still here

Surprisingly, I'm alive. Really, I shouldn't be here at all. Many stories exist, telling of people who almost died or were on the cusp of death who recovered and kept living. My story differs, and my right hand may never recover, but I'm still here forty-five years later.

I had turned three years old that month, and my concern that morning rested heavily on me. On the weekends, The Bugs Bunny-Road Runner Show was on and I loved watching it downstairs while everyone slept. Unfortunately I was never quiet enough for the sleepers in my family and always disturbed someone. I knew that morning I had a choice:miss my favorite show or stay in bed and let people sleep. While wrestling with this dilemma, I noticed my tongue felt funny, a little tingly and maybe a wobble in there. It stopped after a little and I continued to fret about my tv show. My right cheek began pulling upwards then, but stopped in the same way my tongue had. Next, my right arm bent upwards and stiffened. When I began to shake, I screamed. I screamed for every member of my family, including my twenty-year-old brother, who no longer lived at home. My last clear memory was of everyone running into my room.

It's all missing, the memory of my first Grand Mal seizure. I don't remember being admitted to the hospital or whether we went to the emergency room first. I know I passed out, because I always do during a Grand Mal seizure. My memories of the hospital are largely personal and a little funny now. Disgust with the reality of no girl toys in the playroom, only Tonka trucks. Outrage at the departure of my favorite strawberry pajamas. Extreme boredom, punctuated with a morning visit from the people with the scary Big Needle. Fortunately, I don't remember the spinal tap, supposedly a painful test.

My doctor believed I had Lupus, a condition that meant death at a young age, perhaps twenty. Ten years later, a different Neurologist ordered a CAT scan and we knew then it wasn't Lupus. I had Sturge-Weber Syndrome instead. Knowing it wasn't Lupus brought no real changes for me. I still took anticonvulsants, had seizures, and saw the doctor twice a year. When Dr. Sullivan moved away, my neurologist visits went, too. I simply had prescription refills from my family doctor, and kept going.

When I met my husband and told him about Sturge-Weber syndrome, he looked it up at Massachusetts General Hospital, a world-class teaching hospital in Boston. Apparently, a stroke is common with Sturge-Weber and most children died from that. I'm still here, though.