October 28, 2022. At Burgos, Spain.
Dear Christine. A few days ago I told you I had decided. You ask how, and why while I was walking across Portugal and Spain. Your question took me by surprise and I’m not satisfied with the quick answer that I gave. The question has occupied my thoughts these last few days because we both deserve a thoughtful reply.
“It” has haunted and stalked me since grade school. Until playmates begin pointing it out, I gave it no mind, I was being like my mother. My dad said we both just worried too much.
In high school I was too young to legally drink alcohol, but that didn’t stop me. Friends found it curious that after a beer or two “it” temporarily disappeared. I since learned that this is a common trait.
Aptitude tests in college and my own interests pointed me in the direction of a career in medicine, but that was certainly out of the question. Instead I became a lawyer.
It was always able to adapt. Two hands to put a key in a lock, tall beverage glasses half full or lids on coffee cups, instead of hammers and nails it was cordless drills and screws. A really good legal assistant and voice-to-text typing proved invaluable.
“It” didn’t stop me from bicycling across the United States when I was 58, or hiking with you across Spain when I was 61 and then across Portugal when I was 66. It didn’t stop me from sailing, traveling, or pursuing the things that have enriched our lives with our children and grandchildren.
This last month has been different. I am again hiking Portugal and Spain, but this time without you. “It” has become progressively worse the last few years, but the assistance that you give me each day has quietly taken up the slack in a way that I had not fully appreciated.
In your absence I see my limitations every time I look at a menu. Where I sit in a restaurant matters, as does the question of table service versus self service. Completing information forms at the airport or hotel necessitates humility on my part and assistance from others. While I am beyond being embarrassed, I am not beyond confronting reality and the future.
I hinted at this in my earlier essay, “Alone and Invisible“:
“…I also read from the script of the the possible future. We have shared over 48 years together, 45 of them as husband and wife. It is exceedingly rare that spouses draw their last breaths together. More common is the outcome visioned in the vows which begin the journey of marriage, “…until death do we part.” It was thus with my mother living alone for 11 years after dad died, and the same for your dad living 9 years without your mom. It is likely that one of us will have to embrace “alone” as a way of life.”
My mantra has always been, “Don’t put off until tomorrow the things you may then find you are unable to do.“ At 70 years old I am mindful that circumstances could arise at any time to deprive me of this decision.
So, assuming the neurologists and neurosurgeons still agree, I have decided to undergo bilateral Deep Brain Stimulation surgery (“DBS”) to treat my Essential Tremors. I have chosen this over the newer Focused Ultrasound therapy (“FUS”) because it is reversible, and can be done bilaterally. While both treatments report over 90% rates of patient satisfaction and safety, DBS has a proven track record of long term efficacy. I have weighed these factors against the usual risks of surgery and my understandable aversion to having holes drilled in my skull and implants placed in the center of my brain.
All that having been said, you are still a part of this decision and I invite your thoughts when we rejoin each other next week in Barcelona.
PS. Those of you other than my wife may wonder why I am being so public about this. It is because this condition has been “public“ my entire life. It is not something I have ever been able to hide. ET is the most prevalent neurological motion disorder in the world. ET directly affects the lives of nearly 1 and 50 people. It also impacts the lives of loved ones like my wife. Fortunately, for most it is merely annoying. Unfortunately, for many like me it becomes progressive in later years and significantly impacts the quality of life.
If you would like to learn more about Essential Tremors this link will provide a good start to your inquiry: National Institute of Neurological Disorders