Friday, July 8, 2016

Relapsing Remitting

Thank you letters and tokens of gratitude are sailing through the postal service with more to come. I am giving each letter the time and attention it deserves. I am very well organized. Thank you for your patience. 
written in gratitude for Aimee and Sharon 
Five months into treatment, I develop a fever. It comes and goes; some nights I'll wake up burning and drenched in sweat and by the morning I'll be perfectly fine. Other times I'll be walking through a field, running my hand against the tops of the tall grass and it strikes me, the air becomes suddenly thick, the earth beneath me tilts. 

One particularly humid night it finds me on the dance floor of an outdoor wedding, spinning and energized. I push through the crowd, wobble past the cake table and the DJ and the long, long path through a meadow until I'm safely in my car with the motor on (guiltily) breathing refrigerated air as I slip backwards into the glossy back alleys of my consciousness.
My doctor tells me that this is as encouraging a sign as I could hope for at this point in my treatment. A relapsing remitting fever and flu-like symptoms (essentially, the flu) could be a herxeimer reaction from the Babesia, a protozoan that infects my red blood cells and steals my oxygen from the inside. This would mean that we have defeated enough of the Borrelia (the lyme causing agent) for this particular co-infection to finally emerge from hiding, and we are successfully destroying it. 

I love my fevers. They make me feel powerful, mystical even, like I exist between this world and the dreamy, filmy world that I slip into when they hit. I have been infected with Lyme for ten years, tortured by Lyme for one full year, and this is the first sign that my body has noticed something is wrong, that it's starting fighting back. 
The six week on-agan-off-again flu steals my appetite. I've lost twenty pounds since I was diagnosed and now I lose a few more. I am prescribed Marinol to increase my appetite. I never dreamed there would be a day in my so far ravenous life that I would have to swallow a tiny little ball so that I'd want to eat. David starts making me these blended monstrosities and sitting across from me as I sip them, his arms crossed, foot tapping against the linoleum. 

I feel more powerful every day. It doesn't matter that I'm not hungry and that sometimes it feels very much like I am drowning on dry land, and I can say that for certain because I nearly drowned once. I become out of breath with this intense pressure in my face and I cannot speak more than two words at a time. It's a particularly venomous Babesia symptom known as Air Hunger. Nevertheless, something has switched inside of me, something only I can detect. It may not be visible to the outside world yet but inside my own dreamy fever world, I can feel it. I am no longer defeated by Lyme. I'm winning. The symptoms come and go and I observe them, but I am not attached to them. I don't cower in fear the way I used to. 
One afternoon, at a bakery in Vermont with my mom and my uncle, I'm trying to tell a story about something that happened to me in Burlington the day before. I breathe in short gasps, one word per breath, and I'm stabbing my sternum with two fingers, hard- some habit I've picked up that helps me cope with air hunger. My other arm, without me noticing, is flapping against my side, the heal of my hand beating my left leg. (Sometimes, when a limb goes numb or tingling, I find it helps to hit it over as if to prove to myself that it's still there.) 

So I'm stabbing myself between the ribs and flapping my arm and trying to tell this story between gasps and I don't even notice any of it anymore. But my uncle is looking at my mother and my mother is looking at me with this expression of horror, and then she reaches out and holds onto the arm that is beating my leg and she says, "Let's not do that here, honey." 

I freeze. "Sorry." I say. 

"Why don't we go home now," she says gently, standing up and gathering her belongings. 
this is mom
My doctor tells me to buy a pulse oximeter to wear on my finger when the drowning begins. "Try to stay above 95%, ok?" She writes. 

"What do I do if it goes below that?" 


I keep the device in my glove compartment. Sometimes I wear it at night, mostly out of curiosity. I watch the numbers flicker up and down.  I smile to myself. It's a game to me now, the killing. Lyme hates oxygen so I take huge deep breaths, watching the monitor. I fall asleep inventing a video game in my head: Borrelia Hunter. The Spirochete Slasher. See how many ways you can kill it without killing yourself in the process.  
Still, despite all of this, David and I have a remarkably normal trip back to Vermont. We swim every single day, driving up and down the spine of the Green Mountains in search of swimming holes. The cold water acts as a full-body anti inflammatory; it slows my heart-rate, reduces the vice grip on my chest and resets my breathing. We dive into waterfalls, disappear into potholes beneath the current and swim through storms of hard, warm rain. On our one year anniversary, we take a boat ride on Lake Champlain. "To a wonderful year," we toast. "Actually a fucking terrible year." And then we both break down laughing. 

It's done now. That first year is behind us. Finally, we can refer to it as in the past. 

The passing of time means nothing to an invasive, hole-drilling bacteria, but it means something to us. 

Is it over? 

Can we breathe now?
Our trips become longer and longer as I get stronger. We drive with the windows down and stop along the way to buy sandwiches and iced coffee. I travel with instant ice packs that will pop open with a squeeze just in case I need them. It's no bother at all. Two days pass in which I take no prescription pain medicine, then three.  
My aunt and uncle up the road have a small cedar sauna built into the corner of their basement, and every evening David and I sit and swelter until we can't take it any more, and then we run down the road and plunge into the pond. We swim after dinner and before bed. I lie on my bed in the afternoon and listen to my mother playing piano in the living room, my uncle playing the oboe upstairs. 
One day, I feel so confident that I leave the house for an overnight, my first in a very long time. I meet up with my friend Elissa in Burlington, and we walk all over town and down along the waterfront. We talk about the apocalypse and our old friend who fell off the Quechee Gorge and lived. "I'm not sure if he fell," she explains, "or if he sort of bounced."

More than anyone else in my life, Liss is able to help me transform the trauma of this past year into something that feels powerfully human. She listens when I tell her about grief and pain and everything this year has taken from us and instead of sympathy I detect a sense of admiration. Like she's proud of me. She watches these pieces of me fall out, instinctual and vulnerable and messy, and then it's as if she reaches out and lifts them away from me, crushing them inside of her fist and the opening her hand to reveal a palmful of diamonds. 
We eat dinner out, watch River Whyless play at Common Grounds. She teaches me how to make an infusion of daisies and red clover. I sleep on her couch beneath a weighted blanket she's sewn herself - "don't ever try and sew one of these, they'll make you want to kill yourself" - and I wake up at 6:30 am to her toddler running in circles through the living room. She makes me a bracelet of Baltic Amber to help with the pain, and every day there is less of it. 

I felt so normal after that trip to Burlington.  And normal doesn't mean normal anymore, it's something way better.  

Imagine every time you walk you feel like you're floating. Every time you're able to run an errand it feels too good to be true. You spend a night away from the safety of your own home and you feel as proud of yourself as if you had summited Everest. 

That's what I've been doing. Getting stronger and stronger and higher and higher until some days I'm floating on the ceiling, all by myself, just enjoying the very fact that I am still alive.  

Instagram  : @thewildercoast


Anonymous said...

Moving words about your sweet friend Elissa.

Susan S said...

Two thoughts, Melina --

1. Your appetite could be affected by the Babesia oxygen consumption. You feel air hungry because Babesia is burning up the oxygen, so you actually hyperventilate in order to feed both your own body at the Babesia, thereby inducing respiratory acidosis. I'm sure you know more about this from your nursing classes than I do, but when you get acidotic from either a metabolic or respiratory source, you have no appetite. I don't know enough about the chemistry of it, but I bet you do. Just keep feeding yourself good food, even if you're not hungry. It helps your bod. Take this in the way of cheerleading, not know-it-all snootiness, because I know you know all this. I'm rootin' fer ya!

2. You might not want to hear this, but your writing has become seriously lyrical post onset of the Lyme seige. I'd admit to visiting your blog because I'm stalkerishly obsessed with Hometeam, but that's not the whole truth. I wouldn't keep coming back if your thoughts didn't get into my mind and under my skin. Your words about the perspective adjustment gift of chronic illness, to see what else winning the battle can mean, are really something. Keep at it.

p.s. I appreciated your note so much. Taking my time to generate a well-thought-out response but it's coming, don't worry. Watch your mailbox.

Carry on, you feverishly elated floaty girl, you. :-) Susan

Sharon Smith said...

You are an amazing human being. I try so hard to put into words how much you mean to me. Every photo, every post you make inspires me to be the very best person I can be while being sick. You are the only person who has validated me with this illness so far. I told Ron, when I see you in the flesh, I might break down. I'll try real hard not to do that. Sunday is all about you and I will hug you to pieces. Thank you for your words. Thank you for everything.

I do have an appointment with the LLPA you mentioned. I talked with her on the phone. I'm looking forward to that meeting.

Love, Sharon

Melina said...

Actually Sharon, Sunday will be very much about you. All about Lyme warriors and their allies. I don't think it will ever be just about me anymore, and I welcome that change!! cannot wait to hug you!

Lee Timmons said...

Got chill bumps from this post. I love you, girl!

UltiBlerg said...

Shoot, should have told you to visit my parents' bakery! Unless, by chance you did? O Bread Bakery, it's on Shelburne Farms.

Anonymous said...

More and more, your posts are making me cry. Not out of sadness- out of inspiration, admiration, and awe. I am finding within myself the courage to face my own battles with more strength and positivity after reading your words.

Pam said...

I read all these comments and almost didn't write anything. They all are so well spoken and written and I'm not capable of that so I will just say how happy you made me reading this. I smiled so much that my face hurt and I felt lighter in my chair. I have been hurting for you for so long and now it seems you are winning the battle and I am so happy for you. Keep fighting, I know you will and keep helping those of us with chronic illness to feel good inside with your words and pictures. I look so forward to your posts and missed them so when you weren't able to write. TFS and take care. God bless you and yours.

Sarah said...

Xoxo Lina!

colleen said...

without Liss, life would be very dark indeed. 3000 miles has never stopped her from patiently listening to me lose my mind on countless occasions, and I'm happy you're closer in proximity to her now. Can't wait to be there with you two in a few months. Stay strong. xo

Karen said...

I love this so, so much.

Gayley Blaine Webb said...

There is a wonderful cook book called Eating the Alkaline Way that would be helpful. PM me your address and I'll send it to you.

Anonymous said...

Hello, I loved reading your relapsing/remittiing piece. So well put. so true. I have been treated for Lyme for almost 1.5 years. I would love to follow your blog about lyme. I've often thought of doing one myself. Hope to hear more from you. Sending strength and patience

elissa said...

love you.

Olga said...

'Can we breathe now?' sounds like fantastic title for a book about your struggles and eventual winning.

Nici said...

I love love love that your friend made you feel admired and proud. I imagine feeling pitied is something you don't like at all. And I also appreciate the way you describe the glory of breath, of walking, of ability to communicate...really puts chronic illness/disease/pain into perspective for the folks who care about you. So, thanks, honey. I am thankful for the way you are sharing this piece of your life. Love you Hometeam's Mama (as my kids still call you). xo

Teal Sallen said...

So good! Gorgeous stream of consciousness prose. Keep getting stronger, beautiful, brilliant girl.

Jess said...

Hi Melina! My little brother and I have been spending some time together the last few days; he is an avid podcast lover, so this morning before we head downtown for lunch with the husband and a visit to the Art Institute, I am playing him your episode of the Dirtbag Diaries. So good this time around, too. :) Thinking of you and sending love!