by Rosemary Gray-Snelgrove
This is a kind of eulogy for a woman named Barbara: not a full expression about what I think her life offers for reflection, but an effort to bring to you a glimpse of a remarkable person, as much as I knew her. It’s also about how two people were enriched by a friendship that developed in the extreme conditions during years leading up to Barbara’s death. Barbara carried the gene for Huntington’s Disease and the illness became active when she was in her early thirties. When her tremors were becoming severe, she entered another phase of life, leaving behind what she had known up until then. She tried to live independently. She made use of various drop-ins and shelters, and became a favourite of the St. Peter’s (now First Interfaith) Out of the Cold in downtown Toronto. For some years she could manage to move about the City, eventually with a walker, using the TTC. A time came when she couldn’t do that, and she was hospitalized in a long-term care facility – which she hated. She successfully ‘escaped’ a few times, in a wheelchair that she would ride down a busy street, bent for action. She had friends among street people. She was kind and generous with them, sharing whatever she had. (Over ten years since she was among them, some Out of the Cold guests remembered her when she was mentioned at this season’s opening dinner.)
I visited her somewhat irregularly, though I was able to arrange and accompany her on wheelchair-ambulance trips to Out of the Cold so she could meet friends. However, as she was increasingly less able to move and communicate, other visitors to her room were uncommon.
That’s when Robin, an Out of the Cold volunteer, made a decision and began to visit Barbara on a regular basis. For the past eight or nine years, Robin maintained that commitment, one that took her weekly to a hospital across the City from where she lived. She and Barbara became friends. Robin grieves for her at this time.
This poem is written about Barbara and Robin, and about the extraordinary circumstances of their relationship.
Not an easy person
but a beautiful one
Not a favourite of her caregivers
unless you noticed
how tenderly they cared for her.
Not a peaceful face –
she well knew anger.
But when she could smile?
Light then shone.
Body immobilized, her eyes looked out;
with skin smooth as a child’s.
If you were looking for more?
Long-suffering, determination, endurance,
wrapped in a powerful life-force
Here was the loveliness of Barb.
I believe in a loving holy spirit,
In us, between us, beyond us.
There is no God who would inflict
such cruel cruel punishment.
It was not punishment.
It was disease.
The scourge of earthlings.
All she could do was live it.
Except, amidst its ravages
she accomplished the extraordinary.
With resources destroyed,
only herself on offer,
she engaged in a great friendship.
She gave and received love
The love of a similarly determined woman
who journeyed in perseverance
to her hospital bedside.
No motive, no agency, no agenda,
other than deep sympathy
for someone so afflicted,
who in a wild and crazy way
had a blazing hold on life.
Robin brought humour, diversion,
a breath of the outside,
textures and scents
and soothing attentiveness.
Week by week, year by year,
They participated in trust and respect
that grew until the end.
Barbara held to herself, undisclosed,
decades of embrace within a previous world,
She had been Mother, wife, sister, cousin, friend.
As she was rendered silent
Did she visit her children in dreams?
She also shared another narrower world
with those of her blood and bone:
A membership whose mark was the gene
that had taken her mother
and that was advancing
in her second child.
Depths of anguish without comfort –
was this as great a burden
as a body abandoning her?
A tiny miracle allowed these worlds
four days before the end.
Robin and Barbara’s eldest son
met at the hospital
Hence, funeral rites
could, days later, bring into the same room
The saddened people of the decades
of Barbara’s ‘before’ life,
those journeying with her
in the seventeen years lost to family.
Tears and stories
opened minds and hearts
to each other.
Consolation? A small mending
of so much that was broken?
Why not see it in that light?
Yet, not to forget the young son
whose long journey has only begun.