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.
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.
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.
Where I am now
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 …
21 thoughts on “In the beginning…”
Beautiful and honest. Filled with love for you and from you. With heartfelt thanks.
Your view of how to live and make the most of everyday- whether they’re easy ones or very hard ones…are stellar examples of how life should be lived. Thank you for inspiring me. You opened my eyes. I loved how you appreciate everything and everyone around you.
I am so glad I read your amazing blog and learned so much more about the person I only knew as Anita’s younger brother.
Loved your view of life as a whole.
You’re a very special man, Harry Wittenberg!
Thanks for following my blog and for being in touch. I have fond memories of my sister’s friends and so glad to reconnect,
You and Mary Ann are finding a way each day to make things work and to enjoy your time with family and friends. We are so proud and humbled to be part of your lives for 20 years and counting. We love you!
The huge loving circle that surrounds you is born of warmth, caring, light and love that you and MaryAnn have shared so freely as you have gone down life’s path. You honor us all by letting us hold hands on this journey with you.
I love that you know you are still you…and we are all the better for it! Keep writing Harry!
Reading your blog has shown how you are loved by and how you love your family ands friends.. They are your gift and you are theirs. Your honest personality shines through your writing. I wish we had gotten to know one another better.
My beloved baby brother, you always have been, and are now more than ever, an inspiration to me.
You still crack me up, funny as ever, happy, concerned. Thank God your still you. You make it easier for the rest of us to go through this journey with you. Love you
I just adore you and Mary Ann so much. Thank you so much for sharing this.
Harry, although I’ve known you for many decades, I discover anew the depth of your many talents and strengths — your humor, generosity, joie de vivre and your open heart all made manifest in the big tent you and Mary Ann have created. Looking forward to your next post!
Dearest Hesh, I can still remember seeing you the 1st time at Midwood High – That HAIR!! Glorious. Wafting of patchouli oil, overwhelming! I remember the parties at Polk Street – you and Mary Ann can throw some parties! I remember you coming to my aid when I began cutting myself – Mary Ann gave me a heart shaped rose quartz which I still have. The picture with Yozvany shows a ‘Hesh smile circia 1974’. You are SO YOU and for that my heart sings. As usual you are showing us all how to live well. I have always considered you one of the most positive people in my life. I look forward to giving you foot massages, sparking a doobie and much laughter, tears and more laughter. Squeeze your precious self for me!
Caro Henry e’ molto bello quello che scrivi su MaryAnn,sui tuoi figli ,tua sorella la tua famiglia i tuoi amici ed il mondo che ci circonda .sei un uomo forte ed intelligente ed anche in questo delicato momento riesci a cogliere il bello della vita. Vi abbraccio tutti. Lello
Your laughter and spirit lifts us up. You always amaze me in your willingness to experience new adventures, stretch and meet life head on with a joke or a Yiddish expression or a story told like a comedian . I am honored to have you as friend and love you dearly!
My Dear Friend and Universal Mensch –
From the day you brought me onboard at Genentech (June 20, 2005) through the days rehearsing, and performing with Bay Bridge Beat, I have always admired you, respected you, loved you, and have held the utmost gratitude for the opportunities you afforded me. You changed my life, all for the better. You continue to inspire and I continue to be awed by your awesomeness! Thanks for sharing and I look forward to seeing you F2F very soon!
Harry- it’s been over 10 years since I last saw you and have thought about the many laughs we had during your tenure at Genentech. When you and Heather left, a part of me went with you. This blog and your story is truly aspiring and please keep writing and living your life to the fullest. With deep respect- Laurel (Schachter) Funkhouser.
Hi Harry, I met you and Mary Ann at Robi’s apartment in Rockaway some years back. I had liked you both so much and thought, Robi is so lucky to have you both as friends.
Since, I had heard about your diagnosis, I ask Robi all the time about how you are doing. I am so inspired by your strength and I love hearing the stories about the great people that surround you.
This is Jill, by the way and I’ll enter my email below
Authentic and inspiring. Keep kicking ass and letting the world know about it!
You are a true inspiration and incredibly strong. Thanks for sharing your story and it’s awesome that you are surrounded by so much love.
This is beautiful writing and inspiring. Thank you Harry for your courage, honesty and remarkable spirit. You are an inspiration!!
You continue to be such an amazing person Harry…love to you, Maryanne and your family.
Our lives crossed in Brooklyn…with Robi Nedboy as the bridge that brings people together. Even though we lived there for only 2 years 9 months and 3 days we have always kept up with your travels etc. Barry and Donna were another part of our lives, again thanks to robi, and were instrumental in starting my California educational career. Your blog is most inspirational. Thank you for sharing. Stay strong. Sending love…. Helen and Patrick Bauer