When my father was diagnosed with frontotemporal dementia, an incurable terminal illness, this past October, my entire life was ripped apart at the seams.
FTD has robbed me of the dad that I knew and replaced his mind, one of the most brilliant and beautiful that I had ever known, with one about as empathetic, understanding, and able to comprehend as a four year old’s. And I watch, every day, with my mother and my sister the only people who could possibly, at all, understand, as our best friend, one quarter of the family that we nurtured and poured all of our time and all of our hearts and all of our resources into, is being slowly ripped away.
The worst part about this disease?
There is absolutely no cure.
There is absolutely no way to reverse symptoms.
There is absolutely no way to ever look in my dad’s eyes again and see a glimmer of the man who raised me and whom I love(d) so dearly.
There is absolutely no way to know when the end will come.
The only certainty lies in the fact that it will come, and sooner more likely than later.
This is something that is hard for me to grasp, honestly. I grew up in church, singing songs about hope. And I struggled with my mental health for years, yet everyone always told me there was hope. And when my friends are hurting, I am quick to tell them that there is hope. Because usually, yeah, there is. Usually situations are temporary and pain is impermanent.
We, as human beings, depend entirely upon the notion of hope. We have built our religions off of it. We have cemented our futures upon it. We have painted it on the very walls that bind us that someday, those walls might, no, will, come down.
So when I hear that there is a situation that is entirely hopeless, a situation where there is only one result, a situation where the one result is heartbreaking– and that situation happens to be the situation that has become my life– I have certainly had a hard time coming to terms with it.
The worst part of it all is that no one really knows what to say, except that this situation is temporary, and this is not how I will feel forever, and this is not what the rest of my days for the rest of my life are going to look like.
And while I know the intentions behind such statements are good, every time that I hear them, I want to scream. Because I know that the inevitable will happen, and I know that I will wake up the next morning and carry on because there is absolutely no other choice, and I know that this will not kill me.
But that doesn’t mean that this, this immediate situation that is afflicting me and my entire family and everything we’ve ever known, is ever going to get better. It means that my dad is going to die. So for the longest time, I was angry. I didn’t want to hear that things were going to get better, because no other things mattered. I didn’t want to hear that I am going to be okay, because he isn’t. I wanted to wallow, for a while. I wanted to close my eyes and let it bury me. And I think, if you’ve ever grieved for somebody, especially somebody who is still alive, you can understand that.
Eventually, though (and only recently, might I add), I recognized that when people say “It will get better,” that they don’t mean that he will get better. They mean, really, that life will go on, the antithetical sun will keep rising, and one day, I will learn not to hate it for not stopping to mourn along with me.
And one day I’ll wake up and it won’t be the very first thing on my mind. And on that day, maybe, I won’t feel bad if it isn’t.
That’s what they mean.
Things will not ever, truly, get better. Hope is not a constant. Hope is not going to keep me afloat. Hope, the raft that I spent a lifetime paddling back to, can simply not sustain certain weights.
But things will get different.
I will go to college. I will write books. I will love people, and people will love me. I will make a difference. I will matter. I will spend every holiday as three, instead of as four. But our family will grow, with new voices, with new hearts and new love sparking through the stories of him that we share each Christmas Eve. And I can’t say that is better, because best would be him, here, to meet his grandchildren and walk me down the aisle and be there at my high school graduation. Best would be more stories. Infinite stories. Stories we would write together.
It will just be different, that’s all. Not better. Not inherently worse. Just different.
And that’s as okay as that can be.
There is not hope here. But I can still find hope in other places. I think we have to. I find hope for our future in the way my mom has carried on with such grace and such love, even when loving is difficult, that I can only wish to emulate and admire in word’s that even my writer’s tongue can’t wish to find. I find hope for our future in the way my sister and I can now speak without speaking, how we’ve grown so much closer and are gaining such valuable resilience. I find hope for our future in the moments we have to create for ourselves, the smiles we have to search out, the way that we are doing all that we can to teach a table to stand upon three legs (even when nobody understands the vitality of taking care of us, too; even when nobody understands except for us).
And I find hope for my dad’s future, still, because I know that every time that I look in the mirror, I will see his eyes staring back at me; we’ve always shared that same color blue. It’s always been my favorite thing about us. And I’ll remember everything, every princess ball in the master bedroom, every car ride to soccer practice where we talked about the good and the bad and the somewhere-in-between, every game played on the beach and every hike in the mountains and every birthday and holiday and trip to the zoo and the way he would lean over to check and make sure my roller-coaster harness was down all the way; every momental memory tinted pale blue.
I’ll always be able to hope that I’m making him proud.
I’ll always be be able to hope that he knows that.
It doesn’t get better; it gets different.
And so will turn the tides until we learn to stop relying on hope and to rely on love instead.