2016.

This past year was probably the toughest year of my life. With my health posing lots of challenges, I had a lot of hurdles to overcome and mountains to climb. Yet, because of all of this, I learned so many beautiful lessons I would like to share with all of you.

I realized how much inner strength I have and grew into a better advocate for myself, a skill I’m still practicing and striving to improve every day. I learned how to use my voice productively and the importance of standing up for what I believe in. With that, I learned to trust my gut and that, considering I’m the only one who lives in my body, I best understand what is going on with it and it’s important to voice that.

I was taught lots of lesson about family; that it is not about who’s related to you by blood but rather who supports you, cares for you, has your back, brings positive energy into your life. I was shown that people can be disappointing and fallible but, despite that, there is so much kindness in the world; that so many people support me and love me. Also, I was shown that your vibe really does attract your tribe. The energy you put out into the universe attracts the same kind of people in return. I was shown just how amazing my tribe is and how, in times of hardship, we come together to lift each other up.

I realized that, though education is powerful and important, it is not the be all and end all; that it’s okay to not do school or put it on the back-burner and it doesn’t mean I’m falling behind in life. Equally, I realized that there are so many different ways to learn and grow beyond the classroom; that life presents you with tons of opportunities to do so and you just need to take advantage of them.

With some new and somewhat scary diagnosis’s, it finally clicked how short life is and that I need to take advantage of every good day to tick things off of my (realistic) bucket list by doing stuff that makes me happy. Equally, I realized that it is perfectly okay, and, in fact, healthy and normal to have some bad days where you just need to FEEL every emotion and let those waves hit the shore. I learned that, although life isn’t always fair, you have at least a bit of a say in the direction things go. Your mindset can make a difference.

I realized that my story, though full of pain and disappointed and losses, is powerful and beautiful and strong. Also, I realized that vulnerability and openness is terrifying yet brave and can have a much larger impact than you could ever imagine; that being open and honest with yourself and your emotions is just as important as sharing those with others. Fostering that helped me discover more and more bits and pieces of what makes me who I am.

I realized that worrying about the future doesn’t bring about anything productive and that the best way of moving forward is by taking things one hurdle at a time and not overanalyzing the leaps and bounds to come.

I learned that, through brokenness and struggle, comes an imaginable strength and discovered that, even in the toughest year of my life, the amount of beauty and love and smiles and joy within it is abundant, all I needed to do was look for it.

My wish for 2017 is that I continue to look for the beauty in every single day and to live every good day in the moment while respecting my body and it’s need for rest on the bad ones all while appreciating what it does to keep me alive. I’m not sad to see 2016 go but I’m grateful all the same, not for the hardships that it brought but the lessons they taught me and the growth it lead to. I strive to continue living life with intention and sharing kindness where I can.

Thank you to everyone who as been a part of my journey this year.

Slaying the dragon

 

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“You were so brave.”

That’s what the doctors told me after my feeding tube change done at the IWK Children’s Hospital in Halifax earlier this week.

After being briefed by the interventional radiologist who would be taking the lead in the procedure, we went in with expectations that it would be an easy switch. Most commonly, feeing tubes have interior bumpers that are collapsable or are made of a balloon filled with sterile water. Either of those types, you can make the bumper really small before taking the tube out, making the tube change procedure fairly easy and more uncomfortable rather than painful. We thought my feeding tube was one of those.

Once I was in the frigid procedure room in the Interventional Radiology department, laying on the table in only a hospital gown and a pair of comfy boots keeping my feet warm, the radiologist took a look at my tube using an X-Ray. That’s when he confirmed my worst fear: that my bumper wasn’t one of those you could collapse or deflate, it was a hard, solid disk. To get it out of me, he explained with compassion in his voice, this hard solid disk would have to come out through my stoma (the hole formed through my abdominal wall for the feeding tube).

I there laid on the table in the sterile room with wide eyes while the kind doctor explained this to me, feeling exposed and vulnerable. They hadn’t even started trying to take the tube out and the waterworks had already begun. I was beyond nervous and absolutely terrified. I knew the pain would be worse than I could ever imagine. I begged the doctor to use sedation, or to give me some pain medications or something to relax me, or to use a local anesthetic around the site. But they couldn’t do it. They weren’t prepared for a procedure where I would be put under, that would have involved an admission, so, once the surgeon arrived, it was time. We just had to do it. With tears in my eyes and a tremble in my voice, I gave them the go ahead.

The surgeon reassured me I’d be okay and then started pulling on the tube. It was quite possibly the most painful thing I’ve ever experienced. It took the him three tries to get it out; three agonizing yanks, three times of me yelling out in pain, screaming at the top of my lungs, three times of me gripping me the radiology technicians hand with all my might, my mom at my head, patting my hair, trying to help comfort me from the pain.

Between efforts number two and three, I heard the surgeon and the radiologist discussing quietly at the end of the table. They were trying to decide whether to just go for it or just give me sedation before they gave it another go, realizing how difficult it was to remove and how much pain it was causing me. However, they noted that it was almost out so, with a nod of my head, they went for it one last time.

The pulling started I felt my arms and legs go numb. I was ready to black out. The pain was too much. I felt a pulling sensation, then a pop, followed by a release. Then, there was the celebration. I felt the warmth blood and the surgeon applying lots of pressure to my previously irritated stoma. I heard my mom at my head saying excitedly “It’s out! It’s out!”. I cried even harder. The nurse and technician looked down over me with big smiles telling me the hard part was finally done. I survived. Relief washed over me, giving me a brief reprieve from the pain. The tube that had been my nemesis because of the discomfort it caused throughout the last year while simultaneously saving my life every single day was finally out.

The perky radiology technician held my hand while explaining and guiding me through each of the next steps of placing the new tube. The surgeon observed as the interventional radiologist finished up placing the new tube. Before heading off to his next surgery, he came up to me and told me in a genuine tone of voice that I did very well and that I was really brave throughout the whole thing. With my eyes still leaking out salty tears, I thanked him for the compliment. His words have stuck with me since then. Why? Because there was not one ounce of me that believed him.

When I picture bravery, I picture people doing valiant acts found only in medieval fairytales: the knights mounting there horses fearlessly riding out to slay the dragon and save the princess. I picture people working jobs where they put their life on the line everyday. I picture daredevils jumping out of planes and off cliffs. I picture those people you read about in the newspaper who saved a drowning child or rescued someone from a burning building.

No where in the definition of brave did I picture myself. I mean, I was crying before the painful part, before they even tried pulling the tube out, purely out of fear. Because of this experience, I’ve spent a lot of time reflecting on what it means to be brave. I realized since then that bravery isn’t the absence of fear. All the people I mentioned above were probably terrified too. Bravery is acknowledging that the thing you are doing is terrifying, letting yourself be afraid, but doing it anyways. It’s not the absence of fear but the choice to persevere regardless. It’s looking at the thing that scares you with tears in your eyes and a shaky voice and taking the plunge anyways.

This life I live, living with a chronic illness, is unique and it is fascinating. It can best be described in a never-ending series of dichotomies; it’s beautiful and painful, it’s bathed in light that’s often pierced by darkness, it is full of strength and lots of weakness, it is empowering and it is devastating, it is being fearful and being reassured, and, despite all the negatives, despite all the fear and all the worries, in the light and in the dark, it is full of bravery.

Waking up everyday and moving forward into the unknowns is bravery. Making big decisions about medications and procedures that could vastly impact your life in an unknown manner is bravery. Learning about bad test results and not letting them rule your life is bravery. Holding your head up high and marching forward despite all the misfortunes is bravery. Being absolutely terrified but taking that one step forward is bravery. Nodding your head “yes”, giving the go ahead in the face of fear, is bravery. Choosing to live this life full of pain and suffering because of the hope of better tomorrows, because of the beauty that protrudes through the darkness, because of the moments of laughter and smiles and joy, that is bravery.

This week, I slayed the dragon and rescued the princess. I pulled the person out from a burning building. I saved someone from drowning. Each of the scenarios represent me saving myself. I rescue myself everyday. I decide to keep moving forward, to advocate for myself, to find little bits of happiness in even the darkest days. My tomorrows are filled with more question marks then promises and I don’t know how long I have on this beautiful earth, none of us do, but I do know something: that even though tears flow from my eyes, even though my voice trembles, even though I am absolutely terrified, even though I’m not always fearless, I am always brave.

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Before and after. Long PEG-J tube VS mic-key GJ button

 

On Turning 20 & Decision Making

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I’ve had this sense of impending doom overhead for the last little bit. It first started out with my birthday last week. Last years birthday wasn’t so great. I had just been discharged from the most mentally, physically, and spiritually draining hospital stay. Needless to say, I didn’t have the energy nor necessarily the desire to celebrate. I ended up laying in bed marathoning Grey’s Anatomy all day. What a stark contrast to my birthday the previous year at MUN.

This year, I had a great birthday. My sister came home for the weekend and it was great to see her. My parents surprised me with some neat balloons that were very fun to take photos with and a beautiful bouquet of sunflowers. My grandparents came over for the afternoon and we sat around and chatted. I opened my gifts and my sister so thoughtfully brought me out a birthday candle so, even though this year’s celebration was cake-less, I could still make a birthday wish.

I had been dreading turning 20 because it was leaving my teenage years behind and, the last two of those years, are ones I wish so desperately that I could redo all over again. To me, turning 20 just signified another year wasted, of falling behind. But, my loving family helped me realize it was more than that. It also signified another year that I was successful at staying on planet earth. Another year that modern medicine so graciously kept my malfunctioning body going. Another year where, despite having many hardships, I got to lay back and look at the stars, to revel in my blessings. Another year of life. Ultimately, I think that is the most important part.

Despite feeling relief from my birthday related impending sense of doom, there’s been more issues appearing that are reigniting those feelings. I’m faced with some big decisions regarding my health that I just don’t know how to make. Being as analytical as I am, I like to gather all the information I need. Then, I usually just try to trust my gut and hear what it’s telling me. Right now, I’m not getting any clear answers.

The only thing my gut is telling me right now is to run, to escape. To head back over to Newfoundland where I have so many great friends and even greater memories. To hop in a car without a map and drive until I can’t go any further. To go and chase the sunset. To travel somewhere to spend a while basking in the sun on a beach where the sand is white and the blue water is crystal clear; listening to the big waves hitting the unsuspecting shore. To go to my favorite place spot that always made me happy.

Don’t get me wrong, this is not because I’m unhappy where I am or am depressed, I’m not. The problem is, I’m unhappy with my situation concerning my health and I really just don’t know how to fix it and would much rather run away from it instead. Escaping tends to be my go-to desire for dealing with tough times but I know it just isn’t feasible. As tempting as it is, I know that running away from all my problems most definitely won’t fix them. My health problems are part of me so there’s no leaving them behind.

Instead, I’m going to pray that He leads me on the right path; that He points me in the right direction and guides in my decision making. I’m going to live mindfully and enjoy the endless little happy things that are permeating the darkness in the meantime. I’m going to distract myself by doing things I enjoy to keep my hands busy and my heart happy. I’m going to work hard on advocating for myself and standing up for what I believe is fair and just treatment. And then I’m going to hope that the right path is shown to me in some way. No pressure, no timelines, just faith.

They always say that tough times don’t last, tough people do but, occasionally, a tough person needs to be weak for a while too. I feel as though I’ve exhausted all my reserves of “tough”. Now it’s time to just be for a while, to recharge, and then to come back swinging.

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Gastroparesis: The Basics

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Picture the worst stomach flu you’ve ever had. Imagine the nausea, how awful you felt, how you couldn’t keep any food down. Now, imagine that feeling never ever went way. You thought you just had a flu but you never got better. That’s what it’s like living with gastroparesis.

Out of the handful of diagnoses I’ve received, this bad-boy is probably the most frustrating one. It affects your digestive tract, making it hard to eating. Eating and nutrition is a huge part of life, both socially and physically so, having an illness that affects that, is most definitely life changing.

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That big blob on the upper right hand side is a beautiful gastroparesis stomach holding onto stuff and swelling to 4 times it’s size

August is gastroparesis awareness month so I want to do my part and spread a little knowledge about this green monster. First off, I think it’s important to understand the basics so here we go!

What is gastroparesis?

The name literally translates to paralyzed stomach. Commonly, people’s stomach aren’t completely paralyzed (usually they’ll classify that as Digestive Tract Failure) but they empty much slower than normal, taking hours or days longer than those with a normal gastric emptying. That means that, rather than food moving out of your stomach completely in about 4 hours, the food sits and festers there much longer which makes you feel pretty awful! Gastroparesis can sometimes be thought of more as a symptom than an illness, indicating there is something else going on (like in my case, EDS). In some cases, gastroparesis is the illness.

What causes gastroparesis?

There’s so many different causes! Diabetes is the most common. After that, the second most common cause is “idiopathic” which translates to: your stomach doesn’t work and we don’t know why. It can also be post-surgical or post-viral or caused by a medication. Within the long list of causes is also a ton of auto-immune diseases (like lupus), genetic conditions (like mitochondrial disease), connective tissue disorders (like Ehlers-Danlos Syndrome), and forms of dysautonomia (like Postural Orthostatic Tachycardia Syndrome) that can cause gastroparesis. This list seems to be growing continually as they find more conditions that are co-morbid (meaning they occur together) with gastroparesis.

How does gastroparesis make you feel?

So. much. nausea. That is probably the worst and most persistent symptom I have. It can also cause vomiting, weight loss or gain, malnutrition, and stomach pain among other things. Like any illness, it affects everyone differently, but these are what people most commonly experience. For me, it’s taken away my ability to eat without feeling absolutely awful. It also affects my bowels which leads to some other fun issues!

How do they test for it?

The golden standard is the Gastric Emptying Study. Essentially, what you need to do is eat food with some radioactive tracers and they scan your stomach every so often for 90 minutes to 4 hours, depending on the test, to see how quickly the food empties into your small bowel. Sometimes, it can be diagnosed through an endoscopy if they find leftover food in your stomach after fasting for the scope, though typically they do a GES to confirm. A new technology that some are using now is the smart pill capsule endoscopy; you swallow a small camera that goes all through you digestive tract!

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Unfortunately no, and there is only a handful of drugs that can be used to help treat it. For some people with post-viral gastroparesis, it can, however, get better and even resolve itself over time. There’s two different types of medication used for GP: pro-kinetics (that are supposed to help speed up your emptying time) and anti-emetics (that are to help nausea and vomiting). In the pro-kinetic class, there’s really only 2 different kinds, both with serious potential side effects. Awesome! If the medications don’t work and you still can’t eat enough, that’s when they consider a feeding tube or a gastric stimulator. Sadly, even the stimulator isn’t a cure as the success rate isn’t very great and, for those who find relief from it, it only helps their nausea and vomiting, it doesn’t help them eat.

The Benefit

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Thursday, the day of the benefit, started out as a not-so-good day. On Wednesday, I had an appointment at the hospital which always take a long time and wipe me out. Not to mention, my hips were dislocating left, right, and centre so I was pretty sore after that excursion. When I woke up the next Thursday, after a night of interrupted sleep, I was in pain and tired and nauseous. Overall, let’s be honest here, I was not in the mood to be human that day.

I tried all my usual tactics to try and ease my symptom: pain medication, nausea medication, taking a nap, meditating, but none of these seemed to do the trick. However, I was determined to get to the event. The tickets had sold out so I knew there’d be a lot of people so I needed to be there to show my gratitude. With the help of my mom and sister, I got all dressed up, they did my hair and makeup, and off we went!

The event was so beautiful and overwhelming in the best way possible. When I rolled in, I was shocked by what I saw. There was so many people! I knew that we sold out but it was much more than I was expecting. So many people took the time out of their evening to come offer their support. It was awesome. Everyone seemed to really be enjoying themselves. From the silent auction, to the photo booth, to just chit-chatting, the guests seemed to have a great time. I was so disappointed that, with so many people being there, I didn’t have the chance to speak to nearly everyone! I so wanted to say “hi” and thank everyone individually for coming.

After about two hours of everyone hanging out, it was time for the evening to come to an end. John and Christine called my family up onto the stage and presented us with the cheque telling us the grand total of the night. When I saw the number, I was absolutely floored. I never expected to have received that much money but, even more importantly, I never expected there to be so many people who wanted to come out and support me. I was (and still am overwhelmed) by all the love and generosity that could be felt in Lily Lake Pavillion that night.

I had written a speech for the event but wasn’t sure whether I would do it since I really wasn’t feeling great. In the end, I was so overcome by gratitude that I had to say thank you. I’m pleased to report that, as I intended, there weren’t very many dry eyes in the room, including my own! It was just such a special night.

For all those of you I didn’t get to speak to and thank already, I just wanted to say a huge thank you. To those I’ve already thanked, I want to say thank you again. There is no words to express how grateful I am for all of you. I really just can’t say thank you enough. It was beautiful seeing the community come together to support me in my battle. Saint John surely is an amazingly caring city.

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A Letter to my Village

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I’d never understood the old adage “it takes a village”. I’ve always been a pretty independent person; happy to be in the company of others but equally happy to spend time on my own. Lately, I have come to have a much greater understanding of what that saying means.

As most of you know, nearly two years ago now, I left to study at Memorial University in St. John’s, Newfoundland, and, not long after that, I got sick and never got better. Initially, it was hard not having my parents there with me. No matter how old you are, there’s nothing better than a mothers care while you’re sick. But, lucky for me, my great group of friends stepped up to the plate. They’d offer to run to the drug store for me if I needed anything. They’d bring me bagels from dining hall. They’d pick me up from doctors appointments. They’d spend their Friday nights watching movies with me instead of partying. Everyday, they taught me what a true friendship really is.

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Part of my Newfoundland “village”

Soon enough, I had this amazing support system surrounding me. It crazy how we went from being complete strangers at the beginning of the year to feeling like we knew each other forever in just a few short months. I found a village and it felt great. I knew that, no matter what, these people would have my back and still, to this day, they are some of my biggest cheerleaders. But then, the school year ended and my village was ripped apart, all of us going back to our homes thousands of miles away from each other.

For awhile, I was somewhat afraid. I thought I had lost my village when I came home. Fighting a battle with an invisible illness can feel very isolating at times. It can feel like nobody understands what you’re going through because you really don’t understand having an illness that never goes away until you experience it for yourself. And what made it worst was the fact I no longer had my great support system I had built at MUN by my side. It didn’t take long though for me to realize that I had a village right here at home all along.

I knew that my family and friends were part of the village but, the more I talked about my battle, the more I realized how many people were behind me, supporting me along the way. My village is full of a menagerie of people: from the hundreds of people who have shared my several “call-to-action” posts on Facebook, to the fabulous nurses and doctors who have joined my team, to the family I found during my years at JVK Taekwondo, à la communauté francophone qui m’a accueilli à bras ouverts quand j’ai décidé de poursuivre mon education en français, to my fellow EDS and chronic illness fighters I’ve met through the blogging community, to the John, Angela, Christine, and the rest of the team at Credit Counselling Service who so graciously planned this benefit for me. My village is huge.

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Feeling the love from my “village”

People often commend me for my strength or my bravery or my positive outlook through all of this and I often hesitate accepting those compliments. Why? Because you all deserve them too. Without all of you, without my village, I couldn’t have made it through all I have and continued on this fight. Without your support, kindness, and friendship, I would’ve been hard pressed to keep my positive outlook. I realize now that it does take a village. You all have been my strength when I couldn’t be strong, my bravery when I couldn’t be brave, and my positivity when I couldn’t see the light at the end of the tunnel. I am so lucky and so humbled to have such an enormous village but, most importantly, as shown yesterday, a village full of love.

Thank you for being my village.

(N.B. This is the extended version of my little thank you speech that I gave at the benefit organized for me on June 28, 2016)

Finding my Voice

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In February of this year, I started getting nightly infusions of saline through a PICC line. As we all know, hydration is a big part of health and nutrition and, due to my limited intake caused by gastroparesis, I wasn’t getting nearly the amount of fluids necessary to stay hydrated. Fluid consumption also plays a huge part in controlling my Postural Orthostatic Tachycardia Syndrome. Without these fluids, I faint multiple times a day which is both extremely inconvenient but also dangerous to injure myself, especially with my bad joints from Ehlers-Danlos Syndrome.

When my nurse came from the Extramural Health Program to bring my weekly supplies and do my dressing change nearly 2 weeks ago now, I was told that they wouldn’t be caring for me any longer since I no longer met the requirements for their at home care. We weren’t necessarily surprised since my nurse had casually broached the topic a few times since Medavie-Blue Cross came into the picture. However, we were, nonetheless, still upset and panicked. The two options given for continuing infusions were to either pay for them out of pocket which is a huge expense or go to the IV day hospital every single day. Neither of these were good options.

That day, I shared my feelings on Facebook and my post started to circulate around. I was contacted by several media outlets wanting me to speak about what was happening but I hesitated. I wanted to make sure we had exhausted every option first. Thankfully, my mom called extramural the next day and spoke to the manager who cleared things up. She reassured us that I would not be abandoned and that they should have broached the subject differently. We weren’t guaranteed that they would continue providing forever but they weren’t leaving us high and dry as we were told. Since then, we have come to find out that a few people with some pull had made some calls that helped solve this issue for which I am very grateful.

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Me with Ed Hunter and Catherine Harrop from CBC

Despite having the issue with extramural cleared up, a couple of these media outlets still wanted to talk to me; not necessarily about my care from extramural but just about my story, my experience of being a patient with a disease that’s not very common nor well understood. To be honest, my initial reaction was to tell them no. I was afraid to put myself out there so publicly. Sure, I do write a blog that’s public but this was different. I wouldn’t be in control of what was written or said and I was afraid to have my thoughts misconstrued or misunderstood. After talking it out with my good friend Hannah and my parents, I came around to the idea and decided to go for it.

My first interview was easy; short and sweet. It was with the Telegraph-Journal. The journalist just came to my house and we sat and chatted for a bit. The next day, the article was published and I was happy how it came out. I’m glad I did an interview for print first since there was less pressure seeing as I wasn’t in front of the camera.

A few days later, a journalist and videographer came down from the CBC in Fredericton to film with me for the morning. It was a really neat experience! Before we started filming, Ed, the videographer, set up the lighting and such in my room while I chatted with Catherine, the journalist, which gave me a pretty good idea of the questions she’d be asking on film. After the set-up was done, we filmed the interview portion which took about a half hour. I was very nervous but I had no reason to be! Catherine and Ed made me feel so comfortable in front of the camera.

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(Photo courtesy of Catherine Harrop)

When we finished the interview, we spent about another half hour filming clips of me doing random stuff I enjoy doing on a day-to-day basis: crocheting, watching Grey’s Anatomy on Netflix, looking at my Warrior Beads, etc. We also got clips of my mom and I putting my feeding pump on my IV pole and hooking it up, some clips of what living with EDS looks like. Then, Catherine and Ed interviewed and filmed with my mom.

The whole process took a bit over 2 hours to put together the 3 minute clip that played on the news that evening. The amount of work that goes into producing a news broadcast absolutely floored me! But, it was totally worth it because I was very pleased with how it turned out. I think that they captured my thoughts and my life well.  They ended up playing a bigger portion of my interview on the CBC radio the next morning and also ran an article on their website.

The response to my articles has been better than I could have ever imagined. I’ve had several people from the maritimes with EDS reach out to me, some of whom have never met anyone with their condition, even through the internet! I’ve also had my interview shared around Facebook quite a bit by a lot of people, including the Ehlers-Danlos Society, which I think is just about the coolest thing ever. More and more people having been finding my blog and other social media which will hopefully help grow awareness for EDS. 

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Ed Hunter from CBC and myself (photo courtesy of Catherine Harrop)

All in all, what changed my mind about sharing my story is that some people in my situation aren’t lucky enough to have a voice or a platform on which to share it. I am one of the lucky ones who do. Ultimately, I didn’t share my story for myself (in fact, I hate being the centre of attention which is part of the reason I hesitated so much) but for others who haven’t been able to share theirs. I think that, as a patient with a rare disease, if I want change to happen, if I want awareness to happen, I need to make it happen, I need to be the change. It took a lot of courage and a bucket-full of bravery but I am glad I did it. Some of the best things definitely come when you step out of your comfort zone.

 

 

Being is Enough

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There’s a unique monotony to chronic illness. You wake up, pray your pain is miraculously gone. It’s not. You shovel pills down your throat, more than you can count. You pray they work. They don’t. You move through your day following a not-so-elegant dance routine, going through the steps, trying to make it until bedtime. If you’re lucky, sleep comes easy and gives you a few hours, never enough hours, of relief that only escaping to another state of consciousness can do. If you’re unlucky, the very thing you’re trying to escape is what has you shackled down to this world. You can’t disappear. You lay there, staring at the ceiling fan as it spins and spins, waiting for the light of day to pierce through the slats of the drawn-down window blinds. Then, you start all over again.

Wash, rinse, repeat.

You get stuck in this routine. It slowly becomes like a dark shadow over your life, a constant companion. It represents all that this illness has taken away. It has tried take away all that you are. You can’t be a student. You can’t be an artist. You can’t work. You don’t feel like a productive member of society. You feel like nothing more than a drain, a burden. You can’t label yourself with what you do anymore. You just exist.

You just exist and you watch. You watch through a window. You watch your friends, your family members, accomplishing goals. You watch them advancing in their careers. You watch them starting families. You watch them ticking off countless items listed on your long abandoned, now dusty and untouched, bucket list. You watch them grow up, move on. You watch them becoming labels, defined by what they do. They are leaders. They are academics. They are doctors. They are teachers. You wish you could do that too.

With passing time and accumulated courage, you decide to make a change. You step out shyly from the shadows, telling yourself it’ll only be for a minute. You want a taste, a sliver, of what these companionless people experience. Despite continually looking on from your place in the shadows, it’s like the whole world has changed since you’ve last walked in the sunshine. The air feels fresher. The light feels warmer. The blues look bluer and the greens, greener. The birds chirping and the wind blowing, the kids playing and the animals roaming, they’ve all gained a certain other world musicality providing the perfect soundtrack to your life.

You feel the grass, soft under your feet; nature’s homegrown carpeting. You venture over to a garden in full bloom, displaying a whole rainbow of unbelievable colours. You pick a petal off the most vibrant flower you can find. You close your eyes as you rub it between your fingers, memorizing the feeling of its velvety smooth surface unlike anything you’ve ever felt before. As a gust of wind blows, you are overcome by the sweet smell of the flower’s nectar. You don’t like perfume, man-made smells, but you like it’s scent.

You inhale deeply, filling your lungs to they highest capacity, and exhale slowly until you’ve expelled every last molecule of air. The shadows start calling your name, beckoning you back to the place you have dwelled for so long. You realize, after stepping out into the sun, there’s no need to go back. In order to live in the light, you don’t need to be doing, you don’t need to be labeling. Experiencing is enough, breathing is enough, existing is enough, being is enough.

You are enough.

At birth you are given the most important gift, that of being a vastly unique human being. There’s not one human living the same experience as you. Whether your human experience is full of accomplishments or none at all, whether it’s full of titles or none at all, whether you’re admired by many or only one, it is enough. Once you choose to embrace this gift, no illness, no shadow, no darkness, can take away the light. The light isn’t the sun or the stars, it’s you.

You are not destined to live in the shadows. You are not destined to watch passively as others live. All you need to do is be.  Channel your bravery. Take a deep breathe, take the step out, and soak up the sun because that is where you’re meant to be.

Making the Most of Grad Week

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After receiving my first Xolair injection about a month ago, I’ve been feeling pretty off. Actually, let’s be honest here. I’ve been feeling awful. The day of the injection, I developed a headache, followed shortly by an earache and body pain, then proceeded by a crazy amount of nausea. I’m pretty used to living with a certain level of discomfort but these symptoms have basically left me bed bound, only leaving the house once between the time of the injection and the beginning of graduation week. We ended up speaking with my immunologist and she advised me to discontinue the shot. At my next appointment, we will try and figure out a new plan of action.

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My friend Hannah and I at Public Gardens, the park where everyone goes to take prom photos

Despite feeling pretty under the weather, I was determined to make it to my sister’s graduation events. It’s a once in a lifetime thing and I wanted to be there to celebrate her hard work and accomplishments. Even before the Xolair fiasco, my mom had been suggesting that we rent a wheelchair for me to use during the festivities. I really didn’t want to. Honestly, I was embarrassed to be seeing all my teachers, friends, and people from my grad class in such a state. But, with the sharp decline in my health, I had no choice but to oblige. It was either I go using a wheelchair or don’t go at all. So, we rented a light weight wheelchair from shoppers for the week.

Prom day with the wheelchair went off without a hitch! The park was definitely not the most accessible place I’ve ever been. There was a huge hill going down into the park and, had I been on my own, I couldn’t have managed to get down it without rolling down uncontrollably. It took both my parents holding onto the handles of the chair to prevent me from ploughing over everyone. Once down the hill, things were a bit easier since there was a paved pathway throughout the park. My good friend Hannah was brave enough to attempt to bring me off-roading to where they were taking some of the pictures. It was a rough ride but, needless to say, we both got lots of laughs out of it and Hannah got a good work out! On our way out of the park, things were a bit tough; mainly because of the crazy steep hill and because of the fact someone had parked in front of the ramp from the sidewalk into the parking lot. Not cool.

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Emma and I

I really enjoyed getting to catch up with everyone from high school. We’re a very tight-knit community and people are so caring and supportive of myself and my situation. It was definitely the moral boost I needed after a tough month. However, I had to pay the price for that excursion. The next day, I woke up in excruciating pain. Thankfully, after trying several over-the-counter pain relievers, my family doctor called in a pain medication for me to help make it through the week. With that on board, I was able to make it to the graduation ceremony that Saturday. It was special to get to see my sister getting her diploma after so many years of hard week. After the ceremony, we went outside the front of the school to take some family photos and so my sister could take some photos with her friends. I decided to use the wheelchair again because all that walking would’ve been too hard on my body.

Using a wheelchair for the first time in public definitely made me reflect on two things I’ve learned over the past (almost) two years of living with chronic illness. The first is that you should never let the fear of what other people may think stop you from doing things. If you do, you’re the only one being punished, you’re the one missing out. I only have so many good days that punctuate the strings of bad ones and I need to live them to the fullest. If I need a handicap parking pass or a cane or a wheelchair to do it, so be it. Sure, I did notice a lot of people staring and got quite a few looks that can only be described as “the cancer eyes” (the look people give when they find out someone has cancer) but I also got lots of friendly smiles, great conversations, and people who treated me like me, not just some sick girl in a chair. I almost let the fear of using a wheelchair stop me from going but I’m glad I didn’t.

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My mom and I after the graduation

The other thing I’ve learned is that, when dealing with a limited energy source, it’s important to pace yourself and prioritize. Participating in grad week was something important to me. Was I able to participate in everything? No I wasn’t but I compromised. Rather than go to prom photos and the grand march, I just went to the photos because I knew it would take me longer to recover if I went to both than if I just went to one. Rather than go to the mass at the church before graduation and the graduation itself, I just went to the graduation ceremony. It can be hard not to beat myself up over this because, two years ago, I would have easily been able to do it all. In fact, I did do it all and more since it was my own high school graduation! However, I’m opting to celebrate the small victory of being able to participate in some rather than be mad I couldn’t participate in all.

A Letter to the Grad Class of 2016

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Dear new graduate,

Only two short years ago, I was in your place. I vividly remember the bittersweet feeling of the occasion; the excitement for things to come, the butterflies in your stomach as you walk across the stage to collect that diploma your worked hard for years to achieve, the pride of being recognized for your achievements, the sadness of parting with your friends. It’s a time of celebration and a time of grieving. It’s a time of change. Ready or not, here comes the next big step in your life.

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In the dressing room before the graduation ceremony

The last 13 years of your life have revolved around education. You woke up early to catch the bus, spent a long day in classes learning, did your homework, played some sports, went to bed, and then repeated it all the next day. These years were spent learning and practicing and growing up; they were spent becoming. You were becoming you, becoming an adult, preparing for the next chapter. Now it’s here. You’ve spent your whole life preparing, now it’s time to start living.

Whether you’re going to university or college or directly into the work force, these next few years have the potential of being your best yet. You’re now free. You’re an adult. You’re independent. You get to call the shots. You get to choose which direction you go next. Luckily, in addition to all this, the expectations are also lower than those put on more adultier adults. You’re not expected to have things figured out yet, nobody does. Grab the bull by the horns and take advantage of this.

You will be presented with countless opportunities, things you would’ve never even fathomed. If it seems interesting, say yes. If it scares you in a good way, say yes. If it challenges you, say yes. Get involved. Make your mark. Don’t be afraid of going outside your comfort zone and trying new things, it may be the best thing you ever did. When I was appointed to charity representative in my residence’s activity planning committee, I was so nervous! I had never held a position like that before. But, as the year went on, I became more and more comfortable with the job. I met new people and had lots of new experiences. I took a big risk but some of the most memorable moments from my first year were made because of that risk.

Since there is no fool-proof roadmap to how to live life successfully, you will most likely feel lost for a short (or long) while and that’s okay. You don’t need to know where you’re going just yet. It can be difficult because you’re going to meet all these people of the same age who seem to have their life put together perfectly but I’ll let you in on a little secret: they don’t. Chances are, someone is thinking the same thing about you. We all seem to think everyone has things figured out when we don’t. Use this to form bonds. Lean on each other. Embrace your community. Nobody will be judging you because you’re all in the exact same boat.

If you’re anything like me, you have probably tried your best to make a roadmap for the coming years and that’s great. I like planning and trying to know where I am going. But, don’t treat your plan like it’s a dictator over your life. You can vary from the plan and don’t worry about what other people will think if you do. This is your life. Focus on yourself. If you’re not happy, make a change. If you’re presented with a new, valuable, opportunity, take it. Plan but plan loosely.

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The awkward moment when you and your friend show up to class in the exact same outfit

These years are going to be stressful and sometimes overwhelming but they will also be fun and enlightening. You will most likely grow into a new person. That’s okay, that’s what this time is for. You’re going to realize who you truly are, what you truly value, what your priorities are. Give yourself room to grow and don’t resist it. Growth and change can be hard for some people and, if it’s hard for you, don’t be afraid to ask for help. There will always be someone to help you through it.

Lastly, live every single day to the fullest of it’s potential. Smile lots. Laugh often. Learn. Have an open mind. Don’t get caught up in the miniscule petty details. Because life is so unpredictable, anything can happen. I didn’t expect for my life to change suddenly like it did. I’m so grateful that I spent everyday of my first year post-graduation living it to the max. I made memories in my first year that will last a lifetime. I hope you do too.

Love,

Kathleen