MY LIFE STORY IN SHORT

I'm Ila Marie. My mother's final request of me was that I write the story of my life and what it has taught me. This turned out to be more difficult than I thought. This is a synopsis.

My name is Dr. Ila Marie Goodey. I was born to a young farmgirl and her cowboy husband in Cache Valley at the Northern end of Utah. I was their first child and they were filled with the dreams and dedication of parents everywhere.

When I was three years old a bout of polio destroyed many of my physical abilities and made their dreams for me harder to believe in. They were encouraged to let go of their hopes of a happy life of contribution and achievement for their daughter. I was unable to move and was in an iron lung for what the doctor's considered permanently. Perhaps from my parents faith and from the irrepressibility of their youth they held onto their dreams and set me on a path of struggle and reward that began to shape and prepare me for what has been the joy and mettle of my existence.

By their choice, I attended public schools despite my physical difficulties and participated with my peers in the education, friendships, and mishaps common to our age. I loved school and community and graduated from my local northern Utah high school involved in both scholastic and extracurricular activities. My parents saw me as full of potential and capability not as helplessly limited by my obstacles. I trusted their assessment and never accepted "NO" as the answer to my life, nor for that matter, to the life of anyone else.

After five years working and discovering the world and my place in it, I began my studies at the University of Utah. My belief in everyone's ability to find joy and contribute something meaningful has been an inextinguishable torch guiding my beliefs, values and decisions. Though its flame has fluttered under some winds, it is still lit. At the University, where I was certain I would become a writer, this belief led me instead to a PhD in Psychology and to endeavors which are the best achievements and challenges of my professional, civic, and even personal life. It was from these efforts also that I planned to make my living.

In addition to my professional aspirations, I grew to love and planned to marry a man I met in college. We became engaged and hoped to raise a small family. However, my health faltered and I came to require regular medical support too expensive for me alone, or even as part of a professional couple, to afford without help.

The American healthcare system was in a stranglehold to private insurance companies that had lobbied well for laws friendly to their ambitions. In direct contradiction to their stated mission, the companies were allowed to define me as uninsurable and thereby reject me. The government medical coverage was my only source of help and it required that I relinquish my professional ambitions and abandon my plans to work, marry, and raise children in order to meet the eligibility requirements of the only program that would make the care I needed possible. It also required that I live far below the poverty line for as long as I needed this care which would be for the rest of my life. Every six months from then on I was rejudged to determine whether I would be allowed to continue living. By bureaucratic fiat, my personal dreams were ravaged and the life for which I had worked so hard was prohibited.

This arbitrary set of restrictions to my life also deepened my social and political activism. I have worked, lobbied, made application to agency and political leaders, but still I am required to pay up to 50% of my below poverty income to remain able to receive what most Americans would consider poor access to healthcare. I worked equally as hard to change policies and try to earn the "right" to benefit financially from my own labor and be allowed to reach a normal standard of living, freedom and privacy in my personal life. These goals have never been met.

For my efforts I have received acknowledgement and appreciation from scholastic, religious, professional, and organizations, advocacy and charitable groups, a major private corporation, the Utah Legislature, government agencies, and my Governor. Despite this public appreciation, every year as the agencies which provide my medical support set their budgets, I lose more and there is usually a debate about whether to expend the funds that I and others in my circumstances need to stay alive. In one year alone, I was in immediate life crises six times. Only one threat was the state of my health itself. Five were from the acts, cuts, and restrictions of vital supplies, and regulatory changes of the agencies of the healthcare system. My ability to fight these dangers is weakening as I am.

I remain physically disabled and must use a wheelchair for mobility, a constant source of supplemental oxygen, 24-hour attendant care to assist me in all of my physical needs, several pulmonary medications, critical care intervention, and a ventilator for breathing.

Current proposals promise further threats and horrific struggles. The fees I must pay for my monthly entry to the system may be raised again as well even though they are already more of my income than the tax bracket of the richest Americans who have the sympathy of our current legislature. Medicare and Medicaid both plan to give me less as well, possibly not sufficient to remain medically stable enough to survive. This is, and has been for all of my adult life, my most painful and constant life struggle.

Though my personal health is worsening more rapidly now, my life's work remains my focus. For now, and as long as I can persist, I volunteer my time and the skills I was blessed to learn to people who need them, to the community organizations which represent them, and to a continuing effort to try to make these issues a priority on the state and national agenda.

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Email me at igoodey@hotmail.com

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