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A Year of Hard (and Good) Things

I was sitting in bed one morning last August when it felt like the earth shook. Moments later a text from a neighbour explained the cause and had me running to the back window. A massive tree on a lot next to ours had fallen. It completely filled our yard, coming just short of the house itself while destroying our one-day-old shed in the process. The tree also blocked Dion’s only entrance/exit to the house. I felt stunned, especially hearing that Dion’s Personal Support Worker had been where the tree now lay, less than a minute before.

Shortly before the tree incident, workers had begun to fix the siding on our house. It was a job that we weren’t all that excited about needing done, though understood was necessary. We thought it would be done in about a week, maybe two.  It was not- mostly because the crew seemingly disappeared. In the meantime, we got someone to clear enough of the tree that Dion could get out and decided to escape to a movie. On our way there I had two difficult conversations on the phone- one trying to negotiate the covering of repair costs to our yard, and one attempting to track down the siding company. As I slid into a seat in the dark theatre, I began to cry.

After the movie, while still in the lobby, Dion looked at me and said he was in trouble. I asked a few questions and understood very quickly that “being in trouble” meant “get me to the hospital”. I got him in the van and drove to the emergency room. Though we didn’t know it yet, Dion had a very serious infection, one that would soon mean he could not move his body at all. Infections are no one’s friend but become especially scary when a person has Multiple Sclerosis. That day, even though he eventually recovered from the infection, was the beginning of Dion’s journey to Long Term Care. 

I had what I believe was my first ever panic attack in the hospital that first week of Dion’s admission. It was nearly impossible to talk to the health care team and no easy solution was apparent. I remember repeating the only prayer I could muster, “Speed to save us. Haste to help us. Speed to save us. Haste to help us.” Stumbling out of the hospital, I saw my brother and sister-in law drive by. I hoped they saw me too. Moments later we were on the sidewalk together, me a crumpled mess. My sweet nephew handed me some Kleenex and a bottle of water with concern written all over his face. Together we came up with a next step. 

What followed was a series of next steps, which included things like strong advocacy, hard conversations, and relentless prayer. After a battle to get Dion into a rehab program, we got word that he was accepted and to be moved the same day that I needed to get Cate into her new apartment. At the end of that day, I got into the elevator of Cate’s building and began to weep. I cried all the way home to an empty house. I decided to sit in that sadness and not try to escape it. In the morning I took a deep breath, relieved I managed to get through that first night.

There have been hundreds of nights since that first one. As August nears, I can’t help but reflect on this past year. It has been about living into the tension of so many things, embracing change both chosen and not, and weathering a spectrum of emotions. I have watched Dion adjust to Long Term Care, grieved that MS took him there, and felt relief that he has the support he needs. It is not how we imagined life to look at this stage AND it is our reality. 

The tree got cleared. The siding on the house was eventually completed. Cate comes to the house with frequency, much to my delight (and actually will be living at home again in the fall until going to the UK in January). You might spot Dion speeding down the street in his wheelchair, as the lack of Covid restrictions means he can get out and about. My therapist continues to help me navigate all the change, as does Dion, Cate, my Dale team and a community of family and friends. Some days I am full of energy and ideas. Other days I am hit with waves of sorrow. Death has hit again and again. So has opportunity to listen to live music, eat really good food, receive and give gifts, and experience the embrace of loved ones. 

There is a painting by a friend named Gil that hangs above the piano in our living room. It is pictured below. I stared at it a lot last August, especially as I was pleading for help. I felt like I was/we were stuck in the most turbulent part of the water. I couldn’t imagine the calm. “Haste to help us. Speed to save us”. I can’t claim that the answers came quickly, or that they were the ones I wanted. A way forward was made possible. I do look at that picture now and reflect on how different things feel a year later. There is nothing easy about this road. And somehow, it is also mysteriously good. For that, I am grateful. 

Artist: Gil Clelland
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Present to What Is

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.

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Stilled Waters: The Long Journey Home

Sometimes words fail me. This week has been significant, and I want to tell you about it, but I am all verklempt (overcome with emotion). 

We were walking along “the block” as it gets referred to in Parkdale on outreach. There are a few key spots on the strip, including outside the library, beside the Pizza Pizza, in the bus shelter, and in front of the liquor store. As we crossed at Dunn and Queen, we spotted a long-time friend, one whose health we have been concerned about and felt relieved to see. He and I have known one another since 2007. Initially we would primarily connect outdoors, then we would sit together at The Dale’s Monday Drop-In and share a meal. Our friendship formed quickly and has deepened with time and through many shared experiences. We have seen one another through a lot, navigated grief, and sung “Bridge Over Troubled Waters” together more times than I can count. 

On this day he had an urgent request: find his family, people he had not seen in close to a decade and worried he had pushed away. I immediately said yes, explaining that I could not promise I would be successful, but that I would do my best. Armed with a few names I began to investigate, a process that led me to a Native Friendship Centre in the area my friend is from. I sent messages in every form I could, praying that it might help. Within hours I had a stream of messages from various family members, all eager for a reunion. I nearly ran to find him, communicate how loved he is and help facilitate the re-connection. Today he was picked up by his nephew to visit home. 

A second story: He and I first met along the block too. I remember it clearly: we were introduced by the big globe beside the library. Since then we have journeyed together through a lot. Along the way he took to heart The Dale’s invitation to full participation and became pivotal to our breakfast program at the Health Centre, and more recently at all of our meals-to-go. He, just like my other friend, loves to sing “Bridge Over Troubled Waters”, referring to it as number 41 (the spot it lives in The Dale’s Songbook). It is no small thing that on Tuesday we got to help him move into an apartment of his own, a long-time dream that is finally a reality, his quiet excitement both palpable and contagious.

Things don’t always work out like this. Sometimes reunions aren’t possible. The road to housing can be impossibly long. But this week miracles happened. This week the troubled waters were stilled. 

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Halted Mobility, A Lament

EDIT: The subject of this blog, the broken lift which halted Dion’s mobility, was fixed exactly four weeks after its breakdown. Thank you to everyone who offered us support from near and far during this time.

When my husband Dion went through the most significant crisis of his MS journey a few years ago, we were faced with many decisions, including: did he need to live in a long-term care facility? If not, could our home be adjusted to accommodate his needs? What ensued was a long renovation to our house, one that was made possible through the gifts of many people, and yes, the bank. Along the way, we had a number of meetings with medical teams in order to discern what Dion needed, what I needed, and what we needed as a family. 

We determined that our basement would become Dion’s main living space, an option made possible through the discovery of a through-the-floor lift, aka a residential elevator. My brother/contractor organized the many trades people needed to dig down so that the ceilings would be high, build an accessible bathroom, create a space for a hospital bed and all the necessary mobility devices, make a cozy area for all of us to hang out, and install the elevator. The transformation was remarkable and enabled Dion to move home after living elsewhere for over a year. 

One recent evening, just as Dion, Cate and I sat down to dinner, there was a loud “thump”. At the time, I was the only one who noticed it. We figured it must have been something outside and proceeded to eat. When Dion got in the elevator to get downstairs in preparation for the arrival of his Personal Support Worker, it would not go down and we realized it was the culprit of the “thump”. The lights came on as they should, but nothing. I tried calling two different after-hours repair companies, only to learn that no one at either could service our particular unit. Stumped, we decided that Dion needed to be carried down the stairs (a precarious, but necessary choice) so that he could get to bed. We presumed that by the next day we could get the elevator fixed. That was three weeks ago. 

Since that time Dion has felt trapped, his independence halted. Through the effort of a mechanic, Dion’s wheelchair was able to be moved downstairs. That chair weighs in at over 400 pounds, making it necessary to leave it in the basement. Instead, we have a rental wheelchair that now lives on our main floor. At least three strong people are needed to lift Dion up and down the stairs each day, or at least every other day. 

When Dion is in the basement, Cate and I need to make sure that he has the things he needs. We have Personal Support Workers in twice a day, but only in the morning and evening. That leaves a large gap in Dion’s day. Plus, Cate is in school and I have a job, one that helps support our family. Internally, I battle with needing to be in multiple places at once, sometimes terrified that I am failing at everything. Dion often says that MS is “our” disease. It is one that each of us (including Cate) is required to carry in different ways, some more visible than others. 

Today is Maundy Thursday, the day we recall how Jesus knelt and washed the feet of his friends. Having someone else wash your feet is an intimate and vulnerable thing. These last three weeks have felt a lot like that: intimate and vulnerable. We have felt at a loss, like there is nothing we can DO to fix the issue. We do not understand elevators and are at the mercy of those who do. Dion has needed people to literally pick him up and I can’t be one of them, as I simply lack the strength. We have prayed and begged for a solution, one that as of yet has not come. Honestly, Easter is around the corner and yet right now feels terribly far away. 

I trust that at some point the part will arrive and the elevator will be fixed. Until then we are surrounded by friends and family eager to help. This is something I never want to take for granted. Community is a fundamental part of surviving hard things. My gratitude, mingled with tears, streams through the challenge. 

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Moving from “I” to “We”

It’s not hard to describe the regular schedule of The Dale. On Mondays we have a lunch drop-in, on Tuesdays we meet in the park, etc. What maybe is more difficult, unless you’ve spent time with us, is describing how things feel.

On Monday I found myself unable to meet with all of the people who wanted to connect and it admittedly led to some tension. I became a little sad and needed to take a minute to compose myself. I want to listen well, make the calls someone needs (often to a Social or Housing Worker), and generally be a good friend.  In that moment of deflation, there were many community members who did for me, exactly what I hope to do for them: they noticed I was a tad out of sorts, offered encouragement, gave me a hug, and asked how to help.

On Wednesday we held a Memorial Service for Mike. It was somber. He was an important friend to many people. A number of people spoke to me about the difficulty of compounded grief: how there have been too many untimely deaths and that the need to say a proper goodbye is necessary. There is relief that The Dale is present to facilitate memorials and funerals. One person came to me after and in their grief for Mike repeatedly said, “what would we do without The Dale? We need to keep being together”.

Following the Memorial a group of us went to a small stretch of beach along the lake because a community member named Kim had indicated her desire to be baptized. Joanna and Meagan led two readings, one from Scripture, the other something Kim wrote. And then we waded out into Lake Ontario where Kim announced her faith and allowed me the honour of baptizing her. What followed was communion and a tea party on the sand. With her permission I share Kim’s words about The Dale here:

Loving me as I am, in my loner spirit and nomadic ways, I felt drawn to a spirit community that I had not known before. I had always found my “spiritual” needs in nature, among God’s creation of wooded areas and rivers, and away from critical judging eyes. I had become a loner due to difficult circumstances in life, and felt I never quite fit anywhere else. Then I saw an open door, and the light shone on my heart, and a community grew into my family that I had not known before. I felt connected, and my loner spirit changed: I grew from being an “I” single, into a shared “We” community, and that felt good. I found stability, built a foundation, within a church with no walls, yet full of a caring community spirit. I now walk proud, and take risks to move forward, knowing I am part of community, and we walk together spilling out into the streets!

So many different feelings: tension, grace, grief, relief, joy, connection. The thing about The Dale is that we really do want it to be a place of belonging for whoever comes here. It’s not just about me, or other staff/volunteers doing something FOR other people, it’s about all of us doing something together, wherever we come from. We all, including me, need to both give and receive. Choosing to do life together in this way is messy. Sometimes we let each other down. People fight. The challenge of life circumstances, either poverty, or addiction, or mental health, or broken relationships, or death, or [insert your own struggle] can impact the way we interact with one another. And, it is most often in working through the messiness that we experience the joy of redemption.

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A Year End Letter

One of the first posts I wrote on this blog was titled, A New Adventure where I invited people to join me on a journey. Now, years later I share this letter, fully aware of how far The Dale has come. This too is an invitation, one to come alongside us in whatever way you can. Maybe you can give a financial gift, or share our story with someone else, or attend a drop-in, or…whatever it is, we are grateful.

 

The Dale is my family…We are a family held together with love.

Through thick and thin we stay together.

Marlene, talking about why she loves The Dale

When asked to describe The Dale, our people consistently say it is where they find friendship, community and a place to belong- it is like a big family. We love to be together and create space for everyone to fully participate, an attempt to have people experience what it means to both give and receive. For example, people might offer a warm hello, help to cook, do dishes, sweep floors, play music, or support someone in distress.

We have been working all year to tell The Dale story, to generate financial support, and to strengthen the ways that we are present in our neighbourhood. As a community without our own walls, we have a well-established nomadic weekly routine, one that takes us from location to location for our drop-ins, church service, and administrative work. We do street outreach and advocacy, visit people in hospital, in jail, in their homes, and outside, and accompany people to appointments and court.

The Dale is entirely reliant on the financial support of others to do what we do. As we reach the end of the year, we invite you to consider making a donation to this work. In order for us to plan and budget well, it is very helpful to receive monthly gifts of any size. This is easy to do by using our Pre-Authorized Remittance system. There are other ways to give too, including on-line.

We hope and pray that you think of the people at The Dale as friends, and that you find any contact with us enriching. It certainly is for us- whether you are volunteering, making a gift, being together in a community activity, or simply staying in touch and offering your encouragement.

The Dale is life-changing for Marlene and so many others who find friendship, community and a place to belong with us. So today, we ask you to help move The Dale into another year. Thank you so very much for your goodwill and support. We are grateful for you and others who care about The Dale and our people.

Sincerely,

Electronic Signature

Erinn Oxford

Pastor and Executive Director

Regular Giving

Give on-line through CanadaHelps

Become a regular donor by filling out this Pre-Authorized Remittance Form and sending to erinn@thedale.org or mailing to:

The Dale Ministries
PO Box 94, Station C
Toronto, ON  M6K 3M7

Cheques or Cash

Cheques should be written to THE DALE MINISTRIES and mailed to the above address. To donate cash, please contact Erinn Oxford at erinn@thedale.org.

 

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In for the Long Haul

I’ve had the opportunity to tell the story of The Dale to a variety of new people in recent weeks. I try to pause often so that people can comment or ask questions. It isn’t uncommon for a least one person to ask, “how do you keep doing this?” Inevitably I find myself fighting back tears (or not) as I describe the deep sense of call I have, the variety of ways this community fills me up and how much more I receive than I even give.

One Sunday I arrived at the space where we hold our church service, feeling about as ill-prepared as one can. It wasn’t that I forgot an overall plan for our time together: I had printed off the necessary readings, bought bread for communion, and studied for the time of teaching. Lacking was my sense of worth. “When are people going to realize that I have no idea what I’m doing?” I felt rather empty.

I was reminded that day of how less of me means more room for the Spirit to move. Multiple people, without knowing what was going on in me, prayed that I be assured of my place in the community. One person asked that I be anointed in my leadership. My family was prayed for: not once, not twice, but at least five times. A dear woman and friend, one who knows poverty all too well, cupped my face during the sharing of the peace and said, “oh, little lamb. I worry about all that you carry. You are not alone”.

With my head bowed, I continued to listen to the prayers of the people. So much was acknowledged in a raw way: the pain of estranged relationships, the feeling of defeat in addiction, the brutal nature of physical disease, and the discomfort of dashed dreams. Tempering all of this was the ability to share gratitude for the simplest of things. It all felt real and somehow infused with hope.

Though my work is admittedly hard, it is so good. This community pushes me to experience life below the surface, in those deep places where one is enabled to both weep and laugh, mourn and dance, feast and fast. In almost inexplicable ways, God is present. So while I fumble around, sometimes second guessing my abilities and role, I am reminded that there is a place for me here. The truth is, I’m in this for the long haul.

 

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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.

 

 

 

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It Takes a Village

Last summer one of my Dale friends looked at me quizzically and asked, “what happens to us if Dion’s health worsens and you need to take care of him?” I thought about it for a moment, not wanting to skirt the question, deny my role or belittle the obvious concern felt, finally responding with “we’ll deal with that if and when the time ever comes. The Dale is so much more than me and I’m confident we’ll get through things together”.

As I sat in the hospital with Dion this week, I thought of that conversation. I also remembered how a visitor to the Drop-In recently asked me what being the Director of The Dale has taught me about trust. The truth is that the last four years have felt like one big trust exercise. I have needed to trust that our vision was right, that giving up our “walls” would prove to be wise and not foolish, that we would have enough resources, that delegating responsibilities to a variety of community volunteers would work.

You know that trust building game where you have to fall back into the arms of your team? Well, the arms of The Dale team are strong. The kitchen is run by an amazing group of volunteers, coordinated by Souad. Souad has stuck with me/us through a lot. She calls me in to help sanitize a sink or taste the food, but rarely am I a cook. It isn’t uncommon for community members to show up before Joanna or me to get things started at the Thrift Store Drop-In. The breakfast on Wednesdays is entirely prepared by two very faithful core volunteers. I could go on.

In the autumn of 2012, Joanna Moon took a giant leap of faith to join me on staff. Since then I have gained a sister-like friend and work partner, one who showed up at the hospital, bought me chocolate, delivered cards filled with the well wishes, prayers and love from our beloved community, prayed with me AND staffed everything this week at The Dale. She did it without question and for that I am so, so grateful. I also don’t take for granted that it was hard work.

Not only did the regular crew carry on as usual, friends also sprang into action to offer additional support. Sanctuary sent some of their staff to help. I’d like to send a big shout-out to Kim, Sam, Beth, Simon and Greg for being present. And thank you to those who wanted to be around even if you couldn’t.

With Dion in the hospital and now at home slowly recovering, I’ve been witness to what I always knew would be the case: The Dale has carried on without me, while simultaneously being with me. I was back at the drop-in today, keenly aware of the truth that it really does take a village.

p.s. The number of family and friends who were also our village this week is large. I’ve focused here on The Dale, though I could write pages about the depth of support we have felt in all spheres of life.  My gratitude runs deep.

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Ciao da Roma (Hello from Rome)

I am writing from Rome, Italy. Had you asked me if I would be doing this even just weeks ago I would probably have laughed and explained that while a trip with Cate was certainly on the radar I couldn’t have imagined it this fall. For some time we have been commiserating as a family about how to mark Cate’s “coming of age” or in other words, becoming a teenager. Not long ago we attended a beautiful bat mitzvah that strengthened our resolve to somehow celebrate this milestone. Together we decided that a mother/daughter trip to a location chosen by Cate would be our special event.

Since September I have been fairly quiet here, in part because life got even more full than my already full norm. I sort of put my head down, wrote a handful of grant proposals, spent a lot of time with The Dale community, did a funeral, went on hospital visits, helped get Cate back into school, choir and dance routine, enjoyed Thanksgiving and tried to stay on top the administration of both my work and home. In the midst of all this we managed to find the money and a window of opportunity for Rome, a reality I’m still pinching myself about.

I think if the only thing I got to do on this trip was watch Cate’s face upon her first glimpse of the Colosseum it would be worth it. Seeing this place through two sets of eyes is a wondrous treat. We are surrounded by history. Yesterday we went to Pompeii and walked where others did until their city was covered by volcanic ash and forgotten in 79 AD. We are being reminded of the beauty and brutality of the Romans. We are also enjoying modern Rome: getting around on its transit system, eating amazing food and seeing where the old meets the new.

I am so proud of Cate and the young woman she is. Cate is mature beyond her years and yet not in a rush to be older than she is. She notices things: the detail in an ancient mosaic, the person sleeping in a doorway, the aroma of a bakery. She also seems to know this is an experience that not every thirteen year-old will have and is doing what she can to not take it for granted. She is eagerly writing about everything in her journal and excited to share it with Dion upon our return. We will only be here for a little over a week, but I know this is an experience we will never forget.

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