Category Archives: Writing

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 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….


A meditation for beginnings…

“You don’t need endless time and perfect conditions.  Do it now.  Do it today.  Do it for twenty minutes and watch your heart start beating.” ~Barbara Cher

Since signing up for my own little piece of web space, I had lulled myself back into a state of inertia.  I made no excuses for my inability to get started on my blogging journey.  I know the reasons, they just weren’t really good enough.  They included (but were of course not limited to):  I didn’t know where to start. I had nothing really unique or interesting to offer. What if after such a lengthy “break” from writing, I had lost what ability I did have?…and on, and on, and on.

And then something happened or, some “things” happened.

A good friend of mine from my university days started a food blog.  Check it out!  I’m so proud of her, and I love reading it.  Something about her courage to put herself, and her passion out there has inspired and motivated me.  Thank you lovely!

Around the same time, I started using the public library more.  My mother has always been a huge proponent of the library, but I’ve mostly preferred buying the books I want to read even though I acknowledge that it’ s slightly ridiculous. I’m not the type to reread books, so a $30 hit for something I spend 3 days reading makes less and less sense especially since I have been off of work (more on that later) and more conscious of my spending habits.  Along with my new affection for the library I have discovered an appreciation for short stories.   A book called This Cake is for the Party written by Sarah Selecky has me especially enthralled.   I gobbled it up and found myself thinking about recent events in my life and how they would be interpreted and recounted by Selecky – cautiously optimistic that this new perspective might represent a hint of creativity appearing through my recent mental fog.

Finally, and what ultimately has gotten me to this point dear reader, something clicked.  I was not writing, and thinking about not writing, and berating myself for not writing when something I had read years ago in The Invitation by Oriah Mountain Dreamer occurred to me again.  It just seemed like the perfect way to start this journey.  It was exactly what I needed to understand to get started.  So, here it is.  I hope it might even help you to start something new that’ll get your heart beating again…

A Meditation for Beginnings

Sit or lie down in a comfortable position & bring your attention your breathing, following the breath as it enters & leaves your body, letting your muscles let go with each exhalation.  Do this for a dozen breaths, just following the rising & falling of your body with each breath.

Now, let yourself focus on one thing you want to do that is not currently part of your life.  Let it be something specific & imagine in detail what it would feel like.  It may be meditation or exercising daily, learning something new or doing something creative like dancing, painting, writing or simply being more patient with those you love.  Something that has meaning for you.

See yourself beginning this activity.  Imagine the state of mind, body, and emotions ideally required to begin.  How do you want to be feeling mentally, emotionally, and physically when you start?  Imagine yourself as you ideally want to be to begin.  Stay with this for a few breaths.

Now, be aware, feel the gap, if there is one between where you want to be as you begin living this aspect of your life and where you are.  Perhaps you are more tired, less inspired, less calm, or more distracted than you want to be.  Let your attention follow your inhalation and your exhalation and take a few moments to feel, without judgement, the gap between where you are and where you want to ben -or think you should be- to begin.  Now imagine yourself beginning what you originally wanted to do, starting from the place you are right now.  See yourself doing it.  Let yourself relax into how things are, perhaps not as perfectly, not as ideally as you first imagined it, but doing it anyway.  Let go with each exhalation let yourself feel exactly how you are feeling.  Give yourself permission to begin from here.