As I stare at the blue skies out my office window, I can feel the steam from my brewing tea bringing warmth to my comfy space on the floor. Not only that, but the turning of gears and rumbling of change deep in my core. And though thrilling and exciting, it also has a way of grounding me. Of brining me back to what caused this feeling, and I believe that to be stories like this one.
It's easy for me to get caught up in the moment, taking however I'm feeling right now and projecting it onto the rest of my life; how can I accomplish anything when I feel like this? And that right there happens to be an example of what happens when hope isn't at the forefront of healing.
This story quite literally stopped me in my tracks. You know, the good kind of stopping. The kind that encourages me to take a few steps back and make room for 'hope', and not just sometimes, but every single day. Because in order to see yourself as deserving and worth the health that you're so desperately fighting for, you need to carry your pain, doubt, criticism, and set backs on the shoulders of the very thing that has brought Melina to the place she is today: hope and lots of hard work.
With Melina's words ringing so true, I almost get the urge to laugh with joy; her witty and open way of writing has me smiling to myself, while her realness and power through vulnerability locks me into hope and all that it has to offer.
I don't wish to take up any more space in this beautiful piece of magic, so I will step back, sit with hope, and let you dive into all that this story has to offer...
A Tough Little Fighter Takes a Holiday Cruise
Written By, Melina Coogan
I’d like to start by telling you that I’m alright now. I think we are used to shocking people when we talk about our illness. I don’t mind shocking people who are not sick themselves, or people who have never heard of Lyme disease. When they inquire, I give them the full, untempered horrors that summed up my past 18 months. I fit as much as I can into the time I’ve been given, even if it’s just four minutes while riding a bus.
But I don’t want to shock you, not if you’re sick, too. Instead I will reassure you, before I even begin, that this thing does get better.
We are driving to the airport, my brand new husband and I, to travel to Vermont for thanksgiving break. In the car I feel as if I am flying. The first layer of my body, the skin and the first layer of tissue, feels as if it’s floating above my bones. The sensation makes no sense, it cannot be explained. It must be in my head.
Only when the plane takes off do I feel normal again. The sensations of flying- now weightless, now heavy- masks whatever is going on inside me. Then we land, and now I feel that I’m being sucked down to the ground, as if I’m riding one of those horrible centrifuge rides they had at the Vermont state fair when I was growing up.
By the time I pull up the snowy driveway to my childhood home, my face is spotted with deep red polka dots. My mom grabs my shoulders, holds me at arm’s length and and studies me. In just a few more days, my legs don’t cooperate. They’re still caught in the centrifuge. My husband, David, props me through the door of an Urgent Care Facility in New Hampshire.
At first the doctor will not order the blood work. We all know this part of the story, unfortunately. She insists I’m anxious, depressed, a hypochondriac. She thinks I’ve lost my marbles. Four months worth of troubling symptoms don’t impress her. My not being able to walk does not impress her. “Come back in when you’re crawling,” she says.
She really says that. Dave was there. His memory works.
I refuse to leave until she orders the test. I stare straight ahead. She finally gives in, in a little storm of indignation and annoyance. “I don’t know why you want to even know,” she says, snapping her file shut. “You live in the South. Nobody down there will help you.”
Two weeks later I’m sitting at a café in Asheville, North Carolina, where Dave and I call home. There are red and white Christmas lights on the windows, pulled taught and forming neat squares. I’m writing an article for work. I’m an outdoor writer. The phone rings and I answer it. The voice on the other end is inexplicably chipper when it says, “You have Lyme disease!” As if I’d won a holiday cruise.
Yes, congratulations to me. I’d won my diagnosis.
Enter Doctor June. She has an office downtown. She’s unbelievably expensive and does not take insurance. The severity of her bedside manner is the perfect complement to the shaking, quaking, stuttering, weeping woman I’ve become. I have never known such fear in my life. I don’t want to be hugged, or soothed or smiled at. “You are extremely sick,” says Dr. June, looking at me even as her pen is flying over the script pad. “But if you do as I tell you, you will recover in two years.”
I walk out of her office that first visit with seventeen separate prescriptions.
When I was 15 I nearly froze to death in the White Mountains of New Hampshire. I was out hiking with my high school (a boarding school for white water kayakers, sex scandal, now defunct) and we were lost in a blizzard for two days. The temperature that night dropped to forty degrees below zero.
In my early twenties I taught photography at a high school (a boarding school for whitewater kayakers, now defunct, no sex scandal) and I nearly drowned. It happened on the Rio San Pedro in Chile. I was trapped underwater in a death eddy, I saw spots and blacked out, but my body slipped through a tunnel and found its way to the surface.
Later on that same year, some students and I were trapped above a lethal rapid, 700 feet deep in a narrow canyon. (You can see why the school did not need a sex scandal to become defunct.) After escaping the river, I had to free climb out of that canyon, inching up sheer rock walls, in order to save the students and myself.
All of those things and many more like them throughout the years made me begin to believe that I was a remarkably tough young girl.
But I never knew what it meant to be a fighter until I begin Lyme treatment. The buckets of medicines, the fear and boredom and unrelenting pain- the pain that seeps into you dreams so that you’re never free of it, not for a second. The appointments and blood work, the same day lived over and over. I convulse in the bathtub and lose thirty pounds off my already lean frame.
Bright yellow spoonful by bright yellow spoonful, I swallow the 3,000 dollar bottles of Mepron. And the HIV meds, and the antibiotics (8 of them!) and the antifungals, and the painkillers, and the sleeping medicines.
I do exactly what Dr. June tells me to do, following complicated, color-coded med calendars that I tack to the backs of the kitchen cabinet. As the Lyme -and Babesia, Bartonella, Erlichia, Powassan Virus, Tuleremia, Toxoplamsosis and Mycoplasma- feel the shells falling on their biofilm cities, they run screaming and they make my life hell. The herx lasts through spring, then all the way to the end of summer. And then, just like that, I start to feel better.
If now is the time where you are expecting me to say something precious about the person I’ve become and the lessons I’ve learned, I am going to have to disappoint you. We could discuss empathy and perspective and gratitude and swap Rumi quotes forever, but I’d really rather not. If I could do it all again, I wouldn’t. Lyme disease stole a year from my life, and my savings, and my husband’s savings, and very nearly my husband.
It’s okay for you to hate this disease. I did. But that worked for me- it’s easier for me to fight when I loathe my opponent.
My message to you has nothing to do with a silver lining, or finding small bits of joy, or learning how to love yourself. I recommend all three of those things but I imagine you can discover that in your own way. My message to you is very important: you can be very, very sick, and still get better.
You can be extremely sick for a very long time, and your health may rise and fall and bounce around (mine did) and you can still get better. You can lose all hope for a night or two. I did. And you can still get better.
There was no magic for me, only medicine and time. Broth seemed to help, as did grass-fed butter and good eggs. But mostly, medicine and time. It’s been a year since I began treatment and I don’t feel sick anymore. I have one year left of maintenance antibiotics and after that I hope to be finished.
I hope that you’re finished soon, too.
These are words that stick with you whether you know it yet or not, stubbornly weaving themselves into your days, pushing away the doubt and reaffirming all that it means to to be more than.
I am in awe of Melina's perseverance, drive, and overall enthusiasm for life. So much so that I encourage you to follow along on her adventures through writing, photography + much more on her Instagram + Blog, The Wilder Coast:
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