we figured we were doing alright as parents. We also said that we brought up our kids to be strong and independent and dammit you went ahead and did it. That’s why we call you our non-conforming kids. We are proud of what you’ve achieved and when it’s time for me to leave, I’ll be confident knowing you’ll all have happy and productive lives. I will say I was hoping to hold out for grandkids, thinking I’d make quite a granddad, but hey, I can’t have everything. I’ll leave the grandparenting to mom. She’ll do a great job spoiling them and handing them back to you. I will say the bigger achievement you made was dealing with my really bad dad jokes. And when it’s time, take good care of mom. Don’t let her sit in the dark.

“Now to my family, not just my immediate family, but my inherited family. To my sister, I can’t say enough about the attention you’ve given me, from the time you schlepped me around with your friends when I was young and especially before, and certainly after, I got sick. You’ve spent time and money coming to visit and we had the best and most time we’ve ever had together. I remember when mom passed away and we both felt like orphans having lost both of our parents. That was when we started getting close again and it never stopped. I love you.

“To my adopted Italian family. I am so glad you welcomed me and treated me truly like one of your own. It also helped that we enjoyed drinking large amounts of alcohol whenever we got together. What could go wrong, right? Well, there was that Thanksgiving when we almost burned my house down, but hey, we had a good laugh like we always did.

“To my closest friends, you are my alternative family, the one I was able to choose. Over the course of 50 years, we joined each other in our simchas and tsurises (meaning good times and bad). You shaped my life by sharing so many experiences with me, from meeting at Camp Lymelight, through starting a food coop to moving to California and meeting through our kids in school. I was blessed with having you around me for all of these years. Friends are one of the most important things to me, outside of my own family, of course. We got high together, played music together, traveled together, introduced our boyfriends and girlfriends to each other, attended many Men’s Weekends and a few People’s Weekends together. But above all else, you supported us throughout our journey. You were there every step of the way, helping me and Mary Ann through this. And when it’s time, I hope you’ll continue to embrace Mary Ann so she can still be an integral part of our community.

“And to our temple. Mary Ann and I were introduced to it by friends who we met through our daughters shortly after we moved through the tunnel from Oakland. For over 20 years we’ve gotten to know so many wonderful people, some whom we’ve grown very close to. We wanted to give back and did so through involvement, from the ritual committee, being members of the Board, even becoming President and Mary Ann as First Lady of the temple. And let’s not forget my favorite contribution, The Tikvah Tones, our house band. You have all also been our spiritual foundation for the continuation of my Jewish identity as well as Mary Ann’s spiritual home.

“And last, but not least, to all of the musicians I’ve played with over the years. Music was a big part of my life and the hours of time playing gave me a pleasure hard to describe to those who don’t play. There is a magic that happens between musicians that brings them to an otherworldly place and I am grateful for the opportunity of going there with you.

“So let’s get down to it – the meaning of life. Douglas Adams of The Hitchhiker’s Guide says it’s the number 42, other great philosophers say the meaning of life is to deny it, to believe passionately in God, or to exert will to power, in other words, life is about purpose.

“I’ve always felt I needed something to pursue that would make me feel smarter, happier, or productive. Having lost my father very early in life, and my mother being old country meaning high expectations and little emotion, I had to grow up and become independent quicker than my peers. I had to be okay with missing out on the amenities of a true middle class American household. I soon found reward in work, both in school (which I was determined to complete), and in the part time work I had to do in order to survive on my own while putting myself through school. It made me unafraid of taking risks, a little easier getting over my early shyness, and gave me an early view into FOMO (fear of missing out). I drove myself to try new things, to be comfortable being alone, (which I never could get used to), and so my obsession to not just make friends, but to keep them for a long time.

“My three regrets, and really only three that come to mind, is not attending more baseball games, not serving in the Peace Corp and not achieving a level of musicianship that I really wanted to. Outside of that, a marriage of almost 40 years, three great kids, a circle of amazing friends, a closeness with family, an incredible community, achievement of career, traveling through at least 35 states, 25 countries, and eaten some of the best food on the planet, how much more can I really ask? I’ve read a lot of good books, listened to a lot of great music, seen some great art, experienced provocative theater, and seen both really good and really bad movies. I’ve ridden my bike thousands of miles, cross country skied a couple of hundred miles at least, hiked hundreds of miles through spectacular landscapes, and loved spending rainy Sunday afternoons in my garage with the garage door open playing music on my stereo having a cigar, listening to the rain and working on building one of my instruments. Or sitting in an Adirondack chair, next to the creek on Small Beach at Berkeley Family Camp with my family nearby. Or sitting at an outdoor table in a courtyard surrounded by white washed houses in the Southern Italian town named Cisternino, waiting for the waiter to bring grilled meats along with a bowl of roasted potatoes, salad, great bread and a bottle of wine on the table eating with Mary Ann and her Italian family. Or having the best hummus and garnishes looking over the bay in Jaffa with my Israeli family.

“I know I’ve been accused of always being the teacher and having to leave some sort of lesson. I’ll try to not be cliché-ish, though it’s hard because it’s been said so many times before. When you wake up every day, be grateful for everything you have, don’t overload your day, make it really count. Spend time with loved ones as much as possible. Do things that really make you feel good and accomplished. Be political because it really matters. Don’t be hard on yourself, you’re doing the best you can. And do the things YOU want to do. Why? Because you’re an adult and you can.

“Okay, that’s it. Keep me in your hearts because I keep you in mine. Party on Garth. Party on Wayne!”

So, what do you think? Remember, this is the first draft of my living eulogy. So far, we have stayed safe through the pandemic. We’ve managed to see our kids a lot, hung out with friends over cocktails, been on Zoom calls with friends and family. We’ve managed to just keep going, feeling optimistic, but not impractical. We try to extract some joy and pleasure out of each day, despite the unrelenting virus and the ravaging of our country by a megalomaniac and his enablers.

Given this day and age, I also see amazing love and resilience from my family, friends, community, and a majority of the population. I’m witnessing a new wakefulness that is battling against opposing forces. I truly believe that in my shortened timeline, I will witness a huge change in our immediate future where good will prevail, civil responsibility will triumph, inclusion will rise, and our country and personal lives will be such that I can feel at peace moving on (when the time comes, of course). As I have expressed throughout my writing, it’s not me alone who should feel a sense of urgency to live to our fullest purpose and joy. We should all guard against complacency and the mundane because we can’t tell when adversity might visit.

When I end each segment with “More to come…”, I mean it. I’ll keep posting on my blog as long as God and my body will allow me. And at the time I have to say, “D, D, D… That’s all folks”, you’ll be the next to know after my family and friends. Thanks for hangin’ with me through my journey.

And since I’m still here, I hope you’ll support me in my advocacy by donating to our team page for the East Bay ALS Walk at http://web.alsa.org/goto/harry.

More to come…

The brilliance in resilience…

The Oakland Firestorm, October 1991

Certainty is an illusion. Yet, as humans, we crave it. When we don’t have a feeling of certainty, our brains detect a threat to our survival and we react – fight or flight. I, for one, can testify that uncertainty happens. One day in October 1991, the Oakland Fire happened. On that morning, a fire breaks out some distance from our house. That afternoon, we’re told to evacuate, and by the next morning, our house is gone. In a day’s time, our lives are upended. Given the short time we had to evacuate, all we could grab were our two very young kids, our cat, a couple of days worth of clothes, and our address book. We left one of our cars behind because a friend left her’s with us and I wasn’t going to leave it behind. We just didn’t believe the fire was going to get as far as our house and that we’d be back in a couple of days.

As we tried to leave the neighborhood, the single lane roads were packed with cars. The police closed the entrance to the freeway, so there was only one way out. We started getting nervous since the smoke was getting thicker, sirens were more frequent, and we were barely moving. Finally, we started to move slowly and after a time, we made it to a friend’s house. We settled in and watched the news all night to track the trajectory of the fire. Given the wind patterns that evening, we were never sure whether our house made it through the night. My neighbor, from our Oakland neighborhood, called me to figure out how we could go together to see if our respective homes survived the firestorm. The fire at the time was the worst urban conflagration the US has seen. It took us two days to get back in.

All roads to the areas affected were closed by police checkpoints. My friend and I decided we would go to the police checkpoint at a very early morning hour. When we got to one of those checkpoints, we pleaded with the officers to let us through. At first they refused, citing safety due to downed power lines in the area. We appealed again and they relented. They agreed that one of the two officers would stay at the barricade and the other would drive us in the police cruiser just to see our homes and then immediately turn back to the checkpoint. We got into the police cruiser and the drive was a bit surreal since the entire way we saw the whole neighborhood intact; houses, trees, cars and all. Our hopes surged until we turned the last corner towards our homes. The houses were intact as well. Suddenly, we got to the corner where my and my neighbor’s homes were and it was as if we had just landed on the moon.

Though this isn’t my house, it’s close enough to what I saw of my own, two days after the fire.

From that point on, there was a gray, monochrome landscape of destruction. My house was gone except for the front facade which was still smoldering. The wall eventually collapsed and all that was left was the brick chimney. My neighbor’s house was the same. He owned a beautiful Alfa Romeo sports car which had disintegrated and all was left was a pool of cooled aluminum. We embraced each other and started to cry. We were in shock, in part on the visual before us, but also because our brains were processing the loss before us and the calculations of our impending futures. We rode back in the police cruiser to the checkpoint in silence, then got in our own cars and drove to the places we were staying. I walked in and Mary Ann and her friend were waiting in anticipation. I delivered the news and more tears flowed.

What happened next was a non-stop whirlwind of contractors, insurance agents, government processes, neighborhood meetings and of course, shopping, shopping, shopping. We had absolutely nothing in our possession. We needed to buy everything from underwear to clothes for work, toiletries, and other essentials. Luckily, Mary Ann’s friend’s neighbor was traveling for a month and offered her home to us. During that month, we both went back to work, got the kids to school, looked for a more permanent residence, did lots of shopping, met often with a contractor who represented us with the insurance company, all the time trying to create an environment of calm and steadiness for the kids.

Over the next two years, we lived in a small house in Alameda, secured funding from the insurance company and started down the path to recovery. We decided to clear our lot and rebuild a new house. A friend of ours was an architect who was eager to help and we all decided to move forward with designing a dream house, complete with the elements of Feng Shui to bring the most Chi (positive energy) throughout the house. What resulted was not only a beautiful home but a strong sense of resilience. What seemed impossible at one time became real.

After that experience, we thought we went through our one big disaster in our lives and that we could handle any adversity thrown at us from then on. Since then, our third child, Ethan, was born, both Mary Ann’s and my parents passed away, we moved out of our new home to Orinda to put our kids into better schools, and I was compelled to leave a horrid work situation right in the midst of the 2008 recession. Remind me of that expression, “God gives you what she thinks you can handle”? In our case, really? She didn’t need to be so kind.

Yet, through all of that, we learned that resilience resulted in circumstances better than what we imagined. Our experience with the Oakland fire was literally a Phoenix out of the ashes. Everything with us as a family seemed to have strengthened, as individuals, as partners in marriage, as parents. We also valued what life had to offer. And shedding all our material possessions was liberating (though if you looked at our garage now, you think we would have learned better). When it came time to build our house back on our old lot, we built the house the way we wanted, didn’t cheap out on materials, appliances, furniture. We bought art, I bought myself a new electric bass guitar I wouldn’t have considered before. Some door opened that made us less inhibited, more spontaneous. The acts of resilience made a positive impact on our lives that goes on until today.

Fast forward to 2018. On one of our daily morning walks, I feel I’m losing control of my right foot. As you already know, over the last almost two years, I’ve progressed in becoming a quadriplegic with no forewarning. Once again, uncertainty has returned to our lives. It has dwarfed the challenges of the Oakland fire in that we know what the future looks like. Of course we wondered what the hell did we do to deserve this, having already gone through what we have in our lives. Mary Ann and I yet again went through the shock of the hand we’ve been dealt, though this time we couldn’t hop in the car and drive to safety. This time, instead of contractors and architects, it’s been doctors and caregivers. One constant is the insurance companies. A new resilience has kept us moving through our lives by minimizing the hardships as best as we can, making sure our kids and family are “woke” to the realities to our situation, keep close to our family, friends, and community, and make every day count. Resilience is the same foundation we rely on today as we did in 1991. It allows us to keep laughing, keep loving, keep enjoying life and gives us hope.

Does this newspaper ad look at all familiar?

But as if that weren’t enough, a new layer of challenge has been heaved upon all of us. I know, dear readers, that you’ve had your own battles you had to fight before the 11th plague hit. All of a sudden, a global pandemic emerges within two months, and we’re being told to stop everything we’re doing, and shelter in place. When talking to friends, we all discussed the uncertainty of days. We couldn’t see more than a few days ahead of us, let alone planning anything months in advance.

We’re in the midst of uncertainty, with uncertainty being the only thing we can count on. We are all experiencing fatigue from our anxieties. No wonder our cocktails are so necessary and our Zoom calls with family and friends so important. Those are things we do to cope, which helps our resilience. If we’re going to get through this with our sanity and hope intact, we need to practice resilience every day. Resilience is an inner strength that must be exercised every day. Speaking from experience, there are surely things that will come out positively for all of us from this. One thing important to resilience is to adopt a vision of the future. Right now, one of the main sources of frustration is the news about our government. The future seems bleak. Yet, there is one thing I found to be helpful in times of adversity is the ability to visualize the future you want to see for yourself. It helps you set new goals and gives hope in achieving them.

Our resilience will be in part be a herd consciousness. There is power in positive thinking. We must believe, and act to make our collective visions come true. If anything, we must act for our health and the health of our planet and the health of society at the very least.

Resilience is the trust we put in ourselves to make our own futures happen. When Mary Ann and I went through the loss of our home, we spent some time grieving. Our lives changed overnight. Yet, we couldn’t be complacent and so we started rebuilding our lives. We kept our eyes on the prize. Our resilience grew as we were able to accomplish each need we had. And then, at some point, we realized that we had overcome our adversity with a better outcome.

Now is the time to put trust in ourselves to make a better future. There is much we can’t control that is outside our environments. But there is so much more we can do to build resilience. Limit the input of the news we hear that makes us anxious. Channel nervous energy by connecting with others. Volunteer or contribute to the election campaign. Focus on family (it’s my excuse for having my cocktail hours with them), escape into a novel, get some fresh air. But foremost, don’t lay any guilt on yourself that you’re not doing enough. We must care for our emotional health. Distraction is okay, as long as you channel it into something healthy. If it goes in the wrong direction, then reach out to someone for help. Be vulnerable and accept the help, whether from a family member, a friend, or a professional.

The brilliance in resilience is that there is a good chance that something good, if not great will come out of this. I truly believe the opportunity for real change is possible. As Gandhi once said, “Be the change you want to see”. Work on your strengths so when the good times do arrive, you’ll be ready to take full advantage of it.

More to come…

Life is precious (In homage)…

The killing of George Floyd rightfully brought out the anger of our country.

How much of life have you taken for granted so far? I know I had up until I was 62. I was very healthy, active, building stuff, traveling, and spending time with family and friends. Don’t get me wrong, I loved life and appreciated what I had. Yet, at the same time, I was taking it for granted. Proof positive was the planning I was engaged in for my retirement years. I had quite the list: leisure time with Mary Ann at home, visiting with the kids, more time on my bike, playing in multiple bands, building instruments and, of course, traveling. And then, an act of God, Mother Nature, and the energy of the universe decided to change all that. Of course, I wondered who made the call to bring me to my new prison and incarcerated my soul into a non-functional body. It happened quickly and with determination. With this, I am now gasping for breath, which is common place for me these days. Yet, I’m not the only one who was struck down by natural causes. I grieve for all the others who suffer from Mother Nature’s intervention in our lives, especially those younger than me whose times on Earth has been prematurely cut short. Those deaths are caused by either the Divine intervention or caught in the vortex of the energies of the universe. We call them natural deaths.

Then there are man-made deaths, ones that are preventable. Too many have had their lives cut off because of man-made concepts such as hate, fear, xenophobia and racism. I now grieve the man-made deaths of George Floyd, Breonna Taylor and Ahmaud Arbery. When George Floyd cried, “I can’t breathe”, I got it. I myself know what it’s like not to be able to breathe so watching the video of George Floyd losing his life with a man pressing his knee into his throat was so painful for me. It would take me being off of my respirator less than ten minutes for me “to walk across the line” and die a natural death. In the case of George Floyd, it took 8 minutes and 46 seconds of oxygen deprivation that took his life, clearly not a natural death. It was man-made and could have been prevented. It was a policeman who took his life, a man who had a sense of white privilege and brotherhood protection which provided a sense of security in taking the life of a black man.

And Ahmaud? He was jogging, unarmed, following a dream. The two white men who stopped him used a citizen’s arrest and open carry laws to justify killing him because they had man-made rules that gave them the confidence of privilege to do just that. This was not the work of Mother Nature, but of man.

And Breonna? She was home, feeling as safe as an African American man or woman can these days, being with family. Her boyfriend possessed a firearm and was only going to use it to defend his home, who most pro-gun advocates argue is the reason why anyone should own a gun Without a warrant, and bad directions, the Louisville police rammed the door, and rushed in, weapons drawn. It took seconds for Breonna’s boyfriend to react and readied himself to protect his girlfriend, and the police shot Breonna. She was a medical technician helping with the pandemic. Another man-made tragedy that could have been avoided.

So what do we do now? For too long, we’ve seemed to have become numb to these man-made tragedies. That’s why I support the peaceful demonstrations going on. Unfortunately there are opportunists who use the cover of large assemblies to loot, but that seems to be the case every time there are large demonstrations. We need to keep our eyes on the prize. I believe it is our obligation to let our government know that we know what is going wrong, and it’s time we tell them enough is enough in terms of their inaction. For too long, officers like Chauvan, with 17 complaints, 4 shootings, one fatal, are allowed to continue working, emboldened by the notion that they will be protected, no matter what. I believe we should make policing a white collar job, appealing to professionals who have a range of skills including negotiation, problem solving, and a sense of inclusion.

Please forgive my rant. You all know by now my Judeo values of repairing the world and when we do harm to one, we do harm to all. Another Jewish credo is when you don’t speak up when you see wrong, you are complicit. We need to grieve and then move to action. When there are man-made tragedies, it diverts our attention from Mother Nature’s challenges. We need to show compassion to the victims of all tragedies and keep our eyes on solving both. The man-made ones we can take care of by writing or calling our government representatives and using the ballot box. Trump is a good example of a man-made challenge that can be fixed by voting him out. The idea here is that however you choose to take action, please do something peacefully, respectfully, and for the cause of our common good. Let’s take care of our man-made challenges so we can focus on Mother Nature again.

More to come…

A reluctant member…

A wise sage once said, “I’d never join a club who would want me as a member. ” (That sage was Groucho Marx.) In 2018, that is exactly what happened to me, I joined the ALS club, truly one I never thought I’d ever join. Yet, here I am. And while I’m here, I might as well introduce you to the club and to a part of my personal history which, ironically, prepared me, somewhat, to become handicapped by virtue of my disease. I’ll start with my personal history.

Not long ago, I received an email newsletter from an acquaintance with physical disabilities. In it he highlighted a documentary called Crip Camp which is available now on Netflix. (Crip is short for cripple, the age old word for being permanently physically handicapped.) It’s a wonderfully produced documentary about a summer camp in the Catskills for physically handicapped teens, staffed by young hippies from New York City that takes place in the early ’70s. It was very nostalgic for me to see because of all the parallels I drew from my own experiences. I worked in camps for the both the mentally and physically handicapped, in the Catskill Mountains in the early ’70s. I worked with an extraordinary group of hippies who were dedicated to the campers. (I am, to this day, friends with many of the folks I worked with in those camps.)

As a counselor at Camp Lymelight, Upstate New York, circa 1973

There is a segment of the film that focuses on a NY State institution for the disabled called Willowbrook. I volunteered there while I was in high school. It’s hard to describe the almost inhumane conditions that existed for the residents. Most were concentrated in wards, stripped naked, perseverating in chairs or in corners. It truly was like walking into a horror movie. What was very upsetting was the idea that many of them were likely abandoned by not just their families, but also by the State that was responsible for their care. I remember going into a ward and the attendants for the ward would sit in a room with a large glass window and have little interaction with the residents. Also burned into my memory was feeding the residents. The only thing that distinguished one portion of food from another was its color. That experience committed me to a life of service and a career. It determined my pursuit of working at summer camps for the handicapped, my first career as a Special Education teacher then later on teaching adults. Willowbrook existed for many years until finally, it was exposed in the media (by a young and idealistic Geraldo Rivera) and it was dismantled.

People, Places, and History - Willowbrook State School - Wattpad
This is what I saw as a volunteer at Willowbrook.

Though I worked with children and young adults with disabilities for many years, nothing really prepared me to join the ALS community especially in such a short period of time. As my illness progressed, I started to experience some of the situations that people with physical disabilities deal with each day. The enigma being I had joined the ALS club but also that of the community of the physically disabled. The weird thing is that I can’t claim to be a member of the physical disabilities club because I have been disabled for a relatively short time whereas members of that community are lifelong, like those from Crip Camp. I am thankful that I can reap the benefits of their amazing work through antidiscrimination laws and accommodations.

Now, let me share some information about ALS. The discovery of the disease was made in 1869 by a French neurologist Dr. Jean Martin Charcot. Yet it wasn’t until 1929 did the world hear about it. It was “The Iron Man”, the indestructible Lou Gehrig, the one who played more consecutive games than any other ballplayer (until 1995 when Cal Ripken beat his record), that brought awareness of ALS to the world through his famous “I’m the luckiest man in the world” speech. Bringing awareness had another opportunity in 2014 when the “Ice Bucket Challenge” was held, creating visibility to the disease, along with it $115 million dollars in donations. Yet it’s still considered a rare disease, there is no cure, it’s debilitating and it’s terminal.

So how rare is it? There are approximately 15,000 people with ALS in the US with a rate of about 5,000 new cases every year. Most common age range is between 40 to 70 with an average age of 55. I know more than enough cases that affect people in their 20’s and 30’s. 90% of cases are “sporadic”, meaning no prior family history, totally out of the blue. More men than women get it and if you were in the military, you have a 50% greater chance of getting it than others. There also seems to be a prevalence with football players. It happens all over the world and doesn’t discriminate based on race, color, ethnicity, etc. Many people affected are usually healthy and active. There was a time in my life when friends called me “The Bull” because of my strength and endurance. It certainly didn’t discriminate against me. After I turned 61 years old, my family doctor sent me on a spate of health tests. All came back negative. I share my profile because I am the rule, not the exception.

“The Bull” and friends at the San Francisco New York Street Games Faire circa 1982

So why is this neuromuscular disease so hard to beat after 150 years? One reason is the disease hasn’t had much attention, until recently, by the pharmaceutical industry. It’s been said that it would cost about $2-3 billion in investments to find a cure for a meager 15,000 patient population. Not much of an incentive for a drug company looking for their next blockbuster. It is also quoted that ALS is not incurable, just underfunded. That’s not to say there isn’t anyone working on it. Actually, there are very reputable companies and non-profits working on it, for which I am very grateful to, likely not for me, but for those after me. Secondly, it’s alluded scientists in its origin. What makes cells die that turns off the communication between the brain and muscles? And when that happens, your muscles stop working and lay limp, making me, at least, feel like a boneless chicken. There are only four FDA approved drugs, each, at best, to slow the progress of the disease with uneven results, and still no cure. And those drugs have only been available over the last few years and are extremely expensive, unaffordable without medical insurance. Needless to say, ALS is very costly to maintain between doctor visits, cost of drugs, caregivers, and medical equipment. It can easily go over $100,000 per year, likely more. If there is any question why we need national health care and why including those with pre-existing conditions is so crucial to keep in the ACA. Many people ignore the possibility of millions being thrown out of health insurance, and are even against it until, of course, it happens to them. Let’s not wait and please advocate for it and vote for members of the House, Senate, and, of course, President to make it happen. Life is fickle and every day counts.

As I talk about ALS, Covid-19 is the focus of medical research right now to find a cure as soon as possible. And that is as it should be. It’s amazing what we can do when we have enough funding and brain power devoted to something important and immediate. That is a fantasy I have about ALS. If there were ever a time when the ALS research community had all the funding necessary, would we be able to discover how the disease starts and grows, how to stop it in its tracks no matter what stage you’re in, or, since we’re letting our minds free styling on this, actually reverse it so we can all get back to the lives we once had to bring up our kids, have a full retirement, or write the great American novel? We can all dream, can’t we? How else do you have goals to aim for? So to us get there, please donate to the ALS Association.

I now want to take a moment to honor those who came before me who succumbed to ALS specifically – may God rest their souls. I especially want to call out some celebrities who entertained us in music, theatrics, sports, science and politics. My thoughts are with Lou Gehrig (NY Yankees), Catfish Hunter (Oakland Athletics and NY Yankees), Dwight Clark (SF 49’ers), Steve Gleason (New Orleans Saints), Stephen Hillenburg (Creator of Spongebob Square Pants), Jon Stone (Co-creator of Sesame Street), Sam Shepard (actor and playwright), Charles Mingus (Jazz bassist and composer), Jacob Javits (former NY Rep and Senator), Stephen Hawkins (Physicist), and David Niven (Actor). And last, but not least, Mao Tse Tung. (Nixon even sent him a respirator as a gift.)

More to come…

The miracle of technology…

This image has an empty alt attribute; its file name is control-center-.jpg
My cockpit, controlling written communications, phone, web, and chair functions. Oh, and a cup holder!
And they said it couldn’t be done.

In these days of COVID-19, many of us we’ve realized how technology has kept us connected to each other and to the services we need to survive. I, for one, have two virtual cocktail hours each week with different groups of friends as well as ad hoc Zoom meetings with different friends. Funny how we’ve agreed that we see each other more now than before. Technology gives us a sense of control over our lives. We take for granted the independence we have of calling who we want when we want, shopping wherever we are, or being entertained or getting news at our fingertips. We consider our smartphones and laptops essential to our living our daily lives. But when something happens to those technologies, something visceral happens. We sweat with anxiety, the fear of missing out (FOMO) is felt with a swiftly beating heart, and not being able to get in touch with our family forces our reptilian brain into fight or flight reaction thus clouding our judgment and shutting off our executive functions. That reaction is the same whenever we lose our autonomy. No wonder we feel so anxious sheltering in place and being cut off from our sense of autonomy.

So it’s no surprise that there is little we do to prepare ourselves for losing any of our independence. All of the challenges associated with that could take down even the strongest of wills. It was frightening to me when I started to lose control of my limbs. As my sense of control was being chipped away as the disease kept killing the cells that were the communications link between my brain and my muscles, I started hustling to compensate so I can keep as much of my sense of autonomy as possible. It didn’t take me long to decided to take on the challenge of finding ways to keep me productive. Being a techno geek and early adopter of new technologies over the years, my natural instinct was to seek out technology to help me stay connected and engaged. Hell, I still have my first mobile phone that came in a small satchel, a MacBook 100, and got a Masters degree in educational technology when very few heard of the term and we were shoving 4.5″ floppy disks into Apple One computers.

The first to go were my legs. Like many others who’ve lost the use of their legs, I held out for a Permobil power wheelchair. The cost of the chair is about as much as a car. (Before ALS, I had my heart set on getting a Tesla. I decided that I did get my electric vehicle after all.) I was told that the insurance would pay for only one wheelchair and am glad I held out. It moves through most terrain, the seat is multifunctional and for quite a while, I was controlling it myself using a joystick. I’ll talk more about my chair a little later on.

My next shift in technology happened when it was getting harder me to type on my laptop given I was losing control of my fingers. I needed to find another way to write. I did some research and found that my Android phone was capable of pairing with a compatible trackball mouse. I had enough dexterity in my thumb that I could compose emails and texts on my phone. I then decided to start my blog. I found a service (WordPress) with both Web and mobile interfaces and started composing my posts on my phone using the blog’s mobile interface. At first, I was writing pretty quickly, then my thumb started stiffening, but I forged ahead regardless.

When I finally went on full disability and left work, I had to return my laptop and phone since they were company property. I had to purchase a new phone and laptop. My first instinct was to get another Android phone. I was against getting an iPhone because my last job with Apple was so traumatizing that for many years I stayed away from Apple products. The only thing that changed my mind was when a friend told me that the new iOS on the iPhone had voice control. I researched it and found it could be very helpful given I was losing control of my arms, hands and fingers. So I had to let go of my anger with Apple as an employer and bought an iPhone. Despite my misgivings, the iPhone is extremely helpful. Using my voice, I’m able to make and answer phone calls, write texts, answer emails, and use any app I want. I was able to continue working on my blog as well. But true to form, there are issues too. I’m not able to hang up on calls because the voice control function is shut off during a call so I can’t tell it to hang up. I rely on the caller to hang up or, if it goes to voicemail, I have to wait until the system hangs up. Other restrictions are when I call a company and am required to use the keypad to choose a number, I need to ask someone to touch the keypad for me. Despite those problems, my phone is incredibly helpful.

Use Voice Control on your iPhone, iPad, or iPod touch - Apple Support
The iPhone uses numbers to associate with apps so when you say the number, the app launches. It also uses command words to make things happen.

Next, I had to replace my laptop since I had to return it to my employer. Coincidentally, at the same time I was considering which laptop to get, we visited the speech therapist at the ALS clinic. She recognized the extent of my progression and introduced me to eye gaze technology, called the Tobii Dynavox PCEye mini. In order to use it, I needed to buy a Microsoft Surface Pro tablet computer. I was reluctant to buy the eye gaze technology, thinking I didn’t need it at that time. Mary Ann was insistent that I needed it then. I held back until it became clear to me that it would be useful. (So full credit goes to Mary Ann for her persistence in buying it.) With the Surface Pro and the combined Tobii eye gaze technology, I can do almost everything I need to on a computer. The eye gaze technology provides me two things, a virtual mouse and a keyboard. The virtual mouse allows me to right click, left click, drag and drop, and scroll. The keyboard provides a QWERTY format, key functions, etc. Between both of those, I can surf the web, scroll through pages, conduct searches, buy stuff, and anything else I want to do. I mentioned before the last few of my blog posts, including this one, were done solely with eye gaze technology including adding images and formatting text.

Tobii Dynavox EyeMobile Mini
This is what my system looks like. The component below the computer screen is the eye tracker. On the right side of the computer screen are icons that represent mouse functions. I look at the icon to invoke the function.

Returning back to my wheelchair, the technology I just described will have a significant impact on my ability to control it. When I lost the ability to work the joystick which allowed me to drive and adjust my chair independently, I felt helpless and nervous because I was now completely dependent on others. In desperation, I started to research what adaptive technology might be out there that would use eye gaze to allow me to manipulate the chair independently once again. I landed on a site that represented a charitable organization founded by Steve Gleason, a former football player from the New Orleans Saints who now has ALS. (As it turns out there is a higher than normal percentage of football players who are diagnosed with ALS.) Gleason’s foundation supports ALS patients by funding the purchase of adaptive technology to help them become more independent. It turns out Gleason challenged a team of software engineers to develop something for power chairs. That’s how I found out about the Independence Drive. It’s a drive system for my chair that is integrated with my eye gaze technology. (For the geeks, it uses an Arduino switcher that receives commands through the chair’s computer module from the eye gaze software to tell the chair what to do.) Below is an image of what the screen looks like that allows my eyes to tell the chair which direction to drive or to move my chair seat. I look at one of the directional icons and the chair drives in that direction. It also uses the same icons when adjusting the positions of my chair. The real benefits are that I no longer need to ask Mary Ann to adjust my chair for me and I can drive myself to and from the bedroom and outside and back from my backyard. The only issue is, when in direct sunlight, the eye gaze component can’t track my eyes, so it stops working and I am back to being dependent again. I understand that I may be one of the first in the Bay Area who has this capability. I truly am grateful for this technology since it provides a new level of independence.

Is It Just Software?
The Independence Drive interface. I look at one of the directional arrows and the chair drives in that direction. I do the same thing to invoke chair functions like reclining, feet up and elevate the seat.

I’ve always been interested in technology and usually am not fearful of being an early adopter. Given my situation, I researched how to control appliances either by voice or on my computer using eye gaze technology. I found through the use of “smart home” technologies, like WiFi capable light switches and plugs that work with Amazon’s Alexa was. Many of these switches use a protocol called WEMO, though other manufacturers may have their own. I installed smart light switches in three rooms, and now I ask Alexa to turn on or off the lights in those rooms and voila, it happens. Then I plugged in the WiFi wall plugs and plugged my TVs into them. Now I just ask Alexa to turn a TV on or off, she does it and politely says “okay.” Now, mind you, I have my arguments with her, especially when I ask for something and she gives me something different. When that happens, I call her all sorts of names, only to come back and tells me she doesn’t understand or can’t do what I ask. She does have a sense of humor, though. If you have the right skill enabled, you can ask her to pull your finger and she will shamelessly oblige.

The next problem to solve was replacing a physical remote with a virtual one, either for the TV or Bluetooth devices. When it came to the TV remote, I had seen an ad by my cable provider, Comcast, that they were just released a web-based virtual remote for the disabled. You can see an image of it below. So now I ask Alexa to turn on the TV, then use my virtual remote to change channels, access Netflix or Prime, search for movies, and play and pause movies. The limitations are that it won’t adjust the volume or turn the TV on or off, which I’ve already solved.

An accessible TV Remote screen is displayed
This is a virtual remote control which uses eye gaze to control my TV.

And speaking of Alexa, I have her playing radio stations for me, one function being an automatic wake up playing the radio at the same time every morning. She also reads my Audible books (I also read my Kindle books on my tablet using the Kindle app to open the book and turn the pages with eye gaze), plays podcasts, plays music through my Sirius XM and Spotify accounts, and even finds our phones when we lose them in the house.

I don’t want to leave out the handiness of Bluetooth. Through my computer, and my phone, control Bluetooth devices. One example is my outdoor sound system. I have an inexpensive Bluetooth amplifier attached to a pair of speakers. I connect to the amp either through my computer or my phone and then play my music using my music services. Along with that, I also put up a movie projector screen and now have movie nights in my backyard.

Simple , inexpensive Bluetooth stereo amplifier

My heightened respect for people with disabilities who take initiative to make themselves independent and live full lives is what inspires me to look for ways to be independent, productive and find joy in each day. That is one reason watching Crip Camp was so inspiring. Mind you, I am not a lifelong person with disabilities and don’t want to come off as a true member of that tribe. I’ve had huge advantages over my lifetime others never had. My heart goes out to those who came out of Crip Camp because I never had to deal with isolation, ridicule, lack of friendships, obstacles, and educational opportunities. A true inspiration is my friend from the movie who fought for and pioneered the civil rights for the disabled to be treated like any other citizen, deserving accommodations to make them truly productive, which the majority are today.

To my readers, you can extrapolate my message to apply to any community whose rights have not been fully rendered. Supporting them and their cause can truly blossom into more independence, integrity and respect. I’m fortunate to not have experienced any overt discrimination, (except for those who park in the van accessible handicapped spaces, more like a first world problem), I feel I sit on the shoulders of giants who came out of a supportive, respectful environment to go and change the world. I’m asking you to let go of fear and xenophobic attitudes and get to know someone who is disabled, and their caregiver, if possible, to better understand their lives. Another way is to donate to an organization that supports the disabled like (shameless marketing plug here) the ALS Association.

More to come…

A little laughter… Please!

Based on the comments and feedback from readers of my last post, I believe I touched on some deep feelings. That was deliberate. In my posts, I try to raise issues I believe is important to all and requires some action. The purpose of this post is to take a breather from the stresses of sheltering in place and just laugh. Many of you likely read my post on humor. This is different – no reflections, no lessons, no deep thoughts, just pure, unadulterated fun. And by unadulterated, I want to emphasize “adult”. The jokes below are for adults so be forewarned. Raw humor is sometimes the best humor.

Before I get started, I want to thank my friends who first shared some of the jokes I include in this post. I also want to pay homage to the people who created them. Some jokes I can’t remember where or when I first heard them, but they stayed with me for years. Either way, jokes are a distraction and tell stories of the human condition.

All of the humor below is Jewish humor. Jewish humor reflects real life. It’s self depreciating, self effacing, and very naughty. It’s a way of bringing life back after tragedies. It makes fun of ourselves rather than others. And they cover a cross section of life from death, marriage, old age, and on. And if you enjoy them, I strongly recommend you reading Michael Krasny’s book titled Let There Be Laughter. So put on your seat belts and laugh out loud. (NOTE: Some of the jokes below are repeats of jokes written in older posts in this blog.)

Two kids are in a hospital each lying on a stretcher next to each other outside the operating room. The first kid leans over and asks, “What are you in here for?” The second kid says, “I’m getting my tonsils out. I’m a little nervous.” The first kid says, “You’ve got nothing to worry about. I had that done when I was four. They put you to sleep and when you wake up, they give you lots of jello and ice cream. It’s a breeze.” The second kid then asked, “What are you in here for?” The first kids says, “a circumcision.” The second kid replies, “Whoa, good luck buddy. I had that done when I was born and I couldn’t walk for a year.”

A Jewish man took his Passover lunch to eat outside in the park. He sat down on a bench and began eating. A little while later a blind man came by and sat down next to him. Feeling neighborly, the Jewish man passed a sheet of matzo to the blind man. The blind man ran his fingers over the matzo for a few minutes, looked puzzled, and finally exclaimed, “Who wrote this crap?”

Marilyn Monroe, on being served matzo-ball soup: “Isn’t there any other part of the matzo you can eat?”

A group of five Jewish women are eating lunch in a busy  restaurant. Nervously, their waiter approaches the table. “Ladies,” he says. “Is anything okay?”

Three Jewish mothers are sitting on a bench, arguing over which one’s son loves her the most. The first one says, “You know, my son sends me flowers every Shabbos.” “You call that love?” says the second mother. “My son calls me every day!”  “That’s nothing,” says the third woman. “My son is in therapy five days a week. And the whole time, he talks about me!”

A very elderly couple lived in a large two story house. One evening the wife, feeling quite saucy, called down to her husband from the second floor bedroom, “Saul, come upstairs and make love to me.” From downstairs, Saul yells up to his wife, “I can’t do both!”

A teenage Jewish boy attended a Catholic High School, he was the only Jewish kid in the school. One day in Religion class, the priest asked a very simple question to make sure his students didn’t forget the basics. The priest, wanting to incent his students, held up a $20 bill and said that the first student answering the question correctly will get the money. The question was “Who in history is the most omnipotent and influential person? ” One student raised his hand with the answer -” St. John the Baptist, of course!” The priest, holding back his frustration, said that was not correct. A second student raised his hand and called out, “It’s St. Matthew!” The priest couldn’t believe his ears. Finally, the Jewish student raised his hand and calmly answered, “Jesus Christ.” The priest, though disappointed with his other students, told the student he was right and gave him the money. Class was over. The priest called the Jewish student over and asked, “How is it you, of all people, knew the answer?” The student replied, “Well, the real answer is actually Moses, but hey, business is business.”

Four men who work together decided to go out for a drink before heading home. Upon walking into the pub, they each hopped on a stool at the bar. The first worker, a Frenchman, called out to the bartender, “I’m tired and I’m thirsty, I must have cognac!” The second worker, a German, called out, “I’m tired and I’m thirsty, I must have beer!” The third fellow, a Mexican, called out, “I’m tired and I’m thirsty, I must have tequila!” The fourth, a Jewish guy, said, a bit under his breath, “I’m tired and I’m thirsty, I must have diabetes!”

An old man whose last days are upon him lays in bed in his home. He smells his wife cooking his favorite kugel dish. His grandson comes to visit. The old man asks his grandson, “Daniel, what I would love more than anything right now is a piece of your grandmother’s kugel.” The grandson obliges and goes to the kitchen to retrieve a piece for the old man. After 10 minutes, the grandson returns empty handed. The old man is surprised and wonders what happened. His grandson replies, “I asked grandma for a piece but she said she is saving it all for the funeral.”

Two old friends, Moses and Saul, attended synagogue for many years together. One Friday night service, Saul declares he is finally going to retire and that he is going to pray extra passionately to God who will hear his cry to win the lottery and retire comfortably. Well, a week goes by and, as usual, Saul sits next to Moses in temple. Moses leans over and asks Saul if God heard his plea and how much did he win in the lottery. Saul, a bit embarrassed and perturbed, tells Moses he didn’t win anything that week and is beginning to doubt God’s interest in listening to his prayers. Before leaving, he tells his friend he’ll give it another try. Another week goes by and again in temple, Saul sits next to Moses. Moses again leans over to Saul and asks the same question. “So, Mister Millionaire, how much did you win this week? ” Saul is visibly angry and declares to Moses, “For years I’ve proven my faith to God by coming to temple every week and praying mightily. And do you think the good Lord listened to my prayers at all? All I asked was simply to win one lottery and what do I get? Nothing! As far as I’m concerned, there is no God and I’m never setting foot in this place again.” On his way home, the skies darken and, directly above his head, a beam of sunlight shines directly on him, followed by a booming voice, “Saul, meet me halfway, buy a ticket!”

An 80 year old man had a birthday and his friends wanted to give him a special gift. The day of his birthday, his doorbell rings. The old man answers the door and there stands a beautiful woman in a negligee. On seeing her he asks, “Who are you?” The woman says, “I’m here to give you super sex.” The old man responds, “I’ll take the soup.”

A Rabbi who does circumcisions, called a mohyel, has been doing his job for 30 years. He’s different from other mohyels in that he saved all of the skins he ceremoniously cut from infant Jewish boys. As if that wasn’t bad enough, he stored them in plastic bags. One can imagine how many he accumulated over his entire career, as did he since he was running out of space to keep them. He thought hard about what to do with them. After some thought, he decided to bring them to a tailor. Entering the tailor shop, he went up to the counter, rang the bell, and out walks the tailor from the back. The Rabbi lays all the bags of saved tips on the counter and declared, “For thirty years I have saved these skins and I want you to make something beautiful from them.” The tailor looks at the bags and the Rabbi and responds, “Rabbi, I’ve never had this kind of request before, but for you, I’ll do my best. Come back in a week and I hope to have something for you.” The Rabbi leaves and returns a week later. Anxious, he says to the tailor, “Nooh, what have you made for me?” The tailor, a little worried about the Rabbi’s reaction says, “Rabbi, this was more challenging than I first thought. Give me one week and I will have something beautiful for you.” The Rabbi, disappointed, left. After another week, the Rabbi returns, this time, he is determined to walk out with his prize. The tailor, feeling quite confident, asks the Rabbi to sit down. Once seated, the tailor hands him a small box. The Rabbi can’t understand how all of those skins would fit into such a small box. The Rabbi opens the box and pulls out a finely tailored wallet. Visibly disturbed, the Rabbi raises his voice at the tailor. “For thirty years of saving skins, all you can come up with is a wallet? ” The tailor immediately responds,” Relax Rabbi, rub it a few times and it turns into a suitcase! “

An old Jewish salesman worked for a fabric company selling cloth, trimmings and buttons in the garment district of New York. He had a steady route of clientele. One fellow on his route would never buy so much as a spool of thread from the salesman, yet the salesman, who’s name was Moses, kept visiting the client just to see if one day he would be willing to buy anything from him. The day came when finally Moses decides it’s time to retire. On his last day at work, Moses traveled his usual route to take one last order from his clients. Of course, he stopped by the client who never bought anything from him. Moses asks his client, “Joe, for 25 years I have visited you in the hope you might buy just one thing from me. Today will be my last visit because I decided to retire. To help me make my career feel complete, I beg of you to buy anything from me, no matter how small. Could you do that for me? ” Joe looks at Moses and feels a moment of generosity and says, “Fine, I’ll honor your request for the only reason that you have been so persistent. I will order some ribbon the length being from the tip of your nose to the tip of your penis.” Moses couldn’t believe his ears and thanked his client profusely. It took about two weeks to finish the order. The delivery truck pulled up in front of his client’s shop and the driver started to bring in box after box of ribbon. Joe, barely containing his anger, immediately called Moses to find out what is happening. “Moses, what the hell is going on. All I wanted was a short piece of ribbon that was the length between the tip of your nose to the tip of your penis. ” Moses replies,” Joe, the tip of my penis is in Poland! “

Two men sat next to each other, one older Jewish man, the other was Asian. They never met before and didn’t say a word to each other. After a few drinks, the Jewish fellow abruptly stands up and punches the Asian fellow off of his stool and in a raised voice says to the Asian man, “That’s for Pearl Harbor!” As the Asian man gets up off the floor he says, “Wait, I’m Chinese, it was the Japanese who were responsible for that.” The Jewish fellow replies, “Chinese, Japanese, you’re all alike.” They both continued drinking. After a short while, the Asian man abruptly stands and punches the Jewish guy off of his stool and says in a loud voice, “That’s for sinking the Titanic!” As the Jewish man gets up off the floor he says, “The Titanic? That was an iceberg.” The Asian fellow replies, “Iceberg, Greenberg, you’re all alike.”

An old Jewish man routinely eats at his favorite restaurant. He usually orders the same things, a bowl of matzo ball soup with a side order of gefilte fish. The waiter comes out with his food and sets it down in front of the old man. Before the waiter can leave, the old man says to the waiter, “Vater, I vant you to taste my zoop.” The waiter responds, “I’m sorry but that is against restaurant policy.” The old man makes the request again, “Vater, I vant you to taste my zoop.” The waiter once again answers, “I’m sorry sir, but I absolutely cannot do this, I’ll get fired.” The old man was not going to give up. “Vater, I insist you taste my zoop!” The waiter, not seeing a way out of the situation gives in and goes to grab the soup spoon. He discovers there isn’t a spoon on the table and says to the old man, “I’m sorry I can’t taste your soup because there is no spoon on the table.” The old man looks up at the waiter and says “Aha!”

More to come… In the meantime, click the video below and keep laughing.

Old Jews Telling Jokes

Matters Of Life And Death

I think this image sums up pretty well what we’re all feeling right now. Staying inside, hoping that by staying behind the curtains that the Angel of Death won’t see you and “Pass over” you (full pun intended here). In this strange time, we’re thinking about death more often because we’re hearing about it every day. I will say it’s easier to think about the death of others rather than our own mortality. Yet now, it’s getting harder not to. And I think it’s a good thing.

The mother of a close friend of mine had a great expression: “No one comes out of this life alive.” How true. Between my own prognosis and the Coronavirus pandemic, the balance between the two is definitely on my mind. Should I contract Coronavirus, it’s like hearing the gangster in a 1930’s film say “Its coytens for ya, Copper.” As much as I try to suppress my thoughts on mortality, it gets harder with the scourge of the virus, literally encasing us in an invisible fog. Anyone walking through my door could be the Angel of Death who has sneakily taken over the body of a caregiver or acquaintance. This is forcing me to confront the inevitable.

Given that uncertainty, I’m now starting to mentally process the risks and the “What If’s”. There are things I’m doing now to prepare for the time that life ends for me. If not now, when? If anything this pandemic should do for us is to force us to think about how we prepare for own passing.

My journey started when I was asked by my palliative care physician to review my current health directives. A step in that process was to complete a POLST form which adds specificity to the medical directive. There aren’t many questions on it, but each one confronted my greatest fears. They include what a medical professional should do if I become unconscious and unable to communicate. Also what should they do if I can’t breathe, eat, or drink on my own? To be on a ventilator or not, or putting in a feeding tube or not? Wow, talk about life decisions – these are for real. When talking to my palliative care physician, who is highly trained in terminal illness, I found there is no real instruction book one can refer to to easily come up with the right answers. This is all self study. It’s a short answer question that turns into an essay on your own life. The good news from this grim scenario is that your answers can change over time and you’ll still get full credit for it. Most importantly, it takes the burden off Mary Ann from having to make those decisions when I am unable to. The last thing I want for her is to feel uncomfortable at best or regretful at worst.

What I just discussed are the nuts and bolts of preparing for my own death. The harder part is how to be at peace with myself when the time comes. I started going deep into myself, thinking about what my wishes might be, what do I need to do for my family and friends so that both myself and they can be at peace. What I really discovered that when thinking about one’s own death, you have to start with your life. You need to think about what the most important things are in your life. Is it family, friends, community, the earth, etc. It takes clarity on your own life to prioritize what you want to leave behind. Of course, your first response is to say everything, so all the more reason to sort your true priorities to get to five of them.

 Once I completed the POLST, I started looking to faith, wisdom and resources for help. Looking into faith I was taught early on that Jews didn’t believe in resurrection or hell. My vision was that I always going to join my parents and family in heaven, which I assumed was going to be in a pretty nice neighborhood. The biggest miracle I had hoped for was that when I did see my mother again that she would have mellowed out and that both my parents wouldn’t be fighting all the time. The pristine and perfect notion of heaven was corrected when I came upon an article that stated, “... the Hebrew Bible mentions neither heaven nor hell: it speaks of “she’ol,” a dark underworld to which everyone goes after death, regardless of how they acted during their lifetime. There is also only one chapter in the entire Hebrew Bible that refers explicitly to a collective resurrection of the dead in the future (Daniel 12)… The idea is that different souls have different destinies immediately after death. The righteous are rewarded in heaven and the wicked are punished in hell. But the dominant view in Judaism has been that the punishments of hell are temporary, lasting up to 12 months. Once transgressors have paid for their transgressions in hell, they can move up to heaven. the dust returns to the earth, where it once was, and the soul returns to God who gave it.” (From an interview by George Yancy with Moulie Vidas, The NY Times, March 2020.)

Yahrtzeit Candles (Jewish Memorial candles) – crossroadhospice.com

Well should I be nervous and I am totally screwed? I always thought that if I followed the Ten Commandments I should be all right. But I guess I should pack lightly for at least the first year where it will be pretty warm with no hope of getting a tan.

I recently heard a saying that God is not a rescuer, but an enabler. In discussion with my palliative care physician, he suggested I read a book called The Four Things That Matter Most by Ira Byock, MD. The four things he declares that what we should all be saying to those we care about are: Please forgive me, I forgive you, Thank you, I love you. I started embracing some of those declarations and found they lifted some burden from me after I said it to someone I knew who I cared about. I started saying Thank You more to family, friends, and especially my caregivers. I’ve also been trying to say I Love You more often. In earlier times, I had a hard time saying it (and being a Jewish male didn’t help either). I find it easier now because I feel like have a lot of time to make up for and wanting to be more and more comfortable with it. In terms of asking for forgiveness, I feel I’ve always managed to take responsibility for my actions so asking for forgiveness was easy for me. But forgiving others, now that’s tougher for me. I had a friend who sadly experienced a violent end. He was always a bit of a trickster, but also someone who would do anything for you. There were many times he would piss me off to no end. I would get angry and go radio silent with him until I calmed down before I had the temerity to reconnect with him. (I mentioned in a previous post that I always had a hard time letting go of friends.) I never once thought to say that I forgave him. Then I lost touch, until I found out he had passed away. I felt awful, not just for his passing, but that I never had the chance to forgive his transgressions. There’s a saying that truly fits this scenario, “It’s always too soon until it’s too late.”

Finally, one of the resources I was introduced to is called The Five Wishes. It’s a deck of cards, each with a wish that a dying person would want in order to be at peace. As I went through the deck, many of the wishes seemed obvious. But there were some that made me really think. As tough an exercise that it was, it helped me prioritize the things I want to happen most when it’s time to say Adios. First, I picked fifteen, then resorted down to ten, then finally down to the last five. When I was done, I again felt a sense of relief for myself and for my family.

At this point, I’m sure you’re curious what I chose. Here they are:

  • To feel like my life is complete
  • To not be a burden on my family
  • To not die alone
  • To be able to say goodbye to important people in my life
  • To be free from pain

I’m sharing this because I hope you, dear reader, will take this opportunity to take your fears of death and take the time to think whether your prepared to face the inevitable. My hope is not to frighten you more than you already are. Hearing the number of fatalities each day seems like it’s getting closer each day. But I feel that if you’ve taken care of yourself, then have faith in the randomness of it all that this will bypass you and that you will survive. I actually have the same hope as all of you, even though I am extremely vulnerable. Yet the one thing I can say is if the worst should happen I can take some solace that I have done some of the hard work ahead of time. That doesn’t take away from how difficult it will be for me to say goodbye to my wife, my kids, my family, my close friends. But I can say I’ll be more at peace.

My point here is to meet death with life. All of these decisions you consider have more to do with life than death. Your directives are about keeping you going. Your wishes are about your loved ones, a sense of closure, and how you want to be remembered by others. These are meant to free you up so you can enjoy life now with less baggage and less worry. It’s something you control so why not do it?

More to come…

When Life Meets Death - Chapter One: The Exchange - Wattpad

The Price of Freedom … A Passover Story

To remember those still in forms of bondage

Passover is the story of freedom from bondage of the Israelites from the ancient Egyptians. It’s the story of their pursuit to achieve the freedom to follow Hashem, the omnipotent one invisible God. But the price of that freedom was high. Wandering the desert for 40 years, constantly being tested by God to trust both the spirit and Moses and to keep their eyes on the prize. Passover became my favorite holiday because it was a platform to equivocate allegory with our own modern day lives, especially my own.

Mary Ann and I hosted Seders for over 20 years. Last year was particularly memorable for us both. This time last year, I had a pretty bad case of pneumonia. I was getting very congested and had trouble breathing. We went to the emergency room. It was very busy that night. We were sequestered in an exam room for 14 hours because they didn’t have a bed for me. Once in the room, treatments started and in a couple of days, I was doing much better. But they kept me in the hospital for a week’s time. I have never in my life been in the hospital for that length of time. The doctors wanted me there for observation and wouldn’t release me until each specialist signed off and each piece of equipment they ordered for me was there so I could take them home. The day I was to leave was one day before our Seder. The doctors weren’t comfortable releasing me because of a snafu with my respirator and so they kept me in another day. The next day was the evening of Passover at our house. Tables were set for 25 guests. The hospital staff were saying goodbye given everything was good for me to be discharged. It was getting late in the afternoon and finally the discharge nurse came in. She noticed one piece of equipment wasn’t there and refused to discharge me. Mary Ann and I were furious. Mary Ann would not accept this and started making calls and talking to hospital staff. (I started singing “Let my Harry go!”). Mary Ann was successful and we got home about an hour before people started arriving.

This experience made me feel I was in bondage. I couldn’t physically walk out and one person had control over me. The price of freedom was having to vigorously advocate for oneself, which Mary Ann did effectively. ALS robs your freedom physically and your independence. It makes you dependent on others to stay comfortable, productive and alive. It also makes me more attuned to others less fortunate than me. I’m keenly aware of how fortunate I am compared to others with ALS. I have a loving family and community of friends as well as the resources to enhance my independence through technology. There are so many others who are abandoned by family and friends when they became ill or don’t have the means to survive well.

Passover has always been memorable for me. When I was young, we had Seder at our apartment in Brooklyn. I remember my “aunts and uncles ” (some family but mostly friends of my mother), many with numbers tattooed on their arms, telling stories in Yiddish. I think about the price they paid for their freedom. At my own Seders, those memories prompted me to reflect on those who are still not free, such as asylum seekers or modern day slaves, as well as what enslaves ourselves, in my case of extreme physical disability, or other things that restrict our personal freedoms.

Let My People, and others in bondage, Go! (image by Ruth Lindsay)

It is a challenge for each of us to make a personal resolution to do something to help ourselves and/or others in need. We still have slavery in our world, we still have civil rights being denied, and homelessness growing. We have to believe that we each can do something. Passover reminds us we were slaves once and our faith set us free. The rabbinic sages expanded the interpretation of slavery to indentured servitude and anything that enslaves us. In modern day context, that might include addictions, abusive relationships and poverty. My passion was to break down walls between religious groups. Think about what is yours. Regardless of whether you observe Passover, Easter, Ramadan, or a New Year or Harvest, it’s a time for reflection and renewal. I encourage everyone to think about what is the price of freedom. Most of us are free from many of the burdens others face. There is a price of freedom, so let’s all chip in. There is a saying that goes, freedom will likely not be completely won, but it can be easily lost.

More to come…

I sing the body politik…

My parents belonged to this Socialist organization called the Workman’s Circle – circle.org

I wasn’t sure that sharing my political views and values would be interesting or inspiring, or even divisive, but I feel this is something I want to share. I’m fully aware that I may turn some of you off, even piss you off. Know that is not my intent at all. I’ve learned, as I’ll explain later in this post, that some of us won’t want to hear or be persuaded by my views and that’s okay because I’m not here to do that. If anything, I hope it gives pause for thought. And if not, then I hope you’ll read what I have to say, then judge me.

Since the time I was in high school, I always loved to talk politics. I’ve always felt getting involved in politics was an obligation as an American citizen. I also understood that my life and the lives of others were directly affected by politics. Without direct involvement, I wasn’t meeting my obligation as a citizen. I didn’t want to treat politics as a spectator sport.

I’ve always been a liberal Democrat. My mother was a Democrat once she became a naturalized citizen. And no wonder, she was a Socialist in Poland as were most of the Jews there. Because of anti-Semitism, they fought for equality and workers rights, until the war made it a moot point. When refugees came to the US, they brought their convictions with them. My mother was not overtly political, but she had an opinion on which politician was most honest and had a heart for others. She was also a member of a Socialist union here in the US called the Workman’s Circle (in Yiddish, the Aribiters Ring). Both of my parents are buried in the Workman’s Circle Benevolent Society’s section of a large cemetery.

My true political upbringing started with the Vietnam War. I saw the waste of human life the conflict created. It created a great divide across the country. I was also scared that I would be called to service by the draft. It was not until the war was virtually over when my name came up in the lottery. It was 1973 when I was 18 years old. I attended all the anti-war rallies in New York City, manned tables for the Vietnam War Moratorium Committee, argued with John Birch Society members and was called names by conservatives. I felt I earned some grit during those years and it stayed with me ever since.

Memorabilia from the Anti-war era that I have displayed on my wall ( Thank you Andy)

I moved on from being a radical to try and make some small, positive changes in the world instead of just joining protests. One thing I did was volunteer at a NY State mental health institution. I likely mentioned how horrible the conditions were there. I felt I was making some contribution to the residents there. Another contribution I made was supporting a fledgling organic food movement. I helped found an organic food co-op, based on the principles of a true cooperative. Everyone had to work to be a member. We rotated jobs and made sure everyone had a task. We started out in a friend’s basement, buying vegetables and grains in bulk, everyone buying what they needed, and making sure everyone had their fair share. There were 11 of us to start. Gradually we outgrew the basement storehouse because more and more people were joining our buying club. At that point, we all met together and decided to find a small storefront to house our idealistic cooperative. We all pitched in to get the place ready, building shelves, painting, cleaning. It felt communal and we knew we were independent of “The Man”. Power to the People!

The 16th Street Food Co-op in 1976. We worked together to build the storefront. In two years, we grew from 11 of us to 100 members – Bklyner.com, 2012
The food co-op today with over 3000 members – Flatbush Food Co-op

Those experiences set the course for my politics ever since. I was always concerned about fairness and justice. I began to work for Democratic Presidential candidates campaigns among other social causes. Then in 1981, I felt I needed a break from New York City and moved to California. Once landed, I thought I finally landed in friendly territory. I found that I lived among mostly like minded people. There wasn’t the political diversity like New York, but I got comfortable pretty easily. No matter where I worked, I met liberals like myself. The political culture I was living in made the conservative political landscape I experienced in New York all the more farther away.

Trying not to isolate myself completely in my California bubble, I’d listen to Fox News to learn what conservatives were thinking. What I heard was more and more divisive and extreme opinions. I listened to Newt Gingrich and his flaming missives. I noticed the erosion of compromise in Congress. I read an article that introduced me to the beginnings of the great divide we’re experiencing today. It started with Newt Gingrich and his strategy to have Republicans no longer fraternize with Democrats outside of Congress, not even to carpool with them. To follow up on this, read the article in The Atlantic about the background of this movement.

The political divide worried me, but also made me curious not just why this was happening and what was the mindset of conservatives who were supporting this move. I believed we were a country dedicated to compromise as a pillar of our government and here I was seeing it slowly erode. I really wanted to understand the mindset of those who exhibited such staunch emotions, not just conservatives, but liberals too. Then, I stumbled on a book called The Righteous Mind, by John Haidt. The author’s focus is on the psychology of established moral values. Through extensive study, he discovered five moral values that drive our opinions, emotions and affiliations.

Below are the five foundations of Moral Psychology.

  • Care: cherishing and protecting others; opposite of harm
  • Fairness or proportionality: rendering justice according to shared rules; opposite of cheating
  • Loyalty or ingroup: standing with your group, family, nation; opposite of betrayal
  • Authority or respect: submitting to tradition and legitimate authority; opposite of subversion
  • Sanctity or purity: abhorrence for disgusting things, foods, actions; opposite of degradatio
    • Wikipedia – Moral Foundations Theory

Without belaboring the results of his research, I want to mention he spends a good portion of his book on how these foundations overlay across liberals and conservatives. In a nutshell, liberals lead with Caring and Fairness, whereas conservatives lead with Authority, Loyalty, and Sanctity. To get a better picture of how this works, read this article that talks about the divide between liberals and conservatives politically. My point here is that both groups are wired differently and that by considering this, we can at least humanize folks on both ends of the spectrum. What I will say is that the demonizing of people and weaponizing of the media and events by Trump and his minions is unconscionable to me since the sole purpose is to increase our divide even more.

Seen at a Trump rally – Daily Koz, 2018

So where am I currently in politics? I am voting my moral values. I think these last three years have seen a depletion of trust, stability, and decency. Many of us can’t recognize the country we grew up in. I feel we survived Nixon, yet this is the biggest test we, as citizens of the world’s greatest democracy, must overcome. Interestingly enough, my foreign friends and family have said to me that we’ll get through this like we have before. I’m trying to believe they’re right.

Getting back to my liberal roots, I am a bit less radical than in my past but no less concerned about how people will be affected if Trump is re-elected. I strongly believe in a social democracy much like other countries who focus on their people, knowing that is what makes a country great. The upcoming election is our opportunity to reverse the damages that have been done to our democracy and to right many wrongs, in my humble opinion. I believe it’s all about numbers now. I have been following the candidates from the beginning and wish there was one person who had the social responsibility of Sanders, the compassion of Biden, the smarts of Warren, the articulation of Buttegieg, and the practicality of Klobuchar. To this moment I’m still struggling with my choice though whomever is the final candidate, I will support wholeheartedly. I will eventually have selected who fits closest to my own values.

I have two hopes for this election. The first is that whoever reaches the top will look beyond the tumult of the primaries and commit his or her focus to include all of the people and talent available to them, and unify the party’s left, right, and center, urban, suburban, and rural, black, white, Latino, Asian across all economic levels. There is an anecdote that, if Abraham Lincoln were to run for President now, he would likely lose. He was not charismatic, a mediocre communicator, and not a favorite of his own party. Yet he won and became one of our greatest Presidents. His success is due in part to his decision to create a team of rivals. He brought people into his cabinet who were opposed to his platform so that he can get early dissent and see all sides of an issue in order to make the best decisions. (I recommend reading the book A Team of Rivals by Doris Kearns Goodwin.) I see rivals in the Democratic primary candidates. They are contentious, don’t agree on many points, and certainly don’t support each other. Read this article by Thomas Friedman where I got the idea about the Team of Rivals.

The second hope is that every eligible voter supports whoever the final nominee is and get out the vote! It’s about numbers and there are more Democrats than Republicans and every vote counts. My fear is that we won’t learn from the last election and voters stay home in protest against the candidate they did not choose. This time is different and I’m optimistic.

More to come…

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.