When I was a kid and diagnosed with scoliosis, it didn’t mean much to me. Sure, it bothered me deep down. But as long as I didn’t have to wear a brace or look crazy different, I didn’t care. I had to drop out of ballet, gymnastics and some sports as a kid. But I didn’t want to do them much anyway. There were times throughout the years that I was embarrassed because I couldn’t keep up in gym, or I couldn’t rock the same clothes my friends did. I was different enough to notice it, but “normal” enough to hide it with baggy clothes.
I always assumed there was nothing I could do, so I decided that it would never affect me. As an adult, when I had come to terms with who I am, I decided to embrace it. Hell yeah, I was different! Different is awsome! I was arrogant enough to look at my condition as nothing but an obstacle in the way of my own vanity. Who cares if I don’t look like other women? I’m okay with how I look, so there’s no intervention needed, right?
Um, wrong. Shortly after getting married, my husband and I were pregnant with our first child. With that little baby I forgot myself altogether. Not in a sad sort of way, just the way too many women reinvent their whole lives to be about their child, and forget to take care of themselves. The thing is, when I did this, I started overlooking way too much. By the time my daughter was born, I felt weaker than I ever had before. I still pushed the blame on pregnancy and decided I’d get better with time.
Again, wrong. I overlooked all the aches and pains because I grew up with aches and pains. Pain is no stranger to me. When it got worse and more frequent, I kept blaming it on what pregnancy did to my body, and assumed with a bit of gym time I’d be fine.
Then came the winter of hell.
The winter of 2015-16 was the worst I have ever experienced. I was in so much pain that I didn’t know what to do. Like I said, I am no stranger to it. But this was different. This pain was deep, burrowing straight into my spine with a twisted hatred, bent on breaking me down. It almost felt sentient, like it had a grudge and was intent on making my life miserable. I didn’t know why, but I knew it was different. It got bad enough to send me into the worst pit of depression I’ve ever experienced. I became
almost suicidal. Surely dying would be easier than living with this forever. But I endured, and eventually the sun came back, the cold melted away and I felt better.
It convinced me to finally seek help, and in fear of the next winter coming up, I saw my doctor. She took xrays, examined my crooked back while I stood there, exposed and afraid, and spoke into her recorder words I wish I didn’t have to hear. I tried to brace myself and block it out, but I heard the word “deformity” more than a few times. My body that I had convinced myself I was fine with, was suddenly an embarrassment. I felt like the Hunchback of Notre Dam. She had nothing but kindness and empathy in her eyes, yet I felt like there was a crowd of people watching me, pointing and whispering about my deformed body.
And that wasn’t even the worst part. I got bad news after bad news. My spine had twisted and curved more than I thought it could since I was a child. She asked if I had trouble breathing, I confirmed I did, and she explained that my ribcage was malformed, crushing my lungs. She promised to send my xrays to the in house surgeon, without much hope that he’d be able to help. And then she showed me an area of my spine that looked blurry on the xray and explained that it was arthritis developing. All I said was, “Oh, I knew something wasn’t right. I just didn’t know that was a possibility.” She offered pain pills, which I refused, and instead wrote a script for physical therapy. Later that day, I got a phone call from her. The surgeon took one look at my file and said that I would need a specialist. They couldn’t help me.
For some reason, it was the word arthritis that really bothered me. That’s an old persons word! A 25 year old woman should not have to worry about that word! I went to physical therapy once, and the youngest patient there was old enough to be my father. I think it was the first time it hit me that what I was going through was not normal, not okay, and not FAIR. Why, at such a young age, should I have to think about surgeries, doctors in far away states, chronic pain and feeling old? Why should I have to fight demonizing bouts of depression every time I’m in too much pain? Why me?
Since then I’ve turned myself into a guinea pig, trying herbs and vitamins and everything I can think of to help keep me sane and keep the pain at bay. For someone who couldn’t swallow pills before all this, I now have a pill box for each mealtime. Although I’ve still declined prescription pain pills.
Now I find myself looking out the window, at all this beautiful snow, and wondering if I can even handle it. I can barely look at it without my spine aching. Now everything I do, everything I plan, is filled with doubt. Will I be strong enough to handle this? Can I get through a girls night out without screaming in pain? (The answer is no, sitting on a bar stool for 2 hours means two days of recuperating.)
I still try, I still grit my teeth, smile through the pain and do the things I want to do. But it hurts. It’s not only about the pain, it’s about the experiences that are now tinged with that red fog of fear. The fact that I can’t take the kids to the zoo without worrying that I’ll hurt my back and not keep up. Or that they’ll run in separate directions and I can’t keep up to catch them both, because I can’t breathe! What if they get hurt? Because I hurt. My physical impairment is a catalyst to my mental illnesses, boosting my anxiety and adding logs to the fire of my depression.
So, yes. After 27 years of living with this, I finally hate my scoliosis. And I’m not ashamed to say it.