I have a condition called Ehlers-Danlos Syndrome. It’s a collagen-deficiency disorder that causes great pain — trust me on this. It’s so rare that even out of the percentage of people with it, only a few of us lucky ones are bothered this much by it. What I know can only be divine intervention, my best friend, Sarah Y. Westmoreland, has the same condition. It’s because of her that I know as much about it as I do. Normally the pain sets in in the late teens/early twenties, but Sarah was in a wheelchair by the time she was eight. I don’t know whether or not you believe in miracles, but being a degenerative disease, it does not get better. But through a kind, wonderful physical therapist, Sarah has been on her feet for nearly a decade. This is a miracle. True, we often were glued to the couch in exhaustion and pain with our little teacups as April went around and asked us what was wrong and we responded, basically, that we felt old.
(Part of EDS is that it’s very hard to get up in the morning).
It hurts, guys. I’m in a flare right now and can barely type. My back feels like I have knives shoved into it, my elbows feel like someone’s trying to rip them from their sockets. I got stuck in the middle of the kitchen because my ankle was in so much throbbing pain I couldn’t put weight on it, but my mom can’t even help me into a seat because when she touches me, it hurts somewhere else. Mind you, this is a flare and it will go away after a time. It could be a week. It could be a year.
I work at Subway and I love it. But a few weeks before I left on vacation, so circa early December, the pain began to set in. I had felt it coming on almost ever since I started work, but I’m the kind of person that when I’m on duty, good luck getting me to slow down.
(Most accurate thing I have ever read).
Right before I left on my vacation, I asked to talk to the general manager. I explained about the pain, EDS, and that I really didn’t want to quit but felt that I might have to. Liz, Kayleen, and Marlena told me to go rest up for my two weeks, then when I came back we would figure something out.
So I go to work two/three days after I return. I have my cute little Subway outfit on, my tiara behind my visor, and my Mrs. Handel sweatshirt over my arm. Marlena runs up to the edge of the counter and welcomes me back, then proceeds to inform me that Liz and Phil (the owner) had made a new job entirely for me. I’m basically to be the face of Subway, greeting people that come in, chatting, and cleaning the lobby as best I can while making our customers feel happy and welcome.
Who does stuff like that? Who creates an entirely new position for one worker, especially when that worker has a disease that is almost completely invisible and that even the doctors don’t know about? I work three days a week tops, and at most for an hour and a half. I usually make it around an hour, but I’m hoping that as I take it easy I’ll be up to full capacity eventually.
They let me come to work covered in braces, and I’ve been all but forcibly kicked from the premises when I start showing signs of pain.
Okay, so that was a while ago. I have come back from my hiatus. See, the pain was so bad I had to go in spurts, and now it’s better, thank goodness. Not gone, it still hurts, but I can actually type now. And then I forgot. So, back to business:
The kindness shown not only by my bosses and coworkers has amazed me, especially as I’ve been working for quite a bit now and am very valuable to the store. It has to be hard on them to lose a good worker, as I’ve seen happen way too many times. They actually just had to let me go, seeing as they aren’t getting a whole lot of business right now and I’m kind of useless. But they were amazing about it. Marlena, my store boss, had me help fill out the quit-paper, we had a nice chat, then when I got up to get a sandwich and leave, she gave me a hug and told me to keep coming back. Marlena is kind of a hard-edged person, so when she gives you a hug, it means a lot. Everyone I’ve worked with is the same way. Even if I had to be let go at a time when all their most valuable hands are either leaving or getting kicked out, they still have had it in their hearts to make sure I felt loved and appreciated, when really, there wasn’t anything I could do that was capable of earning appreciation. I’m definitely popping back in and getting a six-inch chicken teriyaki. And begging a handful of jalepenos from Mikey.
(I’m second to the right — don’t ask what I was doing. I look scared. Left to right: Ralph, Phil and Kayleen, Amber, Chris, Liz, Mikey, yours truly, and Rhiannon. This was ages ago, so not all of us are there anymore. Oh, yeah, and Liz again. We won the statewide Subway of the Month Award!)
Then there are perfect strangers. We were in the city — a three-hour trip away, ugh — and lining up to get tickets for Imitation Game. I could literally barely walk. I had to take baby steps, lean against the pillars on the way to the ticket window, and was trying very hard not to be crabby. Walking like you’re 100 years old when you’re still a young woman is embarrassing on many levels. Especially when in a big city where you’re supposed to be having fun. This older woman sitting on a bench — she was probably in her seventies — was watching me struggle, then called, “Honey, are you all right?” I smiled and responded that I was, but that simple act of kindness, accompanied by the knowledge that my condition wasn’t troubling anyone (I feel bad when poor drivers have to wait for me to cross the street), lightened my heart considerably. When I’m at church, where I’ve been in Nursery so long not many people know me, so many people ask if I’m all right. I have to explain constantly, but I don’t mind. I am honored that I am a recipient of their kindness. It’s made easier to explain by the fact that a friend of mine that’s also in the ward also has EDS. Tessa is amazing — she has three kids and when her printer broke, she wrote her entire talk out by hand. If you don’t have EDS, you can’t know how much that must have hurt. I never would have done that, at hers is even worse than mine. She and Sarah are constant inspirations to me.
(This is absolutely awesome! I need this, guys! Mall, here I come!)
That so many people care gives me so much hope for the world. Perfect strangers, good friends, my family — as long as people like them exist, the world is a beautiful place. They’ve really shown me what love and caring is all about.
(P.S. The zebra is the mascot for EDS. Isn’t this’un so cute?)