For those of you who would prefer to read my story from the Moth-like storytelling I did three weeks ago, here is a transcribed version. If you'd prefer to listen, you can see my previous post with the YouTube video.
The State of the Story was the first time I'd tried to encapsulate my story into a 6-7 minute time frame. I've been telling my story in pieces for 20 years through blogging, but had never summarized it in this way.
Here is my story...
Some disabilities are invisible.
In 2012, I made an appointment to see a new counselor. I set it up so that I didn’t have to do any stairs and so that I could lie on a sofa because I wasn’t well enough to sit up for the duration of the appointment.
As I told my story, Evelyn looked at me and said, “Do you think you are grieving?”
I burst into tears because in the 15 years that I had been sick, no one had ever mentioned grief as part of the process.
In 1998, after college graduation, my mom took me to New York City as a gift. We visited the Empire State Building where we took the elevator to the 102nd floor. As we got off of the elevator, I suddenly felt as if I might pass out. We got back into the elevator and rushed back down to the lobby where I sat down. But the police kept telling me I had to sit up.
That night, back at our apartment, I was up all night with a racing heart, the shakes, dizziness, diarrhea and nausea.
Shortly after that trip, on June 18, 1998 I woke up with a strange headache and had chest pain along with other symptoms. I never got better.
This began 17 years of being mostly homebound and sometimes bed bound. I spent my days going from recliner to recliner and back to the bed because I couldn’t sit up for any length of time. I even ate dinner in a recliner.
On a ‘good day’ my mom might take me on an outing. We might go for a drive or take my wheelchair to a park. A friend might visit while I lay in my recliner. Sometimes the fatigue was too intense to even tie my shoes.
I saw over 100 doctors in six years. I was told everything from ‘get a boyfriend’ to ‘you’re afraid of the real world’ to ‘if we just put you on a treadmill we can prove you are just deconditioned.’ I was handed a lot of Prozac. Finally, we met Dr. Kahler who said: “You are sick. Something is wrong. Listen to your body. And don’t take no for an answer.
After six years of wandering in the dessert, Dr. Kahler lead us to Dr. Peter Rowe at Johns Hopkins Children’s Center. Dr. Rowe spent over three hours with us going over everything from “Were you breastfed?” to “How long can you stand without becoming lightheaded?” He diagnosed me with Chronic Fatigue Syndrome, dysautonomia and host of other conditions. We finally understood why I had almost passed out in the elevator.
I missed out on my freedoms and all of my dreams for my 20s, 30s and 40s. I watched with envy, jealously, sadness as my friends went to grad school, worked, bought homes, traveled, got married and, hardest of all, had children. It physically hurt when I thought about not becoming a mom. Every day when I first opened my eyes I would hope that maybe I would feel better.
Shortly after I met Evelyn I turned my grief into action. I began fundraising for Dr. Rowe who had gradually found ways to chip away at improving my health.
That was over a decade ago.
It’s now been over a quarter century since I first got sick and half that time since Evelyn said: Do you think you are grieving?” I no longer try to hide my disability. I embrace my identity as a disabled person. A couple of years ago I stood in front of our mayor for Disability Pride Month and explained how inaccessible our town is and why it matters to include disabled people. Disability is hard and messy and full of loss. It is also what makes me creative, adaptable and authentic.
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