For those of you who are new here are a few key things you need to know to make it through this post:
– I was born with a genetic mutation called Ehlers-Danlos Syndrome. My collagen is a mess. I’m hypermobile. I can dislocate any joint with ease. I’m usually in a lot of pain.I was diagnosed at 11 and I’m now 35. It hasn’t killed me yet, but sometimes I wish it would.
– I am a Young Women’s Counselor for the Church of Jesus Christ of Latter-Day Saints (LDS/Mormon), meaning I teach kids ages 12-18, specifically working with the young women, but advising all of them. It’s like the equivalent of a Youth Pastor in most evangelical churches.
– My personal pain scale has natural childbirth (kidney stones for those who haven’t had pregnancies) as a 1. My everyday pain is a 2-3, which means multiple dislocations that would put the average person in the hospital on a morphine drip.
– Because of another fun genetic mutation my body does not process most pain killers. Aspirin and Tylenol? I thought those were placebos. Morphine? Might as well have an IV of sugar water. All the drugs they give you at the hospital for pain? None of them have ever worked.
– This isn’t a post about religion, so you’re perfectly safe reading on. 🙂
Here’s what happened on Sunday…
Sunday morning I woke up in agonizing pain. Somewhere around an eight on my pain scale. Last time I hurt this bad I threatened to buy a gun and shoot myself in the hip because three consecutive doctors refused to believe I was in pain. After finding a doctor who believed me, we found I’d dislocated my hip and knee and both had been wrongly placed for several months. I haven’t been in this much pain in almost a year. Physical therapy and a very careful regime of self-care that involves heating, icing, massaging, and using electroshock therapy usually keeps me mobile.
But I woke up in pain, and I couldn’t stand up.
You may have had something similar. Even if you don’t have kids and a class to teach in two hours it’s not a fun experience.
My physical therapist has a series of stretches I do multiple times a day to keep my muscles from cramping, locking up, and ripping my limbs from their sockets. I tried those and found my entire leg was locked up. Tip of my toes to the top of my hip, all cramping. Remember getting a charlie horse in gym class where your calf muscle cramps up? Imagine that, but with every muscle in your leg. Yes. Ouch.
My best guess is that something dislocated, pinched a nerve, and sent the muscles into a death spiral while I was sleeping. But who knows.
It took an hour of massaging and heating my leg for me to be able to stand and walk slowly.
As my muscles warmed up, I felt well enough to head to church. So I packed up the kids, headed to church, and went to teach my lesson.
Now, I won’t get into religion here because I know not everyone will agree, so you’re safe there. But it’s always interesting when you have an invisible disability and let people know about it.
Over the years I’ve learned not to be shy about my pain. Smiling through it does not make anything better. I have a short temper naturally, and when I’m in pain it’s worse. No amount of lying is going to make things better. So my policy is to let people know I’ve had a dislocation, I’m in pain, and that I won’t be putting up with any nonsense today, thankyouverymuch. The first time I do this to anyone they tend to look askance, but once they realize I’m not joking, they adjust. Usually… some of them don’t, but we don’t worry about those people, do we? We do not.
Anyway, by the time we hit the end of church I had propped my bad leg up on a chair and I was getting curious looks from my teens.
This is where the teaching moments are, at least for me. The girls there today were young, 12-13, and most of them haven’t dealt with someone who has a disability like mine. They’d seen me dancing on Tuesday, and Sunday I could barely walk. Adults who have seen this often think I’m faking. Because… why wouldn’t they? If I could walk well one day why on Earth wouldn’t I be able to the next? Is that how diseases even work? [SPOILER: that’s exactly how disabilities like Ehlers-Danlos work. It’s one of the reasons people who can walk also have disabled parking passes. Because – surprise! – we have bad pain days.]
Teens are a naturally curious lot, so I explained to them what happened. I explained I have bad days where it is hard for me to love. I explained that I have days where I can be fully active.
We plan on hiking this summer. In fact, I’m going hiking with my sons Cub Scout troop on Saturday.
But today I couldn’t walk.
And that too is a teaching moment.
Bad things happen. Bad days happen. Bad years. Bad lives. We all have times where we can’t move. Whether we are physically or mentally stuck, we sometimes find ourselves in a situation where we’ve lost control. Where something bad has happened and we can’t get to the next part.
Even with an action plan (I spent all day trying to reduce my pain with minimal results) the bad thing doesn’t vanish overnight. It’s not fun, but it is life. And, when you hit the spot I was in, you only have two choices. You either deal with it, or you die. It’s really simple. And I won’t like and say I don’t sometimes feel depressed or suicidal on bad pain days. There is nothing noble or inspirational about being in the kind of pain I’m in.
But I came home cheerful anyway. Because I’d been able to advocate for people like me. Because I was able to help people who will hopefully never be in a situation like mine develop some empathy. Because the teens I talked to today won’t be the adults who look at someone and say, “You’re faking it. You can’t really be that sick.”
They also learned that if they do have a day like that, if they’re ever disabled or in pain, that someone they know has been there. And they’ve seen an example of someone surviving and living with this. It was disability rep, pure and simple.
It’s always tempting to hide away on a bad pain day. To lie to people and say, “It’s not that bad.” Doing that leaves everyone happy for the moment, but it helps no one in the long run. Being visible, and being honest about my disabilities, makes it so no one has to feel alone on their bad pain days. It means making a space for the disabled and disabilities in the public view. It means claiming a space for myself even if I don’t wear size four jeans and if I’ll never do more than limp through a 5k hike again.
Today… I took up space. And I’m staying here. Disabled and visible.