Note: The following is a revised version of a letter I sent to Rep. Dave Obey and Sens. Russ Feingold and Herb Kohl on June 9, 2009, and was originally posted on my old blog

June 9, 2009

Dear Rep. Obey, Sen. Feingold & Sen. Kohl:

Four years ago today, I was released from the hospital after a three-month stay. No one is entirely sure what happened, but I had a severe injury to my brain stem and spinal cord at the C4 level, possibly due to complications of hydrocephalus and Dandy-Walker Syndrome (DWS). I became paralyzed from the neck down and my vocal cords were paralyzed, leaving me unable to speak or swallow.

Beginning at Marshfield Clinic/St. Joseph’s Hospital in Marshfield, WI, I had a very difficult hospitalization. I went into respiratory arrest twice and spent nearly six weeks on a ventilator. I developed cardiomyopathy, blood clots, a subdural hematoma, pneumonia and other infections. The cardiomyopathy eventually resolved itself so I didn’t need a pacemaker, but as a result of the hydrocephalus/DWS, I had to be re-shunted for the second time in four years. I had countless other procedures.

I was at Marshfield from March 2, 2005 to April 11, 2005. At that time, I was a complete quadriplegic and was transferred to the spinal cord rehab unit at Froedtert Hospital in Milwaukee. I spent two months at Froedtert, with some of the most talented and dedicated health professionals you will ever meet. They called me a miracle, but they are truly the miracle workers. When I arrived at Froedtert, every single one of my doctors expected me to be a quadriplegic for the rest of my life. With the help of an amazing physical therapist and the support of the entire rehab team (nurses, therapists, doctors), I was walking about fifty feet with a walker by the time I left on June 9, 2005.

I’ve had a rough road since then. I had a year of outpatient physical therapy, as well as five months aquatic therapy and six months of occupational therapy. With natural healing and a collagen injection, my vocal cords healed (for the most part) and I can now speak and swallow. I have regained my mobility and can walk, talk and use my hands and arms normally. I look and act completely normal but I still have numerous health problems, including:

• headaches
• neck pain
• fatigue
• depression
• post traumatic stress
• multiple pain issues

I was a full-time student at the time of my injury and was not working. As a result of my income level, I was eligible for SSI and Medicaid. I have not been able to return to work since I left the hospital and I have been on SSI/Medicaid since April 2005. It’s taken me a long time to start to get back on my feet. I may never work a traditional 40 hour/week job again.

After four years, I have finally found work that is realistic in terms of my physical challenges and may help me get off SSI/Medicaid. I am pursuing work as a freelance writer which is something I can do even when I’m too sick to get out of bed, thanks to my laptop, telephone and the Internet. It will take me a while to earn enough money to get off disability. Getting off disability will require two things:

1. Making enough money to live on
2. Being able to afford health insurance

Health insurance is key. With my health problems, I cannot afford to go without insurance. I take twelve prescription and four non-prescription drugs daily and have multiple doctors’ appointments every month. I am returning to physical therapy to tweak some upper body issues.

I want to get off disability very, very badly. I am horribly ashamed that I collect a government check every month. I need your help. As it stands, I simply cannot afford private health insurance and I don’t see that being a possibility any time soon.

I have heard that a “public option” health insurance plan would sharply lower costs for people like me. If that is the case, please put everything you have into making sure it is a part of the health care reform bill.

My future depends on it.

Sincerely,
Danine Spencer