This I Believe

This I Believe

I am sick. Very sick. If I am vigilant and seek medical attention when even the slightest change occurs, I won’t die from my disease. But my life never will be “normal.”

About four years ago, the worst flare of my Crohn’s disease began. Ultimately, I became housebound for almost three full years. After four major surgeries, three staph infections, a response to a drug that made my body attack my liver, and now, the failure of my body to produce enough of what we commonly call adrenaline, I keep going, not one day at a time, but one step at a time. Every step hurts.

I bought a car in July 2003. It has not yet hit 3,500 miles.

Yet, I have a wonderful life. I have a great home, the best cat on the planet, and a home office set-up that allows me to do from home all that I could do from an office.

I was interviewed recently by a reporter with a chronic disease, and when I said I have a good life, she looked at me as if I were crazy – how can you have a wonderful life when you are in pain, you are sick every single day, and you take as many as 18 different prescription medications every day?

I believe that my life is like a painting, surrounded by a frame, which is my disease. I can focus on the frame and be miserable, or I can focus on the painting – color, texture, composition. Kind of my version of the glass half full or half empty, but with content, something to see and feel and hear.

If you go to a museum, you go to see paintings, not frames. The painting is where the eye is naturally drawn, not the frame. To focus on the frame, you have to be quite deliberate because it is contrary to instinct to look away from the painting to study the frame. Indeed, when we focus on the painting, we barely see the frame.

What’s more, in my painting, I am the painter. While housebound, I started a nonprofit called Advocacy for Patients with Chronic Illness, Inc. and wrote Know Your Rights: A Handbook for Patients with Chronic Disease. Unlike most health care advocates, I help patients with any and every obstacle they face – insurance, employment discrimination, educational equity, Social Security disability – even student loan deferments and child custody proceedings.

This I did while I was too sick to leave my house alone. My painting is very strong and beautiful.

I used to say that the two things a disabled person needs is a computer and a pet. Now, I think there’s a third: activism. It brings me outside of myself, my daily pains, my frustration at not being able to come and go as I please.

If everyone – including disabled people – did whatever they are able to do, we can redirect others’ focus to see our paintings rather than our frames. This I believe.