“I don’t know how to tell you this but your scan… it shows the signs of degenerative disease. And it will likely take your life.”
You know what’s so odd about those words? This isn’t the first time my brain has literally tried to kill me. In more ways than one.
But the cruelty of this diagnosis spills into every corner of my past, present and future.
Frontotemporal Dementia.
Diagnosed at age 45. In the spring of this year. Likely living with it for 4 or 5 years BEFORE now.
But how would you know? An aggressive form of brain cancer attacked my frontal lobe years ago, already making life incredibly hard for myself and everyone around me. So as the depression and mental health struggles stacked up over the years and my behavior and personality changed, how would you know? It felt like “this is just Mary now.” Sometimes I get so angry I survived, just to die this way. And the guilt and shame I’ve carried for so long and the lives I felt like I’ve ruined along the way, at times, it’s been almost too hard to bear. Literally walking to the ledge of life, but somehow choosing to stay. And even then, feeling like that was a failure because I couldn’t even do the one thing that would spare the suffering of those around me.
Right now I’m just waiting and planning and planning and waiting. And also writing, while I know I still can, in an almost frantic way. It was my life and my career for so long. I know the time’s coming when the words will just stop, I just don’t know when.
But…I’m also living. And I mean trying to REALLY live.
Something I never did before, even though I had no excuse not to.
I was given 2nd and 3rd chances and wake-up call after wake-up call but I just couldn’t get the message.
But now it’s loud and crystal clear.
What’s coming isn’t pretty and somehow I’ve made peace with it for me. It’s almost like I’m watching it happen to someone else anyway. Like a bad dream or a horror scene.
But how do you let your loved ones carry the weight of it all? Of a life you’ll likely leave behind, but they’ll carry the scars for a lifetime.
I have no clue. I really have no idea what to do.
But I hope that my heart still shines through long after my mind goes away. I love deeply and I’ve always loved fast and I hope if you know me, whether from my present or past, you know I love you too. Even if I wont always be able to tell you, I promise I do.
