So before I get started, I want to apologize for being so delinquent this past year with my writing. I tried to write multiple times and I just couldn’t do it. Looking back, I think what I should have been writing about was something I was trying my absolute best to ignore and I couldn’t write around it. With that in mind, you might be wondering then, what brought me back. Well, a few things in the last week or so have worked as a catalyst in both good and very bad ways. First, I received a comment from someone who had read one or two of my posts and in some way, found them helpful. That was one of the main reasons I wanted to start writing this in the first place: to help someone going through something similar. Secondly, Daniel and I received some heart-breaking news this week that I’ll touch on a bit later. In between my hiding-under-the-covers and crying phases, I Googled “marrying someone who is sick” (not the best language, but you have to be blunt with Google) and found a blog post that really hit home for me called “Whatever You Do, Don’t Marry a Sick Man” . It was a refreshing and inspiring find after going through lots of depressing posts on message boards from people saying they how their partner’s illness has negatively affected their life. That got me thinking about our own journey and how we got here and what kind of future is now possible for us, and that’s something I want to share with you now.
I’ll start from the beginning. Daniel’s mom was my grade five teacher and that’s how we first met, at the back of her classroom when he had a day off and got dragged to our class. I really don’t remember much about that other than thinking “who’s that weird boy at the back?”. Fast forward a few years and a few family get-togethers, and we wound up at the same high school for grades seven through twelve. We really didn’t have much to do with each other throughout high school, and I only remember hearing about his health problems through overheard conversations with classmates or off-hand comments from my parents. It wasn’t until grade twelve that we started hanging out in the same group of friends and I started to notice him and think “this is someone who I could really like”.
Eventually, after high school, we started dating, but I still didn’t know much about his health problems. One thing that stood out was an off-hand comment about needles he made during a horror movie that hinted at what he had gone through, but even then, it was something that never needed to be fully addressed. My first memory of what Daniel being ‘sick’ really meant didn’t come until after we broke up when I got a text from him saying he was in the hospital. I’d been pretty sheltered up until then, and no one else I knew had ever been in the hospital like that before, so it was a big deal for me and proved just how real and scary Daniel’s health problems could be. Over the next year, he was in the hospital three or four more times and by that time, it was no longer something extraordinary or scary, but something almost – normal.
But this time, a year and a half later, was different. While his previous stays were only for two or three days, one – two – three – four weeks went by this time and he was still in the hospital. I visited him every week, and seeing him again made me remember just how much I liked him when we dated before, and just how much I still did like him. His health problem, which I had then identified as Evan’s Syndrome, had become harder to manage and led to a splenectomy. Not long after he got out of the hospital, we started dating again.
Entering into our second round of dating, we knew this time was different and would last a lot longer. Early on, we learned that Daniel was a candidate for a bone marrow transplant and had several good matches. This terrified the hell out of me and while Daniel was definitely on board for when the time was right, I was scared about what this meant for our future.
Fast forward to now. The bone marrow transplant happened about two years after they found a suitable match and now we’re a year past his bone marrow transplant and a month and a half into our marriage. Not long before our wedding, we met with a young couple that had also gone through a bone marrow transplant a few years ago. One thing I have been holding on from them is the fact that after about two years, his health normalized and now, it is no longer the focus of their life. After seven years, they have days where his health is no longer at the forefront and they can go days without thinking about that. That just sounded so unreal to me, that this thing that is so big and all-consuming now, could slowly fade into the background. That is my dream, and at times it seems so close that I can hardly believe it.
But, that dream that I have been holding onto, took a serious blow this week. Daniel heard from his respirologist that, if his lung function continues to drop, nothing but truly drastic measures might help. We didn’t get much more information than that, but that was enough to send us into a tailspin. I’m scared, and Daniel’s scared, that our life together will be cut drastically short and it’s hard not to feel cheated.
Now back to the article I read about not marrying someone who is sick. I’ve wondered what I would say to someone about to start dating someone who is struggling with their health, or even to my younger self. A part of me would say “stay away, there’s a lot of pain there”. But deeper down, I also know that saying that implies that there is a choice involved, and I guess on the one hand there is, but why should there be? Daniel didn’t have a choice and neither did his family, so why should I? If I really wanted, I could have walked out of those hospital doors three years ago and never looked back. But I didn’t choose to fall in love with someone who is sick, I chose to fall in love with Daniel, and yeah, there’s a lot of pain and heartache, but there’s a lot of love and joy and fun along the way as well. And looking back through our history together, I think I always would have fallen in love with him and would have had to make a choice to NOT fall in love with him. I wish he was healthy now and I wish it was easier, but he isn’t his health problems and neither is our relationship. We’re so much more than that and even in the midst of all this crap, he still manages to put a smile on my face and he happily returns it. So, looking forwards now, we’re going to live. It might look a bit different than we first planned, like more trips instead of moving overseas or having lots of pets instead of kids, but we’ll be together and we’ll do it our way, with smiles on our faces and always ready to laugh.
Thank you all for reading! I hope to write a bit more often and you are more than welcome to bug me to write, because it’s something I enjoy and (usually) never regret once it’s done. Enjoy your fall and Thanksgiving season as the cold draws us closer to those we love.