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.

Life outside

I saw a guy in the park by our house today practising martial arts style high kicks on the basketball court and it made me smile.

I love it when people live their lives outside in unusual ways. It’s like that feeling when you’re walking at night and you can see into people’s lit up houses and you get a glimpse of a whole internal world, maybe like yours but maybe not at all.

Our old house backed onto a big park and it felt like our own backyard. Evidently it felt that way to other people as well. I remember hearing strange music and going out on the balcony to see a guy practising on a wooden flute, like some sort of elf or fairy.

Another time there was a ninja moving through different stances with a long thin sword.

At the beach one day a bagpiper stood on a rock, playing loudly into the wind.

I love it all.

Exploring a small island a couple hours away from home this summer was a great way to live life outside.

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

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.)

Access, advocacy, & allies (part 3)

We ordered tickets a month in advance to go see Star Wars on opening weekend with friends. My husband is a huge fan.

As we pulled up to the venue there were people in orange vests outside the parking garage, turning everyone away. The movie theatre shares a parking garage with a stadium and whenever there’s a game it fills up.

As we pulled up to the first orange-vested guy he tried to wave us away but then my husband said the magic words that (almost) always work: “we need accessible parking.” The guy looked at the blue badge on our dash and let us through.

We parked easily and rode the elevator out of the garage, but inside the theatre we found the escalator broken. No problem, we’d take the elevator.

Also broken.

We asked the employee standing there if both were indeed broken. “Yeah, sorry,” was the extent of her answer.

I turned away and was prepared to do the stairs when my husband stopped me. “Hold on, there has to be a solution.”

He went back to the employee and asked “so if both the escalator and elevator are broken what is the plan for accessibility?”

She stumbled a bit over her words and then went to ask her manager.

The manager quickly returned, apologized for the state of things and led us to a back elevator for staff and deliveries. He led us all the way to our theatre and thanked us for our patience.

Crisis averted.

. . .

I wrote last time about advocating for accessibility and as much as I try to do better and be bolder, it’s exhausting and sometimes doesn’t feel worth it. In that moment in the theatre taking the stairs felt like it would require less energy than challenging the dismissive staff.

That’s where allies are essential.

The people who love me often step in and advocate for me when they see it’s hard. My husband is especially good at this and I am so grateful for him.

Allies make me feel seen, and valued, and worthy.

That’s love.

My favourite of our engagement photos.

Fourteen years later he’s still my biggest supporter and my stability. So grateful.

Monday’s are for memories – Pflaumen

Those tiny little blue plums. Shaped like an egg but smaller. Green inside. Not that great but plentiful when you have a tree in your backyard, which we did. Two actually.

I first knew the plums from my grandparents’ yard. And I think my aunt had a tree too. It seemed like a cultural requirement of being German. But we always called them Italian plums.

Or pflaumen.

…

Once when my brothers were young they decided to run away. Maybe it was just one of them, maybe both, I don’t remember. They packed a duffel bag with food for their journey and stashed it under their wardrobe until an opportune moment to sneak away. (One of the weird things about living in an old farmhouse was that there were no closets so we had dressers and wardrobes to hold our clothes.)

I don’t know whether they changed their mind or simply forgot to follow through but they never did run away and their bag of food stayed where it was. Until my mom came in the room about a week later and stared complaining about the smell. She searched the room and found the bag. She opened it to reveal that it was filled with food.

But only one type of food.

Plums. Piles of rotting plums.

…

Grandma made plum jam and the little bits of plum skin would roll up in tiny coils that we thought looked like slugs. Even when she filtered the skins out we still called it slug jam.

Oma made Plflaumenstreuselkuchen frequently when we visited. I preferred the taste of plain streuselkuchen, all butter and sugar and flour. But now that I bake it I understand how satisfying it is to start with firm, greenish, ugly plums and plain white dough and to end up with bright pink fruit bubbling through the crumble topping.

In English it’s Plum Crumb Cake.

Pflaumen.

Tools

At a community bbq last year one of the organizers thought I was so cool for using my walker to carry a family’s worth of hot dogs and she made me pose for the event photographer.

I remember a quote by Jesse Ventura going viral (before that was a thing) when I was a teen – “Organized religion is a […] crutch.

I heard a podcaster recently say “I used humour, not as a crutch but as a tool.”

Both quotes, although addressing very different subject matter, imply that a crutch is a negative thing –

as though using a crutch is an admission of weakness,

as though it’s something to wean yourself off of as soon as you’re able,

as though the crutch causes the weakness.

in 1999 when the Ventura quote was popular I didn’t know enough to recognize the ableism behind the metaphor. Now, 20 yeas later I see it plain as day when someone specifies “not at a crutch but as a tool.”

What is a crutch if not a tool?

It’s definitely not a failure, although it felt like it when I finally gave in and admitted that I needed mobility aids.

My internalised ableism told me that I was too young, too independent, too strong to need those.

I would only use a cane around the house. I would avoid going out if I couldn’t walk independently. I would limp and stagger rather than lean on a stick.

It didn’t take too long to realize the foolishness of that position and now I’m never without my cane.

But again I had to overcome the ableist voices in my head (and sometimes in the world around me) when I graduated to using a walker.

I would only use it on my worst days, as an absolute last resort.

But after feeling the effects of a day spent with my walker – legs supported, back not screaming in pain, arms not exhausted from carrying my bags, the satisfaction of getting things done and still having energy when I got home – I quickly learned to love it.

Now I take it whenever it’s more convenient than not. It just depends on the day and what I’m doing.

I am less disabled when I have the right mobility aids with me.

There’s no way I could enjoy places like the National Gallery without my walker. (Also IKEA, the mall, any museum and Home Depot.)

I don’t have many photos with my cane or walker because I’m usually taking photos at a closer range. On the rare occasion when someone snaps a picture of me from a distance my cane or walker usually make it into the shot.

And I am always glad because in those photos I look like me.

Fully.

Thrift Store Score

I want to start writing about things I love so that there’s more to this blog than whining about being sick. One of those things is thrift store shopping. It’s fun, cheap, socially responsible, and a great way to find unique items.

About a month ago I knew my husband’s work Christmas party was coming up and I needed something to wear. He offered to buy me a new dress but I declined, dug through my closet and found something suitable. I was all set.

Then one day I had ten minutes to kill before an appointment so I popped in to Value Village. I poked around in a few sections and was on my way out when I passed something that caught my eye. It was one of those convertible infinity dresses. I’ve been looking at them online for years because they’re intriguing – the bottom is a stretchy skirt and the top is two long strips of fabric. I’ve seen photos illustrating the seemingly endless ways that you can tie them to make unique looks.

I grabbed it, walked to the cash and bought it without even trying it on. It was $10.

And it was totally worth it.

I love thrift store shopping.

P.s Bonus – its Canadian made by a great company! When I googled, it sells for $170 online. 🤑