cerebellum blues

"Life changes and throws you curves, asks you to live for better or for worse"

Me, a patient? You must have the wrong guy.

 

This post is my little contribution to something called a blog carnival. Not sure how to define a blog carnival, but no matter, I'm doin' it anyway! This particular blog carnival is called Patients for a Moment, and I was told about it by Sara Nash, who writes the effervescent and brilliant Single Gal's Guide To RA.

I did not think of myself as a patient as the paramedics struggled to haul me down the stairs of my apartment building.

I did not think of myself as a patient as I was wheeled into the hospital on a gurney.

I did not think of myself as a patient as a large group of doctors and nurses surrounded me.

The next day, I still did not think of myself as a patient, even as I looked around my hospital room and spotted the chair that Catherine had made into a makeshift bed for herself. Tests had been completed, miracle drugs had been administered and a diagnosis had been reached: severe traumatic brain injury caused by a fall in the bathroom. More specifically, a subdural hematoma on my cerebellum. Interesting, but when I do I go home, doc?

Later that day, or maybe the next — it’s hard to say, as I was sleeping so much and no matter when I awoke the room seemed brightly lit — I was asking one of the doctors if I’d be able to go skiing in few weeks. I had a trip planned that I did not want to miss. In hindsight, the doctor must have been doing all he to could to squelch his laughter as he proclaimed how I’d be schussing moguls no problem, but still, his encouraging words motivated me to finally try to hoist myself from my hospital bed and make it to the toilet on my own.

But it was a toilet too far.

After holding out for as long as I possibly could, I broke down, and, well, no need to go into detail. Still, I did not think of myself as a patient, and I sure as hell did not want to be a patient. I had plans, a life, a job, a ski trip! Immediate circumstances aside, there was stuff that just could not wait.

But it could.

I was finally allowed to leave the hospital six days after being admitted. They rolled me out in a wheel chair, my parents drove me and Catherine back home, everyone helped me up the stairs to the apartment Catherine and I shared, and I, after spending so much time in bed, promptly went straight back to bed. 

In the ensuing days, weeks, months and now years, there have been countless doctor visits, session after session of physical therapy, way too many lost days, canceled trips, early departures from events, high hopes for new treatments, deep lows from when the treatments did not deliver, migraine after migraine after migraine after migraine, well-meaning strangers asking me if I was okay, if they should call an ambulance, if I needed anything, and yet, and yet…

I still have never though of myself as a patient. Can’t do it. I mean, the very word is defined as “someone who bears pains or trials calmly or without complaint”. Yeah, that’s not exactly me. I complain plenty, and honestly, I think it’s natural to be reluctant to accept a cratering of one’s health.

No, here’s what I truly think: I think we need a new word, one that means something totally different from this drivel about bearing pains in quiet. I mean, who wants to do that? No one, that’s who. How about a word that means “someone who can accept help from others without feeling like crap about it”? Because in the early days, if there was one thing that truly kept me from calling myself a patient, it was how being in constant need of help from others made me feel about myself. I was only in my mid-forties for christsakes! I saw it all as pity. But it’s not pity. People want to help other people, I believe that now. And while I might never accept that I have been or ever will be a patient, I have come to accept that sometimes I need help. And I am deeply, deeply grateful that others are willing to give it to me.

Just don’t call me a patient. Please!