Six years sick: I would rather have a dragon

Tomorrow is kind of a significant day for me. For one, it’s Thanksgiving (we Canadians know that October is in fact the right month in which to celebrate Thanksgiving!), but it’s also six years to the day since I first got sick. Six years since I entered the world of chronic illness and became a spoonie.

SpoonCollage

Two years ago, October 11 was my would-be university convocation day and I was stuck in bed with a tube up my nose and down my throat so that was pretty terrible. Last year on October 11, I was less than two weeks into a five and a half week hospital admission so I was pretty miserable then, too.

And this year? Well, I’m not where I hoped I’d be. This time last year, I expected that things now would be better than they are, but still, things are better now than they were then. That’s super ambiguous, so let me try to clear that up for you. I can summarize where I’m at after being sick for six years in one sentence…

I would rather have a dragon.

The end.

Spoon Collage 2

Not the end.

Okay so several weeks ago I had this text conversation with my friend in Saskatoon, Tabrez.

Tabrez: Would you rather have a dragon or be a dragon?

Me: Hm. Are other people dragons? Could I still talk and effectively communicate with people? Would I still be sick if I were a dragon?

(Apparently I didn’t answer properly…)

Tabrez: Annnndddd this isn’t a game I can play with Catherine. LOL.

Me: Sorrryyy. I pick have a dragon unless it means that I wouldn’t be sick anymore then I would consider being a dragon.

It’s probably not news to you that I like to analyze, and in many cases over-analyze, things, so you’re probably not surprised to know that over the next few days I gave that question a lot of thought. Before I could make my decision there were a lot of logistics to consider!

I wondered whether or not people would still know the dragon was me…if I would keep my memories upon becoming a dragon…if I would turn into a dragon now or if I would have been one my whole life…and of course none of these questions had answers because it was just a random game and reality and logic were never meant to be part of the equation.

But of course I kept thinking about it, and the more I thought about it, the less appealing being a dragon seemed. I figured if I were a dragon I likely would have been one my whole life so I wouldn’t even be me…I’d be a 24 year old dragon who had lived 24 dragon years doing whatever it is that dragons do. But even if that weren’t the case, even if it worked out so that I magically turned into a dragon and was still me just now in dragon form, I figured I probably wouldn’t get to talk to my family and friends anymore. I would maybe be allowed to live in the backyard but definitely wouldn’t be allowed inside the house. And I don’t know too much about dragon anatomy, but I kind of picture dragon arms like T-rex arms and that means that crocheting would probably be out of the question. Being a dragon was not looking like a good time, but I kept coming back to one question.

Would I still be sick?

So really, this is what it came down to: would I give up everything about my life for the chance to not be sick? Put that way? The answer is easy.

No. No, I would not give up everything about my life for the chance to not be sick.

Having a chronic illness is awful. Life with a chronic illness can be terrible, lonely, hopeless, disgusting, traumatic, and so many other negative adjectives. But those adjectives describe my life with an illness.

They do not describe my life. My entire life is not awful. It’s not terrible, lonely, hopeless, disgusting or traumatic. Because my life is more than just my illness. And for all of the awful things I’ve gone through and the terrible moments I face every single day, I’ve also been witness to an incredible amount of goodness. I have encountered so many wonderful people, people who have made me laugh, showed me compassion, and gone out of their way to make my day a little brighter and my life a little easier. I have had people reach out to me and help me in my most vulnerable moments, and I’ve had the opportunity to reach out to other people and be there for them in those moments of their own. That incredible amount of goodness has brought with it the most authentically beautiful side of humanity.

I have been discouraged, demoralized, and pushed aside, but I’ve also been empowered, uplifted and inspired. I’ve been poked, prodded and cut into, but I’ve also been treated with care and concern and have been held together when I’ve otherwise been falling apart. I’ve felt lonely and isolated, but I’ve also never been closer to my loved ones than I am now. I’ve found myself headed in the wrong direction more times than I count, but I’ve always managed to turn myself around again. I have experienced all of this because I’ve been sick, but also because I’m human. As far as I know, dragons don’t have these same experiences.

Being sick has changed me. It’s changed my family and my friendships. It’s changed my values and my perspectives. It’s changed my goals and my interests, my worries and my fears. And all of this change? It’s not all for the worse. Some of it’s for the better.

If I could snap my fingers and not be sick anymore but still be me, absolutely I would do it. The thing is, that’s not realistic.

Why don’t we look at a more realistic situation…the dragon situation, of course. If I had the choice between being a dragon and having a dragon, I wouldn’t want to be a dragon. I would not change everything about my life, everything about me, for the chance to not be sick.

So like I said, I can summarize where I’m at after six years sick in one sentence.

I would rather have a dragon.

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The not worst year of my life

It’s the end of the year, which means that I’ve been doing the same thing as a lot of other people: reflecting on the last year and thinking forward to the year ahead. Since I have a blog now, and that basically means I publicly post my thoughts and reflections, I’m going to tell you what’s going through my mind these days.

A year ago, at the end of 2013, I felt pretty defeated. 2013 was not an easy year for me. I started the year by taking some time off of school to get my health back on track. I naively thought that after a month of taking it easy I would be back to normal…and by normal I mean managing my gastroparesis with medication and diet while maintaining my weight, going to school, working and volunteering. Unfortunately, it didn’t work out like that and I actually spent 2013 getting sicker and sicker. I was unable to go back to school, I withdrew from dance classes, my relationship ended, and I ended up having to give up my job teaching dance. All because I was sick. I spent the month of October with a feeding tube up my nose and down my throat, followed by two months of desperately struggling to eat enough to avoid another feeding tube. I felt like I had lost what made me..me. Like I said, by the end of the year I was feeling defeated and I was ready to put the year behind me and move on.

To add to that defeat, my desperate struggles to avoid another feeding tube hadn’t worked and the decision was made at the end of 2013 that I would have a feeding tube surgically placed in the new year. My nightmare of a year had ended, but the nightmare hadn’t. I was so hopeful that the feeding tube was going to be ‘the fix’ and turn things around for me! I was going to get back to school! Maybe by next Christmas I would have improved so much that I wouldn’t even have the feeding tube anymore! 2014 was going to be a happier and healthier year.

So here I am now, at the end of 2014, reflecting back on the most challenging year of my life and not quite comprehending everything that has happened. Quick recap in no particular order: surgery, feeding tube, pain, granulation tissue, nausea, doubtful doctors, more nausea, burst balloons, weakness, exhaustion, hospitalizations, ER visits, TPN, appointment after appointment, missing Thanksgiving, missing Christmas, medication trials, X-rays up the wazoo, endless blood tests, sleepless nights and watching everyone else move on with their lives while I’m stuck in bed. And I’m not heading into 2015 healthy. I’m dealing with a lot of new and debilitating symptoms and waiting for several appointments with specialists who can hopefully get to the bottom of said symptoms. It was not the healthier year I hoped for.

At least not physically.

But isn’t health about so much more than just the body we live in?

A year ago I felt defeated, discouraged and lost. I felt like I had no identity and all I could focus on were the things I couldn’t do anymore…work, go to school, live on my own, etc. I was scared, dreading getting a tube and everything that it would entail. I was hopeful that 2014 would be a better year, but my hope was rooted in desperation; I needed it to be a better year because I didn’t think I could handle anything else.

One year later, I may be physically sicker but I am also happier. My identity is no longer defined by the things I can or cannot do; it’s defined by who I am as a person. 2014 was incredibly challenging but those challenges were what made this year one of personal growth and that growth is what helped me rediscover who I am. There are even more things this year that I am unable to do, and while that still gets me down when I think about it, I spend more time focusing on the things that I can do. I cannot go to school but I am still learning new things every day and using that knowledge to advocate for a better future for myself. I cannot make spontaneous plans with friends and do too many things in the real world with them, but I can connect with people all over the world facing similar struggles. I cannot enjoy food without consequences or eat enough to sustain myself, but I can safely care for my central line and handle all my TPN on my own, allowing me to enjoy the comfort of my own home.

I am hopeful, once again, that 2015 will be a better year, but my hope now comes from a place of peace. I know it will be a better year, because I know that ‘better’ is not just determined by my physical health. All of my struggles this past year have made me a better person, just as all of my struggles in the new year will do the same. All of my struggles this past year have allowed me to connect with some truly wonderful people, and next year I’m sure I will meet even more. Of course I hope for improved physical health, but I know I will be able to face whatever comes my way. It won’t always be easy, and I won’t always have it all together, but I will be okay. 2014 taught me that.

So maybe my body isn’t healthier, but my spirit is.

I’m going to take some advice from my new calender and let go. At least I’m going to try. I’m going to try and let go of the doubt, the fear, the pain, the isolation, the frustration, and all of the other baggage from the last year (except of course for my feeding tube and TPN backpacks…that literal baggage is coming with me!). There’s no need to lug all that around.

Besides, I need to make room for everything I am going to carry with me: the joy, the hope, the humour, the courage, the determination, the patience, the understanding, the strength and everything else 2014 gifted me with. All of that I’ll keep, because all of that will make the baggage 2015 is sure to bring a little easier to handle.

This was the hardest and most challenging year of my life. But it wasn’t the worst.

And next year? Next year will be better.

Wishing you all a new year full of whatever you need it to bring!

Words of wisdom (2)

News of the day

I have always loved checking the mail. I don’t know how it works where you live, but our street doesn’t have door to door mail, we have a community mailbox. Checking the mail was always my thing growing up. I have actually had serious debates with myself about whether I should check the mail even though I checked it two days ago, or if I should wait until it had been a week because then it’s more fun. We’re the first house on the street, and our street is a bit of a hill, so checking the mail involves walking down the street. When I was really sick and basically bedridden, checking the mail got me up and about even for just a few minutes. After my surgery, when I was too sore to move much, the first way I got myself up and about was by hobbling down the street to check the mail.

Why am I telling you this? Just hang on…

Several months ago we got a letter saying that in the next few weeks our mailbox would be switched out for the new kind that is apparently harder to break into and also better suited to packages since everyone is ordering things online nowadays. Much to my disappointment, that new mailbox never came! Then, last week sometime we got new mailbox keys and another letter saying that we would be switched over to the new kind very shortly. I wasn’t holding my breath.

Well, I just walked down to check the mail and lo and behold, the new mailbox was there!! If you think I am faking my excitement about this, you should know that on my way back up the street I shared the news with a neighbour, and when my sister called a few minutes ago I answered the phone by skipping the hello’s and jumping right into “the new mailbox is here!” And if you still don’t believe me, well scroll down to the end of this post and you will see a picture of me with the new mailbox. (No, I wouldn’t have a picture with the new mailbox if I wasn’t writing a blog about it, but the excitement is real, my friends.)

So again, why am I telling you this? Am I just crazy?

Yes, I am crazy, but I also have a point here.

I experienced true excitement over a new mailbox. Trivial as it is, it made me happy. I was equally excited earlier in the week when my medical supply guy gave me 200 generic Gravol tablets for free. That’s right, I was truly tickled over anti-nausea medication. I also can’t wait until October or November when the fabric store starts carrying winter and Christmas patterns so that I can make festive tube pads.

Yes, it’s too bad that some days I feel too sick to do much or go anywhere, but those days can be made a tiny bit brighter by checking the mail. Yes, it’s rather unfortunate that I have to take anti-nausea drugs every day, several times a day, but free Gravol is still a fun surprise! And yes, having a feeding tube is not fun, but it’s a little bit less terrible if I have fun tube pad patterns instead of plain, boring gauze.

I get excited about the simplest things, I look forward to the most random things, and some of the most trivial things make me disproportionately happy. Call me crazy, but that’s how I cope. That’s how I make it through the day. If I spent all my time focusing on how overwhelming this whole chronic illness thing is and despairing over all the things I wish I could do but can’t, it would ruin me. And it would only make it even harder to manage everything. So I don’t.

Instead, I celebrate a new mailbox.

Think about little kids, and how excited they get over learning something new or seeing something cool. We don’t have to lose that as we grow older. If anything, we need to hold onto that even more as responsibilities take over and life gets harder.

It all comes down to joy. Joy is what gets me through.

Yes, I am crazy. But I’m happy, too.