Kaitlyn and her grandma smiling at the camera

This is difficult: Why I Walk

By Kaitlyn Rufer

This is difficult. 

There are a lot of other words that I could use to describe this disease, but I think this is the one I lean on the most. It’s impossible to encompass all the emotions I have about it in one word. Completely impossible. 

Even many words is difficult. How many poems, stories, rants, empty word documents, hidden blog posts have I written about this to try to cope, to try to work through the utter heartbreak in lost memories and the bittersweet moments of clarity? 

Kaitlyn as a baby in her grandma's lap

I find myself scrambling to record what I remember of our time together when I was young. I cling to the pages of her books that now sit together on their own shelf in my room, hugged by the Winnie the Pooh bookends that even I couldn’t leave behind (because what are bookends good for if you have as many books as I do to fit on one shelf?). Those bookends are the one exception. I have a bag of her old t-shirts that still smell like her. I carefully pick one out at a time when I need to feel some semblance of a hug, and I wear them as night-shirts until they smell like me instead. I pour over pages of her teenage journal, laughing out loud and tearing up and smiling at the things she probably never said but that all of us have thought or felt at one point or another, and feeling like she’s still talking to me and giving me advice and still… her. 

I have two dozen voicemails spanning four years that I never deleted. I never figured out why I couldn’t delete them, even in the few weeks after receiving them, but now I could not be more grateful for my hesitation. I can hear her voice, I can hear her say “I love you,” and “I’ll see you soon.” 

My relationship with her is unique. To say we were close is, I think, an understatement. She is in my earliest memories. She was my confidant, my friend, my shopping buddy, my relationship counselor, my tea-party date, my homecoming-dance emergency-repair team, my supporter, my Grammy. 

I could write novels recounting each day we spent together, our routines when mom and dad were at work, each imaginary game she would humor me in. 

Nowadays I find myself searching for something to help her remember them too. This disease stole those days, those laughs, those smiles, those memories. I was scared, and I was angry, and I was cripplingly sad. This is what it feels like to suffer loss without losing someone. It’s a difficult thing. With a lot of emotions, and a lot of feelings, and a lot to reconcile within one’s self. 

Maybe I can’t talk to her about the first time that we went to the Strawberry Festival with my grandpa and my brother and think about how much fun it would be to go now, all of us older and less-inclined to want to climb the portable rock wall, or run through the splash pad at the park in our clothes before grabbing some strawberry ice cream and kettle corn for the trip home.

And maybe I can’t ask her about her first apartment with my grandfather or when she felt like a “real adult” for the first time, or how she knew she was with “the one” when she did. 

But regardless of how much this disease has affected her in such a short period of time, or of how many questions I realized I would have when I couldn’t really ask her anymore, or any of the other unforeseen thoughts and fears and emotions that have come up throughout all this, I know one thing. 

I know she loves me and her family just as much as she always has, even if we can’t see that love as plainly as we used to. 

Just like the moon isn’t gone when you can’t see it above you.

This is for you, Grammy.Alzheimer’s is a degenerative brain disease that affects almost every aspect of everyday life. I’m joining my family team, Team Grammy, in the Snohomish County Walk to End Alzheimer’s this year. My starting goal is $500. Every little bit counts, and if you find yourself in place to be able to donate, this is a great cause that will use the funds to help provide care and support to those affected and to their caregivers, and to further research on the disease so that maybe one day, Alzheimer’s will be a thing of the past!

The world may look a little different right now, but one thing hasn’t changed: our commitment to ending Alzheimer’s. This year, the Walk to End Alzheimer’s is everywhere — on every street, trail and treadmill. We’re moving forward to end Alzheimer’s. Join the fight at alzwa.org/walk

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