Advocating Against My Mother’s Displacement

My mother, Elaine Grant has lived in what is now called Michael Garron Hospital (formerly Toronto East General Hospital) for eight years. The Complex Continuing Care Unit, or “J5” is her home. Approximately two weeks ago everyone on J5 was informed that the unit is to be closed. In other words, all of its residents have to move. We are devastated. My Mom has described the feeling as “living in a nightmare”. I want the hospital’s upper management and the Ministry of Health to hear our story because their decision, which at least appears to be rooted in saving dollars, impacts real people with very complex needs.

My daughter does not remember her Gran being able to walk. She is turning fourteen. This is because in 2004 my Mom had a benign tumour removed from the base of her brainstem. We were warned that this surgery threatened to do what the tumour might if left alone. With time we could see how this warning proved true: Mom lost her gag reflex and so is tube fed, has a tracheotomy so that her lungs can be routinely suctioned, and is paralyzed. Over the years, including as recent as this spring, she has struggled with infection that leads to the need for intensive care and ventilator intervention.

In the letter that we received from the hospital and at a recent family meeting, we were encouraged to consider moving our loved one “into the community”, meaning a home situation supported by CCAC. Hear me when I say, had home care ever been a feasible option, we would have pursued it. However, my Mom’s level of acuity is such that a hospital setting is her only option. Even nursing homes do not offer the care that she requires. And just so you know, my husband’s Multiple Sclerosis is forcing us to equip our house in such a way that will enable us to stay in it for as long as possible. We believe in the value of CCAC.

The move to J5 eight years ago came after a long wait. After two years we were told the waiting list was to be scrapped. This resulted in a letter to our MPP and weekly phone calls to the hospital social worker. At the time we understood the need to close a waiting list. What we could not comprehend was cutting off those who had been patiently and exclusively waiting for a bed at Michael Garron Hospital. You see, my brother and I, along with our families, live around the corner from the hospital. In many ways moving to J5 was a move “into the community” and very much for the mental health of our Mom. And so, we actively chose to fight in a kind and persistent way. With this new situation, we plan to do the same.

Michael Garron Hospital is currently moving a number of fully ventilated patients onto J5 from Sunnybrook Hospital. So in that sense, it is not really closing. There is ample medical evidence that my mother is a patient whose needs match the requirements for hospital care. We know there are facilities across Ontario that provide Complex Continuing Care, but we need to be near her.

Elaine Grant is a woman of compassion and grace. Despite her massive chart, she is an exceptional patient. If she has concerns about her care, she addresses the issues carefully and in writing. I would completely understand if she were to complain about the weight of her challenges, and yet she never does. I am inspired by her. This might not be surprising given that I am her daughter, but if you would like to hear similar sentiments from people maybe more removed, I could provide a very long list of references. The truth is this: my mother is not a nameless, faceless statistic. Elaine Grant is a person with real health vulnerabilities who should not be displaced. She has suffered tremendous loss, but losing her home should not be added to that list.

 

 

 

Polarity Management: Living in the Tension

I was introduced to the idea of polarity management a number of years ago by my husband Dion. The illustration that I see consistently used to define it is this: in order to live we must breathe, but in order to do so we must participate in what are seemingly opposed actions: inhaling AND exhaling. The ‘problem’ of breathing is not solved by doing one or the other. Our lives are full of such quandaries: how do we do manage following rules and experiencing freedom or doing things efficiently and promoting creativity/innovation or (my personal favourite) working and resting?

Last year I started seeing a new therapist who mid-way into our first session said, “I’m going to flag ‘self-care’ as an issue for us to talk about”. Busted. She could see what I knew was true: I have a life full of commitments that could easily turn me into a burnt out mess (my words, not hers). Most of my commitments can’t be said no to and are deeply good. Many of them are blurred across the work/home divide. Desiring to do them well means that I have to manage the tension that exists between them and rest.

Last fall I came up with a list: take a Sabbath every Friday, see my therapist on a regular basis, get massage therapy when possible on my too-stiff shoulders and neck, eat properly, walk and take Zumba classes, meet with a Spiritual Director, make and get to regular Doctor and Dentist appointments, etc. Full disclosure: it kind of irked me and seemed counterintuitive that in order to participate in self-care I had to make a list of things TO DO. The truth is though, however imperfectly I keep it, the list has helped.

It helped me enough to realize that I also needed what I hadn’t added: vacation. Near the end of July both my body and brain were practically begging me to have an extended period of rest. I feel fortunate to be enjoying some serious time off this month with my family. At times it has taken effort to not create more to-do lists. There are moments when, for no apparent reason at all, my stomach feels anxious. Pushing through though has enabled me to experience the stillness that comes with not doing, but being.

Which brings me back to polarity management. I am convinced that enjoying life to its fullest comes with living well in the tension of work and rest. And by work, I don’t exclusively mean the paid kind. We cannot thrive doing only one or the other. I suppose my goal is to move more fluidly between the two. Since I’m putting this out there, maybe you can help hold me to it.

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Remembering Michael McKeown

I remember the first time I met Michael McKeown. I was newly on staff at Sanctuary where part of my role was to be developing a system of structure and accountability known as “contracts” with a small number of people. Greg Paul believed there was a certain person who would be a good first fit and so arranged for us to be introduced. That person was Michael. He shook my hand, poured out some of his story, promised to take me on a adventure and then gave me a hug. He lived up to his promise.

Michael died today. He knew that death was coming close because of cancer and Hep C, things he fought for as long as he could. I don’t know that I’ve known anyone else who embraced the process of dying the way Michael did. In many ways he died the way he lived: with honesty, passion and courage marked with deep pain and longing.

Michael was the first person to sign the guest book at our housewarming party in 2001. He was also the first person to call the hospital after Cate arrived. Michael was a deeply emotional guy most days- that day he couldn’t stop crying as he heard me describe my daughter. I have a stash of presents that he gave me over the years, all signed with his name. There are so many memories similar to these that are percolating up today.

There are difficult memories too. Michael was very open about his demons and how they impacted his life. He struggled with sobriety.I recall desperately difficult conversations with him where I felt entirely over my head and powerless. I watched him put his fists through drywall out of anger. At the end of the day Michael would routinely confess and seek forgiveness in a way that took my breath away. He would publicly wail for God to heal him. His faith was raw and real and regularly contributed to mine becoming more so.

Over the last number of years I didn’t get to see Michael as much as I once did. This was more my fault than his. Whenever we were able to visit it felt like no time had passed. Our last few conversations centred around his desire to be free from pain and full of joy. Today, while the sadness settles in, so does the belief that Michael is finally both those things. Mike- rest in beautiful peace. May all those who knew and loved him find comfort.

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It’s Time to Grow (and Rest)

I’m approaching a time of rest, which I will admit is coming at the right time. I will be taking much of August off. For years I have found planning the summer difficult. Trying to live in the tension of wanting to give Cate a great holiday while needing to continue my commitments at work until having a break myself has been, well, tricky. With this is mind, Joanna and I began planning for the summer at a staff retreat months and months ago. It has also helped that Cate happily spends a couple of weeks at camps she loves and is growing in independence when she’s at home. It is becoming apparent that I am entering a new stage in life- a stage that I am equal parts excited and nervous about.

One of the challenges we face at The Dale when it comes to vacation time is that we are a staff of two. Fortunately Joanna and I are a piece of a much larger community that makes this place work. Core community members and volunteers prepare food, set-up rooms, do dishes, plan music sessions, deescalate tension, etc. As we often say though, a body has many parts, and a necessary part of The Dale is staff. Something we’ve been dreaming about is how to grow this part.

This is where you all come in: we could use your prayer and good thoughts as we consider how to move forward. We, along with our Board of Directors, are thinking through what role this person might fill and how a necessary component will be to raise the funds for their salary. The fundraising piece can sound daunting, but as someone who does just that I know how meaningful it is to have a wide circle of supporters invested in you. Joanna would say the same.

To say I love The Dale is an understatement. I continue to be aware of a deep sense of call to this place and my role in it. When things became dire in 2012 I recall praying for God to light our next steps. My prayer remains the same. If you’ve been following the journey you’ll know that it is a big deal that we are ready to grow into this next stage. In order to be ready for it though, I need to take a break and spend some uninterrupted time with my family. Please do stay tuned.

 

 

A Relationship in Progress

There’s a man, I’ll call him “Bill”, who has hovered close to The Dale for a number of years. We have a complicated relationship. I admit that at first I was rather scared of Bill, an emotion that I don’t regularly feel with people. Most of our earliest encounters involved him being very angry with me because I didn’t have what he needed. I vividly recall holding back tears as I repeatedly explained that The Dale truly had no money to get tokens during the summer we first became under-housed. He wasn’t buying it though.

I have always been amazed that Bill keeps coming back, especially when we’ve told him he needs to take a break and that time has finally passed. He seems to have a love/hate relationship with almost everything we do (something that we’ve talked about me sharing). He hates our food and then he loves it; he can’t stand that we stand up to him and then he respects us for it. Bill can be every season in the space of a single drop-in.

I remember sensing a shift toward friendship when Bill started to tease me and Joanna. He’d see us outside and say, “don’t you girls ever GO HOME? You two are joined at the hip. You need to put your feet up. Have a drink. Rest.” I started to see that in his own way, Bill was often looking out for people, including us. More recently he’s even been able to receive a little teasing back.

Along the way I have learned more about Bill’s past (and he mine) and how it impacts his present. Life has not been easy. What Bill and we humans in general sometimes do is respond to our own pain by making life hard for others. It becomes a vicious cycle that is neither healthy nor good. I’ve learned that The Dale is one of the few places able to push back on this pattern in Bill’s life, while not having to push him entirely away.

We saw Bill today. He was in a pretty good mood, despite being anxious about an upcoming court date that could drastically change his life. On his way out the door he said, “I need something from you”. Never knowing exactly what this might mean, I said “well, you can ask. If I can, I’ll help”.

“I need you to pray for me”.

I promised him that I would. Watching him leave, I felt a wash of gratitude for how far Bill and I/The Dale have come. It has been a journey of very tiny steps forward, still occasionally halted by some big steps back. This work is messy, hard, sometimes scary and in the end…good.

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A Wistful Part of Parenting

I remember holding Cate for the first time. For nine months I talked to my burgeoning belly, imagining what our child might look like and how she would sound. The night before Cate’s birth I decorated our Christmas tree and sang Christmas carols to her. By mid morning the next day, I finally got to look into her eyes, call her by name and say, “I am your Mom”.

I have honestly enjoyed every stage of parenting Cate: her as a newborn, a toddler, a school-aged kid and most recently a pre-teen. I’m not claiming it was all easy. There were of course the inevitable moments of exhaustion and frustration. In the early days she was my constant companion, quite literally attached to my hip. When school began it took some time to convince Cate that she could manage a morning in kindergarten without me. Slowly, and with a great deal of patience we both learned that getting over the threshold of the door was actually the hardest part. Once there, she flourished.

Cate is now a teenager and for the first time I am feeling what I have begun to describe as wistful. I’m enjoying this stage too; I just have a keen awareness that while Cate will always be our little girl, she’s actually now a young woman. Next week we will be attending her grade eight graduation. Every time I think about it I have pictures of little Cate floating through my head.

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While I was pregnant nobody could have prepared me for the reality of motherhood. It wasn’t until I held this tiny person in my arms that it sunk in: this is a human we are responsible for. Sometimes it feels like my heart is walking around on two legs. As Cate begins to make more of her own choices and has all kinds of experiences apart from us this feeling only intensifies. I long to protect her from heartbreak, but know that I can’t. I endeavour to be a mom that is present and she can confide in. I also pray for her incessantly.

It is a joy to watch Cate mature. She is compassionate and articulate. She fiercely loves her friends. She has a beautiful voice and is authentically humble about it. She loves to read and is rejuvenated by hanging out in a bookstore. She is a self-described old soul, while at the same time content to be her age. She is claiming for herself the same faith we hold. And so while I am admittedly wistful, I am even more proud. Cate, I love you and will always be your mom.

 

In this Moment, I Choose to Abide

I am writing for the first time in weeks from a chair on the back deck of our house. My ankle is elevated because I managed to badly sprain it while walking to see my Mom in the Intensive Care Unit, where she has been since Saturday. I am missing a funeral today because of all this, while planning another for next week. Between my injury, Dion’s MS and Cate being away, our household is a bit of a comedy of errors. The beat shall we say, goes on.

The sun is shining right now. There’s a nice breeze too. I close my eyes and try to listen: to the birds, the squirrels running along the fence, the children playing in the schoolyard across the street, the breeze, the neighbours discussing their garden and the hum of a lawn mower. Since my childhood I have loved the smell of freshly mown grass and its scent is strong right now. I am trying to be aware of this moment.

In this moment I am also thinking of my Mom as she works to recover after another infection; of Dion as he checks out an accessible van that we need to buy; of Michael “Grumpy” Graham who died on Victoria Day; of the many people gathered at today’s memorial service for another friend tragically lost too soon; of Cate on her grade eight trip, wistfully aware of how quickly she is growing up. I am aware that my emotions are intertwined with so many things that are happening outside of my control.

I have been encouraged recently to consider what it means to abide, especially in the context of my faith. Abide means to: accept or bear; to stay or live somewhere; to remain or continue. I am invited to discover that as I abide in Christ, Christ abides in me. Any ability to accept and bear the challenges I’ve described above comes from strength that is absolutely not my own. As I rest into, or abide in the love of God, I am reminded that I am not alone.

So today as I listen to my surroundings and think about the oh so many things that I can’t change or fix, I also choose to abide.

The Valley of Vision

Right now a long-time friend from Parkdale lays in an ICU, his fate uncertain. Joanna and I went to see him yesterday. Though we don’t know if he was aware of us, we spoke to him, touched his head and arms and prayed.

We also went to visit someone who’s little apartment had become disastrous. Without the freedom of mobility, it is becoming near impossible for our friend to manage the space. We cleaned up what we could, feeling limited in our capacity to help as much as we’d like.

There is a story in the Toronto Star today about a man who was found murdered in the downtown core. We knew him. Knowing how deeply impacted our friends at Sanctuary are by this loss, we decided to head there after our morning drop-in. The grief is raw and heavy.

I find myself thinking of a poem I believe was written by the Puritans around the time of World War 1. I don’t always understand or like the paradox this piece of writing describes, but I believe it to be true. As I linger in the valley I discover that blessing is indeed housed here, the kind that Jesus describes in His Sermon on the Mount where he begins, “Blessed are the poor in spirit…”

The Valley of Vision

Lord, High and Holy, Meek and Lowly,
You have brought me to the valley of vision,
where I live in the depths but see you in the heights;
hemmed in by mountains of sin I behold your glory.

Let me learn by paradox that the way down is the way up,
that to be low is to be high,
that the broken heart is the healed heart,
that the contrite spirit is the rejoicing spirit,
that the repenting soul is the victorious soul,
that to have nothing is to possess all,
that to bear the cross is to wear the crown,
that to give is to receive,
that the valley is the place of vision.

Lord, in the daytime stars can be seen from deepest wells,
and the deeper the wells the brighter your stars shine;

Let me find your light in my darkness,
your life in my death,
your joy in my sorrow,
your grace in my sin,
your riches in my poverty,
your glory in my valley.

The Day the Fridge Died

Cate went to get a popsicle as an after-school snack and discovered pools of former frozen treats. Not a good sign. The freezer was blowing warm air, though things in the fridge still seemed cool. We decided to hope that it would be an easy fix.

I wasn’t around when the repair-person showed up, but this is what was recounted to me: he charged $100 to show up, pull out the fridge and diagnose it as unfixable, though if we left it unplugged for a few hours maybe it would “reboot”. I wasn’t optimistic (which is unusual for me), but agreed to try.

In the meantime I had to get rid of all our food. We managed to save some meat by giving it to a neighbour earlier, but otherwise things had already gone bad. Relative to the time our chest freezer died this cleanup was manageable, though it still wasn’t fun. I will confess that I became irritable in the process, frustrated with the overflowing compost bin and the amount of work it took to make the kitchen smell good again.

That “reboot” option? It didn’t work. We have purchased a new fridge that isn’t being delivered until tomorrow. Our old fridge died last Wednesday. That’s over a week to be regularly reminded of how I take having a working fridge for granted. Fortunately a friend loaned us the use of a tiny bar fridge the other day, so we have a bit of milk, some fruit and a place to stash our take-out leftovers.

I keep silently promising myself that I will learn to really appreciate the new fridge. I know so many people who can only dream about having one, or who might even have one, but are without the means to fill it with food. I realize that being able to cook for my family is a large part of home making for me. The creation of “home” happens in a variety of ways, not least of which is around a table full of food. I don’t want to forget this.

 

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Inspired to Choose Gratitude

One of the things that I am consistently blown away by is the capacity of some of my most marginalized friends to find little bits of gratitude in their lives. One such friend emphatically thanked God for the bit of decorative paper she found on the street to adorn a lamp. Another declared how grateful he was to have enough change to buy a present for a family member, even though he really needed a bar of soap.

I’ve written a fair amount about the various struggles I am a part of lately: Dion’s health and the numerous deaths at The Dale to name two. I am inspired by my Dale friends to really look beyond whatever challenges I might experience and discover beauty, in even the smallest of places. The following is far from an exhaustive list. As I began to contemplate what I am grateful for I realized that I could go on and on. Here’s my start:

  1. The hat that we use as an offering plate on Sundays at The Dale. We pass it so that people can even just touch it in acknowledgement of whatever they have to give, money or otherwise.
  2. Being able to watch so many interesting, talented, considerate kids in my neighbourhood grow into interesting, talented, considerate young adults.
  3. The buds on trees.
  4. The fact that Cate likes to listen to vinyl records in her room.
  5. Hugs. Period.
  6. Family.
  7. Dion finally getting an appointment with one of his MS doctors for important follow-up.
  8. For the way dancing in The Dale kitchen never gets old, especially to Ben E King’s Stand By Me.
  9. Having friends who are like family that we share dinner with every Wednesday night.
  10. The chance to talk with my Mom.
  11. Still having meals in our freezer that our community made when Dion was in hospital.
  12. The way my coffee maker sounds in the morning.
  13. Mail that isn’t bills.
  14. Friends who listen and who let me listen to them.
  15. That Joanna and I are welcome to sit for hours at the same coffee shop every Tuesday for our staff meeting.
  16. Second Harvest.
  17. That I get to be an Auntie.
  18. For the way The Dale is a community run by the community.

“Gratitude goes beyond the ‘mine’ and ‘thine’ and claims the truth that all of life is a pure gift. In the past I always thought of gratitude as a spontaneous response to the awareness of gifts received, but now I realize that gratitude can also be lived as a discipline. The discipline of gratitude is the explicit effort to acknowledge that all I am and have is given to me as a gift of love, a gift to be celebrated with joy.” Henri Nouwen