This far

It’s 1 in the morning and I’m lying in bed unable to sleep.

My head is killing me. I’ve taken super strength Tylenol and a couple doses of Advil but i can still hear the blood pulsing in my ears and my brain feels pinched.

Falling asleep is usually a slow process for me and so I replay things in my mind to unwind. Then I move on to imagining the things I’m looking forward to. I fall asleep most nights visualizing my hopes.

But lately every future plan is tinged with fear. Hope is replaced with apprehension. I flip through my usual bedtime thoughts to try to find one that’s calming but come up empty handed.

How can life go on like this? How can we survive being trapped by this pandemic indefinitely? There has to be a breaking point, and surely it must be soon. This is untenable.

I flip onto my back and cry out to God – I can’t sleep. All I have in my head is pain and fear. What am I supposed to do? I’m stressed and restless and can’t sleep.

As soon as I voice it, I remember a conversation I had with my husband a couple weeks ago.

I told him “help me remember that when I’m feeling stressed and restless those are symptoms that I need more oxygen. I can’t recognize it myself when I’m in it.”

Immediately I realize that’s the problem so I flip on the light, grab my breathing bag (technically called a Lung Volume Recruitment kit) and pump up my lungs. And oh goodness does it hurt. It feels like lightning in my brain. I swoon a little, but then breathe normally. Obviously my lungs had been restricted for some time.

A couple more pumps and the tension is gone from my body, the headache has subsided considerably, and my mind is clear.

As I sit, enjoying the air, I see the embroidered wall hanging beside my bed. Bis hierher hat uns der Herr geholfen!

When I was young, it seemed all the women in my family had some sort of embroidered German saying hanging on their walls. Often they were scripture. Our move into this house last year coincided with my parents downsizing and my mom offered me this embroidery, made by my Oma years ago. When I received it I felt like I had finally graduated to full and proper adulthood.

But in this moment that’s not what struck me about the embroidery.

Bis hierher hat uns der Herr geholfen!

Thus far the Lord has helped us!

It’s from 1 Samuel 7:12 and it’s true. He has brought me this far.

In my pain addled, oxygen deprived brain I called out to God and told him my problem. “I’m stressed and restless!” And in my prayer, was the answer I needed. I needed someone to help me recognize my symptoms. I needed someone with me.

He is with me and he has brought me this far. Together we’ll move through whatever else is coming.

The view from my bed: the wall hanging, my pineapple lamp, and my mini-me doll. All things that make me happy.

Let it be

A close-up if my hands holding knitting while sitting on the couch. Beside me on the couch is a ukulele and an iPad
There’s a lot of knitting and singing going in my life right now.

This is the hardest part of the pandemic for me. It feels like a personal hour of darkness.

At the beginning, everyone slowed to the speed of the most vulnerable. The whole world stepped into my shoes for a moment and it was comfortable.

Now though they’re stepping out into the world and moving on. To them it feels like small steps but for me those steps are insurmountable.

I’m feeling left behind. As the world opens up, my world closes in. As other people have more contact points in their social circles I feel the need to withdraw from the few points of contact I had. The risk is just too high that contracting COVID-19 would seriously damage me, or worse.

I know other disabled and immunocompromised people are feeling it too.

As I withdraw I have been finding comfort in music. I’ve been playing ukulele and singing pretty much every day and I’ve been turning to some old favourites. Worship choruses that I used to sing at youth group, songs by Delirious? and the Newsboys, and hymns from my childhood.

One song, more than the rest, comforts me in this time – Let It Be by the Beatles.

As I sing it (over and over because I’m working on my finger picking) I think about the words and what they mean. 

It speaks of broken-hearted people being parted, which resonates deeply. 

Times of trouble are evident in the world at large when I check the news each night. 

My social media feed is filled with stories of hope, like a light shining through a cloudy night. 

I don’t know exactly what Paul McCartney meant when he wrote all these words; I once read he was inspired by a dream about his mother, Mary. But the lyrics make me think about the other, more famous mother Mary. 

Jesus’ mother.

When Gabriel came to her with the news that she would give birth to God’s son she gave a simple response to such a complicated task. “Here am I, the servant of the Lord; let it bewith me according to your word.” (Luke 1:38 NRSV, emphasis added)

Compared to mothering the Saviour of the world, navigating the lifting of pandemic restrictions right now seems downright simple. However, it impacts work life, home life, and relationships and there are no instructions on how to figure it out well. It certainly doesn’t feel simple and there is no end in sight. 

I pray that I would approach this complicated task with a similar heart posture to Mary’s. If I keep her words of wisdom in mind, perhaps I can just trust God and let it be.

(Crossposted to the Disability & Faith Forum.)

June = Myasthenia Gravis Awareness

June is Myasthenia Gravis awareness month.

Every June for the past 5 years, I’ve thought about writing something but always come up short, because what is worth saying?

A photo from behind as I walk down a path on a sunny summer day, using my cane.
Having Myasthenia Gravis means sometimes I use a cane,

Should I share my diagnosis story? Should I try to detail all the ways Myasthenia Gravis has shifted the direction of my life? Should I list the symptoms so people might be better able to recognize it in themselves or others?

A photo from behind as I walk down a large hallway at the National Art Gallery while using my walker.
sometimes I use a walker,

My diagnosis was swift and too long ago to matter. My life has shifted considerably but that is relevant to no one but me. Symptoms you can google and find an exhaustive list.

I’m giving a presentation while sitting on my walker and wearing dark sunglasses.
sometimes I wear sunglasses indoors, and sometimes I add an eyepatch,

Those things are not worth sharing today. The awareness I hope people gain is that not all disabilities are visible. Not every illness has a cure. Pain sometimes just persists. That’s the way it is.

I’m sitting in a recliner chair in hospital while having an IVIG infusion. My daughter is 3 years old and is sitting with me.
sometimes I get infusions in the hospital,

Recognize that there are people you pass every day in your regular routines who are carrying heavy burdens that go unseen.

A close up photo of infusion tubes hanging out the bottom of my shirt as I’m standing on a sidewalk.
sometimes I do my infusions myself as I run errands,

Don’t judge the person using an accessible parking space who looks “fine.” They may be able to make it into the store but are unsure if they’ll be able to make it back, and know that saving those few extra steps might make the difference.

Don’t begrudge that woman you see take the elevator even though it’s only one floor. Maybe she can walk fine on flat ground but not up stairs.

Don’t assume that man is using the accessible stall in the bathroom because he just wants more space. He may not be able to get up off a toilet without using grab bars even though he looks no different than you.

Don’t accuse that young person of faking it, or carrying a cane just for attention. They may never know when their legs might fail and drop them to the ground.

Don’t give the stink-eye to that teenager sitting in the priority seating area on public transit. He might be barely able to sit upright today, let alone stand.

Don’t assume that lady in the checkout line is a bitch because she seems unfriendly and impatient. She might be in excruciating pain and is just trying to survive the day.

I’m smiling at the camera but my face looks a little crooked.
sometimes my face feels droopy and lopsided,

Realize that not every experience is like yours. And that’s okay.

Be patient.

Give the benefit of the doubt.

Listen when people tell you their stories, even though you may have never experienced what they’re describing.

Bodies, like people, are diverse and we need to make space for each other as we move through the world.

Because we are better together.

I’m holding my 6 year old daughter and we’re both smiling at the camera.
and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.

The Gift of Blood

We dragged a patchwork blanket onto the front lawn and had a “read under a tree” date. Ever since she was little my daughter has loved to read under trees, and since being inside is getting a little old after two months of quarantine, this was a perfect afternoon activity.

Patchwork blankets lie on the grass.  A book, some pop cans, and a small bag with  medical tubes coming  from  a syringe also lies on the blanket.

We read a chapter of Peter Pan out loud (so good! If you have never read it you are seriously missing out) and then settled in to our own individual books for a bit of quiet. She opened a favourite comic book and I returned to Fearfully and Wonderfully: the Marvel of Bearing God’s Image. Every chapter gives me so much to think about, it’s taking a while.

This day the chapter was about blood.

Blood is something I am well acquainted with as a diabetic. Until a few months ago (when I got new technology) I would prick my fingers up to 10 times a day to test the glucose in my blood. The sight and taste of my own blood is familiar and reassuring. It’s part of me and interacting with it is no different than washing my face or brushing my hair.

Diabetics everywhere rejoiced when a recent emoji update included a syringe and a bright red blood drop. Finally one of the biggest parts of our daily routine was represented in this new language on our phones.

A close up of a book in the foreground , a person’s body and hand in the background.  Medical infusion tubes lay across the book.

When my sugar is high my blood feels thick and poisonous. I ache all over. My movements are slow and exhausting. I know from reading about diabetes that when my sugar is high my blood can become acidic. I know from experience that if it gets high enough it makes my kidneys hurt.

All of this makes me appreciate the blood that flows through me, keeps me alive, and warns me when things are wrong.

When I underwent plasmapharesis to stabilize my Myasthenia Gravis before surgery I saw my blood in a new way. With tubes in each elbow I watched dark red blood come out one elbow, enter a large loud machine, and return to my body through the other elbow. Large glass bottles, filled with plasma the colour of champagne, hung at the end of my bed and were quickly drained as they were added to the mixture going back into me. When I got up after three hours I’d see the bag of my old plasma hanging above the head of the hospital bed. Cloudy, like homemade apple juice with particles still in.

I hated that process more than anything in my life and it made me appreciate my kidneys and the way my body cares for my blood on a daily basis.

A close up of a book with the headng “Transfusions.”  Medical infusion tubes lay across the book.

As I lay reading in the sun on the lawn I came to the middle of the chapter where Dr. Brand starts to write about transfusions.

He explained how transfusions work. He explained how vaccinations and inoculations work. That they take the “blood of an overcomer” and introduce it to a sick body to lend it the strength it needs to fight infection.

A close up of my side.  Needles can be seen taped to my hip.  I am holding and reading the book “Fearfully and Wonderfully: The Marvel of Bearing God’s Image” by Philip Yancey and Dr. Paul Brand

As I lay in the sun I was very aware of my infusion kit lying beside me, of the needles taped to my bare skin where my shirt had risen up, of the antibodies pumping slowly into me. Other people’s blood, processed and refined, mixing with mine. Lending me the strength to live.

I am so grateful for those who willingly give their blood for people like me. They don’t know the stories of everyone who may benefit from their gift but they recognize the powerful potential of their blood, not just for themselves but for others. And they give freely.

Amazing.

Green leaves on tree branches against a blue sky.  The sun shines through.

Myasthenia metaphors – A Mouse, An Elephant, and A Cat (or, The Gift of Pain)

Chronic pain is my constant companion, like an unwelcome shadow that follows me everywhere I go. Sometimes it hovers just at the edge of my mind, like a mouse hiding in the cupboards, small and subtle enough that I can ignore it. Other times it’s like an elephant sitting on my chest, immobilizing and forcing me to think of absolutely nothing else. Usually, it’s more like a cat.

Just like a cat presses against and curls around you while you’re engrossed in a task, my pain makes itself known as I move through my day.

And just like a cat leaps away from your hand the moment you’re free to give it the attention it demands, my pain often hides as soon as I can spare a minute to devote to it.

But once I’m engaged in my next task it’s back, wrapping around me, threatening to trip me up and bring me crashing down.

Whether a mouse, an elephant, or a cat, it is never welcome in my home.

Until a few weeks ago. My perspective changed when I was reading Fearfully and Wonderfully: The Marvel of Bearing God’s Image by Dr. Paul Brand and Philip Yancey.

Dr. Brand is a leprosy specialist and he explains that leprosy ravages the body by deadening the nerves.  As nerves die in various body parts patients are unable to feel pain and so, unknowingly, damage themselves.  Their hands and feet get bumped, burned, or scraped and because it goes unnoticed the wounds fester.  The eyes fail to tear and to blink but because there’s no discomfort, the eye dries out and the person is blinded. 

The lack of pain means a lack of response to danger and consequently the body slowly, piece by piece, disintegrates.

This realization made me appreciate my physical pain because I know that it serves as an alarm system. When my spine is screaming I lie down. When my eyes ache from the strain of using them, I rest them. My body tells me what it needs and I respond. I respond and the pain subsides.

I never thought I would appreciate the gift of pain.

Me sitting on my walker, wearing a red dress and dark sunglasses while gesturing with my hands and talking    A  slide on the screen behind me says “Disability and Faith” and has my name
While presenting a workshop at a conference a few months ago pain is what told me to sit rather than stand, and to wear my sunglasses indoors. And I’m glad for that because it meant I made it through the whole day and enjoyed learning from all the other presenters.

An alternate version of this post appears on the Disability and Faith Forum

Spiritual practices in times of crisis and solitude

This pandemic means living a small, quiet life at home which gives me more time to think. It also means everyone else is also home so my ideas are half-baked and rarely get out of my head, into words. So although I have many thoughts I haven’t been writing here much.

I have been writing a bit for work though which has been new for me.

For the first few weeks of the pandemic I stayed home and used vacation time. We didn’t know how long this would last, all my work evaporated (I was helping to run two conferences in April which were both cancelled), and I knew I didn’t want to be exposed to the virus so I started self-isolating right away.

As time went on though and we all started settling into new routines, people were redeployed to different departments and I was assigned to help the spiritual care team at work.

It has been a pleasure and a challenge to dig deep and share some of what I’ve learned over the past few years. (The technology side of it has also been a challenge at times but I’ve learned a few tricks which is nice.)

So far I’ve had two stories/articles published and I am particularly proud of the most recent so I’m going to copy and paste it here so that I’ll always have it.

The inside of Notre dame cathedral in Montreal. It’s backlit in purple and blue and is beautiful.


Raised in a Pentecostal Christian faith tradition, growing up my faith habits were both communal and personal. We met together for corporate worship on Sundays and at mid-week small group meetings but most of the rest of the time my worship was individual and internal. I read my Bible, formulated my prayers in my own words in my mind, and reflected on what I had learned at church.

When I hit a time of crisis and solitude several years ago I found that these learned patterns were not enough to sustain my faith. My mind was too full of anger and fear to formulate prayers made of words. My heart was full of doubts that I wasn’t ready to expose to others yet. My body failed me in ways that meant I couldn’t participate in church as usual.

It felt as though my belief system was crumbling. I no longer had a polished faith, easily articulated and defendable.

I realized what I needed were spiritual practices that could bear the weight of my burden. I needed practices that I could practise as I struggled through my time of crisis.

Slowly I collected and built a repertoire of practices that allowed me to connect with God using my body as well as my mind and soul. During the time of COVID-19, many of us are experiencing solitude or the loss of communal, in-person worship in new ways. For some, this might bring on existential questions and struggles with doubt. I hope that these spiritual practices will help others in the ways that they have helped me.

  • Find anchors in your daily life. They can be traditional prayer anchors such as saying grace before meals, or praying before bed, but they can also be personalized to your life. Filling your favourite mug with hot coffee every morning can be a moment to thank God for warmth and small comforts in your life.
  • Read the scriptures in a way you haven’t before. Try a new translation, or paraphrase like The Message. Listen to the Bible as an audiobook. Read or listen to The Story, an abridged version of the Bible that weaves all the pieces into one cohesive narrative. Go for something really creative like The Word on The Street or The Action Bible.
  • Light a candle as an invitation to the Holy Spirit to enter your home and your life. The presence of the flame throughout the day can be a constant reminder of the Spirit’s presence with you.
  • Intentionally follow people on social media who you find uplifting and encouraging in your faith. Pope Francis tweets regularly. Scott Erickson posts wonderful art using the tag #spiritualformation on both Instagram and Facebook. Dion Oxford shares some beautiful insights and prayers on his blog. Little Way Chapel offers liturgies to do as a family in your home.
  • Use a tangible tool, like a rosary or prayer beads to keep your mind grounded as you pray. Alternatively, use your fingers. Pray for different people in your life, one person per finger.
  • Practise praying without words. If we can communicate with each other without using words (and we know we do) how much more so with our Creator? Prayer can be an image, a feeling, a memory, a song, or a scream. Let your heart call out to God.
  • Use breath prayers to practise the presence of God and reduce your anxiety. Ember Collective shares great examples, such as (inhale) The Lord is my refuge…, (exhale) I will trust in him… Breath is reminiscent of the creation of man, of God breathing life into dry bones, of the mighty rushing wind on the day of Pentecost. Breath is evidence of God within us.
  • Find podcasts that nourish your soul. If you’re grappling with doubts and are afraid to speak them aloud, hearing others have those difficult conversations can reassure you that you are not alone. If you struggle to put words to prayer, listening to someone else pray can give your heart something to resonate with.

I still don’t have faith perfected, and I never expect to, but I have found that leaning on spiritual practices that embody my whole self, and not just my intellect, has deepened my faith immensely. Given that incarnation is such a central concept of Christianity it makes sense that God would invite us to show up wholly present to commune with him. Let’s accept that invitation.

You can find the post here and another on Seeking Out the Prophetic Voices of People with Disabilities.

I’ve also updated my About page with links to any other writing of mine on the internet.

I’m going to try to sit down and actually get my thoughts out onto the page(/screen?) because when I do it, it feels good.

Oh the places you’ll (not) go – (Monday’s are for Memories)

Every day of this isolation it seems I remember another place I’ve been. Some are familiar, routine locations that I’ll go back to when this is over while others are from my distant past; places I’ll never return.

Right now they all feel the same – distant and unreachable. I started making a list:

  • McDonald’s
  • EB games in the mall near my house.
  • The little pet store beside Blockbuster in Gatineau that we visited a couple times over a decade ago while renting movies with friends.
  • My grandma’s condo.
  • A roadside cowboy themed souvenir and western wear shop along the trans Canada highway where I bought a rabbit skin when I was 17.
  • McDonald’s.
  • My friends’ house where we like to cook together and wrestle with the kids.
  • The Baskin Robbins where I always order peanut butter chocolate ice cream.
  • My local yarn store that sells hand dyed wool and Soak woolwash which I am running low on.
  • The London Children’s museum that I went to as a child with my family and on field trips, and then brought my own daughter to many years later.
  • McDonald’s.
  • My office with its comfy ergonomic chair and people to talk to.
  • A Christmas store in Frankenmuth that had the most diverse selection of ornaments I had ever seen and the hotel we stayed at nearby when Eleanor was a little, just-barely-walking, baby.
  • Camping with my parents in our tent trailer on Lake Erie when I was a kid.
  • The library on our way home from school/work where we visit with our favourite librarians.
  • Straßburg, France where I saw a double decker carousel that included a giraffe in its selection of animals, and we went to an Italian restaurant that put shrimp and curry on their Hawaiian pizza.
  • McDonald’s
Me sitting on my couch knitting.
The only location safe right now – I’ve got my knitting and my home and my family, which is really all I need.

… I think I’ll make burgers for dinner.

Penny’s Mandalas

I’ve written before about the knitting I inherited from a woman named Penny. (Post 1, Post 2, and Post 3.) She was a friend of a friend of my parents and she passed away suddenly with many unfinished projects on the go.

When this pandemic hit a few weeks ago and we went into isolation mode I went to the basement and dug through my bins of “Penny knitting” and pulled out this mostly-finished mandala sweater.

All the pieces laid out on the floor.

It was a kit made by Philosopher’s Wool complete with wool, pattern, buttons, and a tag to sew inside when complete. Apparently it was a gift from her kids.

Penny had completed 8 and a half squares so I only had one and a half left. I tried to analyze the completed squares to find a rhyme and reason to the colour changes but it seemed to be random so I continued, randomly.

Once I sewed them all together I realized I needed to cut steeks to create a round neckline. The instructions said to machine stitch two lines but since I don’t have a sewing machine I backstitched with wool and then did a crochet chain to secure it. I left the cutting until the end (because it freaks me out to cut knitting.)

Steeks reinforced, neckline done, preparing to cut.

I picked up stitches for the waist, neck, wrists and button bands. …and then I realized I forgot to size down my needles so I added a couple crochet chains on the inside of the neckline and button band to cinch them in a bit tighter so they’ll lay flatter.

And then I finally cut the steek, and stitched down the inner facing.

In the end, I think it all looks pretty good. I never would have chosen this sweater on my own but it was a fun challenge to figure it out.

This is the card that came with the kit. There’s a happy birthday message written on the reverse.

And it was nice to have a project the keep my mind and hands busy during this weird time of busy inactivity.

Social distance

The world is weird right now. Covid-19 is tearing across the planet and I wasn’t anxious about it until I heard the stories out of Italy.

Doctors are being forced to choose who to save and who to let die because there aren’t enough ventilators for everyone who needs one.

And that scared me.

Illness isn’t so scary to me because it’s a constant companion and I expect it. I’ve been sick, I am sick, I will be sick. And the medical system has fixed me, it keeps me alive, and I’ve always just had this faith that it will be there for me in a crisis.

So hearing that health care systems are overwhelmed and are needing to triage patients was a shock. I know I would not do well in a triage situation because I have underlying health problems that would make recovery take longer than an average person.

And I support that. If you could save two or three people in the time it would take me to get off a ventilator, then don’t give it to me. Star Trek gets it: “The needs of the many outweigh the needs of the few, or the one.”

And at least I’m prepared. I live daily so that if I die I’ll have no regrets. I try my best to prepare the people around me to be alright without me.

That said, I’d rather not go now. As much as I’m proud of how well I’ve taught my daughter about life and death and faith and God and kindness and love, the simple fact is that no child is okay when they lose a parent young.

So we’ve been social distancing this week. We play card games, read Harry Potter, watch movies (I signed up for Disney+ yesterday), clean light switches and knobs, bake bread, walk outside, and wash our hands a lot.

And it’s fine. I know a lot of people are finding it stressful to stay in their homes so much but I feel like chronic illness has prepared me well for this.

I had two years off work when I was too unwell to do much so I have mastered the art of occupying not only my time, but also my daughter’s, without going out.

Like the homeschooling parents I see on social media who are clearly unfazed by having their kids home, I see people with chronic illness similarly comfortable with the task of isolation.

We social distance all the time. We self-isolate routinely out of necessity, to protect ourselves from all viruses, and burnout, and spaces that are inaccessible to us. This is not new to us, it’s just on a larger scale.

I think that this experience will generate more understanding and empathy, going forward, for people who are immunocompromised and always vulnerable. The ones who routinely feel the way the general population does right now.

I’ll be glad when this is over and life can go back to normal. I miss McDonald’s and thrift stores and seeing my friends, but for now I’ll enjoy my kitchen and yarn and books and my family. I have all I need.

A candle burning in front of a fireplace    In the glas you can see a reflection of me sitting on the floor and a laundry basket full of clothes in the background
I made candles the first day we were home and then we used one for a St. Patrick’s day liturgy shared online by littlewaychapel.

Mondays are for memories – popcorn and apples

I was five years old and it was summer time. We were in the process of moving from our triplex in the city, to a farm. I know it had always been my parents dream/plan to move to the country.

My dad and I had driven out to the farm because he needed to talk to the owner, Manno. I sat in the car with the windows down and waited for him to come back.

Parked on the front lawn, I was close to the little sidewalk that ran around the house and to the door in the porch. There was a girl, younger than me, sweeping.

Manno and Matti had 10 children, and this was their youngest, Esther. I don’t remember meeting her but someone must have introduced us, at least from afar, because I knew her name. I liked that her first name was my middle name.

She didn’t talk to me. I don’t remember if I talked to her. I probably did, but I’ve found most Amish children are quiet when they meet outsiders. She just watched me as she swept the sidewalk and I watched her through the open car window.

I was eating pink popcorn. The kind that comes in a white box with an elephant on the front. I offered her some. I held a handful out the window and dropped her broom, came over to the car and let me drop the pink puffs into her open hands. She ate it, still saying nothing.

Then she disappeared inside the house.

I listened to the birds, looked at the white bridal veil bush, felt the warm air, and wondered when my dad would come back.

Esther stepped out of the house with something in her hands.

It was an apple, broken in two by her mother. Not cut, but twisted and snapped into two equal halves, seeds and all.

She reached up and handed me half and we ate in silence. Watching each other. Never speaking.