Living With Sarcoidosis Won’t Define My Growth

In 1989, I rented my first apartment. It was in a wonderful brownstone in the same area where I grew up. My family used to shop at the Italian Market in South Philly, an area that stretches about six or seven blocks where outdoor vendors sell merchandise, such as fruits, vegetables, meats, and fish. My apartment was only a few blocks away, and having access to everything I needed deepened my love of cooking.

When I moved in, my priorities included getting a great sound system and a fish tank. Once I got both, I considered myself settled in and officially an adult.

My fish tank was the star — the showpiece for everyone who visited. I had three fish in the 25-gallon tank, which was decorated like a Jacques Cousteau adventure. Two were black oscars, there to look intimidating, and the other was a pleco, which cleaned the tank.

After a few months, I accepted a job in Washington, D.C., so I had to give up my apartment and my fish. My grandfather was more than happy to take the fish and the tank, and he got a real kick out of feeding them. To him, watching the fish eat was better than watching wrestling.

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I stayed in Washington for less than a year, then returned to Philadelphia. When I visited my grandparents, I saw how big my fish had gotten. Both of my grandparents enjoyed having them, but the fish needed more room. They wouldn’t continue to grow without a bigger tank. Unfortunately, my grandparents had only allotted a small section of their dining room for the tank, and a bigger one wouldn’t fit.

As much as we hated to do it, we gave the fish to a pet store. The employees told us they’d likely find someone who wanted bigger fish. We hated to part with them, but we knew it was for the best.

Only you can define your tank

I never thought much more about the fish — until I met with my cardiologist recently. He seemed pleased with the progress I’m making in managing my pulmonary hypertension. I told him I go to the gym regularly and am committed to moving my body. My medications and determination seem to be helping.

If you’re not careful, ever-present thoughts about sarcoidosis will keep you in a box — or, in my case, a small tank. Every time I’ve been hospitalized, I’d wonder how much more of my life sarcoidosis wanted. I kept concentrating on the “what ifs” and “how comes” instead of telling myself to keep moving and keep living.

Living with sarcoidosis is like living in a small fish tank. Those constraints could be physical or mental, but either way, you can only grow as big as the tank you’re in.

Don’t allow external circumstances to define your growth. If you stay stagnant, worrying about how sarcoidosis has changed you, then you’ll keep swimming in a small tank.

Like the late NFL player Reggie White, I’ve never let sarcoidosis confine me. Earlier in my career, I was blessed to work with White (along with some other really cool folks like Barack Obama, James Earl Jones, and Ray Charles), but what made White so special was that he played professional football while living with sarcoidosis. I never knew we had that connection until one of my physicians told me years later. White was the most humble person I’ve ever met.

Reggie White was the epitome of living in a big tank. He continues to remind me that even with sarcoidosis, my tank can be as big as I allow it to be.

NFL player Reggie White’s autograph. (Photo by Charlton Harris)

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.