“I’ll send someone in to schedule the test,” the specialist says to me. “Wait here a moment.” I nod and watch her leave. As the door clicks shut, a sinking, sick, hollow gap grows and groans in my chest. I shrink against the uncomfortable chair, stare at my hands or count the number of tiles on the floor. I don’t look at the posters of disease on the walls. I already read them earlier. It never gets better, this moment after the door shuts and there is only you and the white white room. It never changes. The me who...
While in Paris, Mom, Laura and I went to Musée d’Orsay to see the Impressionist paintings. It wasn’t until I saw the first Renoir that I remembered he and I share Rheumatoid Arthritis. When I saw that first painting (I can’t remember which it was), his words rang in my head as if I’d just read them: “The pain passes, but the beauty remains.” (more…)
Today I was walking to the library, which is about five minutes from my townhouse, and I couldn’t make it. I had to stop and rest. After about ten steps from my townhouse, that autoimmune fatigue started settling over me like a boulder. The best way I can describe this sort of fatigue is that I can feel every heartbeat sluggish and heavy. I have to concentrate on taking deep breaths, and every one is like breathing through a straw. If I close my eyes, I become dizzy. The pressure on the back of my head makes a migraine buzz...
Wrote this while I was abroad, but I didn’t get the chance to take it to Tolkien’s grave. Thought I’d share anyway. Dear Dr. Tolkien, I wanted to thank you for changing my life. When I was a little girl, my dad would read your books to me and my siblings. He read them three times to us, when I was eight, and again when I was twelve, and again when I was fourteen. When I was twelve I prayed for Frodo after he was stabbed. Later I remember running to the book and turning to the passage in the...
One thing that fascinates me, perhaps in a morbid way, is how disability and disease effects every part of a person’s life–especially when it’s not an physically obvious diseases. Today I read Nancy Mairs’s essay Disability, which I’d highly recommend. One of my favorite quotes comes at the end: But it will be a good bit easier psychologically if you are accustomed to seeing disability as a normal characteristic, one that complicates but does not ruin human existence. Achieving this integration, for disabled and able-bodied people alike, requires that we insert disability daily into our field of vision: quietly, naturally,...
