How to help someone who is grieving, in 5 easy steps, from an Absolute Expert on the Subject

I know I haven’t written a lot recently. I’ve been doing so much for Zoé4life, I haven’t had time. We’re working non stop to fund research. And we’ve also put in place a system by which families can apply to us for financial support through the social workers who are at the hospital. The first time a request for help came through Natalie and I both jumped for joy and simultaneously felt like crying. It felt so good to be able to help other people who are actually in the cancer-fight, a battle we are both all too familiar with. But we also acutely remembered the pain and shock of a family hearing the words “your child has cancer”, and knew how limited our help really was.

Still, it felt good to do something.

Because sometimes, there is nothing you can do. And the powerlessness can be overwhelming.

Like when your close friend’s daughter dies.

What do you do? How do help with this?

Some people have actually asked me for advice on what they can do to support Natalie and Zoé’s family, or other friends who are grieving, deal with their loss. They are afraid to say the wrong thing, so they say nothing and assume I have some kind of magic technique.

So here goes. My list of Expert Advice. This is of course based on Actual Scientific Evidence. You will note that any time I capitalize words I am being ironic. Except at the beginning of sentences, and then I am being a Literacy Expert.

My rambling thoughts on the Obvious Clear Path to helping a person through intense grief.

Step 1. Make sure you talk a lot about the child, share memories and photos. Uh, no actually bad idea. Showing them photos you happen to have of their child is just going to make them sad. Revise that:

Step 1. Never, ever talk about the child, make sure you avoid all subjects that could bring up a memory, including: school, vacations, Christmas, any holiday, any other child in the world, any illness, toys, bedrooms, car seats, clothing, hair cuts, movies, tv shows, books, food, travel, any other person, kitchen tables, animals of any kind, toilets, grass, trees, clouds, stars, and the beach. In fact the only safe subject is the weather and then only if it’s raining. Hmm no I think Zoé thought rain was fun. Dammit, there is no safe subject.

So, avoiding the subject is useless and wrong. In fact the person wants to talk about their child. They need to talk about her. Not talking about their child would be like pretending they hadn’t existed, which would be the worst torture.

So Step 1. Make sure you talk about the child and make sure you don’t talk about the child. Good luck with that.

Step 2. When your friend is sad, cheer them up by reminding them of how great it was that their child existed, even if for too short a time. Uh, no. Wrong. That would be denying the fact that they have every right and reason to be sad.

Revised Step 2. When your friend is sad, distract them with talk of other subjects to get their mind off the child. Be careful to avoid all subjects from Step 1.
Ok that’s all wrong. Getting their mind off their child is an impossibility, it would be like telling someone to hold their breath and not think about breathing.

So, Step 2, Feel free to talk about and remind them of the wonderfulness of their child and accept their sad thoughts that are the result of the wonderfulness of their child.

Step 3. If they need to talk about the sad parts, the horrible parts, the injustice, the anger, the pain, encourage them to open up and share these feelings and acknowledge the unfairness.

But wait, are you not therefore encouraging them to stay in a negative place?

Revised Step 3. If they want to talk about all the bad stuff, remind them of the good times, and say things like, “Your child would want you to be happy”.

Nope, that’s not right. The fact is, everything about the situation sucks. They should be mad, sad, and resentful. I’m mad, sad and resentful.

Step 3. The horrible parts happened. There’s no way around it and there’s no distraction.

Step 4. If they have a happy day, a good day, are laughing or behaving otherwise normal, remind them that they are grieving and that their behavior is odd and probably they are crazy from grief and don’t really know how they feel.

Oh wow if I actually did that I would not live to see the sun set. 😉

Step 4. Ha! If they are happy, that means the grieving is over! We can all get back to normal now.

Uh nope. That’s just not how it works.

Step 4. Happy is happy. Every moment when the person is not feeling crushing pain is a gift. Don’t question it. Embrace it and enjoy it with them. And when it’s gone, trust that it will probably come back later. There is no normal way to grieve.

I guess it turns out there is no proper way to support a person through this incredible grief.

There’s no subject to talk about to take away the pain.

There’s no distraction.

There’s no going back to the way it was before.

There’s no normal.

And I am far, far, far from an Absolute Expert on the Subject. All I can say about that title is that when Natalie read it she might have laughed. Which is at least something.

So here is my ultimate Step 5.

Step 5: Just show up.

Show up scared, and angry, and sad, or worried, confused and desperate, or anxious, overwhelmed and frustrated. Show up happy and at peace, ready to have a wave of anger blow past you if it’s that kind of day. Show up serious and sad, only to be laughed at. Enjoy the gratitude and appreciation for your presence one moment but expect to be forgotten or ignored another time. It’s ok. There are no rules, just as there are no steps that show a clear path to take through a grieving process. There’s no perfect right thing to say, and there’s no reaction that means you did the right or wrong thing. It’s not about you.

Just.
Show.
Up.

 

Walking down the quiet hallway.

You never know how strong you are until being strong is the only choice you have...

You never know how strong you are until being strong is the only choice you have…

Sometimes, especially late in the evening like right now, the quiet of our home brings me back to the quiet of the hospital late at night. The haunting echo of my footsteps as I pace up and down the hallways, up and down, trying to walk away from the fear.

The nights when Elliot was in the ICU were the longest, there is no small cot for the parents in there, just a chair next to his bed and a curtain separating you from the next child. His epidural, we found out later, had been wrongly placed so he was in lots of pain, the nurses did their best with morphine injections and other painkillers. Martin and I knew right away we would not be leaving his side, not for one minute. We could not control the fact that he had cancer, but he would not wake up and be alone and in pain, that was one thing we could make sure of. So we divided the nights into shifts, each of us taking turns getting three hours of sleep in a small bedroom at a local student’s residence a block from the hospital and then coming in to replace the other.

These were some of the hardest nights. The hardest days too.  Exhaustion, anxiety, fear, achingly present all the time, all the time.

Some things went wrong. Because of the wrongly inserted epidural needle, Elliot had a neurological reaction to the lidocaine which was sent right up his nerves to his brain, he convulsed and his pupils dilated into different sizes. The doctors didn’t realize it was the epidural, so they told us it was probably a brain tumor and scheduled an emergency MRI. Did I mention these were some of the bad days?

Since the nurses felt the epidural wasn’t helping with pain management, they stopped using it. His eyes went back to normal, and the doctors met in a semi circle around his bed to finally decide it must not be a brain tumor after all. MRI cancelled, and off they go. And we stand there, shaking with relief, with fear, with a “what just happened?” expression as they all head off to the next case.

All day, both of us sitting next to his bed, on the alert in case he woke up in pain, ready to pounce at the little button to call the nurse. All night, tossing and turning in the student dorm, or sitting in the dark ICU next to his bed, shivering, with a thick sheet wrapped around my legs, another around my body, watching the little red lights blink, which mean everything is ok.

And when we were both there and one of us needed to stretch our legs, or at “shift change” in the middle of the night, the long slow walk down the quiet hallways.

Being given bad news, the nurse taking me out of the room to comfort me so that I don’t cry in front of my son. Being given the good news, walking out into the hallway feeling like I’m going to fly to the moon, and seeing another mother who is crying. The nurse comes to her.

The strangest feeling as I sit here tonight in my quiet living room, is that I know there is a child in that bed and a mother pacing that hallway right now, as I sit comfortably at home.

How many other moms have I met since this adventure began? How many other kids? I’m not exactly sure, but some very close friendships have been born out of this bizarre twist in the road my life has taken.  It is such a strange feeling to be glad about the friendships I have made on this trip, and yet to know I would wish this experience on no one.  I have had laugh-out-loud moments with other cancermoms, giggling like teenagers as we talk about some of the strange or ridiculous hospital situations we have been in. I have been in tears with the same moms.

One of the scariest moments for me strangely enough involved another mom’s child. I was on a girl’s trip with some non-cancer friends to Prague, out shopping all day, going to a concert at night. I had been so looking forward to this trip, my first time away for over a year. But anxiety kept eating away at the edge of my mind, I felt I didn’t “belong” in this world. I had changed but the world had stayed the same. I didn’t care as much about buying clothes or gifts, I struggled to let go of the worrying but anxious thoughts clung to me like a heavy blanket wrapped around my shoulders, dragging me down, making every step difficult.  My two good friends, who had flown all the way from Canada to meet up with me, could probably sense it, they have known me for a couple decades now.

Suddenly, a text message, from another mom I know who was at the hospital for a check up for her 4 year old girl. The message is brief. “There’s a long bright spot on the scan. It can only be a relapse.”

I stood reading and re-reading the message, cold Prague air creeping up around my ankles, into my coat, up my spine.

For the first few seconds, I felt nothing, just a strange sharp pain in my stomach. No emotion. There was no reason to expect a relapse in this little girl right now. The treatment had been very successful.  There were no signs, no symptoms. Kind of like… Elliot, when we discovered his cancer. No symptom at all. A perfectly healthy child, running around being normal, and suddenly they tell you he’s at death’s door.

I started to type a message back right away.

I can’t believe it…” No, that feels wrong! Delete.

Are you sure?…” Wrong. Delete. The ache in my stomach is getting worse. My fingers are wrapped tightly around the phone, frozen from the cold.

What did the doctors say?” Stupid question. Delete.

I can’t think of what to write. And the reason I can’t think of what to write is that there is nothing I can write that will fix this.

So I finally just wrote: “I’m here.  I’m crying.” Knowing that was no help at all. And then the tears came, not just for this little girl and her mom, but for all the kids, and for mine, and then for me, who didn’t deserve to have to worry so much about my own child, who should have been able to just enjoy a damn girl’s trip to Prague.

Of course my friends did exactly what friends should do in situations like this, which is wrap their arms around me, take me out for some drinks and desert for supper. (Sidebar: absinthe is very very cool to watch, as the bartender prepares it and pours and burns the sugar on the special metal carved spoon, but it tastes terrible.  Despite the desperate times, we could not drink it, and quickly left the Absinthe bar for a more sophisticated restaurant serving wine and decadent Czech deserts).

My friends, eager to make me feel better, talked it over, and decided that I was probably getting too immersed in the cancer world. I was drowning, worrying about every child, and this was making me unable to see that everything was now ok with mine. We decided I need to start focusing on other things. Get a hobby. Take a class. I agreed, actually starting to feel slightly embarrassed at my little tearful breakdown. It was all so logical. I just needed to distance myself from the cancer world.

But instead of feeling better, I started to feel angry. The wine and desert kept the anger quiet for a while, but it seeped in at some point in the middle of the night. I kept it hidden for most of the next day, since I was travelling back to Geneva, and anyway it’s easy to disguise anger when you’re at the airport and your flight is late, everyone is angry anyway.

Somewhere over western Austria I finally admitted to myself that I had no intentions of focusing on other things. I was angry at this relapse. It didn’t make sense. It was illogical (which cancer is, of course) but things that are illogical bug me.  The girl’s mom and I had texted back and forth a bit and apparently the doctors were mystified too. All the other tests were fine, just this one image that showed a relapse. This cancer was (and still is) just a big bully trying to scare us into admitting defeat. Well, NO, I thought. I’m not hiding from this, I’m not going to pretend it can’t happen to me. It could.

Yes, the logical thing would be to protect myself, to distance myself from any unpleasantness. The truth is, I do that a lot. I can’t watch any movies or tv shows where kids get hurt or die. I stopped reading the newspaper because there’s always a story about some horrific tragedy involving kids. It’s easier to just avoid unpleasant things, isn’t it?

But here’s the thing: I can’t abandon a friend. No matter what. And if it were me, if one day it happens to Elliot, I would not want all my cancer mom friends to run away and hide. I would want them to join forces to support me through this, no matter what. To be there, to join in the fight, to hold hands if things go wrong. To be strong when I can’t.

And strangely enough, once I made this decision, the nagging anxiety I had felt even before the Prague trip lifted. Yes, bad things happen. They happen even when they shouldn’t  and sometimes the unfairness is so bitter you can taste it. But sometimes, good things happen too.  In the middle of the fight for your child’s life you find you have made a friend. In what should be your darkest days you laugh out loud at something silly. In your weakest moment you discover a strength that wasn’t there before.

So there you go. I’m not leaving the cancer world. I DID take up a hobby, completely unrelated to cancer (I’m taking piano lessons! Ack! My piano teacher says the fact that I played piano as a child will help me learn it again… That was before she heard me play the piece I had practiced all week… She smiles a lot, kind of like you do when your shoes are too tight.)

No, instead, I’m going to toughen up. I’m going to face the fact that tragedy happens. I can try to help, try to hope for a miracle for everyone I meet along the way. I can be there, in the same way I would hope someone would be there for me if I needed it. I can stand by my friend and face whatever comes. I can research treatment options if it helps and keep calm and logical because it’s easier to keep the facts clear when it’s not your child. I can feel all the pain and fear but can also keep repeating the most important fact. “the doctor believes they can cure her.”

And the anger? I’ve channeled it. I remember reading that anger is the best emotion to make you take action. Anger is motivating. Anger is fuel. So I’m angry at cancer, and the result is that I’ve decided to stop cancer. Yeah, that’s right. You know, when I put my mind to something, I can be pretty stubborn about it. So there’s a few paths I can take: either I can quit my job and go back to school to study to become a medical researcher, and find a cure for some of the worst childhood cancers. This has the definite disadvantage of a)taking WAY too much time b)requiring me to study and c)losing my salary in the meantime. Not to mention the fact that I want to do something NOW. (Did I mention I have no patience?) So my other option is to find people who already have done all the studying and schooling and all that boring stuff, and support them as they try to find a cure for the worst childhood cancers.

So if you want to know why I’m involved in fundraising, now you know: it’s because I’m too lazy to study. Yeah, I’m often immersed in the cancer world (except for my clearly brilliant moments of piano playing), but it’s a conscious choice.

Being strong all the time when you’re alone is impossible. But if all of us cancermoms, cancerdads, cancerfriends  stand together, our combined strength will be enough.

Friendship

Lately the cancer world has me pondering the importance of friendships. What would we do without friends? Women, especially, needs their gal pals. In fact, recently on facebook a post went around about a study that was done that determined the best thing a man can do for his health is to marry a woman, whereas the best thing a woman can for her health is to nurture her friendships with other women.

It’s just so true.

A friend can be there to support me through the difficult moments of Elliot’s diagnosis and treatment, even if her children have never had cancer. She “gets it”. It doesn’t matter that it’s not her child, she actually feels the fear and anxiety I feel. How do women do it? We take on all the pain and suffering of those around us. When someone we care about hurts, we hurt too. Men are better at compartmentalizing their lives, at separating their emotions from their actions.

I was chatting recently with a mom, whose son had cancer years ago and is now considered “cured” (apparently you can only say “cured” with quotation marks, because there is never a real guarantee. Darn it, and here I was hoping for some kind of official He Is Cured document from the hospital at some point!) She mentioned that someone had recently told her that she should now “shut the door” on cancer, that it’s part of the past and it’s time to move on to thinking about new things.

We stared at each other a bit after she said that. Then she said it would be pretty hard to do as she had just signed up for a two-year term working with a children’s cancer group.

We laughed.

The thing is, there’s no door to shut.

Being a cancer mom isn’t a choice, and it’s (unfortunately) not a temporary role. Nobody enters the cancer wold willingly, but once you’re there, you don’t have much of a choice. You adapt. Even my friends whose kids don’t have cancer have been dragged into this world with me, sure, not as intensely as I have, but whether they like it or not, they can now chat easily about blood cell levels and remission and chemotherapy side effects and vomit stain removal and needles and port-a-caths. And they can laugh at it all, and cry at it all, and while they laugh and cry they can also make supper and do two loads of laundry and find the missing lego piece and clean the living room and feed the cat and stop one child from hitting the other and text a friend and polish their toe nails. While they are doing all this the husband usually only has time to walk into the kitchen open a cupboard, stare into it’s depths for several minutes, then ask, “Where do we keep the salt?”.

Ok I don’t mean to insult the male population there, and I may be slightly exaggerating (my husband actually knows where the salt is!). But seriously folks, let’s take a few seconds here to applaud all the women out there, cancermoms and cancerfriends, who are going through this journey or have gone through it already.

I live in an all-male household. This has some advantages. I told Jesse the other day to take out the garbage, and he replied with some kind of grumble that sounded like “ok”. A friend of mine (male) with a teenage daughter recently told me he had asked his daughter to take out the garbage and the girl broke down crying, accused her dad of trying to ruin her life, and ran to her room, slamming the door. It turns out she had just done her hair and put on her new skirt which she had wanted to show her dad (which he failed to notice) and it was raining out, which, any woman would know, means there is no way the garbage is being taken out in these conditions and how dare you not notice my hair and outfit?!?!

Jesse took the garbage out without another word. He also did not bother to put on socks and shoes or a t-shirt. And it was raining out. When he came in I said,  “You”ll catch a cold going out like that!” and he grumbled something that sounded like “ok” and walked into the kitchen and ate an entire loaf of bread, jar of peanut butter and drank a liter of milk.

So there are advantages to the testosterone prominence in my home, and disadvantages. Sometimes, I miss having someone to talk things out with. There are occasions, during quiet moments, when I have said to my husband “So what do you want to talk about?” and he gets that slightly panicked look. Daniel comes home from school and I excitedly ask him how his day went, what did they do etc etc (It’s a new school year, I’m curious!) and he replies “it was very… school-ish.” and I don’t get much more than that…  I still recall noticing Jesse, around age 6, staring intensively out his bedroom window for a long thoughtful moment, and asking him what he was thinking about. He replied “Well, when I see a car, I think: ‘a car’. When I see a person, I think: ‘a person’.”

With my friends I can talk easily about all of life’s mysteries. The anxiety of worrying about a relapse. The ups and downs of every day life. The stress of juggling the kids’ back to school schedule. The joy of shoe shopping. The confusion of relationships.

There is a special bond between cancer friends too – we who have faced “the dragon” and felt its hot breath hovering over us (oh that was very descriptive, wasn’t it? Feels right, like we’re little knights in shining armour brandishing our swords above our heads, torn between fear and fury).

You would think a group of women bonded by cancer would be a sad, weeping lot, all of us sitting together in a semi-circle, sharing our sad tales over tea, a box of kleenex nearby being quickly used up. Well, so far, in my experience, it has been quite the contrary! Swap that tea for a good bottle of red wine and there we are, laughing our heads off as one mom tells the story of sneaking a pizza in to her daughter’s hospital room and being caught by a nurse. Keep the kleenex – we’re laughing so hard we’re crying.

Don’t get me wrong. Behind that pizza story is the very real image burned into our minds of the mom who has stayed by her child’s bedside for days, the i.v.s of chemotherapy and anti-cancer medicine hanging overhead, and then the anti-nausea medicine, the anti-pain medicine, the medicine that helps you get over your addiction to the anti-pain medicine, the medicine that helps you sleep, stay awake, poop, not poop, and of course the medicine to treat the side effects of all the medicine. The mom who is exhausted, hungry, scared, sad, and has decided that dammit, she’s having pizza with her kid. The mom who is overjoyed if her child is actually willing to eat one bite of food.

We don’t need her to explain all that because we’ve all lived it. What we need, mostly, is to laugh. And be together.

Because when the dragon rears its head and starts charging at you, and all you’ve got is your little sword, you need everyone else to show up with their little swords. One dragon against a whole bunch of sword carrying women (and a pizza) is all we need to keep fighting. And hopefully, most of the time, win the war.