Riding a bike with MG

I grew up in the country, riding bikes everywhere because everywhere was too far to walk to. I would ride to the creek and catch bugs or pull algae off the top of the standing water in the ditches. I would ride with my siblings down the big hill and feel the wind rush against our faces. We would meet up with friends and all ride together. I remember riding to a nearby cemetery with a friend for a picnic.

In the summer my parents would load all 6 of our bikes onto the trailer and bring them to camp. We would ride bikes to church every morning. (My dad installed a book carrier on the back for my Bible.) We rode around camp looking to see which trailer our friends’ bikes were piled outside so we’d know where the party was at. When we got a bit older we were allowed to ride off the camp property and into town to get McDonalds.

When I moved to the city I was nervous to ride alongside cars but I practised. My husband and I rode to church. We brought the bikes into our little apartment to store on the balcony. Somewhere along the way my bike broke and my husband’s was stolen and we didn’t bother replacing either but always planned to.

Then I got sick and I figured I would never ride again. If I’m too weak to walk without assistance, surely I couldn’t ride a bike.

But I’ve been feeling stronger the past year (thanks to the pandemic for letting me cut most of the physically difficult things out of my life) and decided I wanted to give it a try.

I’ve always wanted a retro-looking bike and when I read reviews, multiple grandmas raved about how comfortable they are. I knew that was what I needed.

Thankfully we were able to get three bikes, one for each member of our family, amidst the bike shortages and before the most recent lockdowns.

I was nervous that this would be a failed experiment but it turns out that my myasthenia gravis gets along quite well with bike riding.

The thing that’s hardest for me when walking long distances is holding my back upright. My postural muscles give out long before my legs do, which is why I hold on to a walker. Bike handlebars keep me upright the same way my walker does.

The most difficult type of motion for me is one that is repetitive. Walking in a shopping mall where every step is the same is much harder than walking outside where the texture of the ground is constantly changing. Biking has a lot of variation built in, (like hills and turns) and I can adjust my feet on the pedals to target different muscle groups.

It may be a small thing but because I thought I would never be able to ride a bike again, this feels miraculous to me.

We’ve been exploring the bike trails and neighborhoods near our house. This bike has a carrier on the back as well but now I carry a picnic instead of my Bible.

Come As You Are? (thoughts on healing)

Jasmine is walking away from the camera, using a rolling walker, as she goes down a long corridor into a large glass room with high glass ceilings.
When not using my cane, my other mobility aid of choice is my walker.

It seems in church circles, whenever the topic of disability is raised, the conversation turns to healing. Whether we’re examining the stories of Jesus healing people in the gospels or recounting miraculous stories we may have heard or seen in our own life experience there’s a fascination with physical cure through prayer.

The church I attend is doing a month-long series on disability right now and healing has come up frequently. Some of the kids in my parish are doing a book study together as part of this series. (We are reading Out Of My Mind by Sharon Draper.) Many of the themes from Sunday’s sermons are echoed in the book discussion questions.

I was privileged to help lead the kids book study this past week when the topic of healing came up. The characters in the book were praying that an unborn baby would be born healthy and without disability. We talked about the reasons why they might pray that way. In the end we concluded that no matter how the baby was born the parents would love it fully. Its ability or disability wouldn’t matter because it would be their child.

The conversation then turned to whether people with disabilities want to be healed/cured. The kids figured that each disabled person probably has their own feelings about that. You would need to get to know them to find out. (Wise children!)

I then told them two stories from my own life, related to healing, and asked them to guess which I preferred.

  • In the first, I was meeting with a woman at work to see if our companies might work well together. I met her in the lobby. As we walked to my office, she saw my cane and asked if I had injured myself. I explained that I have a neuromuscular disease. When we got to my office, instead of taking a seat she stood behind me and placed her hands on my neck. She began praying for a miraculous healing cure to happen right then and there. Her prayer was passionate and lasted several minutes. Finally, I told her I didn’t think we were going to have a miracle happen on the spot so maybe we should start our meeting.
  • The second story was about a day that my legs started strong but, as time went on, they became weaker and weaker. By the afternoon I was holding on to the walls, leaning heavily on my cane, and obviously struggling to walk. One of my coworkers saw me and asked whether he could add me to the prayer list at his church. I said “Yes, thank you! Can I tell you how I pray for myself? I pray that I will be patient when my body slows me down. That I will be calm when my pain makes me cranky. That I will still be a helpful partner to my husband and a good mother to my daughter.” He said that he would add those requests to the church prayer list.

The kids all guessed that I preferred the second interaction. They gave some of the reasons why they thought this way: my coworker knew me already, he asked me if it was okay, it was a conversation that I got to be part of, etc. My favourite answer came from a 10 year old girl named Rose. She said, “The lady assumed you didn’t like yourself the way you are!”

I wish that all of us had Rose’s insight into questions of prayer and healing in our churches. What would it look like if we welcomed one another as we are, and took the time to learn how to love each other well? Maybe we would all be a bit more comfortable in our own skin, and appreciate the diverse and beautiful ways that God has created us.


This post originally appeared on The Disability and Faith Forum as part of a series of posts in response to a month-long teaching series at The Meeting House on disability.

Myasthenia Metaphors – flamingo knees

If you ever see me wearing black knees braces and walking with a waddle it’s probably because I have flamingo knees.

Most of the time my knees are fine, but every once in a while all the muscles turn to jelly and my knee caps feel like they’re unsupported. They slowly drift further and further back as my knees begin to hyperextend.

The first time it happened was two months after I noticed my disease was generalizing – not only affecting my eyes. I didn’t use any mobility aids yet. My husband and I had taken a day off work to go Christmas shopping at the big mall downtown. We had split up for an hour and as I walked the pain became sharper and sharper, just in one knee.

I entered the drug store on the main level and went straight to the “old people aisle.” The one that housed braces, canes, extendable shower brushes, and all the things they advertise using grey-haired models.

I sat on the floor and tried on several braces until I found one that worked. I stood up and immediately felt better. I paid for the empty box and wore the brace right out of the store as I went to meet my husband.

For me, flamingo knees are triggered by walking on flat, uniform surfaces for an extended period of time. I can walk outside for an hour with just my cane and be fine. The unevenness of the ground provides enough variation in my gait that no one muscle is exhausted.

But places like the mall, IKEA, Home Depot, and Costco are a problem. Every step feels the same, uses the same stepping pattern, and stresses the exact same muscles. They start to wear out pretty quickly.

So now I know that even on a good day I will need my walker. (On a bad day I might use a motorized cart.) Which is fine with me because it’s got a basket and a seat which means I’m way more comfortable that everyone else standing in the checkout line line with their arms full.

Jasmine is walking in a snowy field wearing a black coat, black sunglassses,  and a red hat.  She is carrying a red cane and smiling at the camera.
Walking in the snow is not as tiring as you might think because every step feels different. Variety is good for me.

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

This body

I saw her in the mirror.

I had just had a hot bath as an attempt to soothe my aching muscles and I was getting dressed in the bathroom when I caught a glimpse of my bare shoulders in the mirror but it didn’t look like me.

Something about the way I moved, unencumbered by the big winter sweaters I’ve been wearing lately, made it very obvious.

I have my oma’s body.

I’ve always been told I look like her.

My great uncle would tell me as a child that I looked like his sister.

My parents tell me I am another Alma. A couple years ago my dad woke up from a nap at my house and, in that half awake/half asleep state when you’re not entirely sure where you are, he was flashed back to his parents house. He heard his mother’s foot falls as I walked across the floor upstairs.

As I’m getting older I’m starting to see it. I have a mothers body, a middle aged body. Her body.

This was a particularly bad day for me in terms of weakness and pain and truth be told, I was crying as I got dressed in the bathroom. I felt so defeated. So worn down.

But I saw my oma’s body and I remembered what it endured.

She birthed 5 babies but only got to raise two of them.

She walked for seven months through war torn Germany, separated from her husband. She gave birth during that time while also burying her baby and her toddler.

She found her husband and moved across the ocean to live on a friend’s farm in Alberta. She lived in a barn.

She cleaned houses and banks. She raised 3 kids. She baked tortes and kuchen. She made things. (All the things.) She worked hard.

If her body carried all those pressures then surely it can carry my life now.

She was strong and this iteration of that body is strong. It will carry me through my days and it will get up again. And when it doesn’t, that’s okay too.

Physical strength is not the only kind that matters.

an old woman and an old man sitting on wooden chairs in a kitchen in the 1970s.

Pain

Labour pain was like fire.

Tooth pain strikes all the way down to my toes.

Hitting a nerve during my infusions takes my breath away.

Aseptic meningitis is the most horrific thing I’ve ever felt.

But my most common pain is the ache of Myasthenia Gravis.

Most medical articles on the internet say that there is no pain caused by MG but ask any myasthenic and they’ll tell you otherwise.

That skeleton-in-jello/listing-barn feeling isn’t comfortable. I feel my bones floating in the goo and the joints are unsupported. I bend over and every piece of my spine clicks into place as I move. My muscles strain to hold it there so I don’t end up on the floor, a pile of odd angles.

The joint pain is sharp, the muscle ache is dull, but neither is that strong.

So it’s not severe but what gets me is the pervasiveness and persistence of the pain.

It is all of me, it is relentless, and it is exhausting.

I’m physically fragile. I move slowly and minimally. I wince with each bend and reach. I breathe deep to move through the pain.

I’m fragile emotionally. Days of this put me constantly on the verge of tears, except for the few moments when they spill over. I’m disappointed at not being able to bear this better, to push through it more smoothly, to overcome it.

Because it’s not so bad, objectively. I’ve had worse and worn it better.

But life is not experienced objectively. The constant affront wears me down.

So I switch from regular life mode to recovery mode. I stay in, cancel engagements, slow down.

My daughter and I read library books in bed rather than play games. I rely on my husband for even more of the household chores.

I lay on the floor and stretch. I take hot baths and read. I increase the frequency of my medication, setting alarms so I never forget. I add extra painkillers into my routine.

I make appointments for chiropractic treatment and massage.

I take care of this old house that is my home, and I know that the pain will pass. It always does.

An 8 year old blonde girl stands in front of the ice in a skating rink. She is wearing skates, an aqua sweatshirt, and a hockey helmet with a wire face mask.

My one outing last weekend was to tag along while my husband ran a few errands and then watch skating lessons. I used an electric cart in the store, I trailed way behind my family on our way into the rink, but I got to see this lovely girl on the ice.