Having experienced and managed invisible chronic illnesses (in various forms) for several decades now, I can look back and see that one of my coping skills has been to 'change it up' - including geographical cures, when necessary. I have also reinvented myself through career changes; however, brain damage after radio surgery, and then TBI (traumatic brain injury) when my horse threw me just a month afterward, changed the reality picture dramatically.
It took a while for things to sink in, frankly. When I realized that I was not the person I was beforehand, life as I had known it had already begun to shift just slightly - barely perceptively - under my feet. Despite assurances from highly renowned physicians and therapists, as well as friends, that I was 'fine', I knew deep inside that the "me" that used to be - wasn't there in the same way. So for three long years, I endured gradual contempt from the medical community as my condition worsened. My assets, credit and savings were plundered, and my ability to work was ridiculed. To a man, there was virtually no one that truly believed that I was ill at that time. I had no family - no mom or dad - no sisters or brothers or children - no husband. None. So those friends who backed away, one at a time. Those hurt pretty bad. I will say that there were a small handful that did not; however, my emotional state was so broken towards the end (before I packed up to move) that I could barely hold up my own end of a normal relationship.
Today, my conditions have been thoroughly explained, and diagnosed, and I am under treatment. This occurred only after I travelled across the US to seek better medical care.
Those years took a toll on me emotionally. I watched friend after friend turn and walk away; stop calling. After surgery, I developed Emotional Lability - the surgeon nicked my frontal lobe with the laser - and thus I have severe difficulty controlling crying when the least trigger of emotion occurs. This is one primary factor in my inability to work. I also lost the ability to multi-task (completely!); cannot tolerate noise or bright lights; I become confused under certain levels of stimuli. There are so many other things that trigger problems that it is not worth listing. I have brain damage. In any event, after three lengthy and painful denials, I was finally approved for SSDI (Social Security Disability and Medicare Insurance) coverage. Three years after my disability date. After seeking help from my Congressman.
I am not alone in my experience. Invisible Chronic Illness is a painful, lonely life for those who happen to roll those dice. A common phrase among us is, "If we had a wheelchair, perhaps others would recognize our situation more respectfully." This is not to say that we want a wheelchair. It is to say that we are weary of being told that since we look 'just fine', we should be ' just fine'; we should 'get more exercise'; 'eat better'; 'think more positively'. A good friend told me yesterday, "if my left leg was missing, would someone tell me I should put my leg back on?" Okay, so perhaps my point has been made about Chronic Invisible Illness. I hope this helps someone understand, and even develop a degree of empathy. This would be great for you and the person you know who deals with the illness(es).
So, I am here in Seattle, and my opportunity to reinvent myself is wide open! I have all the beginnings I dreamed of, while awaiting back in Florida during those dark days. Wonderful cool weather (no more hot, steaming humidity) and the beauty I have only briefly begun to know. After 20 years of visiting, I am so proud to now call the Pacific Northwest my home.
In my next post, I hope to talk about my progress with my health as well as forays into work and fun...
Stay tuned and thanks for listening.
--Terry
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