Three women share their brutally honest stories. Unapologetic and forthright, Carmen, Jody and Kilee tell it like it is with fearless openness. Their bodies are but part of the story.
By Carmen Hartgerink
When picking out your clothes for the day, have you ever needed to stop and think about how much pain they will cause you?
As of now, I’m a stay at home mom to my beautiful little girl. After a life-threatening series of events last April, I have 0.016% of my small intestine and 66% of my large intestine left. I am now trying to figure out life while being attached to an IV bag 12 hours a day, chasing my toddler, and trying my best to lead as normal of a day-to-day life as possible.
During the winter, my skin becomes so sensitive during the cold months that even a pair of jeans becomes intolerable. This got me thinking that I should do a blog post about how it is possible to be comfortable, in as little pain as possible, and yet still be fashionable! Thankfully I was able to get help from two other of my Spoonie Sisters.
There’s Sarah! Sarah likes to say that she has Alphabetitis. Her diagnoses include Myalgic Encephalomyelitis, Rheumatoid Arthritis, and Neuroendocrine Tumours, to just name a few from the extensive list of ailments she battles with. Our friendship has become stronger as we are able to relate to each other. We know that we can cancel on each other at any time and the other doesn’t get upset. We get it. Sarah pushes herself as much as she can to have a fulfilling life; giving everything she has to her passion of art and food, and to her husband and two beautiful girls. Seeing her face beam as she modelled dresses recently was just amazing! One afternoon of feeling like a star makes it all worth it.
Catharine, one of my other Spoonie Sisters, has recently been diagnosed with Ehlers-Danlos Syndrome. It’s a connective tissue disorder which leaves her joints loose, causing them to dislocate often. Her muscles are also constantly tense, to compensate for her joints’ slackness. Catharine has moments where even being touched is too much to bear. Every time I see her, she’s got a huge smile on her face despite her unbearable days. It’s not hard to be infected with her attitude.
And then there’s me! I have had Short Bowel Syndrome for nearly two years. I have a central linegoing into my chest that my IV nutrition gets pumped through, five nights a week. Now you may ask, how in the world do my bowels affect the sensitivity of my skin and the stiffness in my joints? I don’t actually know, but my guess is that this is my body’s way of reacting to the trauma that it endured back in April 2015.
Doing the photo shoot for this article made me feel good about myself. I felt gorgeous! We had so many laughs. We enjoyed ourselves. For one afternoon, we could forget about our illness and truly enjoy ourselves. And these moments really are few and far between when you’re constantly fatigued and aching.
Carmen is a stay-at-home mom and before that she worked in a group setting with folks who have developmental disabilities. She is a contributor to
The Mighty and writes a blog called A Gut Feeling, which can be found at carmen.hartgerink.ca. Reprinted with permission from Carmen Hartgerink.
I’m different but I’m valuable
By Jody Allard
For everything I can’t do, there are a dozen other things I can. The difference is that society has taught me to value productivity over character.
There’s never been a time I didn’t know I was different — or at least not one I can remember. As an infant, I instinctively reached for things with my fingerless right hand and screamed when I couldn’t grasp them. But I don’t remember the frustration or rage that came with losing something my brain expected to be there.
I never struggled to keep up with my peers. My fingerless hand didn’t prevent me from doing anything more meaningful than cutting my own steak. The problem was that, no matter how much I could do, I was still different. I did my best to blend in and assimilate, but my missing fingers always gave me away.
As a child, I had an innate sense that I should be just like everyone else, and I bristled against the knowledge that no matter how hard I tried I would always be different from—less than—my peers. It took becoming disabled as an adult to make me wonder who I would’ve been if I hadn’t spent my life trying to be like everyone else.
My missing hand wasn’t my only health problem. After a lifetime of multi-system symptoms, I was finally diagnosed with mitochondrial disease in my early 30s. Mitochondrial disease is a disorder of cellular energy production. Like my missing hand, it’s a genetic condition.
Before I was diagnosed, I was a master of pushing through. I took the stairs to prove I could, even when I had to spend 30 minutes recovering after my co-workers cheerfully went back to work. I worked 70-hour weeks and raised multiple kids while attending law school in my free time. I was a doer, always taking on projects and responsibilities. I never let my declining health hold me back until I couldn’t push through my symptoms anymore. Eventually—after I landed in the hospital multiple times, and was struggling to breathe, my doctors told me it was time to take a break. After months, and months became years, I finally had to accept that my health wasn’t going to improve. I was in my early 30s yet my physical therapist wrote in my chart that I had the strength and balance of a woman in her 70s.
Kicking and screaming, I left my job. I took a medical leave of absence from law school three years in a row, until they gently told me I’d reached the limit. I couldn’t conceive of a life that had purpose or meaning without work, and becoming involuntarily unemployed sent me into an emotional tailspin.
Today, I’ve had four years to come to terms with my own diagnosis. It hasn’t always been a smooth road. I’ve raged at every god I don’t believe in and hated my disease and myself. I’ve sneered at disability-positive campaigns and rejected them as platitudes and denial. I’ve struggled with my self-image and my self-worth, and there’s been no part of myself that I haven’t scrutinized. But after all of this soul-searching, I know one thing for sure: my health has never been the problem.
There is nothing romantic about disability. With it comes pain and hardship, poverty and struggle. But these are systemic flaws, not character flaws. I lead a rich, satisfying life with my limitations —not in spite of them.
I won’t pretend that my disease isn’t difficult or even sometimes intolerable. I wasn’t able to work for five years. I can’t run or hike or climb or even do all of my own grocery shopping anymore. But for everything I can’t do, there are a dozen other things I can—whether it’s working or caring for my children or even just caring for myself.
I wonder now why others told me to hurry up instead of slowing down to walk beside me. My path is uneven and sometimes winding, but it’s a path worth travelling. Being different isn’t catastrophic: it adds nuance to our conversations and perspectives, and it makes our communities more interesting. I am not defined by my disability, but it has shaped me.
I had seven children long before I knew I had a genetic disease. All seven of them have ten perfect fingers and ten perfect toes, but only time will tell whether some, all, or none of them have inherited my disease. When I first learned that I could’ve passed my disease onto them, I nearly collapsed from the weight of my guilt. I blamed—and perhaps even hated—myself. But, eventually, I began to ask myself just what was supposed to be so terrible about ending up like me. I’m different, but I’m valuable.
I don’t worry about whether my children inherited my disease anymore. I know that life has meaning and joy no matter how our cells function. My kids will forge their own paths and find their own joy, whatever that might be.
I don’t regret my disability or even my missing hand. I no longer have any desire to be just like everyone else. Who I am is good enough, and my differences have woven their way into my character, building me into the person I am today.
My only regret is that it took me 38 years to recognize it.
Jody Allard is a former techie-turned-freelance-writer living in Seattle. She can be reached through her website (jodyallard.com), on twitter (@sendvodka) or via her Facebook page (facebook.com/Jodyallardauthor). Reprinted with permission from Jody Allard.
How I Opened Up to My New Boyfriend about My Scars
By Kilee Brookbank
Getting close to someone new is always a difficult thing to do, whether it’s with a friend or a significant other. It is not unusual to feel scared and worried about opening up—particularly when you have a unique physical appearance, as I do.
I’m a burn survivor, with scars covering my arms, legs, and back. So when I started college last year, I knew I’d be meeting new people and facing questions. What I didn’t know was that telling my story would be easier than I expected—and that I would meet someone very special right away.
I met Alec the day we moved into Xavier University in Cincinnati for freshman orientation.
As we spent more time together, Alec was brave enough to ask me, in the nicest way possible, what had happened that caused my skin to look different. He already knew what skin grafts were. I told him about the gas explosion at my house, when I was 16 years old, and about my recovery over 38 days in Shriners Hospitals. I told him about my book, Beautiful Scars, and about how I’d spent the previous summer meeting with other burn survivors, trying to inspire them to get through their toughest times.
Thankfully, he took things very well and, a year later, he is comfortable asking questions and loves me for who I am and all the history I come with.
My advice to other women:
• Having a positive body image is so hard, and I want to encourage other women to just be brave, comfortable and confident!
• Shake off rude people and surround yourself with people who are proud of who you are.
People can look at you and judge you all they want; at the end of the day, they don’t know what you have been through and have no right to judge you for your appearance.
Your body is part of your story, and your story is something you should be proud of. We’re all always growing and changing. Striving to become the best person you can be is what makes you truly beautiful.
Kilee Brookbank is a sophomore at Xavier University and the award-winning author of the book Beautiful Scars: A Life Redefined. Through the Kilee Gives Back Foundation, Kilee has raised more than $150,000 for Shriners Hospitals for Children-Cincinnati. Learn more at KileeBrookbank.com. Reprinted with permission from Kilee Brookbank.