The Blessing of Alzheimer’s

98
98

“Now tell me, Micah, how is track season going for you this year?”

I smile at my Grandpa across the white, round table in his backyard and say, “I just told you about that, Grandpa. Do you remember?”

“Oh, that’s right! What’s going on with my mind these days? I guess there’s only so much room up here.” He taps his bald head three times with his forefinger, laughs, and I join him.

Then I tell him for the second time on this sun-drenched spring afternoon about running the hurdles, and how much I like it. He smiles when I tell him I’ve won a few races, frowns when I tell him I’ve lost a few as well, and when we finish, my Grandpa toasts me with his lemonade and tells me how proud he is of me, and that he loves me.

For the next 15 minutes we chat about my mom and dad, his wife (and my grandma) how he’s not swimming down at the YMCA anymore—but can’t remember why he stopped—and how green his back lawn is looking.

Then he leans forward, his eyes bright, and he takes my hand in his. “Tell me, Micah, how are you doing in track this year?” As he squeezes my hand tight, tears fill his blue-gray eyes. “I’ll bet anything you’re a star.” The tears spill onto his cheeks. “Yep, they’re lucky to have you, right? I’m so proud of you.”

I smile at him as wide as I know how, and begin to tell him again.

Alzheimer’s did a funny thing to my grandpa. I want to tell you about it, but first let me give you a little background so you’ll understand the significance of how he changed.

My grandpa grew up in West Seattle as an only child, had an extremely difficult childhood, joined the Navy at 19, and never returned home. But the scars of his early years went with him. He built a shell around himself to keep his heart from being hurt again. He learned how to block any emotions from getting in, and he learned how to keep them from getting out. And he learned how not to cry.

My grandpa was honorable to all, worked extremely hard to provide for my grandma, my dad and my aunt. But saying I love you was a challenge for him. He would say, “You’re the best in my book,” and, “You’re #1 in my mind,” and when I told him I loved him, he responded with pats on the shoulder and big smiles, but expressing what was really going on deep inside wasn’t as easy.

Then the Alzheimer’s came.

It progressed slowly at first, and we didn’t notice the profound change in Grandpa until Thanksgiving Day, a year and a half after he’d been diagnosed. After our traditional prayer, my grandpa didn’t let go of my hand on his right, or my dad’s hand on his left.

“You know something? I don’t know what I’d do without all of you. You’re so special to me. So, so special. All of you are such a gift from God, and you’re what I’m most thankful for today.”

Tears welled up in my grandpa’s eyes first, but the other nine of us around that table joined him within seconds. It was the first time I’d heard him speak with such tenderness and love.
After that, in the following months and years, the rest of the shell cracked, then sloughed off until there was nothing left but a tender, compassionate, funny, playful man. A man no one could keep from falling in love with.

And his inhibitions? Gone! He started going up to strangers and engaging them in conversation like they were long lost friends. Laughter constantly poured out of his mouth. He poked fun at himself, and teased others with the gentlest of words. Every holiday meal became a celebration of life and each other.

There was a freedom that grew in him that I believe most of us long for. He didn’t care what others thought. He didn’t worry about saying the wrong things at the wrong times. He was completely, utterly himself in every moment and it made it hard to keep a grin off my face when I was with him. And it made me want to be like him.

The transformation my grandpa went through has changed me forever. I don’t look at people the same way anymore. Now when I meet someone who is a bit gruff, or seems closed off, I don’t judge them. Because I can’t see what’s underneath the surface. I don’t know the pain they’ve been through that has caused them to build walls around their heart, so I look for the good, the joy, the brightness, and the tenderness that is floating deep inside them. Because I believe it’s in there. Sometimes I can see it. I think anyone can if they’ll take the time to find it.

I was also changed by how my grandma cared for him during the years my grandpa’s mind was slipping away. At dinner parties she was always there to fill in the blanks, to finish a story when my grandpa couldn’t. At the grocery store, when he couldn’t remember that he loved Hershey’s Chocolate syrup on his ice cream, she gently reminded him. She made his life as normal as was possible. My grandma seamlessly guided him from day to day as questions he knew the answer to on Monday vanished by the time Friday arrived.

When he woke up at 2 a.m. four nights in a row, not knowing where he was or who he was, she talked him through it, comforted him, and reassured him that it would be all right. And then in the morning, she would make his scrambled eggs with a touch of cheddar cheese, and English muffins, and strong coffee and tell him how much she loved him—even though he wouldn’t remember the comment two minutes later.

My grandma taught me that love is not a feeling but a commitment. They vowed on their wedding day to love each other in sickness and in health. Maybe she didn’t understand what she was promising—how could she at 21 years old? But she lived out her promise anyway. People said she should put him in a home. She never considered it. There’s no gold medal for doing what my grandma did. No parades or interviews on TV. But there should be because I’ll remember her example of selfless love long after the latest movie star or athlete fades from my mind.

I realize “The Blessing of Alzheimer’s” is a strange title for an essay. And please understand, it was devastating to watch my grandpa’s memories slowly slip away. It ripped at all of us to see my grandpa stolen from us by this insidious disease, and when he breathed his last, we all broke down.

But it was also an incredible gift to me and the rest of my family. It allowed us to see, and celebrate, and get to know the fascinating, wonderful, incredibly loving man who had been hidden for all those years. Alzheimer’s released him, and he burst out and danced with us, loved us with abandon and showed us a freedom I want to live from every day for the rest of my life.

98
98
JOIN THE CONVERSATION

RELATED VIDEOS

I Laugh at My Kid (and You Can Too)

906
906

I laugh at my son. Often. I like to think that most people laugh at their kids (you do, right?) so that makes me pretty normal.

Kids are hilarious. They say weird stuff, are embarrassingly easy to trick (*cough* Santa), and generally act the fool. In the animal kingdom, baby humans take the cake for comedy.

So we laugh at them — because they’re cute and because we can. At least I do.

IMG_6837_zps2c2e4ad3

 

But when your child has a disability, sometimes people aren’t sure if they’re allowed to laugh along with you.  And that can get awkward.

Recently, I was swapping funny kid stories with a couple of friends. I told them about this weird thing that happens when Simeon crawls — and it didn’t go so well.

Here’s a recap:

Sim isn’t doing a four-point crawl but he has mastered the art of commando crawling (which is clearly the manlier of the two crawl options and obviously superior).  During these military-style crawling expeditions he scouts for things that don’t belong to him (Daddy’s PlayStation games), forages for treats (discarded Band-Aids) and pivots in circles like a break dancer.

And that’s where it gets a little funny. Because Sim can’t move his legs, he runs into a problem I like to call the “Friction Affliction.”

IMG_0101-001_zpsb64b74e7

 

2013-06-132_zps305e0853

 

Looks crazy, right? It isn’t hurting him, and it’s not dangerous (especially since we straighten him out quick), but Sim comes off looking like some kind of baby-contortionist. I have stage mom fantasies of putting him in the circus where — with his good looks and my sparkling personality, we would make millions.  

So that’s what I told my friends. The problem is, I don’t think they heard anything past “can’t move his legs.”  What was intended as a funny story fell on their ears like the groans of a Shakespearean tragedy–  no laughing matter. Observe this reenactment:

Here’s M.E:

2013-06-131_zpsc80a28ca

Here are my friends:

2013-06-13_zpsdbad71fd

It was awkward, you guys — for everyone involved.

Maybe the problem is that, unlike my friends, I’ve gotten comfortable with the fact that Simeon doesn’t move his legs. Maybe the problem is that we all need to lighten up when it comes to how we treat people who are different. Or maybe my story just wasn’t funny (gasp!), and I need to work on my comedic timing– but I kind of doubt that since I’m a riot and you know it. Whatever the reason, it felt really crappy (pardon my French).  Everyone was allowed to laugh at their kid except for me — because my kid is different.

You think your kids are funny — you chuckle when they sleep with their faces mashed up against the crib bars, you giggle when they say “truck” but it comes out as the very-baddest-word-in-the-world and you even laugh when they crawl like a weirdo.  Instead of being strange, laughing at my son actually makes me just like the mom of a typical child.

So I’m here to say that yes, I think my son is hilarious — even though he has a disability.  And if I laugh at him, that means you can, too. I mean it, you guys. It’s OK.

9a35eda1-b949-4b3f-8593-7e9ea24fc1ca_zpsb43b3cfd

 This post originally appeared on What Do You Do, Dear?

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

906
906
JOIN THE CONVERSATION

Custom-Made Shoes Help Kids Trek Through Life’s Most Difficult Journeys

373
373

A child walks into a hospital for his first day of chemotherapy. Another has already been in that hospital for weeks, receiving treatment after treatment for her rare illness. In a different wing, a teen is relearning how to walk after an accident. They’re all on different, difficult journeys they had no choice in embarking on.

425486_406256686120039_740780384_n

And if they’re going to make it through, they’ll need a good pair of shoes on their feet.

Better yet — they’ll need a magical, custom-made, one-of-a-kind pair of shoes. That’s what Madison “Peach” Steiner thinks, anyway.

About three years ago, the 23-year-old artist from Farmington, N.M., founded “Peach’s Neet Feet,” a nonprofit where volunteer artists paint shoes for kids and teens living with diseases, disorders and disabilities.

“We use the shoes as a way to celebrate people,” Steiner told The Mighty. “We say, ‘Hey, these are yours and only yours.’ Kids with cancer may view them as their fighter shoes. A nonverbal kid may see them as a way to show their identity.”

1903984_646765872069118_5218148428999096611_n 1039742_487142814698092_186685806_o

11771_461425400603167_2119366757_n

Steiner estimates that her 30 volunteer artists have painted 2,000 shoes to date. To apply for a pair, parents can [email protected] with their child’s name in the subject line. Steiner then sends an application, most of which are approved. The artists sometimes even visit the kids to make sure they get the design right.

“We want the shoes to come out as unique and individual as possible,” Steiner explained. “They’re a part of the kids that represents who they are. From the beginning, I’ve hoped these shoes would become more than just shoes.”

539065_364483620297346_11834524_n

10304880_649509958461376_2968770263813780025_n

10372235_645728795506159_7420215004775649245_n

10446717_649856391760066_1391216398134662992_n

Kids outgrow, wear out and get shoes dirty. Kids step in puddles and spill drinks on themselves. Steiner knows this — she hopes that when they’re ready, these kids and their parents will view the shoes as a keepsake, a symbol of a long, hard but maybe beautiful journey.

On one occasion, Steiner delivered a pair too late — the shoes arrived on a customer’s doorstep days after their daughter had passed away from cancer.

“It was a situation where I froze and thought, ‘This is going to be a bad thing or a good thing,'” Steiner recalled. “They’ll view the shoes as something negative or they’ll see them as something to cherish.”

This couple chose the latter. They contacted Steiner to let her know they’d always take the shoes with them — in the car, on errands, on trips and to a memorial service at their daughter’s school, where a tree was planted in her honor.

“They were going to carry the shoes with them wherever they went,” Steiner said. “They were going to continue their daughter’s journey for her.”

10427231_647571631988542_1944408582325494574_n

Visit Peach’s Neet Feet’s website and Facebook page to learn more. If you’d like to cover the costs of a pair of shoes for a child, head here.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

373
373
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.