Tuesday, June 7, 2016


This one is for Ashley and Dan, in gratitude. Dave and I love you both.
(You can catch up here, if you need to.)

It's a small thing, a scheduling error, but it leaves me crying over the sink, rotating the sponge in circles on the plate like a record player. I am a record player, my chip of diamond catching in the groove and repeating, repeating, repeating.

We do something wrong, my husband and I, we forget about a work obligation and so we have to cancel the weekend plans. It is nothing, nothing out of the ordinary, but just enough to splinter the thin exterior gloss that we skate on every day, and we fall through. For a moment we are suspended in that bleak space below the surface, acutely aware that since we cancelled the weekend plans, it means I will have been almost completely homebound for three weeks. David has done nothing but go to work and come home and I have done nothing but the dishes, the dog's daily walk, the shuffle of pills from orange bottles to plastic squares to my own throat, morning and night, a glass of water. Repeat. Repeat. Repeat.

This below-surface world is darker than the one we have tried our best occupy for the past year, and cloudier. On the surface we are bright and buoyant, we speak of this disease in terms of the lessons we've learned and the gifts we have received, both of which ripple through the landscape like thin veins of sparkling gold yet still this place is one we would both leave behind in an instant, given the chance. We discuss the future as if the cure is not just inevitable but close, out of eyesight but certainly, so close. We have come so far, we have made such progress and that keeps us afloat- doesn't it? Haven't we?

We have come to understand, by now, that things are decidedly more complicated than we thought they would be. We like to tell ourselves that we are moving forward, a slow yet gradual climb but really, time inches forward in a tedious spiral. We move in these slow circles and after completing each rotation we get a little bit further from where we started, yes- progress!- and yet our life is still composed of circles. Over time, the looping makes us feel a little bit insane.

We shuffle our schedule, I hang up the phone, mark the calendar, and then lock the doors to the house. Alone, I return to the sink and start to cry, my voice high and sing-songy. I consider kicking the cabinets but decide against it. The tears dripping down my face feel almost indescribably soothing to my eyes, which are swollen and infected by Bartonella, Cat-Scratch Fever. Tears are probably the best thing for me right now. How funny. Maybe crying is the medicine I need- not in some trapped-bird release metaphor but in terms of chemistry. And these days, I'm much more invested in the chemistry of recovery than in anything less tangible.

I am not in remission. I have a good week but then I catch a virus, just a little virus with a fever and swollen glands, how quaint. But while I wait for it to pass I have to pause my other medication and that is the very last thing I want to do. I do not want to stop this train, I want to run it off of the cliff and be done with it.

While we wait, we baby my liver with Milk Thistle and Glutathione. We're keeping close tabs on my liver with CBCs, but my eyeballs remain stubbornly bloodshot and opaque. What is it, the Bartonella, or the medication that we use to combat the Bartonella? Do we tiptoe backwards, carefully and apologetically or do we keep plunging ahead? That's not a question I'm asking you to answer. I just need you to know the type of thought that consumes me on the days when you don't hear from me. Please try and trust my team of doctors. Please try and understand how tricky this is.

I have spent long hours in the past few months embarrassed that my life has shrunk down to the size of a city block. How paper thin my excursions have become, how witheringly repetitive I must sound. But then I'll drink a cup of coffee and stumble down the road with the dog in a caffeinated haze, perky and taking pictures of clouds, and I'll return home with some five-cent profundity about what a meaningful thing it is to live so close to home. 'I look deeper now,' I'll chirp. 'Not further- deeper!'

But that's not real. Not to me. It is cheap for me to say that because that is not how I feel.

But here is the one thing that I have realized: it does not matter how I feel about my circumstances. Whether or not I feel satisfied by what constitutes my days- it does not matter because I am not entitled to anything more. I did not move willingly from the world of the healthy to the world of the sick, but then again, nobody does. Any moment of grace or joy that I find here is treasure, and I have found more of that than most people because I have been absurdly, obscenely lucky.

I thought I was owed more. My life until now has been so clear and carefree that it was easy to imagine that it would all continue to roll forward like that. I thought I was entitled to so many things, my health included, simply because I wanted them. But I was wrong. Thank god I'm finally beginning to understand that.
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.


Cassie said...

Are you a hug person? If so, sending you the biggest best hug in the world. I hope you can feel it.

Melina said...

Yes. I would love a Bear Hug. Thank you Cassie. xo

Sharon Smith said...

I would also hug you! A long hug.

Jess said...

Someday I'll come to Asheville and take you out for juice or coffee and we will explore the small spaces, and I'll give you a long hug and a willing ear. You are so not alone in this. Love to you from Chicago, as always, my dear! <3

Sundry/Linda said...

I hear you and understand the words and the feelings behind the words. Some maybe-comfort from the poem 'Having it out with melancholy,' which was written about the illness of depression but she weaves in a lifebeating thread of hope:

Easeful air
presses through the screen
with the wild, complex song
of the bird, and I am overcome

by ordinary contentment.
What hurt me so terribly
all my life until this moment?
How I love the small, swiftly
beating heart of the bird
singing in the great maples;
its bright, unequivocal eye.

Anonymous said...

I read this post a few days ago and in the back of my head what I was thinking was that in some odd way maybe this is just preparing you for something ahead. Like maybe this gets you ready for the day (I hope and pray) that you become a Mommy! At least for a little bit of time before they are born and while they are just newborns, your world becomes very small and focused on you and the baby. Your body is not your own goes through the most dramatic changes. From your head to your toes, everything can be affected. Emotions can change in a moment and you can be feeling grateful and insane all at the same time.
Not that you should have to go through such an ordeal to be prepared for motherhood. Surely, most people don't and its not fair that you should have to. But maybe thinking of things this way will give you something positive to focus on. Its so hard now, but the future you have ahead can be bright and you are building an incredible strength to meet any new challenge that comes your way.