One of the most common comments I get from people is that my story reminds them to be thankful for the little things—the things that are so easily taken for granted. I would love to say that I’ve learned that lesson for good and always remember to thank my lucky stars for the simple things I am able to do but, alas, I am human. I am eternally thankful that so many of the struggles I faced in the beginning have become ordinary once again. However, as things became easier to do, they also became easier to take for granted.
I said I would kill myself when I turned 55.
Have you ever cried after sex? How about in the middle of it – bringing the entire sweaty, messy thing to a crashing halt? I cried last night. It wasn’t the first time – I’m sure it won’t be the last – but it was the first time in a long time and it caught me off guard. Sex after spinal cord injury isn’t something I’ve talked a lot about. I’m not sure why, as it seems I’ve talked about everything else. But for those of you hoping this is some sort of paraplegic’s guide to sex, I’m sorry to disappoint – may your Google search take you to a different corner of the internet. This is a little about sex, a little about loss, a little about adapting and, quite simply, another little piece of my story.
I had my period the day of my accident. I remember laying in the trauma room asking little to no questions about my injury but telling every single nurse who would listen that I had a tampon in. I didn’t stop until I was sure they had taken it out – it seemed unnecessary to add toxic shock syndrome to my list of current complications. Looking back, it was probably one small thing I felt I had control over. But, as all women know, we don’t really have control over our periods.
Spinal cord injury awareness month is still on my mind. My last post talked about the aspects of SCI that I struggle with the most: bladder and bowel control. But I was thinking about what awareness really means and how shining a spotlight on only the challenges can draw focus from the accomplishments and the awesome lives people with SCI are living – it can skew people’s perceptions. And while I think it is incredibly important for everyone to understand the struggles and barriers that someone with a spinal cord injury comes up against, it is equally important to understand that so many of us choose to face those challenges because we still want to live our lives – spinal cord injury and all. There is happiness, adventure and so many amazing things still possible and bringing awareness to SCI means showcasing that as well.
September is spinal cord injury awareness month and today, September 10, happens to mark two and half years since I suffered my injury and became all too aware of this condition. Seconds after I fell I can remember repeating to myself It’s just your legs. It’s just your legs. In that moment, I was comforted. Reminding myself that it was just my legs was reassuring me that I was going to be ok – I was going to survive and still be a mom and a wife and everything else that meant the most to me. I just would do it without walking. And frankly, I truly thought it was just my legs. It didn’t even cross my mind that there would be more to my injury than the obvious physical damage. As it turns out, the legs are just the beginning (and the easiest part).
While everyone’s injury is different, there is a long list of complications resulting from SCI that range from body temperature regulation to muscle spasticity to blood pressure issues and beyond. But the most difficult and devastating aspect of this injury for me (and for many) has been the loss of control over my bladder and bowels.
While camping seems like a rite of passage for many, I have somehow managed to avoid the ceremonious event for most of my life. My anxious brain tends to associate camping with being eaten alive by bears and swallowing spiders in my sleep – both, things I usually try to avoid. We had a trailer when I was a child but we would only park it at my uncle’s lakefront cabin with unlimited access to running water, a bathroom and a shower (really roughing it). When I was 12 or 13 I spent one night in a tent with a friend and her family and couldn’t get the zipper open fast enough in the morning to call my parents and beg them to come pick me up. After that, I swore off camping for good.
Most days I feel like I have found my place. I have purpose, independence and feel grounded in my sense of self which reaches far beyond the simple terms of mother, wife and paraplegic. I find safety in our routines and notice that I laugh far more often than I cry. My injury, like everything else, exists only as a part of me and I venture through the days and weeks much like anyone else. It’s as though I’m following a trail through the forest, not quite sure where it leads but enjoying it knowing I will come out the other side. Then there are days where I reach a breaking point. The days where I take a wrong turn and lose sight of the trail. My injury fuels my anxiety until I’ve blurred my reality enough to believe that without it I would never have to deal with anything difficult. And that is when I struggle to see anything except my injury; That is when I struggle to get out of bed.
Do you have a favourite place? Somewhere that holds a special place in your heart? A place you return to knowing it will look the same and feel the same every time you go there as though it stays frozen in time during your absence? The first time I came here, I was sixteen years old. It quickly became one of my favourite places.
Bathing suits. The worst, right? I loved them as a teenager – I had a borderline obsessive collection of bikinis all meant to show off my adolescent figure untouched by pregnancy, breastfeeding, age or the unexpected. But three children – three c-sections – a few too many extra pounds and a whole lot of negative self-talk later, bathing suits became the enemy.