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.

Odds and ends

This year, for my mom’s birthday I promised her 6 pairs of socks. One pair every 2 months.

I was ahead of schedule for the first half of the year but now…not so much.

I’m still working on the September/October socks and there are only a few days left in the month.

It’s not because I procrastinated – I had the yarn picked out in the summer. But then I misplaced it.

I grabbed different yarn and started a pair but after making one, decided they were not her colours so I finished them for someone else.

I started a second pair and when I got halfway through the first, I decided she wouldn’t like that yarn either. And besides, they were turning out too big.

After three failed attempts I finally just grabbed some odds and ends of leftovers and cast on from the toe up. I decided I’d knit until I ran out of yarn so that’s what I did and now they’re gonna be ankle socks.

I feel like these socks are a metaphor for life right now. Grand plans and lofty goals have fallen to make way for the odds and ends of getting by.

Since school started again, and our schedule includes some working from home, some working from work, and no safe (enough) option for using public transit, my time is chopped up into bits and pieces.

I fold laundry while on a phone call for work. I manage the work social media in my off hours. I stuff a turkey while attending a virtual conference. I carve out time in my evenings to finish the work I couldn’t cram into the day. I squeeze a shower into a 15 minute break between video meetings.

Odds and ends.

But it all works out. It all gets done.

And finally there’s something useful and maybe beautiful, even if it’s not the image you had in your head at the start.

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.)