Monday, May 2, 2016



I'm lying in my bed covered in insects. I try and brush them off with my hands but I can't get rid of them. They're the worst type of insect- everywhere at once, biting, stinging, invisible. I twist against the blue flowered sheets, trying to relieve the crawling. The twisting becomes twitching, my muscles spasming until my I'm nearly jerking off the bed, rattling around like that time I was driven to the put-in of the Grand Canyon in the back of a pickup, bouncing through the rutted roads of Polygamy Country in an ice storm.

But there is no adventure now, no story to tell later on and no river waiting for me at the end of the road. Only me and a disease that half of the medical world will not admit exists, even though the Borrelia antibody continues to show up positive in my blood, band after darkened band on the Western Blot Test.

David is lying next to me, although I wish he would leave so I can be spared the terrible look on his face. He strokes the hair around my face until the convulsions begin, then he draws his hands back, the two of us repulsed by whatever mechanisms is causing this grotesque misfiring of my neurons.

By now, one month after the official diagnosis, my nightstand is piled with books on treatment, on Lyme Disease, littered with tissues and pill bottles, mostly benzos: ativan, seroquil, klonopin, lorazapam, ambien. I look like an addict, like some overprescribed fiend whose future is nearly guaranteed to lie in the hands of some Xalisco-boy black tar heroin cell whose drivers will arrive at my doorstep spitting balloons out of their mouths.

Only I hardly ever take these prescriptions; each one of them is like a hand that pushes my head under water. Half of them don't work, so why bother. The others will relax my muscles but they'll also soften my brain, leave me feeling drugged up for days, lost in a heavy fog of fatigue and nausea. They are not worth it. Instead, when these episodes hit, we wait them out.

When the convulsions first began, we considered going to the hospital, but that was a brief notion. I'm a smart girl; I know you can't show up at the Emergency Department and explain how you feel bugs crawling all over you. They'll just waive you away or ship you off to psych. I don't blame them for that.

As a matter of fact, you can't show up at the Emergency Department and tell them you have Lyme, either, no matter what the symptom. They'll waive you away or they'll ship you off to psych. I do blame them for that.

Poor David. This isn't what you thought it would be like, is it, honey.
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Still January.

David is costarring in a kayaking film and we're driving down to Charlotte to watch the premier.

The day before, we had dinner with some of David's old friends, one of whom has battled chronic Lyme since she was a teenager. Since I am about to begin treatment, she was trying to prepare us for what the first few weeks or months might look like, when the disease becomes temporarily and often violently worse before it gets better, a phenomenon known as the Jarisch-Herxheimer reaction.

David held my hand as we walk back to the car after dinner, his face set. He barely said a word that night, just threw his keys on the nightstand and fell into bed.

And now we're driving in silence on what should be a night filled with excitement, the sprawl of Catawba County streaming past in a blur of neon.
My new husband's capacity for compassion and patience rivals that of my parents', whom I consider to be the pinnacle of kindness. Yet my own abject fear and paranoia has left me acutely aware that, unlike my parents, David could walk away at any minute. Our town is teeming with young women who love to run around in the outdoors, who would delight in my husband's humor and bright red curls and enormous heart. He could fall in love again and get married again, and hope that this time his bride would not transform a few weeks after the wedding, as I did, into a thing that shakes and cries and stutters and slurs, that drops plates and glasses and torpedos into walls and asks over and over, "what is happening to me?" 

I know he won't leave me, but what I don't know is whether or not I can stay with him if I get worse, if I can pull him down with me. Is that what you do to someone you love?

(Is it?)

I cannot take the silence in the car, and so I make a split second decision. I tell him that if I don't recover within the year, I am going to leave him. I will not burden you with such a choice, David, whether or not to stay with me. I will leave you.

He grips the steering wheel.

He says, "Thank you."

That night, my husband runs first descents in Labrador, Canada on a huge projector screen while a hundred beautiful young kayakers in trucker hats look on. Up in front of the crowd after the show, David explains that three days after returning from this trip was his wedding day. "This trip was my bachelor party," he says, and the crowd laughs. My friend Maeve tells me this later, because I miss the movie, I miss all of it. I'm locked in a stall in the bathroom, holding my head in my hands, sobbing.

Things are so bad. Things are very, very, very bad for us right now.

But they get better. I'm writing this in May. There is more to the story, but our life doesn't look like that any more.


Please consider helping me fight my battle against Neuroborreliosis by clicking on the yellow button on the top right of the screen. I am five months into one year of intensive and incredibly expensive treatment, not one dime of which is covered by insurance. I've dreamed up an elaborate way to say thank you.   


Pam said...

My God Melina, I don't have the words to express what I am feeling as I read this or how I feel when I am finished. It's like a movie that will end and everyone will be fine and the actors will go home. My heart bleeds for you and David and I am in horror as I read the things you tell us about you, this monster disease and the medical profession. I read the words you wrote and understood your feelings, but can't believe that David would let you leave him. It's for better or worse......I pray to God to guide you both and keep you in his care. I also pray for your health. You are a very strong young woman and it will be better............please take care............

Jess said...

Reading this absolutely breaks my heart...but I am so relieved and happy to hear that it gets better. Much love to you.

Amanda said...

Tears. You two are inside a hurricane. I do hope that this is the ultimate test and some day, many years from now, you will both look back and say, "we got through that, we can get through anything." You are an amazing storyteller. Keep fighting the good fight.

Sri said...

Fuck. Tears. Memories.

My husband took me to a corner in a park and begged me to leave him after his first set of treatments failed and he wasnt sure if it was RA or lyme or parkinsons or something else.I remember so clearly hugging my husband in a corner of a park sobbing and feeling nothing but despair knowing he thought long and hard about saying those words.

I remember being so hurt. All I can say is true love much more powerful than we can imagine. Human beings are much more resilient than you or I can imagine.

I am glad you are not in that place any more with David and you'll navigate these waters the best way you know how, but together, and thats all will matter.

Susan said...

Done - no gift necessary although you've come up with some sweet and wonderful options. I am so deeply sorry for this horrific misery you're navigating with every breath.

Jen said...

I just wanted to say...I'm so sorry and I'm sending positive vibes for your body and spirit. I wish words could help you more, and I'll donate when I can (Recently found out we need to get out of our apartment because the landlord is selling and I have 7 month old twins...excuses excuses). You are a positive force of nature and you will get through this.

I also wanted to comment on something you said in a previous blog post. That once you are through treatment you'll STILL have to wait to try for a baby because of finances. It's your life and I am but a stranger on the internet...but don't wait for financial reasons. You'd be surprised how little $ you need for at least the first year or so. All of our babies' clothes and items either came from the baby shower or were hand-me-downs and while we go through hundreds of diapers a month, I've hardly had to buy any as parents and grandparents randomly show up with boxes. I've joined local mom groups on Facebook where clothes and items that are barely used are given away or sold on the cheap. I pay it forward to other moms and will to you too when the time comes. Others will too.

Kelsey said...

Please know that this comment comes from a place of humility and a lack of understanding of your situation-- you've made yourself vulnerable here and I want to treat you with respect and care. That being said, I'm really surprised about David's response of saying "thank you" when you volunteered to leave at a certain point. Even if that's not the place you are both at NOW, how can you unring a bell? How can you recover from that? Wouldn't that plant a seed of doubt that always brings the "am I worth it?" question into every argument or challenge in the future? This whole situation seems so grief- and fear-filled, and my heart goes out to both of you. I've followed your blog for a long time but am an infrequent commenter. I think of you often, though--and I hope that your recently unearthed happiness is sticking with you. Good luck.

Jessica said...

You, marriage & love are stronger than this...sending you positivity!