Last week a friend rang my doorbell for a walk. I opened the door, greeted her and stepped out into the cold January morning, my eyes squinting into the bright sunshine and my breath suspended in the air before me. She asked how I was. I answered with a sigh, “Oh, OK. How are you?”
“I’m OK,” she said slowly, before adding, “Worried about you.”
We started walking. I told her it had been a hard week, for whatever reason. She drew on a method we both value from author and researcher Brené Brown and said to me, “The story that I’m telling myself is that I did something to upset you.”
“Oh, lord, no,” I said. “Just my usual stuff. Nothing you did.”
She had noticed my text messages weren’t so lighthearted or frequent. She wondered if it was her, and I appreciated that she asked instead of silently questioning. She went on, “Has anything about Chris’ health changed?”
“No,” I said, and my voice gave way to tears. “I’m just tired of my life.”
She told me she was sorry. She told me that it’s shitty. I said reflexively, “It’s OK,” and she said, “No, it’s not OK. It’s OK that it’s not OK.”
“You’re right,” I said. “It’s not ok, but I’m going to be OK.”
It was enough. She saw me, she heard me and she loved me. I took a deep, if shaky, breath and wiped my tears. We knocked on another friend’s door and the three of us spent the rest of our walk in light-hearted conversation.
I am not afraid of my sadness. I do not try to stuff it down or ignore it. I hold it with reverence in careful hands. I know it is a valuable and integral part of me. I know it is teaching me and shaping me. No, I am not scared of my sadness, but even sadness embraced grows heavy, and I am tired.
I am tired of carrying my sadness, tired of writing about my sadness.
So many days I think, today is the day I write about hope. If you are tired of your own sadness, I tell myself, think how annoying it must be getting for others to read about it.
But I can’t escape it. The kids and I are reading the Laura Ingalls Wilder books, and she writes about putting the horses on a picket line, where they can graze the grass in a limited circle around a fixed point. I’m on a picket line, I think, and no one is coming to move me to greener grass. I spend my days walking in this circle of sadness until I’ve worn the ground under me completely bare.
I search for ways to move my picket line. In the hours I spend making Chris’ food, I listen to podcasts on grief, on dealing with trauma and tragedy. I listen to books about loss, and make lists of things to do in a day to settle my mind — read more, journal daily, get 10,000 steps, meditate, drink more water — all small things that I employ in my effort to figure out how to live with the sort of grief that Chris’ illness brings.
For weeks I have been examining my grief, and it feels as though there is a difference in my experience and how most books and podcasts address the topic. The grief they counsel on often revolves around a trauma or the culmination of something — the loss of a loved one, or of a cherished relationship or job, an illness that ended in tragedy or recovery. Something happened. It was awful, and those left in its wake are grieving.
Sometimes grief is a season. Mine feels more like a way of life.
I have wrestled, even in my own head, with how to describe my grief. I wrote this post, and then I went to take a shower. Standing in the steam I felt unsettled, and I knew what I was scared of — describing my grief in a way that could make it seem as though I am mitigating other grief. I thought of my friend, the one who’d asked me last how I was, who knew something was off. She lost her mom when she was 26 and her dad when she was 33. Her mom didn’t see her get married, never held her two boys. And of another friend, who has two young girls and lost her husband two years ago to ALS.
I asked for their thoughts.
“I think we all feel like our own loss is different,” my friend who lost her parents wrote. “I remember going to grief groups and reading things and then thinking, ‘But your mom was older,’ or ‘Your mom got to meet your kids.’ I wonder if we all feel this way to a certain extent?”
Yes. She was right. And so was I. My grief feels different for one reason above all others — it is mine.
And suddenly I truly understood what author and grief researcher David Kessler meant when, speaking on an episode of Brown’s podcast “Unlocking Us,” he said, “The greatest grief is always your own.”
My grief is vast and expansive and endless. It’s alive and changing and in front of me and behind me and on all sides of me. Even on the days when nothing new is added to the pile of losses, there is the constant reminder of what’s already gone — the three times each day I feed my husband with a syringe, the hours I spend liquifying the food I will inject directly into his stomach, the sad look on his face when he walks in the door from work and sees something I cooked on the counter that he loves and cannot eat, the smile missing from his face when he tells a funny story, the hole in my heart that seems to just keep growing. And there are the impossible-to-ignore reminders of what could come next — his good hand is sore, his lips won’t close around his coffee cup any longer, his voice is harder to understand one day.
My grief is relentless. It comes as a package deal, right alongside all the regular troubles we all have in life. The bad days with kids, the arguments with your husband, the stubbed toe when you are cleaning, the broken glass when you are doing the dishes. My grief mixes with all the regular sadness and makes it exponentially bigger, everyday frustrations coalescing with the ticking time bomb of mortality, like when your kids are doing a science experiment and they mix baking soda with vinegar and all of the sudden it’s overflowing everywhere, leaving a much bigger mess than either element would have been on its own.
And then, after a little squabble or a hard day or a stubbed toe has erupted into something much larger, the guilt comes. Guilt for not staying present, for not offering enough empathy, for being angry, for not giving your kids a happier memory of whatever innocuous day or event has just passed and, most especially — the deepest-cutting guilt — that of precious time lost.
I have been searching for the book, the podcast, the expert who can show me how to live in this constantly evolving, growing, anxiety-inducing grief, for the guide on how to keep going and seeing the joy in a world where both ahead of me and behind there is so much loss, for a how-to on finding peace with an existence where the illness is terminal and also interminable.
For how to stop feeling I need to add gratitude each time I share my sadness. “This is hard but we are so grateful he is still here.” Of course I am grateful for that. Why do I feel I need to say it? To constantly couch my sadness, to buffer it with positivity? To think to myself, “I should be grateful. It could be worse.” Or, worse yet, to worry that others will read my words and think the same.
I shared those fears with my friend who lost her husband to ALS. I told her I felt worried I would seem ungrateful, that my complaints about my grief would seem petty and selfish, because I know she wishes she could have this same “problem” I have — sadness, yes, but with a husband who is here to hug me and tell me he loves me.
“Oh Kelsie,” she wrote. “I close my eyes, and I’m in your exact shoes, so your posts would never, ever hurt me. Quite the opposite, really. It’s like I want to send the link to certain people who to this day still don’t get it. So they can read your words. They feel like my words.”
Chills ran up my arms, and my throat tightened. My grief is mine. Her grief is hers. But, really, we are all out here in this huge, messy, grief-riddled world together, limping along, offering a hand, reminding each other there is still so much beauty left to see, so much love left to feel, so many connections left to make.
Here is what I know. Grief is my constant companion, and I cannot escape it. It clings to me the way my children, as needy toddlers, used to wrap themselves around my leg when I was standing in the kitchen cooking dinner. I am constantly attuned to its needs. I pay heed when it feels urgent. I watch it closely, curiously, when it is dormant, when it lets me laugh and smile and think of other things. When are you coming back, I wonder? Will you come quietly? Will you sneak up on me slowly or will you sweep in with a fury that knocks me off my feet?
In bed at night I sometimes feel I am curled up with my grief. It greets me as my head hits the pillow. It shepherds me off to sleep and, when I open my eyes in the dark of the morning, it greets me anew. In the quiet, it is gentle, not harsh.
“It’s a new day,” it seems to say to me, “and I’m still here.”
I stand in the bathroom and brush my teeth. My eyes adjust to the light, and my heart adjusts, again, to reality. I stare at my reflection in the mirror and remind myself — today, every day, you are sad. This is your life. There is no out. There is no quitting. Your kids need toast and school lunches. Your husband needs medicine and syringes of food. Your coffee will get cold before you can finish it. You will reheat it in the microwave, skim off the curdled cream, take a sip or two and repeat the whole process 10 minutes later. There is no running away. There is no sitting down in the middle of the floor to protest like a small child at the supermarket.
Your people, all three of your people, rely on you. This is your reality. Now, what are you going to do with it?
I am going to get up. I am going to make the toast and the lunches, crush the pills, dissolve them in water and put them through Chris’ feeding tube along with his breakfast. I am going to reheat my coffee as many times as it takes until I give up, dump it down the sink and load the dishwasher. I’m going to play a happy song and watch my kids dance. I am going to hug them and kiss them and take them to school. I am going to tie Chris’ shoes and kiss him goodbye.
And then I am going to sit in my quiet house and hold space for my sadness, however much it needs that day.
I am going to tell myself that this is hard, and that’s ok. I am going to go for a walk and read a book and pay attention to the sun and the blue sky and the words on the pages. Some days those things will feel richer than others, and that’s OK. Some days life will feel full and warm, and some days it will feel empty and cold. Some days my grief will sit quietly off to the side, and I will bask in the relief, and some days it will cling to me and demand all my attention, and that’s OK.
Either way, I will carry it with me wherever I go, and that’s OK, too, because every day I will step out into the world knowing that even though my grief can feel so lonely, I am not alone. I am out here in this world of grievers, of people with broken but hopeful hearts, of people who are cutting this path, too, by doing the most basic of things — putting one foot in front of the other.
I will step out into the world with all of them, and I will know — we are going to be OK.