When You’re Not the One Who’s Sick

I, at least to my knowledge, am physically healthy. My husband Dion is not. 17 years ago he was diagnosed with Multiple Sclerosis, known commonly and simply as MS.

I remember the day that Dion was struck with the first symptom: his whole side went numb. At that time we were engaged to be married. I watched him go through a battery of tests only to be told, “it could be one of two things: MS or a pinched nerve”. I desperately wanted it to be the latter.

Since Dion’s diagnosis we have endeavoured to not allow MS define him or us, though it has been an unwelcome piece of our entire marriage. The reality is that it has left and continues to create an indelible mark. Dion cannot run around the park with our daughter Cate. We cannot go for walks. Dion faces severe fatigue. We are likely needing to install a stair lift sooner rather than later in order to remain comfortably in our house- the only house Cate has ever known. Things that most of us take for granted, like putting on our own socks without getting exhausted, are the norm for Dion.

People look at Dion and can get that his body is facing limitations. He has been increasingly open and transparent about what this disease has taken from him. In the process we have also learned how to better communicate through this as a couple. Dion often says that MS is actually our disease. In many ways he is right, except that I can still feel my body.

I have no idea why Dion has MS and I don’t. I hate being able to do things that he can’t. I struggle with balancing the weight of my responsibility for Dion, Cate, our home and my work. I want to do it all well and then I get overwhelmed. I desire to help Dion in the ways he needs it and give him the space to do what he can still manage and sometimes I get wrong which is which. So often people tell me I look and act so strong, which is lovely, except that it masks my need for help and the amount of sorrow I carry. I need people to pray for Dion. And I need, though I am not sick, for people to pray for me.

Being the “healthy” (read: physically healthy) one has its challenges. It is difficult saying this because I fear it might sound like I am belittling what Dion is going through. I don’t. Every day I watch the person I chose to spend my life with struggle. I get to see first hand the brutality of having MS. I also get to witness how Dion is being healed in other ways through this illness. He is being transformed emotionally and spiritually and is helping me experience the same.

I would very truly switch places with Dion if I could. I long to take it all away. Even if it was for just a moment, a moment where he could chase Cate around the block or even just feel my hand in his.

“My life is all kinds of crazy”. That’s a line I hear a lot around The Dale. The more I hear it, the more I am convinced that this is true for all of us. Life is this wild ride of things that can be good, bad and everything in between. There is a time for everything: a time to weep and laugh, mourn and dance, be silent and speak. I don’t know about you, but for me the various times often overlap, rarely being entirely one or the other.

I feel so privileged to be entrusted with people’s stories of life. Some days I hear story after story, each one full of various regrets and loss, peppered with joy and glimpses of hope. More and more I am being asked to share these stories (most times leaving out identifying facts) by the community. I do this with caution, feeling the weight of responsibility to not misrepresent my people. I know though that they are entrusting me to be, in many ways, their voice.

With that in mind, consider the current reality of some of my friends:

: “Sarah” is completing community hours at the drop-in so that her charges will be dismissed by the court. The closer she gets to freedom, the easier it is to relapse into addiction and the sex trade. Pray for her. The good news is that she loves working in our kitchen and asked if we would “let her” continue helping out. The answer is an emphatic YES.

: “Dave” is dealing with serious health issues that have plagued him for years. And by dealing, I mean finally not ignoring them. Dave has buried every single one of his family members, making his getting help a huge step.

: “Harry” has found someone to love and is amazed that she loves him back. The two cannot be together right now because she has been hospitalized for mental health issues. He looks at pictures of them from last summer when she was able to laugh and smile, hanging on to the hope that this summer might bring the same.

: “William’s” alcoholism is eating away at his health. He is exhausted from sleeping in stairwells and longs to have a different kind of life. For years he has needed to ask me/The Dale for money, tokens and food. Today he handed me a twenty-dollar bill. I couldn’t refuse, knowing this was an opportunity for him to be the giver instead of receiver. He walked away with a spring in his step.

Such circumstances might seem completely foreign to some of you. That’s understandable. Notice though in each story how the light meets challenge: there is an element of hope in each, however little it might seem. When I consider my own story I see the same. There is a time to mourn and a time to dance, and as another author once put it, sometimes it’s the same time.

 

 

 

 

Here to Thrive

Our homelessness was born out of necessity and is now one of our greatest gifts. This is the story I need to tell about The Dale.

During the early summer of 2012 The Dale moved out of what had been our home for years. We didn’t have anywhere to go, except we knew we must continue to gather as a community. I recall saying, “if we have to, we’ll host our drop-in in the park” and I meant it.

Since that time we have found new places to gather around the neighbourhood. Relationship and partnership have sustained and strengthened us. Various organizations generously opened their doors, including: St Francis Table, Sketch, Parkdale Community Health Centre, The Jeremiah Community, Epiphany and St Mark Anglican and Bonar Parkdale Presbyterian Church. We got creative and decided to meet in unexpected places such as the back of The Salvation Army Thrift Store. A home also known as Junia House became a meeting place and occasional host to Board meetings and even baking parties. We wander the streets, visit on park benches and frequent a large number of coffee shops. We host a Bible Study in a Coffee Time which has generously waived the maximum loitering limit. We are, in a word, mobile. This mobility means that the neighbourhood knows us in a whole new way and us, it.

With this in mind, it has become clear that the next step for The Dale does not include finding a building large enough to fit everything we do. We are dreaming about maybe a storefront or a small Winnebago. Either way, we will remain committed to being a presence that roams. By being a church without our own walls we have increased our visibility and yes, our viability. The money we save by not having to manage the general upkeep and day-to-day costs of a building is huge. Instead, we can use it to staff and run programming that directly impacts our community. With additional money we can do more of the same.

Are there challenges? Absolutely. I don’t carry keys (other than a few internal ones) to a single building that we use. Our storage is minimal. People need to remember where to find us on any given day. I will be the first to admit that some days my own optimism gets worn down by these limitations. Though I suspect everyone can, to some degree, relate to that feeling. The truth is, these cons pale in comparison to the very real pros of our situation, which include that our friends who know transience see that we have learned about it too; that we are working together with more and more groups; that we know our neighbours better, including residents, store owners and even the police; that we do a lot with very little.

Homelessness is not something I would hope for anyone. I long to see its end. I am grateful that The Dale can stand alongside so many who are under-housed in a different kind of solidarity now because of our own limited experience. In that sense, our homelessness is a gift. I believe too that it has led us to a clarity of vision and mission. We survived a terrible crisis and are stronger now. We are here to thrive.