Saturday, April 11, 2009

Sometimes Disability Is A Shared Identity

Recently I went public with the fact that I have Fibromyalgia, Benign Essential Tremors and Sarcoidosis.   When the weather is cold and damp I am pretty much trapped indoors.  Even on warm days, I am not able to walk long distances, so shopping is something I rarely do anymore.  Thankfully my unhusband has taken over most of these duties without any form of complaint.

image He must now buy things for me that I have always taken care of for myself; this includes my tampons and underwear. I recently decided I needed new panties so I told him the brand and the size to get and off he went to Walmart to purchase them. (yes I know Walmart is evil but I live in a small town)  As he stood there in the section trying to find what I asked him to get, the women started giving him dirty looks and moving as quickly as possible to get away from him.  After finding what I wanted he continued his shopping and happened to run into one of the women he had seen in the underwear section who proceeded to glare at him like he was some kind of child molester.  He had to loudly announce to her that he was not following her and was shopping for his sick wife.

Another time when I had decided to brave the pain and go out I was approached by a Walmart employee asking me if my unhusband had beaten me.  On one hand I was thankful that someone thought to reach out to a woman that they thought might have been battered and on the other I was upset that such an identity could be attached to man that I love and respect because of an illness I have.

It is so easy when you live with chronic pain to only think about what you are going through.  The pain can blind you to all else and leave a shell of your former self.  There are times though when I look at my unhusband who has done all that he can to be supportive, patient and kind and realize that my illness has indeed attached itself to him as well. 

Just as my life is restricted so is his.  There are days he must be both father and mother to our children because I barely have the strength to roll over.  As he cooks (much to the children's disdain), cleans, wipes bums and helps with home work all on little to no sleep, I cannot help but wonder how it is he manages to never be resentful.  The kids are very quick to inform him of every single culinary slight that he makes and that includes forgetting the cinnamon on the French toast. We were an active family that loved to play more than anything else and now sitting at the table playing monopoly is a struggle for me.

We have attempted to find various ways to negotiate my illness so that as much as possible I can continue to participate in family activities but I would be lying if I said that it was even close to what we had or would have continued to have had I not gotten sick. 

image As he patiently tries to talk me into getting a wheel chair so that we can take longer trips as a family, I must weigh my ridiculous sense of pride against spending time with my family doing the things that they want to do.  I know that I am differently abled and yet other than the cane which I use walk there is often very little evidence of how ravaged my body is by my two chronic illnesses.  I am resistant to sit in a wheelchair because I know  I will no longer have the appearance of an able body.  It is the last vestige of privilege that I am holding on to.  I don’t want to be treated differently even though I am.  I don’t want to be offered a seat, or told to rest.  I want to be allowed to fight the pain on my own terms. 

My oldest child is wise beyond his years and knows much more about illness than any child should.  It has caused him to be incredibly empathetic but I cannot help but feel saddened that some of the innocence of his youth has been robbed by my two diseases.  He still wakes with fear at the thought that I might die and leave him, even though I have explained countless times that people rarely die from the diseases I have.  Even when I smile through my tears I know that in my heart he sees the pain that I cannot hide and on more than one occasion has tried in his own way to bring me relief.  Sometimes he will sing Sweet Caroline to me because he knows that it is my favourite song, or he will simply come and cover me in kisses.  From the moment of his birth he and I have always had a special connection.  The love I feel for him really defies words.

image This year he stopped believing in Santa.  He did not find his presents early or decide that there was something wrong with the Santas in the mall.  Unbeknownst to me, he had written Santa a letter asking that I be cured of my diseases.  He copied the address off of the television that Canada Post shows in their commercials and was certain that he had found a way to make everything better for me.  We spent much of Christmas morning crying as I had to tell him that I was indeed still sick.  I will never forget the sorrow in his big brown eyes or the love he showed me that morning.

Having the family that I do makes it easier for me to deal with the day to day pain of having two chronic illnesses.  I know above all else that in terms of love I hit the jackpot a million times over and it is this that pushes me to confront my own desire to hold on to privilege.  Mayhem, Destruction and the Unhusband are everything to me and somehow knowing that I will never be the same is just easier to negotiate knowing that they will catch me when I fall and wait for me when I need to walk slowly.  If we all had just a little bit more of the kind of love my men give me, the world would be a much happier place.


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