Pain's Impact.Part 1

September has been designated Pain Awareness Month as part of the Decade of Pain Research and Treatment, established by Congress and effective as of January 2001. According to the National Center for Medical Statistics over 70 million Americans report that they experience pain, many living with severe chronic pain, for which effective treatment is limited.  I believe that unless we have lived with chronic pain we cannot understand the impact it can have on a person’s life; which is one reason why Pain Awareness Month is so important.

There are other issues that need to be addressed, including the need for additional research funding, better medical education about pain management, and reasonable policies and laws about the availability of pain medications, however in this and some future Share Posts I am going to discuss what a person in pain experiences on a daily basis; emotionally, physically, and financially.  I am going to start at the beginning, in 1963, when I first started having back pain, and over the next few weeks will cover topics that lead up to the present; I am confident that most of you will identify with what I write and I hope you will feel free to comment.

Having lived with spine and leg pain for over 40 years I believe I can speak to these issues with both knowledge and sensitivity.  Pain is the number one reason why people seek medical care and is why most people leave work and obtain Social Security, and yet so little is known about the physiology of pain and the repercussions it has on a person’s life.  Totally independent of my spine condition, in the mid-90s I was diagnosed with Multiple Sclerosis, a progressive and often disabling condition, which added to my physical limitations and forced me to make the very difficult decision to end my career, one I worked hard to build and enjoyed immensely. 

Since I was a young girl I have lived with pain in my back, although the orthopedists I saw then did not believe that it was as bad as I indicated, in fact over the years I was told everything from it was from growing pains to women can’t handle stress so they get headaches and backaches.  I was once told if I just let go of my stress my pain would go away.  I had a pretty nice life at 13 and wasn’t aware of what stress I was supposed to let go.  Over the years I was hospitalized and put in traction, was prescribed every possible pain medication, to varying degrees of success, wore a partial body cast for several months in my senior year in high school, and for many years wore a back brace with six metal rods that went from the top to bottom, and whenever I bent over to pick something up the rods kept my shirt standing straight up on the top.  No way was I going to get away without anyone knowing I was corseted up like Scarlet in Gone With the Wind.  I have also, over the years, had a total of five surgeries, four of them major surgeries and I now have rods and screws holding my spine stable.

In December 1968, six months before I graduated from my all girls high school, I went upstate on a mandatory religious retreat, from which I had to be driven home early and admitted to the hospital.  Several tests were administered, then the same orthopedist I had been for five years came in and told me I had to have immediate surgery.  He suggested I call my parents and have them come right up so he could explain to themwhat he was going to do and why.  At 17 I was still considered a child and therefore required no explanation.  My parents lived about 5 miles from the hospital and said they would come immediately.  Before they could arrive, however, the doctor came back in my room and told me plans had changed, he was not going to operate and was going to put me in a partial body cast instead.  I tried to find out what had changed in the ten minutes since he told me I needed immediate surgery, but again I required no explanation.

My parents arrived at the hospital to find my bed empty, me missing, and my boyfriend sitting there a little bewildered. He told them that I was taken down to the casting room but he wasn’t sure what that meant; I had called him and told him I was having surgery the next day, too, so he couldn’t figure out what was being ‘casted.’  The three of them found the specified room and walked into what I can only describe as a scene from a bad movie.  I was standing in the middle of the room in only my underpants, heavily medicated and weak from being in bed so long, my arms were loosely tied with gauze bandages to a hook that came down from the ceiling, and the doctor was walking around me wrapping wet casting material around my body from my shoulders to below my hips.  I must have looked like hell and just barely hanging there, and I remember telling the doctor that I felt nauseous; I knew I was going to throw up, although I hadn’t eaten much so I couldn’t imagine what would come out.  I wasn’t aware that my parents and boyfriend arrived and were standing there staring at me, until I heard my father yell,

“What the hell are you doing to my daughter?”

I don’t know if it was his voice or if it was just the timing, but as he said this I began to vomit, just as the doctor wrapped his way around me and was standing right where I began to deliver whatever contents were in my stomach.  He started yelling at me, my father was trying to find out what was going on, I was crying, my mother was still standing there in shock, probably because my boyfriend was seeing me in just my underpants, and my boyfriend was laughing hysterical.  That might have been the sanest reaction, as it had to look ridiculous.  For years he lamented that he did not have a camera with him that day.

A nurse finished applying the cast while the doctor went and cleaned himself up. I went home from the hospital on Christmas Eve, wearing my father’s shirt.  I have four siblings, my brother six years older than me, one sister two years older, one two years younger and one eight years younger, and they all thought this was a real hoot.  I was, in my brother’s words, like a turtle on its back, lay me down and I couldn’t do anything, not even get up.  I thought it was funny for about two hours, until I realized exactly what I couldn't do while in the cast.  I knew the next few months weren’t going to be fun, but it got worse when I went back to school after the holiday.

My mother informed the Sisters that I would not be in uniform, an unforgivable act at the Academy, so I thought all was taken care of. Imagine my surprise, therefore, when the Principle came into my homeroom and informed me that I was out of uniform, which I obviously knew since I was wearing my father’s shirt and was sitting, or should I say leaning, against a slant board because I couldn’t sit up straight.  Trying to keep a straight face I replied very respectfully,

“Yes, I know I am out of uniform, Sister, but my mother had called and informed you that I would be.”

“Informing me of anything does not make it alright.  You know the rules, Ms. Coleman, you must pay a $1 fine for each day you are out of uniform.” 

And so each day that I wore the cast the Principal would come to homeroom and I paid a fine, no excuses accepted.

That was just the beginning of what my life would be like for the next 40 years.   I have experienced a great deal of emotional pain as well as physical, as do most people who live in pain.  I have also had many wonderful experiences in my life and known many wonderful people, I do not mean to sound like I lived a life filled only with pain and disappointment. What greater wonder could I have had than to give life to my daughter and watch her grow into a wonderful young woman?  Life is often what we make of it and I have always tried to stay involved, remain positive and keep a sense of humor. There have, however, been many difficulties as well.

 My physical condition has put obstacles in my way as I worked to obtain my educational and career goals, often having to delay plans for surgery or not being able to fulfill requirements because of pain or treatments.  I have experienced loss of love, friendships, and significant financial loss when I had to leave work and go on disability in 1998.  And as a result of having to end my career I still live with a loss of self-esteem and self-respect, as well as emotions I have experienced at different times during the past 40+ years, including guilt, shame, embarrassment, anger, and frustration over the lack of control I have over so much of my life.

Over a series of Share Posts I plan to discuss these emotional and physical experiences, as well as some of the successes and achievements I have had in spite of my condition. I apologize in advance if they are long, however I am hoping these will highlight how great an impact chronic pain can have on a person’s life, and how sometimes we can overcome the challenges and sometimes it takes more words to do this.

 September is Pain Awareness Month and I can’t think of a better way that I can spread awareness then to tell how pain has affected me, and those around me.  I hope you will enjoy reading these Posts, and I welcome your comments on anything I write; I am sure many of you have had similar experiences that you might want to share.  I still plan to write Posts about other, more timely, topics as they come up because we must remain vigilant about legislative and policy issues that might either benefit or hurt those of us in pain.  

Have a good day!