Have you ever looked around at the people who surround you and see an abundance of reasons to celebrate? So much positive momentum and good people deserving of good things, getting exactly just that? Sometimes I wish for something deeper then words to communicate celebration and support for all the amazing folks in my life doing great things.
Even during a global pandemic I’ve seen so much life happen to so many people I love. The birth of my godson, my sisters marriage to her best friend, friends starting businesses and pursuing dreams and passions. New pets, new houses, new cities, newness everywhere. It’s beautiful.
I know we all climb different mountains and follow different paths, but the demon of comparison is gnawing away at me. I feel myself so frozen in time. I feel as though I have no positive momentum or universal karma propelling me into happiness. I feel as though all the successes I’ve had in my life have taken me through treacherous battles, and for every small win there was- the battle scars that remain lay deeper then anyone knows.
I’m not really sure how else to explain it, but I feel like I’m in this box of people who begin to accept mediocrity as something to celebrate. Sort of like knowing that nothing ever great or exceptional happens to people like me, so when there is good or okay things going on, it feels notable to celebrate. Could I have done more or pushed myself further to have prevented myself from being so squished inside this box? What could I have done differently?
I’m having a lot of trouble accepting my life as it is these days. I feel confident in myself as a person, and I know I have value in what I offer to the world-but how would that look, if I was me, without the turmoil. Without the mental health challenges, without the genetic disease. Would I still be the same me? Why do these things make me feel any less capable or deserving of success? Why have I become so accepting of expecting so little from my life?
It could my 30s approaching, and the stillness of lockdown. But I feel this overwhelming sense of time standing still, frozen in dread. Just like all the complications with my jaw and these dental implants. No concrete plan of action, still so much uncertainty and bad news around every corner.
Today (exactly 2 months to the date) we finally had our consult follow up with the surgeon after all my scans. He’s ruled out surgery for time being. Definite relief, but hearing him explain how little bone mass there is to work with, and how my implants are “only just hanging on” I was reminded yet again, how nothing feels easy for me.
I wasn’t hoping for surgery, but I was hopeful for a sense of confidence in a direct plan of action, and I got nothing of the sort. More questions, more things to discuss, more appointments to make. This is exhausting. Still no teeth.
Today we discussed alternatives types of prosthetics that may be easier to manage and monitor-and I found myself devastated coming to terms with the fact that I may have removable teeth before I turn 30.
You don’t picture your life this way when you’re 15 day dreaming with your girlfriends. You don’t imagine that your genetic disease will manifest in a strange and uncommon way that makes it hard to eat, speak, or remain confident in the world. Not only that, but going through all those big surgeries when I was 18 believing it would all be worth it for decades to come…innocence truly is blissful.
In the end, I’ll sit here and continue to look to the universe for an answer to the “Why Me?” million dollar question and likely never get one.
So here’s to accepting stillness. To comparison being the thief of joy, and to celebrating the little things-because sometimes that’s all we have.
I’m having a rough day. I could feel irritability on the horizon for the past couple of days. Sometimes you feel it’s slow rise within similar to the need to pass an uncomfortable burp, or like a lingering headache that won’t get better-or worse. Just this dull annoyance floating behind your right eye.
I’m wanting to be alone more often, I don’t feel like expressing my feelings. Even my favourite video game was frustrating me for no real reason at all. Today on the way to the new clinic in North York, I got lost. Luckily we left early enough, but I simply entered East instead of West on google maps and unleashed tears and attitude when I realized my critical mistake. Everyone’s been wonderful, and there has been no lapse in support whatsoever. I’m just irritable.
If you’re easily annoyed by whining I’d skip this next bit-but I need to get this off my chest.
I am so overwhelmed and frustrated with food. I’m frustrated that the things I want to eat make me feel very uncomfortable, and I’m frustrated that the things I can eat comfortably are feeling extremly unsatisfactory. I would do unexplainable things for a crunchy and fresh salad. I’d happily eat stalks of raw celery instead of mushy overcooked foods.
I feel like I’m getting zero nutrients. In the mornings I usually opt for a smoothie because it’s easy to add greens in there with a choice of protein powder and fruit. That isn’t a problem because I’m not even really a breakfast person normally. All the food I eat throughout the day feels like empty food. When I push to eat something a little more difficult I usually end up spending the next day really uncomfortable. All of the vegetables I eat are sooooo over cooked. We made beans the other night, which I made sure not to cook to a mushy paste, and I had a strangely hard time swallowing. They felt dry? I guess without the ability to break them down properly that sort of makes sense. I don’t know. I ended up mushing them into a paste with a spoon.
I’m fed up. I hate that even the simplest of foods are a challenge to me. I’m losing my creativity and feeding myself feels like this epic mountain climb, not even worth the trek. I’m not able to enjoy my guilty pleasure foods which allow for a pep up in spirit here and there. These days it’s jello, or the occasional scoop of ice cream.
Thinking about dinner tonight turned my irritability bubble to an ugly angry cry. Finally. I could feel this cry brewing within me for a few days, and when I stubbornly opted to eat nothing for dinner, my own hanger pushed me over the edge and I let out a big cry. It was cleansing, and I didn’t lose control of it. It actually felt really good.
Shortly after I was able to calmly make myself a little serving of soup which I added spinach too, and the vivid green floating around in the bowl made me feel a little better. It was a real and raw day, and as I lay here reflecting on how it unfolded, I know these days are bound to come around. I forgive myself for loosing my cool today. For the most part, I’ve been proud of my ability to remain level headed. I’m human, and its natural to loose control when the pressure is rising. Yet, now that it’s over I’m glad I didn’t suppress it and I feel a sense of calm. Sometimes all it takes is getting lost in an unfamiliar neighbourhood or the pure unadulterated reins of hanger.
It is a loose estimate, but that is the most updated number representative of the amount of people affected with OI in North America. 50,000 out of 366,600,964.
Over the past few posts we’ve veered away from my more immediate situation, mostly because it’s been a terrible phase of limbo with not much to report. My infection, which I’ve since learnt has a name; Peri-Implantitis *google at your own risk-super gross* isn’t any better. I brought myself to a walk in clinic as a last resort in between appointments because I knew something wasn’t right. My sinuses started aching, my glands all down my neck were starting to swell, and every time I moved my mouth my ears would hurt.
Pretty funny experience with the walk in Doctor. He did his best. He did the “Mhmm, Mhmm, Ah, Yes, Mhmm” when I tried to quickly explain why I was there asking for antibiotics. He kept asking me “what tooth was infected?” and after repeatedly reminding him there were no teeth-he insisted he take a look “for curiosity’s sake”. Very timidly he said, “Ah yes, that looks very infected and tender” and I shortly left with a prescription for Amoxicillin.
I’ve been on this round of antibiotics for 6 days, 3 times daily, and there truly isn’t any improvement. Oh, and while we’re counting-this is day 29 without teeth. *said with irritability*
It’s frustrating to feel like I’m doing everything I can to possibly speed up the process, and yet see zero improvement. Waiting for CT results, waiting for the surgeon to call me so we can put a plan together. So much waiting. I feel like time is standing still, and I am just so anxious and eager to know what’s ahead.
Sometimes when I’m panicking my fiancé reminds me that I have a tendency to hyper focus on the probable worst case scenario. It is valued feedback, and he’s right. I’m definitely trying to manifest more positively. However, he knows, and I know, that when you’ve been faced with worst case scenarios frequently in your life, you sorta just begin to expect them around every corner. So, that’s where I’m at right now. Positively trying to manifest good news, while also preparing for the worst? That sounds like an oxymoron.
I can’t stop thinking about what within me has changed, and how I got to this place of responsibly utilizing some of my coping skills right in the moment of action. Is this Emily unintentionally prioritizing mental health practises? Oh how I believed this day would never come. I cannot believe how good it has felt to share this so authentically. The response to the this blog is the fuel I didn’t know I needed to nurse the flame of healing within myself. OI has been largely suppressed within me. Fear maybe? Lack of self worth? Ignorance providing bliss? All of the above? Probably.
I remember this summer during a socially distanced hangout with my closest friends, we (naturally) got into one of our very not-so-casual conversations about life and deep personal reflection. They both identify as true perfectionists through and through, and I remember feeling so baffled by the fact that I did not feel this within myself in the slightest. It was that moment with two of my safest people; did I verbalize a thought I had always been too fearful to let outside of the safety of my mind.
For me, there’s always been this grim timer running in the back of my mind on how much liveable life remains for me. It’s quite dark, but it’s the truth. I’ve felt this immense sense of urgency to live as much life as possible in the healthy years that remain for me. I’ve saved pennies to backpack through Europe, and driven across the United States with a punk band on tour. I left an unfulfilling and toxic work environment to go back to school at 27 to pursue my true creative love-makeup artistry. All of these seemingly impulsive, or irresponsible decisions to some, have been fundamental in prioritizing my mental health and living with a silent disability.
I want to ensure that no matter where I am in life, I can always rely on the fact that I did what felt right, and listened to my soul speak. Who’s to say that my timer will in fact run out before most? There truly is no gaurentee. What matters is that I know I can say confidently that I’ve loved deeply, forgiven quickly, and learnt from some huge mistakes made along the way. I have travelled outside of my comfort zone only to find growth and beauty there. I’ve seen parts of the world that have imprinted on me like no other. I’ve lived authentically, and shown kindness back to a world that at times, has been cruel to me. For these reasons, I thank OI. I’m not sure if I would have pushed so hard to prioritize my happiness, had I never feared a inevitabile deadline of losing it all.
Georgina is the mother of three daughters. My mother being the eldest. Georgina has OI and was diagnosed with type II/III many years ago. I could only imagine what it was like being faced with a diagnosis of OI in the 50s or 60s because of how little they know about our disease even in the current day. Even with the medical advancements of today, Georgina is often left with major gaps in her health care.
My mother was the only recipient of OI out of Georgina’s three children, her type being quite mild, my Mom has had personal struggles with the disease as well. However, I’m sure that she would argue that her current biggest ailment with Osteogenesis Imperfecta is being the sole care provider for Georgina.
Georgina’s OI has become quite advanced in her senior years. Granted she is only 73, she is completely bedridden. She has been in full-time care for many years. There is a lot to unpack here, but to summarize; Georgina’s OI took a real turn for the worse when her vertebrae started to collapse. She has been wheelchair-bound for quite some time, but she was able to grasp her last years of independence tightly. Unfortunately, as mentioned when her vertebrae began to collapse, her organs began to squish inside her fragile 4’9 body, and thus a plethora of medical complications. She has fractured opening jars of jam, developed loss of hearing and eyesight, rebroken bones that never healed properly, and has had countless metal support beams placed to assist the healing of major fractures. We’ve seen her OI manifest in so many other ways, and shamefully I can admit that I’ve refrained from asking investigative questions, or done the research due to fear. Her list is just so painfully long. Due to the protection of her privacy, I won’t go into detail; but I assure you living with these conditions has taken just as much of a drastic toll on her mental health as well. No surprise there.
Georgina recently lost her ability to move her hands. The one-piece of independence she had left. More recently she was hospitalized for a heart attack. Her body is in so much pain from fractures among other things, and the damage being done to her internal organs, that her body is working overtime to try and process this destruction. Her heart is giving out. Imagine living with that amount of pain all the time? I can not.
We’ve come close to losing her many times. At this point, I’m not sure anymore if she feels like living is something worth celebrating. Observing her, talking to her, connecting with her, has become more and more difficult for me over the years. Shamefully, I will admit.
Georgina like all of us hasn’t been a perfect person, but as I have come to only understand a microbe of the pain and suffering she has lived through, I start to slowly see why she may have lost the ability to remain level headed and joyful at the best of times.
As a child, I could observe my Grammie in a wheelchair or her struggles physically, but it wasn’t until my teenage years when I began to grasp my own OI, and as her condition worsened, that I began to understand what had always been right in front of me.
Georgina’s OI is more severe than mine, but only just. As I have gotten older this has become such a barrier in my ability to connect with her. Strictly rooted in my direct fear of seeing my future in her present. There is no guarantee that this will be, and I’m confident in the advances medicine makes every day. However, I think fear is a rational human response to feel while observing your extremely ill grandmother, worsening every day, whose complications are directly related to the same genetic disorder you both share.
I mean not to minimize Georgina’s experience. This very challenging path of life she is on is so separate from my own experience and I want to acknowledge her incredible strength and resilience.
Watching her health deteriorate at the speed which it has these past few years has been crippling at the best of times. Crippling, because I love her and know that her everyday struggle with pain is unfathomable to most of us, and crippling because no amount of reassurance can guarantee that my future will not resemble hers.
I do a good job setting that aside these days. Through my adult years and the amount of time I’ve spent researching Osteogenesis Imperfecta, the more I’ve come to learn that Georgina’s experience is a rare and misunderstood one. Now at this phase in her life, I only try to leave her with kindness.
I can’t write a Blog post about Georgina without writing about my Mother. If you’ve done any research on disability or any sort of support work training, you know that the role of sole caretaker comes with just as many challenges. It has a completely different spectrum of frustrations, pain, and isolation. My mother is incredible. The advocacy work she has unintentionally become a master at, the patience and the sacrifice she has had to shoulder for Georgina is truly indescribable. She’s been a flawless mother to my siblings and me, a devoted wife to my Father, all while working full time and pursuing her career. At any given moment she has had to respond to a Georgina-related crisis (and there have been many of those) and I do not acknowledge enough, the way this has shaped her life for the past 10+ years.
Mom, you are nothing short of admirable. I know that Georgina’s experience with OI has likely overshadowed your own, and I just want you to know that you are valued beyond belief, and truly seen with immeasurable strength. You inspire me daily. Watching your bravery in the face of Osteogenesis Imperfecta is a major reason why I have dove headfirst into advocating for myself and being unafraid to face what is to come. You constantly remind me of the strength we’ve developed facing these challenges time after time, and I seriously wouldn’t be the woman I am today without you by my side.
A bit of an uptick from my previous post, but I truly am floored. This blog has existed in different capacities for years. Many moons ago I was writing regularly on a Tumblr page that was never shared. For years journaling has been a much-loved tool of mine, so I always knew this day would come. It took a while to mull over the rough cuts with friends-but the isolation of 2020 ended up being the final motivator. The response from sharing this Blog has been nothing short of a dream come true.
It’s not easy airing out your personal dirty laundry. I dreaded the idea that people would view me as a Negative Nancy or big baby whining about personal woes during a global pandemic. As much as this Blog intends to reach a community of OIers-I love the feedback I have been receiving about the themes being discussed here feeling truly universal. Any dread or doubt I was having about this being misunderstood-has been completely eradicated.
Thank you a thousand times over to those of you who have reached out, shared your feedback, and sent over genuine warm words. I have never felt more well-received and proud of the work I’ve been doing here. Talks with OIers from all over North America, old friends, new friends, and family. You have all just continued to assure me that this is right. To utilize this very specific life experience as a tool of sharing and connecting.
This warm and fuzzy assurance has torn deep down into my icy cold heart, and amongst the tidal wave of life right now I am thankful for the opportunity to feel motivated and committed to something. It’s so healing to feel the dread of shame lift away, and know that owning this disease, and my life experience with it is nothing to be ashamed of.
In lighter news, we completed our move as mentioned in the previous post. As I suspected, it’s been exactly what I needed. A positive thing to stay focused on and a glimmer of silver on my big grey cloud.
I’ve still got a seemingly worse infection around my lower right implant. I’ve followed my directions eminently in hopes of guaranteeing the return of my beloved prosthetic teeth. I’m starting to feel really nervous that this will not be as quick of a fix that I was promised.
In more looming news; I’m going back to work. Honestly, if I had it my way I would not be. The reality is that for financial reasons I have to. Everyone says it will be good for my mental health to get back to routine and normalcy-but this step is bringing forth so many anxieties. Most of which feel like PTSD triggers, but in the spirit of honouring my experiences and reality-I think it’s okay to be scared. It’s a cruel world, especially to those of us that are different.
Will I get light headed at work because I won’t be comfortable eating there? Will my jaw hurt after talking too much to the customers? If I’m too non conversational will they think I’m rude? Will they know why I sound funny? Do my coworkers believe me? Have they googled OI to prove the validity of my story?
( a small glimpse into my anxious thoughts)
My logical brain knows most of these anxieties are hyper focused on my personal insecurities specifically rooted in appearance and wanting to “be like” everyone else. I wish that was enough to talk me down me, though. In the heat of the moment everything is amplified and the only place I’m comfortable is at home with my cats.
Can’t I just resurface when things are easy again?
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.