Disability

Hypermobility

Yesterday night, as I laid on my back in bed, I took a deep breath. When I did this, I heard and felt nearly every joint in my thoracic spine crack into realignment. And within a couple of hours, I had to sit up to crack my entire neck, because I could feel everything was out of place and couldn’t get comfortable enough to sleep.

I was born with my body in this state, and didn’t have the words to express what was wrong with me for the first 25 years of my life. I was told that when I was very young, I needed shoes custom made out of leather hide, with a completely flat raw hide bottom, to learn how to walk. If I hadn’t been put in these shoes to learn how to walk, I would have been wearing leg braces. In some respects, I am glad that I wasn’t wearing leg braces as a small child, because I saw how my peers and classmates denigrated a little girl who did. They called her a moron, for no reason other than the way she walked. I had enough problems from being treated terribly, without throwing kerosene on the fire. On the other hand, perhaps I would have known what I needed, if I had the experience of using a prosthesis at an age that the memory would have stayed with me.

I don’t remember a lot about how painful my body was from when I was younger. This is in part due to the fact that I simply don’t remember a lot of anything before about age ten. From what I do remember, my neck, fingers, and toes all started cracking before I was ten years old. There were always times like when I remember trying to give a friend a boost to climb something, and feeling my entire lumbar spine cracking under her weight. Or when I tried to do a dive roll in gym class and felt multiple vertebrae crunch as I rolled over the mat. Or when someone spotted me to do a handspring, and anyone in the room could hear my entire spine crackle as I vaulted off the balance beam. We’d all have a good chuckle about it, but a problem was brewing that I didn’t know about, that I needed help for.

As I got older, the incidents got weirder and more painful. I started trying to stretch my legs for greater dynamic flexibility. But I couldn’t understand why my muscles didn’t feel like they were stretching, and I experienced pain in my hip joints instead. I couldn’t wrap my head around my lack of balance on a set of figure skates. I started feeling pressure and dull pain in my fingers until I cracked my knuckles, and my sister started trying to convince me that I’m going to have arthritis in a couple decades. When wrestling came up in school, one of my classmates nearly dislocated my shoulder with the first move. I had to have a note written out to excuse me from participation, for my own safety. Then I started having headaches that would only go away if I got help to crack my neck. Then back pain that wouldn’t go away. Then I started breaking all the toes on my feet while I was running up and down cement staircases at the local NHL stadium, and I wouldn’t figure it out until I took my shoes off after work and I couldn’t just crack my toe to make the pain go away.

When I moved away from my parents, I became homeless within the first month. I had gotten myself on welfare, and mysteriously “lost” my keys when a man offered to drive me home from a bar (his idea of driving me home involved stopping at the back of the airport, and I yelled at him until he started driving again — I’m fairly certain he stole my keys earlier that night in the hopes he could manipulate me into going home with him). When I got up the next day, that would be the last time I was inside that household. I spent four days phoning, asking if someone would be home by the time I could get there, and being refused every time, leaving me stranded in cyber cafes or with dangerous people in extremely vulnerable circumstances that left me sleepless. On the morning of the fourth day, I was evicted over the phone, and had to trek clear across the city in the frigid cold twice before I finally found a place where a bed was open for me. My entire body was in spasms from the pain of every joint becoming misaligned. I could barely walk but I didn’t have a choice.

Then began the most physical pain I’ve endured over a prolonged period, in my entire life. It wasn’t enough that I was walking around in snow that was deeper than my knees in tennis shoes that were falling apart, or that I was starving even after I escaped homelessness the first time. My muscles were in constant spasms, and no matter who I talked to, everyone thought I was faking it. My friends at the time (what few I could maintain) started talking about fibromyalgia syndrome and chronic fatigue, and every doctor I went to told me there was nothing wrong with my body. One of my “friends” even thought he was being especially hilarious when he grabbed and held my wrists together behind my back in the middle of a conversation about how much my back constantly hurts. He then lifted my wrists until I had to lean forward to prevent an injury, and he kept pushing even though I begged him to let me go. Both shoulders cracked completely out of their respective sockets in a loud CRACK, my hands came over my head as I snapped upright, and then they slammed back into place with a sick popping noise. I felt like someone had opened a blow torch onto my chest for an hour after the fact. Obviously, my shoulders have never been the same since.

I’ve also dislocated a hip joint during a genital piercing. I’ve pinched a nerve just by tilting my head slightly upwards to look at the alarm clock when I wasn’t sure if I wanted to get up.  I’ve had all the spasms and pain massaged out of my back by remarkably talented non-professionals, and within as little as an hour and a half, between sitting and walking, was worse off pain-wise than before the massage. I’ve pinched a nerve when someone has tried to realign my back by lifting me up and compressing my ribcage from behind me. I can even pinch a nerve if the back of my chair is too low and I try to stretch by leaning against it. I’ve been diagnosed with early onset bursitis because I get radiating pain from my elbows until I can crack them (and they both crack an average of two to three times a day). When I finally had the money to get the orthotics I was told I would need before I could be accepted into a major make-up artistry school, I finally learned the words “hypermobility” and “hyperflexible”. Every joint in my body is hyperflexible, and it’s not nearly as much fun as it sounds like.

When I first got my orthotics, I felt like I had my own personal chiropractor built into my shoes. Every day, I felt a gradual build-up of tension, and every day, I would relieve it by just swinging my arms side-to-side and hearing my entire back crack and pop. Before long, the pressure from misalignment in my back started occurring multiple times a day. Then I needed to start realigning my neck multiple times a day. Then my wrists started crackling along with my elbows. Now I can’t be on a bus for longer than a half an hour without realigning my entire spinal column, and I can’t take my bike out for a ride without feeling my knees crackling for the first five minutes of uphill pedalling. Recently, I spent a night on my couch when I had spent all day moving and didn’t have room to pull my bed out. I woke up with three dislocated ribs and couldn’t breathe deeply for the first four hours of my day, until walking around on my orthotics had caused enough movement in my joints to allow me to crack my back into alignment.

I’ve met people who say they sound like they are made of spare parts because they have crackly joints, but I’ve rarely met anyone who understands how painful it is to live like this. I can’t carry groceries in bags anymore because more than a few pounds for longer than a half a block at a time is all it takes to cause debilitating burning sensations in my upper back, shoulders, elbows, and wrists. It doesn’t show up on x-rays because it’s not a subluxation, and doctors frequently think I’m cracked in the head. Dealing with hypermobility has come to represent an invisible disability to me. Except that everyone around me can hear it, on average, at least once an hour.

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