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.