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.

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.

#gratitude

Over on Instagram there’s a #fiberuary challenge, where participants are supposed to post a photo each day corresponding to a particular hashtag.

Today’s is #gratitude and when I started preparing a post I realized my caption was better suited to a blog post so here I am.

A woman stands against a white wall, wearing a hand knit sweater. The top and sleeves are sheer and fuzzy, pale green and aqua. The body is stripes in shades of blue, green, yellow and pink.

Thanks to my husband for the use of his camera and patience to get this shot. Thanks to my mom for the necklace which matches perfectly and the tank top underneath. This entire outfit cost me $6 and that was for the yarn.

I’m grateful for this Kidsilk Haze that I found at a thrift store for $4.

I’m grateful that this sweater finally worked out. I knitted the sleeves back in June and then tried to squeak a body out of the remaining yarn but it wasn’t quite enough.

I’m grateful that I found this coordinating Jawoll sock yarn at the thrift store in December and that one skein was just the right amount.

I’m grateful for the tiny spools of matching mending thread inside the Jawoll ball because it was the perfect weight to hold doubled with the kidsilk.

A closeup of the sweater showing off the different yarns.

Closeup you can see where I held both yarns together at the bottom edge, and also to soften the transition from the top to the main body.

More deeply, I’m grateful that I have time to knit. I’m privileged enough to have free time, and to have a family who doesn’t mind when I choose knitting over household chores. A closeup of a hand stitching together a sweater while in the background the floor is covered in piles of unfolded laundry.

Part of the reason I can knit so much is because I only work part time due to my illness. I’m grateful that I have an employer who was/is able to accommodate my limitations so well.

I’m grateful that no matter how bad I feel, no matter how weak my muscles are, I can still usually knit. I’m grateful for the sense of accomplishment it affords me when I feel like I’m failing at most everything else.

And I’m very grateful that the pain I described in my last post lifted after a week. It felt like waking up, breaking through the barrier between nightmare and reality. I woke up Saturday morning and felt whole again.

So much gratitude wrapped up in one sweater.

A selfie of my in the sweater standing in front of a dark teal wall.

I’m grateful that my sweater matches my walls so well, making the perfect backdrop for a selfie.

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.

Resolutions and intentions

A notepad on a table reads (in a child’s handwriting) ELLA’S resolution: read more books, do more yoga

Same, girl. Same.

Everyone’s taking about resolutions and intentions for the new year and I don’t usually make any because it seems arbitrary but I guess it is a good excuse to reflect and tidy up your life so here goes.

First, a resolution – I want to read at least one (preferably nonfiction) book each month. Last year I only read about four so this is a big increase but I think it’s feasible.

Second, an intention – or maybe it’s more of a mindset shift. And to be honest I’ve already been working on it for a couple months but I’ll continue to work on this over 2020 until it takes hold.

I want to change the way I think about my body.

I often refer to it as a prison and that’s because it’s truly how it feels. I’m stuck in this thing that hurts me and limits me and controls large portions of my life.

I know that words have power though and if we change our words our thought patterns will follow so instead of a prison I will think of my body as an antique house.

There’s nothing you can do to improve a prison when you’re a prisoner inside. You’ve been defeated and you have no control. But an antique house is something you can take ownership of. You can restore the finishes, replace the broken parts, spend some money and time and effort and end up with a place that’s quirky but quite comfortable.

When I get frustrated by my pain or limitations I’ll think of this old house as needing some repair and instead of giving up and eating a bag of chips, I’ll drink some more water and do some stretches.

Instead of getting mad that I’m moving slow and then being cranky at the world, I’ll lay down and get some proper rest.

I’ll wrap myself in warm blankets. I’ll take my meds on time. I’ll investigate alternative therapies. I’ll eat healthy foods. I’ll shower more so I don’t feel gross.

I’ll do what I can to restore this old house. It’ll never be perfect but it’s mine and it will be good.

Myasthenia metaphors – A Listing Barn

My postural muscles have been overworked from sitting up or leaning forward and now they’re jello. They offer no support to my bones and my skeleton is hanging loose in the middle of my body.

An old barn in a country field. The roof is rusty and some boards are missing.

Not exactly the mental image I have but it was the best I could capture on a recent road trip.

Like a listing barn that you pass in the country. Boards missing, holes punched through where the wind whistles by, everything precariously balanced in mid-air ready to topple at the slightest jiggle. Like a tower of Jenga blocks right at the end of the game.

I move carefully and tenderly, keeping my bones stacked within my jello body. Cautious to not knock against anything, to not overextend my reach, to not turn too quickly in the night. Careful to not do anything that’ll knock over the barn, send the boards (or bones in this case) askew.

After a few days things firm up again. My muscles knit back together, spring back into action, my bones are held in place and I’m human again.