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. 

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.

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.

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.

Mothering/Momming

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

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

Matching dresses.

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

Matching tattoos.

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

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

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

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

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

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

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

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

Off to find a cherry tree.

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

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

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

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

But.

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

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

Comparison

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

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

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

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

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

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

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