On Waking

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.