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.