This past weekend I marched in the Toronto Women’s March.  Unless you have been living under a rock for the last week or so you are probably aware of the pink pussy hat.   The pink pussy hat was the hat of the march and was worn in solidarity with women, and in protest to President Trump.

The pink pussy hat is based on a very simple knitting pattern requiring only two stitches – knit and purl.  The hat is knitted in a square and the sides are sewn to form a hat.  When you put it on your head ears pop out.

I speed knit a hat on friday evening  in order to wear it saturday morning.  The gauge was off and the hat was too big.  I had enormous ears!  Oh well.

As a knitter I have always seen knitting as a way to make beautiful and useful creations.  It is a practical skill that creates hats, mitts, blankets, and sweaters.  Knitting is a form of spiritual care in many churches via the prayer shawl ministry.  Lovely shawls are created and offered to members of the congregation when ill or experiencing a difficult time. I received one years ago when Matthew was ill.

I know women who knit as a contemplative practice or a means to manage anxiety.   For example I know a women who knits when her medically complex child is in hospital – which is often.  The act of knitting focuses her attention on something constructive and manageable in the chaotic swirl of the hospital.  She once told me that the repetitive nature of the work grounds her when all else feels out of the control.

Knitting can be a form of social activism.  I know many who knit warm hats, mitts, and scarves to help people who are homeless during cold Canadian winters.  Communities knit afghans and garments last year for Syrian refugees arriving to experience their first Canadian winter.  During Canada’s participation in the two world wars last century thousands of women knit socks to ensure soldiers and sons had warm feet.

And now with the pink pussy hat we have knitting as a form of protest.  To me, it seems perfect that an activity largely seen as a feminine task became a rallying point to protest an American president who is so anti-woman.

On Saturday, January 21, 2017 I joined approximately 6 million women, men, and children globally by participating in the Toronto Women’s March.   It was my first protest. Like many participants I marched for many reasons. I marched because I wanted to walk in solidarity with my sisters south of the border who now live with a leader who is openly misogynistic. I marched because I wanted to express my disapproval of a leader who believes that lies, hate, xenophobia, and intolerance are an acceptable pathway to economic prosperity. I marched to show solidarity with my LGBTQ friends and express my disapproval of a leader who is openly homophobic. I marched because I wanted express alliance with my hijab-wearing sisters who now live in fear because we have a world leader who has normalized hate and Islamophobia. I marched because I wanted to express my absolute revulsion at a leader who openly brags about assaulting women and seems to treat women as little more than decorative objects.

 

But mostly I marched for my son. My son has cerebral palsy and the United States just elected a leader who openly mocked a reporter with a disability, because of his disability.  This is not okay. It will never, ever be okay.  I will not accept a world that sees people with disabilities as less than valuable citizens worthy of respect and full inclusion. My son deserves respect and as long as I breathe I will not accept such disrespectful behavior from anybody regardless of his or her position or power.  I most certainly do not accept such behaviour from a world leader.

 

I have always been someone who has held strong beliefs about a broad range of environmental, political, human rights, and social justice issues. Thank you Mr. Trump for reminding me that simply believing something is not enough. Sometimes we need to act and we need to speak. I will not remain silent in a world that tolerates such behaviour and belief.

 

 

Last night I returned home from a soccer game to touch base with Matthew’s nurse before she signed off for the day.  Matthew had had a good day.  Perhaps he was a bit congested but nothing alarming.  At 7pm I agreed.  By 9pm I was less convinced.  As Matthew is prone to do, in about two hours his conditioned deteriorated.  His temperature climbed and his oxygen saturation levels dropped.  Two things we don’t like to see.  His breathing became laboured.  Eventually he fell into a fitful sleep.  I spent the night dozing on the floor next to his bed.

 

Last evening I wanted to go to my computer and ask Google, “when do I panic?”.  It doesn’t matter that as a veteran parent I am infinitely more capable of assessing my son that Google.  It was just, in that moment, that I felt alone and worried and I wanted someone to tell me that it was okay to be concerned.  Matthew looked quite sick, but the seasoned caregiver in me knew it wasn’t time to panic yet.  We threw a bunch of drugs at him to address his assorted symptoms and he settled.  I know from years of experience that the longer we can manage his care at home the better.  Hospitals, while necessary once a line is crossed, complicate many issues and add layers of concerns.

 

So while I didn’t ask Google what to do, I did reach out on Facebook for support from my community.  In that precise moment what I needed was to simply feel less alone in my anxiety riddled space.  And my Facebook community responded in abundance.  In less than 30 minutes of my post sharing that Matthew was sick and that I would appreciate prayers or happy thoughts, I had a list of friends reaching out with offers of support.  Prayers and virtual hugs were offered.  A friend, who is also a family doc, recommended a PRN glass of wine to tamp down my anxiety.  Another friend offered to bring coffee by if it looked like I would be up all night.  For the record, that friend lives 40 MINUTES from our house!  Other friends indicated they would be by for a quick visit in the morning. My mom let me know that if we went to the hospital she could meet me there. Facebook, in the moment, was valuable in reducing my sense of anxiety and isolation.   Prayers were offered from Waterloo, Ontario to Kenya.  The whole experience was both humbling and uplifting.  In that moment when I needed to not feel alone I was reminded that I had tons of friends who cared about Matthew, me, and my family.

 

Deanna Thompson, the author I mentioned in my last post, has written a book The Virtual Body of Christ in which she explores the role of virtual communication and technology in supporting community.  At least that what Amazon suggests.  I haven’t read the book yet, but it is on my list of things I want to read.

 

So while Facebook is often the source of updates on Trump,  the Kardashians, dancing farmers, and cute kittens, it also can be quite powerful in terms of nurturing and supporting community.  Last night I was grateful for Facebook friends!

I have always been someone who enjoys reading.  Returning to doctoral work has ensured that I am never without something to read!  These days I am wading through the likes of Kant, Heidegger, Nietzche, and Camus, to name a few.  I am not a philosopher by any means so most of the reading makes my brain hurt.

 

But while developing a reading list with my advisor, and knowing my interest in illness/disability narratives, he mentioned the book Hoping for More: Having Cancer, Talking Faith, and Accepting Grace by Deanna Thompson.  I read it this past week as a form of respite from Heidegger and if you are interested in illness and faith journeys I cannot recommend the book enough.

 

The book begins with Thompson, a theologian, wife, and mother,  discovering she has stage IV breast cancer.  As she grimly notes there is no stage V and only 20% of those diagnosed survive beyond the five year mark.  The book describes much of her first year of life and treatment.  She writes openly about her journey with fear and debilitating illness.  She also writes openly about moments of community, hope, and grace.

 

While there is much about the book that I loved, what I most admired about the book is that she is painfully honest about the chaos narrative.  Her story could have easily been written as a quest narrative – one that overcomes illness and disability with a story of spiritual triumph.  But yet she resists doing this –  particularly noteworthy because  her story could easily be called miraculous.  She is a theologian and a deeply faithful women.  Within moments of her diagnosis massive communities are mobilized in prayer and active support. And within a year of treatment readers learn that her cancer markers fall into remission, and to the best of our understanding five years post diagnosis she is living well with cancer.   It could have been easy for Thompson to focus on the miraculous, have-faith-and-God-answers, part of her story.  But she does not.

 

 

Thompson writes a chapter entitled “The Trouble with Miracles”.  In this chapter she admits that her story could be called miraculous, but unlike those who subscribe to the prosperity gospel and its ilk she is clear that she is no more deserving of a miracle than the hundreds of thousands of people who live with, and die with, cancer and other horrible illnesses.  And while I am glad for her miracle, and am saddened by stories without one, I am grateful that she is honest about the capriciousness of life.

 

As someone who feels that much of the last 18 years of my life has been a journey with chaos I am always grateful to find stories that are honest about a chaotic life.  These stories are very affirming since they are not usually part of our collective narrative.   And while Thompson’s story is clear about the chaos, she eloquently shares that even amid the most extreme chaos there can be glimmers of grace and hope.  Simply put, while she is honest that life with cancer sucks, she does not leave the reader in despair.  If you are interested in stories of faith, hope, illness, and chaos, I cannot recommend Hoping for More enough.