Preaching to myself. Have you been following the story of Nightbirde? This quote immediately floated into my brain after watching her stunning golden buzzer performance on AGT. I’ve never really watched that show, but a friend sent a link over. I’m so glad they did.
I have become quite the lackadaisical blogger over the years. I apologize- I spend what little time I have chosen to spend online mostly over on Instagram, though, even there, I have begun to post less and less. I hear blogging is making a comeback, anyhow, though I do chuckle at this- I’d have had to have left blogging to come back to it. Feels strange to be designated so ‘old school’. But I digress.
If you have been following me on the socials at all you will know that I have rapidly stepped back from writing and sharing homeschooling tidbits- and have delved deeply into illustration. There are many reasons for this. I don’t even feel like saying much about it. I only speak of this because I know some have noticed (and asked why) only my art remains on my social media accounts. I archived the rest. I feel perfectly content in this.
I don’t deny that writing is a fundamental part of me- I’ve had people begging for me to write a book for years- but it just is NOT the season. I’m okay with that.
All that to say, a story appeared anyways and wove its way through the last few months, and I’ve been meaning to share it here. There was an illustration prompt for folktales on Instagram in November. I completed two in rapid succession, and then, by force of well, everything, I could only complete a prompt a month. It’s the only paintings or drawings of any kind I’ve accomplished for nearly six months, but I must say, I’m mighty pleased with the outcome. I didn’t realize I was telling the story of my marriage at first. But it happened- and I adored every minute. I can’t wait to hang these on our walls!
There were seven prompts: Birth, Ritual, Courtship, Solstice, Death, Harvest, and Dance. I combined the last two. Captions are copied from Insta.
I give thanks for arriving
Safely in a new dawn,
For the gift of eyes
To see the world,
The gift of mind
To feel at home
In my life.
The waves of possibility
Breaking on the shore of dawn,
The harvest of the past
That awaits my hunger,
And all the furtherings
This new day will bring.—John O’Donohue
On August 28, a ricochet rebounded around American news, and then around the world; Chadwick Boseman, an American actor, most well known for his role in Marvel Studios’ The Black Panther, had died of colon cancer. That an actor had died perhaps wasn’t news; neither was the news that an actor had died of cancer. It was the fact that this actor had died of an illness that until the moment of his death had gone undisclosed to the wider public. As the story quickly unfolded, the realization dawned: this man- and incredible artist- had done most of his most stellar, moving, earth-shaking work after he had been diagnosed. It was this news that drove me to write my last post, annus horriblis. I wasn’t even quite sure what I was saying in that moment, other than I had to get it out on paper. The bewilderment and ache was certainly fresh.
I am not alone in stating that learning of Chadwick’s death has been an incredibly humbling experience. This man gave not one, but multiple- ‘performances of a lifetime’ in four short years. He spent his time elevating the conversation, pushing forward, and uplifting so many others. Former President Obama summed it up well when he said “Chadwick came to the White House to work with kids when he was playing Jackie Robinson. You could tell right away that he was blessed. To be young, gifted, and Black; to use that power to give them heroes to look up to; to do it all while in pain – what a use of his years.”
What a use of his years.
How am I spending mine?
A few other threads of conversation quickly surfaced.
There were many that were almost angry that Mr. Boseman had decided not to share his illness with the wider world, as if the viewing public had a right to his private life and his private pain- it was important, they said. We should have been allowed to know.
A community that I find myself increasingly a part of brought up another thread- that of the differently-abled community. While they strongly mourned Mr. Boseman’s death, they also bemoaned that his choice not to share his illness made their way all the harder- we’ve fought so hard against this stereotype, they said. All people are seeing is this heroic suffering. We aren’t heroes because we’re suffering. We are worthy of care even if we don’t accomplish all that he did.
Had this conversation surfaced a few years ago, I probably would have puzzled over it, not having any first-hand experience of what an illness like his could be like. Instead, this conversation is all too fresh and salient to me. I can understand all sides of it, and there are lessons I’m drawing from Mr. Boseman’s example I can’t even begin to articulate yet.
Here are the things I do know:
We owe no one our story. Our journey of suffering is between ourselves and the God that made us. That anyone else is privileged to enter into that sacred space is a blessing and, I repeat, a privilege. Treat it accordingly.
I find myself, five years on in our journey, wishing that I had not said so much, nor opened our lives so openly for public scrutiny. I didn’t understand this sacred equation- not everyone is worthy of it. I don’t say this to be cold-hearted or unkind. Very few people truly earn the space of walking alongside us in this most difficult of journeys. What we carry is incredibly heavy. We need those around us that are truly willing to bear it with us, and those people are heart-breakingly rare. We carry too much to bear the grief and actions of those who won’t endure the wounding with us.
In ways I couldn’t even begin to understand then, I profoundly understand Mr. Boseman’s desire to keep his illness to a select few whom he trusted. I struggle somewhat at this point to be so publicly defined by what we’ve been through. I have begun to feel very one-dimensional, as if all that can be seen of me is the suffering we have endured. I’m no hero; I’m no saint. I get very tired of being compared to one.
Suffering and sacrifice go hand in hand.
Five years ago, my family began the bewildering journey of chronic illness for two children in our family. It is, as I mentioned, the discombobulating journey the whole world now finds itself on when Covid-19 crashed the party in March.
Suddenly daily life became dangerous to my kids. Suddenly, basic ‘little’ bugs- a snotty nose, a light fever- could mean death if not handled properly. We wore masks, and gladly, on transfusion days, donning our little booties and caps and scrubbing down our hands. We self-isolated away from our compromised family members when we came down with something so they wouldn’t run the risk. We learned how to disinfect and care for our home in a heightened way, how to provide care for an open stoma- so many, many things. These kindnesses, these acts of love, for these two little ones whom we cared for (and care for) so much, were not burdens or impositions of our freedom; they were simple, physical acts of sacrifice and love so that they could breathe easier, rest safer.
I struggle to understand why our world is failing to understand this simple truth so profoundly. I love my children- I understand that every single one of the hundreds of thousands of people in the United States who have died and are dying of Covid-19 are children of the Most High God- therefore, it is an easy, light burden to bear for their sake.
We have no idea the battles someone is going through. Be kind, be kind, be kind.
My kids’ illnesses are mostly invisible to those around us. You cannot see what they deal with, or what they suffer- there are no outward markers of disability for someone to ‘place’ them with- to force their understanding. This- this– is a blessing– and a curse.
I completely understand and agree with the many differently-abled persons who spoke up after Mr. Boseman’s death. They are worthy of care, my children are worthy of care- of diginity- of personhood. Full stop. Not for what they do or don’t do- for how they suffer or don’t appear to suffer- they deserve care regardless. They do not exist to perform to some twisted cultural standard that defines them as enough or not-enough, and frankly, that goes for all humans. But I’m focusing especially on this particular community at the moment.
Love anyways. Be kind anyways. I have rapidly come to realize in the last few years that I never regret the times I’ve chosen love and kindness, even at great cost, but I’ve always regretted the times I have chosen to judge or speak unkindly or assume I know what is really going on in someone’s life and acted according to my very misled assumptions.
We are humans, and we are fallible, and we make mistakes. Hindsight is a fickle thing. I can look back and see so many mistakes that we made in the early days of my kids’ illnesses. I can’t even begin to tell you some of the things that I’d do differently, had I to do it all over again! But here’s the thing- the reason I can look back and say all that? I lived it and I learned from it. I know things now that I carry forward into the new things ahead that I never, ever could have known, had I not lived it. Don’t knock the journey. Don’t knock the mistakes. They brought you to the moment you now stand in. And yes, the mistakes really really hurt, and they have scarred deeply. But I wouldn’t trade the wabi-sabi beauty of my life today for having an easy journey free of mistakes and sharpening and breaking into something new. I wouldn’t stay in the chrysalis. I was made to fly. You are too. Trust that.
I’m sure by now you’re catching an underpinning thread, and you’re wondering what that second photo is all about.
A few days before Chadwick Boseman died, I was diagnosed with a degenerative, life-long disease. My journey with suffering is taking an even deeper turn.
I’m not really ready to talk about it in any expansive way, yet. I may never be. And that’s okay.
I do know that I carry Mr. Boseman’s memory and example within my heart during these incredibly trying days as I negotiate a reality that is changing faster than I can even wrap my mind around it, let alone put words to. If there’s anything I want to carry to the shore of the dawn of whatever mornings I may be gifted by the Lover of my soul, it’s that I want to live to the depths and the marrow of life and spend lavishly those minutes and hours in the service of the One who formed me. Mr. Boseman showed me how it might be done, and I am beyond grateful that I was granted even small entry into the testimony of his life. May his memory be eternal, as my faith teaches me to say.
It has been over a year since I have written here.
And what a year it has been.
Tremendous loss, both public and private. I confess that I can no longer take in the news much for my own heart’s protection. But I can’t help but think that in every loss splashed across the news, there’s so much to each dear one’s story that we weren’t even aware of. I know this because of my own lived experience. Be kind, be kind, be kind, my dears. You never know what that human across from you might be enduring today.
I have found it somewhat disconcerting to watch the whole world plunge into the upending of reality that started for me a few years back. So many certainties shattered. Time shattering to a stop and then reassembling in an absurd mosaic that never quite makes sense again. This, I know well. Before the specter of coronavirus ever rose its ugly head, my family began to experience the utter insanity that is chronic illness. It doesn’t make sense. It is terrifying. It is loss after loss. It is losing friends, and activities, and all manner of things. And now we watch the whole world wrestle with it. It is an odd feeling. Having lived through what we have lived through, I find myself fighting cynicism and bitterness for our wider world- uncertain that they will find any easier of a journey than we have.
For every headline I think of the massive medical bills that will show up after that dear one’s death, at the worst possible time. For every choice, thousands and thousands losing their jobs, their livelihoods, their homes.
And yet, and yet.
This year, (and every year), every moment…belongs to God.
This is what I can say, having walked in the darkness, even in my cynicism, my bitterness, my despair, for every moment I have felt lost, alone, and abandoned: I can recount to you just as many, if not more, times that the Light has poured in through all the cracks. The warmth of friendship, faith, and kindness. The ones who have caught us as we tumble and set us back upright. Perhaps even more importantly, the ones who got right down in the dirt with us and cried right alongside us as we mourned.
This is what I can say: Hold on. Trust. Breathe.
You are loved.
I’m not yet sure how this will turn out, but that’s the beauty of blog writing – it’s an invitation to enter into the middle of a story without the pressure of either having to know the beginning or close it up neatly.
One of the most stunning mysteries a writer discovers, if one puts any effort into the craft, is that ninety times out of a hundred, the audience and the reason for writing are rather secondary; the first priority is to pin those elusive, wriggling words floating around the brain down on paper where they can’t run away anymore, bring them into the light, find the shape of them. The shapes only heft into view after much wrangling, and even then, they are fuzzy, out of focus. You have to take hard looks all about before you get a clear view.
A writer’s prayer: give me clear vision.
My previous post has been haunting me since I published it. I thought I knew why I was writing it. I thought I understood the audience: the mysterious and not so mysterious dear readers who stop by whenever I have something to say, bless their patient hearts. I am realizing though, that every missive published here is a letter more to me than to the universe; if any audience could really be named, it might be my children.
Maybe I am writing to the child in myself:
Here is the world. Beautiful and terrible things will happen. Don’t be afraid.
Here is the world.
I don’t think I realized what a slow processor I was until Emily began writing about it a year or so ago. I used to think my time delay was unique to me and was always discouraged and berating myself; I’m incredibly heartened to realize that there are whole tribe of people who react the way I do to the world. I used to think it was a curse. I am beginning to accept it as a gift.
The words I laid out here the other day are taking further shape for me, haunting me, pushing me.
A writer’s prayer: give me clear words.
They are not easy to choose.
I live between so many worlds. I think I’ve always known that, always known that I live in the outskirts and margins of places, tucked into quiet pockets. But I don’t think I realized how profound the remove was until Election Night.
There is no way to describe what happened on November 7 in the our national pysche. An inchoate howl? A keening? A roar? A clamor?
A writer’s prayer, a mother’s prayer: give me courage.
Beautiful and terrible things will happen.
I was awake in that weird dawn because of a child who cried out in the throes of a nightmare.
Having tucked her back in, I wondered at the results, unclear as they were before I headed to bed, and so I checked in for a moment. I should have waited for the morning. I couldn’t fall asleep after that; I just sat in mute horror as I watched the noise scroll past my screen until you wanted to clap hands over your eyes, as if it would block it out.
I stood and watched in horror as blog post and news article immediately began to circle in the wee smas before most rose from their beds, so very quick to censor the pain, the anger, the hope, the triumph. The level of noise, the words, every writer so quick to put spin on something un-spinnable, barely nameable, so new in its infancy- the speed and clamor of it all upset me far more than the actual election results.
You are talking about humans! I wanted to scream. You are talking about your friends! You are talking about people you love! You are talking about people who are loved! You are talking about your mothers and daughters and sisters, you are talking about your fathers and sons and brothers. You are talking about your friends who you eat and drink with! Real flesh, real blood. Be wary, be careful. HUSH!
I have echoes of this reaction every time a major event happens in our nation, not just on Election Night; good or bad, but especially when some sort of trauma happens, especially if that trauma has roots in dehumanizing behavior (like a mass shooting). It troubles me that our humanity is subverted for a quick newspaper title, a five second sound bite.
The mama in me wanted to escort everyone to their rooms, remind them to take deep breaths, tuck them in, kiss their foreheads. Tell them we’ll talk about this in the morning. But you can’t do that, and it’s not my place. But that’s where I was. What I wished I could do.
How many times I have told a child, (how many times have I told myself?) to find peace before they said and did things they could never walk back, never undo, never unsay? It was like watching such a regrettable moment writ large across a national consciousness.
A writer’s prayer, a mother’s prayer, a believer’s prayer: help me to see.
In my last post, I was writing to all those many people who poured out words in that dark, early morning. I realize that now.
I was writing to myself. I was writing to the parts of me that want to offer a quick fix people’s pain, people’s emotions, people, period, because being human is messy. People are messy. Being a human, being in relationships with humans- it’s rarely comfortable. It can be as beautiful or as ugly as we chose to make it but it will never be perfect. Or easy.
Don’t be afraid.
The odd dichotomy of enduring through suffering is that it leaves you scarred but makes you fearless. Once your worse fears have been realized, the rest of it doesn’t quite seem the big hairy problem you thought it was. If you will allow it, suffering will also allow you to see the scars written all over your fellow humans. It will soften you. It will humble you. It will gives you eyes to see, ears to hear.
I’m not afraid of people’s pain as I once was. Perhaps more importantly, I am not afraid of people’s suffering or the fact that answers don’t come easily. I had to live through it to understand how strange a world can be.
So how, then, shall I live?
I think of my children again, the people, the humans I want them to be, that they already are, the world I want to give them, the world they are finding within themselves.
It was the words of comedians and poets that brought it to clarity, the shape finally named.
It is usually to them I turn to when I cannot find the words.
This, from Jim Gaffigan, comedian, Catholic, father of five:
All I want for Christmas is for my country to not get divorced.
— Jim Gaffigan (@JimGaffigan) December 24, 2016
This from John Blase, one of my favorite poets bar none, wanderer, father of three:
That’s kinda where my head’s been, seeing myself standing in a room full of people much like that final scene in It’s A Wonderful Life, looking around at the eyes gathered, with a goofy George Bailey look on my face thinking “How on earth did I get here?” And then that old familiar pain: I remember that something has to die in order for something to be born.
And so I write, a letter to myself, a letter to my children.
We are the Children of the Great Divorce. We live in the now and not yet. Between heaven and hell.
And all the time — such is the tragi-comedy of our situation — we continue to clamor for those very qualities we are rendering impossible. You can hardly open a periodical without coming across the statement that what our civilization needs is more “drive”, or dynamism, or self-sacrifice, or “creativity”. In a sort of ghastly simplicity we remove the organ and demand the function. We make men without chests and expect of them virtue and enterprise. We laugh at honour and are shocked to find traitors in our midst. We castrate and bid the geldings be fruitful. – CS Lewis, The Abolition of Man
I had forgotten what this meant for many years, but Aslan’s name is whispered. Let us, dear ones, my children, let us be of courage, men and women of chests.
Ye can know nothing of the end of all things, or nothing expressible in those terms. It may be, as the Lord said to the Lady Julian, that all will be well, and all will be well, and all manner of things will be well. But it’s ill talking of such questions.”
“Because they are too terrible, Sir?”
“No. Because all answers deceive. If ye put the question from within Time and are asking about possibilities, the answer is certain. The choice of ways is before you. Neither is closed. Any man may choose eternal death. Those who choose it will have it. But if ye are trying to leap on into Eternity, if ye are trying to see the final state of all things as it will be (for so ye must speak) when there are no more possibilities left but only the Real, then ye ask what cannot be answered to mortal ears. Time is the very lens through which ye see — small and clear, as men see through the wrong end of a telescope — something that would otherwise be too big for ye to see at all. That thing is Freedom: the gift whereby ye most resemble your Maker and are yourselves parts of eternal reality. But ye can see it only through the lens of Time, in a little clear picture, through the inverted telescope. It is a picture of moments following one another and yourself in each moment making some choice that might have been otherwise. Neither the temporal succession nor the phantom of what ye might have chosen and didn’t is itself Freedom. They are a lens. The picture is a symbol: but it’s truer than any philosophical theorem (or, perhaps, than any mystic’s vision) that claims to go behind it. For every attempt to see the shape of eternity except through the lens of Time destroys your knowledge of Freedom.” – CS Lewis, The Great Divorce
Be kind, my dears. Be compassionate. Choose love and life every time. Remember that the first commandment is to love God, and the second is to love your neighbor. Always choose love.
If we are going to be destroyed by an atomic bomb, let that bomb when it comes find us doing sensible and human things — praying, working, teaching, reading, listening to music, bathing the children, playing tennis, chatting to our friends over a pint and a game of darts — not huddled together like frightened sheep and thinking about bombs. They might break our bodies (a microbe can do that) but they need not dominate our minds. – CS Lewis, On Living in An Atomic Age
I add, here, dears, that atomic bombs and microbes have different names sometimes; but you know them all by how they are called the Other. The articles preceding the nouns are all “those” and “thats” full of fear. Those people. That thing different from me. Let those and these and thats find you at peace. Find you loving and doing and praying.
The blessed Father St. Anthony put it this way:
“A time is coming when men will go mad, and when they see someone who is not mad, they will attack him, saying, ‘You are mad; you are not like us.’”
Pray for peace, dear ones. Do not go mad.
The blessed Father St. John of Kronstadt said this and it is ultimately my hope and prayer for you, for me, for your father, that we would chose the real world:
“There is, my brethren, a true, real life, and there is a false, imaginary life.
To live in order to eat, drink, dress, walk; to enrich ourselves in general, to live for earthly pleasures or cares, as well as to spend time in intriguing and underhanded dealings; to think ourselves competent judges of everything and everybody is—the imaginary life; whilst to live in order to please God and serve our neighbors, to pray for the salvation of their souls and to help them in the work of their salvation in every way, is to lead the true life.
The first life is continual spiritual death, the second—the uninterrupted life of the spirit.”
Here is the world. Beautiful and terrible things will happen. Do not be afraid.
With more love than you can ever know,