When my daughter Cate was a toddler, she would routinely remind me to not “forget my imagination” when we were leaving the house. I remember the first time she said it. I was rushing around, going through my list of things we would might need, like snacks, water, and wipes. She looked up at me, touched my hand, and out spilled those timely words. According to Cate, the day would not be complete without some creativity.
As we enter another year, I have been reflecting on her three-year-old wisdom. I, like everyone else I know, has Covid fatigue. If I never have to see another rapid test, I will be a happy person. The inner-city front line has been a challenging place to be for the last two years. As a community we have felt on guard as the police drive by to monitor our meals-to-go. People with no home have been told to “stay home” and that repeatedly washing their hands is necessary, even though no public washrooms are available. One day the staff team was able to access our old Monday drop-in space and it was like a time capsule. Things were exactly as we left them in March 2020. As we surveyed the room, we couldn’t help but think of all the people we’ve lost over the pandemic and would never sit at one of the tables again. Given all the challenge, how do we not forget our imagination?
For me, I am noticing a longing to use the strange space created by Covid for exploring and nurturing ideas. At The Dale we are planning ways to celebrate our ten year mark, I am getting ready to record some songs with a long-time friend and musician from Sanctuary- an offering that we hope will benefit both of our communities, we are finding new streams of funding and listening for ways to become more deeply engaged with other organizations, and we would like to gather stories and art from community members for the building of a book.
I don’t know where this will all go (which is true of life in general), but I’m trying not to worry about that right now and enjoy the process. It’s not that the weariness has left, or that injustice has ceased to be. The tears come with frequency. Somehow though there is a renewed desire to experience the refreshment and excitement of generating new things. Beautiful things do come out of the dust. When I leave the house tomorrow, I will do my best to not forget my imagination.
It’s nearly January 15th, which for most means the middle of the month. For me, it is the day my mom sprung into the world. Elaine Clare Grant, nee Muirhead was a jewel. I have missed her since the moment she left in 2017. When I was preparing to speak at her funeral, I remember thinking, how do I capture a life in a speech that will last just a few minutes, especially when that life belonged to your mother? Knowing that was, and continues to be impossible, I still love to share parts of my mom’s life and hope it honours her.
Elaine was born to William and Helen on January 15, 1947 in Sudbury, Ontario. She was the first of four girls, to be joined by Linda, Susan, and Laurie. Mom always described her home as a happy one. Her parents carried themselves with a calm that was striking. That same calm has also always been evident in the girls, oftentimes referred to as the “Muirhead glow”.
I have vivid memories of my Grandparents house on Roderick Crescent, located right by the shore of Lake Ramsey. Mom loved being from Northern Ontario. I remember her teaching us to dive off the point and swim deep so that we could grab handfuls of clay from the bottom of the lake. We made countless little pots out of that clay, some of which she sentimentally kept. Mom never tired of the northern landscape: the ruggedness, the birch trees, the sprinkling of blueberries, and the water.
Mom’s parents later built a cottage (though we always called it the camp) in Killarney. They also had a boat they kept across the channel in town, called the ELLSMUIR, a clever moniker that incorporated the initials of each girl and the first syllable of their last name. Every summer we would gather as a family there to spend countless hours in the water, read multiple books, and share meals. The big treat was to have Fish and Chips on the dock in town, and if we were lucky, ice cream cones after. Mom loved the laughter that accompanied those times together. She had a great laugh.
Always an artist, mom decided to study at what was then known as the Ontario College of Art in the 60’s. She studied material arts, a program she chose because she wanted to play with different media. It was at the OCA that she met my dad, Barry Grant, an aspiring interior designer. One of mom’s first jobs out of school was designing fabric for bathing suits. She went on to do a variety of things throughout her career: hand charting at the Bank of Nova Scotia, pen and ink renderings of homes, making jewellery, painting and firing porcelain, and in her later years, drawing with her remaining ‘one good finger’ on her iPad.
It was in 1969 that Elaine and Barry got married. I then came along, followed by Logan. Some years later our parents made the difficult decision to divorce. While this impacted all of us in a variety of ways, it was always clear that the two of them endeavoured to make their parting as good as possible. We lived with our mom and saw our dad frequently. I know that until his death in 2008, dad sought to take care of all three of us in the best way he could.
It was in the early 80’s that my mom came to know Jesus. She often described the experience as one where she moved from darkness to light. Mom’s faith became central to everything she did and it showed. We joined Grace and Peace, a little church that proved foundational to our family. There we were surrounded by a group of friends who nurtured our faith and became our circle of support. Subsequent church families also had a deep impact, all of which helped us understand the power of community.
The kind of home my mother created was warm, inviting, and safe. Our house was always filled with a mixture of antiques, family heirlooms and what mom affectionately called her “meaningful piles”. She would occasionally try to go through those piles, usually only successfully making different ones. We could easily put our feet up and feel comfortable, as could anyone visiting. I know it was a struggle for mom to balance her desire to be a homemaker, along with life as a single working mother, but she never seemed to complain. She did all of it with a serious amount of grace.
Mom loved food and could easily sit around a table for hours. She was the slowest eater I have ever known, preferring to savour every bite and bit of conversation over having a hot meal. She liked to cook, though didn’t fancy herself a gourmet- we ate a lot of what she called “cheesy macaroni” (I’m sure she would use an entire very large block of cheese). She often joked about how the picture of her displaying a pie was necessary because it was possibly the only one she ever made. For our family Christmas dinner, she would be delegated the job of preparing potatoes and inevitably peeled 20+ pounds of them, fearing there wouldn’t be enough. There were ALWAYS leftovers. When she lost her ability to eat food through her mouth, mom sought to maintain a connection to food, primarily via the Food Network (she would often call to rhyme off a recipe she thought I should try) and what we came to call her “aroma buffet”, a plate full of food that we would pass right under her nose (which always amazed me).
In 2004, after a few years of declining health, my mother agreed to have surgery to remove a brain tumour that was both benign and wrapped around the base of her brain stem, though there were massive risks involved in such an invasive procedure. Mom slept at our house the night before so we could get up together and leave for the hospital at a very early hour. I was with her right until they took her into the operating room, even helping the doctors with prep by being the one to shave the back of her head. Then I joined other family members and friends in the waiting room.
I had a hard time sitting still that day. I remember excusing myself for a brief walk through the halls. I found a quiet spot, leaned against a wall, and through a barrage of tears began to repeatedly pray Psalm 23, a passage my mom often turned to: “Yea, though I walk through the valley of the shadow of death, I will fear no evil…The Lord IS my shepherd.” My mom survived that surgery. The valleys frequently returned in subsequent years: her journey was marked with paralysis, infections and near death experiences in the ICU. Somehow all along she held fast to the Shepherd and made her home with Him. Though she lost much and certainly grieved, my mom refused to define herself as a “sufferer”. She was known for her patience, hope, love and joy, something her care-team at the hospital always noticed.
On the Friday night of the May long weekend in 2017 we received a call that Mom was not doing well. Logan and I walked together to be with her, thankful yet again to both live so close. The next day we were told to gather family and friends. So many of us were able to spend time with her throughout the weekend, taking turns to sit at her bedside, singing songs, telling stories, praying, laughing, and weeping. I slept beside her on Sunday night. By Monday it was clear that death was drawing close. We were confident of mom’s wishes and longing to rest, and so while the thought of her leaving was heartbreaking, we trusted it was time. At approximately 10:25 pm that night she died, surrounded by us. We toasted her with wine served in little Styrofoam cups (all we could find) and ate chips in her honour- two things she loved, and always together.
Mom, because of you I enjoy sitting around a table for a long time, savouring food and friendship. Thank you for teaching me and Logan to take creative risks, for supporting our choices as adults, and loving our/your families. You introduced us to Jesus and taught us about what it means to live in Him. You were always on my team and caught me whenever I failed. Thank you for being my mom, confidante, friend, and cheerleader. Your example leads me as I mother Cate. I trust you continue to celebrate with God, just as I continue to celebrate you.
This year marks ten years of The Dale. A decade. I can hardly believe it.
Rooted in a history much longer, The Dale grew up and out of what was Parkdale Neighbourhood Church (PNC), formerly Parkdale Baptist Church. Many people contributed to that chapter of life in Parkdale, and it is to be honoured. Similarly, I want to honour this most recent chapter and the journey it has and continues to be. We are excitedly planning ways to celebrate this milestone over 2022.
In 2012 we faced a decision: close or reimagine ourselves. At the time, I was invited into the role of Executive Director and Pastor. I felt a deep sense of call to say yes, though I was admittedly terrified. As the sole staff member, I was tasked with coming up with a plan. I believed the way to formulate a way forward first required listening. I met with community members. I had coffee with people doing neighbourhood work. I knocked on the doors of organizations, businesses, and churches both in Parkdale and around the city. I walked the area incessantly. It was out of all these interactions and a LOT of prayer that a plan to re-boot was birthed.
I recently re-read, through tears, my proposal to the Board. Here is a taste of it:
Informed by the community, I propose:
That PNC close all operations, excluding the Monday Drop-In and Street Outreach. We do not want this community to feel abandoned. The Drop-In is our single largest program. We can seek out a location, i.e. Epiphany and St. Mark or Bonar Presbyterian that might allow us to use space for free, one day a week. In addition to this, we can develop teams of people to be present on the street.
That we pare down our expenses to food for Mondays, a negotiated salary (that I will fundraise) for myself and a fund to allow me to take potential supporters and community members out for coffee, etc. While an office in the neighbourhood would be helpful, I can envision working on my laptop in the Parkdale library and from home. I will commit to remaining very visible in the neighbourhood. I will also commit to develop a fundraising model.
That my time be primarily used to create a working group of current community members to revision and strategize for the future, including a possible name change and rebranding (i.e. logo, website, etc.); to get ourselves organized administratively, including incorporation and further development of the Board; to meet with potential funders; to research possible partnerships with other organizations and encourage our current partners to stay the course with us; to seek out a new space in the neighbourhood; and to effectively communicate with our current network of supporters (financial and otherwise) through personal visits and newsletters.
That we plan for this process to take up to a year. However, we can establish “markers” that we will need to meet at certain intervals throughout the year. If it becomes evident that this process is not working, we can re-evaluate and begin the process of closing down.
I truly believe this is an opportunity to build upon the exciting work that has long existed at PNC. We have deep roots. We have a beautiful, resilient community. We have endured much. We can rise up. Consider these words from an Advent reading that I have repeatedly returned to:
“Think of the seed. We commit it to the darkness. And a new plant emerges thanks to what O’Donohue calls ‘the ancient symmetry of growth: root further into darkness and rise towards the sun. A life that wishes to honour its own possibility has to learn too how to integrate the suffering of dark and bleak times into a dignity of presence. Letting go of old forms of life, a tree practices hospitality towards new forms. It balances perennial energies of winter and spring within its own living bark. The tree can reach towards the light, endure wind, rain and storm, precisely because it is rooted.”
Whew! And now here we are! I can confidently say that the last ten years have been evidence to me of God’s grace and provision. This work is built on that, along with the participation of so many people. To the Board who took a chance and dared to dream, to the staff team who heard the call to come, to every partner, volunteer, and supporter who said yes, to the core community who showed us how to shed our walls and be church around the neighbourhood, to my family who understood my fear and supported me to still take the risk: thank you. Together we have witnessed a phoenix rising out of the ashes. As soon as we can, let’s have a party.
Jesus was arguably a busy person, one who travelled a lot, healed people, and taught on hillsides and in places like boats and temples. What I also know about Jesus is that he believed in rest. He modelled how to recognize and tend to fatigue. He not only craved solitude but created time for it. I suspect he valued a good nap.
As the crowds gathered around Jesus and the disciples at the Sea of Galilee, he said, “Let’s go off by ourselves to a quiet place and rest awhile”. It might seem a surprising directive given that people were pressing in with many needs and deep longing for connection. However, Jesus’ love and wisdom knew that space for recuperation after a very busy time was necessary.
As someone who can easily get very busy, I am drawn to Jesus and his desire to withdraw. I know he experienced hunger, grief and weariness. And though he is God, none of those things made him ‘less than’. As humans it is important to discover that doing is good, but not at the cost of being. Our value cannot only be found in our work.
In the first book of the Bible we learn that God rested after the work of creation and asked us to do the same. Sabbath (meaning rest) is a gift. But how often do I forget about it or resist it? As we complete a very busy season at The Dale, I find myself ready to sink into the gift of rest. I recently heard someone refer to the rhythms and borders of life. I like that. We need to live into the tension that exists in all things.
The baby born on Christmas is the Jesus who, throughout the entirety of his life, modelled how to honour work and rest. He challenged his disciples to retreat, even when all they wanted to do was enthusiastically keep working. And in doing so, he was protecting them- from exhaustion, from the public eye, from thinking it was all up to them.
The longest night of the year was this week. I know for many the nights have felt long and dark for much, if not all, of this year. As I sat in the darkness of the Solstice, my wonder grew at how the light begins to lengthen just before Christmas. The light is about to burst forth, penetrating the darkness and we don’t have to do anything to make it happen, nor can we stop it. We are invited to just sit in the glow. May it fill us up for our continued work.
I will never forget the wise counsel of a grief counsellor I once went to: “the loss of someone you love is not something you get over; it is something you move through.” Having faced a lot of loss, I can attest to this being true. How could I ever “get over” my mom or dad? Or the people I have loved over the 20+ years of doing the work that I do? The various griefs that I hold do not look the same now as when they first occurred. And yet, I can be sideswiped by a familiar scent or a look-alike I notice walking ahead of me. Oftentimes this happens when I least expect it, though the feeling is now very familiar. I call it a wave of grief. I try, whenever possible, to ride it when it hits. I find that when I do, I can take a deep breath after it slows and continue the work of putting one foot in front of the other.
One important piece of this grief puzzle is what typically comes right after death occurs: the funeral/memorial. Covid has impeded this. For us at The Dale, services have been largely prohibited. We were able to help with and participate in a service held outdoors near the beginning of the pandemic, but very little has been possible since. We did get creative and put together grief support bags for the community, an activity that was meaningful and still not a true replacement for a gathering.
At the beginning of November, The Dale was able to move its Sunday service indoors. Though there are many lovely things about meeting outdoors, it has nice to been in a cozy space. It also means that we can do something for our TOO MANY friends who have died since March 2020. Just as we began a conversation about what to do, a long-time Parkdalian and musician named Heinz, approached me during one of our mealtimes. He put to words exactly what we’d been thinking: we need a time to honour our fallen comrades, one that is also a celebration. Heinz suggested we call it “Spirits in the Sky”.
Spirits in the Sky is going to happen on Wednesday, December 15th from 1 – 4 pm at 201 Cowan Avenue, in the sanctuary of Epiphany and St Mark. The space will be full of pictures, light, music, and opportunity to write down memories. There will be room to sit and reflect. Kleenex will be provided. It will be a drop-in (25 people can be in the sanctuary at a time), and there will be refreshments outdoors. We hope that this might be a step, however small it might seem, toward moving through the mountain of grief. Come. Grieve. Remember. Celebrate.
I have been reading a book that has challenged me to consider how to be very present to what is, or “consent” to be where I am. I will admit that the last few months have not been the easiest of times to venture into such a practice. It is a season of big transition: Dion living in Long Term Care, Cate leaving the nest, me discovering how to live alone. Then there is the general fatigue of Covid and the specific burden it is at The Dale: on both the staff team and the community. Add to all of this multiple deaths and limited ways to corporately grieve, systemic injustice, the list goes on. I even started to notice stress coming out in arguably small, but noticeable ways, including a sty in my eye and a kneecap that was moving around in ways it should not.
I am discovering that these less than ideal conditions (and let’s be honest, are they ever ideal?) are a very good reason to slow down and really notice what is going on both internally and externally. For example, what am I feeling? What do I need? What things might be necessary to root out of my heart? What are my hands busy doing- is it good or not? Together with my counsellor, I have been addressing these and many other questions.
We are now in the time of Advent, a word that means “a coming into place, view, or being; arrival”. For Christians, this is a period of preparation before Christmas and the arrival of Jesus. This year I am especially aware of how God is right in the place where I find myself: in the middle of the pain, the loneliness, the grief, and the stress. There is not an absence of God in the hardest of things. While I don’t always understand this, I do know it to be my experience.
By noticing and not ignoring the big things going on in and around me, I am re-discovering the joy found in being fully invested in a conversation with a person, cooking something, doing dishes, choosing a Christmas tree with Dion and Cate, creating home, making music, advocating, and remembering. It’s as though being present to where I am helps me experience the sacredness of living, in all of its complexity. It helps me to do what I can and know what I cannot. It propels me to rest. It rejuvenates my work.
None of this is easy. I have cried buckets of tears. Some days I am exhausted and would be content to hide under the covers. The transition that we face as a family is settling, but still strange and hard. The effects of the pandemic, injustice and grief are real. And yet. And yet, there is a coming into view, a sense that light is penetrating the darkness. I am (we are) being asked to walk this road and fortunately, when I pay attention to the terrain, I am confident that I am (we are) not alone.
Now that it is truly official, we are able to let everyone know that this week Dion moved into a spacious and bright private room in a Long-Term Care facility, just a short drive from our home. Quite honestly this feels like the impossible has been made possible. Since Dion’s hospital admission in August, we have repeatedly heard that what we need is not available: there are not enough Personal Support Workers, no more hours of care, the system is not set-up for a person in a situation like ours. We have gone into meetings feeling hopeful, only to leave deflated. Nearly every step has felt like an up-hill battle. Which is why, until entering the doors of this new place, we felt cautious about believing it was going to happen.
As you can likely imagine, this is the beginning of a massive transition for our family. There is a shadow side to this solution: we each live in a different place, something brought on by the disease that is MS. As relieved as we are for Long-Term Care, this is not where we imagined ourselves at this stage of life. I do believe though that the concept of home need not be limited to a single place, something we now have the opportunity to explore.
For those of you following our story will know, Dion and I are people of faith. We look toward and believe in Jesus. It has not been our experience that this makes life easy. Many of our prayers have not been answered in the way that we would have hoped. We are well acquainted with grief. Over the last few months we have chosen, often by the skin of our teeth, to lean into trusting that we would be provided for. We could not see the way forward. And yet we never were left alone. I am certain that we have been carried to this moment. God has used so many of you to participate in this work, and for all of it we are thankful.
I was looking at the first email I sent to people when Dion went into hospital. At the end I wrote this: MS has been a difficult journey, one that just got harder. Thank you for walking this road with us. As believers in the importance of community, we are grateful to our village for being such a source of light and love. As Henri Nouwen once said, we are trying to “be patient and trust that the treasure we look for is hidden in the ground on which we stand”. May it be so.”
On my way to work today I had the opportunity to listen to an interview of a person we know and care about at The Dale. I was thrilled to hear Tom share his story of living in rooming houses in Parkdale, the most current being a really good situation for him. Tom shares openly and honestly, saying things I think we all need to hear, including reminding us of our shared humanity. I decided to create the following transcript of his interview with Matt Galloway on the CBC’s The Current. For brevity’s sake, some “ums” and repeated words are removed. If you can, also give it a listen. Tom’s voice is important.
Matt: So, Tom why don’t you describe where we are right now.
Tom: We are at Beattie at my new address which is a great place. I lived at 1521 Queen Street West a long time ago, and my living conditions are a million times better. I can’t say anything bad about it. It’s great here.
Matt: Can you describe what it is like inside? We can’t go inside but describe what the living conditions are like in this building.
Tom: Well it’s basically seven or eight guys. We have staff on call. We have security. We have our own cooking, like we can cook ourselves. We have our own rooms; we have showers in them. So, we are self-maintained.
Matt: What is your room like?
Tom: It’s big enough for one person. Compared to where I’ve lived before, it’s a million times better.
Matt: What do you like about living here?
Tom: Here, the staff are always there for you. You know if you need help, they’re there. The people who live in the building, we get along. Some of us have our issues, but we work it out. You know, if they had more places like this to help people, it would be a lot better.
Matt: If you weren’t in a house, what would be the other options be in terms of somewhere to live?
Tom: I’d be dead.
Matt: Why do you say that?
Tom: That’s being honest, I’d be dead. Well for one, I wouldn’t know where I am and for two, I’d panic and for three I would just cut my throat. That’d be the end of it.
Matt: So, this is a lifesaving kind of place for you.
Tom: For me, it is more than lifesaving. I’m in an area where I know. People know me around here. And I’ve been here basically all my life, so it’s like a Godsend. A lot of people look at people who have issues with their mind or whatever and they look at them and they look down on them. You got to remember one thing, you could be that person. Don’t look at them with disgust, look at them as another human being with a problem and they are trying to get help. A lot of times people don’t do that.
Matt: You mentioned that this place is better than places you’ve lived before. Describe what the rooming houses are like you have been in before.
Tom: 1521 was a room, a shared washroom. You had drugs going in and out all the time. Here, you don’t have that problem. Because we’re really maintained in that way. So, there’s no show for any sort of narcotic, other than prescription.
Matt: You mention you had a shared washroom. What was that room like?
Tom: That other place at 1521? I’d like to say it in my way.
Matt: What’s your way of saying it?
Tom: It was disgusting. A shithole. I mean that literally. It was run as a hotel, illegally. You had 16-20 rooms on that floor, on one floor. And it was like everybody was battling, you know like fighting and the drugs that went in and out of there were like water.
Matt: Given how rough it is there, why would people stay there?
Tom: Why would people stay there? Because the rent was cheap. A lot of places ask you for first and last.
Matt: And people couldn’t afford to pay first and last.
Tom: That’s right, that’s the biggest reason. When you can’t afford to pay first and last and you get the option…okay, it may be a crappy place but you gotta have your head put somewhere.
Matt: Do you worry? I mean this is a big building and this city is really expensive now. And you take a look even across the road- they are doing renovations there. There’s a lot of money in this neighbourhood and people are renovating and turning houses like this that are split up into one big family house. Do you worry about that- that a building like this could be valuable in somebody else’s eyes?
Tom: It is valuable in a lot of people’s eyes. The houses around here are not cheap.
Matt: One of the other things, there are people in some neighbourhoods who don’t want houses like this near them. What do you say to those people?
Tom: Ahh. Wait until it happens to you and tell me you don’t want a house like this in your neighbourhood where you get help. You need houses like this. Give em something to lift their spirits, show them that somebody out there cares. But a lot of people don’t care. And that’s the whole problem with society.
Matt: Sounds like you landed in a good spot.
Tom: Ya, very good! I’m very happy to be here. If I didn’t get this, I would probably be dead by now. That’s being very, very honest.
Matt: I’m glad you are here. And I’m glad to have the chance to talk to you.
Since mid-August- however many weeks that is- my family and I have been on a rollercoaster. Dion’s health plummeted, then stabilized to a different place than before. He spent two weeks in a hospital setting that was and believe me when I say I am not exaggerating, terribly hard. An offer to a complex rehab program became available in what felt like the dark eleventh hour, a place that had not even been on our radar as an option but has proven to be the best thing for now. Just weeks ago, Dion, on top of everything, had to have surgery to remove a kidney stone, something that meant taking a few steps back in terms of his recovery. All along the way we have needed to push back on a broken system that is stretched too thin and often unable to meet the needs of the people within it. “Persist and resist” is the wise counsel I have received from a friend. And so that is what we do: persist with naming what we need for Dion to be safe and resist any options that are not.
How am I in all of this? That’s a challenging question to answer in a succinct way. I am sad. At times I am overwhelmed. I am determined to support and advocate and fight for what we need. Sometimes I feel okay. I am incessantly praying. Each day brings with it a mixture of laughter, gratitude, tears, fear, and hope. I think I have been wearing weariness like a second skin.
One of the [many] gifts I have received at The Dale throughout this time has been the holding of space for me: my emotions, my need for flexibility to get to meetings at the hospital, my busy-ness, my grief, and yes, my weariness. People stop me on the street to ask how Dion is doing and rarely, if ever, respond with overused clichés. Instead, they meet me in the pain and are strikingly matter of fact about how hard this must all be. The Dale staff team walk with me every step of the way.
I also am supported and strengthened by my family, friends, and neighbours. I am still whittling away at properly responding to their many notes of concern and care, all of which have made me feel less alone and very loved. I do not constantly talk about the importance of community as an academic exercise- it is something I have experienced first-hand. I have encountered many people who do not have anyone in their corner, and it is debilitatingly brutal. Without a community I don’t know how I/we would navigate all of this.
The journey is not over. We have many things to figure out. I feel challenged every day to be present to the moment, and to take it all a step at a time- an exercise in restraint for this self-professed internal worrier. Dion and I are actively choosing to trust that the God we believe in is with us, whatever happens. We persist and resist. Just today though the light broke through and we feel closer than ever to a solution. And so, we wait with hope and in expectation. I might just be able to shed that second skin of weariness someday soon.
It was nearly three weeks ago that Dion looked at me and said it was time to go to the hospital. We were out at the time, so I got him in the van and drove to the nearest emergency room. Once there, and after a bit of time, it was determined that Dion had an infection, one that was now in his blood. For someone with advanced progressive Multiple Sclerosis such as Dion, an infection is a particularly traumatic thing. His already reduced energy is forced to focus on it, leaving him unable to move. We always hope that with time, recovery will come. We also know that post-infection often means a new normal.
At this time Dion’s left hand is doing very little. He has regained some use of his right hand, though it is different than before. This, along with a variety of other things, means that Dion needs an increased level of care. It seems that the time has come for Dion to move to an assisted-living situation, one that will ensure he has access to what he needs around the clock. Even though we have known for the last 24 years (the amount of time MS has been an unwanted guest) that this could happen, this new reality is very fresh and raw.
I will not attempt to share or explain what the last few weeks have been like for Dion. That is his story to share. I will offer some of my own experience. Due to a variety of situations over the course of my life, I have learned to step into the middle of crisis. I can navigate a hospital room. I am not scared to raise my voice as an advocate. I sit vigil. And so, when Dion was admitted, I began to do all of these things, except with many limitations because of the pandemic. I needed to book appointments to visit, was rarely able to speak with his health care team, and felt increasingly overwhelmed. As the severity of the situation became more apparent, I felt desperate to have support in making a plan. This culminated with what I believe was a panic attack in a hospital hall. The fact that it took this kind of event to feel heard is, in my opinion, wrong.
Fighting for what we need to keep Dion safe, and for me to keep my head above water has been an up-hill battle. We feel grateful that Dion’s sister was here through a very tough week, and that our village has surrounded us with such care. Just when we thought the immediate options had been exhausted, we got the news that Dion could enter a rehab program at Toronto Grace, a hospital that we hadn’t even considered, but is proving to be exactly right. We needed a win and are grateful to have been surprised by this grace. We do not yet know what will come after rehab. We covet prayers and thoughts for Dion, for me, and for Cate as we navigate this part of the journey.
In the midst of all this, I have been helping Cate move to her new apartment. By Tuesday both my husband and daughter will no longer be living at home, something I cannot yet grasp. I am weary and sad. Every morning I wake up and immediately notice the anxiety I feel in my gut. I recently described myself as feeling paper thin, like facing one more obstacle might rip me in half. And yet, I am aware of being carried by God, and the faith of our friends. I have not lost hope. I am constantly praying and trusting that what needs to be, will be. And I’m not just saying that.
I think I will close with words not my own, as for now, I have few more. “Heavy”, by Mary Oliver:
That time I thought I could not go any closer to grief without dying
I went closer, and I did not die. Surely God had his hand in this,
as well as friends. Still, I was bent, and my laughter, as the poet said,
was nowhere to be found. Then said my friend Daniel, (brave even among lions), “It’s not the weight you carry
but how you carry it – books, bricks, grief – it’s all in the way you embrace it, balance it, carry it
when you cannot, and would not, put it down.” So I went practicing. Have you noticed?
Have you heard the laughter that comes, now and again, out of my startled mouth?
How I linger to admire, admire, admire the things of this world that are kind, and maybe
also troubled – roses in the wind, the sea geese on the steep waves, a love to which there is no reply?