When I was 12 years old, a boy in school who had a crush on me pulled my chair out from under me to get my attention. I landed hard on my tailbone. The pain in my lower spine started right away. My mother took me to our family doctor who delivered my first misdiagnosis. It took 33 years to get the correct diagnosis.
The pain in my spine was always intermittent, depending on what I did. By the last two years of high school, sitting had become very painful. During assemblies in the auditorium, I sat in folding chairs in aisles instead of in the curved seats that my back couldn’t tolerate.
By my late 20s, I also had trouble standing for any length of time. I could not fully participate in social events because I could neither sit nor stand with my friends for any length of time. When I started college at 34, I needed a special chair that I pushed to classes in the building where I kept the chair. The chair was an old rocker with the rockers cut off. It had wheels on it and a bar across the back for pushing. When I sat in it, my knees were higher than my hips. I felt much less pain when sitting with my knees higher than my hips.
For classes in other buildings, I sat on one seat with my feet on another seat or sat on the floor against a wall. I used a back support pillow wherever I sat. For one class, I lay on the floor. Instead of carrying a backpack, I bought a used piece of carry on luggage and pulled it around on a small luggage cart. The office that worked with disabled people did everything it could to make attending college as comfortable for me as possible.
The world outside the university was far less accommodating. My father was dead and my mother and siblings were not the least bit accommodating. My mother’s response to my back problems was, “Everyone has back problems.” One of the few times my older sister was willing to talk about the pain in my back she asked me, “Are you sure it isn’t emotional?” I told my sister that if I fastened a belt too tightly, my spine hurt. If I loosened the belt, the pain went away. I asked her how that could be emotional. She said, “I don’t know…”, but still felt that my pain must be emotional. Because my mother had tried to kill me when I was very young, she taught my siblings to ignore what I said and discount what I did. My older sister was determined to ignore what I said no matter what the evidence was.
My second sister decided that for me “long term solutions” meant that I should stop being irresponsible and go out and get a job. She told me that going to school was harder on my back than working at a job would be. She didn’t bother to ask me about my experiences going to school because she wasn’t about to pay attention to anything I said.
All of my sisters provide examples of how my family discounted what I did. While visiting each of these sisters, I lay on the floors of their living rooms, trying to ease pain in my hips. My third sister shared a bedroom with my daughter and me one night when we went to my first brother’s wedding. The room had a sofa bed for two. I told my sister she could sleep on the sofa bed with my daughter because sleeping on it would leave me in pain. I slept on the floor. All of my sisters discounted my actions to relieve my pain as evidence that I could have trouble earning money.
I was always in more pain around my siblings because I sat and stood normally when I was with them. I mostly saw them only every two or three years for two or three days. When I socialized with my friends, I did not sit or stand normally. I would sit on the floor leaning against something or walk in circles around a standing group or pace back and forth near a seated group. I saw my friends more often so I had other opportunities to talk to them if I couldn’t sit or stand near them at a social event.
But I saw my siblings so seldom that I sat normally with them and stood in place leaning against something instead of pacing. Still hopeful that they would eventually treat me like a member of their family, I tried to have as much interaction with them as possible. But the pain would become intense and I would have to deal with it, often by laying on the floor.
After my husband died, my parents-in-law would give us food when they could. My father-in-law occasionally decided to teach me a lesson in responsibility by refusing to help me get heavy boxes of food into the trunk of my car.
A woman who once told me she believed in me and who had seen my sitting and standing difficulties once demanded, “Go out and get a job!”
Without asking me, a well-meaning friend lined up a job for me at a small organization. The job was clerical/secretarial. It meant sitting normally at a desk with a typewriter or computer and answering the phone. I would have been able to sit at the desk for only a short period of time before the pain started. Then I would have had to walk around or lie on the floor to ease the pain. When I told my friend I couldn’t take the job, she became angry.
In my 30s, an orthopedic surgeon who delivered yet another misdiagnosis sent me to a physical therapist to take the functionality test for Social Security disability payments. I told the physical therapist about the boy pulling the chair out from under me at school. I told her that the pain was not bad at first so I just kept doing everything. I told her that the pain continually increased so I had to stop doing all kinds of things to limit the pain. When the physical therapist explained what I had to do for the test I burst into tears, knowing the test would leave me in agony. The physical therapist decided I was “hostile” to her. She told me that if I just kept doing what hurt the pain would go away because my pain was emotional. Her misdiagnosis denied me disability payments.
Going to chiropractors would ease the pain but not stop it. One chiropractor figured out that I felt pain when I put weight on my spine. Sitting and standing normally put weight on my spine. Carrying anything put weight on my spine. This sympathetic chiropractor tried to save me from having to work at jobs that would be harmful to my back when I applied for food stamps and medical assistance. One of the women in charge of determining food stamp eligibility also had back problems. She told me, “I know back pain” and informed me that she expected me to find a 20 hour a week job. I didn’t because I couldn’t.
The sympathetic chiropractor sent me for x-rays. The x-rays showed my spine had no S curve in it.
Because my income was low my bills were high. I had to charge smaller bills to my credit card so I could pay my mortgage. I contacted a financial aid counselor for help. I explained about my back and my difficulty earning money. I asked her if there were a way I could get the interest on my credit cards reduced. She responded, “Why don’t you just stop using your credit cards?” I wrote her a letter and told her that telling me to stop using my credit cards was telling me to become homeless.
Because I had difficulty earning money and because I could not get disability, I asked for help when I was desperate. Sometimes the people I asked were not appropriate to ask, but no one appropriate was available to ask. Many people said, “No.” Enough people said yes that I am still alive. If everyone had said no, I would be dead. I am alive also because of my daughter. When she was 10 years, my daughter got her first babysitting job. With her babysitting earnings and then with earnings from fast food jobs, my daughter helped to buy food and pay bills. Because my teenage daughter worked as many hours as she could, we managed to avoid homelessness.
In the 33rd year of my pain, I started carrying a cane with me when I went to public places. I didn’t need it for walking. I needed it to lean on if I couldn’t stand near something to lean against. By then, standing normally for two minutes would leave me in excruciating pain. The only pain free way for me to sit that year was on a low chair with my feet on a stool so they were level with my head.
I received the correct diagnosis for my injury from a nurse in an audience for a talk I gave to a business women’s group. I had to lean against a tall stool to do the talk, so I explained my back injury. I asked everyone in the audience to tell any children in their lives to never pull a chair out from under anyone. The sympathetic chiropractor had told me that some people are instantly paralyzed.
The nurse told me that when I hit the floor, my spinal cord tensed up. Her husband was a chiropractor who used a little known technique called Neural Organizational Technique (NOT). He told me that the tension in my spinal cord pulled my pelvis out of place. My out of place pelvis pulled my hips out of place. The chiropractor used NOT on me and ended 33 years of pain in my spine. The pain in my spine ended with the first NOT treatment, but then I felt new pain.
Releasing the tension in my spinal cord moved my pelvis back into place. It had taken 33 years to get pulled out of place as far as it was. It moved back into place within an hour. All of the muscles in my back from my shoulders to my hips suddenly had to function differently. I still feel pain in all of those muscles, and my hips still shift out of place easily. Out of place hips are very painful.
I had to move back into employment slowly because sitting and standing normally now made my muscles hurt. It was far less crippling pain than the pain in my spine, but it was still pain.
I did a lot of temporary work. To ease the pain in my muscles, I would figure out creative ways to get work done. On one temporary job, my coworkers listened to what I told them about my back, watched how I accomplished my task, then said, “This is the way we do it. It’s easy.”
On another job, I needed to wear a shoulder wrap filled with seeds to ease the pain from typing on a keyboard at the wrong height. I put it in a plastic bag to warm it up in the lunchroom microwave. One woman complained that it smelled and that she did not want hair in her food. Management made me bring my own microwave and put it in a warehouse. My breaks consisted entirely of walking back to the warehouse to warm up my shoulder wrap. And the woman who sat closest to me told me she never smelled anything. She also didn’t think hair could get into anyone’s food when the shoulder wrap was inside a plastic bag.
When I visited a dentist I told him I had to make small monthly payments because I had trouble earning money. My payments were $5 because my weekly food budget was $40 for my daughter and me. If I paid any more money to the dentist, I would have had to buy less food for my daughter and me. Two members of the dentist’s staff continually let me know that I should be making bigger payments no matter what.
The long series of misdiagnoses prevented me from getting the treatment that would have enabled me to earn money. Difficulty earning money meant difficulty paying bills. The clinic where the orthopedic surgeon and the physical therapist worked sent me a letter informing me that if I came in again for any kind of treatment, I would have to pay $50 up front. I transferred my files elsewhere.
Because of the pain I feel, I can work in my yard and garden only half an hour a day. If I do more than that I have to take a soaking bath to ease the pain. Half an hour is not enough time to keep my yard and garden looking neat. Shoveling snow, vacuuming, and mopping also require soaking baths. People do not look at my house and yard and think, “Oh, she must be in pain.” No, they look at my house and my yard and think “She’s a slob.” One of my brothers-in-law once said to my face, “You’re a slob.”
Of course, there are people who say they have back pain who do not have back pain. If you meet someone who complains they cannot work because of the pain in their spine, ask them what they do for fun. People who have real back pain can neither work much nor play much. I haven’t been to a movie theater in years because I spend the entire movie in pain. I have lain on the floor at concerts. I have leaned against walls at religious services. If someone says they cannot work but can do anything for fun, they probably are faking the back pain. Anyone who can do little for fun is in pain.
Any action you take towards another person is an invitation for other people to take the same action toward you. Unless you have a written guarantee that you will never be disabled, you may want to make sure you accept disability for what it is. A disability is a physical or mental or psychological condition that forces an individual to function differently from the way abled people function. Please accept our different ways of functioning.
I wore a Therall back support for a few years until I accidentally discovered how to strengthen my lower back muscles. The Therall eased my pain but didn’t strengthen my muscles. In anticipation of fitting back into my thinner clothes after finding a way to end water retention (see below), I started doing muscle toning exercises. One of the exercises was the bridge. The more I did the bridge, the easier standing without the Therall became. I no longer where the Therall. I do 5 counts of the basic bridge exercise every day without any variation. I still live with pain in my muscles from my shoulders to my hips. I still wear the shoulder wrap when I am on my computer. I also wear it when I drive more than 30 miles. I provide more details about my back on the Tragedies & Triumphs page of my website.
Paula M. Kramer
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