Special Needs

“Hudson, look up,” I said, careful not to point. “Look up at that person on the far right.”

We were sitting on the window ledge that framed the swimming pool watching six-year-old Ethan challenge his teenage swim instructor with that giant sh—-eating grin that makes us all laugh when we know we shouldn’t.

I watched Hudson look up, smile and then turn back to watch his brother’s antics in the pool, anxious to swim himself while we waited for the free swim to start after lessons.

The small square tiles were cold and hard sending chills right through my bony butt but all that melted away as I stared, mesmerized.

Through the inside windows of the pool’s second story was a row of treadmills positioned so those disciplined souls had an outside view. There was a mix of fit and sweaty older men and women, most with headphones that framed their blotchy red faces, all walking or running with methodical unbroken strides to some silent rhythm.

By contrast, on the far right, was an exercise oxymoron. Joy on a treadmill.

A middle-aged woman dressed in a stylish form-fitting outfit, complete with headphones, wasn’t marching to just any old beat. Nope. She was dancing as if the music was inside her, as if the treadmill was a stage that showcased her every move as she boogied smoothly to the beat and sang along…or at least mouthed the words. That it was soundproof didn’t matter, I could hear by watching. Her hips sashayed back and forth and she, with index fingers pointed, moved her hands from side to side as if she were the queen of hip-hop. She raised her arms above her head for one riff then just as quickly moved them down into a brisk strut with other rhythmic hand gestures. Then she turned sideways without missing a beat, moving one leg to the other in short steps, arms all over. Man, she had style. Her face suddenly went sullen, almost angry with eyes closed to leering slits, which emphasized an exaggerated pouty expression for what I guessed were serious perhaps dangerous lyrics that required swagger then just as suddenly softened into a wide smile and laughter as the track obviously changed.

I was mesmerized. Joy will do that and this was complete, unaffected, enviable joy.

When the pool supervisor, a lovely young woman whose charismatic yet gentle authoritative smile keeps even Ethan in tow, walked by, I stopped her and said, “I don’t mean to sound like a gossip but look up at the far right treadmill. If that isn’t the most wonderful thing…”

She looked up and turned back smiling, “Oh yes, she is wonderful. She’s a regular here and no matter what she’s doing, treadmill, other equipment, she dances and sings all the time. She has special needs. We all love her.”

I looked back up and saw her now facing backwards and dancing just as gracefully on a downhill slant.

Special was an understatement. She was the embodiment of dance like no one is watching; sing as if you’re alone.

I woke up this morning thinking about yesterday’s swim when my phone’s calendar dinged a birthday reminder. Kathy’s birthday.

Ten years ago I lost my sister to an unforgiving cancer just a few months after I had moved to a new and unknown place to restart my life and rekindle my career. In the short month’s before Helen’s death I made several remarkable friends. I say remarkable, not to overuse the adjective but because they were. I was the new boss in town and they didn’t know me from Adam yet they gave me tender support without my asking. Dark times make for difficult recoveries but they quietly shone their light. They still do.

Kathy, the sister of one of those dear friends, Reg, was diagnosed with cancer a year later. Turnabout is not fair play. Reg fast became a friend and confidant, a loyal coworker who would have kicked anyone’s ass if they harmed our newspapers or me. Fierce in a way I had not before encountered, I watched her meet and fall in love with her soul mate and then watched them wrestle with Kathy’s unjust fate together.

Kathy was older than Reg and lived in her own home. She was special needs due to an intellectual disability but capable of managing a full and independent life under Reg’s watchful eye. She was fierce like her little sister…or perhaps it was the other way around…and refused, until she could no longer manage, to leave her home. That move took her to palliative care in Hospice Niagara, which, I quickly learned is less a hospice and more a house of angels.

Back then I had some latitude to let people miss work when personal needs overwhelmed their norm. While still managing their responsibilities, Reg and Lydia never let a day or night go by without one of them by Kathy’s side. I had not yet met her but while they first guarded her care, I watched their hearts break and fatigue overtake them as they pressed on without complaint knowing the sad reality of hospice is that the remaining days are precious and few.

Except for Kathy.

A month later, Reg and Lydia’s stamina was threadbare. Despite repeated offers to help; until then they had insisted they were fine. But they were sinking and I finally forced myself on them and asked, “ What shift can I take to be with Kathy so you can go home and rest?”

I knew how deeply tired Reg was when she said to come over, “I’ll introduce you”.

“Hi Kathy, I’m Judy,” I said as I walked towards her bed. Pillows propped her up on her elevated hospital bed. The TV, mounted high on the wall at the foot of the bed, was on. Taped to the walls were drawings Kathy had done, colourful depictions of people and places rich in primary colours reminiscent of Maud Lewis’ naïf masterpieces.

Pale and gaunt, she looked suspicious, unsure of me and why I was there. I blabbed away hoping she’d become comfortable and asked her if it would be alright if I stayed a while. I was looking to make new friends, and Reg had told me so many wonderful things about her. Her eyes lit up—she could change expressions in a heartbeat—and looked more relaxed as she nodded.

“Okay, Reg?” I asked, turning to my friend. She smiled. “Go home and rest.”

When we were alone I asked Kathy about her favourite shows.

“Reg made a list of the shows I like and what channel they’ll be on,” she said showing me the chart. Vintage Reg. “I love movies and that show, what’s it called, oh, I know, The Wheel. It comes on at seven.”

“Oh Kathy,” I said, smiling at her, “my Mum loved Wheel of Fortune. When she was old she started losing her eyesight and would sit in her spot at the dining room table and use her binoculars to watch the TV across the room.”

She laughed with me at the ridiculous but true image. But it was Elvis—the King— that really solidified our budding friendship. She loved Elvis as much as anyone could love a star. I told her she was just like my sister who had been an equally big Elvis fan. I told her Helen and I crammed into the back of a Volkswagen Beetle from where I saw my first drive-in movie, Jailhouse Rock. She thought that was fabulous. Me too.

But she was sad, she said, because she couldn’t listen to him anymore and that wasn’t nice.

I visited Kathy often losing a bit of my heart to her each time. Most times I’d go home after a visit with a precious drawing in hand. She did that for many…the nurses who adored her, for family and friends.

As the days went by she showed little sign of deteriorating. When she hurt she’d say I hurt in her straightforward, unfiltered way but she didn’t complain. She had enormous faith and, it seemed, very little fear. I’ve thought about that often since meeting her, wondering if the fear of death is a learned thing and true faith in God, at its root, is intuitive. She was raised Catholic and was familiar with those rites and rituals but I think the root of her faith was about God. Full stop.

I told her my brother was an Anglican Bishop and she thought that was important. One day, I asked her if she’d like to meet him over the phone and she said yes. My brother is my hero, my high-water mark for overcoming pain and fear and being present in life to be of service to others. I thought introducing them, an innocent in pure faith and a man of equal faith and service, would mean something to them both.

“Hi Kathy,” he said over my cell’s speakerphone. “I’m very happy to meet you.”

Her giant smile took over her entire face, even when just beneath the surface, I knew she suffered from terrible pain.

“Would you like to pray?” asked George.

“I would,” came her crisp reply.

We bowed our heads when George began but I snuck a peak and watched her squish her eyes shut with great effort as if to allow the brief blessing to wash over her. At the end, he paused to close and was joined by Kathy’s resounding Amen. Pure faith.

A few days later Reg called and with haunting sadness told me Kathy was not expected to stay with us much longer. Hours maybe.

Distraught, something close to panic overcame me. One singular thought pushed me out the door.

She hadn’t heard Elvis.

I ran from my office to my car and sped to the nearest store I thought might help me. Future Shop folks laughed when I asked if they had a portable CD player and Elvis CDs so I ran full speed down the mall, high heels be damned, to Zellers and their electronics department, which was located at the back of the store. By the time I got there, my lungs burned through my chest and my heart pounded so hard I was sure my coat and purse strap pulsated. A young girl came over to ask me if she could help. I blurted out, “My friend is dying and she has to hear Elvis,” as tears rolled down my cheeks. Yup, right in Zellers.

It is with significant gratitude that I remember that young woman who quickly found the last portable CD player, the brightest pink imaginable, and found Elvis’ greatest hits and sent me on my next mad dash to the cash, my car, and to Hospice…where Kathy greeted me again with that big grin that hijacked her otherwise pale complexion. False alarm. She beat the odds of that particular moment.”

“I don’t know, Judy, she keeps coming back from the precipice. It’s the most incredible thing,” said Reg quietly in the hallway.

“It’s like a miracle, really,” I said, somewhat recovered from my Elvis dash.

I will never forget Kathy’s face as I placed the earbuds gently in her ears that same afternoon—fearful at first, uncertain of what I was doing, me saying, just wait, it’s a surprise, it’s okay, trust me, just listen, and then with those same tightly-closed eyes she waited until the music…and Elvis… found her. Then her smile, oh, her smile.

Moments later she was belting out melodies as if no one were listening. Amen.

Inevitably Kathy spiraled down again a month later. She was now into her third month at Hospice demonstrating to all the power of fearlessness and faith when Reg called to tell me it was time. I rushed to Hospice where Kathy lay still on her bed, eyes closed, unaware that anyone was there. Reg and Lydia stepped out for a brief moment while I sat. I phoned George to tell him and he offered a prayer, which I put on speakerphone to bring her comfort in hopes she might hear.

His blessing was beautiful and as he finished and said his Amen, without any warning Kathy raised her head right off the pillow and shouted out “Amen” and woke to spend another moment, albeit a brief few days, with those who loved her.

She passed away after 134 days in Hospice with Reg and Lydia by her side. They never left her. She was a fierce and gentle innocent who danced through life like no one was watching and sang out loud without a care.

My phone dinged again returning me to the day. Something else, unimportant, but it reminded me to text Reg.

A birthday forever in my heart, I texted.

Thanks for remembering her Judy. I miss her, came the quick reply.

Kathy was in my life but for a moment but she, like the treadmill goddess yesterday, reminded me to see the beauty in simple colours, to sing and dance with abandon and let joy flow. Above all else though, they taught me to see the special that comes before the need.

 

 

 

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