You should be writing this down (and other advice I didn’t take)

I started working at Drugs R’ Us during my third year of university.  I got the job, because an old roommate who worked there first had moved on to bigger and better things.  I was jealous of her connections and good fortune, but none the less thrilled that I could leave the job I was working in watch repair for a major department store where my bosses were traditional middle eastern men, engineers in their home country, and not too happy about working retail in this one (with a girl).  They were kind, but from a very different culture, and in their late 40s.

Housed beneath a downtown office tower and attached to a hotel, Drugs R’ Us had a daily clientele that included 30somethings in power suits with trust funds, bureaucrats who killed time at their desks between breaks, tourists and business travellers from all over (but usually the US), the hotel’s perfectly coiffed in-house prostitute who came in every.single.day to buy the jumbo box of condoms, and homeless men and women who stumbled in and tried to drink the Listerine in aisle 3.

Being 22, and age-appropriately self-involved, I spent WAY too much time complaining about a perfectly acceptable form of employment for a student.  I would tell anyone, I mean ANYONE who would listen, about Drugs R’ Us.  I talked about (in no particular order): my coworkers – women in their 30s, who spent hours when the magazine orders came in, drooling over the Playgirls, the boss and his expectation that I (guffaw) work, the clientele who I was forced to serve with a smile, no matter how they looked, smelled, or acted.  I talked about who came in and told me their life story 10 min before close, who was stealing what, who came to work still drunk, or high, who had sex in the store room, who arrived late and left early…blah blah blah.

I was angry.  Here I was getting my “fancy” university education, a chronic over-achiever from a small-ish city being “forced” to put my brain on pause to work retail.  I did not live entirely in the real world.

During this period, I affectionately call my quarter life crisis; people close to me were treated to sarcastic, often hilarious soliloquies about my day, my week, my month, and my poor, overprivileged middle class plight.

“You should write this down, people won’t believe it,” friends and family told me.  This was before the advent of Kitchen Confidential, and Reality TV.  But as most 22 year olds do, I did not write any of it down.  I was busy stressing out about needing job experience, to get job experience, about keeping a man, about whether I looked better with bangs.

3 years later I had my degree but I was also losing the ability to feel my fingers, climb stairs, or stay up past 7 pm most nights.  I was still stressing out about needing job experience, to get job experience, about keeping (the same) man, and about whether I looked better with bangs.  “Maybe I should refer you to a neurologist” said my doctor. “I’m fine, it’s probably just a pinched nerve” I replied.  “Let’s do it anyway” she insisted.  Good call doc.

A year later with a diagnosis of Charcot-Marie-Tooth, I was back in my home town.  Unable to walk unassisted, cut my food or sometimes walk to the bathroom.  (The man was gone by the way).  I was no longer stressed about my hair – I was now stressed about being 25 with a permanent disability, about walking with a walker, about gaining 40 pounds because of meds, about having strangers speak slowly to me because of the way that I looked physically, about what the rest of my life could possibly look like.

Again, I was angry. Again, the people I love and who love me got to hear my bitter sarcastic diatribes against the world.  They say when something really unlucky happens that you can either laugh or cry.  Well I chose to laugh.  And they laughed with me.  We laughed about the walker, we laughed about my falls, in the hall, in the bathroom, in the kitchen.  We laughed about the doctors and their physician speak, we laughed about the crazy witch doctors we were investing time, hope, and money into. We laughed about all the terrifying and negative things that were happening to me, and by extension of their love, them.  We found the humour (dark and light), in every situation.  Sometimes, it was after a really good meltdown, but mostly it was just as we tried to navigate a new way of living.

At the time, my mother championed the “you should write this down” movement. She tried to convince me that someday, I would want to remember those moments, remember how I got through them.  I doubted it, highly.  At the time, I wanted nothing more than to forget about everything that was happening.

Another year later, I had FINALLY been diagnosed with CIDP, and was FINALLY being treated appropriately.  I was regaining my health, and my independence.  We were all starting to embrace the idea that I might live an (almost) “normal” life.  I felt like I had been given a gift by the universe, and now I had to get out there and appreciate it.  So I did. I moved back Ottawa, got a job, found a boyfriend and lived on my own.  But I was different.  My experience had changed me.  Everything looked different.

“You should write it down,” I heard again.  From everyone this time!  My Mom, friends, co-workers, people in doctor’s offices, my therapist, every time I spoke about my experience in any length, someone would say I should be writing it down.  But of course, I didn’t.  I felt I had nothing to contribute.  Lots of books, blogs, articles, etc. were written on chronic illness.  What could I have to say that needed to be heard?

And that’s how it’s gone on for the past few years, until now.  Recently, I started to remember how I felt in the throes of my illness.  How I had searched and searched for anyone who had been through what I had.  For anybody who had made it through to the other side – anybody healthy, well adjusted, and happy.  And the pickings were slim.

Mom and I have often discussed why the internet is a bad place to be when you can’t sleep, are sick, and/or feeling sorry for yourself.  Often times what you find when you search the interweb are the people who are also awake, sick and/or feeling sorry for themselves.  People who share a similar illness narrative commiserate, and those who are doing well, aren’t around, because they’re out living life.   This is of course a generalization, and I am by no means slamming support however it is found. I wish only to explain MY experience.  People counselled me not to do it.  But I did anyway.  And I never, ever felt better for it.

With this in mind, I’ve started to turn over the idea that there might in fact be some room in the discussion for someone like me.  Someone with an illness narrative that might help another who’s 25, 35, or 60, using a walker and wondering what the hell happened to their life. Someone who’s got a real, honest, but infinitely optimistic point of view about life with a chronic illness, and more specifically life with CIDP. So here I am.  I’m taking the advice, I’m writing things down….

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