A coworker's 13-year-old child was recently diagnosed with Type 1 Diabetes. This discovery will change the child's life, as well as the family's, for the foreseeable future.
Learning about this caused me to reflect on my own experience at that age; one that I haven't shared with many people, for no other reason than its impact on my life has drastically diminished since I reached adulthood. But perhaps that in itself can be reassuring to my coworker and her kid -- that after awhile, it just becomes a part of life that you don't even think about.
I'm sure everyone remembers the annual or semi-annual elementary school health screenings. Vision, hearing, lice (ew), scoliosis. Not sure what they're screening for these days. But no doubt everyone remembers "that kid" who had to be pulled out of the classroom a day or two later by the school nurse for re-screening.
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| 7th grade. I had pink glasses then too. |
Having to get re-screened for vision wasn't a big deal. In fact, it was kinda cool to get glasses. At least, I thought so. I got lots of compliments on pink squarish plastic frames that were very stylish in fourth grade. Even my bus driver noticed.
But getting pulled out of class for re-screening of anything else was horrifying. I remember we all got kind of tense and uneasy when the school nurse popped her head in the door. "Whose name is she going to call? Please don't let it be me! Please
don't let it be me!"
"I need to see Emily Cole, please."
NOOOOOOOO!!!!!!!!!
The stares, the whispers (mostly, I suspect, from my fellow classmates vocalizing how happy they were it wasn't them), the teacher restoring order.
That time, I had to be called back for a
scoliosis re-screening. And, oh, I had it alright. Big and bad. After the visit to our family doctor, I was referred to a spinal specialist in Minneapolis. I was 10.
Being a kid and getting diagnosed with a chronic disease is awful. Granted, mine wasn't life-threatening. But it did mean some changes were coming my way. And when you're a kid, it is earth-shaking. The most resounding question in my 10-year-old head was,"WHY ME?!"
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| Not my x-ray, but mine is similar. |
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Turns out I have double-primary idiopathic scoliosis. In layman's terms: two curves in my spine, which looks like a big S. Looking at me, you probably wouldn't know anything was wrong. But upon closer inspection, you might notice that one shoulder is higher than the other, one pants leg hangs lower than the other and that I tend to stand with all my weight on one foot.
This "hidden" disease was the cause for multiple trips to Minneapolis to the spine specialist. I missed school. Was questioned by classmates. And worst of all, I was terrified that I would need to wear a brace. Think
Joan Cusack in Sixteen Candles. The ultimate humiliation.
For awhile, it looked like I wasn't going to need "treatment." My spine was border-line. Each visit to the specialist necessitated x-rays, upon which Dr. Lonstein (who had a fabulous British accent) would draw, using a slide rule and protractor, to determine the severity of the curves and whether they had worsened.
A couple years passed and my spine stayed just inside the safe zone. Until I hit a growth spurt. Then the curves went crazy. "Well, I'm afraid we need to talk about treatment." I was 13. Junior High, where it's torture just trying to act normal enough to fit in and make it through unscathed.
I saw my future flash before my eyes. I was already kind of a nerd. I liked to read and play the flute and paint my nails different colors. And now I was going to have to wear an obnoxious, uncomfortable brace for 23 out of 24 hours each day until I stopped growing. Any shred of social acceptance I had earned for myself would surely be dashed the day I returned to school.
But ---- what's this? There's an alternative to a brace? A new experimental technology called Electro Spinal Orthosis, or ESO for short? And this meant no brace??? SIGN ME UP!
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| Like this, but on the right side only |
And, seeing me on the verge of tears at the idea of wearing a brace, my parents did sign me up. An ESO was basically an electrode muscle contractor. Yes, not unlike those silly "workout your abs without doing a single sit-up" contraptions. Two electrodes were positioned on my back and would contract the muscles at intervals, essentially pushing my spine over and, in theory, preventing the curves from worsening. Since most adolescent growing happens during sleep, the thought was that the muscle contractions / spinal correction would also be most effective during sleep.
So, each night, my mom would slap the electrodes on my back, which had long wires that connected to a control box that I would then turn on and attach to the side of my bed. And my back muscles would contract all night long. Every night. For 1,095 days (give or take).
I was allowed to skip a night here and there, for the occasional sleepover. But otherwise, the electrodes accompanied me on family vacations, to long weekends at relatives', everywhere.
I experienced several fitful and sleepless nights at first. And I think I can speak for my mom when I say it took her awhile to get the hang of positioning and attaching the electrodes every night. But eventually, I got used to it and what started out as an ordeal became a 5 minute addition to my sleeping and waking routines.
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| Physical effects of scoliosis |
For me, the treatment was successful. I think the curves maybe worsened a degree or two during that time, but it was considered acceptable. However, ESO was discontinued as a treatment option shortly after I stopped using it. The research had determined that users experienced mixed results and it was not a reliable method of treatment. I'm just glad it worked for me.
As an adult, I suffer from periodic neck, lower back and hip issues, for which I see a chiropractor. I do a lot of back stretches, which have become second nature. I still have a hard time wearing certain styles of dresses, and my pants will never be even at the cuff, which is frustrating. But, all in all, I consider myself pretty healthy.
My "illness" didn't scar me for life. But I do think it gave me a perspective that I wouldn't have had otherwise. And while each person's situation is different and each experience is unique, it is my hope that the similarities can be reassuring in the end. All we can do is experience it, learn from it, live our lives and in the process, try to help others do the same.
