Safe Spaces and Representation in the Disabled Community
Updated: Feb 14, 2021
When I was a teenage girl struggling with the complicated reality of living with a chronic pain bone disorder, a well-meaning loved one made this comment in response to something I said:
"You are so brave. You experience pain every single day of your life, and you're still smiling."
At first I became reactive. I detested being told I was brave. It made me feel like I had to be quiet about my fears, because if I wasn't quiet...then I wasn't brave, was I? And each time I expressed my pain or fears, I would be told this. You are brave, Jessie.
At the time, I was expressing my heartbreak over feeling left out of the seventh grade camping trip. I wasn't able to participate because it was technically a sports camp, and I was recovering from another MHE related surgery.
In that moment, I felt incredibly hindered by my disability. I felt alone, left out, misunderstood, and angry. I wanted to be on that camping trip, too. I knew my friends were all bunking together, having the time of their lives. My two older sisters had also gotten to go on this trip with their peers, and they'd raved the whole time about how fun it was.
But when I vented to my loved one and they responded with the above remark...
I stopped. It was a double edged sword; a compliment in the highest form. Brave. I wanted to scream at that word, and uphold it. I wanted to be what they saw when they looked at me, but it was hard, damnit. It sucks being the only one in your grade to miss out on a class trip, and I just wanted to cry about that and not have to feel guilty or worry that I wasn't being brave enough.
Then this person shook their head and explained it to me:
"We don't call you brave because we want you to be quiet about your feelings and fears, we call you brave because you are honest about them. We call you brave because despite the pain you are clearly in, you're still smiling. You're still connecting with the world around you when you could just as easily let the tough parts of this life consume you. That's what makes you brave."
Anyone who knows me would describe me as being "bubbly". My family, friends, hell...it was on every single report card that got sent home. I was the happiest baby, the sweetest toddler, and the most compassionate student. I used to volunteer at a local recreational group for the developmentally handicapped for fun. I managed to get all of my high school volunteering hours finished within one week of camping, and then I spent the next three years volunteering my time because it was one of the most incredible experiences of my life. I made connections to a lot of different members and volunteers, and we had the best time camping, and those incredible human beings taught me so much.
Living with my own medical conditions and limitations, I could easily relate to the members of the recreational group. I drew inspiration from how happy they always were. They loved so freely, and laughed with a kind of carefree abandon that instantly put you in a good mood, no matter how shitty your week or day had been prior. It was why I loved spending so much time there. The experience reminded me not to sweat the small things and to always appreciate the gift of life you have been given.
No matter what hand you've been dealt...every moment, every memory, every experience and every connection, no matter how fleeting, is a gift.
I don't complain often because I do not care to burden my loved ones with a barrage of never-ending negativity because I know how helpless it feels to be on the other side of that. There is only so much we can do for our loved ones when they are suffering, and changing an impossible circumstance for them is beyond our power. I can't make someone's chronic pain disorder disappear, but maybe I can teach them how to use creative distractions to cope with it and remain more positive.
I am not happy all the time, trust me. In fact, I burst into tears at least once a day even if I have a lot of awesome things happening that I'm really excited about right now. I can go from happily rambling on and on about those wonderfully awesome things, to bursting into tears over the stressful bits.
For example, just last night I was trying to talk to my little sister on the phone about Off Beat. We must have played telephone tag a hundred times all day long, trying to get in touch with each other. For two moms who are staying home with kids all day, we've never felt busier.
When we were chatting, I was telling her how overwhelmed I felt with trying to balance my work and having the kids home all the time. We have been sheltering in place since March, being selective and careful about who we see.
This means I have had my children home with me for 140 days.
Since my youngest started kindergarten, I've spent my days writing and doing behind the scenes author scenes. While they're both at school, I have a solid 6 hour work day where I can submerge myself fully in my writing and check off every single box on my to-do list. I know I'm blessed to be able to do this. It has had an astonishing, positive effect on my personal growth, and I didn't realize how vital it was to my own mental health well-being.
But now, I am finding it very hard to give 100% of my attention to anything. I feel as if I'm being pulled in a thousand directions without any give in any way. As we were chatting, I was folding and putting away laundry. I moved my knee the wrong way, and my right hip slid half out of socket and I burst into the most horrific display of "ugly crying" ever. I'm talking huge gulps of air, snot and tears running down my face, hyperventilating simply because that really hurts.
It happens to me quite frequently, since my hip joint doesn't sit properly in its socket. It slid back into place, and I was fine. The tears stopped almost immediately after, as they generally do once I've had a good cry. It's why I encourage tears: they are a quick therapeutic release.
As a child with a rare chronic pain bone disorder, I didn't complain. Not as much as people expected.
I would do my best to try to explain how I was feeling inside my own body without the "woe-is-me" tone. You see, I come from a long line of doers, so it's not surprising that I keep my complaints about pain and life to a minimum.
I was taught at an early age that although my life may be a little harder because of my bone condition, having a chronic pain disability is a free pass to treat people poorly. I was never allowed to lash out because I was in pain, and if I did...I was put on a time out.
To this day, I still remember the recovery of my first surgery ever. It was brutal and terrifying.
I went in to have a few exostoses removed. One was on the left inner femur just below the knee, one was tucked between the fibula and tibia, and the last one was located on my ankle at the fibula. That surgery was not the smooth-sailing picture we were painted due to variables outside of everybody's control.
My surgical team at Sick Kids Hospital in Toronto was amazing, but looking back...I can see that the trauma was real and valid. I was, at that moment, a very angry little girl.
Those three exostoses would be removed and I was supposed to head home the same day. However during the surgery...I bled from the bone itself when they cut into me, and my leg swelled up two times it's regular size in the recovery room, they had to cut off my hot pink cast and send me back to the operating room.
I required another two emergency surgeries after. One was to get the bleeding under control, which they did by extending my scar from the top of my inner knee to my ankle and putting in a drain. Before I could go home, I had to have one more surgery to remove the drain and stitch me back up again, then I had to learn how to walk on crutches.
I don't know if it was because of the trauma from the surgery and nearly bleeding out, but getting up and moving after that surgery was one of the most painful and hardest things I've ever had to do. My normally sunny disposition was gone, and I was being incredibly snappy at the physiotherapist because she was forcing me to do things that hurt. Each time she made me put my foot on the floor, the blood to flow back to my toes and it hurt more than I could verbalize. I remember even in that moment feeling guilty, but she assured me she understood and took no offence to my lashing out.
Even when I was finally home from the hospital, I was in agony. My small body had just been put through more than it ever had before, and I was only seven. I didn't want to try walking, didn't want to deal with that icky feeling of the blood returning to my toes.
I started lashing out at my sisters, because I was angry that I was in pain while they were able to play and run amuck. I was mad that they hadn't had to have a terrifying surgery a week beforehand. I was devastated that my older sister told me I couldn't have the Christmas present she bought me until I at least attempted to walk. She was trying to encourage me, of course, and I wanted the present, but I didn't want to walk or get up, so I threw a temper tantrum.
My dad didn't like my attitude, so he picked me up and carried me up the stairs to the bedroom I shared with two of my sisters, He set me down on my bed and told me that it isn't my sisters' fault that I am in pain, and while they all sympathize and wish my reality wasn't one of chronic pain and surgeries...that it was important to remember not to take your pain and frustrations out on loved ones.
My sisters' hadn't asked to be born healthy any more than I'd asked to be born with a chronic pain bone disorder. Sometimes, it's just the hand we're dealt...but you cannot punish other people for that hand.
I have always had a supportive and loving network. I know I'm lucky. I've written about the influence certain members of my family have had on me before. I credit my family for raising me right, for teaching me how to put on other people's shoes...or at least walk in step with them. I know that not everybody is blessed to have the same kind of people in their life as me. I know that that's probably why they act out the way they do; because they haven't been shown the kind of kindness and grace I have.
This is why it is crucial to have a safe, supportive network when you have a rare disease or chronic pain disorder.
The community support I offer doesn't come by way of a fancy registry. It comes from that small-town connection, from your neighbour checking in to see if you need anything because she knows you're sick.
Along with a few other MHE warriors, I started a group chat on Instagram where women with MHE can come together and chat. They can share their experiences or ask questions, and talk to someone who's been there. To be a part of it, all you need to do is send me a message and say you're an MHE Warrior in need of support. There are many ways to do this: you can use the contact form on my website or personally message me on Instagram, Twitter, or Facebook.
One of those wonderful warriors recently was a guest on the Abnormal Adjustments podcast. Lauren explains MHE perfectly, and what it's like to live with it, in episode 8.
I spent a lot of my youth and young adulthood searching for representation of myself in books and on TV, and it's finally happening. We have a podcast now!
As for representation...that's coming from me, and what I'm creating. I'm currently working on Rare Rebel, a brand new full-length book in my Rebel series that tells the love story brewing between Tommy Armstrong and Sam Henderson. Sam is the first character with a rare disease I've ever created. She shares some of the same conditions as me: MHE, a platelet secretion deficiency, as well as cyclic vomiting syndrome.
Off Beat, my upcoming rockstar romance, also features a character with MHE: a little boy who also has a spontaneous case of MHE. Eventually, these two series are going to cross over in the best possible way.
While I'm excited to be tackling MHE in my new stories, there's always room for more rare characters in my book world.
If you'd like to see yourself in a book, please fill out this form and I'll make it happen.