Today, December 3, is International Day of Persons with Disabilities. The theme for 2018 is about empowering people with disabilities and ensuring inclusiveness and equality. It’s a tall order for just one day. I’ve been somewhat privileged since my injury to be in a bubble of inclusiveness. I’m surrounded by family and friends who make it a priority to include me. I have a husband who does everything in his power to make sure I experience all that I can. I have this blog that is followed by people who take an interest in disability, accessibility and equality. But lately I am seeing through my bubble. I am noticing how foreign disability still is to so many who don’t have personal experience with it. I am noticing how quickly my concerns are ignored and how accessibility issues are disregarded. I am noticing how much work still needs to be done. Continue reading “A Bad Advocate With Good Intentions”
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. Continue reading “Sex Postponed Due to Tears – Try Again Later”
It’s 10 AM and I have yet to eat anything besides Halloween candy. I haven’t showered and the ridiculous night sweats I recently developed makes this all the more problematic. Last night’s episode (along with the sports bra I wore to bed) left my skin a lovely shade of hot pink – and yet I still haven’t showered. And the last thing I have time for right now is writing. So why am I here? I’m here because tomorrow we are leaving for Hawaii and while I was extremely nervous to book this trip when it was proposed a year ago, the changes in me since that time (especially over the last few months) have recently stood out to me and I wanted to share. Continue reading “When Surviving Becomes Living”
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. Continue reading “I Want My Body Back”
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. Continue reading “Accessible Parking – Necessity Not Convenience”
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. Continue reading “Periods, Birth Control and Spinal Cord Injury”
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. Continue reading “Spinal Cord Injury Awareness Month – My Life is Good”
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. Continue reading “Spinal Cord Injury Awareness Month – My Biggest Unseen Struggle”
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. Continue reading “I Survived My First Camping Trip with a Spinal Cord Injury (And Tips on How You Can Too)”
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. Continue reading “Lost in the Forest of Anxiety”