Angels in my life

In Seoul, South Korea in front of the Amidah Buddha. Amidah in Judaism is the standing prayers.

There is a belief in Judaism that there are 36 righteous beings roaming the earth at any one time and that they appear to you through others at your greatest time of need. They are called the Lammed Vov. It could be a random statement of positivity from a stranger, or someone who says something that makes you reflect deeply in the moment. Think about a time you encountered one yourself. I’ll talk about a few angels who came into our lives.

To put my angels into context, I have had a few tragedies in my life. The most challenging was when we lost our house in the Oakland fire. We lost everything aside from some ceramics whose glaze melted off and some jewelry which was blackened. (Mary Ann had the gold melted down and reformed into a simple commemorative bracelet. ) It was traumatic to see everything you owned in a pile of ash. It wasn’t so much the day to day stuff, but the irreplaceable things: photos, my collection of Vietnam war protest buttons and my musical instrument collection. After the fire, we had to scramble to find a place to live, replace our clothes and sundries and try to normalize life for Max, who was 3, and Lucy, who was 6 months. Tall order, no?

Given the fact that 3,000 homes burned that hot, dry, and windy day in October, there was a lot of competition for help to rebuild our lives. A good part of Oakland needed places to live. For us, all we were able to take was our kids, our cat, and some clothes. We stayed with Mary Ann’s colleague from work for a week, then moved to her neighbor’s house for 2 weeks until Mary Ann found a rental house in Alameda. Friends donated furniture, the Red Cross gave us a check as did the insurance company to get us started. It was when we had to negotiate with the insurance company that we were lost. That’s when our angel appeared in the personage of James. He came recommended through an acquaintance. James became our guardian against the insurance contractor, the shysters who wanted to build our house, and the Oakland building department. He stayed with us the entire time until we were in our newly built home. He was then recruited by the very insurance company he represented us against.

The other angel is one I’ve mentioned previously, Yosvany in Cuba. He appeared out of nowhere to take care of me. He appeared out of a desire to serve and I was there to satisfy that need. After three days there, helping me in any way he could, we offered him money as a gift. He vehemently refused and said he did it all from his heart . He then started to cry with tears of affection.

Yosvany and me at Hostal Don Pepe. He was truly my angel in Cuba

What this taught me was how important it is to be able to accept someone else’s help, be it a Lammed Vov or a friend, when you really need it. We can be too proud or feel we have the resources to handle our own situations. I should know, we first refused help from the Red Cross after the Oakland fire and from Yosvany in Cuba. Yet when we put our needs in front of our pride, we were the richer for it . An old friend once told me that if I try to pursue something too hard, I’ll likely not catch it. It’s only when I step back and leave myself open, that’s when the opportunity reveals itself to you. I feel the same when it comes to Angel’s- don’t pursue, but let them enter when they present themselves.

More to come …

A sign in a Budhist temple in Thailand. Actually, you should hug your angel.

Forgive, Forget, Let It Go

Forgive, Forget, Let It Go. These words have had real significance for me of late and would likely have had a greater effect if I adhered to them earlier in life. In the work I did with leaders and teams, I shared these words in the context of change and how we humans need to transition emotionally through change. Whenever we experience a significant change in life, we go through three phases of psychological transition: ending, a time of confusion, uncertainty, and anticipation, and then new beginnings. What I’ve worked on with so many is the importance of ending what was in order to work through towards a new beginning. One needs to identify what was lost for them personally as a result of the change. This is where the three ideas in the title come in. Can I, as a result of the changes I am going through, forgive, forget. and/or let go?

In the past year and a half, I’ve been dealing with a lot of unexpected and dramatic changes. I went from independence to dependence. From walking, biking, building and helping others, to being cared for and trying to be patient while I’m waiting for someone to move me, get me something I need, or adjust me. All the while I’m seeing everyone else around me living normal lives as I expected to. I spend most days at home and getting out only when someone can drive me somewhere. Walks are taken in my power chair on paved roads. I have a full time helper to get me bathed, toileted, and dressed. I’m lifted up in a sling to move from bed to chair. I need help eating, too. And on more than one occassion, I wake Mary Ann up at night so she can adjust my Bipap mask or move my arm. Alright, I’ll stop here, you get the picture. Suffice it to say I’ve experienced a lot of personal loss. It now becomes time to put into personal practice what I taught countless others – how to deal with change.

Getting back to the process of change and transition, I just shared all of my endings. I’ve identified my losses. And of the three concepts I started with, let me start with forgive.

My mom is in the center with me, my sister at far left and my aunt, uncle, and cousins. Our family managed to emigrate to the US after the war.

I am a child of Holocaust survivors. Embracing my Jewish identity was very important growing up, more for my mother than myself ( my father died when I was eight years old). She sent me to yeshiva for my elementary years. When I got to high school, she wanted me to go to a Jewish high school. I drew the line and went to public high school. I felt it was time I joined the real world. I met a diverse group of friends and became a hippie of the times. Judaism didn’t play a big part of my life except for holidays I couldn’t avoid such as Rosh Hashanah, Yom Kippur, and Passover. It wasn’t until I went to college that I made a commitment to attend high holy day services wherever I lived as a comfort to myself.

Presiding over a Passover Seder, a tradition we hosted for 20 years

Being Jewish has been an important anchor for me. In Yeshiva, I learned and lived much about its values and how they relate to real life. During the ’70s, there was a big interest in Eastern religion. I was invited to attend a couple of sessions with a spiritual leader. I did and decided that being Jewish gave me what I needed for spirituality, values and guidance.

After meeting Mary Ann, an Italian Catholic, I knew I was going to have some things to work through. First, how do I get my mother not to have a heart attack when I tell her Mary Ann is not Jewish? When I got over that, we lived together, got married and we started our family. When it came to religious practices, we celebrated Hanukkah and Christmas, Easter and Passover. Max and Lucy started school at a local Catholic school. I allayed my frustrations by going into the school and teaching the other kids about the Jewish holidays.

After moving, we looked for a congregation that was Reform, welcoming, and especially accessible to Mary Ann and the kids. Through a friend, we were introduced to B’nai Tikvah. It was small and accessible. It was where Mary Ann independently decided to convert, where we b’nai mitzvah’d two of our kids, it’s where I became temple President. All of this was because I embraced Judaism as my spiritual heritage and compass.

Then I was diagnosed and I started questioning why God has afflicted me. Even atheists can live to 100. What had I done to receive God’s wrath? Was I not religious enough? Did I not live my faith and its values? Did I not devote time and effort to the congregation? Mary Ann was angry too, so much so that she didn’t want to go back to temple.

I thought about it for a long time and finally decided I needed my faith and my community more than ever. I kind of forgave God and reflected on how Judaism can get me through this.

As president of the temple, with Rabbi Gutterman at the time I held the position

I needed something to hang on to. Abandoning faith would leave me lost in dealing with my new life. I decided to forgive God, and keep the values and tenets of Judaism. I still go to services, am still involved in temple affairs, still keep close to my community. I will say forgiveness was a big deal for me because I was angry and saddened to have been abandoned by God. But I also know that bad things happen to good people and blame is no answer.

Lets discuss forgetting. There are many things I had to forget in the course of life in order for me to move forward. The passing of my father when I was young, the lost opportunity of going to college upstate NY because we couldn’t afford it, being laid off and being passed over for promotion. I have a tendency to dwell on matters way longer than expected. Because of that, I found I held myself back from clear thinking and forward movement. Now, I need to forget how my body worked before, the projects I did before that I can’t now, the spontaneous walks or outings I enjoyed in my past life.

Let It Go is most important for me. As mentioned, I struggled with holding on to emotions longer than I should. I taught my client groups that letting go was critical to moving forward in times of dramatic changes. But I also know that people tend towards the negative side of situations and it becomes difficult to let go. Why is that? Its because our brains detect those situations as threats to our egos, to our emotions and to our survival. It’s a strong, automatic response. I used to have my clients complete a “Goodbye ” card where they would write one thing they were willing to let go of right then, then tear up the paper, throw it in trash, and say goodbye. Sometimes symbolic gestures do work for some. I try to do this mentally these days. I have to let go of my old lifestyle and live my current limitations. I need to let go how I look with my resperator mask on, looking like Snuffalapugus with a tube hanging down in front of me. I have to let go and allow others to feed me when I can’t do it myself . And I have to let go of things that are truly unimportant yet drains my energy and distracts me from the here and now. If there is one skill I would encourage is to learn how to truly let go. More to come…

In Thailand, letting it all go.

The meaning of work

Like many people, there was a stretch of time that I identified myself by my work. And it was for many years. I was also blessed, for the most part, that I liked the work I did and for the companies I worked for. How I define why I liked working is that, again for the most part, I felt my work had some purpose and meaning. I tell you, it’s not often we can all say that, but in my life, I found enough purposeful work to get me to retirement.

I started in Education, first volunteering at a state institution called Willowbrook (bonus points for anyone remembering it and who became famous as a result), and I still friends today with David Rosenstock and Robi Nedboy whom I’ve known since 1971. After that experience I broadened my desire to serve (and to get out of the freaking heat and humidity of New York City) by working at summer camps for handicapped children. The first year was Camp Beaumont, and the next Camp Cochecton. I found these jobs through the Jewish Federation of NY. The most noteworthy of these is Camp Lymelight, which I attended as a counseller in 1973 and 1974 in upstate New York. This experience had a profound effect on my life because of the people that I met through it. I’m still friends today with many I met that I have been in active involvement with over at least 40 to 50 years. You’ve seen many of these friends in photographs that are in this blog already. They have all helped me with their love, given me the opportunity to grow and to learn, all which has guided me towards search for purpose at work.

Camp Lymelight staff circa 1973, getting ready for a staff play. Can you pick me out off this lineup?

During that time, close friends of mine including the Sommers, Buzzy, and Honky (yes, we had hip nicknames – mine was Hesh, short for Herschel, my Yiddish name) moved to California. They would call me periodically to push me into moving as well. I was working for a small special education ea dieschool, not in any serious relationships, and just finished graduate school, it seemed a little good time to move. Also, if any of you were living in NYC in the late 70s, it was a pretty tough place to live . But I still wasn’t ready to fly that fast. I was a die hard New Yorker. I was living in Bensonhurst, Brooklyn (remember Saturday Night Fever?) and still had a personal goal of living in Manhattan or the up and coming Park Slope. But on the salary I was making, that started to seem farther away.

My first job was not in education because there were few jobs for teachers when I graduated college. I was a clerk on Wall Street, which cured me of wanting to pursue anything that had to do with that street. I finally got to teach Special Education for five years. During that time, I went to night school to get my master’s degree. That degree was in designing learning materials and working with the emerging education technologies.

During that time, close friends of mine including the Sommers, Buzzy, and Honky (yes, we had hip nicknames – mine was Hesh, short for Herschel, my Yiddish name) moved to California. They would call me periodically to push me into moving as well. I was working for a small special education ea dieschool, not in any serious relationships, and just finished graduate school, it seemed a little good time to move. Also, if any of you were living in NYC in the late 70s, it was a pretty tough place to live . But I still wasn’t ready to fly that fast. I was a die hard New Yorker. I was living in Bensonhurst, Brooklyn (remember Saturday Night Fever?) and still had a personal goal of living in Manhattan or the up and coming Park Slope. But on the salary I was making, that started to seem farther away.

Soon after arriving in California, attending SF’s NY Street Games faire with my NY transplant friends

Given the crossroad I was standing in, I decided to visit my friends in California for the summer I finished my Masters. My friends greeted me, then hounded me to look for work. And like many a New Yorker who made the same journey West, I convinced myself I’d stay two years, tops. I found a teaching job, then flew home, got a car and trailer, packed my cat and my stuff and drove west. The day I arrived was truly “the first of the rest of my life.”

After a short time in California, I was able to move to Oakland (it’s been called the New Brooklyn, which quelled my need to return to Park Slope). I also was a resource specialist in a high school, which was meaningful to me. My second year I worked for the Oakland schools. That’s where I met Mary Ann, and, of course, decided to make the Bay Area my home .

1984 saw a big shift in my career which remaind with me until my retirement last year. I started to work for companies in the up and coming Silicon Valley. I stayed in education (companiescall it learning and dev, essentially designing training for adult employees in subjects I had no background in. I worked some interesting places like Apple, Genentech, Schwab, and Autodesk, among others. In all of this I had to find meaning and purpose. My passion was figuring out how people learn and how to make learning interesting. I also came to Apple at a time of it’s new technologies that launched me into experimenting with the use of technology and learning. Overall, being a teacher and writer were what felt fulfilling. It wasn’t until I got to my last job that I felt my career came together for me. I worked in HR and worked with leaders and teams, helping them become more fulfilled human beings through self-awareness and working together in teams. I learned how to design effective sessions and more importantly how to be a good facilitator. I got to travel and work in Europe and Asia and work with a gamut of cultures. For that, I felt I did make a real difference. I supplemented this with teaching graduate courses in the work I was doing. My plan was to work a few more years, then retire from corporate life, teach my graduate classes and do some consulting. Then life happened. My body started changing and I was diagnosed. I lost that plan – because turns out I really had no plans from the perspective of the larger universe.

My awesome colleagues from Autodesk

On the positive side, roles were changing at work and my role was going to change away from what I loved doing, so timing at least was in my favor. I thought in retirement I would miss my work and part of my identity. I’m happy to report that I’m enjoying it. Mind you it takes a couple of hours to start my day now, but an open schedule with time to rest, read, be with family and friends has taken the stresses I had while working. On reflection, I didn’t have lots of confidence in myself compared to others. I worked hard to achieve a personal best. But now, there are no comparisons – just me and the day.

I have kept up some volunteer work at my temple and try, where I can and how I can, to help others. I’ve heard from some that this blog has been helpful to them. Over the years, I’ve been president of the boards of an alternative high school and my temple. I’ve been involved with an interfaith council and set up dialogues between religious groups to show understanding. These experiences made up for any gaps in pursuit of my passion for Tikkun Olam (repair the world – a Jewish mitzvah) .

I’m a little surprised at how I don’t look back much at my career these days. I have personal pride from the work I’ve done and the people I’ve worked with and those I’ve touched. I’m saving all of my slide decks, but not sure how I might share them and my knowledge with others. But I am really enjoying my most precious time right now. I would encourage anyone thinking of retirement to think about time. The freedom is priceless. In my situation, I greet each day with comfort and joy. My only regret is not being able to physically pursue consulting and teaching, but for others who can, I encourage serious thought about your time. Use it to your advantage. And to those who love their work, I’d say keep at it until you no longer love it. More to come …0

The music of life

With a version of my awesome band the Bay Bridge Beat

I believe everyone has an interest they get energy from and is a life long pursuit. And I believe it’s something that entertains us. That’s because we need elements in life that make us happy. Happiness is a key to my meaning of life. Being happy has been a cure all for me. I’ve found humor to be a step towards being happy (even dark humor – I started calling myself the “boneless chicken”). Laughter has always had a healing effect on me and I love sharing it with others. Mary Ann tells me it’s humor that makes this journey more tolerable. I always love telling jokes, especially Jewish humor, which makes us laugh at ourselves.

Mostly, I have found music to be a constant element in my life that has brought me happiness. Since high school, when I taught myself guitar, I’ve gravitated to friends who were also musicians. My hippie years were taken up playing with friends to all hours of the night. I also remember playing banjo in an old timey band in Central Park on weekends, drawing crowds and collecting enough money for a Subway’s sandwich.

Other fond memories include going to the Fillmore East to see Jethro Tull and Eric Clapton (with Delaney and Bonnie). I remember hearing the Beatles for the first time, Jefferson Airplane, then Black Sabbath and Led Zepplin. Then on the folksy side with Joni Mitchell, CS&N, James Taylor and Simon and Garfunkel.

Most of all, it is playing music with others that has brought creativity, intellectual challenge, and comradeship to my life. After years of being self taught, I felt I was driving without a license that moved me to take music more seriously. I also decided to switch my instrument to bass guitar when someone at work was selling a beautiful bass and amp for cheap. I studied music theory, jazz, and upright bass. All of that provided me the opportunity to play in a rock band, a blues band, a raggae band (being the only white guy in the group), and of course a jazz quintet. I enjoyed playing all of the music, especially jazz. After 5 years of jazz, I got the itch for a bigger project, one that had a lot of energy to it. I had my mind set of putting together a horn-based funk band like the ones James Brown and Tower of Power had. I had no idea where to start. I always had this philosophy that if you leave yourself open, the opportunity and desire will find you.

It actually started at my temple. I wanted to volunteer at temple, but in a way that used my talents and that motivated me. So I started a house band for the temple, called the Tikvah Tones (my temple name is B’nai Tikvah). It was made up of congregants, some who I am still close to today. We would play fundraisers and holidays. The one missing instrument was the drums. Luckily I had a friend who was a drummer who agreed to be a part of this. Soon, I started talking to some of the band members about my idea for the funk band. The drummer, Tom, and I invited Marty on guitar and Barack on sax to join.

I’m a big believer in fate. I believe when fate and your openness to it align, than stuff happens. So it was that I started a new job, and a not a month into my first project, I ran into Casey, who was a consultant on the project. Casey and I used to work together many years ago at Apple. We both played music then. Among catching up on life, I introduced the idea of playing music together. We both were very much into the concept of a big funk band. So between Tom, Casey, Marty and Barack we started down the path of a 10 year reign of the Bay Bridge Beat. The band members changed (including Marty and Barack), but the music and the camaraderie has given me inspiration and challenge for so long, for which I am incredibly grateful. I am known as a connector and music was one activity through which I brought people into my life and to each others lives. A testament to that happened at a fundraiser Marty put together for ALS called Harrypalooza. It had the Bay Bridge Beat and other musicians I’ve played with before as the entertainment and the attendees were close friends and members of my temple’s community, even some I was surprised seeing. But it was music that brought us together early on and kept us together ever since. I’m truly blessed.

It was also music that created a new hobby over the years – instrument making. There is a reverence I have for makers of instruments and my curiosity about how instruments worked. I was lucky enough to find a luthier who ran a workshop on building guitars and Ethan and I went together. My first project was working with him on a beautiful electric bass.

Since then, I built four more. It gave me great pleasure to slowly craft each one, learning as I was going and making mistakes along the way. It was a form of meditation for me working with my tools and wood. I’m proud of my work and have some beauty to leave behind.

For all the things I’ve done in music, I am missing many things deeply now. I look at my basses and I can’t play them. I look at the ones I built and my tools in the garage knowing I can’t work with them. I go to a Bay Bridge Beat gig and watching someone else in my place. Funny thing about this is that my muscle memory (what’s left of it) move automatically as if I’m playing it myself. And of course the comeradery with a great group of people I’ve bonded with over the years.

Loss is a big part of my situation. In order to cross over from loss is to call it out and grieve for it. Then the hard part is letting go. Letting go of our losses and burdens is what I have found to be the key to getting to happiness and mindfulness. I’ve learned one needs to be able to forgive, forget, and let go to realize their potential.

More to come…

My foundations

Throughout my life, I’ve had foundations that have guided my pursuits , interests, and energy. My main foundation has been Mary Ann and my kids.

Mary Ann has been my best friend since we met about 36 years ago. And she has been my rock ever since. She is the strongest person I’ve known. And her new role of being my caregiver is above and beyond what she asked for. This whole journey has taken so much away from us.

I ask myself sometimes if the roles were switched if I could be as strong, tolerant, and committed as she is to me. I think I can given how circumstance directs the actions we take, but I am still unsure. Each day she uses a lift to transfer me from chair to bed to commode. She dresses me, keeps me looking good, and sometimes even feeds me. She is house secretary and van driver. She told me one reason she can handle it is because I can keep her laughing and make light of our predicament. That is a lesson worth learned – humor and attitude have a big impact on how we live out our days. Then again, my situation is not without extreme stress and frustration. I can be demanding of my needs and can frustrate her to the extreme. We’ve been through some challenging situations, between traveling, using medical equipment and just bad days. We can get quite vocal with each other, and then finally apologize, most often me being the one seeking forgiveness. I’ve learned (well still learning since I still need to be better) to be so much more sensitive and respectful to her and all my care givers.

In LA last year. One strong woman.

My kids are my other foundation. They’re all adults now and making their way through their lives. I’m proud of all of them. Max is ambitious and driven to pursue extreme sports and the great outdoors. Since my diagnosis, he has been so much more committed to our family, constantly driving down from Tahoe to hang out and help whenever possible. As our first child and the toughest to raise, he has turned out to be a wonderful, caring adult.

I’m proud of Lucia for taking risks and benefitting from her experiences. Getting through school, a two-year Peace Corps assignment in Nepal, and returning to graduate school. She has taken my situation in stride, taking me as I roll and being attentive. She loves hanging out with our older friends and has plans of taking me to the beach this summer. Her positive attitude is contagious.

I’m proud of Ethan for knowing what he wants and pursuing it. He changed high school and college, reinventing himself along the way. Deciding to go to school in England was a huge risk. But he did it and it changed his life. He now works at California College of the Arts and doing well. I will share he has had a difficult time dealing with my illness but its understandable. I can’t imagine how I would handle this given a reversal of roles. I keep checking in with him to see how he working through all of this. He’s the only one who asked if he was going to inherit my disease. I assured him of the complete randomness of it and must be the least of his worries.

I am content in knowing what mensches my kids are. They are concerned and productive citizens of the world. They follow their designs and are not shy of them. Its humbling how much attention I’m getting from them, though I keep reminding them to not put their lives on hold because of me.

I’ll be honest to say I considered the fact that I won’t experience grand children. I want my kids to have kids only when they are ready. I am at peace knowing likely Mary Ann will have them in her life assuming my kids want them. But that is more of a passing thought. I am focused more on each day I have with them. Yes, it saddens me sometimes to face the reality of a shorter time to be with them, but I’m grateful for the time I do have right now.

At Lucy’s graduation ceremony in Monterey.

Another of my foundations is my sister Anita who has made the effort to be with me every few months. We’ve become closer ever since our mother died. We’ve both made the effort way before my diagnosis to keep close and visit when we can. Mary Ann, Lucy and I were at her home in NJ for Passover about 3 years ago, which was a highlight, as well as my nephew’s wedding in NY. Then my diagnosis brought her out a number of times since. Family support is so meaningful to me. It provides a level of comfort I took for granted for a long time, and now I cherish each time we’re together. Our history brings a normalization to me – especially when during her last visit, she shared old photos of our parents and family. We all come from somewhere and it’s been fun for us to dig into our past to learn more. I guess the lesson learned here is to not put off time with family. Even if the effort might be inconvenient, the pay back is priceless.

A selfie from one of Anita’s visits.

My other foundation is my friends. I’ve been truly blessed to have an amazing set of friends who I’ve known for many years and friends I’ve known for a shorter period of time. I’ve been fortunate to have s many of them near me these days. If not for them, my suffering would likely be overwhelming. And it’s not about the meals they constantly bring, but more importantly the expression of love and commitment. Its humbling because I wonder where it’s all coming from. Was I that good a friend to them? Did I not neglect some relationships along the way? The answers come directly from them. They tell me its payback for all I’ve done cultivating my relationships with them. They tell me I’ve always been the organizer, the connector, the shoulder and the muscle when needed. For that, I say “I accept.” Its a really hard thing for me to do is to accept others help. They ask if I would do the same for them, and of course the answer is yes. So they tell me to shut and enjoy our time together.

What amazes me is the length my friends have taken with me in helping me get out and enjoy life together. In January, they helped me on and off an inaccessible tour bus in Cuba. They got me in and out of bed and helped with toileting during Mens Weekend. And they bring me to ball games and the movies even when I spill my beer and food all over me. I have read that it’s good for ones psyche to help others, but I know it’s not their primary motivation.

My enduring friendships have sustained me over many years. I met my most long term friends in 1973 at Camp Lymelight, a camp for the handicapped in upstate New York. Some I’ve been hanging with for over 40 years. Some friendships were disconnected until many years later when they were rekindled again. One of my passions over the years was to arrange a men’s weekend. This went on for 30 years and is still going. It has provided a wonderful space for 10 of us to build strong relationships. It has been a ritual we all wanted to sustain. And most times, until recently, it was in Yosemite in the winter. I thought we’d be doing this well into our 80s and I hope it does endure, whether I’m there or not. And over the last 5 years, we expanded it to include a summer retreat to include our spouses, called the People’s Revolutionary Weekend.

There’s more about My foundations to come.

Me and my best mate, Barry
Another great group of friends

My life as I know it

Me and my son Max at Thanksgiving in our new home

Where do I start?

For many of you, this picture shouldn’t be a surprise – for others it is likely shocking.  I’m in a power wheelchair on Thanksgiving with Mary Ann, all three kids, our close friends the Meads and their kids, and Mary Ann’s nephew and his partner.  We’re also in our new house, a mid-century modern Eichler home in Walnut Creek.  Everything about this picture and this event is about changes to my life.  

So where do I start?  With my foot dropping last year when Mary Ann and I walked our dogs every morning at 6AM at our other house in Orinda?  Or with going to numerous doctors and check ups and MRI’s and worried looks and denial on my part of the final diagnosis?  Or the rainy day last January when I was officially told I had ALS, where then was followed a parade of health professionals including palliative care to offer their support. Went straight to the Beach Chalet for burgers and beer, and tears.

I’ll make this blog a series of remembrances, both serial and free stream of consciousness, and current events about what my life is like now.  With that, I leave with a picture of me a little over a year ago.  That’s who I was – I am different now.

This blog is not about seeking sympathy. Instead I want it to be about hope, overcoming adversity, and celebrating life in real time.

In the beginning…

It was just after my 60th birthday, my primary physician scheduled me to visit every specialist imaginable to make sure my engine is running well.  Every one, cardiology, dermotology, gastrointestinal, pulminology, urology, proctology, all agreed I was in good health.  I worried because there were two things that were possibly a problem in the future.  First, I have arthritis in my knees and my family has a history of heart disease.  My orthopedist said when my quality of life changes to come back.  My cardiologist said all looks good but let’s put you on a statin just in case. A year and a half later, everything changed.

During our early morning walks with our dogs up and down the hills of Orinda, first my right foot starting dropping involuntarily, then I tripped over my foot, then my thighs became weak as I walked up the hill.  I finally went to the orthopedist to agree to a knee replacement.  I was told, it wasn’t my knees.  I was referred to MRIs and a test with a neurologist.  Finally, in January of 2018, I was diagnosed with Amyotropic Lateral Sclerosis, or ALS – also known as Lou Gehrig’s disease. That day was truly the first day of the rest of my life.  I now know what that cliche means.

Every day is a new day

So now you know how it happened.  I can say this came out of nowhere, literally – no genetic markers, no overt symptoms, no family history – just went from straight from health to disability.  I have a degenerative disease, meaning gradually my muscles lose communication between the brain and the nerve ending in my muscles – so I get weak and the limb stops functioning.  Right now, my right leg has stopped working and my left is slowly going that route. How does this play out?  Well, simple tasks like walking, reaching for things, going to the bathroom, getting dressed, getting up from a chair are all very challenging these days.  I have a manual wheelchair, a power wheelchair, an accessible van, transfer board, commode, walker, among other equipment necessary to get through the normal tasks of the day.  And as each day might cross a new threshold, then a new problem needs to be solved.  The good news, we’ve been doing it.  Mary Ann is my rock as she has been the one who has turned into my caregiver and chief problem solver.  I also found out that through all of this, I am still me.  

Congratulations, you’ve gotten through the toughest part of this blog, but it was necessary for you to have the context for the remainder of this blog.  My hope is that it becomes a positive and inspiring narrative of resilience, hope, and grit.  So read on and join me on my journey.

Power Pose after hiking up the Maiella in Italy with Mary Ann’s cousin, Giancarlo

I know I gave the beginnings and progression of my ALS a light touch, but I believe most people know what it is and how it effects victims. I didn’t want to bring folks to a point that it might feel yucky reading the rest of this blog. I can’t avoid discussing my current symptoms since it defines what I can, and cannot do these days so it will more than make up for how its running it’s course. Truth be told, I heard about the disease years ago and thought this would be the worst possible disease one could get. I never knew anyone with it. I did know people with CP and MS, but not ALS.

Some reflections

Let me go down the path of my journey by discussing what the disease has taken away, but also what it has brought to me. What it has taken was life as I knew it up to the point where I could no longer walk or get on my bicycle. It stopped me from taking the BART to work, driving my car, and especially riding my bike on a beautiful spring morning. It took away visions of traveling to places I have still yet to explore. It also changed my relationship with Mary Ann. She has a new role as caregiver – not what we planned as our retirement plans. All the retirement money we saved now goes to ways that provides quality of life for me, again not what we planned for. It has taken my freedom to grab something off a table, get dressed, sleep on my side, among other simpler tasks. I’m in a wheelchair full time.

I have to say this condition has also given me something, too. It has brought out the overt love and kindness of my family, my friends, and my extended community. It has humbled me to my core values and actions. It has forced me to accept the offerings of others. I’ve learned people need to help and I have learned I’m in the position to help them. It has also reset what I am able to do in retirement which is to curb expectations I had in the past and create new ones, closer to home.

One thing I learned is to not put your life on hold. Since my diagnosis, I’ve been to Palm Springs, Miami, and Cuba, played gigs in my band, and have had many great times with friends. My new sense of urgency has me not turning down any opportunity to be with family and friends. I’m learning the cruise I never took is not as important as being with those you love and who loves. Substituting events is also a new part of my new life. For 30 years, I’ve organized cross country ski trips to Yosemite with a close group of friends. Since my ability to walk has left me, instead we rented a beach house this year and had an exceptional time. It’s now about tradeoffs without comprising the quality of experiences.

My Cuba Trip

Cuba has always been a bucket list destination. I finally got the chance to go with 10 other close friends on a customized 12 day tour just for our group. I went in with eyes wide open knowing Cuba to be a not very handicap accommodating place. I kept reminding the travel agency I was in a wheelchair and they kept assuring me of a good time. Of course, when we all got off the plane from Miami, all bets were off. It became a series of problem solving from then on. If it wasn’t being with close friends and their willingness to make it happen for me, I honestly don’t know how it could have happened at all.

Our first problem was getting me on and off the bus which had no provision for someone disabled. They managed to rig a process that included a metal meshed chair. They would put me in the chair, then three guys outside the bus hauled me up, and there guys on the bus grabbed me in and steadied me. Imagine that 4 or 5 times a day.

Once we got to a destination, I had to decide if I was going to join the group. Hiking, climbing, swimming were out of the question. Paved roads and buildings were fine. Everywhere we went there were obstacles, as well as Cubans who were willing to help. It is a shame on us how we’ve held back the Cubans with embargoes. They were friendly, helpful, and caring.

Mary Ann and I were well prepared for the trip with pee bags, commode, wipes, adaptable clothing, among other things. We used transfer boards to move me from the wheelchair to the bed, commode, bed, and transfer chair used to get me on the bus. I wasn’t prepared for all the lifting to get me in and out of restaurants, but my friends came through every time.

One very special time for me was at the Don Pepe hostel in Playa Larga, or the Bay of Pigs. They were incredibly accommodating to me. One person especially, Yozvany, became my angel. He made sure I was cared for, to the point of helping me in and out of bed, pushing my chair through the village introducing me to his friends and ensuring I was having a great time. This is how the Cubans are.

I am so glad I went. I would encourage everyone, with or without a handicap to go. It’s worth the pains and challenges.

My encounter with local school kids in Playa Largo
Me and my angel Yozvany.

Where I am now

With the Jetters in Yosemite

Now is about being and trying to stay alive. It’s about being grateful and living it up to the fullest. Even though my hands are weakening and breathing is a bit labored, it doesn’t stop me from getting out, being with friends, going to a movie or ball game. This past week, I spent time with dear friends and took them to Yosemite for their first time. It was magical- who says you can’t create experiences while dealing with illness?

I believe we only limit ourselves from what we can experience. More to come …