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.)

Spiritual practices in times of crisis and solitude

This pandemic means living a small, quiet life at home which gives me more time to think. It also means everyone else is also home so my ideas are half-baked and rarely get out of my head, into words. So although I have many thoughts I haven’t been writing here much.

I have been writing a bit for work though which has been new for me.

For the first few weeks of the pandemic I stayed home and used vacation time. We didn’t know how long this would last, all my work evaporated (I was helping to run two conferences in April which were both cancelled), and I knew I didn’t want to be exposed to the virus so I started self-isolating right away.

As time went on though and we all started settling into new routines, people were redeployed to different departments and I was assigned to help the spiritual care team at work.

It has been a pleasure and a challenge to dig deep and share some of what I’ve learned over the past few years. (The technology side of it has also been a challenge at times but I’ve learned a few tricks which is nice.)

So far I’ve had two stories/articles published and I am particularly proud of the most recent so I’m going to copy and paste it here so that I’ll always have it.

Raised in a Pentecostal Christian faith tradition, growing up my faith habits were both communal and personal. We met together for corporate worship on Sundays and at mid-week small group meetings but most of the rest of the time my worship was individual and internal. I read my Bible, formulated my prayers in my own words in my mind, and reflected on what I had learned at church.

When I hit a time of crisis and solitude several years ago I found that these learned patterns were not enough to sustain my faith. My mind was too full of anger and fear to formulate prayers made of words. My heart was full of doubts that I wasn’t ready to expose to others yet. My body failed me in ways that meant I couldn’t participate in church as usual.

It felt as though my belief system was crumbling. I no longer had a polished faith, easily articulated and defendable.

I realized what I needed were spiritual practices that could bear the weight of my burden. I needed practices that I could practise as I struggled through my time of crisis.

Slowly I collected and built a repertoire of practices that allowed me to connect with God using my body as well as my mind and soul. During the time of COVID-19, many of us are experiencing solitude or the loss of communal, in-person worship in new ways. For some, this might bring on existential questions and struggles with doubt. I hope that these spiritual practices will help others in the ways that they have helped me.

• Find anchors in your daily life. They can be traditional prayer anchors such as saying grace before meals, or praying before bed, but they can also be personalized to your life. Filling your favourite mug with hot coffee every morning can be a moment to thank God for warmth and small comforts in your life.
• Read the scriptures in a way you haven’t before. Try a new translation, or paraphrase like The Message. Listen to the Bible as an audiobook. Read or listen to The Story, an abridged version of the Bible that weaves all the pieces into one cohesive narrative. Go for something really creative like The Word on The Street or The Action Bible.
• Light a candle as an invitation to the Holy Spirit to enter your home and your life. The presence of the flame throughout the day can be a constant reminder of the Spirit’s presence with you.
• Intentionally follow people on social media who you find uplifting and encouraging in your faith. Pope Francis tweets regularly. Scott Erickson posts wonderful art using the tag #spiritualformation on both Instagram and Facebook. Dion Oxford shares some beautiful insights and prayers on his blog. Little Way Chapel offers liturgies to do as a family in your home.
• Use a tangible tool, like a rosary or prayer beads to keep your mind grounded as you pray. Alternatively, use your fingers. Pray for different people in your life, one person per finger.
• Practise praying without words. If we can communicate with each other without using words (and we know we do) how much more so with our Creator? Prayer can be an image, a feeling, a memory, a song, or a scream. Let your heart call out to God.
• Use breath prayers to practise the presence of God and reduce your anxiety. Ember Collective shares great examples, such as (inhale) The Lord is my refuge…, (exhale) I will trust in him… Breath is reminiscent of the creation of man, of God breathing life into dry bones, of the mighty rushing wind on the day of Pentecost. Breath is evidence of God within us.
• Find podcasts that nourish your soul. If you’re grappling with doubts and are afraid to speak them aloud, hearing others have those difficult conversations can reassure you that you are not alone. If you struggle to put words to prayer, listening to someone else pray can give your heart something to resonate with.

I still don’t have faith perfected, and I never expect to, but I have found that leaning on spiritual practices that embody my whole self, and not just my intellect, has deepened my faith immensely. Given that incarnation is such a central concept of Christianity it makes sense that God would invite us to show up wholly present to commune with him. Let’s accept that invitation.

You can find the post here and another on Seeking Out the Prophetic Voices of People with Disabilities.

I’ve also updated my About page with links to any other writing of mine on the internet.

I’m going to try to sit down and actually get my thoughts out onto the page(/screen?) because when I do it, it feels good.

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.

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.

Resolutions and intentions

Same, girl. Same.

Everyone’s taking about resolutions and intentions for the new year and I don’t usually make any because it seems arbitrary but I guess it is a good excuse to reflect and tidy up your life so here goes.

First, a resolution – I want to read at least one (preferably nonfiction) book each month. Last year I only read about four so this is a big increase but I think it’s feasible.

Second, an intention – or maybe it’s more of a mindset shift. And to be honest I’ve already been working on it for a couple months but I’ll continue to work on this over 2020 until it takes hold.

I want to change the way I think about my body.

I often refer to it as a prison and that’s because it’s truly how it feels. I’m stuck in this thing that hurts me and limits me and controls large portions of my life.

I know that words have power though and if we change our words our thought patterns will follow so instead of a prison I will think of my body as an antique house.

There’s nothing you can do to improve a prison when you’re a prisoner inside. You’ve been defeated and you have no control. But an antique house is something you can take ownership of. You can restore the finishes, replace the broken parts, spend some money and time and effort and end up with a place that’s quirky but quite comfortable.

When I get frustrated by my pain or limitations I’ll think of this old house as needing some repair and instead of giving up and eating a bag of chips, I’ll drink some more water and do some stretches.

Instead of getting mad that I’m moving slow and then being cranky at the world, I’ll lay down and get some proper rest.

I’ll wrap myself in warm blankets. I’ll take my meds on time. I’ll investigate alternative therapies. I’ll eat healthy foods. I’ll shower more so I don’t feel gross.

I’ll do what I can to restore this old house. It’ll never be perfect but it’s mine and it will be good.

My chart

This post is brought to you by the pain in my back during a fancypants gala event with my husband’s work. I’m laying on a church pew in the hallway while the party continues. I might as well write.

Last week I had an appointment with my endocrinologist. Usually I get bloodwork done one week prior so we can discuss the results, I bring a week of glucose readings written out to examine, and I carry a list of various other questions. This time, due to various life circumstances, I showed up almost empty handed. And that was fine because my endocrinologist is phenomenal.

She wrote me some prescriptions, completed the paperwork so I continue to receive government grant money (have I mentioned that I love the health care system here?), and said it was fine for me to go down to the lab after our appointment to get that blood work done.

I thanked her and said I’d call her secretary in a week to get the results.

And then she changed my world.

She told me that the Ottawa Hospital has started using a program called MyChart. Patients get an PIN from the hospital and enroll online. That sounded pretty good so I set it up before I left and logged in online a few days later.

I saw my most recent blood work (not great but okay) and then I scrolled down and realized I could see every piece of information that the hospital has written about me over the past year.

I saw the records of all my IVIG infusions and all my plasmapheresis treatments. I saw the results from every time they did blood work. I read assessments done by physiotherapists, respiratory therapists, neurologists, haematologists, immunotherapy doctors, anaesthetists, surgeons, and the pathology lab.

I read a minute by minute account of what happened during my thymectomy in January and as I was reading about all the manipulation my body went through while I was unconscious I though it was no wonder I was so sore when I woke up. They cranked my body into an optimal position for surgery using an inflated bag and various other props. There were multiple steps to removing my thymus and although I only had a few steri strips on my outer incision my insides were covered in stitches.

Picturing myself positioned like that, exposed, intubated, and with my eyes taped shut, I felt very vulnerable. I closed the website and went back to work.

Over the rest of the day I was haunted by that sense of exposure, invasion, and vulnerability. But that faded as I realized how grateful I was to have access to all that information. And then I felt empowered.

More empowered as a patient than ever before. This is a huge step that the hospital is taking. The former hierarchy of doctor patient relationships is being replaced by a more equal, lateral, relationship. By giving us access to our information in such a transparent way they are explicitly stating that we are partners in our own health care.

I love it!