LOCATION: Columbia Heights, DC.
Hello, loved ones.
We are staying at our fabulous group house until May 17th. It’s been fantastic to be around some church friends and in an exciting neighborhood for our DC Swan Song.
In the midst of this big moving process, I had some big health changes, so I figured I’d use this space to talk about that. This is not the last you will be hearing about this from me.
CONTENT NOTE: It’s long, personal, and talks a bit about health/exercise/bodies, abusive doctors and self-doubt.Check your spoons before you wreck your spoons.
The State of My Body
Knowing the state of my body has never been easy, because over all of my health issues is one big, overlying cloud. My body has always been good at tricking itself.
My nerves (in this case, not nerves like “emotions”, nerves like the “there’s a telegraph line, you got yours and I got mine“) and the rest of my physical body aren’t always on the same page. Sometimes, I feel like a superhero and can’t even feel the pain my body would be in if I could, and other times, I’m feeling pain at high levels that don’t make sense, like saying “ouch” when a friend hugs you.
It’s classic fibromyalgia. And in the past, I’ve had periods of frequent non-epileptic seizures, sometimes 3-5 a day. I’ve been doing amazingly well with this symptom in the past year or so, but it’s a big part of my medical past, and the catalyst that got me to get medical help in the first place.
And then last summer, I was diagnosed with endometriosis after ten years of speculation/shitty doctors/being told my symptoms were all in my head. You can read “Not All Uteruses Who Wander Are Lost
“, my reflection on that adventure, at Moxie
But that’s an incomplete story that’s long overdue for a 2016 update.
And guess what!! The rabbit hole that is my body’s issues goes even deeper, my friends.
So apparently….under all of that endometriosis pain, my physical therapist noticed my hip was unstable, so she sent me to an orthopedist. He found a labral tear in my left hip, which is unusual, but not unheard of, in 26 year olds. My physical therapists (I have 2 that work together on different parts of my body) and my rheumatologist also figured out that I also have Postural Orthostatic Tachycardia Syndrome
. And with a look at my skin, my family’s medical history, and my Beighton Score
, I got a new diagnosis. A genetic disorder, actually. Ehlers-Danlos Syndrome.
My primary care doctor was very frank with me that this is no surprise to him. He said something like, “well yeah, but we always knew your genes made you this way! We just didn’t know how so some doctors said it was in your head until others figured out how it all works.” Unlike the doctors I had in my early adulthood, he believed my pain all along. Funny how when the doctor believed me, we could figure out the underlying problems together.
My PCP often reminds me that we don’t know enough about the relationship between the psychological brain, connective tissue, and the nervous system itself to know how to “cure” fibromyalgia, EDS, or any of my other host of medical issues yet. He stresses using physical and psychological therapies to keep myself in the best emotional and physical state I can be in, but with the most emphasis on helping me be comfortable and happy.
So now, I’m working on being happy. It’s my full time job!
I worked a day last week, and I’ll work a day this week. And that’s it for DC. I’m not looking for a job in Massachusetts or New Mexico, either. I’ll find other ways to express myself, and our cost-of-living change makes it easier for us to survive on one stable income.
Before I got to this type of sick, I used to have such a binary view about disability and health. If I was “feeling” disabled that day, I wouldn’t leave the house at all out of shame, and if I wasn’t “feeling” disabled, I’d push myself to the point where I’d break until I couldn’t leave the house for a few days, exacerbating the symptoms of my disability. But now that I know a little more about my body (I have weakened collagen, a torn hip, and often get dizzy on my feet, which can make it hard to focus on mental tasks), I know what my limits are. I’ve been living with this for a long time, but I’m ready to embrace it as a part of myself so I can move on to other things.
And I know that walking unassisted is an incredible waste of my time. I have places to be, things to learn, stuff to do.
I don’t have time to go against my biology and perform as a 100% bipedal creature for your convenience, your ideals of beauty, or your comfort in dealing with me in public.
I’m taking my emotional comfort from the #cripplepunk
movement which allows me to be unapologetic about my body’s limitations and exist as disabled in public. Taking up space. Sitting down on the crowded trains. Refusing your help if you’re only offering to make yourself feel better and whatever you’re doing does jack shit for me.
So, I started using a cane.
And even more taboo- it’s just a sometimes thing. If it’s raining out, or I have a long day of things I want to or need to be at, I’m not letting myself say “no” if a long metal stick many adults use will get me there. That’s where my brain wants to be, and my brain has been spending too long in the backseat. My brain has been through enough of this shit.
I am prioritizing my wanderlust heart over your standards of beauty. And on the long days, or the rainy days, or the days where I can’t seem to kick the pain- I’m using my cane. Even if I wasn’t using it this morning. Even if I plan on doing something without it later.
My cane is collapsible and fits in my purse. To be honest, I seldom feel as happy as when I take it out and give my hip a break, or when I collapse it up and put it away when my legs finally feel okay again.
The cane is me getting better. The cane is huge progress. I might add other mobility aids as we learn more and more about how EDS affects me.
And for all of those concerned folks about my physical activity declining due to cane use, rest easy. I’ve found myself walking for longer and prioritizing my PT homework higher than ever since I started using mobility aids. I’ve hit my movement goals every day lately after months of tripling it 3 days a week and not hitting it 4 times. I may get out to the desert climate and never need it again.
But all of that doesn’t matter. I could be an athlete in six months or I could be in a wheelchair in six months. This month, I sometimes need a cane, so I sometimes use one.
Like today, at the Postal Museum.
I was trying to look sassy. [Accessibility: a woman standing under a statue of Ben Franklin at the Postal Museum. The woman is using a cane with one hand and holding a tote bag with the other]
Giving myself permission to be more visibly disabled is the most empowering thing I’ve done in a while.