A Time of Reflection

What a whirlwind the past few months have been. It has been nothing short of painful and exhausting. Not only for me, but for those closest to me. As I sit here writing I can feel my thoughts spiralling and it’s hard to figure out exactly what to say and how to say it.

Firstly, I wanted to begin with a thank you. A thank you hopefully big enough to encompass all the gratitude I have for those of you who have shown me so much acceptance, love, and support through out this time. It wasn’t easy to bare my darkest parts on the internet-but through the acceptance and freedom I have found in this process; you all have granted me the biggest gift I have ever received. I have never felt more profoundly seen and understood. This journey with Osteogenesis Imperfecta has been challenging at the best of times, and everyday I become more and more proud to acknowledge this part of me that often goes invisible, or purposefully unacknowledged. For so long I have been repressing this huge part of my life and the learning that has come from this chapter feels monumental.

What has come to the surface are these deep rooted scars in relation to feelings of shame and fear surrounding my inability to accept OI. The amount of energy I have exerted into repressing the severity of the disease, its impact on my life, and the importance of honouring it and my body’s health on a day to day basis. I believe this has manifested because of a lot of contributing factors, but through this specific event surrounding my lower jaw, it has become apparent that it has historically been easier for me to avoid the doctors and the conflict I knew would be inventible. I was so avoidant of the check ups due to general discomfort, and now I wonder how this current situation may have unfolded differently with more regular monitoring.

I don’t plan to hold any judgement on myself, but I definitely have learnt the importance of taking my health into my own hands, and the bravery it is going to take to continue to pace head on into the next chapters of my life with an OI body.

Thursday was the day. The bridge is in. I have a full set of teeth again. Under the recommendation of my doctor we’ve left the hardware sites open (they are usually sealed with UV resin to protect the secure screw in sites) in case of emergency. If I notice any swelling or feel the slightest amount of discomfort I need to make an appointment right away. For the most part these small hardware sites are unnoticable and only require a little extra attention when flossing and cleaning, and the fact that my doctor even agreed to send me home with my lower bridge is the win here. Hear that? That’s optimism.

I’ve eaten pizza, sushi, salad, and raw vegetables of every kind. But more then any food item could have ever given me-what I feel is calm. Normalcy. An overwhelming sense of peace and being awoken by this painful experience. The back and forth between the hospitals, the financial burden, the emotional turmoil on my fiancé, my family and my friends and co workers. It’s felt like what started as something so insignificant ended up being explosive-and even through the worst of it all, I’m glad I can sit here and recognize the learning and growth that came from this time. I think it would be a dishonour to myself and my pain to return to the version of me that existed before this learning. If it was all for something, then I’m glad it was for this. I feel as though I am deeply connected to myself and my OI and I feel ready to change the paces moving forward. I love myself, and I will continue to nurture this part me. Even when it’s scary.

So what’s next for Made of Something Stronger? I fully intend on maintaining this blog and I’m very excited to see where it goes next. I’m eager to unpack and write about the many ways OI manifests in my life. I think that through this new perspective I’ve become aware of the work that remains in my healing. Where I find myself today feels a little like I’ve finally reached the summit of a challenging mountain climb, only realizing now the journey back is as treacherous-and there are many more peaks in the distance. (how’s is that for a dramatic analogy?)

I’m home. I feel at home in this body that I’ve grown so fearful and resentful of for the first time. I feel motivated to learn about her, to continue to accept and love her. I feel like me. I feel happy to share this with all of you, and to write this chapters close with these words feels a lot like a happy ending.

Feeling Frozen

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.

Breakdown and Break Through

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.

hangry

adjective
hangrierhangriest

Definition of hangry:
irritable or angry because of hunger.

Georgina Marie Stokoe

My grandmother. My Mother’s Mother. 

Where to begin.

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.

The Dreaded Month of January

2021. Well at least that’s something.

Day 17 without teeth.

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?

A Not So Brief Introduction

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?