3.3 Drawing Circles with Cindy Crowe

Today’s episode is a circle of a conversation drawn with the wonderful Cindy Crowe.
I drove out to her home. Which is also home of the Blue Sky Community Healing Centre for this conversation.

Something different This Way Comes

If you are wondering what you can do that will make good things happen, this is the episode for you. That is what this conversation is all about. And I am so glad to bring you this conversation this week.
Because I want this imagining to be as broadly informed and inspiring as I can manage. So welcome to the first of several conversations I will include this season,  with people who I know will stretch our imagining. 

I first met Cindy Crowe about twenty years ago. As co-host for the local CBC radio show with the community events beat, I interviewed her more than once about things she had a hand in, community-building, hope-seeding, healing and truth-seeking things. 

I continue to cherish Cindy’s generous commitment to and work within our community. In fact I just attended a workshop she organized a few weeks ago called Re-Member-ing. Which I highly recommend to anyone and any organization looking to better understand and support truth and reconciliation. 

As we chatted her cats snuggled close - you can hear purring, and cat bells ringing and the occasional sip from our steaming mugs of tea.

Drawing circles, standing strong
Cindy circles, standing strong
Reconciling, and beguiling
Respect, Love and kindness
Respect, love and kindness
Reconciler, standing strong

I asked Cindy Crowe to introduce herself

—--------tape —----------------

Which I will not transcribe but can tell you starts with rooting into a place with attention and intention, to protect and cherish it. Then we roll through: building connection to the duality of life and spirit through awe and gratitude; the key to overcoming unfounded fears is love and unity; when you show respect and love, you receive the same back; lead by example - extend a hand; be kind to each other and love each other; we belong in a circle, everyone equal with no beginning and no end, all bringing value and gifts we should focus on, giving one another the space and time to learn together; we are all connected with the whole, every action reverberates and can change things for the better; we are all vulnerable; we all benefit when we connect with ourselves, like the butterfly effect every kindness reverberates; if people were all loved and respected, and if we gave that same love and respect to the earth, that would change everything - That needs to happen.

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Drawing Circles, standing strong
Cindy Circles, standing strong
Reconciling and beguiling
Respect, love and kindness
Respect, love and kindness
Reconciler standing strong

Cindy Crowe founded and leads the Blue Sky Community Healing Centre in Neebing, just South of Thunder Bay. As well as Cindy Crowe Consulting. And she said that she finds that essential connection, to life, to what really matters. She finds that in music. So today’s song is very much for and about her

But first I need to mention where you can find more - more episodes, all my references, how to sponsor the podcast and sign up for the newsletter. All at www.SomethingDifferentThisWayComes.ca - now here’s your song, hot off the presses

Drawing Circles, standing strong
Cindy Circles, standing strong
Reconciling and beguiling
Respect, love and kindness
Respect, love and kindness
Reconciler standing strong

You are home (circles, circles), 
where you want to be (circles, circles)
You are safe (circles, circles)
and you inspire me (circles, circles)
Lead by example (circles, circles)
Lend a hand (circles, circles)
Everyone equal (circles, circles)
Cherish the land (circles, circles)

Drawing circles, standing strong
Cindy circles, Standing Strong
Reconciling and beguiling
Respect, love and kindness
Respect, love and kindness
Reconciler standing strong

Greet a stranger (circles, circles),
see a brother (circles, circles)
Choose to be kind (circles, circles)
And love one another (circle, circles)
Love a stranger (circles, circles), 
find a brother (circles, circles)
Focus on how we (circles, circles)
gift one another (circles, circles) 

Drawing circles, standing strong
Cindy circles, Standing Strong
Reconciling and beguiling
Respect, love and kindness
Respect, love and kindness
Reconciler standing strong
Reconciler standing strong

That was Drawing Circles  for Cindy Crowe. I’m Heather McLeod. I write and produce, record and edit, publish and promote this podcast. It’s as independent as it gets. Thank you for listening. I’ll be back next week. 

Something Different This Way Comes

Oh but - I spoke at the Unitarian Fellowship this past Sunday.  I was invited as a woman whose Dad and Step-Dad both died recently with dementia  and I think because I participate in the Walk for Altzhiemer’s every year, raising money for the Alzheimer’s society one step at a time. Anyway, I was asked to talk about Dementia and to talk about grief. And thought you might want to hear it too. Here you go:

Every year in May I walk a step for every person living with dementia in Ontario. That’s about 282,000 steps or 214 kilometers. It takes me all month. 282,000 people in Ontario, that’s about one in every fifty of us is diagnosed with dementia. More of us have died with it. And more still will get it

My Dad Norman died of final stage Altzhiemer’s in August 2021.  My step-dad, Michael, the Dad who raised me, died with dementia (though not of it) in June 2020.  Their experiences, how the disease changed their lives, were very different.

Norman’s was quick, from easily masked to final stage in less than two years. And those two years COVID years, living in an high rise condo. My Step-Mom Elaine’s support of him was heroic, and so hard to helplessly witness

Michael’s dementia was very long and very slow, a gradual shift in capacity and habits over decades
in his big rambling country house he left less & less and grew smaller and smaller within. My Mom Fay’s support of him a slow transformation from partner to caregiver

Dementia strikes at a person’s autonomy and the first grief was the angry kind. The negotiate and strategize your way out of this kind of grieving. And that stage of loss is the one that grinds at me the most, like a pebble in my shoe as I take my mindful steps thinking about dementia

My Dads had for decades been more the supporter than the supported, More the income provider than the income seeker, More the list of deeds than the list of needs. Dementia was a spectre of losing that social security, that clear value in our community and it terrified them. They were both smart, articulate, strategic guys. They tried to out smart this. And that more than anything is what breaks my heart.

That and how hard it is to help when dementia progresses to the point that you don’t know what time it is, you can’t filter your feelings or responses, you can’t follow the dance steps of social expectation, and you can’t be trusted to keep yourself safe. Then the isolation of modern life becomes a trap and a tragedy.

And I long for a more connected community, with less walls between us,  because gifting someone with the things they need because of the short-term memory they lack, is not rocket science. It is the simplest of supports, reassurance, direction, kindness. But it requires vigilance, patience and persistence. And a person needs to sleep.

Supporting Norman was epic in that small Toronto condo deep in social isolation lockdown. But most Canadian households now are single people, living alone.

Most supports that can help a family manage, bring in some private care, respite and expertise, counselling for the caregivers, fall outside our public health care, or are insufficient to the need with waiting lists that mean that care is not available when it is needed

That is the gap the Alzheimer’s Society works to fill.

And they made such a difference to my Step-Mom Elaine

Although my Dad got mad at them, because they could not pretend to hope they could find him a cure in time, and instead their programs underlined the implications of his diagnosis. He was going to slip from giver to receiver, and that terrified him

If there is one thing I pray for us to change for the better, it is the insecurity at the root of that terror. Because it is well founded. We have built ourselves a culture in which insecurity is everywhere. We have so much, we are so wealthy in so many ways, but food, shelter, the healthcare we need - these are insecure, making sure that first of all we provide those basics to everyone is not something we value as a society.

And I really, really want to see that change.

So both Norman and Michael went through an angry stage in their dementia. Unreasonable, paranoid, grumpy. And I think it was rooted in their loss of the ability to know social expectations and be confident they could meet them. It was rooted in the insecurity of our society.

And they had so much more security than most of us have.

And that thought breaks my heart.

We are all full of grace. We are valuable and precious not because of what we know or can do or who loves us but because we are. Each of us wellsprings of grace.

Every child matters
Every one of us, matters
All there is to know about us is kind of by the by, the heart of it is, we all matter

And as my Dads lost the filters and agendas that we need short-term memory to manage.
That grace came shining through. They would look up and see me and love would shine out of them on me like a beam of sunlight that fades the day around it. The warmth of that love, of that grace.

Not that it continued for long. Dementia is distraction, by definition. You would travel to spend time and once that beam of welcome was drawn away, I would feel my time was not cherished, connections were not made. 

I was a patient witness, with time to focus on my love for my Dad the essential essence of him. Without his advise, the patterns of how we had come to interact and support one another, all gone. Just a precious soul in a failing body.

Dementia takes away the dance of conversation and routine with which we buttress and bury our relationships. And that is something I grieved. I lost their understanding of me, our shared history, their counsel and just the comforting pattern of how we had always spent out time together.

But not my Dads. Those routines and references they shed like winter clothing as summer rolls in. For a time they tried to hold onto them, and that was hard work that they could manage for shorter and shorter periods and so they would long for visits to end. Which hurt me the visitor, more than it hurt them. They were relieved to shed that expectation of social engagement.

And once the capacity to manage those routines and social expectations was completely lost, it was a lightness, a comfort. They gained clarity and joy. That grace within them shone out easily, often.

It was I who grieved those changes.

Dementia is a long journey with losses, a series of grief that both the person with dementia and those that know and love them walk together at first, but eventually the person with dementia loses their awareness of that risk and loss, and grieves it no more. And it is those who know and love them left to carry that grief, without them.

Much of the grief and burden of dementia is more for those who knew and loved the person  who changes as they lose their short-term memory. Love through sickness and health is a heavy commitment when so little of the relationship, the character, the way of being that you know so well in the person you love, Is lost to dementia.

But love is a powerful thing. It is not a pragmatic choice. It is not actually about all of the things we do in support of it and in service to it. It is purer than that. Love is grace, given and accepted. It is a well-spring within us. And it has no end.

I thought at first that pouring of love, that grace shining out of my Dad’s faces where dementia had removed all those veils and filters, that that was love for me, personally. But then a stranger would step into their space and be gifted with that same bright welcome. And I had to grieve my place in their minds. That had been lost.

But I also came to recognize that that shining love, that was their grace. Their shining, perfect souls reaching out to connect to another soul, recognizing grace in every face. And that was a comfort to me. And a shifting of my understanding of the world.

The weight of societal expectations is heavy on me. Am I doing the right thing, am I a success or a failure, am I worthy. These worries fret at me. Even now at the height of my giving years, in my middle age, a bread-winner, a giver of time, skills and money. Even now I feel the insecurity of feeling my value is measured from the outside in, and that my community is riddled with rifts into which any and all of us could fall if we fail to provide value.

But if we instead consider our connections to one another not as fragile exchanges of giving and receiving, but instead as an honouring of our innate value in and of ourselves.

What a difference that would make.

I think it would lessen the grief and horror of dementia. If we could uncouple it from our social insecurity, and take this unpredictable and long journey through loss without fearing we will lose our place in our community too. That we will become disposable, resented, a burden.

That insecurity is expensive. It hurts.

So as I think about dementia, about Norman and Michael who died with it, and all the many of us now living with it, I wish for us to tackle that insecurity, that willingness to live with the spectre of having-not, and instead focus on our grace.

Every child matters. We are all full of the fire and light of grace, shrouded in social filters and fears but still there, like magma beneath the surface of our rocky, watery planet.

If we shifted our social structures put love and support for all front and centre, no risk of falling out of security for lack of capacity or valued skill, if we took that fear out of our everyday, would that take that terrible, scared anger out of dementia?

Could we love another enough to lose autonomy without fear that becoming a dependant means becoming a burden and a risk?

I think it would make all the difference.

Because once Michael and Norman lost the ability to know that they were becoming dependants, once they relaxed into simply being, they were at peace. Happiness and contentment came easily. It was almost enviable.

I grieve our unkindnesses to one another as much as I grieve my Dads. They were loved, and their gifts to me and to their community live on in us. Their dementia showed me the power and the grace within all of us.  It gave me a chance to grieve deeply over time, one loss then the next.

And leaves me praying for us to honour the essential value of all of us, let go of our ranking and tolerance of insecurity. Fix the social insecurity that so grieved both of my Dads as they lost their social autonomy. invest in that.

If we were all bone-deep confident that we are valued, cherished as souls full of grace everyone of us, no matter where we are in the spectrum of giving and receiving. I think that would take away most of the horror of dementia

So that is the prayer I leave with you today. Judge not, love more. Let that change the world.