Halloween - Hospital Style!

Happy Halloween. This year I'm doing something different for Halloween. I've been in the hospital for the majority of the past month, having spent a week at home before being readmitted. When I found out that I was likely going to miss Halloween outside of the hospital, it kind of bummed me out. 

Thankfully the hospital thinks of that important part of growing up and tries to make it as normal a day as possible so that kids don't have to completely miss out on marking the holiday.

So how does a large hospital like Sick Kids celebrate Halloween?

Spooktacularly of course!

Thanks to a lot of organizations and companies, Sick Kids transformed from being a place to treat my illnesses to being a Halloween Festival, complete with costumes for the kids, super-heroes and Paw Patrol Dogs, make-up artists and non-food based goodies. It meant so much to be able to go around the hospital from station to station and feel that you haven't completely missed out on what is an important part of growing up for a lot of the kids that come here for treatments. It was great to see all the other kids in their costumes and so excited to participate in something so special. 

A special shout-out to Yvonne Hamelin & friends, who have made hand-made trick-or-treat bags for all of us to let us know that we're not alone. A reminder that we all need at times.

Thanks everyone for making the day so special for us all!

 

Welcome To My (Mostly) Great Life!

On my way to the OR again

I mean every word of that title. Welcome to my great life. My wonderfully complicated, most of the time crazy awkward, some of the time confusing and mysterious, but otherwise mostly great life!

There seems to be a recurring theme to my life - individuals who assume that because I have a chronic illness, undergo frequent medical procedures, and live with daily symptoms inspired by my illnesses, that I must be depressed and anxious, and if not I must be suppressing it.

I have a VERY important message for these people: Please stop trying to label me. Please stop trying to assume you know how I feel about my life given my medical conditions based upon "how others feel". I am my own unique person. I have my own unique feelings. How I cope with the cards I have been dealt is in my own unique way. If you only know my medical file, then you only know what events I have experienced, but you don't know how those experiences have left me feeling without actually asking that question.  

More hospital time

I completely understand what the doctors (and everyone else) are thinking here: In the last 5 years, I've had 17 trips to the Operating Room for my Crohn's Disease; have been poked, prodded and otherwise tested more than I can possibly count; endured long, boring days receiving treatments and then put up with the side effects of those treatments; missed holidays, birthdays, social events; have been a patient in most areas of the hospital at some point; lived with a Naso-Gastric Feeding Tube for months, and now a G-Tube Feeding Tube (which I'm allergic to) and now have gained a wheelchair...yes, I can see where on paper people might come to the opinion that I might be suffering from depression from this all. Which is a very real problem for a lot of people living with similar issues. I can get how 5 years of dealing with the unknown, the frustrating, and the symptoms of any chronic illness is depressing. It's just not how I see myself. 

Yes, I'm sick. Yes, I'm in daily pain. Yes, at times my illness does impact my life. Of course it does. It impacts my life because it's a part of my life. Just as it would be really wrong to tell an amputee that their amputation doesn't impact their daily life, it's wrong to assume that a chronic illness wouldn't impact on someone's daily life. That's what illness does, it changes us. It's changed me. It's made me realize a lot about myself, and I'm constantly learning even more about who I am as we go. It's made me both thankful for the time that I do have here, aware of it's value, and how I can use that time to make this world a better place. 

My illness has definitely changed me and it's something that I'm proud of. I have this single life to live and I get to choose how I want to live it. 

One of the most basic life questions is: What type of life would you like to have? 

My favourite therapy clown

Okay, I'm betting that you said that you would life to have a happy life. I think if you told someone you wanted an unhappy life, they'd likely recommend a good therapist, with great reason. So, I want a happy life. What makes me happiest, brings joy to my days, is making a difference in the lives of others. Honestly. I 100% love to make a difference. That's why I started Jacob's Healing Rooms, why I sit on the Sick Kids Children's Advisory Council and why I'm presenting at this year's Patient 2 Patient Education Project though the University of Michigan's IBD program. It's why I jump at any opportunity to speak publicly about my experiences. My passion is in making this world better for us all. This gives me something to focus on. It creates something beautiful from all the nasty that I've endured. It lifts me on my down days. Helping is how I cope, and helping others helps me in turn. It's a beautiful relationship. 

So when someone says that I must be sad, depressed, anxious and angry it makes me sit up and say "huh?". I don't see myself as any of those, at least on a day-to-day basis. All of us have those negative feelings, in fact, it would be impossible to feel happy without also having it's opposite, sadness, to compare it against. But my negative feelings are about difficult situations; like being overwhelmed with the amount of homework in a day, or being frustrated when a doctor doesn't take the time to listen. Completely normal reactions to the situations I'd say. 

With friends at the Oshawa Terry Fox Run

Yet when I think about just my health problems in the general context of my life, I'm pretty happy.
And pretty lucky. My health is stable enough that with my mom's newfound nursing skills, using my GTube for hydration and my wheelchair to cope with the pain and fatigue, I am able to live life on the outside of the hospital. Many kids don't get to see the outside for months at a time. I get to enjoy different events like seeing Bruno Mars, throwing fundraisers, and going out playing Pokemon Go. I have opportunities to just live as close to normally as possible. I get to wake up each day and dream of new ways of making this world a better place. Since the future is unknown, I believe in the hope of a future that brings new and great things. I believe that I can and will make a difference. And all of that makes me pretty happy. 

I close with something my mom always tells me: We all have challenges in this life. It is how we rise to meet those challenges that truly tells us who we are at our core. 

How Video-Games Help With My Chronic Illness

Video-games. Like them or hate them, they are a big part of our world today. Phone Apps, Console Games, and the good old classic, computer games, play a huge role in our culture. They also play a huge role in my life, especially as a chronically ill child.

Due to my illnesses and their many complications, I haven't had the most typical of childhoods. From the time I was 8, I spent the majority of my days either at the hospital, a doctor's waiting room, or at home, hoping the latest treatment would work so that I could get back to my old life again. I had no idea when I was first starting out at the hospital that there wouldn't be any going back to my old life. For example, I had to stop going to Cub Scouts as I couldn't make it to any of the meetings or keep up with them physically in their activities. My social life at school was utterly destroyed because it's hard to build and maintain friendships during your first year at a new school without actually being there to do that. My opportunities for meeting people my own age were quickly circling the drain. 

Enter gaming. Playing video-games has given me the chance to increase my opportunities for social interaction when I can't leave the house or leave my hospital room (I tend to spend a lot of time in isolation rooms at the hospital), as well as at the hospital itself. I had started playing MineCraft right before I was diagnosed with Crohn's Disease at the end of grade 3, but was never really big into it or other games until I was hospitalized. I had quickly learned that MineCraft wasn't just a solitary building game, it was a way of interacting with others and having something in common with them. I could walk into Marnie's Lounge (a patient play room at Sick Kids Hospital) and quickly make friends just by talking all things MineCraft related. 

And MineCraft wasn't the only game that brought us together. There were many a night when we would have very competitive Mario Kart racing with everyone in the room watching and cheering the players on. Super Smash Brothers became a way of releasing our frustration with our illness and the treatments by pretending that the characters we were battling was some aspect of the illness. Even traditional board games helped to bring us patients together. Video-games help give us a chance to just be a normal kid. 

For life outside the hospital, video-games has also been helpful. I've used them to distract me from my pain and other harsh realities of my day-to-day life. For instance, I love Pokemon, so when the game Pokemon Go came out, I was naturally super-excited. But even better than just playing the game on my own to collect all the Pokemon in the wild, the game now features something called Raid battles, where players get together to battle a Pokemon in a huge group in hopes of getting a chance to catch that Pokemon. I've been able to get out to some of these Raid battles over the summer and it's been awesome. I've been able to meet so many other people and form friendships with a lot of them. I've always felt accepted with the other players, in fact, they go out of their way to help me. They offer to push my wheelchair for me, they wait for me to arrive at these Raid battles so that I can be included too. Gaming has brought people into my life who I never would have otherwise met, and had the added benefit of increasing my support network. 

For my Jacob's Healing Rooms Project at Sick Kids Hospital, I wanted to include some form of fun and distraction from spending an entire day receiving outpatient IV treatments. Knowing that the right environment can have a huge impact on treatment success, I felt that video-games could play a role in helping to create that environment. I am working on installing tablets at the treatment chairs to give patients access to a form of entertainment, a tool to learn more about their illness, and a way to interact with others. Having something to distract you from the pain, to fill the boredom of waiting for the treatment to be done, can make a huge difference to the day. 

Playing video-games has helped me to cope better with my illness. It's something that I can do no matter how bad I feel. It's a valuable tool on the healing journey that I think is often overlooked or given a bad rep. For me, it's been absolutely irreplaceable.

When the going gets rough, you've just got to get your "Game-On"!