When you think about your life as an able-bodied person, what fulfills you? Does going to work and seeing your colleagues make you feel successful? Do you feel better about yourself when your boss offers you that promotion you’ve been striving for? You worked really hard for that promotion and you deserve it. How about when you see the balance of your bank account? Do you have a little bit leftover after your bills are paid? I’m sure it’s nice to go into work Monday morning with that new handbag or a pair of earrings you’ve been eyeing at Macy’s for a while. Those things, they fulfill you, make you feel like a person put on Earth for a reason. You went to college and earned a degree, and now you can do what you were taught how to do. It’s a very fulfilling way to live.
Before I was diagnosed with Ehlers-Danlos, I never thought about what my life would be like if I didn’t become a medical assistant after college. It was my plan and I intended to follow it, the way every other twentysomething follows the goals they set for themselves. When my body started to revolt against me after years of telling myself “this will get better” and “I need more sleep” and “I stopped drinking soda, my joints should feel better now,” I found myself, for the first time in my life, unable to do the things everyone around me (including me up until that point) was doing.
Now I think about parents often. I think about parents with able-bodied children, and how proud they must be that they put what I always considered “whole,” “successful” human beings out into the world. When I stopped being able to work, I stopped feeling whole, I lost my sense of purpose. When I stopped getting a paycheck, I stopped feeling successful. I felt like a failure both personally and professionally, and like I wasn’t worth anything because I wasn’t giving anything I had to offer to the world. In late 2012, I went from having a good job, friends, and dating casually to being unemployed, broke, isolated and alone in the span of a year.
I battled, and still battle, depression over where I’ll be in five years, three years, next year. And then slowly but surely, as the days wore on and I didn’t feel any better, and my joints got worse, and the migraines were unbearable, I started to realize that this was the new normal I was going to have to work with. This was my life now and I couldn’t squander that gift. It was just a matter of figuring how to best use it that was difficult, and sometimes felt like an impossible task. And as many chronic illness fighters know, some days are an impossible task. I had to figure out what would fulfill me if I never had the chance to put my skills as a medical assistant to good use again. And let me tell you, I was a good medical assistant. I graduated with a 4.0 and student-teaching under my belt, along with licensing from the American Medical Technologists. I felt like I had it all, and then I didn’t. It was difficult to reconcile who I was without my academic and professional accomplishments.
What would I be? Who would I be? No one was able to tell me that (and I asked, oh believe me I asked). No parent, no rabbi, no friend, no doctor could tell me who I was supposed to be when the things we’re told we have to do and be to be successful in life were taken away without my consent. Even my therapist refused to “give me” the answers. Something about “I had the keys.” That wasn’t helpful at the time. I felt like having keys to doors I couldn’t find wasn’t doing anything.
I think Brad Pitt as Tyler Durden in Fight Club speaking the words of Chuck Palahniuk said it best: “You are not your job, you're not how much money you have in the bank. You are not the car you drive. You're not the contents of your wallet.” The full quote is laced with profanity, but you get the point.
I didn’t have a single “aha” moment where I suddenly had it all figured out. I didn’t pick up a book or watch a movie and suddenly have the answers to all of life’s little dilemmas. Far from it. What I had were endless days in bed, in my pajamas, staving off migraines and listening to Numbered Days by The Eels on repeat. During those endless days (days I’ve yet to really find a good way out of yet) I somehow put the pieces together and realized “I am not my job” and “I am not the contents of my wallet.” When I accepted this, I was able to enjoy things again. I can’t tell you how I put the pieces together because that’d be giving you keys to doors you can’t find, but I can tell you I realized that the more I hated myself, the more time I was squandering. For me, personally, God helped. I picked up my late grandfather’s bible and I found solace and comfort in knowing God put me here for a reason.
Knowing I’m here for a reason is, in and of itself, fulfillment for me. Spending each day doing one small thing that makes me happy, whether it’s baking lemon bars or finishing a really long book, is fulfilling for me these days. It’s no longer doing something I’m “good” at, because I had to make peace with the fact I may not be able to do the things I’m good at anymore. Now it’s the things that make me happy. If I can bake, or read a good book, or feel a little less like a bag of bones after a long shower… that’s enough for me. I’m fulfilled. I’m not going to end this by saying it’s sunshine and rainbows for me, because it’s not. I battle thoughts of worthlessness on a regular basis and I have to remind myself that I’m here for a reason, that I’m not useless or worthless, and that there’s something out there for me. Even if that something today, now, is getting through today so I can thank God for another tomorrow, I’m learning to make peace with that.
Molly is doing her part to help create a brighter future for all those living with Marfan syndrome and related disorders by participating in the South Florida Walk for Victory. Click here to support her efforts!