One Whole Year

Not even sure where the time has gone, but it most definitely feels like an entire years’ worth of life has happened. This blog has been the rose at every “rose and thorn” question I was asked this year. Both on my 30th birthday and welcoming 2022. Even though I stepped away, I spend time planning and thinking about what to share and knowing full well this will be on going relationship even when it is inconsistent.

My first inclination is to share all the hardships from this past year and reflect on the (many) speed bumps. Granted you can read about most of them here, I’m hesitant. That feels too heavy to carry right now. Today-and hopefully continually into 2022, I want to allow myself as much freedom and weightlessness as possible. What I mean to say, is that for most of 2021 I was faced with the harsh realities of things I could no longer avoid or displace from my every day thinking. It was messy and beautiful but it was also necessary and empowering. I turned 30 after sitting face to face with the darkest parts of my fear and began to acknowledge how these fears can manifest depression and other anxieties. I felt like for the first time, I really understood me. With this shift in thinking I immediately noticed an alleviation of negative self-talk. Trust me when I tell you, no one has said harsher things to me, about me, then I have.

I think personal forgiveness is an ongoing journey, but in general there is a self-directed softness and understanding that feels more present than ever before within me. I’m not one for resolutions, but this year all I hope for is a deeper and strengthened connection to my trust in self, and a prioritized relationship with my intuition. I have the tools to do exactly what is right for me, and for so long I doubted that.  Minimized my assurance in things because of thinking and criticisms for being “too emotional” or “too sensitive”. I spend a lot of time with my inner dialogue, and I just want us to be nicer to each other. We have a lot of love and kindness to spread to others, and I want to give myself the same acceptance and freedom to just be authentically me. 

 

Life is too valuable and unpredictable to waste away over the what if’s or what could have been’s. My life looks nothing like how I thought it would, and I wish I could get back the hours of my life I spent hoping for something that just could never be. Wondering how things would have looked if I were dealt a different hand of cards, or replaying pivotal times in my life obsessing over how I got to where I am now, knowing sure well the decisions I would have made differently if given the opportunity to do so. These are the things that are heavy. These are things that I do not want to carry into the new year.

 

So for now, we will roll with the punches, take each day as they come, and put gratitude and kindness at the forefront. I have such an amazing team of souls surrounding me, you all make me feel so invincible and loved. Truthfully the commitment to myself, the freedom to live authentically is all because you’ve reminded that I am worthy. That even when it feels as though all hope is lost-there is and always be something worth fighting for and worth believing in. A dawn after the darkness.

Things Worth Sharing

Hello world,

It’s been a while, hasn’t it? There has been so much going on lately and yet somehow when ever I write these posts they linger as drafts for far too long. I’m not sure where this new found stage fright has come from-but today feels like the right time to share some things.

Firstly, Georgina passed away. Let’s just get this out of the way. If you haven’t had a chance to read my blog post dedicated to her specifically, I would encourage you to do so before reading any further.

She died in June at 74 years young. Her passing has been a strange loss to grieve. Everyone is relieved to know she no longer suffers, but in that same breath the amount of acceptance around acknowledging the vast amount of suffering she carried day in and out for years, is a tough pill to swallow. My family travelled to Vancouver and brought her remains to the creek where she played as a young child. In her final years she spoke fondly of her childhood memories playing amongst the trees and swimming in the running water. Her celebration of life was beautiful. I’ve never been to a funeral or anything of the sort where I felt so happy to be where I was, experiencing what I was experiencing.

Not only did I have a sense of joy knowing Grammie would have been smiling ear to ear seeing us all in her favourite place; but all of us standing together in her honour united as a family after far too long.

It had been 11 years since I was in BC. Over 5 since I had connected with my family there. Being together, sharing stories, looking at all the photographs. My heart was so full.

On the day, guests from her family whom I’d never met as adult came to pay their respects as we celebrated safely and outdoors, only a few feet away from the property where Georgina grew up. On this day, I met family members who also have Osteogenisis Imperfecta. I couldn’t believe it. I guess I always knew they were out there in the world, but next to Grammie I’ve never been able to connect with anyone in my family who also has OI. I was floored. All though brief, it was a monumental experience for me. Full grown adults, living able bodied, with OI just like me! Wow.

We made jokes about dental implants, and Grammie’s 82 years old sister showed us how strong she was by doing some fast and impressive karate moves. It was adorable, and as I laughed my heart ached. Not everyone with OI has story that looks the way Georgina’s did. That was the biggest gift I could have ever asked for.

Tomorrow I have a bone density scan. A routine scan to monitor the status of my density since receiving my first bio phosphate treatment in 2017. I feel nervous, but prepared for all the possible outcomes. I guess the “worst” case scenario would be that it’s time for another dose. It’s a pretty awful experience that makes me quite unwell while my body absorbs the high potency drug-however it’s a treatment that works! There are just some pretty serious side effects that will effect my life differently then how they did when I was 26.

After each treatment there is 4-5 year window where pregnancy is not encouraged in women. How the drug effects the fetus, how the weight on your pelvic bones from pregnancy could be detrimental in the absorption phase. There’s a lot of huge consequences.

At the time motherhood and children felt light years away-but now approaching 30, another 4-5 years wait feels a little more heavy. I flip back and forth so often about wether or not it’s “a good idea” to have biological children of my own. I’m terrified of the suffering I could pass on, yet I know that with OI I have found so much additional purpose and beauty in my life, and I’m glad to be who I am. OI included.

The call of motherhood has been a treacherous journey with loads of bumps along the way and A LOT of therapy needed. I had suppressed it for so long because of my own experience as a young girl with OI, and being witness to an extreme case through the lens of a suffering family member.

For now, we’ll take it day by day. I’ll be sure to report back when I can. All I know is that everyday I feel less and less afraid of my disability. I feel so in touch with who I am, the OI part of me, and all the parts in between. That’s all I could have ever asked for leaving my 20s behind. I’m proud to be this version of me and that’s enough.

Hello From the Other Side

Well, as the title states, this is a hello from the other side. I’ve wanted to write a check in of sorts for a while, but the reality is that I’ve felt unwillingness to do so without “good news” to share. There is a lot that has been better-and that is definitely something. I mean-I have my teeth in still, so thats great. In terms of the teeth and the jaw things have been sailing smoothly since my last appointment.

It is a strange time to be faced with adversity, while the whole population is currently still sorting through a crisis on a global scale. I knew so much of my heighten anxiety and depression was very much connected to my OI related triggers, but I had myself convinced that once everything was repaired-I’d find myself in this cushion of safety and happiness. What I forgot while I was in my depression hole, was that outside of all of that mess-was a even bigger mess I wasn’t really connecting with.

This month of April has been so wishy washy. I’ve retuned to work, and the simplicity of that has been so enjoyable for me. I throughly enjoy my barista job, and there are so many lovely people that it has connected me to. Everyday I walk to work, and since I’ve started walking I’ve felt my physical stamina return. It feels like a nice way to prioritize time for my body and mind, before and after a shift. The other side of this month has held a lot of Covid fatigue. I almost could say that my headspace from all the OI complications, sailed me off to a completely different island of mental health issues where I feel as though I vacationed away from Covid. I was isolating, for completely different reasons, and my fear of the world made it easy to stay inside and remain disconnected.

I’m ready to get back on my feet and grow. I feel so eager to be the version of myself I love and am proud of. Yet, here we are, still so stuck. I was reading online recently that the feeling which we all have felt throughout this time is languish-and wow. Is that not just the perfect verb for all of this.

Some days feel strange because they feel like a repeated version of the same day, and I have an overwhelming sense of deja vu. Other times, there is a comical sense of cabin fever where things are extra funny and silly, and the sensation of my mind turning to mush ends up providing some real laughs to Alex and I. Or, on a day like today specifically- it feels like a black hole swallowed 24 hours right up in front of me. I feel unmotivated, and so aware of the underlining anxiousness keeping my brain at an outrageously high frequency.

I was about to start working for MAC Cosmetics before the second wave. I was going to get married in August. The personal loss has been endless. The loss of days, the loss of years. It continues on.

All of my closest friends (myself included) turn 30 this year. When you’re in your mid 20s, and you start to fantasize about the way your life is going to look by the time you roll up to your 30th birthday-there are always a few imagined scenarios. You give yourself a few options, and trust that where ever you end up will be acceptable, because you’ll be 30! I remember waiting so patiently for this day to come.

Until there is a global pandemic. Until two years of your life has essentially been put on pause. What a reminder this time has been that we truly never know what is around the corner. Nothing is ever guaranteed or promised to us. Everyday is a gift, and the beauty in life is actually found in the seconds and moments that exist only here in the present.

I still feel a deep level of connectedness to myself and my inner dialogue. I hear her so clearly now and I’m noticing the ways in which this effects my confidence positively. I’ve said it a million times over, but there is so much freedom in authenticity. Even in owning the pain, the languish, and in the ugly nasty parts that aren’t as easy to reveal to one and other.

So, without really having anything concrete to share, if you stumble upon this I hope you’ve found it assuring to know that this stillness and pain is universal. Outside of my disability and personal adversities, there is a bigger issue at hand that connects us through experience. We may all be personally effected differently , but its universal in theme.

In the words of Dory, “Just keep swimming.”

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.

A Slowly Closing Chapter

Well folks, it seems as though my new prosthetic may in fact be right around the corner. Let me bring you all up to speed.

After our consultation with the surgeon, we finally got back in touch with the prosthetic dentist. That took way more time and confrontation then I would have hoped for-but in the spirit of staying focused on what’s ahead, I’ll leave the details out.

We’re moving forward. We’re going to use the implants while we still have them and cross the looming bridge of failing implants when we come to it. We’re anticipating about 5-7 more years of use out of these ones, and at this point that feels like a great compromise.

The appointment was scheduled for the 4th, and in preparation for the installation of my brand new prosthetic, Alex and I went and bought all the crunchy and chewy foods I had been longing for. Bagels, 6 heads of romaine lettuce, carrots, tortilla chips, veggies galore. I had this pep in my step knowing I’d soon be put back together again.

Jokes on me. All day leading up the appointment I had this feeling in the pit of my stomach. I knew something was going to go wrong-but I was staying positive and day dreaming about the Caesar salad I was going to eat for dinner.

I’m sitting in the chair with my jaw held open by something that looks like a medieval torture device. I’m singing Joni Mitchell in my head to try and drown out the noises of the tools that scare me so much. I know something is wrong. My Doctor is more forceful that usual, and I keep hearing him say “let’s try one more time”. It’s been two hours. I’ve been given one break to rest my jaw, but my entire face is now going numb. I want to stop.

What I gather is a mechanical issue that occurred in the lab, my new prosthetic was built incorrectly and after two of the longest hours of my life, we agree it needs to be rebuilt and sent back to the lab. The appointment is already made for next Thursday, which hopefully will be the real deal and things will go accordingly. As the title of this blog states, we may finally be here. The slowest, most drawn out closing of a chapter, ever.

Joining Alex in the waiting room, I knew that he already knew something went wrong. I remember thinking to myself around the one and half hour mark that he probably knew something was up. I’m so lucky to have him. Seeing his face immediately calmed me. We make a good team, and he makes me feel so brave. Walking out to him after that long terrible appointment I was over come with such guilt. That after all that waiting I wouldn’t have any good news to share. Especially since I knew he was expecting to hear it.

So, that’s all really. Mentally, I feel hopeful that next week will go smoothly. What’s one more week of waiting in the grand scheme of things?

A Message From The Universe

This is long. Forewarning.

I guess before I launch right into this, it’s important for me to clarify that I know that the art of Tarot and Tarot reading means a lot of different things to many people. My relationship with Tarot started when a deck was passed onto to me by a very important woman in my life. A role in which she played many different positions. She ended up becoming what I like to call a spiritual advisor. A Reiki practitioner, a spirit guide, healer, matriarch powerhouse, and over all genuinely kind soul. She introduced me to the importance of recognizing your relationship with your chakras, and I began to throughly enjoy Reiki and relied on it as a way to stay in communication with my body and receive it’s messages in a deeper way.

Over the years she guided me to begin my own relationship with Tarot, and supplied me with research, readings, and my very own beginner deck. I was hooked immediately. The artistic beauty with every deck and the way the messages can be found in the imagery. The way you are given profound messages when you’re ready to receive them. Some of my most monumental and difficult personal learnings have come from card pulls. Sometimes it is simply just information repeated back to you in a clear and direct way, sometimes it adds more complexity to a decision that felt clear, or it can spark dialogue about feelings that haven’t surfaced entirely yet. The list is truly endless, but these are just some of the ways Tarot has guided me.

It had been a very long time since I had given myself a reading. I’m not entirely sure why I was avoidant of my deck, but it had been over a year since I meditated on the idea and allowed myself to create a safe space to do so. That being said since we settled into the new place, and I have been faced with these particularly dark times- I could hear them calling me.

I know this may be a strange phenomenon, but anyone who has had nurtured a positive relationship with Tarot knows exactly what I’m describing. It catches you off guard sometimes, but all of a sudden you hear them call you-and that is how you know its time for a reading. The more avoidant you are of that message, the louder it gets.

So-if you’ve been following my most recent posts, its no secret that I’m having a difficult time. I’m comfortable with addressing my depression and I have a strong support system set in place. For the most part the severity fluctuates, but I feel in control of things and I know that I am safe. However, I’m in that phase of depression where one single bad isolated event spills over into every avenue of life-making everything else feel so bleached by the depression I’m carrying. It’s hard to focus on anything at all, I feel unmotivated, and I’m having trouble being able to exercise happiness at all. If its not numbness I’m feeling, then I’m comparing myself to everyone and everything, and acknowledging only what I see as genuine failure and unworthiness.

So it’s Thursday. Not much out of the ordinary, but I can’t sleep and I’m up all night thinking about how unhappy I am with my life. How out of control I feel in my circumstance and the next thing I know-it’s 7am and I haven’t slept. Friday is spent in a pretty dark frame of mind. I can’t stop obsessively thinking about how differently I wished things looked for me. I truly feel like I’ve got a lot to offer the world, and in this stage of life I feel so confined. No opportunity to connect, grow, or create and fulfill dreams that I envision for myself. I’m about to be 30 and I feel like there are so few things I have achieved. I look around and see very little to be proud of. It’s dark. I know.

I’m sitting on my bed with Fynn, my cat. I’m trying to play a video game but my internal dialogue is so loud I can’t concentrate at all. In that moment the message was loud and clear. “Do the reading.” Get the cards down, close the door, and speak to your spirit guides.

It was almost immediately, but as soon as I held the deck in my hands, I closed my eyes and asked for help. Clarity, validation, guidance, I’m not really sure who I was speaking too, but what I received was a very loud and clear message of things I was in desperate need of hearing.

I did the 7 card spread. It’s commonly used to help one understand a current conflict or situation by explaining your past influences on the situation, and what is to come. I wouldn’t normally share so much detail about a personal reading but this one is too specifically perfect, too strong of a message, not to include in this safe space of healing and sharing I’ve created for myself.

  1. Primary Issue: The Fool Reversed (Major Arcana)
    -fear of the unknown
    -hesitant due to feelings of unpreparedness
    -exploring the “fool spirit” in more personal and quiet toned down ways
    -how can you enjoy more play time in your life?
    -an over all general feeling that the timing isn’t right
    -lack of connection, feelings of distance, “keeping things light”
  2. Distant Past Influences: Ace of Pentacles (Minor Arcana)
    -the sense of desire to plan for the future-make time to recognize where you have come from, the hard work that got you to where you are
    -dark times cloud current achievements
  3. Recent Past Influences: Queen of Swords (Minor Arcana)
    -gained sense of maturity
    -gained sense of perceptiveness
    -the ability to look at things from an unbiased judgment based in intellectual reflections (as opposed to emotional)
    -a desire to seek the truth
  4. The Present: The Sun (Major Arcana)
    (This is where I immediately felt the weight of this reading sink in)

    -feelings of being extremely vulnerable, which leads to feelings of purity [pain associated with growth/”sucking the poison out”]
    -appreciation of emotional achievements
    -validation that others look to you for guidance and inspiration
    -a stronger sense of a developed inner voice
    -a rediscovered sense of meaning
    -transformation
    -the highest version of yourself
    -make space to relish in your accomplishments
  5. Immediate Future: Ace of Swords (Minor Arcana)
    -the card of new beginnings
    -prepare to put a plan into action
    -see this as a sign to start planning
    -a card for encouragement
    -a sense of energy building, but not yet time for action
  6. Factors that will affect the outcome: Two of Pentacles (Minor Arcana)
    -be wary of over commitment
    -this card speaks the importance of time management and organizational development
    -reassess where your personal investments lay
    -importance of reassessing your priorities after leaving a dark time, rebirth
    -“one thing at a time”
  7. The Outcome/ Solution: The Sun (Major Arcana)
    -“A one way ticket to a safe space”
    -the dawning of a new day
    -card radiates with positivity and optimism
    -connectedness to true self and inner spirit
    -the ending of a dark time is near
    -it is time to see the future on the horizon

After I did this reading, I had the most cleansing cry. It was a very visceral physical response. I was overwhelmed by a feeling of connectedness to my current experience, it felt like the universe was sending me validation. Sort of like the pain, the stillness, everything I’ve been so challenged by is being heard and seen; and yet also I was reminded that this is only temporary.

That The Sun card appeared and reminded me that its always darkest before the dawn, and through this all, I will resurface as a deeper more connected version of myself. It was also a very clear reminder that, I have over come so much in my 29 years and whether or not I can see those achievements clearly in this current time, they are there. Just hiding under the dust of depression.

I have found so much genuine personal growth in speaking about OI on this platform, and through this tool (and with professional support as well) I have never felt more in touch with these parts of me, however dark. It’s like I’m seeing who I truly am, in the most authentic way and learning all about her. However painful or uncomfortable it is at times, I’m glad I’ve put in this work. I trust that things will get better, and I’m so looking forward to seeing this version of myself in happier times too.

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.

Invisible Disease

I’ve been experiencing what would be defined as “writer’s block”. It’s been hard to find the words, and the motivation during this very bleak and slow time. I’ve got another appointment with the surgeon on the 16th, but there has been so much stillness. I’m sure it’s likely amplified for me as I wait, wait and wait some more-but I’ve been here stuck in this difficult time left here to process this open wound. For now I am going to continue to wait and heal. Slowly and surely. 

I’ve been talking with a lot of my close friends about the adversities that come along with having an invisible disease. These past few months I’ve had to advocate for myself in ways I have not yet experienced ever before. Whether it is meeting a new doctor for the first time who isn’t familiar with my condition or my history with OI. Or physically feeling the gaps within our healthcare system. I have utmost respect for front line healthcare providers and I could only imagine the fear they have internalized working during this time. This isn’t going to be a monologue bashing doctors and healthcare providers. I do, however, feel like I’ve fallen through the cracks now that my circumstance is no longer an “emergency”. I want my life back. I want to feel whole again.

 I feel like I’m operating life at 25% capacity. Heightened sensitivities, heightened anxieties, amplified insecurities, feeling like I inconvenience everyone around me. All because of this invisible disease.      

I’ve longed for nomalicy, and been able to push through my desire for isolation. I’ve been connecting with my friends more often, picking up shifts and will be joining the team a bit more regularly at the cafe, all in an attempt to be more accepting of my current situation. The physical pain and discomfort is so much more manageable now, which makes bringing back every day routine easier-yet I still feel like I’m walking through life with a giant third eyeball. Returning to work, answering the questions of coworkers and regular customers about where I’ve been and why I’m back is the exact reason why I feel challenged by ableism and my personal experience with an invisible and extremely uncommon disease. 

I have felt challenged, questioned, and criticized by folks in every avenue of my life investigating where I’ve been and what I’ve been going through. Whether the intention is ill or not, there is a definite tone that comes across when it’s quite clear that someone doesn’t believe you are suffering. It may not be a physically obvious injury, but I assure that you would rather not be in my shoes.

The unknown is uncomfortable for people, and there is and always will be a prejudice against differently abled bodies, and preconceived ideals around what it means to “be sick” or “different” especially when your disease is undetectable to the human eye. This has only been coming up recently as I’ve slowly started to assert myself back into my community; and I assure you that I’m already exhausted.

I’ve said it before on the blog, and I will continue to write about how important I think it is to show kindness towards one and other. Life is heavy at the best of times-and you truly never know the impact you have on another person in a seemingly insignificant moment. Assume the best in others, because I truly believe we’re all just doing the best we can.    

A New Low

I never intended for this blog to take a dark turn. In fact there wasn’t much intention at all when I first started writing. It was a somewhat out of body experience the day it all just came pouring out of me.

I’ve shared authentically, and felt virtually naked standing here, writing about my fears, pain, and self consciousness. There have been euphoric moments of solidarity and connection to new communities, and existing ones. Had I known this would have provided me with such an overwhelming sense of self worth and purpose; I would have started many years ago.

That being said-it’s not so pretty and filled with courage present day. I’m calling doctors every other day to try and get someone on the phone.  Administrative assistants are now being more lax with their tone of frustration with me when I call, and ask the same question over, and over again.  It’s been 8 business days since my last CT scan. I guess in retrospect that isn’t an abnormally long time to wait-but it feels like it has been ages.

I wish I hadn’t done the right thing. I  wish I hadn’t braved my PTSD and booked that appointment in the beginning. I could have easily lived with a cracked lower bridge, and continued to chew on my right side. I had my lower bridge removed on December 17th, and since then I’ve fallen deeper and deeper into this new low. OI has surfaced like never before. I’m obsessively thinking about my condition. It’s like it has been in hibernation all this time-and somehow in this spring awakening it has crawled out of this cave with so many more intricate and complicated layers. 

I feel the weight of depression on my shoulders. Somewhat like a familiar old friend. I seek desperately for serotonin boosts in the simplest of things. On the days that I shower and wear something other than pjs I feel more accomplished than I should. I have this constant thought that poisonously makes me believe somehow that this is all a deserved form of torture earned from mistakes made in a past life. I don’t even want to cuddle Alexander or the cats. I feel so gravitationally forced into solitude.

I’d really love to be the type of person who could sit here and write about optimism and bravery in the face of adversity but I’ve committed myself to authentically documenting this raw and real journey so here we are. I’m not sure where this will lead, or what to expect but what I do know is that what I’m feeling is human, and connects me to myself deeper and deeper each time. To know yourself deeply is to know yourself during the highs, and also during the lows. In my 29 years there are a few things I’ve become certain of. One is that as the highs get higher, the lows fall lower too. You will see it all, from both sides.

I’ve had to prioritize myself at the sacrifice of those who depend on me. My fiancé, my best friends, my family. I feel the amount of which I have recoiled inward and know that it is felt by those closest to me. For the most part I know that I’m supported in doing so-but I think of them and acknowledge the absence they may be feeling, or the inability to rely on me at this current time. That’s a tough pill to swallow.

It isn’t all bad though and it won’t always be this way. Morbidly, I’ll admit I have this sense of comradery in knowing there is generally a sense of loom and gloom over our world at this time. I know we’re all experiencing some sense of isolation and longing to return to normalcy as we face the current climate of these covid-19 times. So at least there’s that. 

The Circle Game

I’ve long loved Joni Mitchell. She came to me at a very young age when I watched Practical Magic for the first time at a family friend’s cottage. I remember so vividly seeing Nicole Kidman sing A Case of You and feeling immediately entranced. Over the years I have found comfort in Joni, and I turn to her lyrics to find the words to describe some of life’s indescribable moments. I have processed some of my deepest feelings with her music in my ears. 

Tonight, The Circle Game came on, a song I’ve listened to many times before-yet this time a lyric from the song called out to me.


We can’t return, we can only look

Behind, from where we came

And go round and round and round, in the circle game

We can only look behind from where we came.
I’ve long believed that we are products of our experiences and environments. As I’ve processed this difficult time I realize how often I’ve searched within myself from the places I’ve come from-for comfort. It’s a type of self soothing nothing much else compares to. 

I’ve been feeling immense isolation this week. So many friends and family members have checked in, and sent beautiful words of affirmation. I feel so lucky to have this village of support surround me. Yet somehow there is this void within me that feels a very intense sense of loneliness. I’m not sure if it comes from the inability to directly connect with someone who’s currently in a situation similar to mine, heightened isolation due to COVID-19, or because there is a huge lack of social stimulation in my everyday routine. 
I’m just lonely. A type of lonely were given the opportunity to socialize, I’d still choose not to. But I miss my sister and the way she makes me feel deeply and spiritually connected to someone. I miss the way she makes me laugh and the way we can speak to each other without actually needing words. I miss my brother and the way he annoys Libby the family dog. I miss the way he is so effortlessly inspired by all the world that surrounds him. I miss my parents, because no matter how dark things feel-they always provide the guiding light home.