THE FACES OF MESH: A Fairy Tale and a True Story – An Update on Linda KilpatrickSep 18th, 2013 | By Jane Akre | Category: Patient Profiles
by Aaron Leigh Horton
A note from the author:
Before the publishing of this story, but after its writing, I received a letter from Linda Kilpatrick. I’m still not exactly sure why, but I cried from a deep place in my gut for an hour after reading it. I called my husband and my mom to try to gain some clarity. The part I want to share with you is important, because Linda is somewhat of a public figure in our small but growing “mesh community,” and she has put more effort into loving the injured than I think any of us will ever comprehend. There is no adequate repayment we could ever give her but to respect her wishes. I know I speak for many when I say, “Thank you, Linda. We could not have gotten over this chasm, closer to each of our individual truths without you.”
“You told me your mother has been living with her own mesh hell for a few months longer than me. I don’t think you realize that three years ago I began writing a blog because I did not know what else to do. I have listened to absolutely hundreds of women over the phone tell me their painful stories. I have read countless more I received via email. I carry their pain in my brain and I am at the end of my rope. I cannot do it anymore. So I have just written a blog to let all the women know I must take a break. Perhaps that break will be a few months, perhaps longer. I don’t know. But I am going to offer you a chance to take over my blog and give help to those who need it.”
After my cathartic cry, I happily accepted her offer, as she and I are in different places in some parts of our lives, though we share many of the same spaces and places in other parts. You will still find her creating, designing, writing about her inspirations, etc. but I will take over the blog writing to all of you, who need a shoulder, and a friendly ear or just some place to read your story through the eyes of another.
From Linda’s blog, you will now be directed to mine. She will still be available as a guest blogger on my site from time to time, so we’ll all still benefit from her wisdom as she heals and tries to create a life focused less on mesh and more on the things she loves.
Please take this time to follow me here:
My WordPress blog: themeshwarrior.wordpress.com
On Twitter: @themeshwarrior
Linda has written also written an update about why she’ll be taking a break.
Please read it before reading my update on how she’s doing.
Thank you. I look forward to getting to know many of you.
Time for a Well-Earned Break, by Linda K.
THE FACES OF MESH: A Fairy Tale and a True Story – an update on Linda Kilpatrick
by Aaron Leigh Horton
It’s 5:25 a.m., and it’s official. I cannot sleep. Again. After a long drive home last night and getting to bed at 1:30, I’ve been wide awake since 4:17, the familiar wasted efforts of trying to convince myself that I can go back to sleep have been in full force for more than an hour now. Often some of my best writing comes after that sleeplessness, in the early morning while my abrasive and slanderous left-brain is still numb. I can hide from it in a secret room writing away, no worry of its criticisms. But this morning, it is alphabet soup up there. Rolling around between the two holes in the sides of my head are favorite quotes; visions for designing a tree house; bits and flashes of memories, not yet fully formed and set; notions about my future, my family’s future; the music of a song I haven’t heard in a long, long time.
Ahhhh. . . now I recognize it. It is the Muse of Inspiration. She is a mythical creature who visits from the heavens when she wants to, not to be summoned upon my whim, not to be tamed while she visits. I’ve learned to listen to her. I get up, make coffee and find myself reaching for the most delicate cup in the cupboard along with its matching saucer. “Hmmm,” I think sleepily. I decide to sit outside on the east-facing balcony to watch the sunrise. My thoughts begin to take shape with each hue of morning orange, and my fingers start dancing across the keyboard.
I said the most important sentence I’ve said in quite a long time yesterday:
“Thank you for changing the way I see the world,” I said to Linda Kilpatrick.
On Texas Highway 290, between Houston and Austin, there lives a mythical creature of another kind, with what some would call a bit of a quirky life. I call it a magical life. Linda and her adult daughter, Kim, are imaginative and talented in every way conceivable. In fact, their combined creativity can hardly be contained in the home they share. Many of you know Linda, but for those who’ve not yet had the privilege, read MND’s first story about her and her experience with mesh complications here.
As a mesh-injured woman, living the daily saga and all it entails for what has been more than three years now, her spirit is still so bright that I cannot imagine how the mesh has dampened it, even though I’m sorrowfully certain it’s true, for the mesh is monstrous; it weaves itself through bodies, spirits, minds, families and futures.
Linda has written an extensive, very personal blog about her mesh complications, shortly after her implant surgery as she explored what could be wrong. Reading through its many entries, you will discover it’s not been easy for this well-traveled, resourceful and determined lady. She would add to that list, “stubborn,” partly because she continues to refuse any narcotic medication for pain management, instead relying on a well-honed regimen of natural supplements and foods, which she is adamant do control her pain. In fact, we (as honorary English persons) shared a sitting to tea at least three times during our day together. Our green tea is packed with powerful antioxidants, and we feel as though we are participating in her healing just to be drinking it with her. Although Linda suffers daily pain, she still has a zest for life, and seeing life through her eyes has changed me forever – in my DNA somehow, at my core.
I have come to visit Linda to find out how she’s doing after the last 11 months of procedures, from a full mesh explant by Dr. Shlomo Raz to two follow-up surgeries and a very serious pseudomonas infection, a time wrought with numerous trips to the emergency room. Despite or maybe because of that, Linda is making it clear that those details will not be our focus today. Our focus will be making things we love, and she and I share the love of creating fairy dwellings- yes, tiny dominions for winged and mischievous, mythical creatures. Who knew? A 66-year-old Englishwoman who lives in the countryside and a 38-year-old Texas native and city-dweller find equal delight in the same unusual diversion.
After Kim prepares a breakfast worthy of any of Houston’s finest restaurants- perfectly-poached eggs, fried green tomatoes and a side of bacon- our morning progresses, and I am sketching a delicate fairy tree house, one that my mind has imagined to almost every detail. But a single thought continues to invade my focus and play.
So that it will recede with assurance it will not be forgotten, I assuage it with a silent, but formal, contemplation:
“Every single mesh-injured woman I have ever spoken with says, ‘I just want my old life back- back the way it was.’”
I hear this plea almost daily, and I fear for the hearts of those who speak it, because I’m closer than ever to the belief that it’s not possible. Not because I lack belief in the impossible, but because I cannot comprehend how one could live through this horror- the years of chronic pain, multiple revision surgeries, financial ruin, dismissal and invalidation by others- and somehow come out on the other side of it all “with the old life- back the way it was.”
Linda’s life is not the way it was, but it is certainly a delightful one, and she’s carried the good elements forward. Still it is wholly new; many of her long-held beliefs and paradigms have been shattered by this journey. How did she get this new life in which she genuinely lives with joy, satisfaction, gratitude, happiness and hope? As the daughter of a mesh-injured woman, many of my own worldviews and paradigms have shifted too, and I’ve been pondering these changes for several weeks. Another new paradigm to replace the old comes into focus even at this very moment:
“There is no life to ‘go back to.’ There is only a new and different life available now- but for the taking.’”
I ask her, “How did you get to a place mentally where you were able to consider a happy life after the terrors of the mesh entered it?” Without looking up from our joint project she says:
“I am at a crossroad. For the past few weeks I made myself get out of my bedroom and back into life here at home. I am absolutely sick of being sick. It’s not been easy because I look perfectly fine. But I am not. I am mesh-injured and live with pain every day. I just don’t dwell on it and I must find other ways to prevent myself from doing so. Lying in bed so many days, I began thinking how much I wanted to live again and if I did not try hard I would die much sooner than I should.”
Her voice emphasizing that: It, this new practice, must be done. She is resolved, not resigned. I believe fully now, upon what feels like approval from her, “Shattered paradigms have to be allowed; long-held beliefs have to be replaced with what is now true today, or you can die. Even if your body doesn’t, your spirit will, and eventually your body will follow.”
She does look perfectly fine, as do many mesh-injured women. Her beautiful long, red hair, coiffed to the side in a ponytail with a big purple bow compels in me a big, wide smile with my whole face and my whole heart. I want to believe that she feels as put together as that bow. But I know she doesn’t. Upon seeing her for the first time in a few weeks, I recognize that glow of determination and the triumph in her eyes; I appreciate her mischievous giggles when I burn myself with the hot-glue gun (more than once); and when we celebrate our shared love of food at the table that Kim has literally just built. I want to believe that nothing in her hurts, not even in her soul. But all these externalized joys belie the reality of the shared pain and fears- of mother and daughter. I recognize it in their eyes. It is mine and my mother’s own daily struggle.
Aaron’s Fairy-House Lessons
Linda’s answer to my question begins to sink in and I realize this place in time is a fantasy for me- like going to Disneyland for the first time, my eyes wide all day with glee. But her vision is and has always been much grander. She wants to move forward, beyond the mesh, beyond even her grandest dreams; the ones conjured before her injury. Her imagination is so evident and vivid that it envelops us during our play, and I am brought into her world.
She has been prolific as an artist; even while severely injured, I suspect, by gaining access to a new Muse with a different name, maybe one she’d never before met but was willing to follow.
You will not want to let this seemingly-childish pastime or the levity of making fairy bedrooms with tiny mushroom bedside tables holding tiny teacups for enjoying tiny tea times, fool you into a belief that Linda’s life is a fairytale or that her thoughts are superficial or frivolous. Monumental shifts in one’s thinking can and do happen under this guise of fiddling. If Linda is talking, about enchanted creatures, mesh, or whatever else you will find it best to listen, lest you miss a pearl of wisdom to your own folly.
Mouth agape, I am overwhelmed as I examine her well-appointed studio. She is shepherding me through its wonderfully-organized sections, her injury visible only in her slightly off-kilter gait coupled with the almost imperceptible, occasional search for a surface on which to lean to still the constant vertigo.
As she escorts me to various collections of materials, I am fascinated still more: hundreds of tiny drawers filled with buttons, beads, sequins, glitter, feathers, thumbtacks, embellishments of all sorts, and thingy-mabobs, for which I do not yet have names. As we pass each tiny box of treasures, she is repeating this or that was bought at 75 or 90 percent off at Target or wherever, and at first I don’t understand this habit. I later surmise that it’s important to her that I grasp that she is living frugally and is able to do so with little more than ingenuity, imagination and elbow grease- exponentially compounded, of course, by the support and skill of her very capable daughter. In Kim, I recognize eyes simultaneously filled with a profound pain from this journey, but pain that is crowded out by a child’s pure love for their parent.
Kim goes to great lengths to help Linda carry out her visions of grandeur, sometimes driving all over the quite-large city of Houston, buying what we all laugh many times during the day, might be a ridiculous amount of tiny mirrors that were .5¢ each at King Dollar or two grocery bags full of deeply-discounted human-size dishes for the grandest vision of all – their Bed & Breakfast. Their shared vision is a unique boutique hotel, where some day the mesh-injured and those looking for respite from the other evils of this world, will come for vacation to be well-fed, treated magically with an unusual love and respect, and given an uncommon opportunity to be forever changed for the better. And- those visitors just might learn a thing or two, as it’s clear to me that Linda’s heart is that of a true teacher. She appears to live for the gain of knowledge, solely for the purpose of giving it away, and she’s instilled this value in her beautiful daughter as well. An Englishwoman from a large family living in post WWII England, and a widow for many years now, the horror of mesh has not been her first major shift in paradigm or the first time she’s had to use her equal talents of determination and inventiveness to make life happy again.
I was so grateful for a second invitation to visit the duo, because their lives are so rich and full that I was overwhelmed (in a good way) and found it challenging to absorb during my first visit. As we continue work on my first fairy tree house, she says in her beautiful English lilt, with a wide grin about her, “You’re a Magpie, aren’t ya?”
“Well I s’pose I am,” in say in my own West Texas lilt. It’s true I’m attracted to everything shiny in her room of tiny riches, and I have been chattering away, uncensored, about it the whole time. But I am not offended, for I know she offers it as both a compliment and a bit of a ribbing. If proper English women were inclined to do so, her elbow would be firmly planted in my side. Her sense of humor must be part of what keeps her in that mental place where life can be enjoyable, despite the mesh and its range of side effects from unpleasant nuisance to downright dreadfully agonizing pain. For her, that spectrum ranges from extreme discomfort upon sitting and standing to self-catheterizing every night and a constant shake in her hands that often frustrates her attempts to work with the tiny objects she loves so.
Two Magpies in a room together can be quite a scene. As she’s pointing and teaching, she is rattling off words I don’t know, and through her English accent, are sometimes pronounced quite differently. We are working together on my fairy’s bed, which I’ve insisted must hang from the ceiling by tiny, glittery-iridescent “ropes.” Her hands are shaking as she manipulates tiny eyelets,
“Sometimes a Miniaturist can become quite frustrated.”
“A what?” I say.
“A Miniaturist– you know, someone who works with miniature-sized objects.”
“What?!” I exclaim again, now understanding her pronunciation and overcome with a new, stronger sense of elation. This is way past glee.
I call out to my husband in the next room, “Honey, there is a name for what I LOVE TO DO! It’s called a being a Miniaturist! I AM A MINIATURIST!! Not just ‘Someone –who-likes-all-very-tiny-things-that-are-usually-much-larger!’ I AM A MINIATURIST!! I AM A FAIRY MINIATURIST!!!!” I am like a homing pigeon, who has found its brood. I didn’t know there was a name for this preoccupation with all things teeny-tiny. And again, with a single word, she has brought a priceless amount of joy to my heart. I hear big laughs coming from the kitchen, as my husband and Kim have just come in from outside where they’ve finished up some projects of their own. See how Hubby can mow, a look of manly joy spread wide across his face!
Hubby knows me all-too-well and, after coming in from his self-described “country-strong” project, he is glad to have fodder for good-spirited name-calling, slightly pejorative but loving nonetheless, “You, you- MINIATURIST, you! I actually MOWED something.” And Linda and I look at one another and offer a healthy chuckle with big smiles.
When I say you’ve never met anyone like Linda, it is not a writer’s cop-out sentence to fill a page. It is absolutely, unequivocally, 100% true. And I don’t even know you or whom you’ve met.
After a while, we eat again- a beautiful lunch of Shrimp Enchiladas- prepared for us by Kim, who’s eager to share her recipe, and like most of her other projects, she’s figured out how to make her favorite restaurant’s recipe at home, in her own way.
I feel like royalty; you could say I feel like the guest of a Bed & Breakfast proprietor. I feel more treasured by these people who I’ve now been face-to-face with twice, than I often have by friends I’ve had for years. It’s clear Linda and Kim enjoy all kinds of people and conversations. They are happy and moving toward happier. They are making a new life that works for them. They are not searching for an old life to go back to, because they know it simply isn’t there. And more than anything, I find in my visits with Linda that she can be defined most profoundly by one sentence: she will change the way you see life, if you will allow it. In a seemingly incongruous comparison, it’s not unlike the mesh itself. One-of-a-kind people and one-of-a-kind experiences will change you, in good and bad ways of course, but we are not without CHOICE.
As a family member, I have a life to “go back to” and my time with Linda has made me less fearful of this reality, more hopeful that the new can be better than the old in some way. And if she can make me believe in fairies, at least for long enough that we can both forget about mesh for a while, then I think she could make me believe darn, near anything.