These past few weeks have been extraordinary. During that time, I’ve been an advocate for ALS by participating in screenings of the documentary No Time To Waste at two of my former employers. The session was basically a showing of the film, followed by a Question and Answer with myself, the Director, and two senior level representatives from the ALS Association. The response from the attendees was enthusiastic and heart warming. At one of my former employers, there were about 30 people. At the latter was over 100! At that venue, there was a showing of the film during lunch, when I was not present, then I was immediately rolled in after the film and the Director and I received a standing ovation. I was overwhelmed. As I rolled in, I said to the crowd that in spite of my years of being a bass player, I’d never received such a reception. That former employer is a biotechnology company that I heard was working on an ALS therapy and I’m hoping it has some impact on the development of the drug. Regardless, I know I had an impact on the group given their reaction to the session.
Participating in those sessions made me feel useful and that I could still have some positive impact on others. Since my illness, I knew I had to eventually retire from work and wondered what I would do with myself let alone make an impact on the world. I decided that I was going to work as long as I could, creating a false hope that working longer proved my progression was going slowly. It was really challenging for me to keep working. Yet, in spite of my descent into paralysis, I was working up until the day it became clear that my mobility was shot and it was hard to keep a regular schedule at work due to multiple doctor appointments. It was then that we decided to apply for disability insurance.
Given that, I’ll let you in on a little secret. For the last few years, all I really wanted to do was retire. Having grown up in a lower middle class immigrant family, I started working at the age of 13. I started delivering groceries. If any of you can remember the days of a delivery vehicle being a modified bicycle with a big box to put the groceries in. A normal delivery was cycling to a four story walk up and carrying the bags of groceries up four flights of stairs because there was no elevator in the building. My back hurts just thinking about it. I worked for a grocery store that was owned by two immigrant brothers, one who had Turrets Syndrome. He would randomly verbalize curses uncontrollably, until one day, his brother yelled at him saying, “Enough, mister doity mouth, get out of my store.! ” You can’t make some of this stuff up. Anyway, from there, I kept working at odd jobs including a dairy store (a Brooklyn version of a bodega), a light bulb warehouse among others. One job I had during a couple of years of college was as a leather craftsman. It was my own business and I handcrafted leather belts, wallets and handbags. My first job out of college was as a clerk on Wall Street, where I worked until I finally got a teaching job. After teaching for two years, I started going to graduate school at night, continuing teaching during the day until I finally graduated, after which I decided to move to California. After two years of teaching in California, I started working in high tech for the rest of my career. Fifty years of working kind of took its toll. In spite of it all, I had renewed energy to retire and do more of what I enjoyed before, including travel, building more bass guitars, spending time with family, bike riding and volunteering, etc.
But, as we all know, life has its ironies. Even before I had a chance to retire voluntarily, I contracted ALS, and life changed completely. Yet, in spite of it all, I still have the audacity to keep going as far and wide as I am able, and retain the wisdom to know my physical limits.
Another major event for me during the past few weeks was attending my annual Men’s Weekend. The same as last year, we went to Pajaro Dunes, a seaside resort between Santa Cruz and Monterey. There were nine of us this year. It felt like every other year we’ve been together. We had a beautiful house right on the beach. I was able to rent a special bed to keep me comfortable at night, hired a caregiver for the morning to get me up and ready for the day (with extra help from my friends), brought all of my necessary equipment and sundries. In spite of all the things that could have gone wrong, such as grossing my friends out with certain tasks associated with my care, getting sick, having my equipment fail, have an accident, and on, I still had an amazing time with my friends. They fed me, mixed me drinks, helped me smoke cigars, played dominoes, drove my chair, and the list goes on to yet another wonderful time. And none of them batted an eye. It was like it ever was.
I was reflecting on this situation in terms of what would it be like if I took the opposite approach and gave into my worries of “what if’s” and decided not to go? I believe I would have felt a hole in my heart and spent time feeling sorry for myself, angry, disappointed, and just plain sad, knowing I gave in and gave up. In spite of all that could have occurred, I found what makes it all possible. It comes down to being vulnerable and open to others helping me. I’ve heard a number of stories of people in my condition that have turned down help from their friends, thus driving them away, leaving themselves alone with no support system and losing out on what every day offers as an opportunity. I love studying human behavior and I discovered that our brains award us for helping others with a shot of adrenaline, whose effect is to make us feel good. On the other hand, when we are rejected by others, we get a helping of dopamine, which triggers our alarms of an imposing threat, thus drawing us away from the situation of being rejected. This is called “social pain”. Interestingly enough, the region of our brain that lights up when we experience social pain is the same place that lights up when we feel physical pain. No guessing here why we have a tendency to withdraw from these situations to save us pain. Where I’m going with this is that when we close ourselves off from others because of embarrassment, pride, denial, etc., we don’t think about the reactions of our loved ones and friends of our withdrawal from them. What we’re doing is causing them social pain rather than give them the opportunity to feel good by helping us.
So, lesson learned. In spite of any worries or embarrassment you might have when you need other’s help, open yourself up, drop your guard, and ask for help. It’s truly a win-win proposition.
We all have challenges. Lord knows I shared many of mine with you. From the mornings when it takes about three hours to get me out of bed to start my day, through the afternoon of feeding me and getting me in and out of my van, through the evening of getting back into bed, I face some very basic challenges. Throughout the day, there are psychological challenges I face, between how the hell did I get here, to how long is this all going to last? I do think about what the end might look like. I’ve been told that it should be peaceful. We should all be so lucky. But in spite of it all, I’ve decided to take control of my future, no matter how long it lasts, and make the most out of every day. I’ve always been a lifelong learner and don’t plan to stop. A few weeks ago, after the screening of the documentary I mentioned above, someone came up to me afterwards and told me that a phrase I mentioned in the film really stuck with him. It went something like “Every day I am grateful because I have a day.” What I meant is that I am going to make the most out of the day I have, in spite of all of my challenges. When I was “normal”, I would worry so much each day about whether I can get everything done that I wanted to that day. It’s about prioritizing what is really important to you and focus on those, despite the external pressures you might feel. All will get done as long as you stick to the basics. Prioritize the important stuff first, like family and time to rest, and enjoy what life has to offer.
Before I’m accused of rambling, I want to leave you with a short poem from Rainer Maria Rilke. It showed up at the end of the movie Jo Jo Rabbit.
“Go to the Limits of Your Longing : “Let everything happen to you: beauty and terror. / Just keep going. No feeling is final.”
I’ve written many times how grateful I am for so many things. It has taken my journey through ALS to truly clarify for me how much I’ve experienced over my lifetime such wonderful people, good fortune in family, career, travel and other acts that has shaped a life. For the most part, my recording of gratefulness throughout this blog was more cursory than some of those experiences merit. Here, I’m going to go deep and by doing so will hopefully give you a better portrait of me over the 64 years of my time here. I will list each one separately so I can provide a level of context that shines a brighter light on each one. My hope here is to encourage you, dear reader, to take a break from all of the worries, dashed hopes, and daily frustrations and take a “happy hour” ( preferably with a cocktail in hand) and take a sip of gratitude to end each day on a positive note.
I’m grateful to you, dear reader, for taking an interest and time to read my blog, commenting on my thoughts and ideas, and sharing it with others. The result of your efforts are encouragement to continue writing without shame or constraints about who I might be alienating or patronizing. Your feedback has given me the confidence to go where I have never gone before. And your sharing of my blog has introduced me to people I either haven’t connected with for some time or whom I’ve never met before. I also get to travel in my mind as my blog statistics show that I have readers not solely in the US, but also Canada, Cuba, the UK, Italy, France, Finland, Venezuela, Israel and Australia. Very exciting. So thank you again, I am grateful for your patronage.
I’m grateful for Mary Ann, who has been my best friend, ally, Caretaker, team member, spouse, mother to our kids, and friend to my friends, who became our friends over 37 years of partnership. It all began in 1982 when we both worked Oakland Public Schools. We met at Bret Harte Middle School and over the course of that school year, we became friends, then started dating. We were very discreet, only the school’s secretary knew what we were doing. No surprise as the word “secret” makes up part of the word secretary. I moved in with her the following year and two years after that, we married. And here we are, together in sickness and in health in 34 years of marriage. One thing that attracted each of us to each other was sense of simpatico given we are both from the East Coast and we both had strong ethnic backgrounds. We are both first generation Americans. Both of our parents arrived in the US either before or after the war. We both grew up speaking two languages at home, hers being Italian and mine being Yiddish. Both of our parents had high expectations and certainly my mom was not of the hugging type. We also both had one sibling, older than each of us, who we are close with. We each grew up in homes that had Old World traditions, sensibilities and of course, superstitions. My mother never left keys on the table, saying it was bad luck. I freely admit it took me quite a few years to break that habit. But I will also be clear that when it came to the food of our respective ethnic backgrounds, Mary Ann’s mom won, hands down ( sorry mom, may you rest in peace). I grew up with a limited number of options of Jewish cuisine. How many kreplachs, gefilte fish, stuffed cabbage, kasha varnishkas, and Ukrainian borscht can one eat? Should be little wonder why I looked forward to visiting with her parents each year during the holidays. Ravioli, pasta with sausages and meatballs, gnocchi, polenta, prosciutto, cheeses, olives, antipasti, and on. And of course, her dad’s homemade wine poured into a bottomless glass. Need I say more? And Mary Ann has continued the cooking tradition, which I am grateful for. I love you, Mary Ann.
I’m grateful for my kids. I have three kids, all adults now. While they were growing up, as parents, we had high expectations for them all, especially Max, our first child. As new parents, we felt we were driving without a license, trying to figure things out as we went. With our second, Lucia, it was tough during middle school, just being a female adolescent. By the time Ethan arrived, we were way more relaxed and more tolerant. There were a number of sayings that dominated our conversation when we were most frustrated. One was about getting through the adolescent years, “Bury them at 12 then dig them up at 20”. Our favorite was “When you lower your expectations, your success rate goes right up. ” That would immediately be followed with, ” No one is dead, in jail, addicted, or pregnant. We’re good! ” Then as they got older, they all went in their own directions. One became an extreme snow sportsman, including a heliguide, and avalanche safety expert. Another got into organic farming, became a Peace Corps volunteer in Nepal, and earned a Masters in international trade. And the other became a product designer and now runs computerized manufacturing machines. Mary Ann always said, “You raise your kids to be strong and independent, and God damn it, they go ahead and do it. ” This not only applied to their choices of profession, but also their choices of partners and lifestyles. I am happy to report that our support of our kids in all those areas, resulted in them all turning out to be good people. One final thing I am very grateful for from them is the parents we met through their school friends, we have gotten very close to and have become part of our community.
I’m grateful for my friends and community. I am blessed with friends I’ve known for over 40 years. We become our own family and support system. It’s amazing to have a group of friends over that period of time because you get to see each other’s families grow and with some of the kids as they became adults we’ve gotten to know them as adults. My own kids have developed strong relationships with my friends and even met them in places such as Japan and Washington DC. Since my diagnosis and subsequent decline in my physical abilities, they have rallied around me by showing up and treating me as myself. In addition to my lifelong friends, I have met such dear friends since moving to California that have joined my long-term friends to extend our self made family who love and support Mary Ann and me. They have even independently set up a schedule for meals to be delivered to us, and to help get me into bed each weeknight, which is no small task,. If it wasn’t for them, I truly believe I may not be living as well with my disease and Mary Ann could truly burn out. If you have friends like I do, keep them close, keep in touch wherever they are and show up for them. I’ve done it my whole life and am now benefiting from it.
I’m grateful for my caregivers and medical support folks. I’ve been fortunate to have been associated with people who are truly committed to caring for me. I feel safe in their hands, knowing I’ll be clean, dressed, and anything adverse with my body will be handled. This tribute is not like the Academy Awards where I’m thanking a long list of people to thank until the music starts and I’m being dragged off stage. My purpose here is to acknowledge, and honor them and recognize that I do not take them for granted.
I’m grateful for the courage and resilience of my mother and her family for surviving the Holocaust, coming to America and bearing my sister and I here. When the Nazis began bombing Poland, my mother wasted no time in packing up and fleeing. At first, her parents weren’t convinced it was the right thing to do. But my mother was insistent and eventually they followed her along with her two brothers and sisters. They lived in the segregated Jewish enclave that was part of the town of Krasnystaw.
Luckily, the town was located very close to the Ukrainian border. As my mother told it, there were Jewish Ukrainian soldiers at the border, assisting refugees in. As part of the Russian empire, let’s just say it was no cakewalk given Stalin was no friend to the Jews, nor to his own people for that matter. They first landed in Kiev. There, they worked in factories to sustain themselves. What many don’t know is that Stalin’s paranoia manifested itself by forcing people to inform the authorities on their fellow Jews or else be thrown in jail themselves. One day, a good friend of my mother’s family, informed on my uncle, who was subsequently thrown in jail. On the day of my uncle’s trial, friends of my family waited for the informant outside the courtroom and threatened him not to testify. He fled. I’m not sure whether the trial went on or not, having banished the star witness, but I do know that following it, my mother’s family was sent to a Siberian labor camp. For over two years, they slept in uninsulated barracks, having to chop their own wood for heat, and deal with a minimum of food. Yet they were resilient and all survived the ordeal until, one day, the Russians opened the gates and told everyone to evacuate. Not being given any means of transportation, according to my mother, the family built a raft from logs, drifted down a river nearby until they spotted the closest paved road. When they found a road, they began their journey to a displaced person’s camp in Munich, Germany. During their time in Russia, my uncle introduced my father to my mother. They married in the camp. Eventually, they were granted passage to the US because my father had an aunt in the US who was able to sponsor them. It was the only way refugees could gain access into the States. The issue was that the rest of my mother’s family could not join them. Instead they went to the fledgling State of Israel. It was 1948, the year Israel received statehood. After a few years, my mother was able to bring her two brothers to the States. Her sister and parents-decided to make a life in Israel. I’m very close to my family in Israel and we communicate often. I’ve been there twice and loved being there, especially with my family.
I’m grateful for the experiences I’ve had through my lifetime, having been able to fulfill a good part of my dreams. The first, of course was having a life partner and having a wonderful family. The next is being able to have a good career. I’ve worked for great companies and was able to work with great people and do what I loved to do best, which was to teach others, whether handicapped children or mature adults at a company I worked for. And those companies provided me opportunities to travel. Mary Ann and I also traveled on our own as well. I’m grateful to have traveled to many states and cities and countries overseas including The UK, Ireland, Scotland, France, Germany, Italy, Sweden, Israel, Cuba, Jordan, India, China, Thailand, Singapore, Japan, Korea, and Australia. How could I ask for more? I dreamed of traveling and I’ve been blessed with the good fortune of going to more places than I dreamed of. And like a “friend with benefits”, going to these places allowed me to experience visiting with family on both Mary Ann’s and my side. The other benefit was meeting and working with people from many cultures. It was such a challenge to learn how to transfer skills and knowledge to others not American. Another benefit was satisfying my curiosity about what it means to be Jewish in other parts of the world. Given my curiosity, I’ve attended services in the UK, Ireland, Germany, Israel, Cuba, Singapore, China, India, and Australia, and visited Jewish sites in Italy. Meeting Jews in a those countries was an interesting exercise in understanding the commonalities and differences between us.
Finally, it’s about food. I am a foodie and having the chance to eat regional cuisine in each of countries was a true gift for me. To exemplify my gratitude, I’d like to highlight, the most memorable food I ate in different countries. In the UK, it was the fish and chips. My favorite place is The Sea Shell. In Italy, it is Zio Pietro in the southern town of Cisternino. There is a restaurant that looks like a butcher shop! You order the meats you want, and you pay by the pound. Then you are seated and presented with incredible roasted potatoes, bread, salad, and wine. Then you start receiving the meats you ordered perfectly barbecued. In Israel, it’s a restaurant in Jaffa called The Old Man And The Sea. Sitting outside overlooking the Mediterranean where you are presented with falafel and an endless assortment of condiments that comes with it. In Singapore, it’s a hotpot restaurant. Hotpot are two different soups served in warmers on your table and order meats, noodles, and vegetables that you dip into the soups and eat with condiments. In India, it’s a walking food tour in Delhi. You taste local foods, ending the day in an incredible curry house. In China, there are too many to list. The two that stand out are an amazing Mongolian restaurant and an amazing Sitchuan restaurant. In Cuba, it was a “palladores” or a private restaurant in a converted room inside someones house. The place we went was just outside Havana, right on the bay. In Australia, it’s about meat, which I had in Melbourne. In Sweden, there is a cold fish restaurant in an ancient covered marketplace. In Thailand, go to a local cooking school and learn to cook delicious dishes and get a tour of the local markets. In Korea, it’s an authentic Korean barbecue restaurant and that allows you to grill your meat choices at the table along with endless condiments and “sake bombs” to drink (a shot of sake dropped into a glass of beer.)
I’m grateful for everyday I wake up and continue to enjoy another day of life. It’s amazing how I took life for granted. I celebrate each day because being alive is something I didn’t really appreciate until I started living with the realization that my time can be limited. I feel a sense of urgency to make everyday count. With that, I keep my schedule busy with visitors and the days there aren’t visitors, I try to catch a matinee, a lunch, or write this blog. I also just go outside and sit in the sun. For my readers with family responsibilities, I understand this is a bridge too far. My point here is to not take life for granted, that it is fleeting. I don’t suggest dramatically changing your life, rather to be conscious and grateful for having the opportunity to be able to go to work everyday, to enjoy life in the way you choose to, and to truly believe that family and friends are not granted but something you work for. I bought Mary Ann a blessing bracelet which has four stones that motivates the wearer to consider four things they are grateful for each day. To some readers, this might seem lofty and unrealistic, but my challenge is that a few minutes of reflection can add to your day rather than detract from it. Think of a routine every day, like working out in the gym, or having a morning coffee, or commuting to work, then during that time, take all of two minutes and think of four things you are grateful for and think about why you’re grateful, what is about the experience that made it come to mind. My idea here is to leave some space each day to think of something positive. I hope it will make the day more enjoyable and lighter.
New Year’s Resolutions… And while we’re in the spirit of the New Year, I first want to wish you all a fantastic year. As far as I’m concerned, I plan to have a great year, too. It’s also the time when we have high hopes for the accomplishments we aspire to achieve. We try to make resolutions. The word comes from resolute, meaning to stick to something we wish to accomplish. Here are some of mine.
I resolve to dig deeper into my soul to find the spirit in me to surface that energy source to make me resilient, grateful, and happy each day I still roam this Earth.
I resolve to keep close to my family and friends and make them feel as comfortable with me as possible.
I resolve to keep my weight up (wah, you’re kidding, right?) In my situation, I was told to keep my weight up because even though I don’t move much, I burn a lot of calories just being. I am grateful that I can still eat like before and, being the foodie that I am, I’m taking full advantage of the edict. If you want to indulge in a guilty pleasure, then do it for me.!
I resolve to write this blog in the hope I can continue to inspire others and meet more of my readers. This has been an experience in expression I never dreamed I was capable of doing. Thank you all for giving me this opportunity.
I resolve not to judge others as they might judge me, especially when they first see me. First impressions and unconscious bias are tough things to suppress, and since joining a class of people who can be misjudged, it’s easier now for me to be empathetic with diverse groups and how marginalization can effect the very soul and confidence in them. Social Justice and equality starts with us.
I resolve to laugh more and cry when I need to. For the longest time, I didn’t allow myself to cry. I thought holding back would impress others that I was strong and steady. It didn’t make me feel any better, but it projected a sense of self I wanted others to see of me. Of late, that has changed. When I seek counseling, I am brought to a deep place I would rather ignore. What I found was that I couldn’t avoid it anymore and just let myself go there. It felt liberating and I felt I actually dealt with the thoughts and feelings I needed to. Now I freely let go and cry it out. As for laughter, I keep looking for new material to share and to continue to laugh as much as possible.
I’d like to end this posting with an anecdote I read recently: A disciple of the Rabbi of Bratislava journeyed far from his home to visit with the great Rabbi. He imagined the Rabbi living in a large home with disciples all around him and grand rooms deserving of the Great Rabbi. Instead, when he arrived, he found a very small house and the Rabbi living in one room with just a desk and a bed. Books were piled on the floor. Perplexed, the disciple asked the Great Rabbi, “Rebbe, where is all of your furniture?” The Rabbi replied, “Where is your furniture?” The disciple, confused replied, “Why would I bring my furniture, I’m only passing through.” The Rabbi responded,” So am I. “
As a teaser for this post, I chose the image of Moses breaking the tablets more as a metaphor for how I felt after my diagnosis rather than what this is really telling. Here, Moses is pretty pissed at the Israelites for not trusting him or God that they were the chosen people. I’d be pissed too. Moses climbs a tall mountain, deals with bad weather, gets these heavy stone tablets, talked law with God, then has to schlep them down the mountain (and if he was then the same age as me, his knees would be killing him) only to find they were partying with a golden calf, worshiping it as a god. I chose this picture because I felt a betrayal by God and I was ready to break my covenant I worked much of my life to keep. The word Israel itself means “to wrestle ( with God) “. That’s what I did for months after I learned of my fate. Belief in faith was supposed to be for me a safe haven, a blanket of comfort. I’ll get into that in a little while.
What prompted me to choose this topic was watching an episode of The Crown. This particular episode focused on Prince Philip and the Apollo 11 mission. Prince Philip watched on TV in Buckingham Palace the live action from liftoff to landing on the moon and back again. When he watched Neil Armstrong set foot on the moon, he was in awe of man’s achievement. Mind you, he was a stoic, hard, and less than sensitive person. He had no sense of spirituality. Instead, he claimed he was a man of action. He said as much when he addressed a group of priests on a spiritual retreat seeking meaning in their vocation. One thing the Prince wanted to do was to meet the astronauts to get their revelations of seeing the Earth from the moon and if God played a role in their experience. He got his wish and was able to get a 15 minute meeting alone with Buzz Aldrin, Neil Armstrong, and Michael Collins. Once they were all seated opposite the Prince, he started working through his list of questions for them. None of his questions were technical, surprising from someone who is so pragmatic, they were all spiritual in nature. He asked what their respective thoughts were as they touched down on the moon and walking on the moon. Their answers surprised him: they said they had no time to think, they had procedures and protocols to follow and to be in constant communication with Houston. Even after the mission, they were just happy they got there and back in one piece. They were good old boys, good soldiers. Prince Philip was floored. He couldn’t believe that such achievement lacked spiritual depth. Later on in the program, he visited the priests again on their retreat and asked if he could join them so he could achieve some depth in his life.
For a good part of my childhood, Judaism was like the protocols and procedures the Apollo 11 astronauts used to get to and land on the moon and then to return to Earth. Those procedures had to be executed in a precise order. And those astronauts were well trained, practicing their routines until it became who they were, devoid of emotional or philosophical distraction, the very things Prince Philip wasn’t looking for from them. And so went my early religious education, lots of protocol and procedure, not so much on spiritual depth. I knew the language and the order of things, but not so much how to use it to live life more fully. The things that stayed with me are the values of Judaism: be charitable, practice Tikkun Olam (repair the world), welcome the stranger, and we are the hands of God. At Yeshiva, we were taught the Torah, the Halakha, Jewish law, (literally translated meaning ” how to behave”) , holidays, prayers, songs, etc. All of that was good for reiterating the tenets of religion, but integrating prayers in Old Hebrew as an adolescent, not so much. What I left Yeshiva with was the ability to walk into any synagogue and know what to do, and little desire to worship on a regular basis. What really turned me off happened just after my bar mitzvah. My local synagogue was a store front shul, attended mainly by elderly survivors of the Holocaust. My plight was that I was just of age to form a minyan (a minimum of ten men in order to conduct a service) . And wouldn’t you know it that every Friday night, there were just nine old worshipers in shul so they couldn’t get started without a tenth man. Given I was just bar mitzvahed, which means I was now a thirteen year old adult in the eyes of the Jewish community so was now duly qualified to be the tenth “man”. Now mind you, in the eyes of US and NY State law, I couldn’t smoke, drink, drive, or vote, but damn, I had the high honor of completing a minyan. You can imagine how I dreaded the Friday night doorbell ring by the rabbi, my mother getting my jacket and sending me out the door to synagogue. The only things that made the time tolerable was that I could understand if they were talking about me in Yiddish ( having grown up speaking it in my house) and getting a taste or two of Manischewitz wine during the kiddush prayers. Thankfully the service was quick because the worshipers knew the order of the liturgy and you can pray in Yiddish faster than any other language, maybe with the exception of Spanish.
By now, you can see why I lost the soulful part of religion and walked away from everything else I was taught. I will freely admit, though, that I also walked away with some strong values and a Jewish identity. To preserve that identity, I made a pledge to myself that I would always attend high holy day services no matter where I was and that has held true to this day.
Fast forward to the time I met Mary Ann, an Italian Catholic, and the agony of breaking the news to my mother that we were dating and would eventually marry. There are no medications besides anti-depressants that could have made that task less painful. When we married, we had both a priest and a rabbi co-officiate the ceremony. That set the stage for how we would celebrate religious holidays, both being true to our parents and tradition. Fast forward even more when we had a young family. We decided to celebrate both Jewish and Catholic holidays. I wrestled with that for sometime even though I felt strongly that I needed to fully honor and respect Mary Ann ‘s traditions as she did mine. After a time, for a variety of reasons, we moved out of Oakland and into Orinda where things changed in a relatively short period of time. After settling into our new neighborhood, I started looking for a temple to join. Fortunately for us we met the parents of one of Lucy’s elementary school friends who introduced us to what has become our congregation for the past twenty years. It was there Mary Ann decided to convert. During that process, she met a group of wonderful women, through which I developed a strong bond with their husbands and we all have been close ever since. So in pursuit of a place to worship, I found a strong and lasting community. Given how grateful I was, I wanted to give back what it gave me. I started volunteering, first by reviving the brotherhood group, next by starting a house band, then joining the Board and eventually becoming President of the temple (and to give you a sense of what that was like, at our annual blood drive, I would always wish the attending nurse good luck in finding blood in me because, as temple President, I had no more blood to give). I felt with all that, I was staying true to my faith by giving of myself so that God would look after me and allow me to pursue my dreams then and into retirement.
Then, without a sign or warning, my body started failing me which then lead to my diagnosis. It was at that moment when I found that all the years of religious training, commitment and service did little to prepare me to deal with it. I felt my covenant with God had been breached. To illustrate this point better, I’m going to try and sum it up with a joke.
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, 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,” Saul, 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 hishead, a beam of sunlight shines directly on him, followed by a booming voice, “Saul, meet me halfway, buy a ticket!”
Where am I going with this? Well, I feel like I not only bought one ticket, but many of them over the years. And what did I win? My dream of retirement? To be around to see a grandchild or celebrate my 50th anniversary? How is it that greedy malicious people live into their 90’s and my future is uncertain, already wheelchair bound? Hey God, whose side are you on anyway? Really, you’re letting grumpy, angry, and bitter people live long while me, a Yeshiva boy, an active temple member, even temple President, is now suffering from a disease that disabled me and will likely shorten my life way short of my statistically expected life span? I felt like the image I chose at the beginning of this posting where Moses comes down from the mountain, having put all of his faith in God ( he even heard God’s voice, damn it), is so pissed that he broke his covenant with God. Likely in his mind, it wasn’t supposed to work out that way. Hey, I couldn’t blame him because shit happens, even to folks like him.
Okay, I feel better now, thanks for indulging me. This type of rage I believe is typical of folks in similar situations to mine. I’m not going to dwell on it, now that I got that rage out of me. So where do I go from here? Like before, what have I learned that can directly support me to handle this? Where is my spiritual safety net? Sadly it’s not what I learned and have been practicing. It was enough for me to consider the same reaction as Saul in the joke above, “There is no God and I’m never setting foot in this place again.” But this is where wonder happens-when extreme adversity shakes you to your core.
I chose not to walk away from my history, my values, my identity, and my faith. It’s true to me that all of my religious protocol and procedure training prepared me to participate in temple when I was “normal”. But now, I ask myself, what benefit do I get from walking away from my identity, my community and even my sense of God? Even through my rage, it didn’t make sense to me to give up on inner faith. I’d be losing the opportunity to finally seek and truly find what my faith can do for me now.
As a result of all this, I decided it was time I really wrestled with God and call in all of my chits. While at temple these days ( I don’t go nearly as much as I used to), I use my time ignoring the protocols of the service and to engage in wrestling matches with God.
I decided to go another round with my faith, though it is a bit on shaky ground until I find out how to make this relationship work. I’m digging deeper to find the strength and stamina to defy the odds and use faith to make life meaningful and to feel confident that there is an energy surrounding us that defines us. What I am beginning to discover is a place within myself that I go to to find solace, calm, and hope. I have to believe that everything that surrounds me that makes life enjoyable and worthy is part of my spirituality, what some, including myself, is considered God. It’s my energy to affect others through my writing, through interaction with my friends and community, it’s the blessing of my family, it was the use of my hands in making beautiful things, it’s sitting outside in my wheelchair with the sun on my face, it’s my ability to eat a great meal along with a delicious cocktail, it’s writing a comforting letter to an asylum seeker and getting an answer back with a blessing, it’s getting sad, then recovering to a better place because I just let something go, it’s still being here for a little longer while others aren’t here to enjoy this crazy world. It’s the ability to decide your own faith and path. It’s all things beyond me yet guide and effect me.
So do I blame God for afflicting me? I do somewhat, but not enough to walk away because I need the spirit and love more than ever. Amen!
About 6 months ago, a former colleague and friend, Michele Wolpe, decided to film a documentary about my journey through ALS called “No Time To Waste” . The documentary was originally conceived as a short pilot for a longer film documenting the inspiring journeys of people going through chronic diseases with courage and grace. It was originally going to be 7 minutes but eventually clocked in at 24 minutes. Michele gave me permission to share it with my readers. In return, she would like to hear your feedback. Fair warning, there are some emotional parts, and likely a surprise for others in the way I look now. Just trying to keep it real.
I’ll start off with a quick apology for being so dark in my last post but I felt it was important to share what it means to be the physical me. In this post, I want to share many of the things that make my life lighter and joyful. It is not so much a message of “stop and smell the roses”, but more about investing in happiness. So let’s lighten up a bit.
I know I can be stubborn about my care and my changing abilities. For some time now, I’ve been writing this blog on my phone using a trackball mouse. Then recently my thumb started stiffening. The trackball solution is fading. Mary Ann has tried to help me position the trackball in my hand for some time, during which we both became frustrated, me with my lagging range of motion in my fingers, making it difficult to use the trackball, and she in constantly changing my hand position to help me out. For some time, she found another way to keep me writing which was eye gaze technology. . It is eye gaze equipment and software that allows me to use my eyes to navigate my computer and to be able to write, which is how I’m writing this right now. With her persistence, she has definitely lightened my load and for that I’m very grateful.
I had an expression I used long ago, “Life is so much easier without a backpack”. It means that we should be taking stuff out of our backpacks instead of adding stuff to our backpacks. When I finally listened to Mary Ann and adopted the eye gaze solution, it felt like I took a bunch of rocks out of my backpack. I’m now working on how to drive my wheelchair independently. If I can figure that one out, it will feel like another load of rocks can be taken out of my backpack. If there is a message here its to encourage you to take rocks out of your backpacks by not overloading your lives by doing more things to handle more than is practical, or to find ways of making life easier. Maybe it’s ordering in dinner instead of cooking, or taking a Lyft instead of driving into the city. We all deserve to take breaks instead of trying to do more and more. Sometimes its best to spend a few dollars to extend the pleasures of life.
Another way I’ve been lightening up is by being with friends and community. A few weeks ago, a friend and I hosted a reunion of friends, all who met in 1973. Forty-six years later, we are still in touch. It gave us a great excuse to reunite and have fun. The weekend was spectacular. Many of those invited could not make it, but regardless, for those who were there, it was important to all of us to know we still have each other, regardless of time and distance. For all of us, taking the time to make it a priority and show up was a realization that life can be capricious and connecting with old friends felt like we were living in the moment. Woody Allen was quoted as saying “95% of life is just showing up.” I think the message is clear, showing up is so important, not just for ourselves, but especially for others. I can’t express enough how much I appreciate when others show up for me. With life being tenuous, not just for me, but also for my friends who are aging, we all agreed that showing up for each other is so important – if not now, then when?
Another example was this past weekend. Mary Ann needed a break. I had arranged for my friend Barry to stay with me overnight while Mary Ann was away. Instead of just him, he came with the three additional friends who are long time attendees of the Men’s Weekend. After letting the guys who are local of the Men’s Weekend know Barry and the Valley Boys were coming for the weekend, three of the four Bay Area guys were able to join and we had an impromptu Mini Men’s Weekend. It’s hard to express in words how happy and grateful I was that we were all together for the entire weekend. It was not just about the conversations or the eating and drinking together or watching movies. For me it was the fact that they all showed up for me.
Another way of lightening up for me is trying not to take life too seriously. It’s not about denying my situation but knowing it could be worse. Last night, Mary Ann and another couple were invited to a high ticket gala for the ALS Association. There were a few of us there in our wheelchairs, I felt grateful that, compared to others, I still have my voice and the ability to communicate and eat. After a few drinks, I felt I could lighten up a bit. I even dressed up in a suit complete with bow tie and my Kangol hat. While I was there, many people from the medical community who have supported came up to me a bit surprised by my being there. I responded by saying it’s really hard for me to miss a party. I don’t like feeling that I have missed out. I even started thinking how I’m going to miss hanging out with my friends at my own funeral when the time comes. Just another missed party. It reminds me of the joke (forgive me if I already told it) where a grandson went to visit his ailing and bedridden grandfather. At the bedside, he asked his grandfather what he could get him anything. The grandfather asked for his very favorite food, his wife’s kugel. The grandson went into the kitchen to get him a piece. After five minutes, the grandson comes back empty handed. Disappointed, the grandfather asked what happened. The grandson responded by saying grandmother wasn’t giving any up because she was saving it all for the funeral.
So are you feeling any lighter? What are some rocks can you commit to taking out of your backpack? One idea might be setting up some time to just talk out something that’s on your mind. Years ago, I used to carpool with three other people who I have become friends with over the years. Every weekday morning, we would take turns driving the long trip down to Silicon Valley, all of us with our own rocks to bear. We would share our joys and adversities with each other under an umbrella of trust we called ” carpool confidential”. What was shared in the car, stayed in the car. It felt good talking things out to get the day started on a lighter footing.
And finally, we need to lighten up about ourselves. Never had I thought I would look like the guy in the picture below. At first, I was self consciousness about how I looked in a wheelchair with a tube hanging off my nose. But, then if Snuffleaupagus and I have something in common, and he is lovable, well then sharing the same snout can’t be all bad. Be kind to yourself, especially in the way you look. We are all a portrait of the Divine’s making, so spend your time on making the most of each day, even if you look like Mr. Snuffleaupagus.
When I hear the phrase “out of control “, I think of a car swerving across a freeway or a machine running, no longer obeying it’s operator. I also think about people whose impulses they can’t, or don’t want to, control. The phrase evokes the image of something that can’t be tamed and can’t be stopped except to some disastrous effect.
My disability is definitely out of control based on the definition that the operator is no longer in control of his machine. As a result, I have lost control of so many aspects of daily living which I have relinquished to my caregivers. My legs are now my power chair and my arms are my caregivers. I still have some functionality in my fingers which is how I am writing this. Thank goodness I found a trackball mouse that works with my phone.
It’s hard sharing this because I don’t like dwelling in dark places of my journey. I do feel there is a reason that will emerge out of this, if nothing else but be in gratitude of what our bodies do for us. My experience these days include staring at a cocktail six inches from my mouth and not being able to drink it without the help of my caregiver. Or not being able to grab a piece of sushi and shovel it in my mouth. Most frustrating is when I am left alone without access to my phone or computer or TV and sitting for what seems like hours, waiting frustratingly until someone comes and gets me. Being fed by others is a little indignity for me too. I am dependent upon how fast or slow they feed me and the combinations of foods that they choose to put on the fork . Nothing stops me from making my needs known though, but it’s a balance between sounding whiny and respecting my caregivers. Finding quality and consistent caregivers is no small feat, so not pissing them off is a priority for me. I have many more examples of what I can no longer do and the hellish frustration that it brings, but I’ll spare the details. I hope you’ve gotten a sense of what being out of control not just looks like but also feels like.
So how do I turn dark to light ? My story here is about balancing dependence and patience. It’s easy for me to ask for all of the focus of others attention so I can get everything I need the moment I want it. That’s the way it used to be when I was in control of my body. Why do I need to give all I had before up? The answer is because if I am going to be taken care of at all by others , then I need to consider their needs and tolerances. The lesson here is how patience can be a virtue if only to reduce stress. Immediate gratification is something I pursued when I was in control but now it’s no longer an option. Stress is unhealthy for everyone and is especially so for me. I’ve learned to create space between my needs and they being satisfied. I find taking a breath and also a short meditation fills that space.
Another frustration is my inability to create my ideas in wood. I loved to build and I loved my tools. My creativity came out in my designs and the final product. On one side of my spectrum was big outdoor projects like raised beds and the other was building electric bass guitars. I’m the antithesis of the joke, “What do you call a Jewish man with a toolbox? A dentist.” If you’ve seen my garage in the Orinda house, you’d know my love for tools. A fond memory is when I sat at my work table with music playing in the background, a small cigar in my hand, rain gently falling, garage door open, and with tools in hand, trying to solve unanticipated problems that building instruments provides. Even then I knew those days were not going to last forever, I cherished them. I now have those instruments hanging on my walls and reflect on the joy of making them, playing them and leaving some artifacts of my passion.
My point here is to encourage anyone reading this to consider trying something new using your head, but especially your hands. I believe anyone can benefit and engage in the journey of creating.
I now have to go back to the dark side again to share something even deeper than what I just shared. Even more frustrating, and frankly very sad and angry what this disease robbed from me is the ability to initiate human touch. Translated means I can no longer walk hand in hand with my wife or hug any of my kids or good friends when I see them (and will spare the subject of intimacy which is the hardest. ) Imagine not being able to hug your kids when they come home to visit or spontaneously grab your significant others hand when you’re both enjoying a concert or movie. I won’t go further into detail since its heavy on both reader and writer alike. I will break into the light and say if you can use your arms then challenge yourself to double the number of times you hug or grab the hand of a loved one or friend. Don’t get me wrong, I get lots of human touch these days, more than ever actually because my friends and family initiate it more than ever. And that’s where the light comes shining through for me. Let me know if its the same for you.
I hope you’re blessed like I am with dear old friends, by old I mean knowing them for over 40 years. Usually there are two things that come up each time we get to be face-to-face. The first is we feel that no time has passed between the time we’ve seen each other, and the second is when we stare at each other’s gray heads and wonder where the time has gone.
Like many, I’ve taken time for granted, working, parenting, fixing, traveling, and on. For all of our lives, we’re constantly moving through space doing and getting things done. I’ve constantly complained about never having enough time, rushing through space, feeling exhausted.
Nowadays, besides my family, time is my most precious commodity. I’ve learned to respect time and to try and get the most of it to the best of my diminished capabilities.
It wasn’t until I read the work of the Jewish teacher and sage Abraham Joshua Heschel called “Shabbat ” that I learned the difference between space and time. If you’re not familiar with his work, you may have seen a picture of him walking arm in arm with Dr. Martin Luther King during the freedom March when he said he was praying with his feet. In the book, he put me back in touch with the true meaning of Shabbat. Its the seventh day when we’re told to rest. He says the first six days are for going through space, but Shabbat is about time; focusing on rest, reflection and rejuvenation. Mary Ann and I decided we’d take Shabbat more seriously and not run errands or feel obligated to get yet another chore done. Instead, we learned to take advantage of the morning, read, put the chore list aside, take the dogs out, have an early cocktail and a leisurely evening. Mind you, we’re not orthodox so our guidelines are a bit more lax in strict observance of Shabbat do’s and don’ts. Our engagement with Shabbat was all about respect for how to use time.
These days, I think more about how to make use of time rather than space. Much of it is not knowing how much time I have to use my fingers to type this blog, or speak understandably, or how long I can enjoy eating take-out. (I have to admit I have been ordering out more than I have before.) And I’m trying to write this blog as much as possible. I’m also finding that though Mary Ann and I love to have our friends and family visit, we also need to make time for each other lately. It’s all about time.
Soon I’ll be hitting two years since my symptoms first started and much has happened since. I’m wondering what life looks like for me in a year from now, but I try not to dwell on it, though of late, I’m being asked to make decisions unimaginable two years ago, each with its own impact on myself or my family. It is an in-your-face lesson in being mortal. We are all mortal and that’s the toughest reality I’m facing.
I don’t want to end this and walk away on a down note. There are two ALS folks who are inspirational. A young woman named LoLo who was diagnosed at age 14 and has already been a model and an actress. Her message is that living should never be diminished because of disability. Another is former 49’er Bob Green who, stricken by ALS has written over 30 books, some using an eye tracking device to type out the words.
There are decisions we have to make on how we use our time and take it from someone who has turned a cliche into reality by being hit by the proverbial bus that its not just time that’s precious but it’s how we use it. Do we just go through space or use our time to enjoy the rest of life with the goal to make ourselves feel we’ve truly had an unregrettably full life. We all need our own form of Shabbat.
I’ve had a credo for a long time that guided my actions: “I live to serve.” Helping others and trying to add meaning to my life was important to me. I consciously followed a basic tenet of Judaism called Tikkun Olam, translated means to repair the world and leave it better than you found it. I started volunteering in high school at a state institution for severely disabled adults. Some of you may remember Willowbrook, the state institution whose exposure made Geraldo Rivera famous. The conditions were horrific. I’ll never forget walking into a ward where a number of residents were walking around naked, peeing on the floor ,no tables or chairs, no games or books, and the employees sitting in a room separated by a window looking into the room. Though at the time it seemed our work was futile, I still felt I was making a difference. That experience led me to a career in special education with which I taught for a number of years.
After moving to California, I went into corporate learning and development. I still found meaning in my work but felt I needed to do something for a broader community. Besides volunteering for political campaigns, I started volunteering at my temple, called Congregation B’nai Tikvah. Tikvah means hope. I started by rejuvenating the brotherhood group. Then I followed my passion and started a house band we called the Tikvah Tones.
Though that work was satisfying, it wasn’t until I joined the board at Holden high school that I felt I could make a difference. Holden is an alternative school for adolescents who were failing the public education system. My oldest son was one of those kids. We were a bit desperate when we found Holden. They worked miracles with him as with all of their students. My son got his diploma and continued his education. Since then I referred a few others to Holden, all who did very well.
I was so grateful to the school, I wanted to pay it forward. I joined their board of trustees at a time of financial challenges for them. After a year or so, I became board president for a number of tough financial years. Those years were gratifying even though I felt we were often on the verge of closure due to low enrollment. Unfortunately during my watch I wasn’t able to make a big difference on the fiduciary side, but I believe I at least kept a vision and sense of hope alive. Now, seven years later, there is full enrollment with a waiting list and they are financially healthy.
By paying it forward, sometimes you don’t get to see what your labors produce in the short term. I read about the first Peace Corps volunteers in Nepal. A few of them planted some apple trees in the hope they propagate. Well, 50 years later, apple orchards are everywhere.
After Holden, I went on to become the president of the board of my temple, B’nai Tikvah. The name means Community of Hope. As president, I had the privilege of helping our rabbi of 33 years retire and hire a new one. I also presided over a shrinking membership and reduced revenue. I tried new approaches to fundraising, focusing the board’s attention on innovative ways to bring new members, and above all, keep a sense of hope for the future. It’s a tough job to take on, given the constant demands by different people who have their opinions of how to run a temple. I used to joke at the temple blood drive that I have no more blood to give so good luck finding any in me. But all told, it was a labor of love. I cared about the community and they cared right back. Now four years later, I’m getting back so much more than I gave. Since my diagnosis, the love that has come from the community has been incredible . I didn’t know what difference I made until sometime after when congregants I hardly knew would come over to me at services to provide wonderful feedback.
Paying forward has really reaped such incredible benefits for me. It’s all the more sweet because I never had any expectations for return. My passion was to serve, which was my reward. Everything else is alchemy, turning my desire into gold. This is how I worship and live my faith.
Before I focus on this topic, l need to return for a moment to my Angel’s. I neglected to mention Kyn. For about 30 years, she was our accountant and financial planner. She made sure we saved as much as possible, reduced our expenses and invested wisely. One thing she pushed us to pay into was a long term care policy. We were young and its use seemed so far away. It’s only now that I need home care all week that I believe it was “beshert”, Hebrew for meant to be. Thank your angels since some seem to prepare us for an unexpected future.
Back to the topic at hand. I, like others I know, have had a bucket list for a part of our lives. My early list included moving to Manhattan, being an accomplished musician, and traveling like my friends did while I worked through college. As I got older, my bucket list changed. Moving to San Francisco satisfied my living situation, learning to play bass and being many bands satisfied my music lust. Then my list changed to more professional pursuits like being a manager, being a good designer of learning , and of course money. Oh, and I wanted to go to Burning Man. I got to some of those, and had to deal with disappointment with others. I have a few regrets I learned to let go. An early one was volunteering for the Peace Corps which I couldn’t fulfill because I needed To work to put myself through college. But I have to admit that I have been satisfied vicariously through my daughter Lucy who volunteered for the Peace Corps in Nepal for 2 years. Another big missed bucket list item was going to Spain, a European country I had not visited yet. I was not diagnosed yet and Mary Ann found a great deal on airfare. I decided not to go because I felt I didn’t have enough vacation time and I was busy at work. I thought I had plenty of time to get there, until I was diagnosed and then things changed. I already created a bucket list for my retirement. It included yearly travel overseas, part time consulting, continue part time teaching graduate school, and especially playing more music and building more instruments. Now imagine one day you were told you had to throw that whole list away because you physically couldn’t perform those tasks anymore. I was so looking forward to a productive retirement. So what next? Like any cross road you could take the high road or you could take the low road. I chose to take the high road being realistic about what I could do going forward. It’s a very different list than before. Mary Ann encouraged me to think locally rather than think about traveling far distances to other places in the world and find joy, peace and happiness right around the corner. So my new bucket list comes up with ideas like write this blog so that I could touch many people, connecting more with my community, and just looking around me to see what I could do in my own neighborhood. I recently heard a piece on the radio by someone recently retired . He decided to stop traveling to far places and just enjoy his local environs. Exactly what I thought, how timely an affirmation for me.
So let’s get on to my new bucket list. The first on the list is to reflect on all of the wonderful things I’ve done so far in my life. I reflect on my amazing wife and kids. I have never taken them for granted. Many of us had our own bucket lists for our kids – to be in a great job, start a family, be “successful “. Well, kids seem to have their own agendas as they mature, no longer ours . Mary Ann and I had a saying, “You bring up your kids to be strong and independent and, damn it, they go ahead and do it.” At our most challenging time with our kids, we also had an expression, “The more you lower your expectations, the greater your success rate. ” I have to say that my kids have definitely filled my bucket list for them.. They are all accomplished in their own right following their dreams pursuing the life they want to live. Mission accomplished. And through it all I’m still married to my bride after 34 years. Mission accomplished again.
My other reflections on what I accomplished are significant once I took the time to think about it. I wanted my work to have impact. It took years of successes and failures to get to my last nine years of my career where I felt I did my best work. When I let folks know I was going on disability, essentially retiring, the feedback I received from those I worked with was humbling. I felt complete. When it came to impact on friends and community, I feel I am leaving the world a little better. On music, I fulfilled my dream of having a big funk band. I did and then years later, its still going strong without me. If you want to hear and see the results of my dream, visit the Facebook page of the Bay Bridge Beat.
Finally, I wanted to experience the world. I have had the great fortune to visit or pass through 26 states, Mexico, Canada, Costa Rica, Cuba, seven European countries and six Asian countries. I can truly say I am lucky and privileged to have maintained my first and only marriage of 34 years, been a parent to great kids, met wonderful people, , perbeen to great places, played and heard incredible music, and ate great food. So what’s on your bucket list? I’d encourage you to add one item for reflections and gratitude. And try not to be too rigid. Make one of your highest priorities to keep your friends close it’ll be close to your family.
I’ve been told one ubiquitous trait I have is my sense of humor. Humor and laughter is something that helped me make friends, diffuse uncomfortable situations, and just makes me happy. I love telling jokes, especially Jewish humor. Here goes (apologies to those who already heard this from me):
“A very old couple live in a two story house. One evening, the wife calls down to her husband from the second floor bedroom: ‘Morty, come upstairs and make love to me.’ Morty, being down on the first floor responds, ‘I can’t do both!’
They say laughter can cure disease. Well, I didn’t get that far, but it sure helps get me through this. I heard more than once that some folks with chronic illnesses are depressed or seek pity. To me, that is a waste of valuable time and makes it all the more intolerable, not just for the afflicted , but to those trying to help. But then again, it’s how I looked at my life generally. Keeping a sense of humor kept friends close and made rough patches more navigable. Maybe to some I came off unintelligent or lacked seriousness, and at this point in my life as an “alta khacker” (meaning an old guy but translated from the Yiddish as an “old shitter”), I say also in Yiddish “Gaye khocken offen yaam”. (It means go poop in the ocean!).
Ok, ok I’ll get serious. Seriously? Nah, let’s keep going. Humor is about storytelling. Like the time I bought weed from an old dealer who wore a Mumu, was tethered to an oxygen tank and had a brochure of different types of weed, including buy two and get the third at a discount. I felt like I walked out of a scene from Frank Zappa’s 200 Motels. Or the time in college when I worked for a dairy store in Brooklyn (we call them bodega now). One Sunday I worked the register and in front of me was a long line of older Jewish and Italian residents. One women asked me to check her dozen eggs. So jokingly I took a marker and lifted each egg out of the carton , inspected each egg and drew a check mark on each one. Oy vey, was she mad! There were some on the line that appreciated the gesture.
In my imagination, I hoped the Marx Brothers should have written the sixth book of Moses. “Life is a joke, the rest is commentary.” Life is a bowl of cherries, Life is like chocolate, Life is like a shark… I like cherries and I like chocolate. Sharks? Fun to look at from the other side of the fish tank. How that relates to life, I’ll leave it to your interpretation. In that case, what if life was like a garbage truck, or a bowl of ramen, or llamas in pajamas? Well, the garbage truck analogy could mean that when you need to get rid of something, don’t always count on someone who will pick up your trash. The bowl of ramen? Maybe that’s about comfort food can ease any pain. The llamas in pajamas one? Hell if I know – I totally made that one up. What’s your interpretation?
Humor still is a part of me. If anything, I look at even my most macabre thoughts of my physical challenges with some lightness. These days, I call myself a stand in for a boneless chicken, or just a bag of spuds. Then again, this chicken can still drink cocktails like nobody’s business.
And now one more from the joke bag:
“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 rightnow 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.’
Humor is getting me through this most trying of times as it has before. Getting older also helps me take things a little more lightly and less seriously. I’m finding that prioritizing having fun and enjoying life more is the gift that keeps on giving each day I wake up. Oh, and a cocktail really helps too. So lighten up, take the time to enjoy something each day, and don’t forget to laugh. There is a saying, “Man plans and God laughs.” Even s/he has a sense of humor. More to come…