It seems obvious that our lives are shaped by the big decisions we make. While choosing a spouse and a career and purchasing a home are all significant time stamps in life, I often think that it is the countless little decisions we make every day that ultimately pave our path. The what-if scenarios can be never-ending when we start to think about the seemingly insignificant choices we have made. Continue reading “Contemplating the What-Ifs”
The thing I hate most about the grieving process is everyone else’s expectations of its progression. That, and the ability it has to hit you without warning. It has been a difficult week for me; there have been a lot of tears and a lot of ‘why me?’. I don’t know why I plague myself with that question when I know there is no answer. I do not believe everything happens for a reason; I do not believe there was purpose in my accident. I believe life changing moments can happen to anyone at any time and there is always a choice in how one chooses to cope. Still, it’s unbearably frustrating some days to think about all of the people in this world who choose a life of hate or crime yet get to roam the world as they please. The days I try to understand why are never easy days. Continue reading “Momentarily Defeated”
I often play back my life like a slideshow – moments upon moments of what makes up my story all waiting to be put together for when I choose to reminisce. The slideshow I play inside my head changes with each part of my journey I recollect. The emotions that they arouse are varied and can change depending on the season of life I’m currently in. In many scenarios, my accident is a part of that slideshow – it changed my life forever and is a tough detail to overlook. In most cases I can include that crazy turn of events and move past it into the life that has unfolded since. I can see good in my life and recognize my accident as a major event but not an ending. However, there are a few scenarios where my slideshow stops abruptly – a few scenarios where I get stuck in my post-accident haze and place blame for certain things it took away from me. Recently one thing in particular has been at the forefront of my thoughts: baby number four. Continue reading “The Child Paralysis Stole From Me”
As I sit here at the beginning of May, I feel like I should be refreshed and ready to start something new. Instead, much like the weather here, I am left with a winter hangover – cloudy and dark while attempting to brighten up. I’m struggling to comprehend that April is over and, like so many other people, I feel like time is passing by too quickly.
Time has a strong hold on all of us; a universal language that the world needs in order to function. It controls our lives more than anything else. We put it on a pedestal and give it more credit than it deserves. We say that time can heal but that is simply not true; saying this just promotes the idea that we should sit around and wait for wellness when in fact it takes hard work and harsh truths.
Time does nothing but exist.
Seconds tick by in a relentless fashion – steady and constant without pause or consideration. And although time is persistent and uncaring, it is precious. And in the end, this spinal cord injury has robbed me of time. Minutes become hours that now belong to this injury and not to me. I lose time with my family, time with my friends and time for myself. But in an effort to escape the dark emotions looming over me, I am trying to be grateful; I am choosing to be grateful.
There are people in this world every single day that run out of time. I’m lucky that I am not yet one of those people. Had my accident happened 50 or 60 years ago, I very likely would be. It wasn’t until the latter half of the 20th century that people with spinal cord injuries were given a reasonable chance of recovery. Until then, a spinal cord injury was considered ‘an ailment not to be treated’.
Think about that for a moment. The injury that I sustained would have been left untreated. I would not be here writing any of this blog to you in any sort of capacity…because I would not be here, in this world, at all. I would have had an accident and been left to die, most likely, from an infection. Time’s up.
In that paragraph alone there are so many things to be thankful for: my life, science, knowledge, curious individuals who make progress in all areas of the world…just in one little phrase. But what I’m finding in reality is that when I find something to be thankful for, I also find something to mourn. It feels as though I’m stuck inside of a Newton’s Cradle just constantly switching between conflicting emotions.
When I’m proud of myself for conquering something new, I’m also annoyed that I was put in the situation of having to conquer it. When I’m grateful to have more time with my children, I’m also sad that it is time spent differently. There are few things in my life that are unchanged and most activities come with a reminder of how it used to be and, with that, a sense of grief. However in the spirit of being grateful, I can think of one activity that always makes me feel exactly as it would have before my injury and that is a family ride in the car. It can make a mama crazy when everyone is buckled in with nowhere to go…and it does! But some of my favourite moments that we have had as a family since my accident are in the car, choosing songs one at a time and singing along with more passion than what is necessary for our audience of zero. It is loud and silly and nobody needs to use their legs. In all of that – it feels normal. I’m grateful for that.
A tactic I use when I have no other tactics left is ‘it could be worse’. Sometimes this feels selfish because for some people, it is worse. But I cling on to the abilities, experiences and time that I have; the things that did not get taken from me. Yesterday, I felt tears sting my eyes when I took my daughter’s tiny little necklace and did it up around her neck for her. I know that it seems like such a simple task; it is something most people wouldn’t think twice about. But losing function in your legs makes you understand and appreciate the functions that remain. And in that moment of doing up her necklace I was overwhelmed with a sense of gratitude – for the abilities that I still have (at that moment my hand function) and for the fact that I am not just a memory; I am thankful I am still here to make memories. In a world where heartache is present on every newsfeed and every headline speaks of the unpredictability of life, I will never forget the privilege of having more time.
Maybe time is just a unit of measure but it implies so much more. I am thankful for every second that ticks by that I am present for, but I want to live my life in the moment instead of hoping for more of them. I want to surround myself in love and show the company that surrounds me that I am interested and existing in the present with them. I want to build memories now so that when life takes those unexpected turns we all have something to hold on to and find resilience in. I want to give time less authority and be more purposeful in everything that I do. I want to refresh.
And look at that…the sun finally came out today.
Distraction can be a great tool…I use it often. Between the day-to-day time-consuming tasks of having a spinal cord injury; the-day-to-day tasks of having children; and the day-to-day tasks of being an adult, I don’t have to seek out too much distraction. When I do find myself with a quiet moment and my thoughts start to wander I usually put on music or Netflix to keep my mind on only what I’m prepared to deal with. However sometimes the system fails and distraction doesn’t come easily.
The boys were at school and my daughter was quietly watching a movie. I was putting away laundry. I had left my phone in the other room and so I was, very unusually, sorting pants from pajamas without Ed Sheeran playing in the background. I was hanging up my daughter’s shirts and thinking that, at 2 years old, she clearly has a shopping problem. At that point my mind began to wander and as I was mentally going through the upcoming weeks on our calendar, I eventually landed on my dad’s upcoming heart surgery.
I think a lot about this approaching event, but today it took a different turn. For once it wasn’t about my dad, but about the rest of us. I pictured us all waiting through surgery – just as we did 6 years ago for the same reason. I remembered that the wait was long and anxiety provoking. And as I sat in my daughter’s room trying to decide if the pajama pants I was holding were hers or her older brother’s matching ones, I thought “it’s easier to be the one on the table – same result without the stressful wait”.
And in that moment my mind switched gears. I was no longer thinking about the future but was thrown into the past. I went back to March 11, 2016 – the morning of my surgery. However my thoughts were not of me; my thoughts centered on the hours that I was on the table…briefly and blissfully unaware of everything. I stopped the laundry (I had run out of hangers anyways) and thought about the waiting room that I was not present in – where in a strange turn of life events, everyone was waiting anxiously for me.
A new friend challenged me recently to look at my accident from different perspectives. So when my mind wandered to this event I didn’t back away from it; I didn’t go find my phone or abandon the laundry completely and join my daughter on the couch. I thought about this day, not as a moment in my life, but a moment in the lives of all of the people who were waiting for me.
I have been told bits and pieces of what happened in those hours. I know who was in the waiting room and who was waiting by their phones. I know who was doing everything they could to fly home. I’ve seen the countless messages that came in. I’m in awe of all of the people who stopped living their lives on that day in order to find out what was happening with mine. And when I think of everyone who waited, I am humbled…I’m reminded that this accident did not just happen to me.
This injury is not all about me…some days I forget that. I think, just for now, let’s take me out of it.
I see my sisters and brothers (the in-law variety included) all in a fog of disbelief. I know they were feeling thankful that they hadn’t lost their sister but unsure of the nature of our lives together going forward. All of them were trying to stay hopeful…for themselves and for everyone around them.
I can imagine my in-laws catching random flights to get home from Mexico. They received the phone call that you never want to get while on vacation – ‘there’s been an accident’. They were thousands of miles from home while their daughter-in-law was having surgery and their son was dealing with the hardest thing in his life to date. They felt helpless…and for them that’s a big one.
I think of my parents…they were in shock and very unsure of what this all meant. Their daughter, who they watched take her first steps, had just lost the ability to walk. Their baby girl was face down on an operating table while a surgeon removed pieces of her spine. Their hearts were breaking because their child was in pain and nobody ever wants to see their own children in pain.
I can picture my husband, surrounded by love in that waiting room but still feeling alone because I was not with him. I know how strong he was. – I can hear him telling everyone else that everything was going to be okay while really being terrified that it wasn’t. His best friend, his love, the mother of his children was a trauma patient. His world had flipped upside-down and yet he was left standing while his wife was most certainly not. His life was going to look different forever but in this moment he was uncertain what that meant.
I have read the messages that went back and forth between my husband and our family and friends – words of confusion, encouragement, love and a lot of ‘she is in surgery and we will know more when she is out’. Family and friends who felt far away but wanted us to know that they were with us – that for a few moments their lives stopped too in order to be with us and to wait.
So many of these people, as I would expect, were able to go back to their lives. The physical injury is mine and mine alone to overcome. But there is an aspect to this injury that belongs to all of these people…some more than others. Being able to share the burden of my accident with other people who consider it to be a part of their story as well is something I am thankful for. I am not the only person who has terrible memories of the hours, days, weeks and months following my accident. I am not the only one who carries this…and I need to remind myself of that more often.
Now when I think about my dad’s upcoming surgery I realize even more that while it is his journey and the physical burden is his and his alone to overcome, it is a part of all of our individual stories. He is our dad and our dad is going in for heart surgery…that will never, not be a part of our journey. And we will stop our lives in those moments so that we can wait for him while he is briefly and blissfully unaware.
As I bring my mind back to the present I realize that I did, in fact, abandon the laundry. This is what happens when I don’t have any music to sing along to while I do chores…they don’t get done! But the realization that I’m truly not alone (and neither are you, Dad) is worth ditching the laundry for. I am not alone because there is so much love in my life. And I’ve listened to Ed Sheeran enough to know that sharing the burden of life’s heartaches with those that we love is just the price we pay for really living.
“A life with love is a life that’s been lived”
Fashion-forward I am not. I would love to claim the title of ‘fashionista’ but unfortunately, for me, my sister got the fashion sense in the family. You would think my sense of style would have benefited over the years but she is also pathologically unable to say anything that might hurt someone’s feelings so basically everything I would try on for her looked ‘cute’…so benefit me, it did not.
Essentially I struggled for almost 29 years to appear stylish-while-standing. I was always at least a year behind any sort of trend because I wanted to make sure it was really sticking around before I tried it. I also needed to be positive beyond a reasonable doubt that I was not wearing it incorrectly. It took me at least two years to wear leggings and a good three years to venture into the world of skinny jeans. I would say the last year before I fell I was getting comfortable in my own style. But a lot changes when you’re no longer vertical.
Trying to find outfits that work while sitting down all of the time has proven to be tricky. A lot of pants are uncomfortable because they sit really high; shirts ride up if they aren’t long enough; jackets don’t do up properly; boots are sometimes impossible to get on without zippers in the right places; feet swell making some footwear impossible; loose tops make me look super wide; tight tops aren’t always very flattering (more the ‘mummy tummy’ issue); and you have to be able to get everything on while sitting down. Essentially I would rather go back to the sleepless early days of parenting than get dressed every day. There are lots of fashionable wheelchair users out there posting their ‘outfit of the day’. I’m over here wearing the same outfit at least three days a week so clearly I have some work to do.
I enjoy looking nice but I really struggle to find clothes that work for me. My closet was still full of so many things that were no longer suitable for me. I waited over a year but I finally went through everything and bagged it all up. Some of it I loved but it didn’t fit right anymore. Some of it I wore at the hospital and rehab and I couldn’t wait to see it head out the door (I would have burned it if that wasn’t socially irresponsible). But it wasn’t any of those things that got me to the point of tears. Believe it or not, I started to cry when I went through my socks and underwear.
Okay, so hear me out. I was always a thong girl…they were all I wore. Except now it feels pretty dumb to wear a thong – it’s not like visible panty line is plaguing me. Honestly, I would kill for someone to be able to see my panty line at this point. Regardless,I got rid of every single one of them but was still managing to hold myself together. What really got me were my foot socks…you know the ones that only cover your toes and heel so that you can wear cute shoes with a barefoot look without your feet getting sweaty and gross. There is no purpose in me wearing them now because the shoes I would wear with them fall off too easily. Also my feet don’t get sweaty anymore (another para-perk). Throwing out those socks made me feel like I was giving in and saying goodbye to something that just felt like ‘me’. Our house used to be scattered with my little black socks. Never a pair…always just one. It feels like forever since I have seen that and I know that I won’t ever see that again. I mean my kids leave their socks lying around but that isn’t cute and endearing like it was when I did it. But looking at all of those stupid socks in a pile, untouched for over a year, brought me to tears.
I have never had to clean out a closet after someone died but I imagine this felt similar; memories attached to things that I wish I could experience just one more time. What I have lost weighs heavily on me tonight. I know that in time it is something that will feel distant and other things will become ‘me’. Like maybe the paint chips on the doorframes from when I hit them with my wheelchair. However tonight I am mourning the woman I was before; the woman who wore thongs and little black socks every day. I don’t feel like that woman anymore but I am slowly feeling more confident in the woman I am now; the woman sans thongs and little black socks.
For months after my injury I woke up every day hoping that it was all just a bad dream. There was always a brief moment of hope and possibility before reality hit yet again. It’s been a long time since I’ve felt that way; it’s been a long time since the fog of disbelief lifted. However some days I still wake up with that familiar feeling of ‘maybe it was just a dream’.
The feeling is ever so fleeting as that blissful half asleep state quickly morphs into full consciousness. But still I take a moment and doubt the severity of my paralysis. I manage to block out what has become ‘normal’ and find again the skepticism that I felt daily for so long…”do they really not work at all?” I can see everything: my legs, knees, ankles, feet and toes. It all still looks like mine. It looks like they should work – they must work. And so I try to bend my knee; move my foot; wiggle my toe. I stare at my lower body as if eye contact has been the missing link all along. Sure enough, nothing happens. Yep, still paralyzed. I would have better luck willing my husband’s foot to move.
Once the non-functioning state of my lower body is once again established I do a quick run thru in my head. It’s like the movie 50 First Dates where Drew Barrymore has no memory and watches a home movie every morning to bring her up to speed on her own life.
So you had this terrible accident where you fell down a hole. There were ambulances and surgery. Then that moment you were told you would never walk again among many other things. Then there was rehab, living with your in laws and eventually moving back home. You now pee through a catheter and will live life as a paraplegic forever. All caught up? Great. Go on and enjoy your day.
And with that I’m up to speed yet again. Not a dream. Real life. Must live it.
But what does it mean to live it? Well if you hit up social media it seems to mean that you have to be exceptional and you have to push limits and prove to the world that you can achieve anything. That’s all well and good I suppose but it’s not for everyone. I have a bit of a different approach after a long year of internal debate.
Throughout my entire recovery process I struggled a lot with advice and expectations. Early on, all of my healthcare providers wanted to tell me exactly what the expectations were for my recovery at my injury level (T-11) which were mostly textbook and felt very clinical. Then there are the general population’s expectations of what it means to be in a wheelchair. Plus then I had my own expectations of my life and myself.
There was also a lot of advice, mostly unsolicited, about the best ways for me to move forward. I should pray (I did for a while), I should trust my doctors (makes sense), I should get second opinions (sure, thanks) I should try this alternative therapy (there are downsides), I should keep my leg muscles moving (oh OK), I shouldn’t keep my leg muscles moving (interesting), take the meds (yeah they help), don’t take the meds (oh right meds have side effects), God works miracles (apparently not on me) and my personal favourite…just tell yourself to walk (ha! yeah that should do the trick).
Then you hear the stories about that friend of a friend who walked again or the one who defied all the odds. There are motivation pages out there that encourage you to be epic and reiterate that you can do anything you put your mind to.
When I finally sorted through all of this noise, I was left feeling overwhelmed and confused. Most of it made me feel that if I didn’t walk again then I wasn’t trying hard enough or I wasn’t good enough. It made me think that the only way I could be happy was to be working towards this goal of complete physical healing. That’s when I decided to block out the noise.
I do not believe that I can accomplish anything I put my mind to. I have limitations. I don’t expect to walk again. My efforts and my time can be much better spent attempting to become the best version of my paralyzed self. And the best version of myself will just have to be good enough. Spending hours of my life working towards a very unlikely goal only leads to wasted time.
But why am I telling you all this? Well, someone asked me recently what advice I would have for someone who is newly injured. My initial response was to say nothing. After all of the time I spent mentally sifting through unwanted advice all I could think to say to someone else is to ignore everything. However after thinking about it for a moment I did have a few things to say. Things I will write here for someone who is searching.
- Find something that you love to do that is still easy for you – something that helps you momentarily forget. And in those moments that you feel sad or weak or helpless, seek out that thing that you love to do…because you can still do it and it still makes you happy.
- Don’t stick yourself inside a box of expectations. There were things that I imagined I would never do again after a just few short weeks of recovery. I have accomplished so many of those things that I had decided were no longer options for me. I just had no idea at the time that I would have the opportunity or the ability.
- Be kind to yourself and take things as they come. Don’t give yourself deadlines for your recovery. Having goals are great but allow yourself to work towards them with patience and grace for your limitations
Essentially my advice is to live your life in a way that makes you happy. Do what you need to do in order to be satisfied with yourself. Work hard and put in the effort to be the best version of yourself in whatever form you are in. Don’t worry about what other people are accomplishing, only worry about your own journey and what you need to accomplish to feel complete.
It’s not easy. There will be days you will wish it was only just a dream. There will be days you wake up and have to quickly replay your story before feeling ready to start your day. There will be hard days and days where you want to give up. And there will be times you fail…but as long as you keep trying then it isn’t really failure at all, just another chance to prove to yourself that you can survive.