Category Archives: Cancer

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.

 

On Mother’s Day

This morning I woke up early. My living is room is quiet and calm, everyone is still asleep. Elliot got up in the middle of the night and came into our bed, he’s still lying there in the middle, sound asleep, leaving Martin roughly 5 centimeters of bed to sleep on and 2 centimeters of blanket to use.

Jesse and Daniel came home late last night, and won’t be up for a while.

It’s on mornings like these, when the only sound is the wind blowing outside, that I grab a coffee and write.

Today is mother’s day. Later on, I’ll call my mom in Canada.

But for now I’m thinking about this symbolic day, and the three moms I know who lost their children last year to cancer.

Mother’s day… It must be such a difficult day for them.

Which makes me wonder, why do we celebrate this day, actually?

So, since I am after all, an information addict, I turn to the internet to do some research on the history of mother’s day. And what I find is really quite interesting.

The earliest recorded history of celebration of mothers dates back to ancient Greece. But it wasn’t until 1908 in the United States, that mother’s day was officially created and celebrated. Since then, the day has been commemorated internationally every year.

Do you know why the day was created? I didn’t.

So, here’s the story of Ann Marie Jarvis (1832-1905), a mom who had 11 children. Sadly, 7 of her children died from illnesses like measles, typhoid fever and diphtheria.

Losing her kids motivated Ann to take action. She decided to do something to try to reduce childhood mortality rates, to help other families.

So she created the Mother Day Work Clubs, who worked at improving sanitation and living conditions in several local towns. Their goal was to help improve access to health care, share experience and knowledge about proper sanitation and raise funds for medicine for families in need. They helped families with a sick child or an ill mother. They created a program for inspecting milk which was given to kids, long before the government implemented such a program. They were asked to help care for injured soldiers during the civil war, which they did for both sides of the conflict after declaring their neutrality.

After the war, public officials sought a way to alleviate post-war strife, and once more Ann was called upon to help. She planned a “Mothers Friendship Day”, and invited all soldiers from both sides of the conflict and their families, despite criticism and even threats. An immense crowd arrived on the designated day. Ann explained the purpose of Mothers Friendship Day and asked the band to lead them in singing Way Down South in Dixie, followed by The Star Spangled Banner. The tensions dissipated when the band then launched into Auld Lang Syne… According to records, by the time the song was over, it seemed that everyone began to weep and shake hands.

All of this happened because one woman decided to find some meaning in the loss of her children, to try to make a difference for others.

Three years after her death, Ann’s daughter Anna succeeded in convincing the American government to officially declare Mother’s day in honour of her mom. Since then, on that day, mothers are honoured for their hard work in taking care of children and trying to improve the quality of life for kids everywhere. It’s a day when we are meant to remember the children who have left us, and when we remind ourselves that if we work together, we can make a difference.

Happy mother’s day.

Ann Marie Jarvis, who created the Mother's day Work Clubs in order to help save the lives of other children, after losing her own.
Ann Marie Jarvis, who created the Mother’s Day Work Clubs in order to help save the lives of other children, despite losing her own.

 

How Not to Cry

Yes, I spoke at her funeral. I wrote a text which I practiced at home and then read in front of the hundreds of people there. I looked away from the people and instead focused on her photo. I was speaking to her, after all, so I spoke to the huge picture of her smiling 4 year old face on the altar, next to the flowers and teddy bears, balloons and toys surrounding the wooden box containing her ashes.

I didn’t cry. Not even a bit.

And people said I was strong. Some people hinted that there was something abnormal about me. Emotionless? My husband would probably laugh at that. Martin has to preview movies and tv shows before I watch them in case they are too sad or upsetting. I frequently am told “Oh I found a great new TV show but you can’t watch it.” We have a perfect way of sharing tasks in our home in fact. In addition to checking whether movies and tv shows are Nicole-proof, Martin also buys all the groceries, puts gas in both our cars, is in charge of the wine-supply (important!), and has developed an elaborate document scanning system to minimize useless paperwork… (hey wait a minute, what are all those papers piled around his computer over there?) I cook the food he buys, drive the cars until they are wheezing forward on fumes alone, drink the wine, and open the mail. Sounds fair enough, right?

 

My point is, I am anything but emotionless. Inside, my tears were like Niagara Falls at her funeral. But I kept it in, not out of a lack of feeling.

No, it’s just that I wasn’t there for me. I was there to support her family, and in that role, the best thing I could do for them was to be strong and hold it all in. So, I had to make sure I didn’t cry. How? It’s complicated. A delicate balance between extreme concentration on what I’m doing while at the same time avoiding any thoughts about what I am doing. So if you noticed I wasn’t really very social on that day it’s because my brain was too busy doing cartwheels. Talking would potentially have upset the delicate balance.

Now, time has passed. I’ve been to the grave a few times. I’ve re-lit the candles and swept the snow off the teddy bears and stood looking at the ground. She’s not really there. I don’t feel her presence, not like the way I do when I’m driving in the car and hear one of the songs she liked so much. The grave is a place on this earth for a person who is no longer on this earth. The grave is for us. So I try to make it look nice. But I don’t think Zoé would stay there long, anyway, there are not enough toys. The other day there was quite a bit of snow covering everything, she would have liked that I think. I bet she would have laughed hysterically and run around getting cold and covered in snow and not cared at all about the consequences.

I forgot my gloves and swept the snow off all the teddy bears and flowers with my hands and felt my fingers freeze but I didn’t notice they hurt till I was back in the car later and they started to thaw. So maybe I’m not emotionless but feelingless? Numb?

No, that’s not it. I just don’t show it. In fact, I feel a lot of sadness and anger at the thought that Zoé died . Yes, there, I said it. I know we’re supposed to say things like Zoé “passed away” or “left us” or “went to a better place”.  Does it make it feel less harsh, less upsetting, to not use the word “died”? But that’s what happened. She died and it’s totally, completely unfair and it hurts. It’s just a word. Whether you want to say passed away or died, it comes down to the same thing. She died and we didn’t so we’re left here with her teddy bears and toys. And she’s somewhere else, probably having loads of fun because she just was not the type of person who sat around thinking about the difference between the words “died” and “passed away” and whether or not you should or shouldn’t cry at funerals. I bet if Zoé had lived she would have been the type of adult who never put gas in her car and drove on fumes, because she just had too many other fun things to do to stop. And maybe that’s why it feels so unfair, because we don’t get to share those moments with her. I would love to have had the chance to run out of gas with adult Zoé.

But I guess there is something to be learned from all this (other than the sudden realization that came over me when I wrote that last sentence that maybe some people are just born without the ability to notice the car gas level, which means that running out of gas is actually not my fault but a true genetic predisposition). There must be a lesson in all this because I don’t always feel sad and angry, often I’m happy when I think about Zoé, because she existed, and because through her I made some new friends. Even though there is tragedy in the story, there is also happiness.

You could say the lesson is to live in the moment and treasure all the time you have together because you never know when it could end. And that would be true. But I’ve tried that, and it takes a huge amount of energy to always live in the present moment. And it’s just not always possible because sometimes you need to plan for the future. For one thing, in our home, if I stopped planning for the future and chose to live in the moment we would be eating a lot of raw meat. Many children in this home would be wearing clothes that are dirty and several sizes too small. My older boys would have to wear shoes that have holes in the front for their toes to poke through.  I would not be able to see my husband at his computer behind the piles of paper and things surrounding him. (hey wait a minute… it’s already like that!) And of course if I didn’t think of the future ever I would probably be sitting here pregnant with my 25th child. (Oh I almost had a little heart attack just at the thought.)

So no, I just can’t live in the moment all the time. And I do appreciate all the time I have with all the people I care about, but sometimes I also appreciate being alone.

So what the lesson? Zoé, are you listening here? Any advice? (I know it’s an ironic thing to write because not only was Zoé not able to read yet but she didn’t speak a word of English. But I like to think that when she left her body here, she became a multi-lingual intellectual. I still think she’s running out of gas in her car up there though. Some things can’t change.)

Ah, the answer does come to me. A thought sent from “above” or just the logical answer to my question? Who knows.

Fun. Zoé always chose fun. That’s the lesson.

 

They say life is not measured by the number of breaths you take but by the number of moments that take your breath away. So maybe I didn’t get to drive around with Zoé in a car with no gas (why do I envision us like Thelma and Louise in that description?) But I did have some fun with her, I am even proud to say she once insisted on coming over to my place to be babysat when her mom had an appointment. And we did have fun.

In the end, you probably only regret the things you chose not to do, not the things you did. So while we’re here let’s live like Zoé and have fun.

So when I’m gone, I hope someone passes by my grave and keeps it pretty too. But I won’t be there. Not enough toys.