December 1, 2008
Dear Fellow Americans: Hello, I’m Jenell Gordon, and I am arguably one of the most unique patients in the world. I am a 43 year old African-American woman who lives at Lake Taylor Transitional Care Hospital in Norfolk, Virginia. My mission is to revolutionize health care. Once you have read this letter, you will understand why.
After receiving a master’s degree in speech-language pathology from the University of Tennessee in Knoxville, I began completing my required Clinical Fellowship Year (CFY) at Norfolk Public Schools (NPS) in Virginia. During this time, spring 1993, I met with my neurologist to learn what was causing abnormal sensations in my left arm and leg. He ordered MRI pictures of my brain. My suspicions were true. I was diagnosed with an arteriovenous malformation (AVM) in the pons, near the brain stem. A cerebral AVM is a collection of veins and arteries that malformed in the brain cavity. In my case, it was a congenital AVM and removal was highly recommended.
I was fortunate and blessed to meet Dr. Issam Awad at Yale-New Haven Hospital in Connecticut. This neurosurgeon established hope, for me and my parents, by suggesting his surgical procedure for safe removal. I was faced with life or death. I chose life and I am alive after a successful surgery!!!! My craniotomy was January 7, 1997. I was 31 years old. Afterwards, however, I was not given the equal opportunity for which this country stands.
My insurance company approved all the diagnostic tests and the brain surgery as well. Then, they demanded I go home to Virginia. They insisted I leave only 9 days after surgery without the intensive and aggressive physical therapy my neurosurgeon prescribed. Through the efforts of my mother and Dr. Awad, I was able to stay and receive care a little longer. My insurance company demanded my transfer from Gaylord Rehabilitation Hospital in Connecticut after only two (2) weeks of care. Just 2 weeks! I was denied the right to recover! My health was jeopardized! I was moved to Sentara Nursing Home in Norfolk, Virginia. It is a nursing facility providing custodial care for the elderly. As a result, at age 43, after almost 12 years, I have the same post-operative deficits. I am a quadriplegic who uses a wheelchair.
I watched the Democratic National Convention in August and I listened carefully. The speakers spoke of the great need for health care that is “high-quality”, “secure” as well as “affordable”. Yet, no one mentioned the need for health care to be appropriate. I believe health care should be appropriate to the patient. There is absolutely nothing appropriate about transferring a patient, who sustained a 9- hour brain surgery, from a rehabilitation hospital to a nursing home (in another state). Obviously, I was placed in the wrong facility. I remained there for 1 year.
My human rights have been violated! An injustice has been committed and I am determined never to give up on my full recovery. My personal relationship with the Lord gives me faith to stay positive. God is working through my parents, my family and my friends to provide love and support for my faith-based life. Even though I am very physically limited, I continue in my profession. Speech-language pathology is still in my heart. The American Speech-Language Hearing Association (ASHA) has given me lifetime membership in my disabled state. I am a different kind of speech-language pathologist. I don’t have many years of clinical practice; I only worked 3½ years for NPS. However, I have many years of life experience as a patient. In fact, I think it makes me unique . . . I am a patient who just happens to be a speech language pathologist. I would like the opportunity to talk to our society.
There are 5 things that I would like to tell society:
In conclusion , I wish to inform you that the National Education Association (NEA) has given lifetime membership to me in my disabled state as well. I feel it is a privilege to educate the community about my condition and my disability. I use a communication board, an augmentative/alternative communication (AAC) device as well as the American Sign Language (ASL) alphabet to communicate my thoughts and feelings. Change is good. I look forward to the change that President-elect Barack Obama speaks of for this country, the United States of America. His ideas, visions, and values are what America needs at this time. Thank you for your time.
Please share my story with legislators and others concerned about the health care system. If you wish to contact me, my email address is jenellgordon@yahoo.com You can reach Mr. and Mrs. Arthur V. Gordon, Jr. (my parents) at 757-424-3060.
God bless you,
Jenell Y. Gordon