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.

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.)

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.

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

Penny’s Mandalas

I’ve written before about the knitting I inherited from a woman named Penny. (Post 1, Post 2, and Post 3.) She was a friend of a friend of my parents and she passed away suddenly with many unfinished projects on the go.

When this pandemic hit a few weeks ago and we went into isolation mode I went to the basement and dug through my bins of “Penny knitting” and pulled out this mostly-finished mandala sweater.

All the pieces laid out on the floor.

It was a kit made by Philosopher’s Wool complete with wool, pattern, buttons, and a tag to sew inside when complete. Apparently it was a gift from her kids.

Penny had completed 8 and a half squares so I only had one and a half left. I tried to analyze the completed squares to find a rhyme and reason to the colour changes but it seemed to be random so I continued, randomly.

Once I sewed them all together I realized I needed to cut steeks to create a round neckline. The instructions said to machine stitch two lines but since I don’t have a sewing machine I backstitched with wool and then did a crochet chain to secure it. I left the cutting until the end (because it freaks me out to cut knitting.)

Steeks reinforced, neckline done, preparing to cut.

I picked up stitches for the waist, neck, wrists and button bands. …and then I realized I forgot to size down my needles so I added a couple crochet chains on the inside of the neckline and button band to cinch them in a bit tighter so they’ll lay flatter.

And then I finally cut the steek, and stitched down the inner facing.

In the end, I think it all looks pretty good. I never would have chosen this sweater on my own but it was a fun challenge to figure it out.

This is the card that came with the kit. There’s a happy birthday message written on the reverse.

And it was nice to have a project the keep my mind and hands busy during this weird time of busy inactivity.

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.

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.

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.

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.

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

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.

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.

Access, Advocacy & Allies (Part 2)

Fifteen years ago I began a career supporting people with intellectual, and other, disabilities. As a brand new staff I took several training sessions about how to support people in a person centred (rather than staff centred, or system centred) way.

I learned that part of supporting people in a way that centred on their voice, their dreams, and their goals was advocating for them and with them in the community.

I accompanied people to the doctor and helped advocate for medication changes.

At the bank we advocated for better access to finances.

I filled out forms and sent letters to government officials (usually about money or taxes).

I fielded awkward conversations in public with people who weren’t sure whether the person I was supporting should really be there, out in the community, living their life alongside everyone else.

– – –

The world is not built for people with disabilities and especially not for those with multiple disabilities. I got very familiar with needing to speak up and ask for something to be done differently so that it would work for the person I was serving.

But advocating for someone else is very different from advocating for yourself.

I remember the first time I realized this. It was about 12 years ago and I had just arrived at a restaurant and realized my blood sugar was low but that I had run out of jellybeans in my purse. I ordered an apple juice from the waitress, knowing that would fix my sugar.

Then I sat, waiting, and watched the waitress chatting away to a coworker at the bar. Chat, chat, chat.

I’m sure she was trying to time it so that she’d bring our drinks once we were ready to order but I needed the juice sooner than that.

As I sat there becoming increasingly low and increasingly frustrated, I realized that if I was there as a staff, supporting someone with diabetes who needed that juice, I wouldn’t hesitate to go and ask for it. So why wouldn’t I advocate for myself in the same way?

I did ask for the juice and I got it and it fixed my sugar and I felt like it was a big moment of realization for me.

– – –

I am so grateful for my experience supporting people with disabilities for how it prepared me to now live as a disabled person. I have learned so much from the people I have supported over the years. Advocacy has not been the only area of growth for me but it has been invaluable.

It’s still a struggle though to advocate for myself so I push myself to use my current situation to advocate for others, because somehow that’s easier.

I know that things that work for me may still be an issue for others and so I try to use that awareness to speak up.

Whenever I have to lift my walker over an edge that means a wheelchair would be stuck.

When an automatic door is locked, I can push it open but that again means some people would be left outside.

When the elevator is broken I can trudge up the stairs but not everyone has that privilege.

So those are the times I speak up.

I may not want to advocate for myself but I’m glad to be an ally for others.

More on allies next time.

I was invited to share a story at a recent conference at work. I didn’t have to advocate for accessibility because they had a ramp out so I could easily get to the stage without lifting my walker wheels. Allies.