‘Going Away’: A Guest Post
‘I am on the road to transform and become someone or something else.’ A lawyer, writer, activist, and actor, on beginning the journey that follows an Alzheimer's diagnosis.
The post below is from my long-time friend Samuel A. Simon. He is a prominent lawyer, writer, actor, and civic figure. He also has been diagnosed recently with early-stage Alzheimer’s disease, and is reckoning with a future that is likely to lead to dementia.
I first met Sam Simon more than 50 years ago. In the summer of 1970 we were both part of the then-emergent “Nader’s Raiders” movement. He was a young lawyer just out of the University of Texas Law School. He had grown up in El Paso, part of a small Jewish community there. I was just out of college and on my way to graduate school. We have stayed in touch off and on through the years since then.
In 1966 Sam Simon married Susan Kalmans, who grew up in Houston. They have been together ever since. A decade ago Sam Simon wrote a play called The Actual Dance, which was about his and Susan’s experience coping with what appeared to be a terminal diagnosis of breast cancer for her. Both of their mothers had died of the disease.
Fortunately she defied the odds, and has survived and thrived. Sam has performed the play The Actual Dance hundreds of times, and written a book version about their journey together. You can find the book, and more about Sam and Susan and their family, here.
Recently Sam Simon, who is now 76, was diagnosed with early-stage Alzheimer’s. He continues his work, but he has been told to expect a steady cognitive deterioration—barring therapeutic breakthroughs or, as he says below, circumstances that make him an outlier in the disease’s progress.
With Sam’s permission, I am sharing a statement from him about how he is dealing with this diagnosis and prognosis. Many people in his world—and my world, and I assume the world of most visitors to this site—have made their living, and established their identities, based to an important degree on their ability to learn, think, recall, and express. Together these play a large part in how we think of ourselves. All are affected by the disease. Sam Simon, who has written movingly about facing the mortality of a loved one, presents his view about the way he has decided to cope with this part of time’s toll.
I don’t know whether Sam Simon might provide further chronicles or updates. If and as he does, I will present them. I do know that at this point he wants to let his experience be publicly known, as he did Susan’s, in the interest of broader awareness of a widespread challenge.
Here is the essay by Sam Simon, with my thanks for his generosity, and my admiration for his blunt realism. (For the record, I have not changed anything in his statement except a few details of formatting and punctuation.)
My Decision to Choose Life
By Samuel A. Simon
As I reflect now, as a 76-year-old man recently diagnosed with early-stage Alzheimer’s, what comes to mind is how hard it has been throughout my life to make choices when the future was uncertain.
The closest thing to this moment in my life is remembering what it was like raising two teenagers. I had no clue about any of it. We—my wife, Susan, and I—had never done it before. Although it was confusing and challenging, we now have two wonderful adult children with highly successful lives, plus four grandchildren. There were times in that journey when this outcome wasn’t certain.
Now, trying to understand my future through this disease, I am looking around to ascertain what others in a similar situation do, or have done. I am indeed “early-stage,” but the diagnosis is clear. To quote my first neurologist, “You want to know what path you are on? Well, there is only one path, getting worse.”
I say “first” because we immediately sought better advice and more compassionate care. I have since joined several support groups. A shout out to the Cleveland Clinic’s Brain Health Center in Las Vegas, Nevada. It hosts a “Dementia Friendly” initiative that is part of a global movement to make the world more “friendly” to people like me. I meet every week by zoom with others with dementia as well as some caregivers, and we talk, compare our lives and learn from some great people.
Closer to our home in Washington, I have connected with the East Side Institute in New York and Mary Fridley, who has founded a global program called Reimagining Dementia. In addition, I’ve just learned of the Dementia Action Coalition, an advocacy group that works on behalf of those of us with dementia.
Even as I write this, I’m thinking that dementia is just a new chapter in my life as an advocate, which started back in 1970 with Ralph Nader, around the time I met James Fallows. I am provoked today because of what seems to be a growing conversation about life with dementia – and how to approach it as the person with dementia. I am also concerned for my wife, who will be my caregiver. I struggle with my obligation to her as I make my choices.
In just the past few weeks I discovered a wonderful book by the Rev. Lynn Casteel Harper titled On Vanishing, that expresses both the heartache and beauty of the journey through dementia. In the New York Times this past week, Suzanne Finnamore penned a beautiful guest essay describing dementia as a “place” not a “person.” Yes, I get it. I might be “going away.”
Then a few weeks ago, while exercising—my wife of 55 years, Susan, ensures that I exercise every day—I was listening to a podcast of an interview with author Amy Bloom. She has written a book documenting the journey with her husband, Brian, and their decision shortly after his diagnoses with early-stage-Alzheimer’s to “not go to that place.” Together they, Amy and Brian, went through a process that took them to Switzerland, where he voluntarily ended his life. She quotes him as saying, “I don’t want to die, but I don’t want to continue to become a lesser and lesser person.”
Brian’s decision startled me, and I must confess that for a few minutes I had to wonder if I really wanted to take this journey. Should I consider the option of suicide?
I’m grateful for this opportunity to announce my decision and to explain it, in hopes that every other person who is diagnosed with any terminal disease, and especially Alzheimer’s or any other form of dementia, will decide to choose life.
There is no question that the future is scary. I am on the road to transform and become someone or something else.
In moments of existential crisis, of total uncertainty, the only place for me to find guidance is in my faith tradition. I am Jewish and I am commanded to choose life, whatever that may look like.
Second, and as a corollary to that prime directive of choosing life, is the duty to support and promote life. So, as we proceed, and by which, I mean my wife and I, for as a married couple we do this together, if my disease and life can help find a cure for others, and thus save lives, then I am commanded to take that journey. And breaking news, it looks like I’m going to qualify for a study of a new drug designed to slow the development of Tau – the black tangles that form like worms in the brains of Alzheimer patients. The road to cures is built one step at a time, and I choose to be a step toward that end for Alzheimer’s.
Finally, I am inspired by Susan, and what she taught me in her own battle against advanced breast cancer. She was only 54, and the doctors and surgeons anticipated the worst. I learned so much from that difficult journey. I have even written a play and a book about it. I learned so much from that time and era of our lives. Who knew that tragedy could contains gifts? Susan’s determination and battle and unexpected survival from a disease that was believed to be terminal led instead to a vision of living every moment of one’s life to its fullest.
I believe there is always the potential to be the “outlier.” The one person who defies the odds and is the unexpected happy ending. I also believe that even if that is not the case, there are gifts along that road, gifts to medicine and research and even to those you love.
I am not afraid. I am just curious:
It never occurred to me that I might be going away.
The doctor said I might.
I wonder what it will be like.
It has its own allure.
Will the present “I” just evaporate?
Is it a place of great peace or of torment?
Maybe the pain is just in getting there.
The struggle to remember. The mental black holes
Turning the wrong way down the one-way streets.
Maybe I am going away.
I wonder what it will be like.
A new place of the present only. No memory of me now.
Every day a new start.
I wonder if the “I” of me then will know the “I” of me now
Inspiring, creative bravery
For anyone receiving this diagnosis and for the loved ones, please do research on how much is being done about this. The doctors tell us they can solve any disease, but we just are not giving them enough money for research. In other words, the research on this is very advanced. It is a terrifying diagnosis because it is a big unknown unless you have dealt with it in your own family or circle. There are many medical advances about delaying symptoms. Also, family members will be told by doctors, that is " not your mother anymore." This is completely untrue: if you know the person, they are the same and do not change in many ways. They are still there.
In training to be caregivers, we are told that we have to enter into the world of the loved one: we should try to see what they are perceiving. From many of us who have been caregivers for decades, please chart your own path. The experts who are the CNA's and nurses taking care of people directly, will tell you that there is plenty of life, love and laughter left. The trend is to keep patients in the home: unlike previous beliefs, it is known that an alz patient will remember the familiar layout of the home and be much better.
And there are wonderful, compassionate helpers or residences, all specially trained and designed for comfort, if the caregiver cannot be there.
At age 67 (me) or age 76, we are going to get very difficult diagnoses. If we stopped war and put all of our resources into medicine and research, it is only a matter of time before all gene mysteries are solved so that we will not have serious diseases. In the 1960's, we believed that we could have peace so why should we give up on the dream of worldwide peace? Humans are not that limited, it will happen.
It is a difficult diagnosis. A caregiver knows that it is a very slow process and it can be slowed by many many things. There is new research on preventing more plaque and reversing it. Have a lot of hope because there are many good days still to come, it is just different that is all, when you enter into that world that our loved one is in.
A son of a doctor knows that the human body is incredible, that it can self-heal in many ways. The path of the patient from here should be a loving one, adjusted to the person's needs. Enter into their world and it is fantastic in many ways. It is not all loss by any means. It is more a chance for intimacy, compassion, sharing, and exploring how we all age, we are all vulnerable. For the loved one, they are not necessarily aware of what is happening so they do not have anxiety about it. Support medical research and end the wars that use all the resources we have on the planet, that could be used to solve these human problems. https://www.alz.org/research