Well, the inevitable has finally come to fruition. For a long time I found such comfort in reading the experiences of others as a way of coping with life. I remember the first time I felt a sense of connection in reading about a shared experience on a subreddit community, or when those in my life were brave enough to share their personal blog posts. You know there’s a lot to be said for those “wow, you get it” moments that immediately deflate your feelings of isolation that event based trauma can bring you. Well, I’ve wanted to give back. Back to myself by honouring my experiences and speaking them loudly-and give back to the communities that have given me so much solidarity over the years.
So an introduction, huh? Where to begin. My name is Emily and I’m 29 years old. There are so many parts of me that exist outside of this, but I am someone who travels through life with an invisible disability. My family, specifically on my mother’s side, carries a genetic mutation disease, called Osteogenesis Imperfecta. This is more commonly referred to as Brittle Bone disease or OI for short. But you guessed it, I’m the girl who’s made of glass.
Now, as a disclaimer, I am no doctor. Far from. I do pride myself in the research I’ve done on my disease and have spent a great deal of time working with doctors and specialist advocating for my health. OI is not common by any means. I’ve read countless stories of small children breaking limbs and their parents being investigated by Children’s Aid for domestic violence because their child is the first to show the the genetic mutation on both sides, and without an X-ray or knowledge on the disease it’s hard to spot the more mild forms of OI on the surface.
What I know is that outside of my family, I’ve never met anyone who’s shared OI or known someone who’s family has been touched by it. Doctors constantly validate how rare it is, and its always felt like this weird “genetic un-luck-of-the-draw” thing that isolated me in many ways.
There are many types of OI. Some so severe a baby can fracture while still in utero, or live a life with much more challenging circumstances then my own. In the beginning of my journey to acceptance of OI, that was always such a road block for me. The self talk around “not having it as bad as others” or belittling my circumstances in comparison to what I was reading while seeking online communities of fellow OIers. On the spectrum of OI, I am lucky enough to have physical independence and I write this blog with full acknowledgement of my able bodied privilege.
Over the years I have seen a handful of therapists, and this was the one topic that ended up being a focal point in my ability to process my anxieties, depression, and specifically; issues surrounding self worth. To look my disease dead in the eye. To name it. To speak about shamelessly and without fear, truly presented it’s own set of challenges. Most of which are still very much present today.
So; to talk bit more about my experience with OI, I need to explain a bit about a symptom of OI. One amongst many is a symptom which has a direct impact on your teeth and facial structure.
Osteogenesis isn’t fixed by “drinking milk” or simply by having more calcium (the amount of times this has been the response to my disclosure of OI. ugh. ) It’s a mutation of the body’s bone protein essentially an excess of collegian in your bone structure. So naturally, anything in your body that shares bone proteins, like your teeth, nails, eyes, ears, skin etc are effected. The positive to having excess collagen? You guessed it. I’m very soft, and all the women in my life who carry OI look 12 years younger then they actually are.
Back to the teeth. OI teeth have their very own world of specialized needs. Dentinogenesis Imperfecta to be exact. Most commonly, the teeth, just like the bones, are extremely fragile and abnormal. This specific symptom has affected both my Mother and brother more so than any other side effect of the disease. For me, second only to breaking bones constantly as a child, my first memories of realizing I was different came when the kids at school began to constantly bully me for having “grey teeth” or whatever creative adjectives were being used that month.
I remember at a young age, teeth breaking and falling apart at the simplest of things. When I was very young my baby molars were deteriorating so fast they were covered in metal caps. You know, in the grand scheme of things, the teeth issues at this particular phase in my life were a walk in the park comparatively to the broken feet, legs, and arms. I never really got to participate in any physical activities that were deemed too risky in school, and looking back on my grade school years most of what remains are memories of isolation and feelings of being left behind.
Plot twist, the teeth trauma was only just beginning.
So lets fast forward. I’m 17. All the kids around me are deciding which universities to apply to. I’m a theatre kid in a provincially credited theatre school who loves to act. I was so thrilled to find a sense of community in theatre. I was writing creative literature, I began to be expressive with makeup and clothing, and I genuinely saw myself remaining in the arts for decades to come. It was one routine checkup at the Hospital for Sick Children that suddenly disrupted the certainty of my 17 year old assurance and grasp on life.
After decades of band-aiding the worst case scenario my (amazing, might I add) doctors and prosthodontists explain the remaining and final option as a young adult is full extraction of my crumbling teeth, followed by dental implants. A high risk gamble for someone who’s bone density looks like mine. A process in which was slowed down to allow for ample healing and monitoring along the way. It was three surgeries, a whole whack of nerve damaging complications, a sinus lift, a bone graft, over two years without teeth, and what felt like a limitless list of life altering details to my 17 year old self. I remember feeling like the timing was paralyzing. I had just fallen in love for the first time, and all of my closest friends were moving away to start their journeys as young adults in university.
It was rough. Not only for just me, but for my entire family. Yes there is PTSD. But I want to write about that specific journey another time. This is just the intro, remember?
Let’s fast forward. I’m 29. I haven’t fractured in 4 years. I’ve received biophosphate treatments for OI, and slowly but surely we see improvements in my bone density where it counts. My dental implants are still movie star quality, and lately the only time OI comes up, is in therapy, thinking about children in my future, or as a quirky “get to know me” piece of trivia.
And just like that, in pure 2020 fashion, what must go wrong-does, and will.
It started as a small crack. Something I left in the back of my mind as a non priority during a global pandemic. It took my father (yes, I am fully functional adult who lives with her fiancé) making the appointment for me-to actually get me in the door of my prosthodontist. Did I mention there was PTSD?
It had been nine years since I sat in that chair. Nine years since I walked into a room with my X-rays plastered on the walls revealing all that I tried so intentionally to erase from my mind. A face full of metal, nothing short of humanoid imagery. The comparison images that show the ever unavoidable deterioration of my lower jaw density. Ah, and as the theme of my life continues on-things are usually worse than they seem. A major infection, and 9 years worth of wear and tear-and here we are toothless again. Right before Christmas, right before a move out of the city, right when I was least expecting to be brought back down again.
At least it makes for good content right?