Multiply Disabled 59 Year Young Woman Seeks Grant To Write Health Care Book
by Jane Hummel
(Arlington Heights Illinois, USA)
My very first job was as a volunteer at the local nursing home. I needed to get to the second floor. The janitor was washing floors on my floor, so I jumped into the dumb waiter and pushed 2.
A few hours later the Fire Department, Police Department, and the principal of my school and my mother greeted me! I don't think I have ever used a dumb waiter since that day.
I am a 59-year-young divorced woman with four adult children and three grandchildren. They all live in the area and I live with my youngest and her son; she is also my PA (Personal Assistant for Home Care) for my safety and a multitude of task I cannot do for myself.
The hardest part of this disability thing is being realistic with myself. Every day I have to stop myself from doing simple things that I can't do anymore. Back in the day we stressed "Ability" not disability. Somehow that faded into the past.
While in a stressful, emotionally and financially abusive relationship for six years, I was attacked by this person and almost lost my life. He had already gone through all of my money, savings and got very close to my self-esteem.
The head trauma and shock to my spine ignited a firestorm of medical diagnosis that were either not recognizing or were in remission.
I got an order of protection, had him removed from the property and then was told in May of the following year that the foreclosure went uncontested and I had no home.
The year 2003 was a blur; I had worked since the age of 15 in the healthcare field and since I was 25, as a Licensed Health Care Administrator in Nursing Homes and Juvenile Correction facilities.
I loved to work; a 60-hour week, 52 weeks a year was heaven and I would always have a side job since my type A personality never rested. So I was too smart to be sick… translation… I was too clever to concede I was sick.
Since I was a contract manager and the economy was starting to collapse, work was slim and my ability to concentrate, maintain any short-term memory and my gait was inconsistent making employment unrealistic.
I did not renew my driver's license; I felt I was a hazard so now my cane is my companion. This culminated with a MI in October of 2004 and everything seemed to fall apart and yet come together in a strange way.
My Doctor did MRIs and CTs and concluded that I had Multiple Sclerosis, Autoimmune Disease, Atherosclerosis, Hashimoto Thyroid Disease and frequent TIAs (mini-strokes).
Many of these medical issues I had long before this incident, but was never aware of their existence. Many diseases lie dormant in our system and can be activated by an illness, stress or violence of any kind.
My medical treatment was limited to medications only since services for Medicaid in the county I resided were slim to none. I was deemed uninsurable back in 2004 and Medicaid kept me going.
But since I was not yet approved on Disability and had no discernable income I moved frequently, got evicted three times and as karma will rule, the past three landlords defaulted on the property I was renting.
In August of 2007 after repeated denials and Administrative Hearings with the Judge and the Vocational coach and Medical Physician, I was found to be permanently disabled on April 13, 2007.
I will never understand how they pick random dates, but after being told time and time again that I was too young and well educated to be disabled additionally made my situation complicated.
In August of 2009 I was awarded Medicare benefits, not a minute too soon. My medications cost over $4500 a month, my housing runs about $2200. My income is $1513. My kids help when they can but it is a delicate balance.
Going through the disability process made me very aware of the perception of illness. People think your IQ plunges if you have a cane, a walker or they find out you are disabled. It is an oxymoron to say "intelligence-disabled professor."
Financial hardship is the easiest to describe; I can't drive so I have no car. However I do have to pay for transportation to and from medical appointments, which on an average are at least once a week. I can't grocery shop, clean, vacuum, do outside chores and for this I have a PA.
During the process of my journey I went from a credit score of 628 to 458 and can't even get a Satellite Dish. I have tried community funds and banks are always very polite and tell to come back when I am solvent. If I am solvent, why do I need the bank?
I can't work at home since I can't maintain a schedule. I can't commit to deadlines with short-term memory loss and I am hard-pressed that anyone would hire me for management for a Health Care Facility while on medications for depression, which is a side effect of domestic violence and multiple sclerosis.
What I would like is a grant to upgrade my computer and electronics, my desk and a chair so I can sit in for more than ten minutes, and to purchase new software programs.
I would like to include in the grant a provision for personal debt and pay forward my rent and utilities so I could actually start a savings plan and finish my book.
I am passionate about my book. It is my avocation to write and distribute this book to medical schools as a course curriculum. The way we communicate with the elderly and disabled is discourteous, but no one every pointed it out to med students and that is where we need to start.
The school systems can get the young people to renew the respect of the elderly in our communities and that they should be revered not penalized for their age.
I have been writing this book, in my head all my life, an unmistakable sequence of events in my life and how these stories can affect others in a positive and empowering manner.
The book is how to deal with adoption (I was born in Ireland); pediatric illness (I had open-heart surgery when I was 6) and the horrific unacceptable conditions and mentality of the Nursing Home Industry.
The Fraud and Abuse (which I fought as an Advocate against Fraud and Abuse throughout my 35 year career in Nursing Homes) in my experience possess two outstanding factors that nobody seems to find disturbing.
One is that never have I ever had a resident come to me and say they couldn't wait to move into a nursing home and why do we promulgate minimum standards of care and operations.
When did minimum become acceptable benchmark for care? If you have a corrupt entity and allow them to start at the minimum standard they will immediately go to the unacceptable; it is their nature.
That is business as usual in my State, Illinois. Corruption in this state is an art form in Healthcare and Politics! And for all of us who are with people everyday, in one form or another that we should be aware and be kind. This nation does not promote kindness and it's FREE!!!
These areas, my book, my advocacy (that I can do on a flex schedule at my home) and it is my hope to leave the world a little better place which constitutes the need for my grant.
I would like to apply for $28,000. A portion of the profit from the book will be donated to organizations promoting community awareness and victim's rights.
I thank you for the opportunity to share my story and hope you can help me in this undertaking and rejuvenate the design of my existence.