This is a difficult topic for me. I don’t even know if I can do it justice. However, given recent events, I feel a need to discuss this. Friends and even family might not understand how significantly illness has impacted my life.
The impact of illness on my life began before I was born. A couple of years prio, 4-month old brother died unexpectedly from an undiagnosed enlarged heart. As you can imagine, my family was heartbroken and traumatized. When I had a febrile seizure at 11 months old, it felt like hell. They had to put me on ice – literally – to bring down the fever until I could get to the hospital. The febrile seizures recurred regularly, and I was put on phenobarbitol to control them until I was 12. The barbituates caused chronic constipation, and the number one result of chronic constipation is appendicitis. I’ll talk more about this shortly.
Falling sick with colds and fevers and going to the doctors’ office were a significant part of my childhood, frequently disrupting plans. I remember my mother often seeming frantic. Any hint of anything other than perfect health, even a sneeze, was accompanied by her asking me in a worried tone, “I hope you’re not getting sick.” I dreaded and hated it when she asked me that question.
I began to touch my own forehead to check for fevers when I wasn’t feeling well. Her anxieties became my anxieties. I began to keep how I was really feeling to myself as long as possible because I could not stand to hear that panic in her voice. I learned how to pretend I was fine so I wouldn’t have to hear the fear and the pity in her voice.
In second grade, my appendix burst on an operating table. While they saved me, I developed peritonitis that required a second surgery. I was out of school for three weeks. I missed out on playing the part of Cinderella’s wicked stepmother, a part I much relished. Three years prior, I missed out on being Betsy Ross in our town’s bicentennial parade because of fever. By that time, I decided that it wasn’t worth it to put too much effort into going after my heart’s desires because I could fall ill at any time. I couldn’t stand the pain of the disappointment, so I decided regret was preferable to disappointment.
When I came back to class, I was given hand-made cards from my classmates, some of which I still have and are not in the best condition. I remember sitting at my desk again, surrounded by my classmates, who left tons of crayons on my desk so that I could participate. I was overwhelmed by the outpouring of support and love my classmates showed me.
At the same time, I felt like an alien from another galaxy with experiences that no one I knew, not family nor friends nor classmates, what I had been through and how scared and helpless I felt. These experiences cast a shadow of separation between me from other people. It influenced what I thought I could and wanted to do, how close I felt to others, and what I was willing to share. Even good experiences could not ease the hole that I felt inside; the one that said I was different, that I had suffered pain and loneliness, and that there was nothing no one in the world could do to change that.
~~ End of Part I~~
Continue with Illness, Alienation, and PTSD – Part 2.