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?