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 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 crept 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”
I like to be in control. I always have. It’s probably part of the reason why my mother-in-law and I took so long to forge a meaningful relationship. If there’s one thing you don’t want when you are a bit of a control freak mama, it’s a control freak daughter-in-law; a recipe for potential disaster. But somehow we make it work (love you Grammy). But beyond that, control has always grounded me and helped me to navigate through the fog of anxiety. Believing that I was consistently in control of my own situation allowed me to feel safer in a world that has continually left me trembling. I think it is part of the reason I hate flying so much – the lack of control. Then there were the aspects to control that I never took time to think about because they were – as I believed – non-negotiable; the control of my own body. To relinquish control of something can be challenging. But to have it taken from you is like having the ground disappear from underneath you – trust me, I know the feeling all too well. Continue reading “Relinquishing Control”
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”
I had a dream a couple of nights ago – a dream I’ve had before. I was still in a wheelchair but could easily walk when I felt it necessary. For instance, I would wheel up to a staircase, proceed to stand and walk up or down the stairs and then continue on in my wheelchair. I’ve said before, the inability to walk is the easiest part of dealing with a spinal cord injury (it really is!). However, the sense of relief I feel in those dreams is like nothing I’ve ever felt before. It’s like realizing you can breathe just when you thought the oxygen had run out. And for a few moments, while I convince myself that I am not dreaming, life becomes easier. Continue reading “An Uninvited Dream”
I have never been one to venture very far out of my comfort zone. I’ve always preferred to blend into the crowd and let other people attract the attention. From high-school to dance, I was always a back of the class kind of girl. Since being in a wheelchair, I don’t necessarily have the luxury of going unnoticed (and if stairs are involved I also don’t have the luxury of going to the back of the room). In the beginning, it caused me a lot of stress to know that people saw me and that I could no longer feel completely anonymous within a group of people. I was constantly self-conscious every time I went out in public but, somewhere along the way, I stopped noticing the stares. Continue reading “Mind Over Matter – Getting out of My Own Way”