Choosing How to Hope

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Name: Laurie McKiernan
Email: lala@waste.org
Date: 11 Nov 1999
Time: 20:22:28

Story

About two years after I acquired my disability, a friend of mine looked at me and said, "You have a choice here. You can keep wasting all your energy trying to find someone to cure you, or you can admit you have a disability and focus on building yourself a good life."

At first I felt stung. I'd been so conditioned to think that healthy meant physically perfect that I didn't know how to have a "good" life when I felt so ill. I'd been staving off thoughts of not wanting to live with the extreme pain and fatigue by hoping the next doctor would believe me, the next pill would fix me, the next round of physical therapy would at least offer some relief.

Then one morning while I stared at the wall waiting for my body to gather enough strength to carry me to the bathroom, my friend's words came back to me. They rolled around in my fuzzy brain for a while until I suddenly realized I'd had this choice before. When I first came out myself as bisexual, I realized (after a lot of agonizing) that I had a choice between hoping I would somehow suddenly not be bisexual and hoping my community and family could change their assumptions about what it meant to be bisexual. I longed for the easy road, the sudden transformation into "normal," but I knew in my heart it wasn't going to be. So I chose to hope my world could change. I chose to work for that change. I found people who could embrace me for who I was and built myself a life full of wonderful, caring people. I worked to educate people about stereotypes and bigotry and the ways they cause pain to ourselves and others. It wasn't easy, it wasn't painless, it wasn't without loss, but I was happy. I had a good life.

And then I got sick. I was eventually diagnosed with fibromyalgia, multiple chemical sensitivities (MCS), familial tremmor, and disthymia, all ambiguous conditions with no cure, little treatment and very little understanding on the part of most doctors. I spent the first two years of my illness terrified of death, afraid the community/family I had built for myself would abandon me if I admitted I was sick, if I asked for help.

That morning in bed, waiting to feel strong enough to sit up, it hit me that again I had a choice; I could hope some doctor or god or magic pill would wipe away this illness and make me "normal," or I could acknowledge that what I truly wanted was a world in which I could be my whole self, whatever and whoever that turned out to be.

When I look back at it, I chose the second option because I saw the most hope there. Hope that I could wholly accept myself for who I am. Hope that there are people in the world who are searching for that same acceptance. Hope that we can build communities that do not flinch when adjustments must be made to allow all members to participate, communities that do not turn away in response to whom a person chooses to call family. I came out to my community, my family and friends as a person with a disability. I asked for help. Many of the people in my life chose to withdraw from me, but as soon as I began to think that my fear of being abandoned was coming true, new, reliable, caring people stepped in to fill the gaps. I learned that having a disability doesn't mean that I am helpless. I learned to stand up for myself and ask for what I needed on my own terms. It dawned on me that obstacles to doing what I loved didn't mean I had to stop; I simply had to figure out a new way to do that thing. I found new ways to influence the world. I have grown to not only have hope, but to trust that the right things to hope for will be there when I need them. I am grateful for my disability; it has helped to make me who I am.

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Name: avmitzwvpio
Email: unzall@rjuysw.com
Date: 07 Jul 2008
Time: 20:37:23

Story

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Name: Thomas
Email: coco@myself.com
Date: 06 Feb 2008
Time: 16:13:45

Story

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