A road with no exits

If you type “PCA” into Google, you get lots of interesting links:

Presbyterian Church in America

Porsche Club of America

Principal Component Analysis

Portland Cement Association

Positive Coaching Alliance

You have to type “PCA Alzheimer’s” to get information on posterior cortical atrophy. It’s not that people with PCA are less important than Presbyterians or Porsches or cement in Portland. It’s just that it’s such a rare form of Alzheimer’s that a.) no one really knows a lot about it and b.) people are misdiagnosed all the time due to its appearance as a visual issue. After all, “I must need new glasses” is a much easier thing to grasp than “My brain isn’t working properly.”

We received this label for my mother today. Only after my sister asked, twenty minutes into the conversation, “What do we call this?” I haven’t decided if it makes it any easier, though. I thought it would. I thought that by getting a label we could move forward. Identity being the first step toward, you know, solution. A diagnosis of carpal tunnel comes with very specific steps: pain killers, anti-inflammatories, a brace, possibly surgery. Even a diagnosis of cancer carries a to-do list. Biopsies and radiation and chemotherapy and setting up meal trains and prayer chains.

A diagnosis of PCA, though, is different. There isn't a whole lot to do. For someone with a Type A personality, this is hard to swallow. “We think we know what’s going on,” the doctors say. “So take these pills that really won’t allow us to know they’re working – we just have to trust they’re working – and come back and see us in six months. Oh, and do things like always go to bed at the same time, and get up at the same time, and arrange your kitchen so that items are always in the same place.”

And then that’s it. And then the family leaves, stunned, and the daughters rush to their computers and Google “PCA” and then “PCA Alzheimer’s” and the mother cries and contemplates whether she’ll see her grandchildren get married.

I am alternating between crying and raging. I cannot imagine what my mother must be feeling.

There is no cause for this. She didn’t drink too much or party too hard or drive too fast. Too much fast food? Not enough greens? Coffee addict? Sweet tooth? Nope. None of that means anything. Depression doesn’t cause PCA, but it sure as hell is a side effect. PCA, as far as anyone can tell, is pretty damn random. Which is both comforting and scary as hell.

My sister and I talked about the road ahead this evening. We had emailed back and forth a bit, and then she called on her way home from work. “Can I stop by and have an adult beverage?” “Absolutely.” It’s a wonder we didn’t get shit-faced. We talked about how our mother, being who she is – or rather, who she was – is forced to face this virtually alone. At this difficult time, she should be able to look back over a life well-lived and draw on years worth of relationships to help ease the pain. Oh, she made friends easily. She just never kept them. Acerbic wit and biting criticism always eventually drove even the most loyal away. For her, there is no loving support group, no girlfriends to hold her hand, no network to help with meals and errands. There is my sister, our father, and me. I think about how many people surround me and M and Zoe, and I realize that I can’t even begin to count them all. The sheer love I feel for my community makes me want to cry. I know if this happens to me, I will be held and supported and loved, and so will my family. I know that I will be able to face this – or any tragedy – with an army of God’s own angels. And so, in addition to dealing with this terrible diagnosis, I am sad that my mother has denied herself this joy, this love, this comfort.

I’m still processing all this. Actually, I don’t know that I will ever be done processing this. On the way to the appointment today, feeling like I was driving towards doom, a radio DJ of all people helped put things in perspective. She said that we all need to remember that no matter what we’re going through, we are going through it. Meaning, we are walking through it, not standing still. We are not stuck in this situation forever. It may get worse, yes, but ultimately, things will get better.

And with that, I’ll share the lyrics to one of my most favorite songs ever, “In the End” by Natalie Grant. YouTube it. It’s worth it. This is my go-to music that makes me feel I can make it through just about anything. Even a tragic, fucked up diagnosis that I can't do a damn thing to fix.

Can't catch a break
You've had your fill of old clichés
Like "life is hard but God is good"
And even though it's true
It won't stop what you're going through
I wish that I could say it would

But He's outside of what you feel
It might not make sense
But one day it will

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

You're standing still
Life has handed you a bitter pill
Once again you're on your face

You've got questions
Plenty of secret confessions
Wondering if you've run out of grace

But He's outside of what you feel
This life is just a moment
But our forever is sealed, oh yeah

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

It won't be about streets of gold, pearly gates
Harps and wings, diamond lakes
All I know is that He's gonna hold you, hold me
Heartache will disappear
Questions will become clear
Life will all make sense in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
We win in the end
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

There's coming a day the sun will always shine
He's gonna wipe away every tear from your eyes
Hold on my brother, things are gonna better
You're gonna smile again
Cause we win in the end

Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh
We win in the end
Oh oh oh oh, oh oh oh oh oh, oh oh oh oh oh

Glory, glory hallelujah
Glory, glory hallelujah
Glory, glory hallelujah
We win in the end

Glory, glory hallelujah
Glory, glory hallelujah
Glory, glory hallelujah
We win in the end
We win in the end