Stories on Curt's Human Disease Website

Name of the Disease: Scheuermann's Disease

Author: Kevin Thurlkill

Story Submitted October, 2004

Kevin's Story:
Hey Curt,

I gained strength and insight from the stories on your website.  Are there any suggestions you can give me to help in this process?
 
Here is my story:
 When I was around 14 years old I began to experience severe back pain during that summer break from school. The physical aspect of the pain was soon accompanied by the visual appearance of poor posture. I remember my Mother telling me that, “if you don’t hold your shoulders up, you’ll have a hump in your back!” So, began years of thinking that the pain I was experiencing and my poor posture was my entire fault.
 
That summer my brother and I were involved in mowing the lawns of various neighbors and relatives to make some spending money. One vivid memory I have is trying to get out of bed that summer. After a mostly sleepless night because of the pain, I would hear my Mother shouting for me to get out of bed. To achieve this feat took a lot of effort and painful movement. After mustering my will, I would first inch one leg over the side of the bed and then the other. With one painful thrust I would hurl my torso upward onto the side of the bed. Now all I had to do was to stand up! The pain at this point was as if someone had a knife in the middle of my back. After a couple of minutes of sitting there another excruciating push and extreme endurance of pain would find me on my feet. I could barely walk for most of the day and would sit and rest mostly until my Dad got home and it was time to load the mowers and go to work. I remember thinking, “how am I going to be able to do this?” But, after all it was my fault for not holding my shoulders up and I trusted my parents to care for me. To complain would only draw attention to what was already my fault! Starting to push that mower was very painful but usually, I guess, from moving about some of the pain would work itself out somewhat and I would experience less pain.
 
During that summer some weeks were better than others, but it was a time of continuous pain in some form. During the most severe bouts I would sneak aspirin to help alleviate the pain. All the while the curvature of my spine was getting worse. There was not a time during the onset of my condition that I was not in pain.
 
After that summer it was time for school to start and the pain had mostly subsided as my spine had stopped reacting to being drastically bent forward. But now was the time for the physiological pain to begin. By this time I had a very rounded back and kids can be cruel. I was called humpback and other names that were very painful to endure. Still in the mindset that this was my fault, I would vow to hold my shoulders up and not be a humpback. But, try as I might, I could not fix what was already deformed. I spent my remaining time through high school mostly wandering the halls alone.
 
Life goes on and childhood traumas become part of who we are. I was a very insecure young adult because of the curve in by back. Frequently someone would make reference to the hump in my back or my posture and this time the knife of pain was in my heart and soul. If only I had been stronger when I was a kid and held my shoulders up, this would have never happened. 
 
In my mid-twenties or so I began to again feel the physical aspects of the condition I had. Any activity I engaged in caused discomfort and pain in my mid and lower back. The thing that had been my fault to begin with was again reminding me how weak I had been. But, I would push through the pain and continue onward. At age 30 I found myself managing a casual restaurant and experiencing chronic pain most days. By now the curvature in my spine was very severe and again even adults would make comments. One day one of my employees said, “you are really getting a humpback!” That was devastating!
All the anguish, all the pain, emotionally and physically, and the self-blame, all my Mother’s warnings, came crashing in on me. I was numb. I don’t remember how I responded. But a few days later I found myself thumbing through the yellow pages under back pain and then to orthopedic surgeons.
 
At age 30 I was diagnosed with Scheuremann’s Disease. It took a lot of strength to enter that office and expose what was clearly my fault in the first place. I was scared! When the diagnosis was made another realm of emotions were released. “Your condition started when you were an adolescent.” This was followed by a description of the disorder the pain associated with it. “If this had been caught during the onset you could have been fitted with a brace and avoided the permanent curvature of your spine.” “There is nothing that can be done now, surgery is very risky and there is chance you might not walk again.”
 
Talk about emotions! This WAS NOT my fault! But, if it wasn’t my fault, whose fault was it? MY PARENTS! For years I’ve had to deal with anger for the poor care I received from them. How could they have not known something was wrong with my back? So now, it wasn’t my fault, but it was still something I had to live with. My doctor prescribed 6 weeks of physical therapy that help loosen my vertebra. Then sent me on my way with some daily stretching exercises to help with the pain and curvature.
 
Over the next 10 years there were good days and bad days. Still there were days when back pain greatly limited my abilities to function adequately. Certainly, there was still a noticeable curvature in my spine that someone would still occasionally point out. But as before, I would push through the pain and anguish and continue onward. 
 
At 40 years old I was working for a meeting planner and doing a lot of computer work. I began to experience severe neck and back pain after only a short time at work. It’s a lot easier to push through pain when you are mid-twenties or mid- thirties compared to being 40. Even during the preparation of this history my back is hurting and my neck is becoming more and more stiff. 
 
For years I had considered seeing a chiropractor. Now was the time to face my fear of this, the embarrassment of this, and take the plunge. Again, my back was examined, x-rays were taken, questions were asked, and all the old wounds were reopened. “Didn’t your parents take you to a doctor?” “Couldn’t they see you were in pain?” “This all could have been avoided!” After all that a regiment of chiropractic adjustments was prescribed. The main benefit is in a somewhat less curvatur e of my spine and neck pain. I go for adjustments on a regular basis just to keep my vertebra as flexible as they can be. 
 
A year and a half ago I decided that I would apply for disability for my condition. I was 43 then and now facing my 45th birthday in July. My claim was rejected and I have since found out that most initial claims are rejected. Not knowing the system, I thought, “This is just something I have to endure.”
 
My activities now are very restricted now. Any activity whether it involves walking, sitting, or lifting results in back and neck pain. I have an appointment next week to again start the process of acquiring disability. This time I am prepared to fight for it and have already contacted a lawyer to help with the process.
 
I have dealt with the issues of not having parents that responded to the obvious pain I was in. I don’t dwell on the fact that most of my youth was taken from me because of what I was going through. To not be angry does not mean that you still don’t remember though.  I still have a pronounced “kyphosis” the medical word for a hump in my back. I still battle with insecurities because of that, especially if I have to appear before a crowd, or just shopping or going to the beach. There is few nights that I get restful nights sleep. Usually, I toss and turn trying to find a position that doesn’t start to hurt after a few minutes.  But through an excellent spiritual connection with the Creator I do my best to cope with it. My motto is, “everything happens for a reason!”

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