Today I want to talk about what reinventing my life has meant for me, this time around. This is not a new concept, at least in my own experience. I have read much about this topic in magazines and other publications, as the economy turned downward and folks began seeking different life solutions.
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