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.

A hand is in the foreground placing plum halves in a cake pan filled with white dough.

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 out clothes.)

I don’t know whether they changed their mind or simply forgot to follow through but they never did run away and they’re 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.

Crumb topping being spread over plums on a cake by hand. A red bowl is in the background.

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.

Baked plum crumb cake.

In English it’s Plum Crumb Cake.

Pflaumen.

Tools

Woman pulling a walker on wheels loaded up with hot dogs and bags of chips at an outdoor event.

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.

Full length selfie in a mirror in a hotel lobby. A woman stands with a cane.

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.

A candid photo from behind of a woman walking with a cane. There are children walking in front of her. Outside in the sunshine.

It didn’t take too long to realize the stupidity 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.

A full length photo of a woman from behind as she pushes a walker down a large hallway. Photo was taken in the main atrium of the national Art Gallery of Canada.

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.

All coming together.

I remember being a teenager and feeling a profound loneliness. It was only for a short time, but it’s always been a strong memory so a few years ago when I saw a teen girl I knew from church post on facebook that she needed a friend, I messaged her and offered to get together for coffee.

We went out for fries instead and from there she started coming to my house every Monday evening to knit and chat with a group of my friends. Craft night.

Over the years we saw her grow up, excel in high school, graduate, get a dog, and eventually move to the other side of the country. (She still Skyped in sometimes on Mondays from her dorm room.)

Now all grown up, she is married and about to become a mother. When I shared that news with the Monday night ladies they immediately asked when I wanted squares.

For every baby born from craft night we knit squares and join them into a quilt-style blanket. My friend Becky first arranged one for me when I was pregnant and we have continued the tradition.

So the squares for this newest young mom have been coming in over the summer and I’ve been piecing them together.

At the beginning it’s always hard to see how they might fit into a cohesive design. Once I start picking up stitches and knitting bridges it gets real wonky and there’s always a moment mid-project that I’m afraid I’ve lost the plot and it’ll be a disaster. But in the end it always comes together.

I’m reaching that end stage now where the final product I see in my mind isn’t far off from what I have on my needles. I’m excited to finish it up and ship it.

It’s a good metaphor for life in general, and it’s particularly fitting for the stage of life I’m in right now. My house is torn apart because I’m slowly packing everything to move. My other house is torn apart as we prepare it to move into. The disparate pieces are starting to come together.

It always comes together in the end.

Brightly coloured Knitted squares lay on the floor beside a Rubbermaid bin.

The blanket in process, and bins of packing in progress.

Mothering/Momming

I find summers difficult because on top of the heat and busyness there’s a pressure to make every moment count. It feels like I’m supposed to do all the things – go to the beach, splash pad, park, cottage. Have picnics, play dates, quality time.

And I want to do it all. I want to be that mum – the one who rocks at summer. I had one of those moms. We did all the things and I never realized how much energy it takes to be on the parental side of that.

Mother and daughter wearing matching dark blue dresses.

Matching dresses.

This summer though instead of feeling frustrated, I’m feeling grateful. Grateful that I’m able to keep up better this year and actually do many of the things, but really grateful to the other moms who step in and carry some of the summer load.

Close up of two arms, an adult’s arm with a real tattoo of green and yellow flowers, and a child’s arm with a temporary glitter tattoo of green and yellow flowers.

Matching tattoos.

Because our family lives far from us so we’ve had the need, and opportunity, to cultivate some really strong friendships here in our city.

I have one friend in particular that I refer to as my “life wife” because we partner daily and live life together.

Through her family I’ve inherited an entire neighbourhood of friends. We have backyard barbecues and pizza parties and impromptu afternoon chats in the front yard. The kids run wild from house to house, zigzagging across the street, splashing in pools, skipping, riding bikes and generally being very loud.

A girl on a scooter and boy on a bike ride down a residential street past houses.

My daughter spends her days there while I’m at work and we were chatting one day about the differences she sees in that household versus our own. We established that I’m more of an inside mum while my friend encourages lots of outdoor play. My daughter explained “that’s just how her momming is.”

True. And I’m so appreciative of her “momming.” And of all the other parents who contribute to my daughter’s childhood.

A young girl crouches in the forest while a chipmunk eats out of her hand.

I’m often sent photos of the adventures they’re having while I’m at work and it fills my heart with joy to see my girl out in the wild, feeding chipmunks, and exploring defunct railroad tracks.

A girl wearing a T-shirt with sharks on it balances on a railroad track. Other children in the background also walk along the track.

My friends take her apple picking, cherry picking, and strawberry picking. With them she practices searching for caterpillar eggs, bike riding, and fort building.

A 7 year old girl smiles at the camera and holds up a leaf with a tiny white caterpillar egg on it.

As a disabled mum I am so grateful that there are people more able-bodied than me who can offer the experiences that I struggle with.

A row of children are walking through a field of long grass. The photo was taken from behind them so we see their backs as they walk single file.

Off to find a cherry tree.

Not only do they include my daughter in their adventures but they support me to join in as well.

A 7 year old girl smiles at the camera while crouching in a strawberry field, holding a basket of strawberries she has picked.

When I wanted to go camping last summer they made it work. When I wanted to go to the beach they physically helped me walk back to shore when my legs gave out in the water. When I wanted to go for a forest walk they chose a steady path and pace, then sent the kids into the woods to play for a bit while I rested before starting the trip back home.

A 6 year old girl sits in a hammock and makes a silly face at the camera.

I’m feeling especially grateful today because I’m realizing all that I have lost.

My “life wife” and her family left this morning to move 10 hours away. It’s not permanent, and we’ll see them in a few months, but it leaves a big hole in my life. I’m grieving that loss.

But.

While I grieve I can also celebrate – celebrate the friends who are still here, celebrate the adventure and opportunities for my friends who are moving, celebrate the fact that I have such a nurturing community to be part of.

Anyone, disabled or not, would be lucky to have people who love like this.

Three women, close together, smile at the camera. It’s sunny outside and there are trees in the background.

July

It’s been a month.

It. has. been. a. month.

Theres been so much going on in my days and in my head that I didn’t even know where to start.

We bought a house. We sold our house. We went to swimming lessons and summer camp and had backyard bbqs and went to the movies and shopped for paint colours. One of my lifelong besties was diagnosed with cancer and had major surgery. Other friends-turned-family are moving out of the country. Tonight I had 13 kids here for an 8th birthday party. We leave for vacation tomorrow morning.

It would have felt trite to write about the busyness of our daily activities. But the stories weighing most heavily on my heart didn’t feel like mine to tell. My own frustrations have felt small in comparison and not worth dwelling on.

So I’ve written nothing.

But July is winding down and so is some of the crazy.

My friend’s cancer is a less worse type and surgery went well and if things continue the way they’ve been going, she should be okay. If I believed in reincarnation (which I kind of wish I did) I’d say that in another life she was my daughter. Don’t know why, I just feel it to be true. (Well trueish.) I read somewhere that having children is like watching your heart move about the world, outside of your body, and that is a little what it feels like when she’s so far away and hurting. But I’ll get to see her next week which I’m really looking forward to.

And then more locally, my life is in a bit of upheaval because of my friends who are moving away. They’re a daily part of our routine – rides and meals and babysitting (more like coparenting) and in two weeks they’ll be gone to the states. It’s not permanent but it’s enough that I need to rework my life. I feel lost. We’ve been living life together for so many years I have a hard time picturing it without them.

But we’re moving too and that’s a great change. We’ve been trying to buy a house all year and it’s been such a frantic and aggressive market that it took 7 months and 7 offers on different houses before we got one.

I have a hard time with stairs and we’ve known vaguely for a few years that we should move somewhere that’s all one level but finally this year we decided to actually go for it.

Our new house is a bungalow so it’s a lot better for my mobility challenges. It has a garage which means we won’t have to scrape ice off the car in the winter (hallelujah!) It’s in the right school district to keep our daughter with all her friends. It’s on good transit routes and it’s close enough to where we are now that I can still walk to my chiropractor, pharmacy and local library.

A fresh start will be good and challenging and fun.

I’m looking forward to the next month.

Photos from our new backyard. We don’t take possession for a few weeks but we’ve been able to visit a few times already. I’m going to have a yard! With trees!

Myasthenia metaphors – Flu Fatigue

You know how when you’ve been sick with a bad cold, or a stomach bug or the “flu” there’s a time where you think you’re getting better until you actually try to do something?

You’re bingeing Netflix and feeling fine and thinking that you’ll be ready to go back to work tomorrow and then you decide to get up and make yourself a tea. You walk to the kitchen and fill the kettle and get a head rush and a body slamming fatigue so you sit down while it boils.

The kettle clicks off, you’re feeling good, you get up to get a mug, a tea bag, pour the water, and wait. And you’re exhausted from the effort.

You shuffle back to the couch, settle in with your tea, blanket and Netflix and wonder how many more days it’ll take before you feel human.

This flu-like fatigue is sometimes the only symptom I have from my Myasthenia Gravis. No overwhelming weakness, my vision is fine, no body pain, just inexplicable exhaustion.

The kind of exhaustion that can’t be fixed. I slept until 11 am, stayed in bed until 1pm, moved to the couch and watched tv until 330pm, Uber’d to get my daughter from school and spent the evening alternating between doing a thing (like cutting up her food) and lying on the floor. Counting down the hours before it’s appropriate to crawl back into bed.

Thankfully it usually lasts only a day or two so I’m looking forward to a better tomorrow.

The upside of downtime is that I usually get a lot of knitting done. Also I should note that I wrote this post a while ago during a bad time. I’ve actually been great lately.

Comparison

Last week I spent my work day at a barbecue on the beach. Each year we organize this event for our community to all come together: our employees, the people we serve, friends, and family members. Almost 200 of us came together and it was wonderful.

The organization I work for supports people with developmental disabilities to work, learn, and live their lives. I’ve been working with this organization for almost 15 years so although I’ve been long acquainted with disability, our relationship has only recently become more intimate.

My interactions at the barbecue were typical of any social gathering. People question why I have a cane or a walker. I answer that my muscles aren’t very strong so I need help to walk.

Most of those who asked me had their own disability diagnoses so I was always curious how they would respond. Many indicated that they felt sorry for me.

This surprised me because I still feel like my challenges pale in comparison with theirs. Obviously they felt the same but from their own perspective. The challenges we’re familiar with are still the most comfortable.

Whenever I find myself immersed in a room filled with disabled bodies. I see the way each person moves, communicates, and functions with the world around them and I recognize my privilege. When I am able to transcend physical barriers that would stymie others, I find myself so grateful for the amount of ability I have.

Comparison is said to be the thief of joy but sometimes it can open a window of perspective. A perspective of gratitude.