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With My Shell Facing the Sun

Sometimes I feel like a turtle on its back, struggling to get back on its feet. This feeling is new to me. I think a number of things contribute to it: a different stage of life, wondering how to best live into my various roles, living alone, and fear of the future. There have been days when I just don’t feel like myself. Times when, even for this emotive being, the emotions hit out of nowhere, and hit hard.

The road to having my turtle shell facing the sun again started to feel a little easier in October. I got a lot of sleep. I have been eating protein like it is my job. My two-litre water bottle is getting drained, sometimes more than once a day. But I think, more than anything, my awareness of what is right in front of me has become heightened. While praying during a drive, I was reminded that I don’t need to anticipate everything that might happen at The Dale or at home. I don’t need to figure it all out in advance. I can simply try to take the next best step.

And the next step, in nearly everything, has been to pause and give thanks. This doesn’t mean that I am ignoring the hard or pretending that everything is fine. It means that I am desperately trying to live into the ever-present tension of joy and sorrow in my life. To recognize that both can be true, sometimes in the very same moment.

And so, as October comes to a close, I want to share some of what I am grateful for this past month.

Because our house is accessible, I have hosted family gatherings for a very long time. Recently, my brother and his family refreshed their backyard, which included eliminating a step. This meant they could invite us over on Thanksgiving Monday. The weather, the meal, and the company were all beautiful. There was something very meaningful about being welcomed into a space that had been made accessible to us.

Another Story Day happened on October 21st. At one point, after stepping out to speak with the caterers, I re-entered the room and was struck by the buzz of conversation and connection. I paused for a moment to breathe it all in, giving thanks for everyone gathered. So many people, each with their own story, making room for one another.

Someone in Parkdale found a quarter and, instead of keeping it, donated it to The Dale. This small act reminded me of all the times we have had just enough because of tiny gifts that are actually huge. I am continually moved by the generosity of people who give from what they have, however much or little that might be.

We went on a retreat with a group of community members to Camp Crossroads. For some, the experience was full of firsts: the first time on a school bus (our mode of transportation), the first time roasting a marshmallow and making a s’more, the first time travelling north of the city. Experiencing their awe increased my own. There is something wonderful about seeing familiar things through someone else’s eyes and being reminded that there is still so much to marvel at.

None of these moments has made the harder things disappear. There are still questions I don’t have answers to, emotions that catch me off guard, and days when I feel a little upside down. But October has reminded me that gratitude doesn’t require everything to be okay. It asks me to notice what is good, even when life feels uncertain. And perhaps, for now, that is enough. I don’t need to know how everything will unfold. I can give thanks for what is right in front of me, take the next best step, and trust that, little by little, this turtle will find its feet again, with its shell facing the sun.

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Accessibility as Hospitality

It was an accessible restaurant for a couple of years. Dion and I would occasionally go, entering through a door that was both wide and street-level. One day we arrived to notice that the door was locked. I went around to the other side of building to discover that they had reconfigured the space. Now the only entrance was up three large steps. “But look!” the manager said, “The door is at least automatic”. I asked if there was any way they could let us in the other door. The answer was a hard no. “We can help him walk up the steps!” To which I said, “my husband cannot transfer out of his wheelchair. There is no walking up the steps. Do you realize that you have made a once accessible place into the opposite?” I felt enraged on Dion’s behalf. 

This is but one of many stories that could be told about the general lack of accessibility in our society. My own awareness of it was heightened when my mother became quadriplegic, with some very limited use of her right hand. Between that, Dion’s journey with Multiple Sclerosis, and the many people in my community at The Dale who require mobility supports of various kinds, my learning has expanded. This does not mean that I completely understand how it feels to experience accessibility limitations- I would never dare to claim that I do. It does mean that my eyes are open, and I feel the challenge to make accessibility a priority. It is, in my opinion, a matter of hospitality. 

My greatest teachers in this are the ones who have to navigate obstacles every single day. I have learned that the swing of a door matters, as does the placement of an automatic door button; that one step is too many; that sometimes the only way a person can manage to drink out of a cup is with a straw; that support animals are life-changing; that the height of sinks and toilets and counters can be prohibitive to some people; that not being able to participate in events because you can’t get in is heartbreaking. 

Buildings of all kinds have not been designed to be inclusive. I’m also very aware of the cost that is involved in making a space accessible. We had to build a ramp for my mom. And then when Dion required a new level of care, we had to renovate our home. We could not have made that happen without the financial support of our community. Our connections afforded us a certain privilege. I reflect on this a lot. What I long for is our experience to be replicated for everyone. 

I imagine that an important way forward is to have anything new designed for all. I recently read about how the remote control was invented for people with limited mobility, and now is a convenience for all. Similarly, SMS text messaging was first created for people who are deaf and is now a preferred method of communication. It is so easy to take those two things for granted but imagine what they mean for someone who lacks mobility or can’t talk on the phone. Accessibility for all concerns and impacts every aspect of life. 

As I walked out of that restaurant I mentioned, I was followed by one of its employees. With tears in her eyes, she explained we weren’t the first to mention the issue of the entrance and that she would be sure to talk to the manager. Seeing someone not be able to get in humanized the issue for that person. It was no longer just a door, but an obstacle. I hope that for her, and for her manager the experience will bring about tangible change.

I often think about the Biblical story of the paralyzed person who was lowered from the roof by his friends in order to see Jesus. I desire to be that kind of friend. It also reminds me that our bodies are not static. What we need today might be different tomorrow. For me, it has started with asking: for people to get around freely and in autonomy, how can we all contribute to and conceive a world that’s accessible to them and ultimately to all? 

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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.