Today….. I am just weeks away from my 53rd birthday. To a large extent, this blog is for me. To gather thoughts, accept a new reality, figure out how best to remain on planet earth a while longer, and sift through some of life’s tougher times.  I will also share this with my mother who has a keen sense of what others are feeling.

I have been sick for more than half of my life. I have suffered through crushing pain, discomfort that causes sweats, nausea, hair loss, muscle spasms, muscle atrophy, and worst of all-devastating, life destroying fatigue. My body had many nagging symptoms of a chronic illness from the time I was seventeen. These problems would come and go, so I never realized they were part of just one disease.

I visited all kinds of doctors, mostly orthopaedic surgeons. Burning, bruising chest pain sent me to a cardiologist at age 24. He sent me to Cleveland Clinic’s sports medicine department for a cortisone shot. I was told I had costochondritis. I was happy to have one problem solved, for I had been unable to laugh or sneeze without aggravating this particular ache. It sounded quite basic, inflammation of the cartilage that connects ribs to the chest bone. The wish bone, actually.

I have had many cortisone injections, starting at nineteen in my S.I. joints, and more recently in my hip, knee, hand, head, and elbow. For a long time, I tried to treat my pain, but was not successful. I was taking sixty aspirin a week for several months and this led to a different set of problems which sent me to another doctor. By this time, I had no appetite, energy, or even the strength to drive a car. It took all of my energy to open the kitchen cupboard to get a glass or plate. When I stood in front of the stove to cook I felt sharp pain in my heels and lower back. It wasn’t much better trying to sit down because my sit bones felt bruised, and my body seemed to freeze in the sitting position. This became so problematic because my muscles seemed to actually become short and rigid and when I tried to stand up, I had severe muscle spasms around my ribs. It is such a hard thing, planning each move you make. There is the sense of dread, knowing the pain to come, never mind how awkward and ridiculous you look.

It kills me to remember my most excruciating year, I was twenty-five. I didn’t look, feel, or even believe I was this age; my hair seemed to have lost pigment, it was a drab grayish brown, dry, and falling out. I was tested for many things (after being questioned whether I was using street drugs, or not) including parasites, aids, and who knows what else.  The diagnosis was anemia, and malnutrition. Most of what I ate went right through me in the form of diarrhea. I had to stop taking aspirin which meant I had to move back home to be taken care of by my parents. My mother had to help me turn over in bed, and she experimented with soft pillows under my legs and lower back.

I was at once, an old woman and a child. I needed help the way a child might, but my fussy complaints were like those of an 85-year-old. I guess chronic illness does this. Perhaps, it was more devastating because of the career I had chosen, and the fact that I had been a gymnast, diver, and dancer almost my entire life. It is hard to swallow the fact that you are somehow not yourself anymore. Harder still, to have doctors tell you they can find nothing wrong.

These words seem to be a lot of rambling nonsense, but it helps me to digest and mourn the loss of who I was. It may be impossible for me to ever put things in order. I can talk about my career separately, as well as the pain caused by people’s disbelief and eventual ridicule when I finally knew what was happening to my body.

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