Redefining My Value: Aging with Chronic Illness
Julie
State: Florida
Congressional District: FL12
Diseases
Cancer, Genetic Disease, Immune Disease, Neurological Disease, Rare Disease
Issues and Challenges
Julie has encountered: Access to Expert Providers, Caregiving, Discrimination (nonmedical), Medical Discrimination
My Story
I am at the end of the story continuum. I have fought for those I cared for, and loved, or to help those in need.
I was raised in an environment composed of boarding school, education, and elocution. I was raised mostly by people other than my parents – and myself. I have always been quite good at fending for myself and being a problem-solver. I have been fortunate; I was successful and had good friends, sailed for 25 years, worked on my pilot’s license, played guitar in folk singing groups, traveled between countries frequently, and never felt limited in opportunities available to me. I made mistakes and tried to learn from them. I tried too hard too often. I find I disappoint myself, more than I probably do others.
Most of my friends, acquaintances, colleagues, and loved ones are dead now and I find myself at the short end of a long continuum. No family, husbands, children. Most are overseas and live lives I no longer recognize.
I retired many years ago and struggled to reinvent myself, to construct a new identity that would provide me with new rewards sustainable to the grave. And while I did not miss my prior life, I found gender and age biases were quick to suppress my energies. It was an education I was not prepared for and, understandably, railed against.
Then I became ill with numerous afflictions, some not unexpected, and some sniffing of government work in strange places. Job offers evaporated - for now, I was not only sick but over 65 and, consequently, bloody well near death according to the private sector and the medical sector.
Surgery and disease converted my TV interview voice to a crackle, and my feistiness to a whisper. My hands no longer create portraits (my first way to make a living), my voice no longer sings, and my body is bent so I dance in my dreams.
This is no Mephisto Waltz: I can write. I can research. My soapbox is a laptop. Now when I shake my fist at the heavens, it holds a pen. That fist isn’t grasping at Golden Rings, I’ve snatched them all, and that trembling fist doesn’t hold a crumpled list of dreams and defeat. Through all of this, I don’t feel conquered, useless, or helpless. I have realized, however, that I will make new dreams and live their outcomes.
I will keep writing, and shaking my fist, while squeaking out protestations on how people are wrongfully denigrated, marginalized, and dismissed. I’m just starting – again.
My Motivation and Inspiration
To be of use to others. When I die, I want every skill set I have to be drained from my spark. Spirit goes on, anyway.
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