Musings of an Old Guy with an Unwanted Companion in a 140 Year Old House

      I was robbed!  I never had the chance to gracefully age and begin to embrace my golden years.  Despite living a lifestyle full of fitness, exercise and healthy eating habits, I have been besieged with a scrum of health concerns: high blood pressure, hyperthyroidism, atrial fibrillation, an aortic aneurysm, low HDL and pre-diabetes. I studied these conditions, learned, adapted and moved forward. With each new diagnosis, I suffered some angst, especially with the findings of an aneurysm but never cried foul, or allowed that it would prevent me from living life robustly. 

As I battled these conditions, albeit not processing going gently into the night, I lost the right to reflect.  The incidents preceding my loss of rights go something like this. During a conversation with a friend, the topic became a 24 hour ultra-marathon, and the discussion evolved into, “I’ll do it if you do it.” Weeks of training ensued with my logging up to 60 miles a week.  In September, I found myself running laps around an abandoned golf course for a total of 42 miles.  In October, I began experiencing symptoms of a yet unknown condition. After an exhausting number of doctor visits, probing, and examining the search for answers came to fruition in February 2022  with a diagnosis of  dermatomyositis (DM) .  The condition worsened to the point where I was unable to stand unaided and required  outside caregivers when my wife left the house. I digressed from hiking poles, to crutches, to a walker and finally to a wheelchair.

A year later, I have surrendered the toilet adapter and all means of aided transport, except for my hiking poles which I use on uneven terrain.  I am left with a numb leg, a weak knee and the inability to do the lift needed to run, but I am able to walk double digits in miles, although these miles take up a greater part of my day. I have relearned  how to ride a bike. In addition to losing most use of my large muscles,  my coordination and balance are having to be slowly regained.  Having fallen several times during the height of this disease slowed this recovery.   

I was able to find some help in my recovery, but this disease affects less than ten people out of a million, so much is unknown.  As a runner, I knew to listen to my body, what aches and pains to run through and what discomforts I knew called for some type of hiatus.  While the DM is always with me, I feel like I can see the light at the end of the tunnel.  It’s a long damn tunnel and I don’t expect to fully escape the darkness , but I am thankful for the recovery. 

 Unable to reflect on aging gracefully as the result of having such a chance stolen from me, I now search for some meaning in my journey and the many things that I have missed. I have arrived at this place with an unwanted companion and I am finally awakening to an awareness of where I am and beginning to understand  what opportunities are again opening to me. 

 Reading an essay written by Barry Lopez, which he called “Deterioration”, I realized I wasn’t granted the opportunity to reflect on my own aging.  Lopez is a writer best known for books on natural history and the environment and shares my passion in these areas. My fitness level and dedication to healthy living prior to the onset of my dermatomyositis  made me younger than my years, but the disease created a rapid aging that was far from gradual.  I had  little time to form an opinion or prepare for what the aging process would look like for me.  Lopez looks to the past and no longer has the ability to do those things he has always done-lacking the ability and endurance he once had.   His downward spiral was more gradual.  With my condition rapidly deteriorating, we had to educate ourselves and adapt quickly, no time to reflect on the joyfulness of aging.

I  have often used the word stolen to highlight that there was something missing.  Having reached the age of seventy, in my life it never before occurred to me when bad things transpired, that something was stolen from me.  Even at my lowest point health wise, I always believed deliverance was on the way.  I never thought, “why did this happen to me?” and I never believed I wouldn’t pull out of the hole I found myself in just a few years back.  There was no temptation to despair, no disaffection. Reading Lopez’s essay led to my thoughts of being robbed of my chance to choose how I had once perceived aging gracefully.

I must own up to the tears that often flowed after a day long infusion, of being pumped full of bits of plasma from thousands of other giving humans. I don’t  know the source of this release.  Unable to travel sitting, these tears flowed silently while I laid in the backseat with the window shaded, protected from the sun, poisonous to someone with this aberrant condition in which I found myself traveling.

Perhaps it was the indignity of being unable to make my way to a bathroom on the road, having to piss into a urinal, as people, as normal as we make each other to be, buzzed by, unaware of the bizarre scene taking place a few feet across the centerline. I soon graduated to opening the door on the side of the road pissing in the open air leaning against the car seat.  But the tears continued to flow, probably for a multitude of reasons evolving into a liberating, full shoulder tremor before it was over.  Was it being liberated from the infusion’s  tubing, all the new medication or the disease itself that caused this flood of tears?

While Lopez ponders on how he has to adapt to fifty years of splitting and hauling wood to heat his and his friend’s home, mine is a different story.  Where he is able to point to the new care he takes in the process lacking the agility and nimbleness to avoid a rogue log, I have to learn how to adapt to new bathroom procedures. Lopez considers  what makes him tired and having to call it quits earlier in the day and his surprise at the extra mile or hour he can call on to walk further or split a few logs. I celebrate each ability I recover, each climb I can make, each piece of clothing I can put on by myself.  I no longer know this body and it takes continued trial and error and adapting as I move toward the light at the end of the tunnel.

Lopez is no longer with us, but I imagine as he hit seventy, watching the sun fall over his piece of paradise in the mountains surrounding his home, words ran rapidly through his head as he tried to make sense of it all.  He or someone titled his last book of essays, Embrace Fearlessly the Burning World (He wasn’t happy with the condition he was leaving the world).

I’m also not happy with how the world is turning now, but it’s not my purpose to tackle that here.  Instead of looking backwards, what I’m missing here is the ability to figure out how to move forward.  I reflect on reflecting, but it gets me nowhere.  I am driven to move and those porch sitting moments with conversation and wine have to wait.  The reflection is just tangled up as I try to prove to myself that I am capable. I’m determined to get things done, to improve my lot and to challenge myself. It’s tangled up in the disease, the drugs treating the disease, and aging.  There is no separating aging from my condition allowing me to reflect on the “dying of the light.”