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

 I used to joke that the difference between a six minute mile and ten minute mile was thirty years.  In my thirties I regularly ran anywhere from a 5k to a half marathon in the 6 minute/mile range; I was still doing 8 minute/mile 10k’s in my late fifties and in my late sixties,half-marathons in the ten minute range.  Then I got sick to the point where I ended up in a wheelchair. I lost all muscle use in my legs.  With treatment I began to improve and learned to walk again.  I still don’t know if what I now experience are the aches and pains of aging or what is to be expected based on my disease.  

    I do know, I hurt.  I do know I wish people knew who I was before.  My mom used to tell Becky that she wished she knew her before when she aged and found it difficult to move around..  I understand, I do wish I could still be seen pre disease, as someone vibrant, someone who could complete ultra marathons and long distance hikes.  

    As I begin to look normal, with no notable limp, and no accouterments; I have left behind my wheelchairs, my walker, my crutches and most days even my hiking pole. Now I face the opposite from people who know me.  There is an expectation that I am more than I am, that I am the guy who ran all those races and climbed all those mountains.  Now that I walk normally, people don’t realize I am climbing a different mountain, one very real physically, but also very real mentally.  Unless you watched me tackle a technical down or descend a set of stairs, which is achieved only with difficulty, there is no reason to believe I still have hills to climb on the way to recovery.

    Every step I take hurts.  My foot hurts, my knee hurts, my hips hurt and my back hurts in many places.  But I still move; I know in the long run it is still very likely good for me and I simply like the act of moving. No one helps me in this journey; most of the medical profession proved clueless in diagnosing my disease and none understand the recovery process. I only complain to Becky and I look normal so I should be that pre-disease guy that everyone seems to see.

   I dreamed of running again, not in the sense of sitting around thinking about running through a field of flowers but at night, as I slept.  Seven different times! I don’t remember the details but I did remember at the end of the dream I would say that this is real. I’m not dreaming   I worked my way up to walking 12 miles in just under 18 minutes per mile, but I couldn’t run. I would try, but Becky would tell me, as she watched me labor in the effort, that I didn’t have the necessary lift.  My right leg just wouldn’t cooperate as much of it suffered from neuropathy. My right upper leg measured 2 inches smaller in the quad region and my knee felt it lacked any support, so I never really thought that I would run again and it really never concerned me.  I was happy to be walking.   

    But then Prince Edward Island happened.  Becky and I traveled to Canada with the intent of doing the  420 mile Island Walk. Our traveling partners brought along bikes and rode many of the miles we walked. Eventually we found a guy from Houston who moved to the island, bought an old church and rehabbed old bikes.  We bought a couple for 100 Canadian dollars and rode many of the remaining miles until Hurricane Fiona chased us away.  I learned something on the bike.  While I was capable of riding a pretty clip when the path was relatively flat, I really struggled on the long uphills, unable to keep up with the others.  I simply lacked cardiovascular fitness. Because my body was limited speed wise, I could walk  long distances but I was rarely able to tax my breathing or challenge my heart rate.

     In Canada, I began to understand the quandary of not having the strength to develop cardiovascular fitness in the traditional way and when I arrived home, during one of my walks I tried again for the lift I needed to run, and discovered it was finally there.  The bike riding developed just enough elevation in my legs that I could achieve some facsimile of a run.   

So I began to run. It had to look awkward and entertaining, because it sure felt that way.  I was probably running 30% of the time, avoiding the downhills and dips in the road and of course reverting to walking when cars drove by, not wanting to subject the driver to such a spectacle.

I signed  up for the local turkey trot, only having made less than a handful attempts at running.  There would be a small crowd and I had no idea if I would run. But of course I did; too self competitive not to.  It was ugly but I finally cracked  the 15 minute mark.  I was pleased.

My son, Nicholas, ran with me. (Becky ran also.)  We used to run together often before I became sick.  During Thanksgiving dinner, Nick remarked that he was surprised to see he had reached some peak minutes as defined by Fitbit.  I looked at mine and discovered I had 39 peak minutes during the run.  He didn’t think this was possible, relying on his previous knowledge  of me , pre-disease. As I shared the evidence with him, he said he had no idea I was in such bad shape. Nick remembers who I used to be. My physical appearance would generally indicate that I am again that person, and cause others, like my son, to forget the disease that wiped me out.

     Now Becky and I are at Hilton Head, and she sometimes forgets as well because I look again like that guy in the photo who runs ultras.. It is easy to do, as I sometimes forget. As we enjoyed a walk on the beach, I  thought we should walk out to the sandbar. I soon became nervous, so Becky  decided to show me the direction to take.  I began to follow her path.  As soon as the path became obscured, my inclination was to get down on all fours for safety and security.  Since I learned to walk again, I have measured each step to ensure a firm foothold; I never look up, I strive to know where the cracks and dips in the road exist. With my feet underwater,  I could no longer see them, and  it wouldn’t be practical to  move on all fours as  my head would probably be underwater. So I made my way slowly by feel and Becky, recognizing my struggle, walked back to lend me a shoulder to lean on. 

     I enjoyed the moments on the sandbar as the sun was setting and the seagulls shared the moment with us.  We made it back to the beach safely, but it soon became dicey. There is an undulation on Hilton Head shore which fills with water at high tide before rushing back to sea.  We had to cross this piece of water to look closer at what we believed to be a park along the shore.  It was probably 15 feet across with water making its way home.  As Becky walked effortlessly across, I found it was only knee deep.  I watched as she walked easily across the water obstacle.  I began to follow her path. I soon found my footing to be unsure.  The water rushing back to sea had created wave-like patterns under my feet and they were unnerving, so I inched forward and about halfway through I found myself paralyzed with the fear of falling.  My feet were planted parallel, so I had little base of support.  Soon I found the little patterns rushing out beneath my feet. I was still frozen, but I remember my PT telling me that the reason for most falls is the fear of falling.  With my footing deteriorating, I moved forward.  As demonstrated by Becky, someone with average balance would have not even hesitated and would have probably found the act of falling funny.  On reflection, I would guess my moment of struggle probably lasted only a few seconds.  In those seconds, Becky turned and had a half smile on her face that quickly turned to concern as she realized I wasn’t clowning around. What looked like a crossing a 5 year old could have handled, for a split second it became a crevasse in the Sierras we survived several years back.

  On one hand in my vain moments, I want people to know who I was and at the same time appreciate my struggles as I move forward.  The people closest to me struggle with the new me because I try to make things look as effortless as possible. This silent struggle is real.  It doesn’t consume me,  but lends a great deal of empathy to my life. I no longer try to judge others and appreciate that I don’t really know what they are going through, what they endeavored to accomplish the night before. Life is better lived. with understanding and compassion.

 According to medical literature on Google I do not have escalaphobia-  the fear of riding escalators. Escalaphobia is related to bathmophobia- the fear of stairs or slopes, not to be confused with climacophobia, obviously the fear of climbing.  Unlike people suffering from acrophobia, the climacophobic are not afraid of heights, but become fearful when they have to climb.   None of these should be confused with illyngophobia-the fear of vertigo.  I just wanted to understand why I had trouble descending an escalator last week and found myself trapped in Google, descending further and further away from my initial dive into some understanding.  My plunge then became cute, entertainment instead of true understanding. On the site titled ,very well mind (not capitalized),in addition to the aforementioned related phobias, I found headings such as Negative Experiences with Escalators, Escalator Myths Debunked, Escalator Safety and of course, Seeking Treatment. I’m pretty sure battling phobias is hard work, so I’ll skip the jokes, although I imagine phobias might be easy pickings for late night TV. 

     To the point, I don’t have a fear of escalators or any other phobia that I am aware of, but I do have Dermatomyositis (DM), which may sound like a phobia, but is a physical condition in which almost no one has heard of, including most medical people.  In males, it afflicts five out of 1,000,000 people, which might explain why local family doctors might miss it as they glance at their computer screens, trying to capture the correct words to please the insurance companies. (But that is another story).

     I approached my descent at the Barnes and Noble bookstore with little trepidation, but soon found I couldn’t make the first step.  My brain first tried my left foot and then my right and kept going from right to left. Sometimes my foot actually left the ground; sometimes I was unable to begin the lift as my foot wouldn’t leave the ground. With great discomposure ,  I looked around and found no one observing me. As I sit here trying to analyze the true reason why I looked around, it is not clear to me.  Was I simply avoiding creating a logjam, making sure no one was waiting to go for a ride or more likely I didn’t want people to think I was an old man (I am 70) afraid or unable to get on the escalator.

But that’s not it, I have DM.  I need a t-shirt with big letters on the front and a definition on the back to explain this unwanted companion that travels with me.

The back of the shirt would be filled with bullets that would only begin to explain my journey the last few years:

*I was confined to a wheelchair last year

*I lost my ability to walk

* With treatment, I am getting stronger

*I may flair and regress

*I’m not lazy; I ran an ultramarathon just before getting sick

*My balance was severely affected.

*I still don’t know what I can do

*I still don’t know what I can’t do

* I have done my PT; I have the certificate of completion

     I could go on, but back to the escalator.  My brain doesn’t always talk to my body, the way it used to.  I am left with a bum leg that feels as if I have to drag it along wherever I go.  I am still discovering my legs and what I can  and cannot do.  It is a great epiphany to discover something new I am able to accomplish. I celebrated with delight when I could climb my way to the upstairs in my home.  I still approach this effort cautiously, especially coming down.  Each day brings a new reason to celebrate.  

 You would have to observe closely to notice I have a problem and it would have been pretty clear to you if you had been trying to go down the escalator at the bookstore behind me.  In hindsight ,my effort lasted only a few seconds, but it felt like I was tying everyone’s day up.  I did take the step; I don’t remember which leg led, but it does matter in everything I do.  I have to think before I take steps on anything but a flat smooth surface.  My brain has to analyze what is ahead of me like never before.    

Postscript:  I did run into a different set of escalators a few weeks later. After having conquered the previous escalator, I never thought for a moment I wouldn’t be riding down after riding up.  But I couldn’t.  Despite having Becky beside me to lend a shoulder, the mechanics didn’t work out in my brain. I never could analyze a way to take that first step without imagining tumbling headfirst.  No stairs to be found, so I rather humbly road the elevator down one floor.  ( Those of you who are older and follow football will remember a linebacker for the Miami Dolphins, Nick Buoniconti,  He later became an attorney and we worked in the same 17 story building in Miami.  He was never shy about sharing his thoughts on people riding the elevator for one floor. This always stuck with me, which added to my self-inflicted my humility.)

I may never run into another escalator, but it does trouble me that I have that fear now.  Should I just avoid them, use the stairs, practice somehow or simply ride the elevator with my hat in hand?

      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.”