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.
27 responses to “#20: The Weight of Grief”
I lost my husband suddenly to a heart attack in 2018 you have described my grief to a tee. Thanks for the information my counselor said to have loved greatly is to grieve greatly and I have!!!!!!
I’m moved and more grounded at the same time. Thank you for your generous truth and expanding heart 🙏
This is exactly how I felt while helping my husband on his journey toward his last day on earth. And, it is still how I feel now that he’s gone.
We are all more alike than we realize.
Thank you so very much for sharing your grief with me.
I lost my husband 5 months ago to lung cancer. Thank you for reminding me that my grief is mine! I have people around me who want to tell me how I should be feeling. That I should not be angry, I get angry because people who’ve not experienced grief assume to understand what I’m going through. I sometimes just need people to listen and not speak. Thank you again, for reminding me that my grief is mine, so however, I express it is ok. Because “I’m not ok, but I will be ok.”
Beautifully written and put my own grief into perspective, I lost my mother recently my best friend.
Your expression of your grief resonates with me. I am a member of your tribe, those of us that bind together through our grief and love that doesn’t die against all odds. I felt every word you wrote as tears ran down my face. My brilliant husband was diagnosed with GBM (terminal stage 4 brain cancer) on March 9, 2019. I watched the essence of him be slowly destroyed over the next 16 months. He died in tiny increments some days, and by alarming speed on other days, and I died right alongside him. I showed tremendous strength the likes of which I didn’t know I was capable of.
I also experienced a pain the likes of which I didn’t even know existed. I survived it even when I was sure I wouldn’t.
Why doesn’t humanity prepare us for this? I will tell you this, humans are very adaptable creatures. Keep writing to those of us who need to hear your words. We help each other in each other’s stories. They make us stronger.
We tell our stories, we acknowledge our pain, we grieve collectively.
I hear you❤️
Thank you for all your words! I have just found your website, I only wished I found earlier in my grief. I lost my mother in December of 2019, so it has just been a year, I am still very deep in my grief. My mom was suddenly diagnosed with stage 4 terminal brain cancer, 10 months she lived, once diagnosed. I couldn’t grieve during all the Dr appointments/ chemotherapy and radiation, and the everyday losing a piece of her. It’s the hardest thing I will have ever done in my life, to take care of my mom, my best friend, and watch her go from this physical life. I feel shattered and broken everyday still consumed by my grief, living with grief, that is my new normal. I thank you for being brave and honest in your grief. Your words have given me a little peace and solace today. I wish I had words, but the only ones I have os Thank you.
Wonderful. You captured it.
I thank you for putting to words so eloquently, the grief I felt watching my child pass away from a rare and incurable brain cancer called dipg We were told right after he was diagnosed, at six years old that there was no child who ever survived this cancer and that it would take away his most vital functions of walking talking chewing and swallowing all while he was fully aware. I watched him wither away for two years before he left the world. Thank you for putting in words every single feeling I felt Its three years later my life has just started to normalize. I barely can look at his picture without feeling like someone just shot me in the stomach. But I have picked up the pieces little by little because my family needs me to carry on and so I will keep putting one step in front of the other.
Wow. All I can say is to cry out to God. That’s the only way I got to the point that I can deal with life with some type of normalcy after the tragic accident of the father of my 3 adult children. My life changed on that dreadful day almost 3 years ago. I thought I was going crazy at times. But after crying out to God and allowing myself to grieve – going in and out of the different stages of grief, I am able to cope in life again. It did take me about 2 years to get to this point. I did write a book about this experience which really helped. I also created an online memorial in honor of him. That helped to. I will find other ways to incorporate his legacy into our lives. That’s what’s been helping me. I still have my moments but I don’t stay there. My Spiritual walk is what has sustained me. I will keep you in my prayers.
Congratulations on writing such heart felt words. You have company.
Life is not fair I tell my 2 living children. It’s not. But we have a choice each day.
My 17 year old, super wonderful son was killed in a car accident 7 years ago.
It changed all our lives…and others around us.
Don’t let your grief define you.
Rise up above it. Many have and will show you its possible.
Find God…he will carry you.
My deepest thoughts and prayers for you and your beautiful family.
…one day at a time.
God brought me to your site tonight. He always gives us what we need. I needed this. I lost my son 11/14/2020 after a life long struggle with mental illness. Thank you for sharing. I see now that I have been grieving for a long time. I, like you, are not alone. We will be Ok.
Thank you so much for sharing this. This message was for me and I needed to hear it.
Best wishes to you and your family.
I would comment more but cant stop crying..you have given voice to many of my thoughts..you touched me deeply and I thank you
Thank You. . . Grief for me is AM / PM conscious / unconscious: At work, at church, while cooking, while eating, while hanging out. Even when I laugh grief is right there. They say you will feel joy again but I cant see that — don’t even think I want it, if its not the joy I once knew and that makes me feel oh so guilty.
Beautifully put. I’ve been in this cage for nearly a year, and it’s as difficult now as it was when it happened. Only now, I don’t have the earlier numbness to buffer it.
I’m often jolted with the reality that my son is truly gone, and I want to fall down and kick and scream and throw a major tantrum. But, this inclination is immediately followed with the reality that it wouldn’t change anything. So, I move forward, while not really moving forward, always waiting for that morning when I’ll awaken, and true joy will be there to greet me.
Bless your heart.
i lost the man i love after 37 years together. i woke up to find him in our bathroom dead totally unexspected. the only family i had was him and my mom, who passed away in 2013. his daughter and husband r here for me but my best friend lives in germany and my other lives in new jersey and i am in ny. i have no one to visit or to visit me. i sm 64 and garry was 69 when he passed. we pretty much spent 24/7 together just hanging out at home. so hard having no one to wake up to or go to sleep with. i do alot of praying and crying. its been 5 months since he passed and i really just want God to bring me to heaven so i can be with him. no im not suicidal, just lonely and just the thought of feeling like this the rest if my life is terrifying…. i live in a studio apt and just watch tv all day… i keep feeling guilty if only i got to him faster maybe i could of saved him. and why did God take him, a man with children and grand children from a previous marrige and left me who has no family… it isnt right… he has a grandson with issues who is 12 yrs old and garry was everything to him he called him mcgyver he could fix everything with whatever was available and he misses him too, so why not leave him and just take me whose alone anyway? i know i will not get answers but the question and pain will be with me forever..i know theres nothing anyone can do to make it go away thats why i pray and beg God to take me in place of a sick child or a dying mom who has children. all i do is pray that God will answer my prayers… im sorry if this is the wrong place to write this but after reading ur story i felt like i know you and will keep u in my prayers…
So sorry for your loss. Since I’ve entered the grief club, I pray now for all who share this walk, and that includes you.
I know how you feel. My world turned black after losing my daughter. It is the worst feeling that could be conjured up in any nightmare. God I loved her and fought til the end to save her, but she is still gone. I don’t even want to be a part of this wretched earth any more without her. I’m so sorry for your pain. God bless you.
You have all my sympathy. I lost my husband a year ago yesterday and the sorrow and the longing are just as fresh. I don’t believe it ever goes away. Hopefully we learn to live with it. Your story breaks my heart.
Life as I had known it ended when my mom – my best friend & constant companion – started to show strange physical & mental signs of some sort of illness. For months and months we both begged and prayed to God for help and she only got worse. After emergency surgery for diverticulitis she changed overnight. I quit everything to take care of her at home – she was pretty much a vegetable – a beautiful soul trapped in her mind and body that inexplicably no longer worked. I knew she was there when she would show her frustration by chucking her sippy cup across the room or throwing herself on the floor. I spent 2 years grieving her loss while she was still alive and now, 3 years after her death, I still live in a desperate, daily battle to find the will to live. Your words made me feel almost normal and connected to something. Thank you.
I hear you, and in my mind’s eye I see you. Each of us, I think, belongs to our own unique chapter of the same club. I dreamt once of being imprisoned — such was my image of our club.
My loss was 35 years ago. Your writing brings tears today, and in bringing those tears it floods me with love, sadness, and gratitude for all I had then, and all I have now.
Thank you for sharing so genuinely what is in your heart and in your life. May sharing your gifts and your grief with others return to you in abundance comfort, hope, strength.
Thank you so much for this message. Sending love. Xx
I reload your website everyday to see if you have written again. Your words speak to me in a way that’s comforting in my long journey of emotional pain and anxiety. My mother/best friend was diagnosed with progressive MS when I was 12 years old. I am now 29, but live with the constant fear of her losing more function. She is in a powerchair as her left side of her body is paralyzed. She also has chronic kidney disease, and has lost a kidney due to reoccurring stones every 2 years. With her last kidney not functioning well, I wake up everyday in fear that today will be the day she goes into kidney failure. I want to give her my kidney, but she doesn’t want to “burden” her children. I would trade lives with her if I could.
I am her daughter, best friend, caregiver and companion.
She is my mother, best friend, my strength and entire world.
I feel your pain. I feel your love for your husband and family. You are strong through your grief. Feel it fully, embrace it everyday and please continue writing your world… your words are helping so many.
Hi Alisha – You sent this message so long ago, but I just wanted to say thank you for it. I am so sorry for all you and your family have gone through and are still. Sending love your way. Xx