Multiple Sclerosis: Creating from the Chaos

Something is wrong.

You feel sick, in an unusual and significant way.

You see the doctor.
They don’t know.
You see another doctor. Do some tests, and get results. It shows that something is wrong.
You see the doctor again, they tell you to do to x, to take y. It helps, or it doesn’t.

It’s something in the leg, a maybe numbness or weakness or tremor, along with mental heaviness and fatigue; you google it and it could be a brain tumour or sleep deprivation or a vitamin deficiency or anxiety (everything goes back to anxiety, you know it runs in your family, you are afraid to talk to your family because it will only amplify anxiety.)

You are concerned. You don’t know how concerned to be, or if you’re going crazy and it’s something that’s ‘all in your head’  -- as if head and body are separate entities as if the things in your head aren’t real.

You try to deny it, to go on as normal, push through, except you can’t anymore.

You are trying.

You look online and read, looking for the answer that escapes you, the answer you are sure is there but you’re too tired to see it, too overwhelmed to understand. You follow internet click-trails and online rabbit holes, you are drowning in data and information and studies and forums and articles.

You make lists, you lose lists, you make lists again, on every piece every scrap of paper you see. Lists for what you Must Do and the emails to send, the doctors to call, and the monthly weekly daily priorities. You make lists for this moment (‘get up. go pee. eat an apple’) with words of encouragement (‘you got this one. just get up. go pee. you’re doing great) intermixed and mingled with a voice of anguish (‘I am losing my mind I am losing my mind losing I lost I what is my mind’).

And the feeling of living in this alien form overwhelms you, the things you knew before are no longer true; it's all too much and you don't know where to begin.

A new beginning

Something has happened, and your health has changed. Your life is not the same as it was, or how you imagined it would be.

Illness can be a chaotic and disruptive experience, especially when it doesn’t go away.

When I was first diagnosed with Multiple Sclerosis, I thought I was falling apart. My experience was one of brokenness and fragmentation. It felt like I was losing parts of myself as my physical and cognitive functioning changed. “I am losing my mind,” I wrote, trying to make sense of something I couldn’t name.

I wrote, and I began to discover new parts of myself through my writings.

At first, the sentences came out in scattered pieces, half-coherent and hard to read. I wrote out my pain and grief, and slowly found words to articulate my experience. The pain lessened and instead of catharsis, I was motivated by a sense of curiosity and joy. The ‘me’ who was writing was different from the ‘me’ I was before MS, but I liked this new self I was getting to know.

When it was too much to write, or I couldn’t find any words, I made watercolours and collages. Through collage, in particular, I found a way to put together the fragments and pieces of my thoughts – in this case, through using cut-up magazines. The old narrative of ‘how I lost my mind,’ was replaced by a journey of self-discovery, creative exploration, and meaning-making.

I still get anxious and overwhelmed. I’m not sure what ‘to-do’ and feel like I’m not doing enough. These feelings may never go away, but creative expression has given me a language and medium to grow through them.  

Life is chaotic and uncertain.
Life is also creation, wild and ever-emerging.

Let’s create together.