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Margaret: Dancing with dementia

"Come on in, Mom's just finishing up a phone call." I followed Michelle into the grand foyer and through to the living room where her mom, Margaret, sat on the couch. A tiny woman with a bright outfit and scrunchie in her thin gray hair was on the landline phone, talking loudly and enthusiastically to whoever was on the other end of the line. She would laugh uproariously and hit her knee; I've never seen someone so thoroughly enjoy a phone call. She smiled at me, knowing I was there to be her new friend and companion, and hung up the phone, beckoning me over for a hug. I bent down and we embraced, then I sat next to her and we started to talk. I fell in love immediately, she was so warm and fun and welcoming. The lilt of her accent took me to the islands, the warmth of her hands brought me home. We immediately hit it off.


Margaret became one of my best friends. Three days a week I'd drive out to her daughter's house, where Margaret lived with her devoted daughter Michelle, Michelle's husband, and their two teenagers. I'd come pick up Margaret from the house and we'd hit the town, not allowing ourselves to waste any time.


Every Tuesday and Thursday we'd go to the local gym for Zumba class. We'd pull up and I'd lug Margaret's wheelchair out of my trunk. I'd help her get situated in the seat then we'd roll inside. As I pushed Margaret past the front desk to the group fitness room in the back, she'd greet everyone we passed, smiling and waving like royalty. We'd get to the exercise room and join the other olders waiting for the Silver Sneakers class to begin. Margaret would introduce herself to our classmates every week; every week they'd graciously accept her introductions, some gently reminding her that they knew her already. Margaret would laugh and grab their hand in both her tiny ones, eyes shining bright behind the glasses that were always sliding down her nose. Everyone loved her.


We'd go into the room where everyone would choose a spot to stand and warm up. At first, Margaret – who stayed in her wheelchair while I sat in a chair next to her – and I would sit in the back; everyone else was on their feet and moving energetically; we didn't want to get in their way. After just a couple of classes, though, the other dancers insisted we go to the very front. "You need to be able to see the teacher! Go on up there!" Their kindness was appreciated – Margaret good-naturedly tsk-tskd "Oh, you shouldn't have!" and I thanked them profusely – but really, it didn't matter if we could see the instructor or not. Margaret could not mimic a single move. For the entire hour-long class, every Tuesday and Thursday, Margaret sat in her wheelchair and danced nonstop. Did her moves emulate the guide? Not even close. Did anyone else in the class care? Not at all.


Well, except for me. The first few months, I'd spent the entire class whispering in Margaret's ear: "No, other arm! Put it up, not down!" "You're bobbing your head, he said to tap your feet!" "Margaret, you're singing along to the music out loud… we can all hear you and not the teacher! Shh!" Sometimes I'd even stand behind her wheelchair and physically guide her arms to do the movements of the rest of the class. I finally realized what Margaret knew all along: it did not matter, not even the slightest, if she was following along with the choreography. She was having a good time, everyone loved her, and I just needed to chill out.


The Zumba classes weren't the only time Margaret taught me not to worry so much about what other people thought. Once a week we'd go to Jason's Deli. (I'd once told Margaret that I grew up going to Jason's Deli with my grandparents, so she insisted we do the same.) I'd wheel her into the restaurant and we'd choose a seat next to the window. I'd go through the line and order Margaret's meal, then open my lunchbox to have my own food I'd packed at home. I was always terrified that someone would come over and scold me for bringing my own food into the restaurant. Is this allowed? Will I get in trouble? Of course, much like the dance class, no one cared. The only time people would look at us was to smile or nod encouragingly at the two unlikely friends at the table by the window.


On the days we didn't go to Jason's Deli, we'd go eat our lunches at the grocery store. Again, I was worried we'd get kicked out for using the Kroger Cafe space when we'd both brought food from home. Again – do you see where this is going? – no one minded at all. In fact, we became known as regulars, our presence expected each week. The workers who took their breaks there would be concerned when we didn't show up at our usual time, in our spot at the table between the arcade machine and handicap bathroom.


Then there were the times we'd go to the local church for their bible study and luncheon. She was the only one in a wheelchair, I was the only one under 75. I was so, so uncomfortable that first week. I remember on multiple occasions Margaret would close her eyes for the prayer then not open them again until I gently kicked her under the table. She almost always fell asleep during the pastor's message. I was mortified and kept nudging her. She'd look up, smile at me, smile at the other ladies at our table, and then close her eyes again. Back to sleep. But every single week we showed up, the ladies greeted us excitedly. Never once did they comment on Margaret's habit of dozing off, never once did they make us feel anything but welcome.


Margaret taught me to look over my shoulder less, and be in the present moment more. We loved going to the park. We'd sit at the picnic tables by the lake and I'd read aloud. We completed complete biographies of Dolly Parton, Michelle Obama, and every member of The Beatles. Margaret loved listening to me read. She couldn't remember what happened in one chapter to the next, but she didn't care.


Margaret loved Christmas music. We'd blast Mariah Carey's holiday album on repeat, Margaret singing every word wrong but insisting on singing along, loudly, anyway. One day on our jaunt around the city we stopped at CVS to grab a prescription Margaret's daughter had sent in. Unload the wheelchair, help Margaret sit in it, roll inside, get the meds, roll back out, get Margaret in the car, load the wheelchair back into the trunk. Slam the trunk closed and turn my key to manually lock the trunk and pull the key back out. But only the fob emerged; the metal part of the key has broken off inside the lock.


At this moment, I'm panicking, of course. "Oh my god, Margaret I'm so sorry. The key broke off and is stuck inside the lock on the trunk!" I try everything, even buying tools in the CVS we're stranded at so I can try to fish out the key. (Turns out bobby pins are not as useful as they seem in spy movies.) Nothing works. We call a locksmith to come out and meet us. More than an hour has passed and I'm sweating through my sweater. Margaret is completely unphased. She just sits in the passenger seat patiently, smiling.


I call Margaret's daughter and tell her what's happening. I nervously ask if I can send Margaret home in an Uber so she doesn't have to wait for the locksmith. Her daughter agrees and Margaret —although she has never even heard of Uber — is game. She hugs me goodbye and gets in the back of a stranger's car, smiling the whole time. "What an exciting adventure!"


As I had paced the parking lot embarrassed by the situation and wondering if the CVS managers were upset at us hogging one of their handicap parking spots, Margaret remained unbothered. Unworried. Totally and blissfully unconcerned. It would all work out, she knew.


Margaret didn't care what the other Zumba dancers thought of her. It never crossed her mind to worry about if Jason's Deli was bothered I brought in my own lunch. She didn't duck her head as I tried to sneak us into the Kroger Cafe seating area without buying anything. She didn't get hung up on the fact that she didn't remember what happened in the last chapter of Michelle Obama's book; didn't care if she loudly sang the wrong words to "Santa Baby" or whatever was playing over the gym speakers. She wasn't worried if other CVS patrons noticed we were stranded in the parking lot. She just wasn't worried about anything.


No matter the situation, Margaret wasn't focused on the reactions of people around us. But I was. And when I finally got brave enough to look around, time and time again it was the same:


The reactions were kind.


All the fears in my head about what other people would think of us – a white girl right out of college and a brown grandma from the islands – were just that: in my head. Once I learned not to cast my eyes down to avoid the looks of the other dancers in Zumba (How embarrassing, they're probably wondering why we're even here…!) and actually lifted my head to look at our classmates, I saw yes, they were looking at us. Yes, they saw us. And they smiled. They loved Margaret completely. They were glad we were there! I was the only one worried.


Maybe Margaret just expected the best in people. She never imagined they'd have any reaction – to her dementia, to her lackluster choreography, to my homemade sandwich – other than one of kindness. So that's what we got.


I miss Margaret. But as Christmas is coming and Mariah Carey's holiday music is playing everywhere I go, I feel like we're together again. Singing the wrong lyrics at the top of our lungs, dancing off beat, grinning ear to ear – living in the moment and feeling completely, utterly uninhibited, knowing everyone around us is smiling too.



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