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.
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.
“Why?”
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.
Right now, I’m sitting in the heat, with this hot computer on my lap, and every fan in the house aimed at me while I try to type with just my left hand. My right hand is out of commission and elevated on a pile of pillows.
This scenario is not conducive to getting much writing done – or to adequately being there for the 6-year-old. On days like this, I’m the yell-at-the-kid-from-the-couch mom, rather than the walk-across-the-room-and-address-the-situation-appropriately mom.
The heat doesn’t help with that either.
Nor does the pain.
What’s Going on with My Arm?
It’s recovering from my second bout of cellulitis this summer. Cellulitis is a skin infection that can be life threatening; it also puts me out of commission for a few days with a high fever, exhaustion, chills, and extreme bone and joint pain throughout my body, as well as the pain in my arm. It usually requires a run to the Emergency Room, and overnight or two at the hospital for IV meds.
The cellulitis is a complication of a complication of breast cancer. The cancer got into the lymph nodes, the lymph nodes were removed, I developed lymphedema, and ocassionally develop cellulitis infections from the lymphedema – a few of the many lasting gifts of cancer.
The cellulitis is an acute infection that can be treated with antibiotics; there is no cure for the lymphedema. But there are treatments that are helpful. I would be lost without my physical therapists, and their massages are crucial to helping maintain circulation. Additionally, they taught my husband some of the massage techniques so he can provide some help at home.
The most important tool I have staying ahead of the lymphedema are the various types of uncomfortable, but totally necessary, compression garments.
There are several different types of compression garments that I use, some for sleeping, some for exercise, some for when my arm swells despite my best efforts.
Each of these garments are made to measure, and quite expensive. They must be washed after each use (especially after exercise), so it is important to have alternates, one to wear while the other is in the wash. I can easily wear three different sleeves in a day when I am doing physical work, or in the summer when everything is hot and sweaty, and that doesn’t count the separate garment designed for sleeping.
Each garment is good only for about 6 months before the elastic starts to lose its integrity, and it can no longer compress the way it needs to, so that doubles the amount I need for the year. Then there are the night garments, also made to measure, and the additional wrapping equipment for the inevitable flare.
These sleeves are medically necessary, prescribed by a physician, can prevent life threatening illnesses, and usually not covered at all by insurance, or insufficiently covered. I’m lucky; my health coverage allows two sleeves and two gauntlets (for the hand) a year, plus one night compression garment every two years. It’s nowhere near enough, but it’s something.
For many people, these compression garments can mean the difference between their ability to hold down a job or not. They are that important. Covering the cost of this medically necessary garments can save insurers money by helping to prevent life-threatening and expensive treatments down the line.
There is currently a bill in congress with bipartisan support. I’d like to see if we can keep it alive all the way to the point where it becomes law and can save some lives. The Lymphedema Tratment Act is a federal bill that aims to improve insurance coverage for the medically necessary doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.
This video explains more about how the Lymphedema Treatment Act, and why it is necessary. I was particularly touched by the story of the little boy. Imagine needing these expensive garments, how quickly babies grow, and all the parents out there know about the inevitable blowouts. How many clean garments must she have needed for each day? That would be devastatingly expensive.
It has been almost exactly 5 years since my world was turned upside down with the words “It’s cancer.” In those years, there have been many things that sustained me: my family, my friends. I know I’ve written extensively about how my girls in YSC have held me up and helped me keep it together.
But another thing that helped me through this hell-ride of cancer survivorship is the voices of other bloggers with cancer. Through the magic of the interwebs, we were able to find each other, encourage each other, and be there for each other. These voices, I could recognize from just a couple sentences of their writing, but in many cases, I could easily pass on the sidewalk without recognition,
because we never met.
Last night, another one of those voices was silenced. Lisa Bonchek Adams died because of breast cancer.
It’s a little confusing for me. Despite all these deaths I’ve experienced over this handful of years, I still haven’t learned how to appropriately grieve, to mourn these women who, for a short while, traveled this same bumpy road with me. How do I mourn someone I only know through facebook exchanges, and blog comments?
But I’m making this about me. I’m furious and sad for children who were separated from their mother, for her husband, for her real-world loved ones, as well as all the lives she touched with her words.
But she will live on through all the lives she touched. She will live on through her words, her blog, so I will close this with a quote from Lisa:
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.”
To the mom who brings her child their own cup cake to a kid’s birthday party:
I know you get looks from the other parents, but I understand.
Food sensitivities are nothing to mess with.
I know you stayed up late working on that cupcake. You made it extra pretty.
You brought it, not because you were trying to make your child feel excluded, but just the opposite, you wanted her to be a part of this party, and you wanted her to have a treat, just like all the other kids. But you had to make it safe for her.
It’s not easy to see your kid on the outside, and I promise you, I will not take your kid’s special diet lightly.
To the mom who’s wondering when she will start to feel like a grownup and have all the answers:
I’m sorry, but we only have all the answers about how other people should parent their kids.
The moments of feeling like a grownup are rare, but most of the time you have the bills, the responsibilities, the mouths to feed, the guilt about your own shortcomings, and conflicting advice from all the usual suspects, but not so much with the answers.
You feel like you haven’t quite arrived at being a grownup, until one day you wake up and realize you’re old.
Of course, feeling old is no guarantee you’ll have the answers. Same old questions, new arthritis.
To the mom of the toddler throwing a tantrum in the middle of the grocery store:
I’m sorry I was staring. I promise I wasn’t judging you; I’ve been there, and I was reliving it. The world is full of people who think the wailing and kicking are because the parents always cave, but I know that that little fit was because you didn’t cave.
Or maybe it was just because the store was out of Spiderman toothbrushes and the Incredible Hulk just wouldn’t do.
I’ve encountered so many people who believe children should be seen and not heard, and for that matter almost never seen except for when they’re being perfect and adorable. They would never admit they believe this, but they give themselves away… “why don’t they just take the kids home when they fuss?” people wonder.
But I know.
I know you and your children would starve if you took the kids home every time they threw a fit.
To the mom who is tired:
The mom who will go to bed soon, but first she has to make sure the clothes make it from the washer to the dryer before they sour, load the dishwasher, and get the kid up for a midnight potty so she doesn’t wet the bed…
I know you’ve been told before that you need to take care of yourself first, so you have the strength to take care of the kids.
I also know you’re just going to keep doing what you feel like you need to do.
I hope, sometimes, you get the rest you need.
The kids will grow, and soon they’ll be able to pour their own bowl of Cheerios. They’ll destroy the kitchen in the process, but at least you’ll get to sleep in for 20 minutes or so.
To the mom who is living with cancer or another life threatening or chronic condition:
I’m right there with you.
I know what it’s like to wonder how much time you have with your kids.
I’ve listened to my baby cry, unable to pick her up and waiting for someone to come bring her to me, feeling helpless and maybe a bit useless.
I’ve had those dreams that ended with someone else raising my child.
I’ve wondered if I was enough.
I’ve wondered if I could hang on long enough that she would be old enough to have memories of me. I’ve wondered if it would be easier for her if I didn’t.
I worried that I was letting her watch too much TV, but let me tell you something, TV is awesome. Besides, SuperWhy taught my daughter how to read.
Now I worry about my relationship with my own patchwork body, and how I can help my daughter develop a healthy body image when I still feel like my body betrayed me. My husband and I joke about my million dollar body, but I still miss those missing parts, I’m still anticipating the next body part failure.
To the mom who apologizes to her kid after losing it:
Thank you for showing your child that adults make mistakes too, that making mistakes and learning from them is part of being human.
Thank you for teaching your child that what you do after a mistake is often as important, if not more important than the mistake itself.
Thank you for modeling that behavior. It’s so awesome for kids to have a real live example, so they know what a meaningful apology is supposed to look like.
To the mom who is lonely:
I’m lonely too.
We’ve got the kids, but there’s only so far I can follow a conversation about My Little Pony or Minecraft before I really need to talk to another adult, and my husband doesn’t get home till late.
How do you connect with the parents of the other kids at the playground? Even when your kids hit it off and you have a nice conversation, there’s that awkward moment where you work up the nerve to ask about a playdate.
Sometimes you’re just not able to work up the nerve at all, but when you do, It feels like you’re asking the mom out on a date. You give her your number and wonder, will she call?
And they don’t always call.
Sometimes you meet up and it’s awesome, up until it’s time to go home and then your kid is the one who throws the epic tantrum that can be heard from 3 blocks away.
But every once in a while, you make a friend.
To all these moms, and to all the other moms out there:
Let’s stick together, lets have each other’s backs. Raising humans is hard, it’s exhausting, and it’s often a thankless job so let me just take this moment to say thank you.
I hear you.
I see you.
Thank you.
Listen to Your Mother
I originally presented this piece at the inaugural Listen to Your Mother show in Seattle, 2015.
Today’s guest contributor is Sonya Davis. Sonya writes about her experience as a breast cancer survivor, and as the child of a breast cancer survivor.
Photos courtesy of Sonya Davis.
In some ways I think I’m lucky. I have a strong family history of cancer – on both sides of my family. I am the youngest person in my family to be diagnosed and the first of my generation of cousins, but the idea of cancer is not new to my family. My own mother was told that with her personal history, my sister and I had a 50/50 chance of getting cancer at some point in our life. I’m hoping that I took the bullett for my sister. While the diagnosis was shocking and disturbing, I can’t say it was surprising. And while the diagosis wasn”t surprising, there were some surprises I want to share.
Surprise 1 – The bills
I knew cancer was expensive, but I had no idea of the financial tail spin the bills would send me in to. It frustrates me to no end that I’m still making payments, 3 years after diagnosis. And I have fairly decent health insurance. I have no idea how people who don’t have insurance do it. After treatment, all you want to do is move on with your life, but that is pretty hard to do when you keep getting bills.
Surprise 2 – How much stronger I am now
Some tmes I look at things I do now and think “wow, i never would have done that 3 years ago”. The first time I realized this was the first time I danced in public without being under the influence of large quantities of alchol. And you know what? It feels great. I love the confidence and strength I now see in myself. I also love that I no longer sweat the small stuff like I used to.
Surprise 3 – the doctor visits never seem to end
Every time I turn around, it seems like I have another doctor appointment. It’s all for little stuff that always seems to turn out fine, but you never know. And then there is the question “Which doctor do I ask?” Fortunatly, both my oncologist and my primary care doctor always take me seriously, but I am getting tired of always having a question.
Three years out from diagnosis, this is where I’m at. This is me and all I can do is keep myself moving forward.
A child’s perspective of a parent’s cancer
One common theme I often hear from parents who have been diagnosed with cancer is they are worried about their kids. I don’t have kids, am not an expert on kids, but do have one thing in common with the kids – my mom was diagnosed with cancer when I was still a kid. And I always have one thing I want to share with parents: I’m ok. And your kids will be too.
Honestly, I don’t remember much about my mom’s cancer experience. I don’t know if it is because I shut it out or because I was wrapped up in my teenage self, like any normal 16-year-old. Probably the latter. I do know I was upset. I remember having to leave the house because my sister was playing “the wind beneath my wings” on the piano and I couldn’t listen to it. I remember my aunt pulling out her prosthesis to show me what it looked like. I remember when and why she decided not to do chemo. It’s part of my history, but it did not define who I am.
Were it not for my mom’s history, I probably wouldn’t have caught my own cancer when I did. I was not afraid I’d get cancer, but I was aware I could. Cancer did not occupy my thoughts the way it does now – I knew enough to be aware it could happen, but it was an after thought.
I very much hope that you ever have to hear that your child has cancer, but if you do know that your child’s journey will be different than yours, but you can provide support like no other. My mom never expects me to just move on. She understands the day to day fears. She never makes me feel like i’m over reacting. She encourages me to take my fears seriously and get things checked out. She’s my biggest support. She’s my hero.
