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.

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.

Let it be

There’s a lot of knitting and singing going in my life right now.

This is the hardest part of the pandemic for me. It feels like a personal hour of darkness.

At the beginning, everyone slowed to the speed of the most vulnerable. The whole world stepped into my shoes for a moment and it was comfortable.

Now though they’re stepping out into the world and moving on. To them it feels like small steps but for me those steps are insurmountable.

I’m feeling left behind. As the world opens up, my world closes in. As other people have more contact points in their social circles I feel the need to withdraw from the few points of contact I had. The risk is just too high that contracting COVID-19 would seriously damage me, or worse.

I know other disabled and immunocompromised people are feeling it too.

As I withdraw I have been finding comfort in music. I’ve been playing ukulele and singing pretty much every day and I’ve been turning to some old favourites. Worship choruses that I used to sing at youth group, songs by Delirious? and the Newsboys, and hymns from my childhood.

One song, more than the rest, comforts me in this time – Let It Be by the Beatles.

As I sing it (over and over because I’m working on my finger picking) I think about the words and what they mean. 

It speaks of broken-hearted people being parted, which resonates deeply. 

Times of trouble are evident in the world at large when I check the news each night. 

My social media feed is filled with stories of hope, like a light shining through a cloudy night. 

I don’t know exactly what Paul McCartney meant when he wrote all these words; I once read he was inspired by a dream about his mother, Mary. But the lyrics make me think about the other, more famous mother Mary. 

Jesus’ mother.

When Gabriel came to her with the news that she would give birth to God’s son she gave a simple response to such a complicated task. “Here am I, the servant of the Lord; let it bewith me according to your word.” (Luke 1:38 NRSV, emphasis added)

Compared to mothering the Saviour of the world, navigating the lifting of pandemic restrictions right now seems downright simple. However, it impacts work life, home life, and relationships and there are no instructions on how to figure it out well. It certainly doesn’t feel simple and there is no end in sight. 

I pray that I would approach this complicated task with a similar heart posture to Mary’s. If I keep her words of wisdom in mind, perhaps I can just trust God and let it be.

(Crossposted to the Disability & Faith Forum.)

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.

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.

Myasthenia metaphors – A Mouse, An Elephant, and A Cat (or, The Gift of Pain)

Chronic pain is my constant companion, like an unwelcome shadow that follows me everywhere I go. Sometimes it hovers just at the edge of my mind, like a mouse hiding in the cupboards, small and subtle enough that I can ignore it. Other times it’s like an elephant sitting on my chest, immobilizing and forcing me to think of absolutely nothing else. Usually, it’s more like a cat.

Just like a cat presses against and curls around you while you’re engrossed in a task, my pain makes itself known as I move through my day.

And just like a cat leaps away from your hand the moment you’re free to give it the attention it demands, my pain often hides as soon as I can spare a minute to devote to it.

But once I’m engaged in my next task it’s back, wrapping around me, threatening to trip me up and bring me crashing down.

Whether a mouse, an elephant, or a cat, it is never welcome in my home.

Until a few weeks ago. My perspective changed when I was reading Fearfully and Wonderfully: The Marvel of Bearing God’s Image by Dr. Paul Brand and Philip Yancey.

Dr. Brand is a leprosy specialist and he explains that leprosy ravages the body by deadening the nerves.  As nerves die in various body parts patients are unable to feel pain and so, unknowingly, damage themselves.  Their hands and feet get bumped, burned, or scraped and because it goes unnoticed the wounds fester.  The eyes fail to tear and to blink but because there’s no discomfort, the eye dries out and the person is blinded. 

The lack of pain means a lack of response to danger and consequently the body slowly, piece by piece, disintegrates.

This realization made me appreciate my physical pain because I know that it serves as an alarm system. When my spine is screaming I lie down. When my eyes ache from the strain of using them, I rest them. My body tells me what it needs and I respond. I respond and the pain subsides.

I never thought I would appreciate the gift of pain.

While presenting a workshop at a conference a few months ago pain is what told me to sit rather than stand, and to wear my sunglasses indoors. And I’m glad for that because it meant I made it through the whole day and enjoyed learning from all the other presenters.

An alternate version of this post appears on the Disability and Faith Forum