The High Stakes Of Being Sick

I recently watched an amazing documentary called “Meru.”  The film depicts the years-long journey of three professional mountain climbers to successfully scale Mount Meru.  Athletes Jimmy Chin, Conrad Anker and Renan Ozturk, the climbers featured in the film, take death-defying risks with every trek. It’s unavoidable.  As teammates, they literally – hold each other’s lives in their hands.  If you don’t trust the folks you’re scaling sheer surfaces with, you’re probably in the wrong line of work. Careful, slow and deliberate, each step they take gets them closer to the nirvana that is the peak.  In this case, the tip of the “Shark’s Fin” on Meru.  I’d never want to take the experience of watching this film away from anyone, so I’ll just vigorously recommend seeing it. It is exhilarating and terrifying in equal doses, sometimes overlapping.  But so worth it!

Early in our marriage, my husband and I went to Bear Mountain, in upstate NY, with my brother and his girlfriend (now amazing wife!). They were in college and wanted to hike. Let me preface this story by saying that I had absolutely NO business thinking I could traipse through the woods (or up a hill, let alone mountain), that day.  And this was pre-medical saga.  There we were, four young and foolish kids, enjoying the day.  It was great until it was time to head back down the mountain.  

My brother decided to pick a different route for our return trip, something more adventurous. Before we could really stop him, he was through the trees and on his way.  During our ascent, I admit we spent more time on the road than on legit forest paths, but it was easier.  The descent he chose for us boasted sliding down sheer rock face on multiple occasions.  Of course I went into “We’re going to die” mode.  The more I panicked, the funnier it had to have been for my companions.  (It’s still a source of laughter).  But my husband stayed calm, as he has always done, and spent the bulk of the journey walking backward so that I could feel safe.  He held my hands and gently reminded me – repeatedly – that we were safe, that it would all be ok.  I prayed out loud, was hysterical and ridiculous, but he never wavered in his support. That’s how it’s been for nearly 23 years.   

Anyone diagnosed with a chronic illness, plays the high-stakes game of being sick. You have no other option in the matter. Truthfully, the same can be said of any time you need medical attention. We trust the healthcare community because we have no choice.    

When you’re at a doctor’s office every other week or month, you may develop a rapport with the folks who work there. Since my RSD diagnosis, I’ve cultivated friendly relationships with the staff at my pain management doc’s office.  They know my husband, always ask about my daughter.  We talk about their kids, vacations – life.  It’s been that way for more than a decade. I trust them because they are the people I’ve seen every 4-6 weeks for years.  They take care of paperwork, make appointments for me, take care of prescriptions.  I’ve witnessed many a patient at the office for the first time and am reminded of my early days in this practice.  It wasn’t pretty.  

When I dragged myself in on that first day, the office was located in “the dungeon” of the hospital.  Basically the creepy basement.  It always makes the staff laugh when I remind them of those days.  No one liked going there.  It was cramped and dingy. But that did not reflect the quality of the people working there.  My original doctor saved my life in that office.  He got me walking again. Believed that my pain was real.   Treated me like a human being.  Those might seem like basic things.  You’d be surprised at how often patients in pain are meant to feel like criminals and liars. Just look at the current debate about medications and pain management. It’s disgusting.  

Anyway, they took me on and never left me hanging.  Through countless experimental treatments, procedures and prescription changes, the doc never lost the goal of decreasing my pain and getting me to function well.  I trusted him.  I had to.  

As soon as I was injured, I joined the high-stakes game of medicine.  Actually, I was a different sort of participant when I was a practicing RN.  Things flipped around on me after the injury, that’s for sure.  The first doctor I saw, for my foot, didn’t believe the pain could possibly be as bad as I said it was.  He dumped me off on a surgeon.  The surgeon said that the nerves in my foot were so compressed and damaged, he wasn’t sure what my long-term situation would be as far as walking well was concerned.  He was the first to say I had a rare and poorly understood disease called reflex sympathetic dystrophy.  That’s what caused the pain to radiate from my foot to my knee.  Then it eventually caused the nerves in my dominant hand to hurt, spreading up my arm.  Later,  my back, face and most of my right side joined the party.  See, once nerves start to misfire in one part of the body, it isn’t long before others may start to get confused as well. I trusted because I was backed into a corner. Incapacitated by pain and immobility, I was compelled to leave my nursing job.  At home, I had a toddler. I had to trust because I needed someone to tell ME that it was all going to be alright. No one was saying anything like that. My husband and I needed good news, or at the very least some hope.  I got that from my pain management doctor.  

I’ve been lucky.  Too many patients either can’t find good care or get the meds needed.  Often, they have to deal with everything on their own.  At the mercy of the healthcare system, we have to trust, have to find someone to have our back in such a crisis.  We all need that person, climbing ahead of us, who ultimately protects us from catastrophe. Not unlike the professional climbers I mentioned earlier, we are led up the “mountain of medicine” and hope that whoever’s securing the ropes will do a good job.  Our very lives depend on it.  Mine certainly did.   

Check out “Meru,” you won’t regret it. 

Peace and painlessness, 

Beck 

#Meru, #JimmyChin, #RSD, #CRPS

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2 comments

  1. theinvisiblewarrior

    Beautiful post!! We are backed in the corner many times and have tore lay on the dr’s to help us out! I work hard to build those relationships with my clinic bc I need them view me as a person and not a potential “addict” bc of recent hype on the news. Will continue to follow your writing & it’s nice to meet another CRPS warrior!!! Hugs- kelly

    Liked by 1 person

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