My name is Shannon Beam and I will be running a marathon in April to raise money for my good friend Haley who is battling Lyme disease.

Haley Caruso is nineteen years old. At first glance, most people assume there's nothing wrong with her. She’s that girl in the car next to you jamming to Taylor Swift or the girl with a ponytail studying near you in a Starbucks. But if you look a little closer, you'd see that she’s anything but healthy. She has two tubes hanging out of her arm (a PICC line, for her IV treatment) hidden under a sleeve or cuff. She puts on makeup to cover the huge, black circles around her sunken eyes, but it's not even worth it most days. She’s covered in scars from botched injections and procedures. The nurses in the emergency room used to say, "Oh hey, you're back!"
She has late-stage Lyme disease and she’s only nineteen years old. She doesn’t remember what it feels like to live without pain.
She was born infected with Lyme and various co-infections, so they didn't know that she was sick (or that her younger sister Rachel was either) until she started having vicious migraines after a head injury when she was fifteen. Lyme can lie dormant in your body for years, just waiting for a waver in your immune system. She had a nasty collision playing soccer and within a few weeks, she was experiencing pain like nothing she could have ever imagined.
She was misdiagnosed, marked as just another patient with "chronic pain" that needed to, and I quote, accept that "people like her don't get better". She’s had a constant, unrelenting migraine for four years, crippling fibromyalgia, chronic fatigue, insomnia, tremors/twitches, daily nausea, allodynia (a condition in which parts of your body that can't usually feel pain, like your hair, can in fact be painful), concentration problems, brain fog, painful eyes, stuttering, nightmares, memory loss/problems, severe depression...the list goes on. Those are the ones that she deals with on a daily basis.
She wasn’t diagnosed until she was almost eighteen. By then, the Lyme was out of control and she needed serious treatment. She tried a rigorous course of IV antibiotics, but they proved to be ineffective. She was then referred to a homeopathic clinic in New York City, where many people were treated for Lyme and cancer with German and Swiss medicine. $120,000 and an exhausting round of IV treatment later, she was about 30% improved. They estimated it would take her body up to eight months post treatment to recover, so she knew that there was much waiting to be done. She was thrilled, though, to be able to read again, remember directions, and not stutter.
But she lost the health she had fought so hard to regain in a span of about two weeks in July, when she came down with a serious case of pneumonia. She suffered a full relapse. She was (and still is) absolutely devastated by the return of her illness. She is now sicker than she has ever been.
She wakes up every morning and the first thing she is aware of is pain, radiating throughout her entire body. Pain medication can’t touch it, hospitals can’t calm it down. Pain is as much a part of her life as breakfast or Glee on Thursday nights. She is intimately acquainted with pain and all that comes with it.
She left school with a 4.4 GPA. She used to play three sports, peer mentor, participate in Latin Club… she was the perfectly well-rounded student. What would her life have been like if she hadn’t gotten sick? What college would she have gone to? What scholarships would she have gotten? What career would she have chosen? Which people would still be her friends?
However, those questions are a waste of time. It’s taken her four long years to figure out that life never goes as it’s supposed to. Life goes how it will and you make a decision every single morning when you get out of bed how you are going to live. She is often questioned by adults, asking how she can possibly be out of bed and participating in life when she is in such pain.
“Well,” she says, “I can be sick in bed, or I can be sick and living my life as best I can.”
That’s why you’ll hear her singing next to you at a red light, or bump into her in line at Starbucks. She refuses to let pain and disease dictate her life. She will not let infection destroy who she is and all that she has worked for. She’s homeschooled herself, got a 31 on her ACT, and been accepted to multiple colleges with scholarship offers. She did this on her own, gritting her teeth and working her butt off. She doesn’t care if she has to read a book three times before she takes a test, she will do it. She made sure to have a huge handful of pencils next to her during standardized testing, because her hand tremors would send them flying across the room. Most importantly, she’s fisted her hands and squeezed her eyes shut and made it through hundreds of excruciating nights where she had no other option than to kill herself and end her pain. You will be hard pressed to find someone with chronic pain or illness who has not considered suicide. In fact, 10% of all suicides annually are by those with chronic illnesses.
But Haley still has a positive attitude. She says….
The last four years have had some pretty awful moments, that’s true. But truly, I consider myself the luckiest girl in the entire world and you’re probably rolling your eyes as you read this, but I swear it’s true. I’ve gotten to spend time with my family on our road trips to see doctors, all those nights we spent wide-awake, waiting for pain to subside. Illness sorted my friends out quickly into two categories: true or false. I lost my very best friend to this division when I was 15, but it was for the better. The truth is, when you lose something (or everything), you can spend every waking moment trying to recover it and put it back just the way it was, or you can open your eyes and find something new, something beautiful and honest and good. I cannot tell you how drastically your life will change if you stop looking down at your feet for something you’ve dropped and start looking forward to all that’s ahead for you.
Don’t get me wrong, Lyme is an absolute nightmare. I’ve been in treatment for years and I am still not well. Insurance covers very little of my medical expenses. I still suffer outrageous pain on a daily basis. I am fighting for my life, not just my good health. Lyme will kill you, very slowly, and I know that that’s a real possibility. I am not scared to be in treatment, or to die, but I am terrified that I will miss out on everything I’ve been looking ahead to. I am scared for my sister’s life as well. If I could give health to anyone, it would be her.
My story isn’t necessarily a happy one. I’ve cried, bled, screamed, prayed, and fallen silent many, many times. But even though I’m not sure I have a happy ending in sight, I live my life as a story to be proud of. I am proud of the way I refused to let doctors belittle me and had the strength to hope for a diagnosis and cure. I’m proud of how I’ve endured all the needles, procedures, and nurses who don’t know how thread an IV. (I mean, really?! I can do it myself if you let me.)
I’m sick, but I’m strong.
I’m in pain, but I’m smiling.
And I’m still that crazy girl in the car next to you, trying to channel Barbra Streisand and Taylor Swift all at once.