The Phoenix Zine

The Tolerator’s Manifesto

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When it comes to the language of illness, I hate the word accept.

The concepts behind the word bother me.  If I accept my illness, then by definition I approve of it and consent to how it affects my life situation.  I am implying that I see my illness as suitable, and am willing to accommodate it (dictionary.com).

What bothers me most is that there is also some inference behind it.  If I can accept my illness then somehow it will open up the path to understanding and enlightenment and my experience of illness will be much easier.

This, in my opinion, is ridiculous.  It offends every fibre of my body with its arrogance.  Telling others that they need to just accept being ill feels like a slap in the face from people who do not realise what a psychological and physical challenge being ill is.

To that end:

I do not accept that I have to be sick for the rest of my life because of a couple of random genetic mutations.

I do not accept that the life-saving treatments I’ve required over the years have also endangered my life on several occasions.

I do not accept that the state of my physical body is going to drastically limit the number of years I am alive.

And I do not accept that accepting my situation is going to make it all better.

Seeing as I am unwilling to accept my illness the most obvious alternative is denial.

I could pretend I am not ill.  I could refuse to take my medications.  I could take a passive role in my doctor appointments and wait to be pestered to have bloodwork and other tests by my transplant co-ordinators.  I could actively ignore the limitations of my body by pushing myself physically on a constant basis and by doing so, risk making things worse.

I admit, denial is appealling and I have used it before.  An invisible illness makes denial even easier because the outside world does not know you are dealing with illness.  Unfortunately, denial only goes so far.

When I was put on the heart transplant list, I could no longer deny that I was in heart failure.  Using a walker means I can no longer deny that my illness has led to my requiring assistance to walk.

On a mental level, I can also try to deny the fear and anxiety I feel about my illness, pushing it down until I am able to pretend that things are okay.  In my experience denying feelings means one of two things: either they come back up when I am trying to relax and my guard is down or I cannot lower my guard to enjoy life because of the powerful feelings that are hiding behind it.

Thus I am left with a situation that is both unacceptable and undeniable. 

This is my body, and although I am not pleased with its condition what I want more than anything is to stay here on Earth with my family and friends as long as possible.  If my body goes down, I go down.

So I will tolerate my illness-ridden body.  I will put up with its limitations and do my best to live within them.  I will permit the bloodwork, the biopsies, and the drugs it takes to keep my body functioning.  I will work with my medical team and seek their advice.  I will deal with fear and anxiety of being in this body because I want to stay alive.

Among those who personally deal with chronic or life-threatening illness there is a saying, “It could be worse, I could be dead.”

Although I am able to tolerate a lot of things, I’d like a higher standard of living than that.  Everything is not okay simply because I am not dead.  The truth is, there are things in life that are worse than death.

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