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My Journey Of Disability Dom De Bellis

 

   I grew up the happy son of a lovely immigrant couple in the Chicago suburbs. I had a normal home life and even managed to get through college, thanks to the U.S. Navy and the G.I. Bill. I was happily running my business a few years later when one morning—bam!—I learned I had a brain tumor.


That morning, a Saturday, I woke up and began to get ready to meet my buddy for lunch and a movie. But my stomach was aching and soon I was running to the bathroom, vomiting. I figured there must have eaten something wrong with the Chinese take-out the night before. So I cleaned myself up and before I knew it, I threw up again. By this point I figured for sure I had food poisoning, so when my buddy drove up to pick me up not long after that, I asked him to drop me off at the ER.

I had contacted my parents by now, just to let them know I'd be going to the hospital and not to worry. Of course, they dropped what they were doing and met me and my buddy there when we arrived. The nurses at the ER were great; they took care of me without much administrative hassles. I was looked at by a doctor before too long. Then things started to get a little crazy. The doc ordered a spinal tap because all that forcible vomiting had burst all the capillaries in my face and eyes, and they suspected meningitis, an infected swelling of the brain's outer lining. He also ordered a CT scan of my head to see if there was swelling on my brain. When the spinal tap came back clear, we all breathed a sigh of relief: that meant no meningitis. But the CT revealed a large "mass" in the middle of my head, about 2 inches behind my eyes. The mass was the size of a golf ball and its location was right where my pituitary gland was supposed to be.

Within a couple of days, I was in surgery, followed by a recovery filled with steroids and other drugs to keep the swelling down in my brain. It turns out, you don't want any extra tissue in your cranium. After a month or so, I began a course of radiation treatments to burn the remaining tumor that survived the surgery. They aimed an x-ray gun at my smoothly shaved head, criss-crossing the beams to make them overlap in just the right spot to concentrate the radiation in the one spot where it would do the most damage to the tumor while minimizing damage to the healthy brain tissue.

Drug therapy and radiation made me feel worse than the tumor had. But the coming years would be ones of increasing disability and dependency for me. The tumor had already eaten most of my pituitary gland and part of my hypothalamus, too. Surgery and drug therapy hurt what little was left, and of course, radiation burned what remained to a crisp. What resulted was catastrophic hormone deficiencies. But what I hadn't been prepared for was how this all would affect my life. I was told I could return to work and live a normal life once I'd recovered from surgery, but the journey has not been so rehabilitative. Thanks to chronic fatigue and weakness, I gradually lost my ability to work.

My finances suffered, what with medical bills and mortgage payments eating through my savings. Not earning anymore meant I had to live off my assets. So my bank accounts, retirement funds, and even my home equity became my means of support. I began to pay for medical care with my credit card. Eventually, of course, I could no longer afford my health insurance premiums. Desperate, I turned to public aid. I filed for bankruptcy. It was hard enough being disabled—now I was flat broke, too. But this is not where my story ends . . .

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