Tuesday, June 21, 2016


this post is written in gratitude to Linda Sharps, whose bravery inspires me daily

I'm beginning to feel different than everyone. Not lonely, but apart. There has been this aesthetic trend in the past year or so, you see it on social media mostly, to display a life that appears dainty and muted, every tiny detail presented in a manner that is off-handed yet quasi-sacred, rustic but always so very dainty. It seems as if there are whole armies out there of slightly more lackluster Gwenyth Paltrows, faces covered by the oversized brim of a sunhat, eating a tiny meal at a long white table decorated with neatly folded linens, populated by a dozen or so beautiful if slightly wan looking thirty-somethings.

From the looks of it, their sweet and effortless lives involve plucking a single daisy and poking its long, slender stem into a milk-glass bottle, wrapping babies origami-style in swathes of fabric, catching on film a single chip of rainbow light, cast from a twirling prism, as it journeys across a vast white wall, re-wrapping the babies, perhaps a single leek for lunch, or a lilac-tinted endive clutched in a child's small and earnest fist, extended and photographed against the same ocean-wide white wall.

I'm envious. 

I'm envious because I can't even stage that kind of existence, much less live it day in and day out, and it seems so very tempting. Even with its all its irritating qualities, it's faux-humble gentility, it still manages to somehow appeal to me. How pretty and soothing; how far from my grasp. 
join us on Instagram @thewildercoast
Everything in my life right now is so vivid. That's the only way I can think to describe it. I woke up a few nights ago with a bright red eye, a yellowish, blood-tinged tear slowly oozing down the side of my nose. You hardly even notice these things anymore. The cystitis has returned with a vengeance; I sleep with an ice pack between my legs. It's hard to appear dainty when you sleep with an ice pack between your legs.
We drove to Vermont a few days ago, stopping for the night at motel outside of Harrisburg whose blinking neon sign was barely ten yards away from the shoulder of I-81. For the first time in my life, I fell asleep in the bathtub. The next morning as we rolled North the landscape grew brighter and brighter, until by the time we arrived at my parents' house the world appeared as if in technicolor, ebullient and buzzing with insects, croaking with frogs, the sky blue and marbled with traces of thin white clouds. The peonies in the garden were fat explosions of magenta, their stalks bowing under the weight of their incredible feathery heft. The fields surrounded the roads and houses in a haze of tall, citrus-hued grasses.
 David and I spent the first few days in New England constantly seeking out water. Swimming has become an absolute joy, an escape from ubiquitous pain and the only time when my heart doesn't thump against my chest like an angry rabbit. When my vision softens and fades around the edges I look for a body of water in which to dunk my head, open my eyes beneath the surface and enjoy a world that's always blurry and cool.
When I'm fully immersed in fresh, living water, the weightlessness and ecstasy of the experience overcomes me and I'm flooded with intense feelings of coziness and contentment and goodwill. The feeling of pulling myself out of the cold, clear water of the quarry and pressing my body against a slab of sun-warmed granite on my stomach is better than opioids. Swimming is a temporary cure but it is a cure nonetheless.
 We've swam in the clear blue hole beneath the iron bridge in downtown Woodstock, where the perfectly manicured lawns slope down to meet the river, and every now and then a figure will pause on the bridge below us, wave and point a camera. We've floated around Silver lake on two air-filled tires, dipped below the pollen that dusts the surface of the pond like powdered gold, jumped off the shattered shale on the steep banks of the Quechee Gorge into the icy, dark green river.
Maybe on day soon, I will have my slender daisy in the milk-glass, a quality of airy cleanliness that follows me like a soft mist, a life free and clear of the small, perpetual horrors of Lyme disease. 

For now there is the crush of pain against relief, bright and rough, the cold shock of river water that swallows and protects me from the burning day and the treasured moments of joy and calm that blink like fireflies against a black summer sky. My life is filled with mess, filled with uncertainty, full of treasure. 
join us on Instagram @thewildercoast
If you'd like to help me get free of Lyme disease, here is how to help, and here is how I will say thank you.


Shanda said...

I hope this time at home will lead to healing.

Aimee said...

Ok, I don't comment often but today I'm going to.
Please remember what you *see* on social media isn't the full *real* of people's lives. It's not the whole. It's not true full picture. It's the parts they want you to see. For whatever reason. Sponsorship, self promotion, their own struggle through life where an single image of beauty can shout 'win' in the middle of complete chaos. The chaos is there, we just don't see it, out of the frame.
It is unhealthy and unhelpful to compare our own lives to those little 2x2 cropped images, or the stylised blogs or articles.
I regularly pop a single geranium stem in an old bottle in the centre of my shiny white table, on a hand made trivet with a sunbeam on it. I decline to show the washing piled on the sofa. The dirty dishes in the sink or the child in tears because homeschooling isn't always as easy as I hoped. I don't blog about infertility, or crippling self doubt, or the depression that floats like a cloud threatening to settle over my happy existence.

The truth is that due to social media, we are all lonely at times. We all stare at images of seemingly unattainable calm and beautiful lifestyles.

I'm not dissing social media, there are blogs and insta's out there that are real and true and hold solace. But nothing in the world beats a real person, sitting at their table, surrounded by browning apple peel from baking, washing piling on chairs and that inevitable hunt for a clean cup to serve tea in. That is real and true and an anchor in the overly perfect, white and sparse, rose blooming, Reyes filter world that we see so much.

There's no comparison. You are beautiful and strong and fighting - every second of every day.

Maureen said...


My heart aches for all that you are going through. I wanted to pass this along to you and suggest that you contact Johns Hopkins and the NIH to see if you could participate in their studies. I have 2 friends who have done that with the the NIH 2 separate health issues (one is Schizophrenia for her son and the other is a condition called POTS). They have received free world class treatment for several years. I'm not sure if this is the case with Johns Hopkins, but it might be worth a shot. http://thehealth99.com/johns-hopkins-launches-first-u-s-center-to-study-lyme-disease/

Melina said...


very very very helpful. THANK YOU.

Maureen said...


Did you see this? https://www.niaid.nih.gov/volunteer/lyme/Pages/default.aspx


Maureen said...

Here is a list of lyme disease clinical studies that NIH is recruiting for:

Gabby Bendel said...

you have a great sense of humor!

that first paragraph could be used in a comedy set ... because who wants that life? i mean, i do ... to a certain degree. like, i suffer from severe adult acne and i would love their skin - those people never have blemishes. could you imagine gwyneth paltrow with a cystic breakout on her chin? never ... there are more chances that honest-to-god pigs would fly than that happen. so, yes to muted skin. no, to muted anything else. (or not)

you're always in my thoughts and i send you positive thoughts and prayers.

Kirsten Gardner said...

Your butt looks amazing! So you always have that going for you. Wan 30 somethings that decorate with single flowers and eat single leeks do not have glutes to kill for. Thinking of you and sending you love. I will be in North Carolina sometime this fall and would very much like to drop by and see you!

Melina said...

@Gabby I LOVE your honesty!!!! World needs more of that!