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Trying to hold on to the person I am without my pain is the hardest battle I’ve ever fought.”
A Eulogy For The Person I Was Before I Got Sick
When you live every day with pain, it’s hard not to imagine what your life might be like without it.
It was 5:43 a.m. As I stared at the time on my phone, I realized that the pain I was feeling hadn’t been a dream. I could feel the tightness in my stomach and the cramping in my back. I wondered how long I had before the pain would make me vomit. I wished I could just fall back asleep. I rolled over to grab the heating pad that I always keep by the side of my bed. And then I tried to brace myself for the immense pain I knew was coming.
I no longer remember what it’s like not to be in pain. I don’t remember what it’s like to not have a stabbing pain in my abdomen wake me up every morning. And it’s been years since I could take my dog for a walk without my vagina burning with each step I take. It rarely surprises me anymore. Having these aches and pains doesn’t necessarily feel different or out of the ordinary; it just feels normal. I don’t know anything else at this point, and the days when I did are long gone. Sometimes, I wonder if those days ever even existed at all. For the most part, I feel like I’ve come to terms with the pain. I’ve accepted it as part of my life. But then, out of the blue, I’ll start my morning and the pain will be unexpectedly fierce. It’ll be sharper than usual; it’ll wake me up in the middle of the night. I will feel heavy and weighed down. I’ll be forced to stay in bed for 14 hours straight. And I’ll forget that I ever came close to accepting this at all.
I’ve been living with chronic pain since I was around 15 years old. It was less severe back then — more of an occasional distraction compared to what it is now. It seemed easier to deal with; I think I still believed that I would grow out of it. Now, at 26, it is always with me. The pain causes me to miss work, to miss friends’ birthday celebrations…even to miss my own. But it isn’t just the physical pain that I’m dealing with. After 10-plus years of this, it’s the mental aspect of living with chronic pain that really tests my limits. Living in constant pain has drained me. Because living like this means trying to find a way to accept that this is my life now, and that this is who I am now. I have to do this every single day, over and over again. And after 10 years, I’m still not that great at it.
Living with chronic pain feels like you’re constantly at war. Each day is a small battle. Sometimes, the battles are easily won, and sometimes…they’re not. But beyond fighting with your own body to ease the physical pain, you’re fighting a battle to maintain who you are. Chronic pain eats away at you. Some days I feel like my chronic pain is making me lose my mind. I feel unhinged. The persistent discomfort causes me to be irrationally angry, and to lash out at those around me. It gives me immense anxiety, which has led to severe depression. It has taken everyday things like waiting in line or going for a walk and turned them into challenges. When you’re at war with your own body, small things become amplified. Suddenly that person cutting in front of you in line is your worst enemy. The coworker complaining of the hangover they have from the night before is the rudest person you’ve ever met. And the girl running outside your apartment window is there just to taunt you. It’s not rational. But neither is being in pain every day.
Trying to hold on to the person I am without my pain is the hardest battle I’ve ever fought. I feel like the person I could’ve been has died, and I must grieve for her day after day. I think about this a lot — the idea that I might be a totally different person if I weren’t in pain. I like to think I’d be one of those carefree girls who laughs easily and is always down for an adventure. I imagine myself smiling more often. I think I would have an easier time connecting with people, and people would be drawn to my energy instead of scared away by it. College definitely would have been a different experience. Instead of lying in bed with my heating pad wondering what the hell was wrong with me, I might’ve attended house parties or gone out to bars until 3 a.m. I might have traveled the world by now, or moved to Australia on a whim. Maybe I’d work on a luxury yacht. I like to think that I’d spend less time in bed watching TV and more time out in the world hiking, biking, and exploring new places. I yearn for simple things — like eating a donut without stomach pain, or being able to attend SoulCycle classes. I’d even settle for just being able to go on a run. Really, I just want to live my life. But I can’t do that with my conditions — not in the way that I want to, anyway.
I distinctly remember being a young girl and thinking about my future. I, like most people, often wondered what I would be like when I got older. I had it all planned out. I would go to college with a scholarship to play basketball. Once there, I would study to become a marine biologist, or maybe start my own ad agency — all while attending fabulous parties and dating multiple cute boys. I loved to think about who I would be when I graduated from college — what job I would have, and the exciting life I would lead as a twentysomething. I saw it all — the parties, the dinners out with friends, the vacations. I dreamed about several different scenarios, but none of them included me stuck in bed with a chronic illness.
As much as I want to be free of this disease, I can no longer spend my time endlessly searching for a cure. I don’t want to spend hours reading message boards, and I don’t want to continue spending thousands of dollars on specialized doctor visits. I want to allow myself time to grieve for the life I didn’t get to have…and then I want to move on. The time has come to get to know the new Lara — the one who has chronic pain, and might still have it 20 years from now. I want to get to know what this Lara is capable of, and I want to dream new dreams of where this Lara’s life will take her. Admitting this doesn’t mean that I’m giving up — quite the opposite, actually. It means I’m finally allowing myself to be free. I won’t stop taking my supplements or attending physical therapy. I might even still get a crystal healing now and again. I will never stop fighting back against the illnesses that have taken so much from me. But I cannot keep existing in this in-between — this place where I’m convinced that there is a cure out there somewhere, but I’m just not working hard enough to get there. I can’t live in the past anymore, yearning for a life I can barely even remember. I need to exist in the present, where I know that I am sick, and where I also know that I’ve done and am doing everything in my power to fix it.
Sometimes, I’m not sure who I am anymore. It’s hard to find the words to explain what it feels like to have your life stolen from you by an illness. One day, you feel familiar with your body and think you have an idea of what’s happening inside of it. And then suddenly everything is out of your control, and no matter how badly you want to fix it, you can’t.
There are different versions of Lara now. There’s good-pain-day Lara, and there’s bad-pain-day Lara. There’s “I’m Going to Fight This Shit and Actually Win” Lara, and then there’s “I Am Tired of Fighting, I Just Want to Sleep” Lara. I never know which Lara I’m going to get. But no matter which Lara it is, it’s never the one I thought it would be, all those years ago. And for the first time in a long time, that’s ok.