So, by the time you’re reading this blog post, you already know what happens to Bernard in the May section. (If not, this post will contain spoilers). You all probably really hate this right now, too. I’ve been dreading this chapter just as much as the pregnancy one because these were the risks that I knew I was taking when I got into writing and posting the story. It’s been the culmination of these two plot twists that have made me try and fail to write it so many times. I didn’t want to face this part of the story, either, and I can imagine how crushed some of you may feel.

This is kind of ridiculous, right? I’m talking about Bernard as if he is a real person. But these feelings are very real, and this is something very sad. Most of you are probably wondering why on earth I’ve made this happen then, if it upsets me just as much as it upsets you, considering I’ve had the power to change it all along. The two times I tried to write this and failed before even getting to this part should have been good indicators that it was too sad of an idea to continue with, right? But I don’t think the story would have been what I really wanted it to be if I did not make Jasmine have a baby or have Bernard get sick. Ever since I finished TDK, it was these two events that I ended up plotting out consistently.

The first time I tried to plot this out, it was New Years day. I remember sitting in my room surrounded by books on my bed, and just reading the back and staring at them, trying to figure out what one to read and why they were so popular. This had been precipitated by asking my mother what her favourite books were and her boyfriend as well (who was a writer). I eventually gave up and let my mind wander and I began to plan the sequel. They were going to be twenty-five (why? I had no idea, it just seemed like the scariest age I could think of, which is hilarious now that I’m almost that myself).  Jasmine was going to have a baby in this, clearly, because again, this was going to be about the things that terrified me the most.

I don’t think I quite had the Alzheimer’s idea yet, but it would come a few months later. I was in my first year psych class and they put on a small documentary about the illness. I knew about it before, and the video itself wasn’t too illuminating, but one thing resonated. The narrator said, “when you have Alzheimer’s, you begin to lose yourself.” I walked out of the class, knowing that this was going to happen to Bernard. Again, we’re talking about terrible, universal fears here. The fear of commitment and babies was sort of obvious and somewhat easy to overcome. But the idea of losing the “self” and what that would entail still utterly terrifies me. Even though I wrote out and composed a narrative of the worst fears in order to be “free” of them, I’m still slightly paralyzed by this one. Even as I wrote it, I skimmed over those parts like crazy and had to physically force myself to sit and behave and just edit and fill in the gaps when I went back to it. As I write this (way in advance of posting it) I have not had a single response about it, not even from my beta, and I kind of dread it, still.

Even though this part of the book still scares me, I knew it had to happen. It hadn’t seemed impossible to convey in a narrative for such a long time, and then I went to graduate school. I met S, one of my professors and now my second reader on my thesis. She specialized in Alzheimer narratives. There are a lot out there, and some of them do a good job, and others fall on old tropes and try to create a melodrama around something that is very serious – and very real. While I was studying in S’s class, she mentioned an RA position (research assistant) consisting of going to an author’s house who was in the later stages of Alzheimer’s and collecting her work with her husband. This request was sent out through an email and I remember getting it and being brought back into the story immediately. The woman who was sick was also an artist.

With time, and enough research, I knew I could try and do this again. Eventually. I tried to listen to S as much as possible and I began to understand the complexities of what happens when we tell stories about disability. Any type of identity politics (including being gay) always has some type of typical trajectory surround it. I’ve talked a little bit about the gay narrative and the coming out story, and my thesis itself deals with the transgender one. So, I knew that going into this I wanted to avoid and hopefully rewrite the Alzheimer story and add some diversity instead of rehashing the same themes. I also did not want to tell the typical pregnancy narrative, nor the typical love story. I never want typical. So all the things that you think you know about Alzheimer’s and what’s going to happen next as you go through these parts of the story, I will probably try to avoid. Bernard will not get lost, will not forget who he is, and will not fail to recognize Thomas or their life together. Keep in mind that this is early on-set and at most, he’s been affected for four years by this. The illness usually starts to get to the serious phase (losing bodily control and complete dementia) in the tenth year or so. He is getting confused every so often, but that is not what’s going to define him now. I want to add humanity to this part in particular, because even in spite of all of this, Bernard is still Bernard and I always want to do my best to represent him.

There are good representations of Alzheimer’s out there – good at least, in the sense that they don’t fall on old tropes or they bring a sense of dignity to the narrative.  One film in particular that S told us about is the Canadian film Away From Her.

I actually couldn’t watch this film until I finished the book itself, so it didn’t really inform me that much. It is worth a watch, however, and it is a really poignant depiction of how a couple goes through the disease together. I read Soucouyant before writing in S’s class, and I admit, that text greatly influenced the statements made by Lydia in the prior part. It is another Canadian text and it deals specifically with early on-set Alzheimer’s, too. It is a fantastic read and I highly recommend it.

I don’t want to tell you too much more about the story, but please, trust me. I know the rest of the book looks incredibly dim now that this piece has been added in, but it will be okay. I tried to think of so many ways to get around this issue. I had many alternative endings and alternative things happening to Bernard (because, for some reason, the subconscious part of me that does the writing and forming of stories, wanted him to be affected in some way). But this is what it happening. It could be symbolic of my own loss of self, a statement and plain reality of his age, or something more disturbing. It doesn’t really matter what it figuratively means, only that I’m going to try and make this a better way of telling the typical story. This is what’s happening, but it doesn’t have to have the worst ending in the world. I couldn’t end it that way.

So, suspend your disbelief for the next little while. The next few months – June and July – may seem dim, because Thomas is still dealing with this himself. But I promise that by August and September, things look up again. It will be difficult, but there will be a reward, I think, by the end of it all.