I have made my disability into a capability: Part 1 of 3

Contributed by: Dana Morningstar
Reviewed by: Evelyn Corsini, MSW, July, 2011

Dana is a 36 year old woman who lives in Georgia with her husband and their adopted baby boy. She has several medical conditions and has lived with chronic pain since she was a young child. In spite of these problems, Dana completed college and nursing training. Her personal story is presented in three parts.  It describes how she did not let her pain and disabilities stop her from setting and achieving her goals.
This is part one.

My childhood with pain

I think people wonder how I didn’t become totally dependent on my parents and not even go to college at all, or even become totally dependent on my husband after my health became so much worse when we got together, or how I had enough strength to go to college, set goals, become a professional, get married, and plan for a future with a family. I did all of this without dissolving into a pit of self-pity, without staying in bed with the covers over my head, without becoming totally dependent on anyone.

I had a fairly normal childhood. I went to a Catholic grade school, followed by a Catholic all-girl high school. I went to Homecomings, Fall Festivals, and Junior and Senior Prom.  I played sports, went to dance school, was in school plays, and was a part of all the extra-curricular activities that I could possibly fit into my schedule.  I had dreams that I was going to get married someday and have a family with lots of kids. I always wanted to go to a university. When I was young, I didn’t know if I wanted to be a journalist/writer, a teacher, or a nurse. They all seemed so appealing. I always had a passion for writing, but I was pulled toward helping others. If I was a teacher or a nurse, I could help people. So, when it finally came down to picking a university, I decided if I go to nursing school, I could help people to feel better and could still educate others, and well, writing could be a passion of mine in my spare time as a hobby.

So how did it all begin? The chronic pain is what I’m referring to. I might as well just get it out in the open. It’s been there since I was a child, and I’ve learned to live with it, to see it as a part of life, a part of each day and night. It is not an easy thing to deal with, and I don’t get used to it by any means, but I learn to live with it. I learn to share my life with it. In a sense, it’s a compromise.

I was born two months premature and otherwise healthy as far as the doctors knew. I was 4 lbs. 11 oz. I had a full head of dark black hair. I screamed and cried all the time, which I guess they thought was because I was colicky. All my baby pictures are of my eyes squinty and my mouth wide open screaming, tears running down my cheeks, and my face bright red. Fast-forward to when I was 11 months old. My cousin was a couple months older. She had been walking for a while. I wasn’t even pulling up on anything. I was, however speaking in full sentences!  So, I was extremely late to walk. Also, I could not do things with my fine motor skills very well. I was unable to flush the toilet or turn the doorknobs until I was five years old.  Now, I’m not sure if we can prove that any of this has to do with the fact that I was already experiencing chronic joint pain or not. Back then they didn’t really have the expertise to figure that out yet. My mom did put me into dance class at a very early age, 2 or 3, to help with my motor skills and to build my muscle strength and balance.  It was probably the smartest and best thing she ever did for me.

I do know for a fact that when I was ten years old, the pain started, but it was a different kind of pain that I struggled with then. I began having migraines at this very early age. I would have auras of flashing lights and a tunnel-like sensation a couple days in advance. Then the headache would begin on one side of my head. My eyebrow on the right side would begin to droop, and the right eyelid would sag. The right side of my lip would begin to drag, and I would lose feeling in the entire right side of my face. Slowly the right side of my body would begin to lose feeling, and then go numb as it worked its way down from my shoulder, arm, hand, leg, and then finally my foot. It would last about 72 hours. I was diagnosed with complex hemiplegic migraines at age 10.

I was unable to miss school because it would be too much work to make up, so my mom would drop me off late to school on those days with the light and sound-aggravated pain. She would watch me as I walked down the hall to the principal’s office. I would take a step with my left leg and then drag my right leg alongside it, take a step, then drag, etc. All day long at school I would have to endure the pain and the loss of mobility and feeling on my right side. I also would have to write and do everything with my left hand because I had no use of my right hand. Up until I was ten years old, I had favored my right hand.  Doctors did tests to rule out a blood clot, an aneurysm, multiple sclerosis, and strokes. All were negative. I was just lucky to be having these complex hemiplegic migraines.

Interestingly enough, during my grade school years, I was dancing professionally with different ballet companies in Missouri. I was in “The Nutcracker Suite” and traveled with “The Nutcracker on Tour.” This is when I began to have different joint pains.  I would have vague wrist, ankle, elbow, and knee pain. The worst pain and problems were my hips though. They would always feel like they were out of place or popping. They would ache, and I would always find myself on the floor trying to relieve the pain with certain positions. I also had issues with my shoulders, which were not as bad as my hips, but included popping, feelings of displacement, aching and pain from the front to the back. Everything that I did to help the pain wasn’t because I was taking the advice of anyone in the medical field. I just tried anything to relieve the pain. Anytime I said anything about the pain, I was told by doctors, dance instructors, and my parents that it was just from all the practice. I probably strained something or pulled something or was just working too hard. No one thought it could possibly be anything THAT serious.

I always had problems with getting sick. My doctor told me when I was still in grade school that I shouldn’t go to slumber parties because my immune system wasn’t like all of my friends’.  Every time I would stay overnight at a friend’s house, I would end up achy, feverish, and fatigued. As a matter of fact, I still use that feeling to explain my flares nowadays. I call them “slumber party hangovers.”  I soon realized that the lack of sleep, being so close to my friends while we slept, and sharing snacks and drinks and stuff, would make me sick every time. I was always unable to take P.E. because my spleen was enlarged. And on top of all the flu-like symptoms, I also continued to have the awful migraines.

I went to high school, and although I was sick a lot, overall my four years there were not too bad.  I had some unexplained fevers and general malaise. I had mononucleosis my sophomore year and missed some school. I had a hard time feeling normal again. I was fatigued and so tired all the time. I would come home from school and just want to sleep.  I kept busy though, and I kept my grades up.  I began to have stomach problems in high school which I thought was because of stress. I was taking a lot of college credit classes and involved in so many extra-curricular activities, so I figured it had to be stress.  I made sure to take a lot of science classes and writing classes as well to keep my options open for college.

By the time I was a junior in high school I knew for sure that I wanted to be a nurse, and that was the direction that I was headed. I was glad that I kept up with the writing classes though because they helped with my creative side. I really enjoyed writing, and I knew that part of me would never die. When I graduated number 8 from my small Catholic girl’s high school in 1993, I won the science award for taking the most credits in science in four years of high school. I had been in the National Honor Society my entire time in high school, and managed to be the editor of our literary magazine, a cheerleader, in the Drama Club, the CARE Club, the secretary/treasurer for Students Against Drunk Driving, and a tutor in French and Math. Outside of school, I was still dancing at a professional studio and volunteering at a nursing home and at a place that made sure that when newborns were sent home from the hospital they were getting the proper laboratory tests done, and being formula fed or breast fed properly.

 

Dana maintains a blog (gavertarm2bambidextrous.blogspot.com) and hosts an online radio show (www.blogtalkradio.com/danamorningstar).

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