Rays of light piercing the darkness of social media

An inspirational woman who tells ‘the good, the bad, and the ugly’ about her life

Soft-spoken and articulate, she talks about how she’s feeling, how her day is going. She doesn’t sugar-coat anything but trends towards the positive. Sometimes she’s down, and it shows.

“This is a new day, and it’s full of possibilities.” — Janice Swink

Every day, Janice Swink welcomes visitors into her homey dining room in Louisville, Kentucky.

I visit her most mornings. She’s usually sitting at the table, her hands resting on the rattan placemat that protects her red-checkered tablecloth. Her coffee mugs are emblazoned with inspirational sayings or words that remind her of who she is, like “Mama,” “Courage,” “Still here, still strong,” and “Good morning, gorgeous!”

The T-shirts she wears are similarly themed, though she clearly has a thing for Winnie the Pooh.

Sometimes, when she goes shopping, she’ll add a feather boa and funky sunglasses to complete her outfit as she pushes her trusty purple walker through the aisles, bopping along to the piped-in music.

Soft-spoken and articulate, she talks about how she’s feeling, how her day is going. She doesn’t sugarcoat anything but trends towards the positive. Sometimes she’s down, and it shows.

I get to see Janice through her videos on Twitter (@Janiceswink) and Facebook. Her husband, Eric Swink, is her Rock of Gibraltar and the person behind the camera.

They are both advocates for people living with dementia.

'LIKE I'M BEING ROBBED'

Janice was diagnosed in 2015 with early onset frontotemporal dementia. She was 63 and had been experiencing intermittent symptoms for a few years.

That diagnosis has since been changed to Alzheimer’s disease, with possible Lewy body dementia as well.

Whichever form of dementia — or combination thereof — it happens to be, the diagnosis is terminal.

“It’s like I’m being robbed,” she said last week of how she’s losing her independence.

She and Eric were married in September 2011 after meeting online. He has adopted her two children — now adults — both of whom have special needs. He takes care of them and Janice, as well as her brother, who has vascular dementia.

Eric has said he would have married Janice even if he had known up front about the medical challenges they would face together.

INSPIRATIONAL

In an era when social media is often an instrument for spreading hate, launching personal attacks and sowing dissension, their loving relationship is an inspiration.

But what is even more inspiring is their decision to share their experience with dementia every day and, most importantly, to let Janice tell her own story.

A diagnosis of Alzheimer’s is often received with shock and denial.

And there is a stigma attached to dementia even now, after all we have learned. Society still uses expressions like, “She’s not in her right mind.” “He doesn’t know what he’s saying.” “They don’t even know where they are.”

It’s sometimes cast as a pitiful personal frailty or an expected part of aging, rather than as the terminal disease it is.

'THE GOOD, THE BAD AND THE UGLY'

Janice Swink gives Alzheimer’s a face and a voice.

She confronts her diagnosis every day and offers comfort to others, despite her own fears.

Amid light banter with her husband about the family pets, shopping trips, or Fred, the vociferous rooster next store, Janice expresses concerns and offers insights about her diminishing capacity.

She worries that she is asking too much of Eric now that she can’t always make decisions on her own.

She realizes that, more and more often, he has to help her get dressed. She is having trouble with balance and sometimes experiences hallucinations.

“We show you the good, the bad and the ugly with living with this,” she says.

Through it all, Janice’s unique voice rings through, as she takes us into her home and on a very personal journey — one that’s leading to a destination she never wants to reach.

She has dementia; she is not diminished. She is a kind and loving human being who finds joy in her family and her favourite music and takes strength from her faith and her ever-widening circle of friends.

Each day, she ends their video with a shy smile and a benediction.

“I hope everyone has a good day, and I love y’all.”

Right back at you, Janice.