Parkinson’s: The Loss of a Friend

“I would rather die a meaningful death than to live a meaningless life.” Corazon Aquino

“What we have once enjoyed we can never lose. All that we love deeply becomes a part of us.” Helen Keller

Sadness: The title was one word, “Sadness,” and the note was brief. My friend, a fellow Person-with-Parkinson’s (PwP), passed away suddenly last week. His name was John Mauer, Ph.D., and his wife and Care Partner, Laura Mauer, wrote the note.

I had recently spent a few hours with John and Laura on Hilton Head Island (they were in town for a wedding that weekend, and John had suggested, if I had time, to meet and greet one another). I said yes, it was a grand idea. Bluffton to Hilton Head Island is only 14 miles, so we met on a glorious December afternoon on a Saturday. Unfortunately, Susan had another commitment and could not come with me.

John was an ardent follower of this blog. He would frequently write to acknowledge a recent post and delve into the science of why something was happening. John was a physicist by training and education. After writing the blog post about the possibility that Parkinson’s was an autoimmune syndrome, he wrote back with great interest. He was going to learn immunology. And, of course, it reminded me of two stories dealing with basic scientists (e.g., chemists and physicists) and biomedical/biological science.

“Death is like a mirror in which the true meaning of life is reflected.” Sogyal Rinpoche

Two Stories: First, many years ago, we submitted a group grant to the NIH together, and it was the hematology types (including me) along with several notable physical, organic, and inorganic chemists. After a few weeks of trying to get them to understand the science of blood clots, one (a physical biochemist with incredible intelligence) of them told me it was just so complicated. And I thought, here’s one of the world’s most brilliant scientists, and what I study is too complex for her to comprehend.

Second, I had the great fortune to help train over 60 undergraduates in my academic career; they were almost always biology or chemistry majors. The chemistry majors had so much depth and knowledge about the details of atoms and such that the biology of my science was just too hard initially to comprehend. The biology students came in with a more substantial breadth of knowledge; thus, the complexity of biological chemistry was less troubling at first. Different curves of advancement in their research eventually evened out. They both did a fine job in their research in the laboratory.

But let me get back to Dr. Mauer.

“Love knows no difference between life and death
The one who gives you a reason to live is also the one who takes your breath away” Mirza Asadullah Khan Ghalib

The Remarkable Life of Dr. John Mauer: When people talk about someone’s academic pedigree, they attempt to understand the growth and significance of someone’s degree. John had degrees from two of the world’s finest institutions. First, he was trained in Physics with a B.S. from the Massachusetts Institute of Technology (MIT) in 1967. From MIT, he matriculated to Yale University and earned his Ph.D. in Atomic and Molecular Physics in 1972. He then did a postdoctoral fellowship at the “Joint Institute for Laboratory Astrophysics”  (JILA). Following this academic training, he went to work at IBM Research for 20 years before starting his own business in statistical consulting.

John and his wife Laura loved to play golf, so when they retired, they moved to Pinehurst, NC. John received his diagnosis of Parkinson’s in 2015. When we met on Hilton Head Island, John talked about his left side being almost frozen, and sadly, he could not play golf anymore. But, through a lot of effort and help from Laura, John was kept on a rigorous schedule to reduce stress, get rest, exercise, and eat properly, and he was managing his Parkinson’s. I was most impressed with John; I was equally impressed with Laura, tackling his Parkinson’s as a team and learning to live as well as they could under the circumstances.

John and I bonded immediately. We talked about our love of science, the paths of our science careers, playing golf, our interest in Parkinson’s, and our love of our sports cars (my Porsche Cayman and his Mazda Miata). It was as if John and I had known one another for many years, not just a few hours.

There is no need to remind anyone that Parkinson’s is an evil entity, and we should all double up our efforts to defeat this despicable disorder. I left our meeting in Hilton Head Island knowing that John had a keen and piercing intellect; he was also a kind soul with expressive eyes that smiled brightly. I only knew him barely, but I looked forward to more conversations about Parkinson’s, life, and golf. Then I got the news of his untimely passing.

“A long disease seems to be a halting place between life and death, that death itself may be a comfort to those who die and to those who are left behind.” Jean de la Bruyere

A Closing Comment: Life comes and goes and can go by even quicker as we age. We all have friends like Dr. John Mauer. Now is the time to say thanks to them for their friendship. Now is the time to remind them of something funny that you shared. Now is the time to tell them you miss seeing them, but you wish the best for them until you see one another again, hopefully soon.

Rest in peace, John Mauer.

“There will be no one like us when we are gone, but then there is no one like anyone else, ever. When people die, they cannot be replaced. They leave holes that cannot be filled, for it is the fate – the genetic and neural fate – of every human being to be a unique individual, to find his own path, to live his own life, to die his own death.” Oliver Sacks

Cover Photo Image by 791101 from Pixabay