I wasn’t expecting the question. I paused the TV and thought a moment. It occurred to me that I haven’t told her much about my father. He died from cancer before she was born. The proximity of his death to my own cancer diagnosis made it even harder to talk about.
I told her about how he always laughed at his own jokes, that his belly laugh made his whole body bounce up and down. And if he was sitting, his feet stuck straight out in front of him for the duration of the laugh.
I told her about how he loved to play guitar and sing to us, and he made up the most ridiculous songs.
I told her how he was often considered the smartest person in whatever room he was in.
I told her how we used to tease him about being short, and how he would tell his friends I was 4’20” rather than an inch taller than him.
I told her how he embraced our interests, how he dove in head first to whatever we were doing. When we got into theater, he memorized Shakespeare right along side us. When we played soccer, he trained to become a linesman. After my brother married a woman from Russia, my dad learned to speak Russian. He was all in.
I told her how he loved sports, how when I went home for a visit in ’99 I found him in his ref uniform watching the US Women’s team trounce China in the World Cup. I watched him flash a yellow card at China on the TV.
I told her how he was one of the Palmer High School football team’s most loyal supporters. Long after all his kids had graduated high school, he was still the keeper of the Moose Gooser, a cannon fired each time the Palmer Moose scored. He even took that cannon to away games.
She asked me if her grandpa would have liked her. “Oh, my, yes,” I said. “He would have loved you. He would have enjoyed your wit and your laugh. He would have loved playing chess with you. He would have loved that you’re learning French and Russian. He would have marveled at the amazing young woman you are growing into.”
My dad cared deeply about a number of things, threw his energy into a lot of things, but I suspect that, out of everything, being a grandpa was his favorite.
My girl and I laughed and cried at the stories. She snuggled and held me tight. We both grieved his loss and the fact that they never met. But mostly, we experienced my Dad.
She wanted to know how he died, and I told her about how his friends came over with banjos and guitars and played the bluegrass music he loved so much. I told her about how they played “I’ll fly away,” and how that song was even more special at that moment.
I’ll fly away, oh glory I’ll fly away, in the morning when I die, hallelujah by and by I’ll fly away
Then when his friends said goodbye, he got tired and went to sleep with my mom and brother sitting by his side. In the morning, he flew away.
Sharing this moment was a gift for both my daughter and I. We haven’t talked a lot about death or grieving, and this opened the door for some deeper conversation. This process was healing for me too. I’d forgotten how it can feel good to talk about someone you lost.
My father has been gone for 14 years, but for a few moments last night, he was right there with us. I felt like, in a way, I got to introduce them to each other.
The grief of losing him is still there, but it’s different now. The time helps, the talking helps, too. The grief is something that I carry forward with me. It has helped shape me. I’ve grown since his death, and that grief was a part of the growth. I would be a different person without it.
That’s not something I would have been able to hear or contemplate shortly after his death, and please don’t say that to anyone in the early stages of their grief.
I shed many tears last night. I cried again after G went to bed. I do miss my dad, I miss the relationships we might have had. But the tears were bigger than sadness. There’s beauty in this story. I experienced a sense of awe when sharing this story with my daughter. It was moving, it was deep, it was the same kind of tears we experience when watching a masterful performance, or viewing great art, or hearing a story of profound kindness. It was healing and transcendent. I’m not done grieving my father, that’s not something you finish. But I’m no longer afraid of the grief. I’m making friends with it, and that starts with talking about my dad.
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.
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?
“Just breathe,” I thought, as I sat up all night, listening to the ragged breaths growling and gasping in and out of my feverish little girl. I had plenty of time to contemplate how the most intimate, profound, and intense moments of my life have centered around breath.
I was young when I learned that people could die in their sleep, about 5, I think. I would sneak out of bed in the middle of the night to do bed checks, making sure my family was safe and well. The snorers were easy. I could listen for my parents’ snoring from my bed. My grandfather snored, too, but not Grandma. I’d watch her low profile for signs of movement, but I had to be stealthy; she was a light sleeper, and still had mothers’ ears. I’d check on each of my brothers, as well, before I could let myself settle down, and go back to sleep.
When I got older, and couldn’t sleep, I’d sync my breathing with that of my parents’ snoring. It worked better than warm milk for sending me off to dreamland. Something about that snore meant “situation normal,” and the cadence was hypnotic and soothing.
Sometimes, I find myself in situations where I hold my breath. My large family stood around my brother’s bed in the ICU, each of us reaching out to touch him; a hand, a leg, I held him near his left elbow. The doctor turned off the life support, and I held my breath, hoping for a miracle. I held my breath for so long, but he was gone.
A few years later, in another ICU of another hospital, I held my breath as my mother was extubated after weeks on a ventilator. This time, it worked. It wasn’t easy, but she took a breath, and then another. Eventually, she made eye contact, and squeezed back with the hand I was holding. And soon, she was back to her old, talkative self.
I exhaled when my husband said, “I do.”
I held my breath through the frequent, and impossibly long pauses in my father’s breathing during his last weeks.
My breath gets away from me during a panic attack; I often hold my breath when I’m hopeful, and I use my breath to blow away eyelashes, and blow out candles to make a wish. Exercise, excitement, engagement, even lovemaking are all tied up in breath. Breath is life.
“Breathe,” my husband coaxed, as he counted through my contractions.
“Breathe,” I silently willed the air in and out of my newborn’s body.
“Breathe,” I commanded an empty room, wishing I could send my strength to my husband, who was in the midst of a medical crisis in Istanbul. “We can deal with anything else, as long as you keep breathing.”
I think of my newborn niece, just 3 weeks old, and she’s spent most of that time connected to machines that help her breathe, or breathe for her. Each time I pray for her to breathe, I imagine her mama has prayed a thousand times more. And she is improving, needing less and less assistance each day. Enough equipment has been removed now for her to cry – how beautiful is the sound of a baby’s cry? Especially after this.
Our breath is completely tied up in crying. And laughing.
I’ve experienced joy so overwhelming that I momentarily forgot to breathe. I’ve experienced pain so intense the entire world disappeared. There was nothing left but me, and the pain, and my breath. The slightest movement had to be orchestrated; rest on inhale, exert on exhale. Each breath is painful, yet each breath is progress.
Sometimes all we have left is our breath. Sometimes breath is all we need. One more breath, to take us to one more moment. Inhale. Exhale. Repeat. A slow, quiet meditation on now, until our strength returns, or a renewed hope, even if just to get through another day, and we’re able to slowly start incorporating the rest of the world back into our reality.
If the only thing left to do is breathe, then breathe.
As long as you have breath, you have this moment.
P.S. The little angel is feeling much better, and had more energy than me today. As usual.
There is a certain coziness to autumn. After the chaos of summer, it’s the time when we settle back into routine; we find a rhythm. It is the time of comfort food, of warm colors, and crisp breezes. It is the season of pumpkin pie.
Once upon a time, autumn was my favorite season, but all that changed a few years ago.
October – Breast Cancer Awareness month
In September of 2010, I looked forward to October with some enthusiasm. It was my first Breast Cancer Awareness month since my diagnosis 7 months earlier, and I didn’t know what to expect. I thought a month dedicated to people like me might be fun, and there were some amazing fundraising parties, but I was not prepared for the Pepto Bismol-colored tidal wave that engulfed me.
Now, when I think of fall, it’s with white knuckles. I’m either bracing for, enduring, or recovering from Breast Cancer Awareness month. In October, those of us with breast cancer don our pink boas, and work frantically to earn money for the legitimate organizations that are truly working for a cure, or helping people to live with cancer. Meanwhile, hucksters get rich off my misfortune by slapping a pink ribbon on a product, then bumping up the price by $5 to donate $1 to breast cancer charities. Everything is painted pink, even carcinogenic items. Well meaning friends pass around internet memes where they pretend to be pregnant, and this is supposed to somehow give hope, or something, to those women who lost their fertility to breast cancer. Everything is all about breast cancer awareness, as if breast cancer was some newly discovered affliction, and awareness could actually help you avoid it.
Yes, it’s true that there are things you can do to reduce your odds. But as of today, there is no guaranteed prevention, and there is no cure.
This morning, my YSC family lost another angel. This was the third loss for us in as many weeks. Rachel was interviewed for the same CNN Heroes story as me last year – the one where we honored Debbie Cantwell, and the Pink Daisy Project. In this clip, you can hear her voice, you can see the sparkle of her big smile, as eye catching as her orange bandanna.
We are warm blooded women, with hopes and dreams and responsibilities and heartaches. We are mothers, daughters, sisters, friends, lovers. We are individuals.
We are not mascots.
We are more than statistics.
Over the coming month we will be lumped together and presented to you as a barrage of numbers. 1 in 3 get cancer in their lifetime. 1 in 8 will get breast cancer. But I want you to see the faces behind the numbers. And I want you to pay attention to what these campaigns are really fighting for. Be wary of campaigns that are just for breast cancer awareness.
My friends are dying, and it’s not for lack of awareness.
I am aware of breast cancer, and I was for decades before I was diagnosed with locally advanced breast cancer.
You, no doubt, are very much aware of breast cancer as well.
Awareness will not prevent breast cancer, and while it can sometimes improve projected outcomes, early detection and treatment does not guarantee that the cancer will not return.
We don’t need more awareness. What we need is a cure.
For all the frustration that surrounds Breast Cancer Awareness Month, there are some wonderful organizations who are doing laudable work in the breast cancer field, and these organizations depend on the funds raised in October for the following year’s budget.
Pay attention to what a breast cancer charity is fighting for. Are they raising money for awareness, or a cure? If they’re working towards a cure, how much of their research money are they putting towards the stage of breast cancer that is actually deadly, metastatic breast cancer? There are also a number of much needed breast cancer charities that do not focus on research at all, but their services are critical to the lives and well-being of women living with breast cancer.
Just to cut through the crap a bit, I’m going to list a few organizations below that do an excellent job of serving the needs of women with breast cancer. This is by no means an exhaustive list.
The Young Survival Coalition: YSC helps young women live with cancer, to connect with others with similar experiences, and to not feel so alone. I credit YSC with helping me keep my sanity while going through treatment.
The Pink Daisy Project helps young women with breast cancer to deal with the practical aspects of life while they are going through treatment. This is the organization highlighted in the CNN clip above, and they help young women who can’t wait for a cure. PDP hired someone to come clean my home while I was going through chemo and to sick to clean it myself. They sent me gift cards to buy the necessities of life when I was counting change from the couch to buy diapers.
The National Breast Cancer Coalition is so serious about curing breast cancer, they set a deadline, 2020. Their approach is science oriented rather than political, and they are committed to this goal.
The Dr. Susan Love Research Foundation – this science oriented research organization is also working on some groundbreaking research towards the goal of ending breast cancer in our lifetime.
Living Beyond Breast Cancer – the goal of LBBC is to empower all women affected by breast cancer to live as long as possible with the best quality of life.
If you find yourself tempted to buy something you don’t really need – just because it’s pink and it’s October – why not send your $5 (or whatever amount) directly to the organization of your choice instead? That way it’s tax deductible, and you know for sure that all the money is going to the charity.
Help us find a cure for cancer. Help us make pink just another color. Help us take back October.
I like to joke that no one really knows what I look like without a camera in front of my face. I’m THAT girl at parties: the one who hides behind the camera, capturing moments more than participating. The one who rarely actually appears in photographs…
Put Mom in the Picture
When I was first diagnosed with cancer, this really bothered me. For the first time ever, it was REALLY important to me that I have photos of myself, and photos of myself with my husband and daughter.
I wanted my family to have them – not just in case I died, but also to mark who I am right now, because I’m evolving. My looks are changing daily as my hair grows back. My outlook is changing daily as well; each new day brings a new challenge, and something else at which to marvel.
I’m trying to teach myself photography, and in that process, I spend a lot of time studying the work of some of my favorite photographers. Each has their own unique and identifiable style. What I’m learning is that a picture doesn’t just tell you about the subject matter in the frame, it tells you a whole lot about the photographer. You can see moods, attitude, approach… you can see respect, affection, and love.
The photograph is a record of the world as I see it
That realization eased my mind a bit about my absence from the photographs. I understand now, that I am in all those photographs that I have taken.
The photograph is a record of the world as I see it. It’s an opportunity to look at life through my eyes, to see what I see.
My hope is that someday in the future – when my daughter is 13/16/18/whatever, and mad at me because I wouldn’t let her stay up late/take the car/have my credit card/whatever – that she will, every once in a while, glance at one of the millions of photos I’ve taken of her, and see that the person behind the camera loves her with everything she has to give.
I can see my attitudes in the photos I’ve taken. I can see the difference between the photos taken to simply to document a place, thing, or an occasion, and those that seek out the magic of the moment. Mood, attitude, and approach do make a difference.
The camera bag of my dreams
Long before I had a real DSLR camera, I had my eye on a camera bag. Not just any camera bag, a beautiful camera bag from Epiphanie Bags.
After I was finally able to get my good camera this summer (with some help from my mom – THANKS MOM!), I bookmarked my dream bag, and revisited regularly. But purchasing the bag was out of the question. The price was prohibitive.
Not to long ago, I even posted the link on Facebook with the words, “sigh… someday.”
A couple weeks later that bag appeared at my door.
But here’s the thing: I didn’t order it.
I don’t know who sent it to me. It was delivered by the UPS guy with no note attached.
I laughed, I cried, I jumped up and down and squealed, even scaring my baby a bit till I convinced her it was a happy dance. I am completely in awe of this bag, and the kind, anonymous, generosity that caused it to become mine.
A Sense of Gratitude and Magic
I tear up every time I look at the bag, I also stand a little taller with that beautiful braided strap over my shoulder. That kindness now travels with me everywhere. Each time I reach for my camera, I am reminded of this generosity, and as I look through my lens at the world, I do so with a sense of gratitude and magic, and I hope that will show in my photographs.
Thank you my friend, whoever you are. You have given me so much more than a gorgeous bag to cradle my camera. Bless you.
