She wanted to talk to me about cancer, but she hesitated. She was worried because she thought her cancer wasn’t as bad as mine. When I finally realized the reason for the hesitation, for the trepidation in her voice, my heart dropped.
She had just apologized because she thought her cancer wasn’t bad enough. No one should ever have to do that.
It hurts to think I might have given that impression, but I know it’s not just me. This issue of comparison is part of our culture. We compare cars, houses, job titles, the behavior of our kids, and even our pain.
Comparing pain is insidious
We are measured against others throughout our lives (what is a Bell curve, anyway?), but at the same time we are cautioned against comparing wealth and power, and warned against envy and conceit. But when it comes to comparing pain, it’s actively endorsed. ‘Don’t feel bad, there are children in [insert third world nation that it is currently en vogue to pity] who have it so much worse than you.’ Comparing pain is deeply ingrained in our culture.
Don’t feel bad, we say.
Here’s another way to look at that: In the act of trying to console someone that way, we’re actually invalidating their pain. We’re attaching shame to the pain, and yes, that makes everything worse. No one should feel shame for experiencing pain. I don’t care if they just stubbed their toe, that shit hurts and comparing it to a brain tumor doesn’t make it hurt less.
Pity is not compassion
Also, a point about pity. Pity is condescending and dehumanizing, whether it is directed at someone on the other side of the world, or your next door neighbor. It others, creating or deepening the “us and them” perspective, and moving us further away from compassion and connection.
A few years ago, Brené Brown said that “Comparative suffering corrodes compassion and connection. It makes us judgmental and critical. Belittling our own suffering doesn’t elevate the suffering of others. It throws us into a ‘race for the bottom.’ It disconnects us from the truth that we are all inextricably connected – we all have strength and we all have struggle. We all need and we all give.“
I’ve seen the truth of that.
Your pain is valid
Whatever it is, your pain is valid. It is worthy of your attention. It is worthy of acknowledgement. It doesn’t matter if someone else has a different pain, or something some might consider to be a worse pain. You have pain. Deluding yourself, or trying to make excuses or rationalizing why you shouldn’t be experiencing pain won’t make it go away.
I heard a quote some years ago that has stuck with me over time. I have no idea who said it, and since I can’t remember the exact wording, I’m having trouble hunting down the source, but here it is in essence: telling yourself your pain is invalid because someone had it worse than you is the same thing as telling yourself your joy is invalid because someone had it better than you.
Avoiding toxic positivity
There is a cult of positivity in our culture as well – Suck it up. Paste on a smile. Hang in there. Fake it till you make it – And there are times and places for this approach. But positivity that is dismissive and forces delusion is toxic. We all need a place, a person, something somewhere that will allow us to let down our guard and get real.
Glennon Doyle once wrote, “You know, what strikes me is how desperately we all need to know that we are seen and heard. We don’t need our lives to be different, or easier, we just need someone to see the pain. To know what we’ve faced and overcome. To say: Yes. I see this. This is real. We don’t need a magician to take it all away – we just need a witness.”
When someone opens their heart, chances are they don’t need someone to come rushing in to fix everything, they don’t need delusions, they need a compassionate ear, they need a chance to release their story.
Some things have to be released before we can be free of them, or at least get up and move forward. Sometimes we have to acknowledge we have a problem before we can get help. Sometimes we just need permission to feel our own pain without shame.
Why is it so easy to say the wrong thing when someone is grieving? Death is universal. It happens everywhere, and eventually, to everyone. Why are we not taught, from childhood, how to respond when someone experiences a loss? It’s such a challenge, and for the most part, we really don’t know how to deal with our own losses, or anyone else’s,
Whether the loss is the death of a loved one, the end of a relationship, the end of a job, a devastating diagnosis, or even an new understanding that renders a lifelong worldview no longer tenable, interacting with someone grieving fills so many of us with an awkward case of foot-in-mouth disease.
Why it’s easy to unintentionally say something hurtful
We can’t stand to see anyone sad. We especially can’t stand to see anyone express sadness; we’d even prefer anger. We feel like we have to make it go away. So what do we do? We do what we were taught to do. We tell them to cheer up. In essence, we give them reasons why they they are having the wrong emotion.
Their loved one is in a “better place”
This is God’s will
You have other children
He lived a good life
You hated that job anyway
You’re better off without him
At least now you know
And then we are shocked, offended, when they don’t respond to our perfectly logical offering with gratitude. Sometimes, they even get mad.
I’ve been on both sides of that situation.
I’ve offered up the obvious, yet useless, reasons why someone should get un-sad – why they should be thankful for this tragedy they’ve experienced. I’ve had those things said to me as well. That experience opened my eyes a bit.
My cancer treatment left me with some chronic pain issues. For the most part, I try to quietly muddle through, but sometimes it really gets to me. When people offer up comments like “it beats the alternative,” it doesn’t feel encouraging or uplifting. Yes, I am glad I didn’t die from cancer, but that statement feels like I’m being shamed for being uncomfortable with pain. In the long run, it’s not a great way to make me feel better.
So how do you know which statements will be hurtful?
There’s really no way to give you an exhaustive list of statements to avoid. But there are questions you can ask yourself that might help you sidestep some of the most egregious faux pas.
1. Am I trying to get them to change their emotion?
If your statement is in any way trying to cheer someone up or suggest they should have a different attitude about the situation, you probably won’t have the desired effect.
When you try to convince someone to cheer up (change their emotion), all kinds of responses can happen, but there are three that I see come up frequently:
They get visibly angry at you
They pretend what you said was kind and made them feel better, while they internalize anger and sadness
They feel ashamed for having had the wrong emotion, try to paste on a fake happy face, but internalize the shame along with their sadness
Those are probably not the end results you were looking for. And it might even be a shock that encouraging someone to cheer up when they are sad could have that kind of result.
We want people to be happy, especially the people we care about. But sadness is a real and valid emotion. It’s not wrong to be sad. It’s completely natural, normal, and even healthy to experience sadness. It’s important to allow others to feel whatever emotion they feel without judgment, shame, or pressure to change.
This is very similar to the situation above, and often the two are combined. We minimize the situation, and follow with a reason why they shouldn’t be having this emotion.
I’m sorry to admit that I’ve minimized people’s pain that way, as well. I’ve called people dramatic. I’ve rolled my eyes. It’s common. We forget that grief can be completely overwhelming. We don’t realize that while a situation looks straightforward to the those on the outside who don’t have the details, dealing with the situation causing the grief can be complex, confusing, exhausting, and devastating.
Don’t minimize their pain by comparing it to your pain or someone else’s. I think, to some extent, our brains are wired to categorize and compare, but comparing pain does more harm than good. For each of us, the pain, the grief we experience, is complex. There is no comparing loss because it can’t be measured. Only felt.
One way that we minimize, without realizing it, is commenting on appearance. Saying thing’s like “you don’t look sick,” or “you don’t look tired,” triggers a defensive response even if you were trying pay a compliment. If you do want to pay a compliment, get specific. Saying something like, “That sweater really brings out your eyes” leaves illness out of it altogether.
Don’t say, “At least….” Many attempts at helpful dialog start with a thought like “at least.” The phrase is literally minimizing.
If you catch yourself saying something along the lines of… “at least,” that’s a good opportunity to stop, apologize if you went farther than that, and then offer up an entirely unrelated topic to discuss. Doughnuts, pizza, cookies, coffee are often well loved topics, and if all else fails, discussing the weather is better than minimizing grief.
3. Am I making this about me?
One of the things that we are taught is to find common ground. When we are trying think of something to say to someone who is grieving a loss we can’t fully relate to, we try to come up with some similarity to compare it to and offer that up in the conversation. This rarely works.
Imagine this example: You’ve been diagnosed with breast cancer. You feel sad and scared about it, and someone says, “Oh yeah, my aunt died from that. It was awful.”
Well, that didn’t help any. There’s a time and place to talk about your dear departed aunt, but this isn’t it.
If you’re telling me all about how my grief makes you feel, or worse, how my grief is inconvenient to you… Well, why are you even telling me that? What are you trying to get out of that, because I don’t even know.
4. Am I offering unsolicited advice?
Just don’t. period.
The Silent Treatment
Another problem that people encounter with their grief is that people don’t talk to them, or even avoid them altogether. Avoiding someone to keep from saying something hurtful does not prevent you from hurting them.
We feel your absence.
We feel the silence.
Grief can be so lonely.
People often turn and run when something terrible happens. It’s quite common.
I’m awkward girl when it comes to small talk, so I completely understand the difficulty with conversations when you just don’t know what to say. And I’m sure I just compounded that frustration by mentioning how you can hurt others without even realizing it.
So how do we find the middle ground? How do we find things to talk about without saying the hurtful things?
Here’s what to say
Being direct can be surprisingly effective. If you’re feeling awkward, it’s okay to say that you’re feeling awkward. If you have no experience talking about grief or death or whatever this situation is, it’s okay to say, “I have no experience with this,” and then move on to a question.
Ask open ended questions
Do you want to talk about her?
What was his name?
What was he like?
How did you meet?
How are you spending your time?
Do you want to talk about something else entirely?
An open ended question allows the other person to have some input in steering the conversation. Focus more on listening than talking. The open ended questions are just to get the conversation started or keep it moving.
Nice things people have said to me
“I don’t know what to say yet, but I just wanted to give you a big hug”
Telling funny and awesome stories about my dad after he died
Asked me what my favorite flavor of ice cream was and had it delivered
Offered to help with childcare while I went to doctor appointments
Came over and washed my dishes while describing in detail the comedy show she went to the previous night
Pay attention to how they are responding to you. If they seem to want to engage in the conversation then you can keep it going. But don’t wear people out with conversation they’re not up for. Watch body language, and make sure you’re not adding to their fatigue. Grief is exhausting.
A Sweet Silence
Sometimes we don’t feel up for a conversation, but we don’t want to be alone. Keep that possibility in mind as well. Maybe you can have a reading party where you each read your own books, just being in the same room. Maybe you could go for a walk at the park. Maybe you watch a movie together – that’s a great option because it provides entertainment, and gives an easy conversation topic when the movie is done.
Silence isn’t always bad. Sometimes it’s just what we need.
How do you know? You could start by asking.
Did anyone say the wrong thing while you were grieving or going through a stressful time in life? What kinds of comments would you prefer? What was something kind and helpful someone said to you?
Each time I lose a friend to cancer, this question comes up. When Gwen asked this of me after our friend Carrie died, the question took on heavy new layers of texture. You see, Gwen understood that she was probably next.
I stammered around, trying to come up with an answer, but I had nothing.
Gwen died a year ago.
I still haven’t figured out an answer to her question.
I wanted to answer her question. I intended to. The question never left my mind, and I’ve been stewing over it since Carrie’s memorial service. I’ve been carrying around these deep thoughts and this half written post for a year and a half – reworking sentences and angles as I go about my day, but I still haven’t fully answered the question for myself, making it difficult to coherently discuss.
How do you keep going when your friends keep dying?
In truth, I was scared. I was afraid of examining those feelings to closely, of allowing myself to feel the pain deeply enough to understand it. But mostly, I was afraid of imperfection, of falling short and saying something that was less than what the situation, and Gwen, deserved.
It’s not lost on me that Gwen’s motto was “Be Brave.”
Then last month, over the course of three days, two more of my friends died from breast cancer. I had to dive back in, and ponder, again, the imponderable.
This is my reality.
In each of the six years since my own breast cancer diagnosis, I have lost several friends to cancer. I refuse to keep a tally, so I’m not sure of the exact number, although I could come up with it fairly easily if I decided to do so. I don’t want to reduce them to numbers; I don’t want to carry a number in my head that just keeps having to be updated. I remember smiles, the sound of their laughter. I remember their stories, their quirks, and I remember the way each of them enriched my life.
The interesting part of this is that for each death, the grief is different – because my relationships and my memories with each of these women were different. There is no pattern, no rhythm to sink into to ease my way through the recurring process of grieving my friends. I have to figure it out all over again each time. Even in this past month, my experience of grieving these two women who died so close to the same time has been conflicting. I find myself in a denial stage for one, and at rage for the other, or some other combination that will not allow my mind a moment’s rest.
How do you do it? How do you keep it together, and keep on keeping on, and keep showing up when your friends are dying?
The fact that she asked this question of me says a lot about Gwen. Here she was, knowing she was descending into the valley with no way to stop it, and her interest was in how it all impacts me.
I guess the first answer is that I don’t always keep it together. I fall apart all the time. And then I pick up the pieces, with the help of my friends, and try to figure out a way forward.
I don’t always keep on keeping on, either. Sometimes, I get stuck. I get stuck in the sadness, the futility, the unfairness. Sometimes, I just check out for a while. But again, my friends help me find my feet and get going.
I don’t show up for them as much as I show up because of them. I show up because I need my friends.
The other question I get all the time is, “Why?” Why do you surround yourself with women whom you know will die?
This question leaves me sputtering every time.
Everyone dies. Eventually.
These are women who understand me, who know better than anyone what I’m going through with the long-term physical and emotional effects of cancer and it’s treatment.
I do volunteer with an organization that supports young women with breast cancer, the Young Survival Coalition, but I’m there anyway. People may assume there’s some kind of nobility in this kind of work, but I show up because that’s where my friends are. That’s where I go to be understood – to participate in sharing this heavy load together.
I wanted to tell Gwen it’s not a burden. It sounds like a burden, and when I let it get to me, sometimes it feels like a burden, but really, it’s not.
It’s an honor.
It’s painful, and sometimes feels unbearably so, and dammit, it’s so unfair!
It’s a privilege to be a part of their lives, even when such a short time is left, and to have them be a part of my life – a part that stays with me forever.
How do I explain what this feels like?
I thought of comparing it to a horror film, unfolding unbearably slow, as your friends get picked off one by one. But there are no basements we shouldn’t have entered, no one went off by themselves. While myths abound regarding early detection saving lives (Gwen was diagnosed at stage 1), or ways cancer can be prevented or cured, the truth is that not one of us deserved this. Horror films have rules, and cancer doesn’t play by rules. You can do everything right, and still die.
I thought of the frequently referenced battles, and the band of brothers-in-arms. But battles suggest both sides are armed, that there is some give and take. There are rules in warfare as well – oft ignored perhaps, but they exist. A band of brothers in a battle can cover each other, there are opportunities for daring rescues. No such opportunities exist in cancer – Believe me, if we could do that, these amazing women would have saved every one of us by now.
Perhaps it could be explained better with a reference to the Golden Girls.
I get by with a little help from my friends
My grandmother lived 99 years, but the last two decades were arguably the happiest of her life, where her interactions with her close circle of friends were daily; they all lived in the same building. Grandma also experienced this phenomenon, where her dearest friends were dying at an accelerated rate. That’s to be expected in your nineties, but it doesn’t make it easy. It doesn’t mitigate the pain.
I watched this play out in her life for years before my own cancer diagnosis. The friend who didn’t show up one day, and the worried phone calls. A friend’s failing health, and the helpless feeling of not being able to make it better. When they go away towards the end, and the family takes over, restricting access. The death watch, when you know its down to days and hours, praying for them to hang on a little longer, and at the same time praying for them to let go. Simultaneously feeling relief and utter heartbreak when they pass. Wondering if you’ll be able to participate in the memorial service, or if you’ll even be invited? What will you say? How will you find the words?
For a while there, I had my own real life Golden Girls as I spent time with my grandmother and her friends. I watched them discuss food, politics, grandkids, art, and that cute new guy who just moved in on the 16th floor. I think about Grandma and her friends often as my experiences at times mirror what I watched her go through. The pain, yes, but mostly the amazing, fierce friendships. I marveled at her circle of friends, forged in fire, and sealed with brandy over a shared crossword puzzle.
They mourned their losses together – and laughed while remembering, together. There’s something to be said for the collective memory. To recall a friend with someone else magnifies the experience. You remember more. You share details. You learn more about that person and so your memory becomes richer, more robust. They live on through our memories.
There is a cliche that misery loves company, but like all cliches, it’s born of a kernel of truth. We grieve better together. The process is more efficient, more healing, when we do it in the company of others who share our pain.
Self-Care is crucial
There’s a phrase we use within our circle of cancer survivors; we say, “I’m going to Target.” It’s a way of letting each other know that we’re ok, but we’ve got to step back for a while, indulge in a little denial, and pretend like our only problems are regular things like tantrums in the candy aisle, running out of laundry detergent, and finding cool looking school clothes that don’t aggressively sexualize our pre-pubescent kids.
“Going to Target,” is a timeout. It’s artificial, because the reality of life with or after cancer is that it never really leaves us. There is the very real and looming threat of recurrence or progression. There are all the long term side effects of treatment and encompass a wide array of issues including heart damage, nerve damage, metabolic and digestive issues, and teams of specialists who don’t always agree on the best course for treating our competing complications. It’s a good problem to have, I suppose, considering it means I’m not dead yet. Cue the survivor guilt.
So how do we get by when our friends are dying?
The answer to your question, Gwen, is that we hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
It’s not easy. It’s hard. It’s painful. It requires courage. And stamina.
It’s also achingly beautiful. And full of laughter.
I heard Carrie’s voice, saying, “You should do that,” pushing us forward as Katie and I built our journaling class. I hear her all the time, as I finally set to work making dreams I’ve held my whole life into a reality.
I hear Gwen saying, “Be brave,” even as I write this post. She taught me so much about courage. And I need courage by the bucketful. This kind of writing is terrifying.
I hear Michelle’s riotous laugh, and I remember to let loose. Life is meant to be enjoyed. Right up to the last minute.
Too many of my friends are dead, but they’re still with me. They still influence me, and because of that, they influence the world I live in as I move forward, carrying their light with me.
So how do you go on living when your friends are dying? You love harder, you embrace your friends, you remember together. And sometimes, you go to Target.
“People give you 3 months to mourn, and a year to have cancer, then they expect you to get back to normal.”
I don’t know where I heard this quote first, but I’ve experienced the truth of the statement both in terms of mourning and cancer recovery.
It’s not that I’m faced with the reality of that quote on a daily basis, but it does remind me that while the lingering effects of my cancer still impact every single day of my life, many around me have moved on; my cancer is old news and in their minds, overplayed.
I understand this perspective; I’ve been there myself. I know people whom I’ve avoided because every conversation, for years, involved detailed information about the wellbeing of their bladder or their gout.
It does get old, and frankly, there are some details I just don’t need to know.
I do try to avoid being that person who unloads in that manner, but the fact that cancer is still a part of my present life is depressing to others, as well. People want good news. Something better than “I was able to hold on to my pen long enough to write a whole page,” which is a big deal to me as a writer and avid journal keeper whose dominant arm was significantly impacted by cancer treatment, but not so meaningful to everyone else.
I don’t talk about those things anymore. I swallow my words, and put on a mask, and when people ask how I’m doing, I just say “awesome” and leave it at that.
This is where a group like the Young Survival Coalition, and a retreat like Harmony Hill, are so critical to the wellbeing of a cancer survivor like me. It’s not just a retreat away from the stresses of everyday life, it’s a coming together with other women with similar experiences and battle scars. A three day weekend where we can compare notes, treatments, ongoing issues, what works for me, what doesn’t, and how we’re coping with all of it is not just healing, it’s normalizing – in a good way.
We’re not alone in this experience. We can share without the fear of being perceived as complaining. We can make fun of our condition and laugh at cancer in a way that often makes others uncomfortable. It’s summer camp crossed with a slumber party, plus booze and minus the curfew. It’s yoga, meditation, labyrinth walking, beach combing, flower smelling, and lawn napping, followed by good food, good conversation, and tearing the best parts out of magazines for each of us to make something uniquely our own.
And it’s research. I’m looking forward to another surgery in the next few months. This one will involve 12 hours under the knife – that’s a long time – plus six weeks of recovery. It’s not something to take lightly. But I spent a weekend with 23 other cancer survivors, most of whom have already endured this surgery. I got better information on what to expect and how to prepare from these women who already went through it than from the doctor who has performed this procedure hundreds of times. And that’s to be expected. As much as these doctors know about performing this procedure, they haven’t experienced it.
I’m so thankful I have this group of survivors in my life. That we got to get away together, away from all the other stresses and demands of life for a couple days seems like a miracle. I know it took a lot of work to pull it together, but it was so worth it. I love you girls.
We spent the evening walking down Bourbon Street in the French Quarter of New Orleans, The Big Easy. It’s Friday night, and I’m told much tamer than the partying a few nights earlier on Fat Tuesday.
My friends and I stand at the corner waiting for the light to change so we can cross the street, while revelers around us brazenly jaywalk – behavior that seems foreign to this group of girls from Seattle.
We stop for drinks at Howl At the Moon, and when they are delivered in 36 ounce plastic cups, the server explains that the 3 for one special means everyone is automatically upgraded to a triple, and the cups are plastic so we can take them out in the street.
We look outside: Everyone does carry their drinks with them in the street.
Don’t worry, we adjusted. It wasn’t long before we were jaywalking while carrying open containers. Talk about multitasking.
Beads hang from balconies, street lights, stop signs, trees, public art, and anything else that will sit still long enough to be draped with the twinkling strands in all colors of bling.
A sprinkling of rain and a sturdy breeze lends more sparkle and movement to a street that is already teeming with life; humans, pigeons, palm trees, flowers, moss, mules, dogs can all be seen in a single glance.
The next block we walk through is closed to traffic, and pedestrians fill the area between the buildings as they laugh, dance, and wander amongst the street performers and live music wafting from the insides of bars and restaurants, music so rich and textured it seems to hold a physical presence in the space as well.
Bright lights and dark corners, high contrast colors, bricks and stucco, trolleys and mule drawn carriages, trees and bling,
and ornate balconies populated with blow up dolls
conspire to create an environment that is, to me, both fun and foreign.
In the cold, dark, fear of 3 a.m., when the cancer patient is most alone, I found ToddlerPlanet, a blog written by cancer fighting princess warrior, awesome mommy, and astrophysicist, Susan Niebur (also known as @whymommy).
Days after my diagnosis, before I learned to reign in my imagination and to view Dr.Google for what it is, I found Susan’s blog. I read for hours: post after post, page after page. It seemed she was speaking directly to me, addressing my personal concerns about life, death, love, cancer, and most important to me at that moment, the well being of my child. No sensationalism, just an honest look at life and parenting as impacted by cancer.
It would be difficult and frustrating, and at times, extremely painful, she seemed to say, but my days would still be full of love and joy, and I can still be an awesome mom, and my child can still be happy. I read those pages through tears; I was so relieved and hopeful. In the two years since then, we formed an internet friendship, tweeting and commenting on each other’s blog posts. The internet has made possible friendships between people who have never met.
Who will never meet.
Today I read her blog again through tears. Susan passed away today. She touched so many lives, her husband and little boys, her friends and family, the science community, the blogging community, the cancer and health advocacy community… and me, a girl at a computer Seattle, whose life was blessed by knowing her, even though we never met.
Is it just me, or does the moon seem to be a bit bigger and brighter tonight? I’m going to think of it as Susan’s moon.
Thank you, Susan, for the love and hope and strength you shared with all of us. Godspeed.