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.

 

Meaning

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Lately, a few friends of mine have mentioned that they are feeling down. Life sometimes takes a strange, unexpected turn, and you are thrown off balance, wondering what you did to deserve this.

It doesn’t help that it’s grey and raining out, every day for the last week has been hidden from the sun. All of us are just walking around in the pale grey light like ghosts floating amidst shadows, everything around us is coated in milky cloudy colors.

Days like these blend into each other, if someone asks you later what you did last Tuesday you can’t remember the difference between Tuesday and Wednesday. Maybe there was none.

Do you ever look back at how you were as a teenager, and wish you could warn that person? Or at least, give her a hint? I do. I sometimes think about her and feel like…she has no idea yet! She still thinks she’s going to meet the love of her life next year, get married in a castle and have several perfect kids, have a meaningful career that makes a difference, have a close circle of friends that are funny and cool (probably called Phoebe, Monica and Rachel, or something like that) and live an exciting life of adventure and meaning, leaving a mark on the world when she finally passes away at an old age, her many admirers gathering to have a huge party celebrating her life.

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She has no idea yet… 🙂

Where and when did that plan start to derail? Was it a slow process, a gradual silent shifting of gears, or a sudden, quick flash of lightning in her face, blinding her with its bright white light, leaving her forced to feel her way with her hands outstretched, guessing at where she was going?

And most importantly, was it meant to be like this?

I found a photo of Elliot recently. It was taken while on holiday in Denmark, about 6 weeks before his diagnosis. He is standing on the beach, his feet under water, a huge smile on his face. We had taken off his wet clothing, so he’s just in his little underwear, no shame of course at age 4, his arms held high as he waves at the sun.

If I look really closely at the photo, I can see the bump on the lower right side of his abdomen. The bump that turned out to be a tumour. The tumour that was cancerous. The cancer that spread to his lungs, making it stage 4.

What if I had noticed it back then? Would six weeks have meant it would not have metastasized yet? Would it have made a difference? But no, there’s no turning back time, I can’t go back and spot the bump earlier.

But what if I hadn’t found it when I did? What if I hadn’t noticed even 6 weeks later?

These questions could haunt me. But strangely enough, I don’t bother with them much. I know it serves no purpose to analyze all the “ what ifs”.

But I do wonder about whether or not this path in our life was meant to be, or whether we have any control over our destinies.

I like to think I have some control. Oh who am I kidding, I’m a total control freak. I secretly semi-consciously believe I am the best at everything important. (Note to the critics: putting gas in the car is not on my “important” list).

So it’s hard to let go, and accept that not everything is within my control…

I suppose that makes me Monica. Hey, which one of my friends right now is SURE she’s Rachel??image

So at times like these when some of my friends are feeling a bit down, I feel I should be able to “fix it”. Monica can do anything! She can clean the apartment and bake twelve lasagnas and analyze her friend’s love life and drink coffee and look fabulous all at the same time.  And she’s only mildly annoying as she’s doing it all. So why can’t I fix all the world’s problems, or at least all my friends’?

Well, I guess maybe, just maybe, I have to admit… some problems are actually out of my control… For one thing, I can’t stop the rain. Hey that should be a song.

And what about all my other dreams? I did meet Prince Charming eventually; it just took me a few decades longer than expected.  We got married at the city hall… a building potentially old enough to qualify as a castle in my books… My kids are truly perfect (ok maybe it would be nice if I didn’t cringe every time I had to enter their bathroom…) My life is certainly exciting and meaningful,  although most cancermoms would agree with me that a little less excitement could be nice…Hmmmm. Am I actually the victim of my own wishes? Isn’t there an old Chinese proverb that says “be careful what you wish for, it might come true?”

Is my life a milder version of that old suspense story by W.W. Jacobs, The Monkey’s Paw, where  a person’s wishes are granted, but with unexpected consequences? Is life just a series of random acts, or does everything you do and think affect something else?

What’s that thing about the butterfly making enough wind with its wings to cause a cyclone in another part of the world?

A friend’s daughter recently just finished her treatment for leukemia.  For those not in the cancer world, or at least not the leukemia world, treatment for the most common leukemia (ALL) takes roughly two and half years for a girl (longer for boys).  This is a huge part of your life, not to mention your child’s life! In fact, my friend’s daughter has spent more time in treatment than not. To say that this was a difficult time is not even close to being able to describe what leukemia parents and kids go through.  I thought that the 10 months of Elliot’s treatment was interminable, imagine years.  And because of the long treatment cycle, immunity is often low for long periods of time, so the kids are often restricted in what activities they can participate in.  Many miss out on school, friends, parties, outdoor activities, events, in fact, anywhere there might be a risk of catching something… The family lives in a bubble, in an “alternate reality”.

And that’s when things go well.

Often, despite all these precautions, a leukemia kid will still catch some virus, bacteria or fungus. You know, there are fungi called aspergillosis, I looked this up because I was curious what the risk was to Elliot when he was in treatment… They just float around in the air, everywhere. You can’t escape it, only normal people living outside of the alternate reality of cancer, have immune systems that just deal with those little buggers and destroy them right away.  But for leukemia kids, these little beings are just waiting for their chance… In fact, one of the leading causes of serious infection during treatment is called “opportunistic infection”, it means there are creatures out there in the world, little germs, just hovering in the air waiting for an opportunity…

Sigh.

But wait! She made it through the treatment. She made it through a variety of infections and reactions and long term hospitalizations, and the treatment and side effects and got to the last day of chemo. (Actually, she jump-started the last day of chemo by cleverly getting  so sick from one of the heavier treatments a couple weeks before the end of chemo date, so that they finally decided to just not even give her that last pill. Clever girl.)

And the parents breathed a huge sigh of relief!! And the family and friends and everyone who had followed her story cheered! They signed her up for school, to start the day after the Easter holidays. Hurray!! Life would get back to “normal” after years, they would be allowed to leave the alternate reality!

Then the family went skiing…

Is it irony? Is it almost tragi-comedy? Is it enough to make you scream out loud?

She broke her leg skiing. Three days before starting school.

The type of thing that when you hear about it, you literally don’t know if you should laugh or cry. Maybe you should do both.

On the one hand, how incredibly  incredibly frustrating to go through all that  treatment and just before normal life starts you are back in the hospital world.

On the other hand, how normal… How incredibly nice and normal to be at the hospital with a kid who broke her leg skiing… That’s a “normal kid” problem!! People outside the cancer world can maybe not quite understand this but… She was skiing!!!!! The little girl who just a few months ago was battling a fungi attack in her lungs! The little girl who probably knows various chemo regimens by name, who can most likely tell you the exact dose of methotrexate it would take to make her puke!

When I got the news I felt just awful for my friend, who once again had to rush to the hospital with a hurt child. My friend who felt guilt, because moms always feel guilt even if it’s not our fault, because somehow we think we should be able to prevent any bad thing from happening, especially to a child who has endured more than her fair share of bad things.

But at the same time, I also felt a strange feeling of gratitude and pride. Because she was skiing. She was being normal.

And after all, isn’t that what we want most for our child? To be able to live life to the fullest, take risks, fall and get back up again (with a cast maybe), be happy?

Maybe that is all the meaning we need.

 

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.

Feelings

How are you feeling?

I get that question a lot. How do you feel? How are you doing? How are you holding up?

It’s comforting to know that people care. But it’s also so hard to answer. The emotional range inside me can be quite vast. Sometimes I’m not even sure how I feel.

I don’t think I will ever go back to how I felt “before”. That’s because even when things are looking really good for Elliot, really quite optimistic, there is one feeling I can’t seem to get back: feeling carefree. That feeling has left the building.

There’s one feeling that is constant, that I think many cancer world inhabitants can relate to. Sometimes just a faint whisper of it in the background of your mind, other times a huge roar overwhelming you. I can’t quite name it, it’s not something I felt before this. But the best description is that’s it’s a cross between anger and fear. Those two feelings combine to make one overpowering feeling… Shall we call it Fanger?

And it’s not just plain anger and fear, but outright rage and overwhelming terror, all rolled into one emotion.  That’s Fanger.

It’s what you feel when you think about the Whys. And the What Ifs. It goes quite well with a nice serving of the phrase “It’s not fair.” (Add whatever extra words in that sentence you deem necessary).

Another strange feeling I have felt since beginning this cancer journey is called Wope. It’s a combination of Hope and Worry. It feels like juggling ten sharp swords while riding a unicycle on a tightrope which is maybe hanging over a net… Nobody really wants to be around you when you’re feeling Wope so it’s best to keep it to yourself.

Oh and then there’s that lovely feeling Anxhaustion, the overwhelming anxiety mixed up with absolute exhaustion, which is encountered usually about three hours before you can possibly go to bed, and often being especially high on the days before a scan or MRI.  Anyone messes with a person feeling Anxhaustion is likely to get their head bit off.

Oh but wait, one of my favorites is Imdreadcipation, isn’t it yours too? That wonderful cocktail of impatience, dread and anticipation you feel while waiting for the test results, waiting to see the oncologist, waiting to get the chemo, waiting to have a scan, waiting, waiting, waiting…

Then again there’s that occasional bout of Nervanity, that combo of nervousness and insanity that often strikes suddenly, like right after your child has knocked over the tray of medicine in his struggle to get away from the nurse and you have to start the whole procedure over, and you are overcome with completely inappropriate laughter.

And let’s not forget Sorryuckyourself, often felt when people stare at you when you’re out in public. I’ve felt it when stopping quickly for groceries at the store after a chemo day and Elliot has an “I want a toy” tantrum. It’s a mix of feeling sorry for yourself and feeling like telling people exactly what they can do with their parenting advice.

But the very best, I guess, is Grelief, the mix of relief when you finally get good results and grief at the knowledge that your life will never be the same again.