Sunday, September 9, 2007

Rita and friends

This summer Janet turned 60. This is a big birthday for anyone, but for someone with Down Syndrome, already showing signs of Alzheimer's and other age-related health issues, and who has to date buried three close friends who also had Down Syndrome and who all died long before making it to 61, well, the significance of this milestone cannot be overstated. Add to that the fact that Janet begins counting down for her July birthday sometime in early August the preceding year and you get a sense of the level of enthusiasm we are dealing with!

Among the myriad of ways Janet celebrated her birthday this year was one particularly special event. Thanks to her friend Mary (it's good to have connections!) Janet and 10 of her closest friends were invited to Big Pond, Cape Breton, for lunch at Rita MacNeil's Tearoom. Now, the biscuits alone at Rita's Tearoom are sufficient to warrant a certain amount of eager anticipation. But Janet was not invited just for the biscuits. Janet was invited for lunch with the star of the show, Cape Breton's superstar, Rita MacNeil herself.

Like many people I know with Down Syndrome, Janet is a Rita MacNeil uber-fan. Her CD collection includes all Rita's titles, her wardrobe has Rita T-shirts in the double digits, the walls of her room are plastered with pictures of the Cape Breton singing sensation, and at any opportunity for a performance, Janet will find the closest thing to a microphone (a ladle, a rolling pin, a twig) and belt out "Working Man" with unequaled passion and gusto. Janet and I were fortunate enough to live together during the run of Rita's Friday night CBC TV variety show, "Rita and Friends". Friday nights from 8-9pm were sacrosanct. We gathered around the TV in the basement, popcorn at the ready, listening to Rita's powerful singing and sweet, self-conscious banter with hushed reverence.

And now a "private audience" with Rita. Amazing.

I was touched to be invited by Janet to join her for this lunchtime event. Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in and stealing Janet's peace, her humour, her independence, her ability to enjoy life. Intense emotion can overwhelm her, and this day would surely be filled with that. Having to keep to a rigid schedule, once something she demanded and loved, can now leave her in tears. So we crossed our fingers, surrounded Janet with people she knows and who know her, and off we went.

The brilliant sun over the blue waters of the Bras d'Or as we drove through Eskasoni and East Bay seemed to be a good omen. We arrived at the Tearoom in good spirits, having sung along with Rita on the CD player the whole drive down. With a friend on each arm, Janet plodded up the ramp into the Tearoom and we presented ourselves to the waitress. There was a little confusion about who we were and when we were expected, so we wandered around as we waited for things to be sorted out.

Before long, Janet caught sight of Rita. She squinted up her eyes, as she often does to help her focus, and tilted her head slightly to one side as she worked to connect what she must have imagined was a mirage with what evidently was becoming a reality. As everything clicked into place, she quietly, and with a sense of disbelief and wonder, exclaimed, "Rita!" In a manner fitting her age and the occasion, Janet slowly walked toward her idol, looked closely into Rita's face to make sure she wasn't dreaming, then gently wrapped her arms around Rita's shoulders, placed her head on Rita's chest, and smiled. This smile did not dim or fade once during the two hours we spent with Rita at lunch!

And the lunch was lovely. Rita was an absolute gem, making small talk with our strange crew of friends. She had no trouble joining in Janet's typical teasing - "chicken legs", "old hen", "you're cracking up". Although Janet simply would not stand for anyone to call Rita an old hen!

Several times during lunch, Janet would gaze at the photo of Rita on the CD she clutched in her hand (a CD, incidentally, that Rita had given her, signed, as a birthday gift) and then look up at Rita, in the flesh, sitting right next to her at the table. This seemed to be a wonder that Janet could barely comprehend. And then she would tune into the music coming over the speakers, which was (of course) Rita MacNeil. She would look up at the speakers, at her CD, then again toward her host, in absolute amazement. This woman was even more incredible that Janet had imagined!

After a delicious lunch (which Rita graciously looked after - her treat) and what seemed like endless hugs, we prepared to leave. I linked Janet over to the guest book, where her shaking hand and deteriorating vision made it virtually impossible for her to write much. But she did her best, telling me she had written her name and "I love you, Rita." And on that note, we left to drive home.

I believe that we discover what is holy, sacred, mysterious, through our relationships with others, and those few hours with Janet were filled with holiness and mystery - and not just the mystery of how Rita could be sitting at our table and singing on the PA at the same time! But that visit to the Tearoom with Janet brought me back to what is means to live a life of gratitude, to be present to each moment, to embrace my own vulnerability and allow it to bring me closer to others instead of isolate me from them. And it opened me yet again to the gift of the life of a little woman who has, in ordinary ways, helped to make my life extraordinary. Thank you, Janet.


Dave Hingsburger said...

An absolutely beautiful story, thankyou for telling it so well. I've seen Rita in concert several times and it's good to know that she is as real in person as she is on stage.

Unknown said...

Wonderful story - thank you for sharing.

Lucy said...
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