One of the more fascinating (to me) aspects of being finally diagnosed with a connective tissue disorder is all the little things over my life just falling into place.
It was the same when I was diagnosed with Aspergers, with a heart issue, with a sleep disorder. Suddenly many weird things started making sense.
For example: in high school I was invited to join the volleyball team because I was really good at it. Excellent in fact. Except that I might be excellent on Tuesday, but unable to hit the ball on Thursday. Or move from excellent to incompetent in the duration of one class period. Or the other way around: I might start off poorly and suddenly everything fell into place.
That last is the apt expression. I knew it was a problem with my joints, but I didn’t have the vocabulary or medical understanding to explain it back then.
My joints are loose. So sometimes they weren’t sitting correctly in place. When everything was in the right position, I was a powerhouse and the gym teacher begged me to join the team. Then my shoulder or elbow would shift and I had no control over the ball. Or my hip slipped and I couldn’t get to the ball in time.
In junior high, I made it onto the A list basketball team, in part because my best friend, an excellent athlete, convinced the coach, gave me constant pep talks, and refused to leave me behind, even though everyone knew she was lagging behind for me. I caught the coach chiding her for it more than once. One on one, she outperformed everyone. With me, she straggled at the end.
I didn’t know I had a heart condition, I thought everyone saw red when they ran. Haven’t we heard a million times that excellent athletes push through everything? Or that no one else had folding ankles and sliding knees. I thought they were just more dedicated than I, that because they tried harder, their bodies obeyed them more willingly. Mind over matter, everyone! You can achieve anything you set your mind to!
But now I look back at how hard I tried, despite all of that, and I still did good enough. Not great, not star material, but good enough. Now and then, my body cooperated and I soared. It was like magic, like I had found a way to tap into a secret well of strength and drive and coordination, and it was heady stuff. It made all the falls and slips and lagging behind worth it.
And my best friend, one of the top players? Stepped aside in those moments and let me shine. She hugged me and praised me and took pride in my success, which was right since she had done so much to get me there.
I always wanted to be a runner. I wanted to own that basketball court. Really, I wanted to play soccer, but basketball runs in brief spurts, while soccer demands a greater endurance that I could never manage.
I realize now that it wasn’t a lack of ability, effort, or drive. My body simply couldn’t do what I asked it to.
So now I know. If it wasn’t for my condition, I would likely have been great at sports and enjoyed it. I would have actively sought the running team and soccer team in high school. I might have done the same in college.
That sucks. Some days, I see a lot of missed possibilities, missed joy.
But when my anxiety and depression aren’t eating my brain, what I see is a friend who never let me down and a will that dominated despite limitations I didn’t know I had.
I didn’t get to be a runner. I never got to go backpacking through the mountains. I didn’t get to be awesome at soccer. I struggled to keep up, I climbed mountains with an inhaler and fell behind.
But I climbed mountains. I made the team. I had my own Sam Gamgee dragging me to the finish line. I had the best of friends, the kind that doesn’t give up just because it’s hard.
I learned that I don’t need those things to be me. I wish that I could be a runner and climb mountains. That desire isn’t gone.
Some days I can’t make it out the front door. Sometimes I get out of bed and something in my foot slides out of joint, or my hip shifts and won’t take weight for a minute, or my shoulder complains that my arm is too heavy, why would anyone ask their ligaments to hold up something so heavy anyway?
That’s hard. Some days it feels hard to bear.
But I have friends who show up when I need them, parents who once dropped by to check on me even though they live three hours away, who support me and cheer me on, a parish community that gives me needed support, a deacon and his wife who have let me talk their ears off at stupid hours, FB friends who pray for me and send me needed messages of encouragement , once a surprise box of chocolates…
I’m probably going to outlive you all, but if I don’t, there will be a lot of me saying, “and Jesus, you remember that time that X showed up at 2 am? That Z stayed up with me until 4 because I needed someone to talk to? That Y made me laugh when I couldn’t see because I was crying? When all these people showed up and hung back at the rear of the pack with me? You best not forget that.”