- Posted June 13, 2014 by
This iReport is part of an assignment:
Living with a chronic illness
The Great Pretender
Living with an invisible disorder throws you into a world of the only people that really understand are the people with the same problem.
I was diagnoised with paraneo-plastic cerebellum degeneration. The basic problem is that my own anti-bodies have attacked the cerebellum and has caused permanent damage. The Doctors also tell me that I do have a cancer cell "floating" around in my body and could or could not ever surface.
The story started six years before I was diagnoised in 2007. I had several long term spells of vertigo, I was told I was prone to having vertigo. I had at least 8 times of having vertigo from two weeks to eight weeks. The last vertigo attack lasted eight weeks. I was very frustrated and my husband took the initative to get me into his Doctor. I went from a smallsoutheastern town in Ohio to a referreal for a Neurologist/oncologist at the James Cancer Center inColumbus, Ohio.
I have been through so many tests, cat scans, pet scans.spinal taps,blood test, and many more that I can't remember.
I do remember the day my Neurologisst told me that I have a ver rare brain disorder, I would neverimprove, but I could get worse if cancer developed or I had another attack of vertigo. I sat with my husband not sure that I comprehended what he had just told me, shocked. I cried, in the office, I cried in the halls of the hospital, I cried all of the way home
.The family was told and we have tried to have a NORMALlife! In my life it would never be normal again!!. The saying goes, "Life goes on!", well it did for everyone but me! My family totally supportme but do not get the full affect of my invisiable brain disorder! They do try!!!
In one day I went from an almost 20 year Deputy Clerk working inour County Courthouse in Probate Court to doing NOTHING!!
I can't find the correct words or have it in me to try to re-live the past 7 years. I had to quit work, quit driving vehicle, walking with a cane,severe headaches daily stuttering,having short term memory loss and more side affects that I can't remember.
I have an invisible disorder, other than the cane that I use for balance. When people ask it is earsier to say "I have a bad knee or anything that I can respond to without telling them the truth. If I try to explain that I have a partially dead portion of my brainand can't remember things, their response is "We ALL have memory problems when we get older!". This does nothing but goes thry me like a knide!! You do NOT have what I have, you do NOT know how I feel so don't tell me you understand, because as the saying goes, "don't judge someone until you walk in their shoes."
I have often said, it would be easier ifI had a GROWTH comingout ofmy head.If I did people could SEE that I have a problem. An invisible disorder is the worst thing a persone can encounter because people say, "well you LOOK normal."
I have been thru every emotion that you canlist, I have had depression, mad, cring alone, talking to a counselor, but nothing has changed. My Doctor told me that I need to grieve for the "OLD" Kathryn, she is gone, this is the NEW Kathryn. I donot like the NEW Kathryn, which has changed me to becoming THE GREAT PRETENDER!
THE GREAT PRETENDER, pretends to be happy, normal, and that in itself is tiring. I have to so people will come aroundme, no one likes to be around a person who is not happy! I have learned that quickly. I use humor as my tool for coping. It helpsother peopleenjoy me and I try tobekind, like my parents taught me to.
I need to stop writing because I have forgotten the basic rules for writing a story. I am sure it is not in the proper format, but this story just touches the tip of living with a partially dead brain......I am tired.....