Sunday, March 29, 2009

Disability and What You Should Know

This is a post I really did not want to write.   As a blogger and freelance writer, I have tried to have a shield between my personal life and the work I do.  I had really hoped to be given the benefit of the doubt but it is clear that is not to be the case. 

What you don’t know is that I have two chronic illnesses along with benign essential tremors.  I was diagnosed in July of 2007 with Sarcoidosis and Fibromyalgia in August of 2008.  Both of these diseases are extremely debilitating and have forced me to radically alter the way in which I live my life.

This has been an emotional journey for me.  Much of what I took for granted as a simple everyday activity is no longer possible.  I used to love to go on hikes with my children but now find that I am too winded, in pain, or exhausted to walk a few city blocks.   I used to love to cook elaborate meals for my family but now struggle to feed them simple things because standing for a long period of time can be excruciating.  My oldest son and I used to dance constantly and now I cannot make it through a complete song with him.  When the pain of sitting up at the desk top to write this blog became too much for me to handle, the unhusband purchased me a laptop, so that I could lie on my back and continue to work. Though the unhusband is more than supportive, he is afraid to even hold my hand some days because touch can be a very painful thing to me.  

To all of you who want to know why I don’t write about disability, it is because it is personal.   When I finally had to admit out loud 1 month ago that I no longer hope for a remission and had to own the status of a differently abled person, it put me into a depression.  For the sake of my family and their need to believe that everything is okay even when it isn’t, I forged onwards with an every ready smile despite the hurt and the pain. 

I think that what bothers me the most is that people assume that because I am not dealing with something that it is because I don’t care.  Never once did anyone for a moment consider that it might just hurt me too much to delve into it  in such a public space, that has not always been as safe as it should be.  Never once did someone believe that perhaps it was out of a sense of self preservation. No, it’s Renee must lay it all on the line.

I think what pisses me off as well is looking around the blogosphere and seeing how seldom these same charges are laid at the feet of other bloggers.  The critique of my voice is continual and it is very often harsh.  There are days that I cannot even read the e-mail that is sent because it would be to damaging to my soul.  When it is not of a critical nature, it is often demanding that I cover a certain item, or showing displeasure because I chose to focus on an issue.  I am one person doing the best I can to raise awareness to issues that people seldom talk critically about. 

It takes hours of my time to write, edit, and moderate this blog.  In between I am taking pain pills, sitting on heating pads, reigning in my children, struggling to cook and writing freelance articles for publication.  There are days when the pain pills so cloud my thoughts it is extremely difficult to write coherently and what I write becomes filled with small grammatical mistakes or odd phrasing. Even when people use this to claim that I am either uneducated or simply to dumb to write legibly, I have absorbed these attacks.  So I am asking you, please from time to time to just give me a little leeway.  I am far from perfect and I expect to be called out when I have wrongfully engaged in an ism.  I still seek to learn and to share but do take the time to consider that perhaps if I have not focused on something, it might just be to personal or triggering for me. 

There is an open posting policy on this blog for a reason.  I cannot possibly do justice to all of the issues that plague our little blue planet.  When I write, I do so from a very specific perspective. While I believe in honouring personal experience, I know that my voice cannot and should not be the last word on any issue.   So the next time you think about dispatching an angry e-mail because you feel that I have ignored an issue, take the time and write it yourself.  I am more than happy to post differing perspectives and to widen the conversation here.

So, again I am asking you to consider the journey that we have taken together this past year.   I have done my best to share, and to grow and to learn.  There are times that have made terrible mistakes and I own each and every single one of them.  I simply ask you to consider that when you demand that I lay it all on the line, please consider the cost to me and to my family.  I want to continue to write this blog and to share conversations with others but if I cannot count on a small amount of trust in my integrity, the relationships we have built in the past year are meaningless. 

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