A grief journal part 3: Lasting Impact

This is the last in this series of three written a year ago for work.

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In my previous post I mentioned a man who recently died of COVID. I knew him almost 17 years ago when I was a brand new staff. I only worked at his home for one summer but I have thought of him often since then. In fact just this past Christmas I was tickling my young niece and was reminded of him. 

In the evenings, once the chores were done and the home was quiet, he would sit on the couch and make eye contact. It was an invitation to come and sit beside him. And when I did he would reach over, take my hand, and place it by his neck. It was a request to tickle him. As soon as I’d start to wiggle my fingers he’d clamp his chin down, pinning my hand there so I couldn’t move away and he would laugh, evidently delighted by the situation. 

Eventually he’d release my hand, his laughter would subside, he’d catch his breath. And then he’d do it all again. 

It seems a small memory of an insignificant routine but it was one of the ways he taught me new methods of communication. 

I was new to the field of developmental services and he was one of the first people I supported who did not use words to communicate, but clearly had much to say. 

He taught me how to listen when there are no words. I learned to read eye contact and body language. He showed me to recognize hand over hand movements as expressive language. He was patient as I learned to differentiate his “yes” head movements from his “no.” 

As he taught me his language I learned more about him; what form of his name he preferred me to call him by, what foods he hated, and what activities he enjoyed. 

I credit him with teaching me how to listen to communication without words. Communicating in non-traditional ways is a skill I’ve needed to keep practising since. 

So when I heard he had passed away I remembered all of this. I felt sorrow for his housemates and staff who will feel a great loss in the home. But I also felt grateful. I am grateful for the short time I spent working in his home and for the impact he has had on me. 

Like I said in my previous post, each “departure leaves a hole in the community that is felt much farther than one might expect.”

A grief journal part 2: Community

Well I went to another funeral this week so it’s good timing to share the second in this series I wrote last year for work.

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I wrote the draft for my previous post just before Christmas. Since then 2 more people in our community at work have died. That makes 5 in the past few months.

Later on the same day I published that post on The Disability and Faith Forum I learned of another death. A man that I used to support just died of COVID this past week. I worked with him 16 years ago, in a small town far from where I live and work now, but I remember him clearly.

At a church gathering on Sunday (outside, masked, distanced, etc.) our pastor asked how things are going at work and without thinking I automatically answered “everyone is sick, dying, or dead.” I then clarified “… well at least that’s how it feels.” 

That is how it feels. 

Many of the people who have passed away in our community are not ones I knew well. I would see them in passing at Christmas parties and barbecues and maybe if I visited their home for a meeting with their staff. So the losses aren’t personal for me in the way you might think. 

But each of the people we have lost are personal to someone that I do know well; the staff who have worked with that person for years and know their life intimately, or the manager who has been tirelessly advocating for their health care needs as they’ve aged, or most often lately, their room mates and friends whom I meet with on Zoom every couple weeks. 

Every other Tuesday I gather with a group of self-advocates – people with developmental disabilities who get together to work on ways to make things better, both in our agency and in the broader society. They are doing awesome things and I’ve been so happy to get to work with them. 

The group has written to the government asking for wage enhancements to attract staff to this field. They’ve chosen a representative to meet with management. At those meetings with managers they have successfully advocated for changes to the way things are done. They tell stories of times they’ve advocated for themselves and they encourage each other through tough situations. Members offer advice, prayer, and connection in a time of such severe isolation. 

And lately they’ve taken on a new role: supporting each other through the grief of losing friends and housemates. They speak of the hope of heaven and look forward to when we can all see each other again. They carefully choose their words and dictate messages of condolence for me to write in cards that we mail to the home of each person who dies. 

The cards carry memories, “… we remember she liked trains… played with blocks…she had a nice smile…he was a good friend…a nice person…” 

And always the cards are addressed to “everyone who lives and works in the home.” 

Because everyone experiences the loss. Everyone grieves. Whether you lived with the person, worked with the person, or knew them in passing, their departure leaves a hole in the community that is felt much farther than one might expect. 

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.

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.

June = Myasthenia Gravis Awareness

June is Myasthenia Gravis awareness month.

Every June for the past 5 years, I’ve thought about writing something but always come up short, because what is worth saying?

Having Myasthenia Gravis means sometimes I use a cane,

Should I share my diagnosis story? Should I try to detail all the ways Myasthenia Gravis has shifted the direction of my life? Should I list the symptoms so people might be better able to recognize it in themselves or others?

sometimes I use a walker,

My diagnosis was swift and too long ago to matter. My life has shifted considerably but that is relevant to no one but me. Symptoms you can google and find an exhaustive list.

sometimes I wear sunglasses indoors, and sometimes I add an eyepatch,

Those things are not worth sharing today. The awareness I hope people gain is that not all disabilities are visible. Not every illness has a cure. Pain sometimes just persists. That’s the way it is.

sometimes I get infusions in the hospital,

Recognize that there are people you pass every day in your regular routines who are carrying heavy burdens that go unseen.

sometimes I do my infusions myself as I run errands,

Don’t judge the person using an accessible parking space who looks “fine.” They may be able to make it into the store but are unsure if they’ll be able to make it back, and know that saving those few extra steps might make the difference.

Don’t begrudge that woman you see take the elevator even though it’s only one floor. Maybe she can walk fine on flat ground but not up stairs.

Don’t assume that man is using the accessible stall in the bathroom because he just wants more space. He may not be able to get up off a toilet without using grab bars even though he looks no different than you.

Don’t accuse that young person of faking it, or carrying a cane just for attention. They may never know when their legs might fail and drop them to the ground.

Don’t give the stink-eye to that teenager sitting in the priority seating area on public transit. He might be barely able to sit upright today, let alone stand.

Don’t assume that lady in the checkout line is a bitch because she seems unfriendly and impatient. She might be in excruciating pain and is just trying to survive the day.

sometimes my face feels droopy and lopsided,

Realize that not every experience is like yours. And that’s okay.

Be patient.

Give the benefit of the doubt.

Listen when people tell you their stories, even though you may have never experienced what they’re describing.

Bodies, like people, are diverse and we need to make space for each other as we move through the world.

Because we are better together.

and sometimes I’m perfectly fine and strong and happy. Every day is a surprise.

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.