This is a guest post by Katie Hart.
Happy anniversary lyme disease. Here’s to one year of pain. 365 days of every symptom imaginable. 8,760 hours of uncertainty, tears, fear, and anger. 525,600 minutes since I last had energy. Over 31 million seconds since I last felt like a real person. It’s been a year, and it feels like it’s still just you and me, lyme. And I hate you.
I remember who I used to be. I remember the girl that used to get hyper off a shot of chocolate syrup and run rampant around campus like a madwoman, turning cartwheels and lounging on rooftops. The girl that used to backpack around Europe, sleeping under tables in bars on Greek ferries and exploring ruins in the French countryside. The girl that once climbed a mountain in the dark to play baseball with a bag of potatoes and a stick, or who moved to South Korea just because someone heard a rumor that the dance scene was good. The girl that was strong enough to build a teepee in Herrang and work the early morning truck shifts at a retail store. The girl that tried to outdance everyone in DC by setting a record for the most number of days danced in a row.
On October 28, 2012, I was putting on my shoes to go to campus to organize stuff for our big dance competition. I was so excited, I had been practicing hard and dancing almost every day, and I had this feeling that we were going to be amazing. And then I put my shoes on, and my back started twinging in pain and I collapsed on the ground in unimaginable pain. I should have gone to the hospital, except that there happened to be a hurricane imminently arriving and I was scared to go outside in the rain and wind. After a week of lying in bed, I finally went to the doctor’s office, and after testing me for a ridiculously high number of other diseases, my blood work came back positive for lyme.
But, isn’t lyme curable? you say…a year of anti-biotics and a month and a half of an IV in my arm echo back a resounding no. Sure, most people are cured with a month or two of drugs, but I’m not most people now am I? I got the bad kind of lyme, the kind diagnosed just a little too late.
It never crossed my mind before I got sick how every little thing can be so freaking hard. Like putting on my shoes. Or picking up a pencil for a student that dropped it on the ground. Or climbing the 2 stairs up to the door to my apartment complex. My life is a constant struggle, peppered with tiny, seemingly outwardly insignificant victories. I remember the first day I could walk around the house by myself after being stuck in my bed for so many months. When I could go to school and they didn’t have to send me straight back out the door in a wheelchair. I felt so proud the first time I took the trash out by myself. And when I miraculously survived a month volunteering in Herrang without having to tell hardly anyone that I was sick.
My legs feel like the tin man’s legs, filled with jello, and then zapped with various volts of pain. I’m wobbly, dizzy, stiff, mentally forcing every step to happen out of sheer willpower. My hips feel covered in rough, gritty sandpaper that wears down on the rest of my joints. My knees feel like someone is stabbing them all over with an icepick. My back feels like someone has mistaken me for a baby seal and is clubbing me repeatedly. My hands shake sometimes, and sometimes waves of pain just shoot through my body randomly. I have trouble concentrating, or remembering what’s going on. I’m freezing, or I’m feverish, I’m nauseous or I’m lifeless. And I’m always, always exhausted.
(For my favorite explanation of how it feels have no energy for anything, see http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)
I’ve visited more doctors in the past year than I have friends. I feel like I’ve lost touch with so many friends just from being sick and unable to go to social events, or to have the energy to drive over to their house to hang out. I’ve lost friends from lashing out unfairly at them when they try and fail to help. I don’t want to talk to non-sick people about being sick; I’m tired of their useless advice, like « take a nap » . Like I haven’t tried nap-taking. Like it would even make a difference if I did take a nap. I’m so angry that I snap every time someone says “lymes”. It’s not Lyme’s disease, like Lyme was some sort of important person that made some sort of scientific discovery. It’s not Lyme’s disease, it’s my disease. MINE.
I need help, but I don’t like asking for it. I can’t ask for help, it’s just not in my nature. At orchestra practice this past week, when I resigned myself to sitting on the table in the hallway because I couldn’t carry myself or my cello out the door, it took me 20 minutes before I finally got up the guts to call someone over and ask them to walk me and my instrument to the car. I want people to help me, but most of the time that turns into babying because I’m sick. I feel like letting people know how ill I actually am makes them look down on me; like they’re more of a person than I am, or that they know better than I do, because I’m sick and they aren’t. People don’t know how to help, so I wish they would just ask me how.
Having an invisible illness in the dance scene is even worse. I’m scared to go to dances, because I’m scared someone new is going to ask me to dance. I’m tired of explaining that no, I actually do know how to do a swingout, I’m just going to purposefully not follow it because the entire lower half of my body is screaming at me not to, even though it was fine with swingouts 4 minutes ago. I’m scared that an old friend is going to forget how sick I am and do something stupid like dip me accidentally and set me limping around for the next week or two. I want people to ask me to dance. And then I want them to ask me if it’s okay to dip me, or spin me, or swing me out, or whatever, and I don’t want them to think it’s anything on their part if I say no. And I don’t want them to assume I’m going to say no just because I said no last time. And if I do say no, I want them to sit next to me on the sidelines and chat with me instead- I miss human communication. Unfortunately my plants and Polee, my stuffed polar bear, don’t talk back.
I’m scared to register for dance events because organizers aren’t always understanding or accommodating when it comes to invisible illnesses. If I have to cancel the day of an event because I can’t stand up, let alone dance, strict no-refund/no-transfer policies mean that I’ve just wasted a crapton of money that I don’t really have, and I don’t get to dance. I just don’t register for things anymore, unless I’m volunteering for them, because I might have to cancel. At least with volunteering I’m guaranteed a chair to sit in to support me. I have my good days and bad days, but who knows when a good day will suddenly turn into a bad day with Lyme disease? Why aren’t invisible, long-term illnesses taken into account when the people in charge write the fine print?
I’m scared of giving up all my dreams for my future. I’m scared I’ll never be able to travel the world again, to just pick up and move whenever and wherever I feel like it. I’m scared to get on a plane, because it hurts too much to sit after a few hours. I’m scared I’ll never be a great teacher, because I don’t have the energy to keep up with my students, or to walk around the classroom to help them. I’m scared I’ll never get married, because I don’t know whether or not my legs will let me walk down the aisle and hold myself up at the end of it. I’m scared of having children, because I’m afraid I’ll never be able to pick them up or carry them around. I’m scared I’m going alienate all my friends and family over this, and at the end of it, it’s just going to me and lyme.
I’m still sick. And I still need help, even though I won’t ask for it. So happy anniversary lyme disease. One year down, potentially the rest of my life to go. You might have won this year, but maybe I’ll beat you… hopefully…eventually.