March 10, 2018 marks two years of life with a spinal cord injury. Two years that have passed in that familiar fashion where days are long but months and years are short. I know many people who say that one day I will lose track of the years, but I know myself better than that. I find dates orienting and acknowledging the time that has passed, grounding. When I think back to how I felt this time last year, at one year post injury, it amazes me how much my perspective has shifted. I now find myself more comfortable and confident in this body that – for so long – felt strange and unfamiliar. And a wheelchair that once felt foreign now feels like an extension of myself. While two years in the grand scheme of a lifetime is relatively short, those years can hold within them potential to be significant. With all of the changes that I have experienced, I would be amiss to say that these two years haven’t left a lasting mark. Continue reading “Two Years with a Spinal Cord Injury: What I’ve Lost and What I’ve Learned”
Category: Living With SCI
Confession. I don’t know how to put my wheelchair together. I mean, I understand the general placement of everything (big wheels in the back, small wheels in the front) but that’s about as far as my wheelchair maintenance knowledge takes me. When my legs were my main form of mobility I didn’t need to worry about nuts, bolts, lubricant and flat tires. Now, maintaining my mobility equipment requires a little bit more effort and know-how. At least that’s what my husband keeps telling me. Continue reading “I’m Clueless About My Wheelchair”
In an effort to pull both my house and me out of our Christmas hangover, we spent most of Sunday attempting to get organized. We went through all the junk that, over the holidays, accumulated on the counters and then got shoved into drawers in a hurry before company showed up. We sorted through the never-ending piles of paper that seem to come from every corner of our lives. While it always feels refreshing to de-clutter, organizing and purging does have its downsides. During this process, I always seem to come across little reminders – difficult reminders – of my accident, of life before, or of what has changed. This round of organization wasn’t any different, however along with the reminders, I found there was also a spotlight on how far I have come. It is the second time lately my attention has been drawn to this and it has resulted in a lot of mixed emotions. But after the process was over I was left with a smile on face because of the very last item that I found. Continue reading “From Then Until Now”
I’ve always been afraid of the dark (I slept with a light on in my room until I got married). There is something about the middle of the night that swirls my anxiety like nothing else. Those hours where your corner of the world is dark and quiet. Where life exists but it is subtle and difficult to spot. At 2:00 in the afternoon, a passing car is easily ignored. But at 2:00 in the morning it evokes questions and skepticism. A problem can seem much less significant at 3 p.m. than at 3 a.m. when distractions are few and reflection overcomes. Before I had children, I very rarely saw the hours between midnight and 6 a.m. Three kids later, those overnight hours were much more familiar but were spent tending to the needs of little people. It left little time to contemplate much other than the task at hand and calculating how much sleep I could still potentially manage that night. But without the distraction of a child – and nobody to blame for my conscious state – those middle-of-the-night hours make me uneasy once again and the inability to sleep brings up more feelings than I can keep track of.
When the attempts you make to sleep are in vain, thoughts begin to take over. Thoughts that turn to fears or imagined stories of how my life could be different. Some nights I play my accident over and over in my head wondering how in the hell it all actually happened. And some nights I go too far to get back to sleep on my own. The tears well up and no matter how much I try to breathe and stay calm, they begin to fall. They fall silently, without pause or consideration of the lasting impact they will have on my night. I reach over for Ian because in these moments, feeling alone just amplifies everything. Even half-asleep, he comes closer.
There is an attempt to ask me what has happened while also knowing all too well what is going on. The tears on my pillow start to dry as they now fall onto his chest. He does nothing but hold me and breathe. I can hear he his heartbeat, steady and comforting. His breathing isn’t laboured or distressed like mine; it is even, calm and reassuring. I look a little beyond him and see that our daughter has crawled into our bed at some point and I get a quick reminder of what is good. I think of my boys, sound asleep down the hall and for the first time I feel like I can take a breath. The dark of this night becomes a bit less terrifying. There is good. We are safe in our little corner of the world. We will make it to tomorrow.
Perspective usually comes with the light of morning. There is so much beauty at both dawn and dusk. But with the sunrise I feel hopeful at the day’s youthful beauty and with the sunset I can’t help but feel trepidation of the dark that will set in and commence the death of another day. Will I sleep tonight? Will I immerse myself in those painful memories? Will I get lost in fears that come with those late hours where sleep is expected but out of reach? Even the imagined path is harder to see in the dark. I suppose I will just have to wait it out. I will know the answer when I am, once again, safely in the morning light.
“We’ve been sold the lie that disability is a Bad Thing.” – Stella Young
It never ceases to amaze me how one short phrase can evoke such a strong emotional reaction. When I read the above quote on my Instagram feed the other day I was overcome by a lot of feelings. But high on the list were disbelief, annoyance and anger. I don’t think that I am often speechless, however when I tried to explain what I was feeling to my husband, I came up blank. Over the next couple of days, the phrase wandered in and out of my thoughts: “We’ve been sold the lie that disability is a Bad Thing.” Really, a lie? Call me crazy but I don’t think it’s a great thing. I wouldn’t even say it’s a good thing. No, I would definitely say that disability is a bad thing; I would say that disability sucks! Continue reading “Disability Sucks! And I’m OK with That”
We are home! We returned from our trip to Disneyland just over a week ago and I’m already suffering from California withdrawal (the unseasonably freezing-cold weather and isolated flurries here at home are not helping!). I was pleasantly surprised that our trip went so smoothly. We were all good and exhausted by the time we got home; you don’t go to Disneyland to relax. The trip was wonderful! Being able to still have these special vacations and memories with my family means the world to me. I’m excited to give you the rundown on our little getaway. Continue reading “Going to Disney with a Spinal Cord Injury – Part 2: The Vacation”
Travelling with your children is a very different experience from travelling without them just as travelling with a spinal cord injury is a very different experience from travelling without one. Travelling with both children and a spinal cord injury is the Mt. Everest of travel scenarios. As we prepare to head out on a family vacation, I thought I would give you the run-down on how this all works now that my spinal cord injury is part of the equation. After we get home I will share the good, the bad, and the (hopefully not) ugly parts of our actual travel experiences. Continue reading “Going to Disney with a Spinal Cord Injury – Part 1: the Planning and the Packing”
When you have children, there are a countless number of firsts. As parents, we carefully document every first as though our little ones’ childhoods depend on knowing the exact date that they first smiled. We track everything from their first teeth to their first steps to their first day of school. I find it sort of funny that we tend to document the firsts of things that will continue on for a lifetime but neglect to document the firsts of childhood and parenthood that are more temporary: the first time we hold hands, the first time our child falls asleep in our arms, the first time we carry our child on our hip. Unlike a smile that will (hopefully) last a lifetime, these are the things that will inevitably end. The part that breaks my heart is that most of these “mommy and me” moments end without warning – we never know which time will be the last time. For me, some of these things ended earlier than anticipated. Continue reading “Recapturing Lost Moments”
One of my favourite things to witness is the look on a parent’s face when their child starts asking me questions about my wheelchair. As a parent myself I know the exact feeling of dread that they are experiencing. The unpredictable nature of a child’s curious mind can be a stressful thing. I am not easily offended and love having children ask me questions while they try to wrap their brains around what they are seeing. I have yet to meet another wheelchair user who discourages questions from a child. Even so, I’m sure a lot of people have walked away from me wondering exactly how to explain a spinal cord injury to their child and answer their questions in a way they will understand. Continue reading “Spinal Cord Injury 101: Talking to Kids”
The world is full of well-intentioned people. I try to remember that. I really try to remember that. Understanding that an offer of assistance is packed full of good intentions helps me keep a smile on my face and annoyance out of my voice when I politely decline. But seriously. Saving everyone else’s feelings while my self-worth steadily declines isn’t really working for me anymore. What I want people to understand is that every offer of help is a reminder that my disability is seen before I am. Every question of “can I do that for you?” makes me think that you don’t see my capabilities; it makes me think that you don’t see me as an equal. So please, see me! See that I am capable. Being in a wheelchair does not mean that I am helpless and lacking in self-sufficiency. Continue reading “See My Abilities Not My Disability”