If you’re reading this, you have something to be lucky for. You’re lucky you have access to a computer and the Internet and you’re not a starving child in Africa. I’m lucky I have a house to live in, food to eat, and am not dying of cancer. One thing I’m not lucky to have: my handicapped placard. Yet that is what one of my closest friends said to me a few months back. Let’s back up and I’ll explain.
Both my friend and I attend a local community college with limited parking spots. We were both arriving for a student government meeting and my friend had to park a few parking lots away and take a little trek to get to the school. I know this is not an easy walk as I have had to make it on many occasions when handicapped parking had filled up or I was in the process of getting my placard renewed and did not want to park illegally. However, this was not the case that day, so I easily pulled in to a great parking spot near the stairs. My friend and I happened to arrive at the stairs at the same time, and as she was breathing a little harder than usual thoughtlessly said, “Wow, you’re lucky to have that handicap placard!” At this exclamation I stopped walking for a moment and lagged behind as I silently turned into the Incredible Hulk on the inside. Once I got control of myself, I jogged a few steps to catch up to her planning to jokingly mention how the parking space may be nice, but the disease that comes with it sure isn’t. By this point, however, I had missed my chance. She had started talking to another friend that I didn’t know about an assignment for a class they shared. So I let it go. Until now.
Now I know it may seem unhealthy to hold on to this anger for so long, but the thing is, I think she genuinely meant that comment. As in, I don’t think she recognizes I struggle daily with an incurable illness that requires me to count my spoons and stay on top of my medication. And that hurts. Then again, I am excellent at hiding the true effects my illness has on me, though I make sure to talk about it from time to time so my close friends don’t forget about it altogether.
You see, I was a child actor. Yes the kind in LA with plenty of stigma attached to it (which I hope we can all discount since the stigmas attached to being sick are often ridiculous as well). I mention this because I think it’s of note that I have spent a good portion of my life being trained in faking an emotion or a facial expression. I have spent years being taught, essentially, how to become another person when needed. This has come in handy too many times to count throughout my life and career, but never more than when I need to pretend to be well (which is anytime anyone except my family is present). I’ve perfected the art of acting like a healthy person so well, I think people don’t believe me when I tell them the truth.
Most often I end up telling new friends about my illness when they notice my car is considerably closer to the building we’re coming out of than theirs. And don’t get me wrong, I try to be a good sport about it. Whenever we’re driving somewhere crowded I offer up my car because I know we’ll get a better parking space. And when someone asks me why I have the handicapped placard, I tell them the short version with a smile on my face. If this person listening says, “I’m so sorry” or something to the same effect, I smile and say, “Well it could be worse. At least I’m not dying of cancer!” I’m just now realizing that this may be the wrong way to handle the situation. My coping mechanism of recognizing what I’m lucky for has somehow translated to, “What I’m going through isn’t a big deal. I don’t really even need this placard!”
This makes me upset. So upset that I’m crying as I type out this post because the incurable, sort of treatable Complex Regional Pain Syndrome I suffer from is a BIG DEAL! It has wrecked my life. I had to graduate high school at 15, start college at 16, and spend an entire semester bed ridden because the pain sucked all of the life out of my body. I have had multiple surgical procedures, been on enough medication to sedate a horse, and can no longer work because I don’t have the energy of a typical 20 year old woman. But mostly, I have to plan out my days carefully, deciding how much medication and activity would be best in order for me to be able to participate in whatever I have planned for the rest of the week. My pain effects every week, every day, every hour, every SECOND of my life, because that’s how often I am in pain. EVERY SECOND.
So I’m sorry if I don’t look sick enough for you. Or if my acting has become too polished for you to believe that I need the placard. But I guarantee you that on many occasions it has made the difference between me making it through that meeting and me leaving early to go cry, take some medication and then a nap. So no, it really isn’t “lucky” that I have a placard.
Please excuse me while I go take some more medication, try to carefully adjust my pillow arrangement, and pray to whatever god is out there that my 30 minutes of yoga won’t mean I can’t drive an hour and a half to an appointment tomorrow. Wow, I’m feeling lucky right about now. How about you?