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My Love

I was going through one of my old journals and came across this poem that I wrote a few months after my accident and I thought I would share. Seemed like a good post to end off June.

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Living With SCI

The Pain in My Paralyzed Legs

For the first time in over 470 days, I am not taking any medications. After spending such a long time setting mental alarms to take pills, it feels strange to have gone even a few days without taking any at all. I imagine this medication-free period will be somewhat short-lived being as I already have a new medication in my cupboard just waiting for me to finally decide to take it. However, I wanted to acknowledge this strange journey through medications that I’ve found myself on and shed some light on the invisible ailments that cause me to seek out relief.

It is pretty much a sure thing that suffering a traumatic injury leads to taking medications of one kind or another. Initially there were a lot of meds for pain management. This may come as a surprise but breaking your spine and a couple of ribs is a really painful exercise. And apparently when you break said spine and are no longer walking around, your risk of blood clots increases. I combatted this for a few months by injecting myself with a blood thinner twice a day. Even though I couldn’t feel the injection in my thigh (another ‘para-perk’), I never got used to stabbing myself with those little needles and was pretty relieved when I was allowed to stop. I have been on medications to try and help with bladder control which was essentially useless. Botox has worked so much better (as I detailed here and here in my posts on bladder control). There have been pills to try and regulate bowel function and antibiotics for various infections. But all of these medications have come and gone. Continue reading “The Pain in My Paralyzed Legs”

Living With SCI

That Time I Was Waiting for an Elevator

When I first started to venture out into the world after my injury I felt like the most obvious human on the face of the earth. This was probably giving myself far too much credit as I am actually quite difficult to spot in a crowd. But justified or not, I always felt like everyone was looking at the woman in the wheelchair. Fast forward to today and I find that I don’t feel quite as obvious. I understand that people have more things to be concerned with than the woman in the wheelchair and that, generally speaking, if I carry on like there is nothing to look at, people don’t look (at least not usually for long awkward periods of time).

I suppose it is because I have convinced myself that I blend in to some degree that I was caught off guard a couple of weeks ago. I was in a professional building and I needed the elevator but I was waiting and checking my phone before I ventured down into the no-cell-reception parking garage. A man who was delivering boxes walked over singing and I looked up briefly and smiled at him. He looked at me and said, “oh are you having a problem there dear?”. I honestly didn’t have a clue what he meant at first but quickly thought he was referring to me waiting for the elevator – as in maybe he thought it wasn’t coming. I told him that there wasn’t a problem and I was just checking my phone. I assumed at this point that our conversation was over but I was clearly mistaken because he gestured awkwardly with his hand and said “no, no you uh are in a wheelchair there”

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Living With SCI · Uncategorized

Does This Wheelchair Make Me Look Fat?

I have struggled with my body image for all of my adult life (and even some of my adolescent years). I have been continuously obsessed over the number on the scale and the size of my clothes – so obsessed in fact, I could tell you my approximate weight and pant size every year since I was 15 (however doing so would be ridiculous so I’ll refrain. You’re welcome). While I have always felt especially self-conscious about my mid-section, looking back on photos of myself as a teenager and young adult would prove that those insecurities were unfounded (at least for a time). I wish I would have known that! Maybe on some level I did – I always tried to be sexy I suppose. I felt sexy when I was with my boyfriend turned husband and I wasn’t embarrassed to put on a bikini in public. Even still, I would fight all of the insecurities in private. Continue reading “Does This Wheelchair Make Me Look Fat?”

Living With SCI

An Inspiration By Default

We all draw inspiration from different places and different people. Although, if we are being totally honest, it mostly comes from Pinterest. However, I feel lucky in the sense that I have a lot of screen-free inspiration in my life. I’m surrounded by numerous people who motivate me to be better: a better mom, a better wife, a better friend, a better daughter, a better writer, and a better version of myself. And over the last year I have packed my newsfeeds with people who inspire me to continue this journey in life despite my physical limitations.

You would think that being called an inspiration would always be flattering. Clearly, it means you have done something that stood out to someone and really moved them in some way. But the term can sometimes lose its significance. The spinal cord injury (SCI) community continually battles with this description; one that balances precariously between complimentary and trite.

Since the very early days of my injury there were people who called me an inspiration. Initially I found it encouraging and, yes, flattering that I was seen in this particular way. As the months went on it became a description that I began to find somewhat demeaning. I think this happened for two reasons. One was because as I delved deeper into the spinal cord injury community I learned that it really was an overused term that many learned to dismiss. And two, because it felt as though I could never be acknowledged for any real accomplishments seeing as even just ‘not dying’ earned me this coveted title. I started to become bitter over something that was meant to be complimentary. This began an internal debate for me that I have struggled with for many months. It is more complicated than one might think. And while I have been called ‘inspirational’ by many, there is a difference when it comes from someone who is able-bodied versus someone who is living life with an injury.

A few weeks ago, I read something by Alan Rasof that really resonated with me. “People with disabilities don’t exist for the rest of us to feel inspired.” This is very true. My purpose in life did not shift with my injury and I don’t exist solely for the purpose of inspiring others. But is it so bad if the way I live my life motivates someone else? Maybe it’s not why I exist, but if it happens in the process I’m not sure I think that is a bad thing.

There is a big goal in the disabled community and that goal is to normalize disabilities in the world. We want the world to change so that an achievement is no more impressive when accomplished by someone with a disability than someone without a disability. I understand that the objective in this is to prove that we are capable individuals; we are still people with ideas, talents and know-how. I also understand the desire to want to prove all of our abilities to the world and how important it is for people to know. However, while I don’t think there needs to be a big production about achievements by those with disabilities (I know we are just as capable). I do think we, as a community, need to recognize that there has been adversity in our life that a lot of people cannot imagine. And while it may be just part of our day-to-day, it is full of obstacles that seem far from ordinary to a lot of people.

I truly believe that every person out there is capable of overcoming obstacles that they can’t even fathom. I believe that everyone has a resilience in them that they don’t know they possess (and will never know they possess) unless life throws them a reason to uncover it. A year ago, I never thought I would move on like I have but, turns out, I was wrong (phew!). However, no matter how sure I am that resilience exists in everyone, it doesn’t mean that everyone, when faced with a difficult situation, chooses to execute it. It doesn’t take away from the fact that I’m utilizing it. It doesn’t mean that it isn’t a quality to be admired.

Admiration can sometimes get a little out of hand and that is where I struggle. I struggle when someone sees me for all of one minute and because I am out in the world while in a wheelchair, I am an ‘inspiration’. I could be a terrible mother. I could be a terrible person. In these scenarios, there is generally no basis to be called ‘inspiring’ and I believe this is where the compliment becomes cliché and where the meaning of it loses its significance.

I understand that the general population is not intimately knowledgeable about life with a disability. It would be great if everyone easily understood that the different ways I accomplish things are what is required for me to get on with my day; I’m doing what is required for me to live my life. But it takes time for the world to understand something like that. Disabled people living in such a functional capacity amongst society is a somewhat recent development in human history and an entire minority doesn’t just integrate with the population overnight. It takes time. It takes decades, maybe longer. It certainly takes interest, education, and understanding. It takes the thoughts of “I could never do what she does and I want to know more about how she does it.” It takes patience.

There will never come a time that someone will hear the words “you are never going to walk again” and not be shattered. There will never come a time (until there comes a cure) that the changes a spinal cord injury brings to daily life regarding mobility, bladder control, bowel function and sexual function will not significantly alter a person’s mindset and expectations for their life. I don’t think it would be fair to change the world’s view in such a way that their expectations of a newly injured person are too great. The road to understanding shouldn’t undermine the emotionally charged and difficult journey that the trauma of a spinal cord injury brings.

When I was newly injured, I began searching online for inspiration. But what if nobody had been there for me to find? What if everyone living successfully with a spinal cord injury was considered status-quo and I was left to just fall in line because that was what was expected? I’m fairly certain I wouldn’t have had the same drive to recover without the honesty, transparency and inspiration of other wheelchair users. Wheelchair users such as Chelsie Hill, Rachelle Chapman, Ali Stroker and Claire Freeman (Instagram @chelsiehill, @rachelles_wheels, @alistroker @meesa_claire) just to name a few. I have a lot of gratitude for the motivation that I drew from others (and continue to draw from others) during my recovery. There were many days I needed to see veteran wheelchair users living their lives in order to get up and keep working towards living my life.

And that’s what I’m doing: living my life. I may not think that I’m inspiring or doing anything out of the ordinary, but I understand why some people may view that differently. I will no longer be bothered when I’m called an inspiration as it really is always said with good intentions. I definitely have hope that as time goes on there will be less mystery surrounding disabilities, but I don’t believe that there should ever come a time where overcoming a difficult situation is not commendable. However, I do urge anyone to think twice before calling someone an inspiration. Think about what it is they are inspiring in you or how you would back up your observation because it is a lot more meaningful when said with purpose and understanding.

 

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Love Through The Fear

Like so many, I am heartbroken by the recent events in Manchester. It was almost a year ago I wrote those same words regarding Orlando. Trying to comprehend the reasoning and calculated malice that goes into these acts of terrorism is enough to make you lose faith in the human race. Thinking about the innocent lives lost and the countless lives affected by these tragedies can make a person fear the world. And when the world and all of its pitfalls are so easily found on every media outlet it can become overwhelming. There is a flood of negativity with every swipe of our finger and the good-news stories seem much more difficult to find. There is an obvious sense of urgency in our society to fix these problems that stem from hate and anger, but so much uncertainty on how to achieve it. And while we hope for safety and we hope for answers, our hope is laced with bewilderment and fear.

From my earliest memories, I can remember always being afraid: afraid of getting lost, afraid of earthquakes, afraid of war, afraid of everything. As I grew up, the anxieties only increased and as an adult I have worked extremely hard to keep my fears in check. Now living with this disability, I find a lot of my fears surrounding personal safety are magnified. Every elevator I enter on my own raises the question of how I would escape the 2nd, 3rd or 15th floor in an emergency. When I drive I think of scenarios where the extra 60 seconds it takes me to get out of my car could be 60 seconds too long. I worry about every stranger I pass when I am on my own and I remain incredibly vigilant of my surroundings – all of the time. And as I sat on the floor of a very empty parking garage last week, without a cell signal or a wi-fi connection, I could only hope that the person who would find me was good and kind. Continue reading “Love Through The Fear”

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Paralyzed, Barefoot And 30!

It’s my birthday. I’ve always loved my birthday but ever since I turned 19, I have hated the idea of getting older. I don’t know why the number has bothered me so much. Up until a week ago I was saying that 30 just sounded so old. But I’ve changed my mind. Partly because a lot of my friends, all of my siblings and most of my cousins are in their forties (it helps a girl stay young), but mostly because of something I read the other day and everything it made me think about.

A memory came up on Facebook (as they do every day when you subscribe to the ‘on this day’ function). 10 years ago, I wrote that I was not looking forward to my birthday because turning 20 meant “a downward spiral into oblivion.” Initially I read it and thought that my 19-year-old self was quite the dramatic. As I thought about it more I realized that, while dramatic, she was also kind of right. While I didn’t make it all the way to oblivion, I definitely hit the bottom – spine first.

Continue reading “Paralyzed, Barefoot And 30!”