I want my body back.
This is all I can think about as I blink back tears in the dark and quiet of the night. I always feel a pang of guilt for admitting it out loud. But I need to take a moment and allow this longing for my old self without shame.
I’m just waiting for someone.
I was only gone for five minutes.
I’ll move if somebody comes who needs it.
These are just a few of the excuses used to justify illegally parking in a handicapped parking spot. Out of all the things I expected to struggle with when I was told I would never walk again, parking my car was not one of them. And yet, here I am. And I am frustrated. I am frustrated with the lack of accessible parking and with the people who don’t think they are causing a problem by abusing the spots that exist. I am tired of people using tags that don’t belong to them, tags that are expired or no tag at all. I’m not a confrontational person and I do like to give people the benefit of the doubt by thinking that they are unaware of how crucial these spots are for the people that need them. So here is my attempt at spreading some awareness.
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.
Summer vacation has arrived! With minimal time to catch my breath over the last few weeks of school, I was definitely ready for a little break in the schedule. I’ve always loved summer. I have forever been a big fan of the long days, warm nights and relaxed attitude towards the everyday that comes with the season. But there is now a sense of dread intertwined with the excitement that I feel as summer approaches.
I went to the grocery store today – thrilling, I know. But I don’t go often. It usually either falls on my husband or we order online for pick-up or delivery. But the dog was out of food this morning and we didn’t have anything planned for dinner, so I figured I could make a quick stop. It may sound silly but grocery shopping makes me anxious. Between the high shelves, navigating carts and getting everything back to my car, I prefer the online method of grocery shopping much more. However, this trip would be easy. We only needed six things of which only one I expected to be too high (damn dog food). No need for a cart – I would just use a basket – and I could even do self-checkout. It would be simple; It should have been simple.
“He’s her lobster”. If you’re a Friends fan, you know exactly what I’m talking about. If you aren’t a Friends fan, well, you should be. But, surprise! Phoebe was wrong and lobsters don’t actually mate for life. What do mate for life? Beavers, penguins and lovebirds (obviously) just to name a few. As humans, we don’t always find ourselves on this list but sometimes we connect with another person who takes the fear out of making a lifelong commitment. You survive together when it’s harder than you ever imagined and you thrive together when life is good. Navigating my spinal cord injury (SCI) while keeping our marriage together has had its challenges, but I never once truly doubted if we would last. He is my lobster penguin.
I’m going to let you in on a little secret. I was never destined to be a world class athlete. I wanted to run at a reasonable pace around my neighborhood, keep up in a backyard soccer game, hike a few local trails with friends and buy an inexpensive bike from Wal-Mart to join in on those family rides around the block. Maybe I’d attempt some home workouts now and then. Maybe we would have all tried skiing together eventually. The point is, I liked being active and outdoors as long as it was relaxed and simple. I never did much that required a lot of equipment; I was happy with a pair of good runners and a yoga mat. But then there was that fall – and this spinal cord injury – and getting reasonably active got unreasonably complicated.