It’s late and I’m exhausted, but my soul needs some writing time. I’ve had a bit of a rough week. Nothing horrible. One of those weeks where a million tiny little things are frustrating and not going according to plan. We’ve all had them. There’s a few big things in particular that have been heavily weighing on me, although these have been in the works for months. My next few entries may be a bit depressing as a result. I have to write about them. Keeping everything to myself is a burden I’m tired of carrying. I find it hard to compose my thoughts and share these struggles face to face, but this writing space can be strangely freeing and meditative. At any rate.
There are two main burdens I’m dealing with at the moment, one spiritual and one physical. Neither are new. I hope to write about the spiritual one later, but for now I’m going to deal with the physical. It’s hitting closest to home, today.
No pictures today. I’m not trying to entertain you. Read it or don’t. Whatever.
I’m on the island for the weekend, spending time away from my schedule and enjoying every moment with my grandparents. I realized that I only have two months left here before I leave for Guatemala and then the Netherlands. I’ll be gone for over a year and I haven’t had nearly enough time with these lovely people yet. So, we’re all making the effort to spend a little more time together before I go. Gramps drove down to pick me up off the ferry today and Grammy put together an amazing dinner and we had a quiet afternoon. Grammy is working on a new kind of painting using alcohol paints (I think that’s what they’re called?). I’m not sure I understand how they work, but it’s beautiful. She painted and I sat with a textbook in front of me and talked about life and school and all of the things. Gramps came in to report that he’d found a chickadee under the bird feeder, frozen to death. “These little creatures live their lives with the fullest amount of energy possible, and then they go out just like that,” he said. He’s been thinking about these things a lot lately. Maybe he always has?
We had strawberries and whipped cream after dinner and sat by the fireplace to watch The West Wing for a bit. Afterwards, as we were cleaning up the dishes in the kitchen, my leg gave out and I very nearly collapsed. I had shooting pain in my lower back and couldn’t put any weight on my leg. It was like a piece of dead wood. I braced myself against the counter and pulled my leg to my chest. With a loud popping noise, my hip joint moved back to where it should be and my leg went back to normal. But I knew I was screwed for the rest of the evening. Once it happens once, it’s weak for a while and it’ll keep happening unless I’m extremely conscious of my every move.
So here’s what’s going on. I’ve always had weird flexibility and some mild joint issues. But over the past five months, things have gotten worse. I subluxate (which is like a mild form of dislocation) probably 8-10 times a day, on average. I’m in the process of being diagnosed. I was just recently diagnosed with hypermobility syndrome. I have a physical therapy appointment and an MRI next week. The MRI is happening because the specialist was extremely concerned about the fact that I can bend farther than normal in almost every direction, but can’t reach down past my knees. He thinks there’s something wrong with my lower back. The first thing he said about the rest of it is that, “People like this do just hurt all the time. There’s little that can be done. We’ll see what we can do, but you’re likely going to have to learn to live with it.”
I feel bad about the kitchen scene. I almost cried right there in front of my grandparents. Grammy almost cried too. You see, for the most part, I’ve been really good about hiding how bad it is from people, not to save their feelings, but to save mine and to convince myself that it’s all going to be ok. I talk about the funny part of having hypermobility syndrome instead: I can bend myself in unusual ways and it’s fun to test that flexibility. I don’t talk about the pain, if I can help it. I try to make sure I’m near something I can grab if one of my legs gives out. I can usually feel when something is just a little bit wrong and fix it before it really gives. I’ve taught myself the fixes for just about every dislocation there is. I’ve learned how to do them subtly so that people think I’m just stretching or shifting. Most importantly, I’ve really tried not to complain too much. Don’t get me wrong, when it’s bad, I’ll sit down or find a way to excuse myself from whatever activity the group is doing, but I don’t really get into WHY I’m excusing myself. It’s too demoralizing. It hurts too much.
Physically, it hurts. All the time. 24/7. I actually cannot remember what it feels like to have a painless body. There was a five minute period last week after a glorious pool + hot tub session where I came close, but it didn’t last long. If I sit here right now and focus on what hurts, in order from most to least… let’s see… it’s: my right hip, my left hip, my lower back, my right knee, both shoulders (equally), elbows, and hands. My right hip has collapsed on me completely three times today, so it’s really feeling it.
Mentally and emotionally, it hurts. It hurts much worse emotionally than it does physically, actually. I’m 20 years old. I’m not 40. I’m 20 years old and there are days when I cannot physically walk to school. I’m 20 years old and I have to pause and grit my teeth before attempting the stairs. I’m just waiting for the day when my leg is going to give out on the stairs and seriously hurt me. Simply going up or down them hurts enough because everything is grinding and wobbling and it’s terrifying. I’m 20, and I have to be very careful with sitting down or getting up again. I can’t run anymore, even just across the street before the light turns. Will had to carry me to the hospital once because I simply sat up in bed one morning without thinking about it, having forgotten that I’m slowly falling apart.
Oh, and climbing trees is out of the question. If you know me, you can imagine how I feel about that.
I completely broke down a few days ago. Something small happened and it was the tipping point, for whatever reason. I’ve been holding it together and being optimistic and not letting it get to me, but I feel hopeless. I bawled my eyes out and so did Will, a little bit. Maybe it sounds stupid, but my whole identity feels a bit shattered. I’ve always been the girl who ran with the boys, climbed the trees and mountains, and could hold her own in a fight. I felt strong and confident and sassy and capable. But I couldn’t walk across the kitchen this evening. Couldn’t. Walk. Across. The kitchen. And I fell and caught myself while climbing the stairs to bed. It feels as if my body is being intentionally spiteful, betraying me and giving out on me when I should be at my prime. I feel incredibly unsexy and incapable. I have this handsome partner who can dash up the stairs without thinking twice and who is incredible when it comes to planning his life and here I am, a bit scared to cuddle because I know I’ll get hurt. I’ve never, ever been delicate. Never. And now I can’t walk without dislocating or spraining a toe. It’s hard to explain how strange it is to be so held back by your body, but to look perfectly fine on the outside. Even to a close friend or my own boyfriend, I look like I’m perfectly ok. But I’m very far from perfectly ok and it’s only getting worse.
I know that my body doesn’t define who I am or how strong I am or what I’m capable of. I have friends who live with disabilities and who are incredible, successful people. My very own Grampsy lost the use of his left arm due to polio as a child. I grew up watching him do everything everyone said he could never do. I know that I will either find a way to fix this or to live with it. But I feel heartbroken nonetheless. Heartbroken for the things I used to be able to do, heartbroken for the adventurous woman inside me who’s held back by this, heartbroken by the look in my Grammy’s eyes when she saw me in pain, heartbroken by the instant hesitation I have when Will reaches to hug me. And I’m scared, frankly. Scared that I’m not fixable. Scared to go to Antigua for my internship and to try to walk on cobblestone streets for three months. Scared that my MRI is going to find something serious. Even scared to drive, because last time, my hip subluxated and my leg went numb and I couldn’t fix it while driving. I’m trying not to let the fear govern my decision-making process or mental health, but I’m struggling.
I don’t have a positive note to end this on. Usually I try to end even my most depressing posts with a silver lining or a window into a brighter corner of my life. But I’m going to be real with you instead. My heart is broken and I’m fighting to reconcile my identity and my body. I don’t know yet if this is going to be forever or not, but it affects every moment of my present life. I feel like I’m in mourning. I’ve been crying a lot. If any of you have been through something similar, I would really appreciate your stories and thoughts. I’ll let you know what the docs think when I get my MRI results back.