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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. 

Posted on by erinnoxford · 5 Comments

The Liminal Spaces of 2019

A lot has happened this year. Things that were good, things that were hard, and everything in between.

The renovations to make our home accessible for Dion came to completion. And then the troubleshooting began. The swing of a door made it impossible for Dion to close it, and so an automatic door opener became necessary. The door of the elevator failed to latch and therefore wouldn’t move (we have now figured it out). The schedule of Personal Support Workers sometimes worked and sometimes didn’t. What also transpired was that Dion, Cate and I could have dinner around our table again. And this Christmas we were all in the same place. So many of you made this possible through your generous financial gifts, participation in the meal train, phone calls and visits, and prayer. We do not take it for granted.

Our staff team at The Dale went through a few changes: Pete Nojd and Olivia Dower joined the crew, and Meagan Knight had a beautiful baby and went on maternity leave (she will be returning in the fall of 2020). On more than a few occasions I found myself dumbfounded by the work God has done to build The Dale. I recall what it felt like to be by myself, then for five years it be me and Joanna, then The Dale three with the addition of Meagan, and in 2019 almost doubling to five with Pete and Olivia. Each person is precious; each person feels a sense of call; each person brings something unique.

Cate entered her last year of high school. We have read about universities and colleges. She has been preparing a portfolio and will be sending in applications before mid-January in order to study photography. I have enjoyed every season of Cate’s life, and this one is no different. I also find myself reflecting on Cate’s early years and feeling nostalgic. Little Catie-Cate is not so little anymore. She is a seventeen-year-old with an old soul, a compassionate heart, a keen sense of joy, and a wonderful eye.

We said welcome and hello to many new community members at The Dale. We also said goodbye to Wally, Keith, Sharky, Rudy, Mary and most recently, Julie who was murdered on December 22nd. Life and death, joy and grief. As Henri Nouwen so wisely said, “mourning and dancing are never fully separated. Their ‘times’ do not necessarily follow each other. In fact, their ‘times’ may become one ‘time.’ Mourning may turn into dancing and dancing into mourning without showing a clear point where one ends and the other starts.”

Mourning has turned into dancing and vice versa on numerous occasions this past year. I often feel in a liminal space, or “in-between place”, at such times. Liminal comes from the Latin ‘limen’ which means ‘on the threshold’. I have found myself on the threshold in many situations, where I can see what is behind while also sensing what is in front. Living into this tension has been an exercise in faith and has required strength and grace not my own.

Dion is home/MS is brutal. The Dale is growing/people are dying. Cate is graduating/Cate will leave the nest. I feel thankful that in all these in-between places there is space for grief and fatigue, alongside opportunities for joy, courage, and hope. At the end of 2019, my desire for the Christmas promise is heightened. Let this weary world rejoice.

Merry Christmas everyone. May there be light in the darkness, hope in the difficulty, and love to cover it all.

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Life is ‘Brutiful’

Dion moved home two weeks ago yesterday. Today I called an ambulance for him. This is the roller coaster that we too often find ourselves on.

I will start by saying that Dion is safe and receiving good care. He definitely has an infection. We are also waiting to hear the results of other tests.

At the house, the renovations I have described here before are nearly done, but not quite. We found ourselves rather suddenly having a firm date for Dion to move back, even though the bathroom had no fixtures in it yet. For me, this produced serious stress and a worry that Dion could not have the kind of homecoming we had previously envisioned. We also still needed to work out his care plan, one that would create a safe environment for him and respite for me.

Move Day was a beautiful spring-like Wednesday. I know there was something powerfully symbolic about that: Dion was experiencing home-coming that felt like new birth. In that moment the lack of a bathroom seemed minor. After all, it would be the first time all three of us would sleep under the same roof in over a year.

Fresh life also brings growing pains. It would be unfair to not identify how significant a transition this is for our family, or how difficult it is to not have a working bathroom. We have personal support workers coming every morning and evening. If something goes wrong in the middle of the day? We’re still trying to figure out what a proper Plan B is, and it feels strange to not have one, two weeks in.

Which brings us to today. One of the paramedics took my hand as he was leaving the ER and said, “I hope you all get over what seems to be yet another speed bump”. We’re trying. There is still humour as we sit in the hospital. We are aware of a peace, love, and grace that surpasses our understanding. And this is hard. The term we often use at The Dale for a situation like this is ‘brutiful’. Brutal and beautiful mashed together.

Your prayers and good thoughts are appreciated: for recovery, for a solid Plan B, for strength, and for grace to mark this whole brutiful thing.



Posted on by erinnoxford · 3 Comments

The Bobcat in the Backyard

There’s a four-wheel loader, otherwise known as a Bobcat in my backyard. The basement has been demolished, revealing strange things like no framing or insulation along certain walls, wood panelling, and linoleum tiles. A film of dust covers everything, at least on the first floor. Orange fencing surrounds the front yard. And maybe most traumatically, the porch is gone, leaving the porch swing beached for now.

Renovations have begun.

I am grateful that my brother Logan is our contractor. We communicate easily and have the same vision for things. One day six of our friends showed up to help Logan get all of the debris into a bin. It got done so quickly, that some of them were able to stay and continue working, notably taking down the drywall from the ceiling. To say I am thankful is an understatement.

As many of you know, Dion has not been living at the house since January. Multiple Sclerosis, though constantly present, reared its head in a dramatic way for him at that time. Since then he has been adjusting to a new normal at three different facilities, Michael Garron Hospital, Bridgepoint, and now Bellwoods. This period has been a very difficult one for him, and for me and Cate. I don’t quite know how to describe it all. Suffice to say, while there are good things happening, I am also scared, sad, and tired.

The plans for the house include digging down and underpinning, putting in a lift from the main floor to the basement, a barrier-free washroom, and space for a hospital bed. We have no idea when it will be done. Currently Dion is receiving good care at his new place, and outpatient physiotherapy at Bridgepoint.

With everything going on, I have chosen to be pretty quiet here lately. I haven’t known what to write, even though writing often helps me sort out my thoughts. I am trying to live in the tension of a life that is full to the brim, and some days it all feels like too much. I’m looking for ways to rest and am eagerly anticipating having the month of August off from work. There is a lot to process, and I’m hoping for a little more space in my brain to do just that.

I do wonder if there is something symbolic about having to tear down old things in order to make something new. As strange as it is to have a Bobcat parked where my car usually is, there is something exciting about it all. Things are happening. And that, however messy it is and nervous it all makes me, is good.

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