I was a returning student after years in corporate life. I sensed that my career felt empty and I wanted to do something with more meaning so I went to graduate school to study counseling, rehabilitation counseling to be specific. This is a field working with individuals who were born with disabilities or who have acquired disabilities. The truth was I was a poor student in the late 60’s and early 70’s during the Viet Nam war. I was much more interested in demonstrating against the war and taking part in happenings than attending classes. I was an art and theatre student and worked in the theatre, and my gpa was not great. When I applied for social work school the only schools that would accept me I couldn’t afford. This opportunity came up at the last minute and the price was right. It seemed to fit my needs and I jumped at the opportunity, although I knew few individuals with disabilities and less about the disability rights movement.
I had some good professors. My first semester, my professor, the head of the department was able to connect the disability rights movement to the gay rights movement and the women’s rights movement-areas where I had much more experience. I learned how people with disabilities had been infantilized or put on pedestals or locked away and out of sight. I learned about the hard not-yet-won-fight for disability rights and the toothless Americans with Disabilities Act. This made my angry, in an abstract way; in the same way that I don’t like any group of people singled out and oppressed for what they look like and how they behave.
In Medical aspects of disabilities I learned about how certain disabilities actually affect functioning. I was shocked. I never thought about how the spinal cord really connected the brain to all the intimate functions of the body. If I really took the time to think about it, perhaps I would have figured it out, but I just didn’t. I was laid out for me in charts and diagrams. I had to take tests, answering questions about what an injury at C3-4 would impact re: function. All abstract, but sinking in.
Then I had a wonderful course by a woman professor who became a paraplegic who became injured on her way to an anti-Viet-Nam war demonstration. She taught through readings and films and through her own personal experience and her class had the greatest impact on me. She really drove home everything we had been learning. She still is teaching me by the books she has written since I have taken the class. Still, this was all theoretical.
My program was a two year master’s degree which I was doing in four because I was working at the same time. At the beginning of my second semester of my second year, I woke up one morning with a backache. Where I worked I had a choice of three health plans. I chose the most inexpensive because I was going to school without any financial aid and I was in good health. After about a week of steady pain, I went to my HMO doctor, an old fashioned woman. I was lucky to find her. She prescribed physical therapy, Naprosyn a non steroidal anti-inflammatory and a CT scan. I went to PT worked, did my practicum (kind of a pre-internship) and went to school two nights a week that winter and my back got progressively worse. I got to a point where I had a friend buying my groceries and walking a block and a half left me in sweating, nauseous, doubled over pain. Once I went to the restaurant we went to for lunch at work, and by the time I got there, I was unable to eat what I ordered-rarely a problem for me. I have never felt pain this severe before or since. Sick pain.
My PCP referred me to an hmo neurologist who did an exam then prescribes extra strength Vicodin, which barely touched my pain. He suggested to my PCP that I would eventually need surgery, but I was not told.
I continued my schedule. I had a professor for my practicum who was ageing and may have had Alzheimer’s disease. It was never clear, but she had a reputation for singling our one student to dislike and that semester, I was it. Fortunately, my practicum site liked me and invited me back for my internship.
Finally, my PCP referred my to an HMO Orthopedic Surgeon. I’ll refer them to the Practice of Drs. Harry, Curly and Mo. Harry because of his bad toupee being the back guy prescribed a series of 3 epidural injections, with bed rest in-between. It was great to have a week off and the epidural weren’t bad-kind of like a spinal tap. They take a large bore needle and inject medication under the dura layer of the spinal cord. This did not work. The next trick was steroids by mouth. This was very difficult and may have been the bleeding ulcer period because I felt very ill.
Finally, I woke up one day feeling even worse. It was a practicum day. I went in, but felt so bad, I left early. I took a nap, but when I woke up, the pain was magically gone. I stood up, and my knees buckled. I was able to actually get up and walk. The next day I had saw the shoulder Dr. who scheduled surgery for two weeks forward. I wonder why now. I went to sleep that night and woke up the next morning having been incontinent in the night. No-one had warned my of the symptoms, but working in the rehab. I visited the library and read about back injuries. I recognized this as a bad sign. I called the shoulder Dr., the back Dr. still being out of town. He was able to get a doctor who was recommended by my PT-a real doctor.
After that, things speeded up. My very supportive partner took me by cab to the emergency center of the Hospital for Joint Diseases. The surgeon was coming in from wherever. The surgery department was closed on Saturdays so they had to assemble various staff. I had a ct scan and discogram and various tests and finally had surgery that evening. I first had to have four units of blood because my blood count was dangerously low. It was that bleeding ulcer from those NSAIDS.
The day after surgery was Sunday. I was able to take things in. I thought I was going to finally get better. Little did I know! Monday, a urologist showed up to do a test-apparently to see if I could pee on my own. The answer was no. Hmmm.
The next major test to appear was an EMG, a test I wouldn’t wish on anyone. I was taken to an under heated room. A Phillipina nurse had just given me or tried to give me an enema-with no result. I tried to communicate this to the neurologist who did not seem to care whether there was about to be shit all over his sensitive equipment. The neurologist proceeded to insert needles in both of my legs, primarily the bony parts, the shins, the ankles, the feet-then send electrical stimulation through them to see what registered on him machine. Not much, apparently. It took at least an hour and could have been mistaken for torture from the medieval times. Then the neurologist left the room, and a female cohort entered and placed an electrode over my genitals and I thought “here we go” But, nothing.
Shortly, the neurologist re-entered the room and said, “you are permanently disabled.” He was short on bedside manner. I said “what do I do now.?” He had no answer. English was not his primary language and he probably should have left that kind of news to someone else.
I was wheeled back to my room. Unable to shit or pee for myself. Unable to stand without looking like a junkie on a nod. Unable to walk without a wheeled walker. Unable to feel my genitals! I had the lowest moment of the entire event..
I stayed in the hospital for two weeks. I had some PT. They taught me to walk with a cane, shakily. I still have problems with proprioception 12 years later and can fall down easily, and I do. I learned how to self catheterize, although they taught me with the hospital equipment which involved laying down and using a mirror which is not very handy for work. Later on I found a woman urologist who gave me with the right kind of catheters and I learned to do it over a toilet and eventually learned to do without. I still can’t predict when I have to go to the bathroom by feeling, but have to depend on a schedule and diarrhea really can ruin my day or week! Sexuality is entirely different for me as I have no feeling in my genitals.
I belong to a support group online, the Cauda Equina Support Group. There are many of us, but we are spread out and by the nature of our disability, we don’t elaborate on the details. But we have a lot of fun when we talk online and a there’s lot of rowdy humor. There are many ways to acquire this disability including a mistake while having anesthesia while giving birth
I have a hidden disability. I walk with a cane only outdoors. Inside I’m fine unless the lights are out or my eyes are closed. It irks me when someone says “you don’t need that cane.” I have a disability that has changed my life in significant ways. My disability takes up time that I used to have for other things. I spend money on it that I used to have for other things. It has changed my relationship in significant ways. It has changed the way I see the world.
Cauda Equina Support Group
http://www.caudaequina.org/
Cauda Equina Information
http://www.oldcity.org.uk/cauda_equina/index.php
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