Tonight Mister Cupcake and I are going to see our favorite band, Wilco. Jeff Tweedy has a special place in my heart and rather than try to explain why I think one of his songs was the vehicle for my dad to be present at my wedding I’m just going to share this story I wrote for a website that one of my all time favorite authors has. His name is Robert Leleux and he wrote The Memoirs of a Beautiful Boy. Please read that book before you expire from the earth. It will make your heart and soul and brain shinier. He recently wrote another book about his experience with his grandmother’s struggle with Alzheimer’s and I am proud to say that I was able to find enough focus to mold a special story to share for the website which like the book is called The Living End.
We Won’t Get Along Without You When You Go
Things didn’t go as planned after my dad died. His ashes, which were to be strewn in the ocean in front of his beach condo are still sitting on a shelf in my sister’s closet.
My old cell phone containing the last photo I took of him is still buried under a pile of wires in a drawer. Every now and then I scrounge it out and look at that final image for as long as I can stand it. It was Father’s Day 2006, two days before he died. He’s sitting in His Chair, tired eyes looking right into the camera and posing in his reliable picture stance: fingertips clasped, head tilted, a slight smile. He has shorts on and his bruised, scrawny legs remind me of how hard it was for him to walk toward the end.
My heart lurches when I see the area around him—everything necessary within reach. A giant box of Kleenex, his albuterol, his glasses, a telephone with oversized numbers, pens and pencils, unread copies of Harpers and The Nation, a calendar from Unicef, the sweatshirt we brought him from Mexico, the little notebook he kept track of his meals and breathing treatments in, a headline cut from the LA Times that said “Library Bans Body Odor” that I gave him as a present and, most importantly, several boxes containing every shape, texture and size of Band-Aid known to man.
His entire world became a four by four square that we tended to and organized. My sister and our husband’s never spoke about it but I think we all hoped that as long as we used our eight strong arms to hold him up, he’d stay suspended in air, and we’d be able to maintain our wobbly orbit of love around him forever.
He had a slow, steady decline after his Alzheimer’s diagnosis in September 2001. He never forgot our names or who we were and he might have lived longer were it not for his emphysema but, looking back on the days of his illness, is like looking back on being a determined soldier in a gentle war.
I didn’t mind being in that war.
It was my sister and I that became an army of two to keep him in one piece. Our mission, from the moment he got sick, was to create a safety net the size of the Western Hemisphere with the hope that, if we cared for him expertly enough, we’d never lose him.
I thought I’d feel relief when the whole battle ended and I no longer had to watch him melt in slow motion. I thought I’d feel free when I didn’t have to picture him walking backward in the direction of a steep cliff that everyone could see but him.
When he did die, weeks after a breathing attack brought on by emphysema, the relief I thought I would feel wasn’t there. The only thing I felt was a longing to continue to make sure he was okay.
“He’s going to be so confused without us,” my sister said after the mortuary drove his body away.
Oh, he was so confused. So shaky and bumbling and flimsy. He looked to us for sturdiness and we provided an endless supply. Nothing prepared me for how much I’d miss being that kind of giver.
I miss my Saturday morning calls to him, reporting that I was on my way to go pick up two turkey sandwiches for us to eat while we watched TV in his room. I miss seeing his thrilled face when I walked in the door as if we hadn’t seen each other in weeks.
“Jesus you’re a sight for sore eyes! And you brought lunch too!”
I miss how grateful he was about every little thing.
I miss watching television together while he struggled to understand Oprah’s allure. I miss how he’d hold his Nebulizer breathing treatment tube like it was a cigar.
I miss Post-It notes, index cards and pieces of notebook paper with reminders written in huge letters on them:
DON’T GO TO DINING ROOM *** WEDNESDAY JUNE 7 ***
AMY BRINGING SANDWICHES!
I miss Sharpies, Scotch tape and bulletin boards covered with family pictures. I miss talking about all the things he still knew—baseball, politics, college football and how my sister and I were the best people he’d ever known.
I miss knowing that anything but the present moment is an illusion. I miss that feeling of not being able to imagine what it would be like without him.
Yours In Forever Reminding,