Journeying with MS

Dion and I were interviewed by Drew Marshall on the radio last Saturday. He asked us a lot of probing and down-right challenging questions about how the Multiple Sclerosis that Dion has impacts our life and faith. Since then I’ve been thinking a lot about what Dion and I choose to share about what is both a fairly public struggle and tender, private pain.

I once led a discussion about what it means to be vulnerable in community settings. Some pushed back on the notion that it is possible to be appropriately vulnerable because of past experiences when it just wasn’t. I understand that. I dug around in some dictionaries and thesauruses and found words like “trustworthy” and “authentic” to describe what I hoped would accompany the kind of vulnerability I wanted to define.

I desire to share authentically about the journey that Dion, Cate and I are on while being careful to hold some of the nitty-gritty for us. The reality is that pretty much everything about the disease of MS sucks, except that it has brought us closer together. As a family we know what it means to struggle. Cate is developing into an incredibly mature almost thirteen year old, in part because of what she is learning about love and compassion through this. God shows up in surprising ways: sometimes big and sometimes almost imperceptibly small. We know we have much: a home, an extended family, a large community of people who love us, mobility aids and good doctors. And we long for more.

The truth is, I would trade places with Dion if I could, even if just for a day so that he might run the way he dreams of. I believe that he could be physically healed and also live in a present where he isn’t. As I once confessed here, it is difficult being the one who is not sick. Sometimes I have no idea what I should say, do or ask for. I know Dion has days where he feels the same.

Thank you for coming alongside us in such a variety of ways and for listening as I fumble around to figure out how and what to share.

Will the Circle be Unbroken

I don’t know exactly what was going on, but at the drop-in and while on outreach last Wednesday something seemed to be up. We saw friend after friend struggling hard. There was a certain heaviness that lay upon the shoulders of each person. I went home feeling burdened and sad.

As I reflected that evening, it occurred to me that many of my interactions ended with my hand being grabbed and usually held against a forehead. I would just stand there peering at the person on front of me, struck by their tears and clear longing for healing and hope, feeling like all I could do was hold on. One person said, “please just hold my hand and sing ‘Will the Circle Be Unbroken’ before you go”. A few others gathered and agreed. For the next few minutes I sang, struck by the poignant lyrics that seemed to bring to life the inward prayer of many that day.

All I could do last Wednesday was offer my hand and a weepy rendition of a hymn from 1907. The song has been rolling around my head ever since.

I was standing by my window
On one cold and cloudy day
When I saw that hearse come rolling
For to carry my mother away

Will the circle be unbroken
By and by, Lord, by and by
There’s a better home a-waiting
In the sky, Lord, in the sky

I said to that undertaker
Undertaker please drive slow
For this lady you are carrying
Lord, I hate to see her go

Oh, I followed close behind her
Tried to hold up and be brave
But I could not hide my sorrow
When they laid her in the grave

I went back home, my home was lonesome
Missed my mother, she was gone
All of my brothers, sisters crying
What a home so sad and lone

We sang the songs of childhood
Hymns of faith that made us strong
Ones that mother taught us
Hear the angels sing along

Will the circle be unbroken
By and by, Lord, by and by
There’s a better home a-waiting
In the sky, Lord, in the sky

Learning Each Other’s Names

I am glad so many people have learned that the young boy who drowned trying to escape Syria was named Aylan Kurdi. Names are important.

I think about the value of being known by name nearly every day. It matters to me when someone remembers my name and even more when they learn how to spell it. Erinn with two n’s is rare. When someone comes to The Dale the first thing we try to do is learn their name. One of my friends Michael talks about how he knew The Dale was a safe space away from the street when we took him by surprise and called him by name.

We all have an innate need to be known. Being known goes deeper than simply remembering one’s name though. We might be able to identify a celebrity by name, but know nothing about them as a person. This is where it gets messy. Authentic relationships are built when we are willing to reveal ourselves. Underneath our exteriors (whatever that exterior might look like) are complex emotions, failures and longings that we fear will be too much for anyone else to handle. That which we want most can also be the most terrifying.

This fear can flow into the way we take care of one another. Though we were designed to live in community we often don’t. Or we do, just in homogenous groups that we design to feel comfortable and very safe. We are called though to feed those who are hungry, clothe those who are naked, visit those who are sick and imprisoned and show hospitality to those in need. Remember too that each of us will take turns being the one who requires help.

I am convinced that if people consistently opened their doors to people like Aylan or my friend Michael, our world would look very different. A radical shift in our culture is necessary for this to happen. Maybe the start is learning one another’s names.