A blog banner with a picture of me sitting up in my bed wearing a black dress, a travel neck pillow, and a gold paper crown. Text reads "It's been a year."
Image: A blog banner with a picture of me sitting up in my bed wearing a black dress, a travel neck pillow, and a gold paper crown. Text reads “It’s been a year.”

Hi.

I haven’t done this in a very long time.

It’s been so long that I’m not even sure where to begin, because so much has happened in that window of time. And I know that can be said for everyone. This year has been a decade long. 

When I think back on what has happened since the last time I opened WordPress to write about my life, I feel like I hit a wall and it’s too high to climb over. I have tried doing this at least 5 times recently, and every time I sit here and try to piece together my thoughts and wrap my experiences up with a pretty little bow, I end up just closing my laptop and going back to staring at the youtube cafe I’m watching on my tv (have you discovered cafe ambience videos on youtube yet? They are the perfect quarantine companion). 

But I’m going to try again. Because writing is therapy, and that’s something I certainly need these days. And because if there is one thing I am good at, it is trying again. I know there is no perfect way for me to sum up such a monumental year for me, so I’m just not going to try to be perfect right now.

Our cold island of Newfoundland is currently being rocked by the UK variant of Covid-19, but for most of this last year it felt like a far-away thing to many of us. We were in a bubble, protected by the Atlantic Ocean and travel restrictions, and there were many months when we could go about our lives almost normally. I’m very thankful for that, because nothing else in my life has been normal this year. 

Back in July, while I was enjoying myself most days in my sunny backyard, I started developing some severe swelling in my lower back. I didn’t think much of it at first, because my body loves to be dramatic one day and then the next it’s usually like “Huh? What swelling? What dislocation? ” But this time, the swelling persisted. I began to notice that whenever I would sit down in a chair, I would immediately lose sensation in every body part that was touching that chair. It didn’t take long before I couldn’t lift my legs on my own, and I began to experience a whole new type of back pain. My doctor was concerned that I was developing something called cauda equina syndrome – named that because it causes lack of sensation in the parts of a body that would be touching a horse while horseback riding. I was monitored to ensure that it wouldn’t become a medical emergency involving spinal surgery, and luckily it did not. But it did have a lasting affect on me, because that day in July I sat my butt down in my wheelchair and then never really got back up again. Which is an incredibly dramatic way of saying that I “graduated” from being an ambulatory wheelchair user to a full-time wheelchair user, I’m not over here showering and sleeping in my chair because I’m now bound to it for eternity or anything. We never did figure out what caused this, but that is unfortunately a common thing for me. 

I was prescribed a custom, lightweight manual wheelchair, because my base model chair was no longer sufficient for the amount of time I needed to use it and it was causing more issues for me. And now, 8 months later, I finally have that new chair. It was a very long process of waiting for occupational therapy appointments, wheelchair fittings, and tons of paperwork for insurance claims. All of which was slowed down because Covid. As I write this I am sitting here in my house, in isolation while our city is locked down, waiting to join a Zoom meeting with my occupational therapist and a wheelchair seating tech. They are going to assess me in my new chair and then explain to Matthew which nuts and bolts he has to find and unscrew so he can make the adjustments I need. Everything is just a little stranger and harder to do now that we can’t meet people in person. But we’re an adaptable bunch.

A mirror selfie of me turned side on while sitting in my new black wheelchair with pink spokes.
Image: A mirror selfie of me turned side on while sitting in my new black wheelchair with pink spokes.

A few months before I was prescribed my wheelchair, back in the ole walking days, I was also prescribed some new AFO leg braces to help support my legs. I have a tendency to roll my ankles, and I also have this fun thing called Drop Foot where my legs get tired and my feet drag along the ground, which is a huge tripping hazard. Last week, right before going back into our new lockdown, I was finally given those braces too. I will try to walk a little in them, but now they are mostly to be used to keep my legs in a good position while I’m sitting in my wheelchair and laying down, in an effort to stop my calf muscles from shortening more. It feels weird to be given all of these things at once after being so used to waiting, but I’m thankful that I could get the tools I need before everything shut down again. Mind you, these braces also need adjustments that just can’t happen right now which sucks, but I’ll make do.

At that same appointment with my orthotist last week, I was also prescribed a new neck brace, because I have been having increasingly awful issues thanks to neck instability and a larynx that loves to dislocate on me. We had a really scary night back in September, when we were about to go to sleep and I turned over to put my book back on my nightstand and somehow fully dislocated my larynx. I couldn’t swallow, speak or turn my head, so we rushed to the hospital. About 15 minutes into our late night emergency room date, my larynx made its way back home, but that was the start of a new and slightly more terrifying chapter of EDS for me. I am now waiting very impatiently to receive speech therapy because my vocal cords have been pretty badly affected and I sometimes go weeks without being able to speak above a whisper. This new development is probably the hardest one for me in terms of acceptance. If you know me, you know how much I love to talk.

There have been other big and not so big things too, but it has all been so much that the thought of having to list out every medical concern and life change that has happened to me in such a short span makes me want to curl up into a ball and stare at the wall for awhile.

I didn’t expect to be here, like this. I know that no one expects that their bodies will stop functioning in the manner we’re accustomed to at such a young age, but I guess I just didn’t imagine the extent of it all. I knew all of these things were possibilities, but I didn’t know that they would happen all at once and so quickly. It has been a lot to take in. I have started talking to a therapist online about the emotional side of becoming disabled. We talk about grief, a word that I’m becoming increasingly familiar with these days. I am grieving the body that is always changing on me. I am grieving the future I had imagined for myself. I am grieving the loss of independence and spontaneity that come with no longer being able to easily navigate the world around me. Just piles and piles of grief, it seems. But I’m working through it. I am at a point where I can see it a mile off, wave to it and welcome it in for awhile, and then slowly make my way to the other side again. I’m making room for myself to feel my feelings and I’m trying my best to be kind to me as I navigate life with a progressing disability.

My therapist has asked me to start keeping a list of all of the things I achieve every day, because she is trying to get me to change how I frame independence and success. One of my biggest hang ups is that I used to be able to do so many things on my own, and really cherished that about myself, so it’s a struggle to accept that I need so much more help from my husband and friends now. I’m trying to recognize how many of my feelings are internalized ableism and work through that. My list of achievements used to be things like “got a promotion at work, traveled to this place on my own, ran to the top of Signal Hill.” Now it’s stuff like “showered today, read a chapter of my book, didn’t fall down.” Adventures used to be getting off a plane and making my way through a city I’ve never been in before. Now, adventures are what I call my trips to Winners or Starbucks with Jonny, who has to lift my wheelchair to his car and then sometimes come back to help get me the few steps to the passenger side door. But those are really great days, too. My life is measured very differently now. And sometimes that hits me like a ton of bricks, and sometimes I am perfectly okay with it. I’m trying to stop placing things in a “good” or “bad” category and just reminding myself that it’s “different.” Yes, there are lots of things to come to terms with, lots of changes to accept. But I do manage to find joy in new, different ways now. Relaxing in my recliner with a cup of coffee and a book is a really joyful thing. Writing an instagram post that resonates with other disabled people and makes me feel connected to others is a joyful thing. Watching a movie with Matthew and Jonny on a day when I can’t get out of bed is a joyful thing. I am getting a lot of happiness out of the creature comforts of home.

Whenever I look back on this last year, my brain doesn’t immediately tally up all of the awful and leave it at that. It has to sort through all of the really good moments to find the bad ones. Even on the really bad days, I do manage to carve out little pockets of happiness and gratitude. As hard as this year has been, my husband and friends have been there every step of the way. My relationships have grown stronger while my body has gotten weaker (ugh what a cheesy sentence). There have been so many times that Matthew has wiped my tears, kissed my forehead, and told me that I’m perfect exactly the way I am. And I remember all of those moments of closeness from being comforted by him but barely remember the reason the tears fell to begin with. I’m isolating from the rest of the world in a bubble with Matthew and Jonny, and I feel safe and supported here. In our first lockdown there was a steady stream of friends and family showing up at our door with groceries and baked goods. My family are just a phone call away when things feel overwhelming. I have a large and very solid support system, which I am so glad for. I am wrapped in a blanket burrito of love every single time the grief creeps back in. I am offered comfort on the bad days and celebration on the good days. 

So yes, it’s been a year. My body keeps changing on me as soon as I start to get used to the newest version of it. Our home is slowly being overrun by mobility aids and braces. We’ve been up to our eyeballs in renovations to make the house more accessible and safe for me, and with that has come a whole other set of stresses. This year has shown me it’s fair share of pain, worry, exhaustion, and emotion. But all of that chaos pales in comparison to the stillness and contentment of feeling supported and accepted as I am, no matter which version of me exists each day. I don’t know what each day will bring. When I wake up each morning I am never sure which parts of my body will wake up with me and which ones I will have to make do without. Some days none of that feels okay to me. And some days it’s just how she goes. I am learning that both are acceptable reactions to such a big thing. And at the end of the day, I am still me and I am still loved.

Last night I read a beautiful essay in Time Magazine by one of my favourite writers, Rebekah Taussig. It was a piece about grief and joy and how both can exist at the same time, and it is definitely what prompted me to finally sit down and finish a blog post about this year. There was a paragraph that really resonated with me that I will leave you with:

“When I was finally able to sit in my loss, run my fingers over the precise ridges of pain, find language for the experience, that was also the moment I could take a deep breath, see myself and be seen, exist in all the spaces between life and death. Instead of devouring any bit of light in me, my grief brought into focus my scrappiness and the sturdy beauty of my friendships; it helped me piece together a road map to understand my anxiety; it gave me a fuller picture of my own strength.” 

5 Comments on It’s Been a Year.

  1. Wendy
    February 18, 2021 at 3:24 pm (7 months ago)

    Thumbs up on finally writing — I know that feeling of trying over and over again to write, and getting nowhere fast. Here’s the thing: you are absolutely adorable (cute dimples!) and I love the new wheelchair with pink spokes. Too cool.

    Have you read Kyle Bryant’s book called Shifting into High Gear? So, so good. The first time I read it, it was for the story itself. Months later I read it again and his brilliant philosophy came through beautifully. Actually made me look at my situation — or situ as the kids say — in a new way.

    Keep writing. We need people like you and Ardra helping us to feel part of something bigger.♥♥♥

    Reply
  2. MS warrior
    February 18, 2021 at 11:26 pm (7 months ago)

    Hi, our year has been so similar! My house too is filing up with mobility aids. Stationary bike, w/c and rollator. There are so many things I can no longer do. I also am finding it difficult to give up any independence to my family. I’m supposed to take care of them right?

    Reply
  3. Sue Jackson
    February 20, 2021 at 6:57 pm (7 months ago)

    What a wonderful, honest post. Thank you for sharing it and your journey this past year. I wish you better times ahead!

    Sue

    Live with ME/CFS

    Reply
  4. Katie Clark
    February 21, 2021 at 8:54 pm (7 months ago)

    I’m glad you chose to write. Thank you for your raw sharing. You are scrappy; I can tell. You will come through the grief with the love and support if your family and friends.

    Reply
  5. Sara
    April 21, 2021 at 8:41 am (5 months ago)

    I just found your blog and wanted to say thank you. As a fellow 30-something year old with EDS, I’ve loved reading your posts, which articulate my same thoughts and feelings so much better than I ever could! The past year has been so isolating, it is wonderful to know someome put there “gets it” so thank you. xxx

    Reply

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