A grief journal part 1: In Memory

This is a series of three posts I wrote one year ago for The Disability And Faith Forum. This is Part 1: In Memory. Stay tuned for Part 2: Community and Part 3: Lasting Impact. I am sharing these posts here, now, because once again several people I know have died in the past few months and these thoughts are still relevant.

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I hesitated to write this because I don’t have the eloquence of Mike Bonikowski and I want to do this topic justice, but I have feelings and thoughts I want to share so I will try. I wrote a first draft over a month ago and since then several more people in our community have passed away and so my mind returns again and again to the way we handle those losses.

Over my years in developmental services, I have gotten to know, and have cared for, many people who have died. We work with people who are medically fragile, who have complex needs, who may have shortened life expectancies, or who may not be able to get the support that they need. Long story short, we support many people who die.

Every time someone dies we grieve.  We mourn. We miss them.  And then we move on.

Because there’s someone else who needs that space, who needs that funding, who needs that support, who needs our focus.

I frequently think of those we have lost and yet I hesitate to say anything to my colleagues because it feels as though we’ve collectively moved on.  We need to be focussing on what’s coming up next.  I hesitate to spark feelings of grief in others because I don’t want to bring people down as they’re just trying to get through their workday.

Recently though, I received a text from a colleague and friend of mine that made me rethink this. His text was short and brief.  It simply said “I miss John. I think of him frequently in the winter.”

As I read the text my eyes filled with tears and I felt deep grief because I also miss John and I also think of him often in the winter.

John is someone that we supported at Christian Horizons who died tragically in the wintertime a few years ago.  He left behind a huge hole in his community, both within Christian Horizons and beyond.

I think of him frequently but I don’t speak of it much because we are all busy with the business of supporting other people. I don’t want to be the one who brings the mood down. 

But receiving that text didn’t bring my mood down.  It was actually a gift. Reading that text gave me a sense of shared grief.  It brought a sense of solidarity in the sadness of missing someone.

I think that’s something we could do better in our field. 

Of course we do the ritualistic mourning.  We may hold a funeral or memorial service.  There will be a video at the end of the year with the names and the birth and death years of all the people who passed away. We might honour them in our newsletter shortly after their passing.  However we don’t hold them in our collective consciousness and continually grieve together.

When our family members or friends pass away we continue to hold that space when we gather. We remember where they would be if they were here. Their absence is a presence in the room, and so they’re not really gone. There is a noticeable void.

In developmental services the absence becomes filled with a new person’s presence almost immediately.  This is necessary and good because it means someone else is getting the services they need.  A new person is being supported and included, which is our goal and mandate. 

It doesn’t negate the fact though that someone was lost and that someone is worth remembering. 

Going forward I will try to remember that a simple text or statement expressing that feeling of missing someone need not bring a weight upon the group.  On the contrary, it can be a buoy that lifts our hearts together. If grief is an expression of love then may we find ways to grieve, and love, together. 

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Open Future Learning produced this song based on Mike Bonikowsky’s poem that expresses similar feelings to what I’ve tried to describe. Please take a moment and listen. 

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.

Myasthenia Metaphors – flamingo knees

If you ever see me wearing black knees braces and walking with a waddle it’s probably because I have flamingo knees.

Most of the time my knees are fine, but every once in a while all the muscles turn to jelly and my knee caps feel like they’re unsupported. They slowly drift further and further back as my knees begin to hyperextend.

The first time it happened was two months after I noticed my disease was generalizing – not only affecting my eyes. I didn’t use any mobility aids yet. My husband and I had taken a day off work to go Christmas shopping at the big mall downtown. We had split up for an hour and as I walked the pain became sharper and sharper, just in one knee.

I entered the drug store on the main level and went straight to the “old people aisle.” The one that housed braces, canes, extendable shower brushes, and all the things they advertise using grey-haired models.

I sat on the floor and tried on several braces until I found one that worked. I stood up and immediately felt better. I paid for the empty box and wore the brace right out of the store as I went to meet my husband.

For me, flamingo knees are triggered by walking on flat, uniform surfaces for an extended period of time. I can walk outside for an hour with just my cane and be fine. The unevenness of the ground provides enough variation in my gait that no one muscle is exhausted.

But places like the mall, IKEA, Home Depot, and Costco are a problem. Every step feels the same, uses the same stepping pattern, and stresses the exact same muscles. They start to wear out pretty quickly.

So now I know that even on a good day I will need my walker. (On a bad day I might use a motorized cart.) Which is fine with me because it’s got a basket and a seat which means I’m way more comfortable that everyone else standing in the checkout line line with their arms full.

Walking in the snow is not as tiring as you might think because every step feels different. Variety is good for me.

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.

The Gift of Blood

We dragged a patchwork blanket onto the front lawn and had a “read under a tree” date. Ever since she was little my daughter has loved to read under trees, and since being inside is getting a little old after two months of quarantine, this was a perfect afternoon activity.

We read a chapter of Peter Pan out loud (so good! If you have never read it you are seriously missing out) and then settled in to our own individual books for a bit of quiet. She opened a favourite comic book and I returned to Fearfully and Wonderfully: the Marvel of Bearing God’s Image. Every chapter gives me so much to think about, it’s taking a while.

This day the chapter was about blood.

Blood is something I am well acquainted with as a diabetic. Until a few months ago (when I got new technology) I would prick my fingers up to 10 times a day to test the glucose in my blood. The sight and taste of my own blood is familiar and reassuring. It’s part of me and interacting with it is no different than washing my face or brushing my hair.

Diabetics everywhere rejoiced when a recent emoji update included a syringe and a bright red blood drop. Finally one of the biggest parts of our daily routine was represented in this new language on our phones.

When my sugar is high my blood feels thick and poisonous. I ache all over. My movements are slow and exhausting. I know from reading about diabetes that when my sugar is high my blood can become acidic. I know from experience that if it gets high enough it makes my kidneys hurt.

All of this makes me appreciate the blood that flows through me, keeps me alive, and warns me when things are wrong.

When I underwent plasmapharesis to stabilize my Myasthenia Gravis before surgery I saw my blood in a new way. With tubes in each elbow I watched dark red blood come out one elbow, enter a large loud machine, and return to my body through the other elbow. Large glass bottles, filled with plasma the colour of champagne, hung at the end of my bed and were quickly drained as they were added to the mixture going back into me. When I got up after three hours I’d see the bag of my old plasma hanging above the head of the hospital bed. Cloudy, like homemade apple juice with particles still in.

I hated that process more than anything in my life and it made me appreciate my kidneys and the way my body cares for my blood on a daily basis.

As I lay reading in the sun on the lawn I came to the middle of the chapter where Dr. Brand starts to write about transfusions.

He explained how transfusions work. He explained how vaccinations and inoculations work. That they take the “blood of an overcomer” and introduce it to a sick body to lend it the strength it needs to fight infection.

As I lay in the sun I was very aware of my infusion kit lying beside me, of the needles taped to my bare skin where my shirt had risen up, of the antibodies pumping slowly into me. Other people’s blood, processed and refined, mixing with mine. Lending me the strength to live.

I am so grateful for those who willingly give their blood for people like me. They don’t know the stories of everyone who may benefit from their gift but they recognize the powerful potential of their blood, not just for themselves but for others. And they give freely.

Amazing.

Oh the places you’ll (not) go – (Monday’s are for Memories)

Every day of this isolation it seems I remember another place I’ve been. Some are familiar, routine locations that I’ll go back to when this is over while others are from my distant past; places I’ll never return.

Right now they all feel the same – distant and unreachable. I started making a list:

• McDonald’s
• EB games in the mall near my house.
• The little pet store beside Blockbuster in Gatineau that we visited a couple times over a decade ago while renting movies with friends.
• My grandma’s condo.
• A roadside cowboy themed souvenir and western wear shop along the trans Canada highway where I bought a rabbit skin when I was 17.
• McDonald’s.
• My friends’ house where we like to cook together and wrestle with the kids.
• The Baskin Robbins where I always order peanut butter chocolate ice cream.
• My local yarn store that sells hand dyed wool and Soak woolwash which I am running low on.
• The London Children’s museum that I went to as a child with my family and on field trips, and then brought my own daughter to many years later.
• McDonald’s.
• My office with its comfy ergonomic chair and people to talk to.
• A Christmas store in Frankenmuth that had the most diverse selection of ornaments I had ever seen and the hotel we stayed at nearby when Eleanor was a little, just-barely-walking, baby.
• Camping with my parents in our tent trailer on Lake Erie when I was a kid.
• The library on our way home from school/work where we visit with our favourite librarians.
• Straßburg, France where I saw a double decker carousel that included a giraffe in its selection of animals, and we went to an Italian restaurant that put shrimp and curry on their Hawaiian pizza.
• McDonald’s

The only location safe right now – I’ve got my knitting and my home and my family, which is really all I need.

… I think I’ll make burgers for dinner.

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.

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.