Tag Archives: Fear

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.

 

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.

Worry

The subject of worrying is one that comes up frequently in my mind. I often have little debates with myself about my worries; in fact sometimes the little debates turn into outright arguments… How dare you think of this worry again?!?! We just spent the whole afternoon yesterday going over this! Remember? We looked in the mirror and told her to cut it out, it was senseless! Did you not listen?

The thing is, I can worry about almost anything. There is a part of me (that alternate person inside) who comes up with stuff you would not imagine. My husband likes to say I would not want to miss out on any opportunity for a good worry. He’s kind of right, the worrier in me loves to get her teeth into a real good worry bone and gnaw at it for hours, while the other, more sensible me is the one trying to grab the bone away and toss it into the garbage. It’s a dangerous battle.

About a month ago, I noticed that Elliot was sweating while he slept. His new little wisps of hair were all damp and there was a damp spot on the pillow.

Panic.

If you google “child cancer” and “night sweating”, you will immediately find out that these two subjects are inexorably linked like salt and pepper, like peanut butter and jam, like backflips and Jesse. It’s basically a clear cut case: bad, bad news.

I worried at it the entire next day, occasionally being distracted while playing with Elliot who was running around being silly, or by making him another meal or snack since he is eating all the time.  I returned to my laptop several times in between taking care of my active, energetic boy to google alternate variations of the same thing: “sweat” and “wilms tumour”, or “sweating” and “cancer recurrence”. The prognostic was always just as terrible.

Finally I have the courage (and time) to tell my husband late that evening. His reply: “He’s always been like that, hasn’t he?”

I think it over.

Yes, actually, it does seem that he often has been kind of a sweaty kid.

In fact, I remember some photos of a trip we took a few years ago, and his hair is all damp.

So maybe?… Just maybe… It’s NOT a sign of recurrence?

Staring to feel a bit of relief. A bit of light is shining into my dark tunnel of despair.

For about an hour, the worry subsides. Then…

“BUT WAIT!” yells the other voice inside my head.

“What?” I answer cautiously, unsure I want to hear the answer.

“Sure, he’s always been like that, but HE ALWAYS HAD CANCER!!!”

“Wait a minute.” I reply, trying to quell the rising fear. “He didn’t ALWAYS have cancer. We don’t know how long it was there before it was discovered. “

“That’s right” says the voice, now filling me with cold dread. “YOU DON’T KNOW!!”

So I google everything I can think of to try to determine how long the cancer was likely there before it was diagnosed, and cannot find any definite answer. I basically find every possibility from the option that it started to grow only a couple months before being found, to the possibility that it was already in the works when my husband and I went on our first date.

To the worrier in me, this means I have to keep worrying. Until I have a definite answer, the worry cannot be shut down.

At one point I get exhausted and somehow manage to stop thinking about it.

The next day at work, my worries are back at full force.

A good friend and I are sitting in the break room chatting. She knows me well enough to know when I’m not ok. So she asks. So I tell her all about it. About the Terrible Night Sweating Symptom.

She doesn’t even miss a beat. “Nicole.” She says, and waves her hand toward the window, where the sun is blindingly bright on the hot pavement. “ It’s 36 degrees out. Of course he’s sweating. We’re all sweating.” She smiles kindly, but also looks like she knows I’m slightly insane. (This is the beauty of my friendships, they like me anyway.)

I stare at her for a while, the madwoman in me trying to come up with a plausible counter argument.

“But he didn’t sweat like this while he was getting chemo.”

“It was winter.”

“Yeah, I guess you’re right…” The worrier in me is unconvinced but has basically run out of arguments. The strong, brave, self-confident me starts to re-emerge.

“Of course, you’re right. What was I thinking?” I say, relief starting to flow back into me like light into my dark tunnel of despair. (It’s a bit of a merry-go-round in here.)

Now I’m feeling silly. I actually indulged this worry for two days!

“You know”, I add, he’s eating well and has tons of energy, and loves school…” My friend is smiling, she has won this battle.

I think of Elliot at school. Then a thought. Just a glimmer, at first, then it works its way into the front of my mind… The other day at school I was watching him running around outside during recess and I noticed that he doesn’t run as fast as most of the other kids!

Panic!

I mention this as casually as possible to my friend.

“He’s been basically inactive for a year.” She says. “And didn’t you say one of the chemo drugs affects his nerves and reflexes and that it would take time to recover?”

I am hearing her, but the other part of me is aching to get on the computer and google “cancer recurrence” and “running speed”… Or maybe “wilms tumour” and “how-fast-do-normal-kids-run”… or maybe…

So here’s the thing. I have decided to put a stop once and for all to these paralyzing worries. I have come up with A Strategy.

The basic concept is this: when I worry, I will classify my worries into one of two categories: productive or un-productive.  The productive category  includes worries that actually can lead to some kind of action: for example, I’m driving and am worried I might run out of gas since the light is blinking, so I drive to a gas station. (This, by the way, rarely happens as Martin seems to have this worry so overwhelmingly under control that our cars are almost never below ¼. Isn’t he great? Or maybe he knows that I am strangely unafraid to take a chance with it, telling myself that “it’s downhill most of the way”?)

The unproductive category would be things that are un-solvable, things that just cause me to continue to analyze, research and ruminate over them without any solution or action being possible. For example, when I consider the possibility that the team of oncologists and specialists overseeing Elliot’s case might, during their weekly patient review meetings, be laughing and tossing the dice to determine which chemo to give Elliot this week.  It is, after all, not much use to worry about whether the last oncologist we saw, who has over 30 years of experience in this field, might not quite have as much information about Elliot’s cancer as my google searches have given me. At some point, I just have to decide to trust these guys. Trust them with my little boy’s life.

So there you have it: my Anti-Worry Strategy. I’ll let you know how it goes.  Perhaps as an additional tactic I should get google to ban me from too many searches, the way casinos ban gambling addicts?