I have known Lacie since she moved to our area as a teenager years ago. I remember the first time I saw her--a tall willowy girl with red hair so long, she could sit on it. She has grown into a wonderful woman. Yesterday she sent me something about June's designation as National Scoliosis Month. At first I thought it was an article from a magazine. But it wasn't.
Yesterday I learned something I didn't know about my lovely young friend. She had written the words which had so stirred my heart. I was deeply touched by the power of her story. The sheer bravery of her life is an inspiration. I wanted to share her thoughts with you. I know you will be as inspired as I was.
I've learned to use it as a sort of party trick. I get a glimmer in my eye and I ask "Have you seen my hump?" Some people look at me like things are about to get inappropriate until I turn around, hang my arms to the floor and bend over. Then I get a mixture of "Ewwwwwww!" or "Whooooaaaaaaa." or "What the heck?" as they catch a glimpse of my Quasimodo-like ribcage. It's only uneven on one side, from the back. My right side peaks up much higher than the left, making things most people take for granted, like situps on a hard surface, impossible. I also can't sit comfortably in flat backed chairs or church pews. Even office chairs eventually become uncomfortable if I have to sit for long enough.
In the front it is the opposite, though not as noticeably. My left side pokes out to the front a little more than normal and rounds out in a bit of a deformed way. Sometimes I get self conscious about it, but then I realize people are more likely to notice how blinded they are by my pale redheaded skin than they are to notice (as my good friend Heidi likes to call her extra curves) my "lovely lady lumps".
I am generally a very cheery person, and I prefer to be the happy, loud and bright person in the room. I like to brighten the days of those around me and I love to make people laugh. There are days where this doesn't come so naturally for me. I have a lot of good days. Days where maybe I only have muscle soreness or my spasm doesn't act up or I get to sit comfortably most of the time I'm sitting. I also have bad days. It's something people with scoliosis have learned to deal with, something we've learned to make our own. Much like any other sufferer of chronic pain, we have our own coping mechanisms whether it's muttering curse words under our breath when a spasm hits or cherishing the funny looks as we stretch and move to ease the joint and muscle pain anywhere at anytime. A lot of my bad days are very bearable thanks to ibuprofen, a good cup of tea, and lovely conversations with others who suffer from back pain. I think companionship and understanding are so important when it comes to back pain, there's just nothing better than someone saying "I know, right?" when you know they actually do know.
Scoliosis is something that a lot of people still don't understand. It's not easy to explain pain when it isn't a physically observable thing for most people around you. Some days, when I have a smile on my face or I'm out on a run, I'm feeling every step in my spine and the muscles that surround it. Some days I can't help but tear up a little because I'm just so tired of being in pain. The last time I saw a spine specialist (after he lost my x-rays and had no idea of the progress of my condition) he simply said "I'd like to try posture correction." I wanted to yell at him "I'm A BALLERINA! I've been using posture correction since before I was diagnosed with this!"
Now, don't get me wrong. I'm grateful to be the happy, healthy person my environment and my body have allowed me to be. This is nothing compared to what a lot of people go through every day. I simply wish there was more research being done, more treatment ideas and more acceptance of alternative treatments in the scoliosis world. I would love to know that if I have kids and end up passing this along to my kids there will be something I can do to make sure they don't feel stuck in a body years older than they are.
I'm doing my best to maintain an active lifestyle, to maintain a healthy weight because I've learned that every extra pound means struggling a little more. I take supplements to strengthen my bones, lubricate my joints, and reduce inflammation. I stretch, massage, move and work out my muscles so that I can avoid being stiff and frozen for as long as possible.
Please, be patient if you know someone with scoliosis. We have our grumpy days, but know that it's not you, it's not anything you have control over and really the reason isn't anything we have much control over either. Offer a back massage, a shoulder massage, or uninterrupted bath time. Dating or married to someone with scoliosis? Learn to cue in to ways of dealing with the pain. The smallest things mean so much.
Happy Scoliosis month to all my twisted sisters (and brothers!) And to everyone working to further research and treatment!
~Lacie Rae Wallace
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