Category: Living With SCI

Spinal Cord Injury Awareness Month – My Life is Good

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”

Spinal Cord Injury Awareness Month – My Biggest Unseen Struggle

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”

I Survived My First Camping Trip with a Spinal Cord Injury (And Tips on How You Can Too)

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)”

Seeking out Summer

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. Continue reading “Seeking out Summer”

Obviously Invisible

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. Continue reading “Obviously Invisible”

Three Things Paralysis Taught Me About Marriage

“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. Continue reading “Three Things Paralysis Taught Me About Marriage”

In Search of a Runner’s High

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. Continue reading “In Search of a Runner’s High”

Did You Notice I’m Paralyzed?

Lying in bed the other night, after a day that wasn’t unlike any other, I found myself suddenly apologizing. “I’m sorry I’m paralyzed”. My husband looked at me in that way he looks at me when I’ve said something completely unreasonable (I’m unreasonable fairly often so I know the look well). He jokingly told me to shut-up and we moved on. But as he drifted off to sleep I started to think about the kind of attention I bring to my injury. In many cases it is a joke or a comment to employ a sort of pre-emptive form of damage control. As though if I mention what I feel is the elephant in the room, I then take control over any obstacles that may arise because of said elephant. But I often also find myself apologizing for things that probably don’t require an apology. These are things that stem from the fact that I’m paralyzed. And paralysis, to be clear, is beyond my control (I triple-checked). So instead of falling asleep that night, I contemplated my approach. Why do I bring attention to my differences and apologize for my limitations? And should I stop? Continue reading “Did You Notice I’m Paralyzed?”

Defining Strength

What is strength? In the midst of this women’s empowerment wave we are riding, how do we define what it means to be a strong woman? We strive to be them, we strive to raise them and we strive to surround ourselves with them. But what is it that makes them? The definitions are evasive and become skewed by perception and tainted by experience. Strength is a very personal battle. It is having the persistence to go after the things in life that you deem important. It is about knowing yourself and your boundaries. It is about prioritizing your life so that it feels authentic to you. And because everyone has their own idea of what life is all about and what comes easily to one person may require a lot of effort from another, we end up with personal beliefs on what it means to have strength. Continue reading “Defining Strength”

When Your Daughter Discovers You’re Different

Raising our children to be accepting of all types of people has always been a top priority for me and my husband but it was never a personal battle until after my injury. As two young, Caucasian, able-bodied, straight people we were never in an obvious minority. We never felt singled out for attributes we had no control over and we blended in to our community without effort. Then, all of a sudden, I found myself in a wheelchair and we didn’t blend in as easily as we had in the past. With stares coming from numerous directions, our determination to raise accepting children only increased. But how? How do you integrate something into their little lives if it isn’t something you see very often? How do you teach something without pointing it out and bringing attention to it? Then my children – and every child I’ve met since my accident -taught me a thing or two about acceptance. Continue reading “When Your Daughter Discovers You’re Different”