Thursday, May 26, 2016

go hide and be brave

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries. Click here to listen to The Miracle of Darkness. 

Now. On with the story.
thank you to Sarajane. Check your mailbox and enjoy your tiny treat at Trade and Lore!
I don't feel well enough today to write anything. I don't have any thoughts about it, either. So much of this disease is blank space. Staring up at the ceiling with nothing new to think about. Same four walls. Same bed. Same bathtub. Pain is frightening and certainly exhausting, but it's the blankness that I find to be the most agonizing. The world is streaming along outside the window, bright and humid, early summer, but time has stopped for me today. I have a feeling tomorrow is going to be better- it usually is these days. Still, it's been a year now that I've been sick. It does start to wear on you.

Dave took that photo of me the day that I was diagnosed. We had this idea that we were starting some new adventure, however macabre. We were curious, confident, ready to pull out all the stops. Grateful to have an answer, finally. My doctors suspect that I was infected nine years ago, and the funny thing is, I can read through this blog and see hints of it. Nearly a decade of troubling symptoms and misdiagnosis and finally we had an answer. I thought it was something worth posing for, brave little silhouette I was.

Later that night I called my sister in law in California. She heard my raspy little voice- excited little voice, I was excited- and she said, "Okay babe, from here it gets a little more complicated." But what does she know. She's only suffered from chronic lyme for years, and years.

A few weeks before my diagnosis, our friend Michael drove up the Carolina coast, checked himself into a motel and shot himself in the head. The night before his funeral was when I first noticed the rash behind my kneecaps. David called Erich into our room. I was lying in bed in my underwear. "Just turn over so Erich can see it," said Dave, because Erich's in medical school and he is our best friend, although Michael was his best friend. I rolled over onto my stomach, embarrassed, feeling like a little kid. Erich said it looked like poison ivy.

But the next day, as we were driving home from the funeral in a storm, we stopped at a gas station and in the bathroom's silvery, graffitied mirror I spotted the same red, blotchy pattern blooming up my neck and across my jaw. The skin was rough and raised, and it felt burned, like a hair drier held up to my face. That rash stayed with me for three months.

Then there was more, and more, and more, until we flew to New England and David propped me up on the papery examination table at an urgent care clinic, and two weeks later a chipper lab technician called and announced, with inexplicable triumph, "You have Lyme disease!" Sometimes, because of the timing of it, I joke with David and Erich that this was all Michael's fault. We resort to gallows humor. We say terrible things.

So began our big adventure, and I did sun salutations on a rock to show the world how feisty I was. The very next day our friend Taylor drowned. Erich called me in the morning, which is what he did the day Mike died, which is how I knew it was bad, otherwise he wouldn't call me in the morning. "Would you mind telling David," he asked, "I can't do it. I can't do it again."

So I call David at work and I tell him that Taylor drowned, this lovely young man who only knew how to kayak because David and Mike and Erich taught him for six years in a row at summer camp. David suggested that he go to Ecuador to paddle, because that's what David did when he was Taylor's age. Taylor went to Ecuador and drowned. I told David and he goes, "Does that mean he's dead?" I said Yes and David said Ok and hung up the phone.

Listen, I didn't know how to write any of this and I certainly didn't want to. But a few weeks ago my eyes turned yellow from the detoxification or babesia in the liver, and that sort of freaked my husband out. It's tricky to have an illness that is for the most part invisible, although I've lost 20 pounds which is a clue, but all in all David finds it reassuring that I look so normal. So when my eyes became a little jaundiced he didn't like that at all.

Here's the thing though, last week I wrote that some days I feel like this disease and what it's done to our life is not bearable. It is bearable but sometimes it feels like it isn't. I never wanted to write that before, because one does not want to invite pity. Pity makes a sad party worse. But I wrote it, finally, and the very next morning my eyes were white again.

I needed to get this out, the thing about Michael and Taylor. Nobody I know had a great autumn, we certainly didn't. Yes it does get a little more complicated. Perhaps you are safer as a silhouette with no features to discern. Hide. Although you know what they say about hiding. There's no place and you can't run now, either. Blame the bad joints. It is an adventure you were right about that. But you never could have anticipated the blankness that's settled between your ears, or the empty hours: not the sheer amount, nor how slowly they will pass.
If you're interested in helping me get better, here is how, here is why, and here is how I'm going to say thank you.


LAH said...

Your eyes should never be turning yellow. This isn't a sign of detoxification, but rather that your liver is inflamed (likely from all of the meds you're ingesting). Please be sure to follow up with a hematologist/gastroenterologist. The last thing you need is to irreversibly damage your liver, following through on protocols that aren't regulated.

Melina said...

Hi LAH, I have weekly labs drawn that tests everything from my blood to my bone marrow to my liver. I also see an opthamologist- in fact I have quite the team of doctors that extends beyond my Lyme Literate doctor. I do appreciate your concern, but you must understand that currently, there is no regulated standard of care of Chronic Lyme. That's one of the reasons I am writing so openly about all of this. There needs to be more research and there needs to be a better option for treatment and for a cure. Until that day, the best thing we can do is find a doctor we trust and stick to their protocol.

Amanda in Seattle said...

Hi Melina -

Your last line resonated with me deeply. I have had 4 miscarriages in the past 2.5 years and there is so much emptiness inside my head and heart and womb. I have done everything to make this sadness easier to bear, but there is a blankness that covers so much of my life. I try and reason with myself that it will all be worth it some day because there is no answer to the "whys". Why me? Why now?

I wish for you hope, healing and light.

Melina said...

Amanda, I am so very sorry to hear this. I see your pain and I'm here for you ( if you need to vent to an online friend.

So much love to you.

Anonymous said...

Hi Melina, I would like to tell Amanda that my husband and I had five miscarriages before our treasure arrived. She's a thriving happy healthy ten year old now. There is hope for you, sweet Amanda, and for you to Melina. I know what love you already carry in your heart for your future children.

Bethany said...

You are always on my mind. Reading your blog though this horrible disease has been so eye opening. This is a serious disease that needs way more research. This season of your life is so different than how you imagined it would be, but I think this story is going to be so needed in the world. I know your healing is coming and your babies will follow. My heart is with you.

Sri said...

You know that song "I hope you dance"? Just like those lyrics go "when you get the chance to sit it out or dance.. I hope you dance" Today I am glad you wrote! The one time I wrote a few posts for a long defunct personal blog some anonymous commenter told me to divorce my husband. Lol. I know you have thicker skin than me and Lyme is riddled with controversy but trust me when I say anyone who has been sick knows. They really do know. No explanations necessary.

The blankness of the hours going by, the desperation, the inexplicable symptoms, the run around from doctors, the self doubt, the manic researching, second guessing the doctors then trusting them it's all part of this path to healing. I just want to give you a hug and say I might have been harsh also in my comments but please know it has nothing to do with you (I just hate trying to be sugary optimistic all the time) I am glad you are writing. Hold on to that.

Liz Stout said...

I understand needing to get the thing about their deaths out. God do I. And just reading it makes me feel like I got kicked in the stomach because I know that goddamn feeling about hearing of someone's death too well. Whitewater and otherwise. But you know that. Our conversation in the coffeeshop showed that we have similar feelings on the whole sad thing. Just...ugh.

I wish I wasn't so insanely busy right now. I'd drive down and just sit and talk with you and we could share photos and relive past adventures and pass the time sitting on the porch or otherwise just relaxing. I wish I had a teleporter and I'd zap you to Canaan to Dave's beautiful house. We could sit in the loft and indulge in tea; sit on the back porch and drink coffee and listen to the birds; we could wander through the field picking wildflowers, identifying them with a book; swing in the hammock and talk and laugh; and nap...because naps are basically the greatest thing ever.

I'm so glad you were able to write today. Thank you. Let me know, please, if I can do anything for you. If you have snapchat I am amazingly adept at sending completely silly things that will make you laugh if you need some laughter.

Hugs. Love. And all of the positive feelings, vibes, and karma to you. <3

Ashley said...

Sometimes we have to say it out loud because holding it is too much to bear. Sometimes those words help someone else through a confusing, scary time. You keep on writing-and I'm sending love to all of you-the beautiful boys gone too soon, their families, and their friends.