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.

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.



Definition of hangry:
irritable or angry because of hunger.