But wait! I wanted more brain surgery. And maybe some spinal surgery on the side.
This is what I thought, as I shuffled out of my appointment with a world renowned neurosurgeon’s office, yesterday, hoping for some answers to why I’m still sick, five months after surgery. We’d gone in, with some specific theories in mind, and all of them involved “fixes” that were surgical, fixes that while not simple, were simple answers: more surgery.
It’s a weird world when you hope for brain surgery, when you hope for steel rods in your spine, when you hope for a cervical collar, or at worst, a halo. When you are so sick that you hope these things are not only in your future, but that they are imminently so, you know that you are sick; in fact, you know you are really, really sick.
So, it’s an even weirder world when the expert says you are, indeed, really, really sick, but the answer you needed, or hoped for, isn’t what you had thought it was going to be. But, but, Occam’s Razor, I kept thinking, as he rattled off the dozens of things he thinks are wrong with me, instead of the ONE thing that would’ve been easier to tie everything to.
Sure, there’s a glimmer of hope that it’s still a surgical fix. I get to wear a weird, disc-shaped sponge, strapped to the back of my head, for a week. If that helps relieve some of my symptoms, then it’s an indicator that some of my pain is being caused by a surgical issue. If not, then I have to continue to explore the myriad of other problems he saw on my MRI and clinical exam, none of which were connected to what we thought was a botched surgery.
So, what do you do when you find out that you're sick and you don’t know why anymore? Start back over? Back to square one? We’ve been down this path and it’s a scary one. I was sick with Chiari for years before I knew I had it, and in the year leading up to the worst of it, had to fight like hell to find out what was killing me.
I know how to play this “help me, I’m sick,” game. It’s the least fun game in the world. Doctors, specialists, tests, imaging, all with a side of “you don’t look sick enough,” and “you don’t seem sick enough,” most of the time. Well, this time I’ve learned the rules.
The rules are these:
- Fuck you: I know how sick I am, and you will listen to what I tell you about my body. I make the rules about it.
- Doctors work for YOU, not the other way around: It’s easy to get intimidated by white coats, instruments, and their vast knowledge. But, we PAY them (well, our insurance does). They need us to be their patients. If a doctor doesn’t help me, and by that, I don’t mean that he allows me to bully him into meds, treatments and unnecessary tests; I mean if he doesn’t listen to me with respect, there are a million others equally as knowledgeable as him. I’m more than happy to spread Tricare’s insurance pennies around SoCal.
- Patient Education is Crucial: Any doctor who says, “Stop reading,” or “Get off the Internet,” is immediately fired. A doctor who doesn’t respect that you are an educated person that can sift through Internet BS to pull out good info, and who doesn’t understand that there is a distinction between reading to ask the right questions, and reading to hysteria, is not for you. Additionally, any doctor who can’t stand to have their ego challenged by a question or two, is a quack.
- I AM the Patient: Any doctor who asks my husband for validation of everything I say, or who doesn’t believe me without him present, he or she is outta my patient care team.
- I AM Scared: I’m still young; I used to be a kick-ass teacher; I used to be the fittest person I knew; I used to be a million things; now, I’m primarily house-bound. Please see me. See that I’m scared that I’ll never get even half of that back. See that person. See the person who is terrified of never running again, of never being able to go on a real hike with her family, of never being able to camp again, of never being able to go to Disneyland again. See the woman who has lost almost all of her former life. She’s not sitting in front of you because being sick has become her new fun game; she’s sitting here because she’s terrified, and wants to be better; she’s not given up yet. Help her. She’s a real person, and she used to be a different one.
Alas, as much as I wish I was still playing by the rules of Chiari, which I will always get to play, as it’s a lifelong game, I guess I get to add new rules because I have new games to play now too. I’m even more scared and more worried, because starting over is terrifying. But, we’ll make it! One step at a time.