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.

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.