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This month’s article is written not only to honor the memory of a remarkable person but to encourage us to reflect upon, benefit from, and hopefully adopt the positive outlook he demonstrated in the face of an incurable disease. That person was my twin brother Michael who lived with his family in Scottsdale, Arizona.
A Brief History of Michael’s Illness
Almost seven years ago Michael was diagnosed with a rare disease called amyloidosis. I had never heard of amyloidosis prior to his diagnosis and even after he and his wife Shirley described it to me, I went on-line to learn more about this disease. I was dismayed by what I read. It was incurable and associated with a limited life expectancy. There were only a few sites in the United States that offered a treatment protocol. Michael chose the Mayo Clinic in Rochester, Minnesota, not only because of its reputation for excellent care but also because there was a Mayo Hospital near his home that could provide the extensive follow-up treatment he would require.
Before Michael left for Minnesota, my wife Marilyn and I and other family visited him in Arizona. Michael and Shirley’s children and grandchildren live near them, and we all expressed our support and love as he embarked for a treatment program that would last almost two months at the Mayo Clinic. Shirley was at Michael’s side during his entire stay, and each of his children and their families took turns visiting for weeks so that there were always several family members with him. I have no doubt that their presence facilitated his progress.
Michael faced many challenges to his health once he returned to Scottsdale. Different medication trials were used. Progress and setbacks appeared with regularity. Michael never wavered in displaying a determination to live as normal, fulfilling, and healthy a life as possible. Normal was markedly different for Michael than most people, involving constant appointments with different specialists at the Mayo Hospital and a daily regimen of drugs. As one year led to the next, Michael surpassed the life expectancy of many individuals with amyloidosis. He experienced the birth of new grandchildren and spent much time with his family and friends.
Shirley observed that whenever Marilyn and I visited we seemed to catch Michael at his healthiest. Early in his treatment he was experiencing intense pain from several fractures in bones in his back, an apparent side effect of the medications he was taking. Yet, when we arrived a few weeks later his pain had subsided appreciably following an adjustment to his medication. Such was the case during our last trip to Scottsdale in early January. Michael appeared to be doing well. We had a very relaxing, enjoyable time that included going out for dinner and to a movie with Michael and Shirley. One evening all of the children and grandchildren came over. As we were flying back to Boston I commented to Marilyn how nicely Michael seemed to be doing and how upbeat he continued to be. Little did I know the visit in January was to be the last time I would see my twin brother alive.
A Rapid Decline
During the first week of February, Marilyn and I were in south Florida. I had a couple of speaking engagements, and we spent time with my oldest brother Hank as well as other family and friends. While in Florida we received word that Michael was admitted to the hospital because of problems with his heart. His defibrillator and pacemaker were adjusted and he was released. However, a couple of days later the problem re-occurred and he was admitted to ICU. We called every day and on all but one occasion when Michael was very tired, we spoke directly with him.
When we returned to Boston from Florida, we immediately called Michael at the hospital. He answered the phone. His voice sounded weak but, he was happy to have been moved out of ICU into a regular hospital room. I told him I would call again tomorrow. Given his recovery from past hospitalizations I was not expecting the call I received early the next morning from Shirley.
She was crying and said, “We are losing Michael.” I was stunned. Apparently, shortly after I spoke with him the day before, his heart started to give out. He died later that afternoon with Shirley, his two sons, Russell and Ryan, and his daughter Erica by his side. I felt overcome with feelings of sadness and a sense of emptiness. I thought, “For the first time in my life, I no longer have a twin with me. We have all lost a wonderful man.”
I was asked to give one of the eulogies at Michael’s funeral service. On the flight from Boston to Arizona I considered what I wanted to say about my brother in what was a relatively brief amount of time. Almost all of the people who would be in attendance knew Michael only as an adult. I decided to recount stories of Michael’s childhood. We were in every class together until high school. We were finally separated in math because Michael was truly a math genius; in tenth grade not only did he take the usual geometry class, but as a member of the math team (yes, there was a math team competing with other high schools in New York City), he also learned eleventh grade math on his own with some input from the math coach. Michael’s achievements in math were well beyond my abilities in that subject, and I admired what he had accomplished.
In addition to describing events from our youth, I knew that what I most wanted to highlight was Michael’s positive attitude, courage, love, and determination when faced with amyloidosis. I knew that all of the family and friends attending the funeral service were aware of these qualities in Michael, but I wanted to emphasize them as a model of how all of us should strive to lead a life filled with dignity and compassion.
The moving words of the rabbi officiating at the service and two other eulogies preceded mine. I started by noting that when I was born I had three wonderful brothers and that one, Irwin, was killed in his 20s while serving in the Air Force when a terrorist placed a bomb on his cargo plane. In a lighter mood that I knew Michael would have appreciated, I said that I verified with my oldest brother Hank that when he was 12 and Irwin was 9, my mother convinced my father they should “try to have a girl.” Obviously my father agreed to the “trying” part and my mother became pregnant. My parents did not know my mother was carrying twins until Michael emerged. I could only imagine that for the next 70 minutes while waiting for my birth (quite a long period of time between the births of twins!), my mother was probably hoping that the next child would be a Roberta rather than a Robert. Alas, it was not to be. Three pregnancies, four sons!
I enjoyed telling people of how Michael and I loved the Brooklyn Dodgers and how upset we were when they moved to Los Angeles. I remarked how well-liked Michael was by family and friends alike. I also mentioned that one of the benefits of taking the same classes was evident during high school when we alternated working evenings as “soda jerks” in a store owned by our cousins. Except for math, for which we were in different classes, we would do homework for each other in carbon paper (does the younger generation know what carbon paper is?). One day, our Spanish teacher who we knew really liked us, observed, “You two always seem to make the same mistakes on your homework assignments.” Without missing a beat, Michael said, “We’re twins, we think a lot alike.”
I next described how Michael and I met Shirley and Marilyn at almost the same time and that our weddings were only five months apart. We were both blessed to marry such loving wives. I talked about the joy of our families expanding with the birth of our children.
A Model of Resilience
After recalling these childhood events, I shifted to Michael’s struggle with amyloidosis, noting, “Some of you know that I have been very fortunate to write books about resilience. While I may have written the books, my brother lived what I wrote.” I said that one of the hallmarks of resilient people is that when challenging situations arise, they don’t blame the situation or other people and they don’t blame themselves. Instead, they recognize that while they may not have had any control over the emergence of a particular situation (such as Michael developing amyloidosis), what they do have control over is their attitude and response to the situation.
I said in the almost seven years that Michael confronted his disease, I never once heard him utter, “Why me?” He never accepted the role of the victim. He never felt sorry for himself. His attitude was upbeat. He endured his constant doctor appointments and followed his medication regimen with no complaints. Even during our last phone conversation the day before he died, he told me, “I just take life a day at a time.”
In my eulogy I encouraged all of us to honor Michael’s memory by adopting his positive outlook, by not living a life filled with regrets, and by keeping in focus the importance of our connections to our family and friends. To subscribe to the attitude he demonstrated would be a testament to the impact he had on all of us.
Michael’s Own Words: A Confirmation of the Eulogy
A day or two after the funeral, two very dear cousins from Toronto, Todd and Carol Herzog, wrote to share a letter that Michael had sent to them a couple of months before he died. Todd is a two-time survivor of cancer, once as a teenager and once as an adult. His wife Carol is one of the loveliest, most caring people I know. About six months ago their daughter Steph Gilman was diagnosed with breast cancer. I should note that Steph began a blog, passmeanothercupcake.com, to detail her treatment. I would highly recommend that you visit her blog. Steph is an extraordinary writer and her words capture the many emotions associated with her battle with cancer; even when feeling down, she provides humor and hope.
Todd and Carol were not aware of what I had said at Michael’s funeral nor did I know that Michael had sent them a letter. When I read what he had written to them about Steph’s condition, I was in awe. His words were almost the exact words that I had expressed in the eulogy I gave for him. It was as if Michael had been present as I was planning and delivering the eulogy, insuring that I would be precise in explaining his outlook to all those in attendance. This is what Carol wrote to us and others: “I was looking through some old emails and came across this one that Michael sent to us. Our daughter is currently fighting breast cancer and Michael, in the middle of his ordeal, took the time to offer us words of encouragement and love. This is who the man was…selfless and loving. We will miss him very much. Here is his e-mail to us:”
Dear Carol and Todd,
We have followed the plight of Stephanie and your family and would like to take this opportunity to let you know that our thoughts and prayers are with all of you. Todd’s own experiences will serve as an inspiration to all of you in meeting the challenges ahead. The most important aspect in the day-to-day living is the positive attitude. Many people ask, “Why me?” I always asked, “Why not me?” Having fought a rare incurable disease (8 in a 1,000,000 get amyloidosis) for the past 6 1/2 years, I have come to appreciate life from a far different perspective than most people, as I am sure Todd has as well. From Stephanie’s blog, I can see that she too has adopted a great attitude and maintained an incredible sense of humor. I have always said that there are no real problems, only opportunities and challenges and I am sure that you will get through these difficult times. When you do, you will all be stronger and grateful for the support of your wonderful, loving family. You and your family are very dear to us. You always exuded such genuinely positive vibes. We will always keep you in our thoughts. If there is anything else that we can do to ease your burden, please let us know.
As I read Michael’s words to Carol and Todd, it reinforced once more what a wonderful, insightful, compassionate person he was and how much we can all learn from his remarkable attitude. I was blessed to have him as my twin brother and will always have wonderful memories of our times together. While he will be missed, I know that his legacy lives on in the many family and friends whose lives he touched so profoundly. And that is the reason I wanted to share his life with all of you who read my monthly articles.