Friday, March 1, 2013

Getting comfortable in the box

Six years ago this past February I was put into yet another box.  I had been put into many boxes before that time and will continue to be.  Boxes help people sort you out.  It's a thing.  Because of my early traumatic experiences with being put into boxes (broken home then broken marriage) I think I am averse to them and try to limit my own boxing of people.

It's actually kind of amazing when you manage not to do this 'boxing' or pre-judging of people. Humans are surprising. Including myself.

The box I was thrown into happened at a major turning point in the life of the modern day human in the so-called developed world.  It happened a couple of months before my 40th birthday.

This pre-40th birthday box is something I struggle with. I've blogged here about it and in fact this box is responsible for me reactivating this blog.  The box is labelled Multiple Sclerosis and it is still just as uncomfortable as it was six years ago when I was first thrown into it.

When I first received the diagnosis I reached out to the society for people with this disease. I found out that their purpose was to streamline the delivery of the medications. I was put in touch with friends of friends that had MS. All of them were on an assortment of medications that I had also started to accumulate:  various muscle relaxants and painkillers. One young man was on sixteen different types of pills with half of them prescribed to counteract the effects of the other half.

This scared me into rustling around the academic journals I had access to where I learned that the pharmacy industry invented the term 'disease modifying medication' in order to be able to sell a whole new line of very expensive drugs that, when tested on rats, showed that they might stop progression.  The notion of what exactly progression is was also quite spurious in the medical literature.  Astoundingly, lesion damage and progression was fully acknowledged to be an area that was not understood, at all. One series of articles identified that the placebo effect was remarkably high in nearly each and every study of MS 'treatments'.

So, I climbed out of the box that my doctors were putting me in and climbed into a new box. Yes, I have MS but no, I am not doing it your way.  I follow a very rigid diet that has substantial amounts of research that makes sense to me. My lesions went down, my neuro was impressed. That's enough for me.

Except, when it's not. This week has been a painful reminder that I need to take care of some of the realities this box contains for me. I spend much of the time forgetting that I'm in this box. I feel very fortunate in that. But it's always there and my acceptance of this is taking a very long time coming. I am loath to spend time discussing this box and now see that perhaps this is not the healthiest approach. It's time to perhaps decorate this box and get comfortable and reach out to others in a similar box. It's not going away.


  1. Well said. Acceptance takes a long time in coming sometimes.
    I struggle with it myself.
    I love the cartoon, the truth in humour...

  2. I prefer anger. Rage against Male-Practice, do not smile, chuckle and tolerate their institutionalized misogyny. I do NOT accept, and with rare exception do not allow their sanctioned women-hate disguised as medical care into my life, in spite of the dire warnings I've been given if I don't X, the only real harm I've had to endure came from them.


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