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.