I Got a Blood Clot from AstraZeneca…

Hello there sunshine and welcome to today’s post! 

First of all, in my corner of Canada we’ve been getting a lot of cooler weather and rain lately. I can’t even explain how relieving that is… For a wheelchair user who has to sit in an all black neoprene seat all day long, 35+ degree heat is like death covered in sweat. Oh yeah… and the rain is good for the fires…. But mostly just happy that I haven’t felt like a puddle for the last few days haha! 

So as you can see from the title, today’s post is kind of a taboo subject and not everyone will like it. However before I go on I’d like the reader to note. I 100% support COVID vaccinations and what happened to me should by no means be used to defer anyone from getting one. The series of events that lead up to me getting the AstraZeneca were unique to my situation, and had different decisions been made a different outcome would have resulted. I do not give permission for anyone to use my story to reinforce anti-vaccination. And regardless I am still encouraging everyone to get a COVID vaccine. There… Now on to the nitty gritty. 

I was like everyone else when the COVID vaccinations were released. I was very apprehensive, felt they were rushed, and the mRNA vaccines kind of terrified me. Also, my parents chose not to vaccinate me at all, so I had literally never had a vaccine of any kind in my life. So if I’m being honest originally I wasn’t going to get vaccinated. But eventually the medical logic and reasoning behind me specifically getting the vaccine was too strong to ignore. Now I’m not the kind of person to just blindly jump into something just because everyone else is doing it. So I did the best thing I could think of; I contacted a friend of mine who is a doctor in town and asked if she’d be willing to meet with me to discuss the vaccines. She graciously accepted and that evening we went for a stroll and talked. I brought up all my concerns with the vaccine, and like any good doctor she understood and validated them, but went on to explain the amazing technology behind mRNA vaccines. And honestly it was very intriguing and exciting to listen to, because well, science is cool. She also explained to me that the COVID vaccine’s main purpose is to prevent people from becoming seriously ill and dying from it. So really the benefit outweighed anything else, especially for someone like me who is high risk. Armed with new knowledge and a better understanding of the mRNA vaccines, I decided to give it a shot. Bad pun intended… 

March 24th was the day of my vaccine, and the circumstances that followed are really what caused what happened to me. That morning as Scott and I were sitting drinking our coffee, he mentioned an article he had just read about AstraZeneca and that blood clots had been linked to it. We might consider that our first sign… I said brazenly that I was sure we wouldn’t be getting AstraZeneca anyways, as they had only just started using it in Canada. I was pretty nervous about getting my first ever vaccine so I didn’t want anything to scare me ultimately. Off we went to the hospital to get the jab. When we were checked in, we received pamphlets all about the mRNA vaccines, so naturally I thought that’s what Scott and I would be getting. When we sat down with the nurse I asked her what vaccine we were getting. She said, “we have AstraZeneca today”. Second red flag… Uh oh, my heart skipped a beat. I immediately mentioned what we had just seen online, that me being wheelchair bound made me high risk for blood clots, and I was freaking uncomfortable with this. Everything I knew was about the mRNA vaccines! The nurse calmly explained that the blood clot instances were essentially one in a million, blood clots happen frequently anyways in people so they can’t be sure they are caused by the AstraZeneca, and there were “no contraindications” for me getting the vaccine. Contraindications… I heard that word a lot throughout this experience… I told her I was still kind of uncomfortable and asked if I could come back on a day when they had an mRNA vaccine. She said they didn’t know which vaccine they’d be getting on which day so no, they couldn’t do that. I briefly looked at Scott who was stoic as usual, quickly considered the facts I was just presented with, and made a snap decision to go ahead with it. After all, I had gotten myself all worked up and if I backed out I might not want to do it again. So I took the jab… Which as you’ll find out if you keep reading turned out to be a big mistake. 

Day 2 after getting the AstraZeneca vaccine. I had a fever, body aches, headache, basically everything they said I’d have. I for lack of a better term felt like shit. But I also had other symptoms. My leg, where I was given the shot because there’s not enough muscle on my arm, was swollen to double its size. I had a gigantic bruise that started from the injection site and went all the way up my back. My knee was red and hot and pretty painful. But I kept on keeping on, thinking everything was ok. Day 3 after getting the AstraZeneca vaccine. I woke up to see it plastered all over the news that Canada had removed AstraZeneca from the vaccine line up due to the blood clot risk. They were no longer giving it to people my age. Well shit, I thought to myself as I looked at my increasingly swollen and sore leg. What are the chances that I…. I immediately dismissed the thought, deciding that I was just being paranoid because I was seeing it all over the news. Day 4 after getting the AstraZeneca vaccine. My leg was massive from my hip down to my calf. Extreme pain, hot hot hot to the touch, and red. I finally broke down and called the public health nurse, who advised me to go to the ER immediately. I was stupid and didn’t go till a few days later, still thinking nothing was wrong and I’d look like a hypochondriac if I went to the ER. Finally a week after I got the shot, Scott forced me to go to the ER as my symptoms were not improving. 

I had blood drawn at the hospital and anxiously waited for the results. The doctor came in and said what I was hoping she wouldn’t say. My D-Dimer, the test used to diagnose blood clots, was positive. She was putting me in for an emergency ultrasound in Cranbrook. She did say the test could be positive for any number of reasons, not necessarily because I had a clot, but it certainly looked that way. So the next morning we rushed to Cranbrook to have my ultrasound done. I was still in a daze at this point, not wanting to believe this was happening. I had it in my head that they wouldn’t find anything in the ultrasound, and this would all go away. And for the first 40 minutes of the ultrasound that was true… In the last few minutes she went over the side of my left knee, and she stayed on that spot for a long time. Then she got up, went out of the room, and brought back a doctor. Shit shit shit I thought again. They both went over the spot on my knee again for what seemed like ages. Then the doctor looked over at me and said, “We’re seeing a large clot in the deep vein. You’ll have to be admitted to the ER here to be examined and given medication”. Say what now!? No no no, this is my first vaccine ever. The clots were supposed to be one in a million. How is this happening!? I looked over at Scott in a panic. He immediately took a deep breathe in, which is usually his signal for “calm the heck down and breathe”. Sure enough, at the end of the day I went home with a diagnosis of a 4cm blood clot in my left knee and a prescription for four months of blood thinners. And all I was thinking was maybe I should buy a lottery ticket… 

So the question I’ve been hearing the most since this happened is, “why wasn’t your case all over the news?”. Well there’s an answer to that… Not a good one but there’s an answer… Of the 5 doctors involved in my case, only two of them believe the clot was caused by the AstraZeneca. The type of blood clot I had was not the type being reported as being in association with AstraZeneca. I heard every excuse in the book as to why I got this clot. “You’re a wheelchair user so you’re at high risk.” “You’re on birth control.” After speaking with my gynaecology specialist, who happens to be the top in her field in Alberta, she said there was no way it was my birth control. I had been on this birth control for two years with no problems, and if I was going to get a clot from the medication it’d be within the first three months. She thought it was the AstraZeneca. The wheelchair user excuse honestly made me livid because it’s so hypocritical. On one hand they’re making it seem like if I wasn’t a wheelchair user and this happened they’d take it more seriously. On the other hand, they’re admitting that I’m at high risk for blood clots BECAUSE I’m a wheelchair user so… WHY WAS I GIVEN ASTRAZENECA IN THE FIRST PLACE!!?? Also, I had a D-Dimer for an issue in my right leg a few weeks earlier and it came back negative. I had no prior issues with my left leg prior to the vaccine, not even one. The top COVID vaccine managers, I’m sure there’s an actual title for them, told me there’s no contraindications (there’s that word again) for me to get the second shot of AstraZeneca. I told them they could go jab themselves… My doctor was absolutely livid about the situation, passionately stating that I should never have been given AstraZeneca in the first place considering my risk factors. I should’ve been given the choice to have an mRNA vaccine. 

So where are we now? I went through four gruelling months of being on blood thinners and dealing with the symptoms that come with them. Sun sensitivity, raw scalp, hair loss, nausea, unbelievable fatigue. I couldn’t take anti inflammatories or my CBD oil while on the thinners, which meant I had basically zero relief for my back pain. I couldn’t visit my chiropractor until it was confirmed that my blood clot was gone. The blood thinners caused me to have periods again, which due to my endometriosis were so extreme with cramping, I had to be put on Percocets. Which didn’t help by the way… I bled literally every second day. I bruised at the drop of a hat. Literally… if someone dropped a hat on me it’d probably cause a bruise… I was covered in bruises, especially where I wore straps etc. After going through four months of hell, I’m finally off the blood thinners. But unfortunately I might not be off them permanently. There’s now discussion about whether I should be on the blood thinners for the rest of my life, due to my risk factors, and now that I’ve had a clot I’m apparently more susceptible to them. So I’m going for more tests and we’ll see what happens. 

To summarize, when you look at the facts head on, it’s pretty undeniable that I got a blood clot from AstraZeneca. It was an awful four months and to say I’m thankful it’s over is an understatement. I’m now blood clot-less, a month ago I went and got Moderna as my second COVID shot, and I didn’t die. All good things… Could this have been avoided completely? Absolutely. I really hope in the future that when research and trials are done for this sort of thing, that people with disabilities are considered. 

So what have I learned from this experience…? Murphy’s Law really hates me…. 

Hello? Are you there?

Hello there sunshine! 

My well established bad blogging habits have continued, but for some unknown reason I have the writing craving again. Does anyone still read blogs in 2021? Maybe because of the pandemic we’ve all reverted to pre YouTube days… Reading? What is reading? Anyways! For better or worse I’m going to give this another crack and we’ll see how long I last.

My last post was in 2020 and I feel like it might’ve been pre-pandemic time. It’s kind of hard to imagine pre-pandemic time isn’t it? I don’t think any of us really knew what we were in for when we first saw COVID 19 flash across our screens. I was just like anyone else at the time, I thought this was just another flu like sickness that would come and go with no serious consequences. To start out with I was pretty brazen about it to be honest with you. I figured, well I have a good immune system and I only get colds once or twice a year that last three days so, I’ll be totally fine. Reality quickly slapped me on the face when my brother-in-law, who is a high level nurse, and my doctor informed me of the gravity of the situation. You remember my dear friend, Twisty the Spine? Well Twisty treats me pretty badly, he reduces my lung capacity in nasty ways. So I was basically told that if I got COVID, the consequences would be life threatening and most likely fatal. Not to mention at the time there was concern about having enough ventilators for those critically ill with COVID. I was abruptly told that if there was a shortage and it came down to me getting a ventilator, or an able bodied man in his 50s who smokes, they’d still give it to the able bodied man because well… He’s able bodied. Nice to know society values the lives of people like me right? I could go on a rant about that but I’ll spare you and my hair, which falls out when I get stressed. I lost a lot of hair in 2020…. 

Obviously my COVID risk was a huge shocker for us, so we had to make some pretty drastic changes. Keep in mind this was when we didn’t know much about COVID. My doctor felt that me living in an apartment with 30+ people wasn’t a good idea, so I abruptly moved into Scott’s house with him. Because my caregivers lived in shared housing, we felt the risk associated with that was too high, so I had to lay off most of my caregivers and just have Scott look after me. I have to take a second here to talk about how amazing Scott was and has been throughout this whole fiasco. He didn’t hesitate to move me to his house or become my sole caregiver, just to make sure I was protected and safe. He looked after me with little to no breaks for close to six months before we brought in other caregivers again. I have to say he truly was a hero, and he certainly deserves a lot of respect for what he did. I know a lot of people who felt they didn’t need to consider others who are less strong, so him stepping up like he did should really serve as an example of doing the right thing. 

The pandemic has really affected the disabled community a lot more than people care to acknowledge. For six months I went without having any of my regular treatments to deal with my chronic and sometimes excruciating pain. My Chiropractor’s office closed for a while, and it became increasingly difficult to even get appointments with my doctor. Most of the services I would normally use were shut down. There were so many people, especially in Fernie, who didn’t think COVID was real or that people like me who are immune compromised should be protected. So even leaving the house to go anywhere came with a certain level of anxiety. I honestly barely went anywhere for close to six months. Which is probably why I gained 20 pounds… We basically lived off takeout… 

I noted a few things during the pandemic that I thought were really interesting from a disability perspective. Firstly, services or even jobs that previously “could not” be put online were now suddenly online. So all those times I was told, “no we can’t accommodate working from home” or, “no we can’t offer that service online”, the pandemic just magically made that all possible. It’s amazing what can happen when it’s the able bodied community being affected as well… Secondly, it’s funny how the government has always said they can’t raise the disability income rate above $1000 per month, but then COVID hits and suddenly they’re able to pay everyone and their dog $2000 per month. Didn’t they just prove our point…? They CAN raise the rate, but again that only affects us so why would they? And lastly, I love how so many people bitched and were outraged about mandatory masks and that they couldn’t enter stores without wearing one. I haven’t been able to enter stores with steps my whole life, but ask an able bodied person to wear a mask to enter a store and suddenly you’re taking away their rights. I barely get to function as a normal person in society at the best of times, so watching people complain about wearing masks or not being able to do certain things was really quite comical. I’m sorry but it was… I just wanted to scream WELCOME TO MY WORLD PEOPLE!! 

Well that’s some pandemic perspective for you in a nutshell! I’m signing off for now, but join me again if I decide to actually make this a thing and do another post… 

Disability Pride

Well hello there sunshine! So for some odd reason I did not know that July was Disability Pride Month. Apparently I’m that much of a hobbit.... So I’m honouring Disability Pride Month with this post! Firstly, I am not one of these people who thinks disabled and disability are bad words that we should never use. I’m sorry, but I’m not.... I think the only way a word gains power is if we give it. If we treat it as just a word then that’s all it’ll ever be. I choose to be proud to call myself disabled, and by doing that not only am I saying disability is ok, I’m also encouraging society to look at the word differently. I am not ashamed of my disability nor am I ashamed of the word disability. Everyone has labels, and often they make up who we are. Black, white, First Nations, short, tall, etc etc etc. We all use them, disability is just another. It doesn’t mean I am my disability, but it does mean my disability is part of who I am. I think we do a disservice to society if we don’t use the word disability. Who better to show society what disability truly means than us!?
Secondly, I’m not going to blow sunshine up your ass and say that having a disability is some special gift that’s precious to me. Having a disability is just crappy 70% of the time. But not for the reasons you’d think, so let me give you some examples...

1. In BC, if a disabled person wants medical coverage, which includes coverage for some medical equipment, we have to become a registered Persons with Disabilities. But when you do that, you automatically are signed up to receive disability income assistance, which is a laughable amount of money that’s deposited into our accounts every month and we’re told to survive off it. For 99% of the population this amount is not enough to live a life, so you are graciously allowed to get a job. Yeah, good luck with that! But here’s the catch... You’re only allowed to make a minuscule amount every month, the government is up your ass making you report every penny you make, and if you go over a certain amount then you get cut off everything, including medical benefits. The amount you’re allowed to make is literally just enough that you could probably get a part time job at minimum wage. So if you don’t want to basically live in a financial black hole, the only option is to not be a PWD. But then you better have the best job in the world to make enough money to cover medical, the medical equipment you need, caregivers if required, etc. In summary, it’s a never ending cycle where essentially the government keeps disabled people well below the poverty line, and no one gives a crap about it.
2. Medical equipment, the essential stuff like wheelchairs, is NOT fully covered by the government if you’re over 18. If you’re under 18 the government gives out approvals like they’re candy. If you’re over 18, I guess you’re an adult and you should be able to figure out how to scrape up enough money for a wheelchair. You want to know how much a power wheelchair costs? Anywhere from 20 to 50 thousand dollars!! That’s right, and they get replaced every five years. The government only covers HALF the cost. So on my 32 thousand dollar wheelchair, they paid about 14 thousand, and left me to come up with the rest. Joy.
3. Despite the fact that disability is one of the largest minority groups in society, and that number is growing, society still thinks it’s ok to treat disabled people like second class citizens. I’m talking, “oh yes, our restaurant is accessible, but you have to go to the back door and go through the kitchen”. “Do disabled people really need accessible washrooms? They don’t go out in public anyways! Why should we make this event inclusive and accessible? It’s not like people with disabilities can live a normal life anyways!” Yeah... that’s great... 
4. People think that because I’m disabled I obviously don’t have the ability to get offended, therefore they can say whatever they want to me. You would not believe some of the things complete strangers say to me! On any given day, if I manage to get out in public because apparently that’s an accomplishment, I’ll hear things like “What’s wrong with you? Why do you look so weird? What happened to you? Do you even have legs? Are you able to be cured?” Because apparently I have to tell every stranger I meet my whole PRIVATE and very personal medical history. Oh and did you know, there’s something wrong with me? Hence why it needs to be pointed out daily. 
5. You constantly get judged by the way you look, which often dictates whether you make friends, get invited to things, get asked out on dates, etc. Having body positivity or feeling sexy as a disabled woman is extremely difficult. Between knowing that people do indeed think there’s something wrong with you, and constantly seeing examples of why a normal body is just better, it’s hard to feel confident and comfortable in our own skin. This gets perpetuated even further by society fuelling the lie that sex is everything in life. If you’re not having sex, if you can’t meet the standards of being sexy, if you’re not viewed as a sex symbol, then forget trying to fit in socially and don’t even try to have a relationship. People don’t equate disability with a healthy sex life. People don’t equate disability with being beautiful and sexy. No matter how much confidence I try to give out in society, which trust me isn’t easy when you have a body like mine, sometimes it doesn’t matter because literally all people will see is the disability. I legitimately had someone say to me once, “You know, you’re actually pretty good looking for a disabled person.” Wow! You mean disabled people can be attractive!? Call Einstein because I bet he didn’t see that coming! 
6. People with disabilities live in a world where everything, and I mean everything, is geared towards “normal people”. Events, social gatherings, sports, hobbies, employment, recreation, clothing, buildings and businesses, and especially advertising. Have you ever seen an advertisement, something that’s not already disability related, let’s say like a Covergirl advertisement, that features a person with a disability? What about something sports related? What about something adventurous? No!? Yeah neither have I.... Because disability is considered weak, people with disabilities are thought to not be capable of living a full life, society just hides us away. That’s where we belong right? Wrong! The only way the perception of disability will change is if it is boldly brought to the light. We are human just like everyone else. We deserve equal opportunities. Why? Because if the average able bodied person has those opportunities, why shouldn’t we? 
7. Our rights are constantly infringed upon or completely taken away, not only by government but by society as well. Oh you’re disabled? You don’t need privacy or personal space! Disability you say? I guess that means you can’t speak for yourself, here let us tell you what you need. Well since you’re disabled you don’t need to do things like go out in public, have a relationship, go to school, get a job, participate in events and sports and well.... Life! Our rights are constantly trampled on by society. But do you see that all over the news? No! Do you see massive groups of people supporting and rallying for change? No! Does anyone even care? Probably not. So while everyone is fighting for every other cause on the planet, excuse me while I try to go find an accessible washroom.... 

There’s obviously way more to the social injustices of having a disability, but I’ll leave it there. And the thing is, ignorance is not an excuse anymore! Disability has been around for decades, and it’s 2020, so you can’t tell me that people don’t know disability exists. The truth of the matter is, having a disability sucks and don’t let anyone tell you differently. If they do they’re in denial. BUT! Most of that suckiness (yes I know that’s not a word) comes from the societal view of disability. If that were to change then I’m sure the “suck-o-meter” for disability would go way down. Because honestly, when you take all the society crap away, having a disability does not mean having no life. It means having a full, and often more enlightened existence. I am capable of doing anything I set my mind to, and despite the many barriers I face, I have done some incredible things in my lifetime. And I’ve had to fight to have those experiences. Why? Because I am me, and part of me is that I have a disability. I can’t change that, so I might as well embrace it and move on with my life. We have a strong disabled community full of incredible people, and we need to rise up and be bold about our disabilities. We need to prove them wrong. We need to show them that we are human beings, and we do deserve to get just as much out of life as everyone else. The fact that there is disability in this world will never change, whether it’s through birth, conditions, diseases, or acquired. But what can change is our perception of disability. Society’s perception of disability. And guess what? You are society! So make that choice, be that change, decide to make a difference. You never know the places you’ll go.

Arth-ro-gry-whaaaat?

Hello there sunshine and welcome to today’s post!

Let’s just get this out of the way.... The world has gone bat sick crazy!! Ehehehehe see what I did there? But I think there’s enough media out there on the current COVID, economy crashing, clueless politician, greedy toilet paper hoarding crisis. So to lighten the mood, today I will be defining and laying out the intricacies of my disability. But we’ll start with a question... What’s it like to have an extremely rare disability? Well quite frankly.... It stinks! More on that later...

So what is my disability anyways? Get ready for the very bane of my existence as a kid. My disability is called Arthrogryposis, which is pronounced “arth-row-gry-poe-siss”. Yeah, try saying that when you’re seven years old and missing your two front teeth... The full name for it is Arthrogryposis Multiplex Congenita, which gives my autocorrect an aneurism every time I type it out. Thankfully there’s an abbreviated version, AMC, which I will be using for the rest of this post. Ok so we’ve established the name and how to say it, but what exactly is AMC? Well my friends at amcsuoport.org do a much better job at defining it, so I’ll let them take this one. “Arthrogryposis multiplex congenita (AMC), commonly referred to as arthrogryposis, is the medical term describing the presence of multiple congenital contractures. The word arthrogryposis (arthro, from Greek meaning joint, gryp meaning curved, posis meaning fixed) refers to curved joint(s) in a fixed position. Thus, arthrogryposis multiplex congenita means curved joints in many (multiplex) areas of the body, which are present at birth(congenita).” So now that we know what AMC is, I want to take a moment to debunk something I commonly hear, and something that irritates the hell out of me when I do hear it. AMC is not, I repeat NOT, a disease! That makes it sound like something you can catch… I did not go to sleep one night normal, and wake up the next day as a human pretzel. Nor did someone walk up to me and sneeze and several hours later my limbs started to shrivel up. One more time, my congenital birth defect, meaning present at birth, is not a disease. Most disabilities are not diseases. Are we on the same page? Cool. Now back to our regularly scheduled programming….

AMC affects a whopping 1 in 3000 live births, making it a rare defect. The cause of AMC is still not really known, but some research states it's a defect in the spinal cord and due to lack of movement in the womb. While the condition itself is not generally fatal, complex cases usually coupled with other conditions, can make some individuals with AMC pass away before they reach adulthood. Interestingly enough though, most people I know with AMC, myself included, were deemed to be unlikely to live past a few weeks old. So to that effect we are natural born fighters. AMC is not progressive, meaning that it doesn’t get worse as time goes by. In fact in a lot of cases, early surgery and treatments like physical therapy can improve upon things like range of motion and severe deformations. But, as people with AMC age, things like arthritis can make the symptoms of the condition worse. Here are some more random facts…. Most people with AMC are born with a red birthmark on their foreheads, called an angel kiss, that fades with age. AMC can affect one joint of the body or several, which means some people with AMC can walk and are very high functioning, and some people are permanently in a wheelchair and low functioning. A mild form of AMC is clubbed feet. AMC can affect any joint of the body, including the jaw. AMC is a form of Muscular Dystrophy. Most people with AMC are deemed to have above average intelligence (obviously…. ;) ) People with AMC are naturally sexy. Ok, I made that one up….

Hopefully this has been fairly easy to understand, but it can get more complicated. AMC is an umbrella term, but there are actually several different types of it; Amyoplasia, Distal, and Everything Else. To save time and energy I’ll just define the type I have, Amyoplasia (pronounced “ah-mioh-play-shah”). “Amyoplasia (A = no, myo=muscle, plasia=growth) means no muscle growth and is the most common type of AMC . It is estimated that one third of people born with AMC will have Amyoplasia about 1 in 10,000 and it’s typically referred to as ‘Classical type AMC.’ This is considered the non-genetic form of AMC, meaning there has been no mutation in the genes to cause the condition to be present, and is not passed down from the parents.” So there you have it! I’m a stiff, twisted, physically weak human being…. And that’s just what’s physically wrong with me…

I can only imagine what it was like for my parents, when their newborn baby was diagnosed with this thing they’ve never heard of, and the doctors were telling them, “You’ll be devastated when you see your child. She won’t live past two weeks. Maybe you should just walk away now.” Yup, this coming from the medical professionals… But after switching to a doctor who actually knew what he was talking about, my parents were positively enlightened that I’d have some challenges in life but my future was not all doom and gloom. Phew! But here’s the thing about having a rare disability… Most doctors don’t know what it is, let alone how to improve upon it. Most doctors look at me in a confused stupor when I enter their office… So when I was four, we traveled to the great state of New York, all the way from Canada, to see one of the very few specialists out there on AMC. And what did he want to do? Knock me out and cut me open with a knife… Thanks doc. The surgery is called a rotational osteotomy, and involves cutting the femur in three places, rotating it, and putting it back together with screws and a plate. At four years old having bone surgery, which is deemed one of the most painful kinds of surgery, was definitely not a treat and to this day has left me with some medical PTSD. But the objective was to fix a severe deformity in my leg so I could sit in a wheelchair, and that was thankfully achieved. I had one more surgery when I was eight to remove the plate and screws, thus ending my under the knife experiences. Were there more surgical intervention options available? Oh of course! But most of them wouldn’t improve my function much, just the aesthetics of my limbs, and I’ve pretty much accepted that I’m as sexy as I’ll ever be… ;)

But what’s it like to be a kid growing up with a severe and rare disability? Well just to recap, it stinks… And honestly sometimes it was very lonely and confusing. Not only did I have to navigate the normal aspects of being a kid, but I also had to face the fact that not only did I not look like other kids, I also couldn’t do most of the things they could. Plus I had this big ass clunky wheelchair strapped to my butt, which always stuck out like a sore thumb. I would always get asked “what’s wrong with you”, which was not only difficult because I didn’t really understand my disability myself let alone how to explain it, but it also made me feel like maybe there truly was something wrong with me and that was a bad thing. I mean, the fact of it was that I had never seen anyone else who looked like me. Or not until I was ten years old that is. We eventually got wind of a conference that happened yearly in the states, and amazingly enough, it was specifically for people with my disability. Could this be? Would I finally meet someone who looked like me? We made the trek down to Texas for the conference, and I discovered for the very first time that there were lots of people who looked like me, both adults and kids alike! And they could do the most amazing things! And in the conference no one said once that something was wrong with them. Those conferences were a turning point in my life. I made many new friends, but most importantly, I finally knew that I wasn’t some fluke or a freak of nature. We went to many more conferences after that, and today they still run yearly, usually in a different state every year.

Since this post is long enough as it is, I’ll start to wrap it up here. But you can expect another post on childhood with a disability in the future! The point of this post was to kind of “humanize” my disability, and also show that knowledge is power. The more you know about something, the less intimidating it becomes. So go ahead! If you have questions, ask me! But otherwise don’t forget to share and follow my blog, and I’ll see you next time. Stay safe and stay well everyone!

References:www.amcsupport.org 

Who Are You Gracie Lou?

  Hello there sunshine and welcome to today’s post! 

For this week and before I get into other promised posts, I thought I’d introduce you to someone who has impacted and continues to impact my life in many special ways. She is more of an alter ego or a spirit within me, and through her I have found myself on some pretty crazy adventures. I’m kind of cheating here, because what you’re about to read I’ve actually had written for a couple years now... But if you want to get to know her, I can think of no better way than giving you this description. So I hope you enjoy! This is... Gracie Lou Whatwontshedo. 

My mother always taught me it was unladylike to swear. And yet, with the gradual whir of the helicopter rotors I went through every swear word I knew, and probably a few made up ones too. When one believes, whether founded in the truth or not, that death is too close for comfort, the mind tends to race as far away from reality as it can. She was with me then, whispering to dive far beyond my comfort zone. I don’t always want to listen to her, but in this case, I had no choice. I could risk being decapitated by the razor-sharp blades of the helicopter in trying to escape, or face my fears like the mature woman I pretended to be and stay strapped in my seat. Reality has the ability to make a fool out of the best of us though, because the very moment my winged transportation left the ground I forgot all my melodramatic absurdities. Like a phoenix rising to meet the sun, so was my soul breaking free from its bondage. I can only describe the feeling as taking a breath of life for the very first time. Acting like an adult being the farthest thing from my mind, I began to laugh and cry all at once, as if I was rediscovering my childhood innocence and wonder again. She was right, as is usually the case. 

I can honestly say that the excitement of the helicopter taking off is rivaled by the anticipation of it landing. The doors flew open, and myself and my companions carefully lowered ourselves into the waist deep snow of the mountain peak we had just been set upon. And then came the revelation… I found myself perched on the top of a mountain, whose mysteries were yet to be awakened. My heart was immediately overwhelmed by the visions of majestic beauty that were before me. Light has always been a fascination of mine, but when it is cast on snow of the purest whites, it seems to dance and sparkle like no earthly diamond could display. These blankets of snow were seemingly untouched by any living creature. It seemed as though we were in a different world, one where sorrows and hardships could not reach us. The peaceful quiet of this mountain haven is a sensation I to this day struggle to describe. If I were to try, the only conclusion I can make is that the sights and sounds must be as close to heaven as one can imagine. 

My musings were interrupted by the realization that it didn’t matter if I would be satisfied with just the helicopter ride and the view. She wouldn’t let me daydream all day, not when there were adventures to be had. I can remember heaving in deep breaths as I watched my guide float effortlessly through his first few turns. My heart began to thump, my chest tightened, and as I held in my final breath, I imagined the line I was going to choose. I had heard the term “powder eights” used in the skier world, and though in general I try to be a nonconformist, in this case I had to know what they felt like. Exhaling one final time, my courage rose up within me, and I dropped in for my first carve in the snow. From that point on I will always associate cutting in a new line on skis with having butterflies in the stomach. There is nothing more satisfying than carving into the untouched terrain before you. I had hoped that my first few turns would feel like floating on air or bouncing on fluffy clouds, and I was overjoyed to find that they were. Clouds of snow formed around me as I glided from side to side, tickling my cheeks and forming a smile on my lips. I found my rhythm with my guide, and echoed his movements in perfect harmony. And when we both stopped, unable to wipe the gigantic grins from our faces, we looked back on the magical figure eights we had just drawn in the snow. The helicopter glided over them as if to approve our artistic efforts. 

My ski partner, the man whose heart beats to the same rhythm as mine, gave out a light chuckle which only reflected what everyone was feeling. My body may not have left the sit ski which I was securely strapped into, my physical limitations may not have been altered, but my soul in that moment was truly freed. I had for as long as I could remember chased the feeling of freedom. I learned a great lesson that day, the value of which transcends simply skiing on a mountainside. My body may still be bound, but my heart and soul is free to have experiences without limits. My powder eights in the snow were proof enough that you don’t need an able body to experience life’s pleasures. Just an able mind and the tenacity to see it through. 

It was in that experience, one I will never forget as long as I live, that I really grew to appreciate her. All my life I had been told what I could and could not achieve. And yet, her voice was always there, beckoning me to a version of myself I could scarcely recognize. This is the magic of Gracie Lou Whatwontshedo. Who is this mythical creature whose influence challenges the souls of mere mortals like myself? To put it simply, Gracie Lou or whatever name is chosen to represent it, is the undeniable spirit we have within us. A spirit that tells us we can go beyond what is deemed impossible. It is the voice that calls us to be courageous, to be tenacious, to achieve our dreams and reach for the stars. In whatever circumstance, whether it be fighting a personal demon or finding the strength to be a pioneer, we all have the capacity to be exactly what we want to be. Though it took me a long time to recognize her presence, I have come to realize that Gracie Lou was apart of me all along. She is always there, daring me to find myself through the experiences I have. And so I continue to seek adventures beyond my limitations. With Gracie Lou in my heart, there really is no telling what I’ll do. 

Fourteen No More!

Well hello there sunshine and welcome to another post!

For today’s post I thought maybe I should introduce myself. Now I know I did an introduction when I started this blog, but that was also almost ten years ago, and I am no longer a socially awkward fourteen year old. I am now a socially awkward adult! Honestly I’m not the same person I was even a year ago, let alone almost a decade ago. Woah... a decade.... That makes me feel old... Anyways, let’s take some time to get reacquainted! Also if you’re new here, you’re probably wondering who the heck I am and why I’m taking up space on the internet... 

Hey there! I’m Grace Brulotte, I’m twenty three years old, and I was born and raised in heavenly Fernie British Columbia. I was born with two physical disabilities, both of which leave me wheelchair bound and reliant on caregivers. The first is a congenital birth defect called Arthrogryposis Multiplex Congenita (AMC), which is a big scary term that basically means stiff joints. From the neck down, all my joints have little to no flexibility. I also have basically no muscle and am not really able to gain muscle. Arthrogryposis isn’t progressive, meaning it doesn’t get worse over time (so they say). I’ll be doing a separate post on AMC later, so stick around for that! The second condition I have is Scoliosis, which is a curvature of the spine. And much easier to spell/say than my other condition... Scoliosis is unfortunately progressive, meaning every year the curve in my spine gets a little worse. My curvature is considered very severe, coming in at a shocking 95 degrees, and is deemed inoperable (too dangerous to fix via surgery). Another post will be coming later on about Scoliosis and my specific situation as well. 

Despite my physical disabilities, I still manage to have a pretty full life! I know, what.a crazy thought... Someone with severe limitations can have a full life! Honestly, since my Scoliosis diagnosis became so serious, I’ve began a new life motto of “accepting what is and letting go of what cannot be”. I enjoy challenging myself to try new things and reach new goals. I love anything outdoors, so in the summertime you’ll find me on long walks to my favourite scenic spots in Fernie. Becoming familiar with plants and trees is another outdoor activity I enjoy. I find it interesting to look up how things were used, either medicinally or practically. I’m able to be a lot more active in the summer, so I enjoy activities like paddle boarding, camping, swimming and of course road trips. The only time you’ll find me indoors is when it’s raining, and even then I tend to have a dance in the rain every now and then. Which is why my wheelchair technicians hate me... Being outside gets restricted for me in the winter unfortunately... The only real outside time I spend is when I’m sit skiing, which I’ve been doing since I was fourteen. I’ve skied every lift and every bowl at Fernie Alpine Resort, conquered blacks and double blacks, went cat skiing twice, and was the first female tandem sit skier to heliski in Canada. But more on all that later... When I’m not skiing, I enjoy reading good classic books, watching feel good movies, and of course writing. 

Let’s see... How would I describe my personality? A little shy at first I’d say. I’m not a huge fan of large crowds, and if I’m meeting new people I tend to be quite antsy. But once I warm up to someone, then all my quirks come out. I’m an enthusiastic and cheerful person 90% of the time. Although if I’m not doing well for whatever reason, people generally don’t know it because I’ll hide behind my well known smile and attitude. Only the people who know me intimately can tell the difference between my real smile and a fake smile. I generally love being social and being around people, but I also value my alone time when I get to go for a walk or listen to music. I’d say one of my greatest strengths, and potentially my greatest weakness as well, is that I care about others and love to help in any way I can. I have a passion for advocacy, and even though it scares me beyond all reason, I love public speaking. I have an addiction to buying cute teacups from thrift shops (or teapots), and literally have a whole cupboard dedicated to them. My rule is that I have to use a different cup every time, and then I feel totally justified in owning so many... I also have a chip addiction, to the point where I have another cupboard in my kitchen which is deemed “The Snack Cupboard”. I’ll buy pretty much anything if it’s purple or has something to do with unicorns. And my shelves are literally exploding with well loved books. Beyond all that, I’m a pretty dorky human being, who will sass attack anyone, and absolutely loves to laugh. 

As far as my professional life goes, I’m a very busy girl.... I manage not one, not two, but three nonprofit societies. For my paid job I am the Administrative Manager of an amazing organization called Elk Valley Hospice. I’ll be doing a post later on finding a job and being employed as a person with a disability, so stick around for that! For my volunteer work, I’ve been the President and Program Manager of FIRE Adaptive Snow Program for almost 10 years now, which I founded when I was just fourteen. My work with FIRE has earned me a national award for administration, I was recognized provincially as the Most Influential Woman in Business, and was the City of Fernie’s Youth Achievement Award winner. In 2019, I became the President and co-founder of the Gracie Lou Foundation, which focuses on inclusion and advocacy for people with disabilities. In June 2019, with the help of some amazing volunteers, we built purple portable ramps for 15 businesses in downtown Fernie, making them accessible for those with mobility challenges. It was such a fun kickstart project and will be followed by many more! 

There you have it! All acquainted with the adult version of Grace Brulotte... She’s fiercely independent, incredibly sassy, crazy busy, ready for a new challenge or adventure, and most importantly... Always smiling! Don’t you forget to smile today, and make sure you join me next time for another post on the Gracie Lou Perspective! 

Instagram - @gracielouwhatwontshedo 

Facebook - @gracielouwhatwontshedo

Email - gracielouwwsd@gmail.com

The Gracie Lou Foundation Facebook - @gracieloufoundation

FIRE Adaptive Snow Program Facebook - @fireadaptive

Where’d you go!?

Well hello there sunshine!

Where have you been!? Yes I know it’s been a while... It’s funny how life goes, isn’t it? You go through phases, you love something for a while and then you don’t, you’re motivated one minute and procrastinating the next, you’re passionate about something and then you move on. But then you come back! And when you do, you’re more fired up than ever! So I hereby solemnly swear that I will try harder to work on this blog, to potentially (I said potentially), bring you a somewhat interesting read every week, and attempt to not neglect said blog for oh.... A year or more. Or I’ll try my darnedest at the very least! And if I don’t then it’ll be like every other New Years resolution that fell by the wayside. Hmm, I never did buy that gym pass... 

Now... I’ve made a fundamental change to this blog, which you shouldn’t have failed to notice if you’re a veteran to it. The blog will no longer be called Disabled and Living in the Real World. Gasp! I know, shocking!! I do have a somewhat reasonable explanation for this... Firstly, since I’m attempting a fresh start with this blog, I figured it too needed a fresh start. While I will always love its previous name, I’m a little older now, a tiny bit wiser, and feel that the blog should be a reflection of where I am currently in life. Gracie Lou, whom I shall introduce you to in a forthcoming post, has become a huge part of my current life path. Not only is she an alter ego if you will, a public persona, she is also someone I strive to be when facing new challenges. But more on that later... This blog shall hereby be known as The Gracie Lou Perspective. Picture a beam of light shining down on the title, a choir singing, fireworks exploding, all that good stuff. 

So what can you expect from this new and hopefully improved blog? More narratives of the world as I see and experience it of course. But I’d also like this blog to be somewhat useful. Not just me telling you how hectic my life is on any given day. I refuse to have a “millennial” blog where all I do is talk about myself, repeat the word "like" after every second word, and post 20 pictures of the food I eat. That’s like totally 2019! So you can expect practical advice, real world experiences, reviews, potentially some interviews with other people, and much more. I hope to speak to those in the disability community, offer my experiences and hear theirs, be an advocate to the best of my abilities, shed light on the things that have been hidden, offer a different perspective, and hopefully redefine “disabled living” for society today. I know, way to set the bar high! But hey, go big or go home right!? ;) 

I hope you’ll join me as I attempt (if at first you don’t succeed, try till it pisses you off, swear a bunch, cry and yell and scream, and then for god’s sake try again) to not fail at blogging... again... You can subscribe on the right side by entering your email, and you’ll receive a notification when I make a post. And then you can marvel right along with me that I didn’t procrastinate and actually got it done. And don’t worry, a notification of a new post is all you’ll receive via email subscription. Also feel free to follow me on any of the social media outlets listed below. Don’t be a stranger! Let me know in the comments if there’s a blog subject you’d like me to address. 

Until next time, enjoy some pictures summarizing how much life I’ve neglected to capture on this blog.... Bad Gracie Lou! And hey, don’t forget to smile!

Instagram - @gracielouwhatwontshedo
Facebook - @gracielouwhatwontshedo
Email - gracielouwwsd@gmail.com
The Gracie Lou Foundation Facebook - @gracieloufoundation