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. 

Casual Ableism in two acts

An alternate version of this post originally appeared on The Disability and Faith Forum.

Act 1: buying boots

The single boot on the clearance rack fit my daughter perfectly. These boots were perfect: they will work as part of her Halloween costume, they will work as rain boots, and they were deeply discounted. So I walked over to the sales person and asked if she could get the mate from the storage room. She took the boot I held out and promised to be back.

My husband and daughter found a couch nearby while waiting, but I stayed exactly where I was so the salesperson could find me. I sat down on my walker and waited.

Eventually she came back with both boots and was walking toward me. She was obviously looking for me standing there; she was gazing all around. It was as though I had disappeared. I tried to catch her eye but she was looking right over my head.

As she walked directly at me, about 10 feet away, I called out “I’m here.”

She heard my voice and looked around again, a confused look on her face. She didn’t see me but continued to walk in my direction. When she was about 8 feet away I said “right in front of you.” She still didn’t see me and looked even more confused but continued forward.

As she reached about 6 feet away I started to stand up. She was visibly startled as I rose into her gaze. She finally saw me.

I took the boots and paid.

Act 2: popping balloons

We were at a fall fair and there was a small crowd waiting at the balloon dart game. I gave my daughter a five dollar bill and urged her to wait her turn in line.

The time came, she stepped up, and paid the carnival worker for three darts. One, two, three throws, and unfortunately three misses. We had seen this exact scenario several times already and knew that she would be given extra darts, one at a time, continuously, until she popped a balloon. This was a “prize every time” game.

Instead the worker called to me, sitting behind her. He offered me some darts as a “special customer” and I declined, explaining “this is her thing. She can do it.” He persisted though, stating “but I really want you to have a chance” and no matter what I said he would not give up.

I relented, threw a dart, popped a balloon, and handed the remaining two back to my daughter.

We walked away with a much larger prize than we had seen anyone else win at that booth.

This year at the fair, my daughter won a big prize all on her own, without any help. Perfect.

Conclusion: how we perceive each other

These two stories may seem quite different – in the first I was overlooked and in the second I was singled out – but the experience of both was similar. Sitting on my walker meant that I was perceived differently than the people around me. I didn’t register to the saleswoman as a person, and to the carnival worker I was an object of charity.  Neither had any ill intent but I definitely felt othered. 

That’s what ableism does.  Like other forms of discrimination, it divides based on difference and clearly communicates that there is a preferred way of being.

I have walked (or rolled) on both sides of that divide; first as a nondisabled professional supporting people with disabilities, and now as a disabled person who still works in the disability field. I am grateful for experiences like this because, though they are mild, they make me stop and think about the ways I perceive others.

When my body won’t hold me anymore – music and mortality

This post originally appeared on the Disability and Faith Forum.

When my body won’t hold me anymore
And it finally lets me free
Will I be ready?

When I hear the Avett Brothers sing these lyrics I feel it deep in my being, on multiple levels.  I long for the day my body lets me free. I love who I am now, but I still feel the fullness of who I was before my illness, constrained inside this disabled body. When the time comes will I be ready to let it all go? To move on to what’s next? 

When my feet won’t walk another mile

And my lips give their last kiss goodbye

Will my hands be steady when I lay down my fears, my hopes, and my doubts?

The rings on my fingers, and the keys to my house

With no hard feelings

I remember setting aside my rings, keys, phone, and all my personal effects as I went into the hospital for surgery.  The plan was for my thymectomy to be done through a small incision at the base of my throat.  However, I had also been marked in blue Sharpie with a long line down the centre of my chest, just in case they needed a larger opening. I wouldn’t know until I woke up whether my ribs had been cracked.  I laid in my stretcher outside the operating room listening to the metallic clink of the doctors preparing their tools and I gave my fears, hopes, and doubts over to God.  

I had made a CD for my young daughter with all the bedtime songs I sang to her each night.  Recorded on my phone, it wasn’t the best quality, but I hoped it would help if I didn’t come home. 

I had asked a friend to check in on my husband at the time when I would either be coming out of surgery, or the bad news would be delivered.  I didn’t want my husband to be alone if things went poorly.

I had connected with family and friends.  Made sure people knew I loved them.  The odds were good I would see everyone again but my health had been declining steadily for two years and I didn’t trust my body anymore. 

The year after my surgery a friend helped me record more songs as a gift for my dad. Music has always brought me solace.

When the sun hangs low in the west
And the light in my chest won’t be kept held at bay any longer
When the jealousy fades away
And it’s ash and dust for cash and lust
And it’s just hallelujah
And love in thought, love in the words
Love in the songs they sing in the church
And no hard feelings

Thanks to modern medicine my illness only has a mortality rate of 3 or 4 % so it’s unlikely that it will kill me. I have heard it described as “frequently life threatening but rarely fatal” but living a medically dependent life keeps me in a frame of mind where I am continually asking “will I be ready?”  

It may be morbid to have a file on my phone filled with funeral plans and to have already asked a pastor friend to do the service should I die unexpectedly, but being ready has uplifting aspects to it.

Lord knows, they haven’t done much good for anyone
Kept me afraid and cold
With so much to have and hold

I tell people I love them, frequently and sincerely. I try to keep the peace with others as much as I can.  I don’t want to hold grudges. I don’t want anyone to doubt my affection for them. I try to be myself and I try to love myself. I don’t always get it right, but I want to go to bed at night without regrets.  With no hard feelings. 

When my body won’t hold me anymore
And it finally lets me free
Where will I go?
Will the trade winds take me south through Georgia grain?
Or tropical rain?
Or snow from the heavens?
Will I join with the ocean blue?
Or run into a savior true?
And shake hands laughing
And walk through the night, straight to the light
Holding the love I’ve known in my life
And no hard feelings

We try to predict what comes after this life, and through faith we feel we know. No matter how sure we are, though, there’s still some mystery. “Holding the love I’ve known in my life” feels like a reasonable and reassuring expectation. In The Universal Christ, Father Richard Rohr observes that if God is love, and love is a verb, then maybe God is a verb. The idea that God is present in every loving interaction I experience has made Him feel closer and more integrated in my daily life. I will gladly hold on to that. 

Lord knows, they haven’t done much good for anyone
Kept me afraid and cold
With so much to have and hold
Under the curving sky
I’m finally learning why
It matters for me and you
To say it and mean it too
For life and its loveliness
And all of its ugliness
Good as it’s been to me
I have no enemies

On days when every breath is painful, or when I’m angry over petty things, or when all my treatments feel overwhelming, I can listen to this song as many times as necessary. It moves my heart to a place where I can recognize that whatever loveliness and ugliness I’ve experienced in this life, I truly have no enemies (not even my own body). I can rest in the knowledge that I am as ready as I can be for whatever comes next. 

Is it really a compliment?

I ran into someone I hadn’t seen in months and as part of the usual catching-up chit chat they asked if I had lost weight. When I replied that I didn’t know they said it looked like I had.

It was clear they meant it as a compliment.

All the way home I was hoping they were wrong

Because I don’t have a scale, I pulled out some jeans from high school and tried them on. They shouldn’t fit me now, and thankfully they didn’t. I breathed a sigh of relief, put the jeans away and went on with my day.

What my acquaintance didn’t know was that I had had bloodwork done earlier that week and was a bit anxious about it. The immunosuppressant drugs I’m on can have nasty side effects so my doctor screens regularly to make sure everything’s working alright.

One thing we screen for is lymphoma and some of my blood cell counts were not the numbers I had expected to see. I’d googled it and determined that as long as I wasn’t seeing any symptoms (which I wasn’t) I was fine.

Unexplained weight loss was one of those symptoms.

That’s why the comment on my weight had made me nervous.

Thinness is so often equated with health and, as I’ve written about before, that is so untrue.

Instead of making me feel good and confident, their comment had just stressed me out for the rest of the day. They had achieved the opposite of what they intended and had no idea. Next time I hope I have a better answer.

Actually next time, I’d rather skip the conversation altogether. Coming out of this pandemic many of us are not the same size we were going in. Rather than commenting on someone’s body shape or size can we all agree to just say “it’s so nice to see you!”?

This is a recent photo of me standing in a field, wearing my favourite outfit: a lightweight sweater I made and a refashioned dress I’ve had since high school that always fits me because it’s basically a giant sack.

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.

Come As You Are? (thoughts on healing)

When not using my cane, my other mobility aid of choice is my walker.

It seems in church circles, whenever the topic of disability is raised, the conversation turns to healing. Whether we’re examining the stories of Jesus healing people in the gospels or recounting miraculous stories we may have heard or seen in our own life experience there’s a fascination with physical cure through prayer.

The church I attend is doing a month-long series on disability right now and healing has come up frequently. Some of the kids in my parish are doing a book study together as part of this series. (We are reading Out Of My Mind by Sharon Draper.) Many of the themes from Sunday’s sermons are echoed in the book discussion questions.

I was privileged to help lead the kids book study this past week when the topic of healing came up. The characters in the book were praying that an unborn baby would be born healthy and without disability. We talked about the reasons why they might pray that way. In the end we concluded that no matter how the baby was born the parents would love it fully. Its ability or disability wouldn’t matter because it would be their child.

The conversation then turned to whether people with disabilities want to be healed/cured. The kids figured that each disabled person probably has their own feelings about that. You would need to get to know them to find out. (Wise children!)

I then told them two stories from my own life, related to healing, and asked them to guess which I preferred.

• In the first, I was meeting with a woman at work to see if our companies might work well together. I met her in the lobby. As we walked to my office, she saw my cane and asked if I had injured myself. I explained that I have a neuromuscular disease. When we got to my office, instead of taking a seat she stood behind me and placed her hands on my neck. She began praying for a miraculous healing cure to happen right then and there. Her prayer was passionate and lasted several minutes. Finally, I told her I didn’t think we were going to have a miracle happen on the spot so maybe we should start our meeting.

• The second story was about a day that my legs started strong but, as time went on, they became weaker and weaker. By the afternoon I was holding on to the walls, leaning heavily on my cane, and obviously struggling to walk. One of my coworkers saw me and asked whether he could add me to the prayer list at his church. I said “Yes, thank you! Can I tell you how I pray for myself? I pray that I will be patient when my body slows me down. That I will be calm when my pain makes me cranky. That I will still be a helpful partner to my husband and a good mother to my daughter.” He said that he would add those requests to the church prayer list.

The kids all guessed that I preferred the second interaction. They gave some of the reasons why they thought this way: my coworker knew me already, he asked me if it was okay, it was a conversation that I got to be part of, etc. My favourite answer came from a 10 year old girl named Rose. She said, “The lady assumed you didn’t like yourself the way you are!”

I wish that all of us had Rose’s insight into questions of prayer and healing in our churches. What would it look like if we welcomed one another as we are, and took the time to learn how to love each other well? Maybe we would all be a bit more comfortable in our own skin, and appreciate the diverse and beautiful ways that God has created us.

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This post originally appeared on The Disability and Faith Forum as part of a series of posts in response to a month-long teaching series at The Meeting House on disability.

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.

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.