In my first post I mentioned off-hand that I had back surgery when I was 13 (and even though I wasn't allowed to shower for a week, Liv came to visit anyway. That's friendship! :)). (That's me to the right, a few months before the surgery and actually before the curve got very severe.) Well even though that was many, many years ago now, since around the time I turned 30, it's actually had an increasingly large impact on my current life.
The story (in as short as possible): when I was 9 I was found to have mild scoliosis. They followed it for a couple of years and it was fine... and then I hit a growth spurt (damn those tall Dutch genes!) and it went nuts. They put me in a brace for a few months (yes, it was as fun as it sounds) hoping that would slow the curve... but it didn't work. So on June 8, 1992, I was wheeled into the operating room of Columbia Presbyterian Hospital in NYC, where the doctors attached 2 titanium alloy rods (known as Harrington Rods) to my spine, one on each side. Pretty much my whole spine has been fused since that time, with the exception of my neck and the very lowest part of my back. The surgery went as well as it possibly could, the surgeon did an excellent job, and I healed according to plan. I was very fortunate really because without the surgery, I either would have been severely crippled and deformed or just died at a very young age.
So life went on, pretty much without any serious back issues, until around the ripe old age of 29. Then I slowly started noticing my back was becoming more sore, more often. At the time, I was working as a medical research coordinator and that meant spending a LOT of time hunched over people's arms, drawing blood. I figured that was the cause and no big deal. Fast forward about 2 years and although I'm now an instructor at a local College, and really don't spend any of my time hunched over thankfully, I'm almost constantly in moderate-to-severe back pain (between a 5-9 on that pesky "pain scale" the doc's always ask about). It sucks. To put it nicely. I know it's a cliche but it is so true that people who don't suffer from chronic pain really can't understand how incredibly awful it is. It's not just the pain itself and all the limits that puts on your daily functioning (it hurts when I sit more than 30 minutes, hurts when I stand more than 20 minutes, hurts when I lay down more than an hour... I'm like a rotisserie chicken, constantly moving), there's a whole mental angle that people forget about. Life just really loses some of its luster when you know every moment of it is going to be colored by pain. Fun is never as fun, relaxed is never as relaxed, beautiful isn't quite as beautiful. It can't be. Because you are hurting... and human beings aren't supposed to hurt. Not all the time. So it gets really depressing and it begins to effect every part of your life: your work, your friendships, your relationships, your social life. Everything gets tinged by, "How much pain am I going to be in at that time, doing that?" and "Is it worth it?". You're constantly weighing the pro's and con's of any given activity. Sounds exhausting, doesn't it? It is. And so, in turn, your significant others' life is constantly impacted, as well as your family and friends and maybe even your co-workers. Some people are good at sympathizing but I'd say more aren't, even though they try. And you can't really fault them for it because you know they just can't understand. And who wouldn't get tired of hearing, "Ow, it's really hurting today"? Who wouldn't find a way to tune that out, at least a little bit, when they hear it every. single. day.
And when you have to - constantly - tell someone you love, "I'm sorry, I can't, it hurts too much" you can't help but feel really bad about it. It's not your fault, of course, but it's still a huge downer and an even bigger source of guilt.
In terms of treatment options for me, they've been severely limited by lack of medical insurance and a serious lack of funds (see first entry where I talk about the pending bankruptcy). When you don't have money in America, your health takes a back seat, plain and simple. And despite what many people think, some of us really don't have any options around that. Oh, also, I've been without medical insurance because my employer doesn't offer it and I can't get my own private coverage because no company will cover me. I have too many health problems for that. Just a bit ass-backwards, no? So I have accrued mountains of credit card debt paying for medications that cost usually around $100 every two weeks, only subduing the problem but not actually treating it.
So like I said at the beginning of this post, it sucks. So much.
~ C
PS. Now feels like as good a time as any to include a wonderful quote that I came across recently. It's getting into the politics side of things but every once in awhile, I can't help it:
"Make it easier for your citizens to be healthy and smart and they will save you in ways you have yet to imagine. Make it difficult and your nation will swirl history’s toilet on its way to hell. When a person spends energy worrying about access to affordable healthcare they don’t have the energy to dream up the next Google. I’m sorry that this is a newsflash to some of you, but we are born dying and will each of us have 'problems' that need medical intervention; it is not something to be ashamed of or afraid to experience. It is a condition of being alive and I am shocked that anyone with a human body would place obstacles in the way of their brothers and sisters getting a pill or a procedure that could help them."
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