My son survived – why bother pushing for research?

Beautiful boy

 

A few months ago I attended at conference on Accelerating the Development of New Oncology Drugs for Children and Adolescents. The first day was packed with fascinating, complicated presentations all revolving around the issue of how to get new drugs and new treatments available in order to save more children with cancer.

Later that evening, I sat in the bar with several parents, oncologists and industry reps, as we discussed the need for research.

Many of the parents attending that meeting had lost their child to cancer. They were there because they are committed to making a difference for other kids-  the kids diagnosed today, the ones of tomorrow.

At one point, a person (not a cancer-parent) asked me why, since my son had survived, I was so committed to advancing research.

It’s one of those questions that, when asked, feels like the answer is so obvious that you actually struggle to put words on it.

Why am I involved? Is it my place to be part of this battle?

My son Elliot was in treatment for almost a year, along with several other kids. I made good friends during those long days spent at the hospitals, friendships are forged in those difficult moments that are unlike any from the outside world.

Even my online friends, many of whom I actually met for the first time at the conference in Brussels, feel like people I have known for ages.

And it’s true, while many of these friends have lost their child, mine survived.

So I don’t have the grief that they do. I don’t have that intense pain that they all carry and hold tight within them, surviving every day, every moment, by taking one step at a time.

I feel incredibly sad for the loss of their children but to say I feel anything remotely close to what they feel would be wrong.

I don’t have the grief they carry. I am so incredibly lucky, because it is a grief that is incomparable to anything else, that I can sense and understand, but not really feel.

But I do grieve. I am sad and angry. Sometimes overwhelmingly so. Just not for the same reasons.

I don’t grieve for the loss of a child.

I grieve for them. These parents. These moms and dads who have suffered the loss of a child. My friends, who suffer, and will continue to suffer, even though they all bravely get up every day and choose to make the best of the day and try to look for the sun shining.

While I may not feel the loss of a child, I know what it is to visit a little girl’s grave with her mom. To pick a few weeds from between the flowers, to straighten the candles and dust the light snow off the little teddy bear sitting there. I know what it is to talk to someone who’s child had the same cancer as Elliot and didn’t survive. The injustice. I know a friend relives the last moments of her child’s life when she closes her eyes sometimes at night. I have another friend who is haunted by those last moments because the palliative care was not up to par. I have a friend who was by her son’s bedside when I first started to write this article (it always takes me several days to complete as I proofread several times) for his last few days, as the osteosarcoma he had could not be cured. He’s gone now.

Osteosarcoma, which has seen almost no change in treatment in decades. The same chemotherapies thrown desperately at the same cancer cells, which hold them back for a little while until they adapt and come back even stronger.

I feel such anger, sadness and frustration about this.

I don’t want to watch any more moms lose their child. I don’t want to hear any more dads talk about their daughter in the past tense. I can’t. I won’t.

I have to make a difference.

That’s why.

 

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.

 

Becoming Swiss

me swiss

Years ago, I started writing about moving to Switzerland. My articles were surprisingly wildly popular, not just with the local expat community but with people back home who were interested in experiencing such a dramatic change in life vicariously from the comfort of their cozy homes.

Twelve years went by in the blink of an eye, (ok there was a long moment there in the middle while I dealt with getting maried, having a baby, moving twice and dealing with other major life-shaking events), but in any case, there I was, still in Switzerland.

Twelve years is the “magic number” here. It is at this point that the Powers That Be have determined I might be able to actually qualify for Swiss citizenship.

Oh don’t go jumping to conclusions and buying me a decorative cow bell or fondue pot yet! The 12 year residency rule is just the beginning of the many hoops I have to jump through in my quest to… become Swiss!

On a bright Tuesday morning in October 2013 I set out for the “Administration communale” – the local city hall for my small town. It was exactly 12 years and one day since I had stumbled off the plane in Geneva with my two kids, one black cat and small mountain of suitcases. I entered the room marked “office de la population” and waited.

A woman came over and I correctly said “Bonjour” before explaining my reasons for being there. I felt I was clearly qualified to be Swiss, having mastered the subtle bonjour/bon après midi/bonsoir rules of social etiquette as well as having the correct number of years of residence (plus a day).

She checked my C permit and then searched in the nearby file cabinet for the right paperwork, then happily handed me some sheets. I left the building a short while later clutching the forms which would pave the way for me to Become Swiss.

And then, it almost seemed too easy. I quickly filled in the various forms and mailed them in with a copy of my passport and work permit. And then I waited.

And waited.

And waited.

Perhaps, I considered, the true test of Swissness is patience. I would show them I was up to the task.

Six months went by. And then, lo and behold! A letter in the mail! An explanation that my request to request Swiss citizenship had been approved. Yes, you read that right, my request to request it. I now had a letter stating that I was qualified to make the request. And a long form to fill out…

This one was not so easy. The Swiss really want to know everything I’ve done since I was born. Everything. Every address I ever had, every school I ever went to, every job I ever held. E-ver-y-thing…

It took me a while to fill it in. For one thing, I have lived in 20 homes, went to 11 schools and have held 10 jobs if you count the time I was an elf. (I actually worried about that one as it might be seen as weird. Should I specify that it was only during the christmas holidays, so that they wouldn’t think I had a closet full of weird green clothes and long felt shoes with curled toes and a hat with bells? Speaking of which, what if they come to inspect my home? How will I ever get it clean enough?)

In any case, I also had to provide a variety of documents certifying I really was who I claimed to be and then also certifying that this person I claimed to be had no criminal records or bad credit ratings (both very, very bad things if you want to be Swiss).

It took me almost six months to get all the documents together and I mailed the whole package in victoriously.

About a year went by, and then one day the police called me. Now, if you’re like me, as soon as the phone rings and the person says they are the police, you immediately: 1- hope your kids are alive, and 2 – hope your kids have not done anything that makes you want to kill them. Not always in that order.

But in this case, it was ME they were after! I was being summoned for an interview to discuss my Swissness request . (By the way, they don’t actually use the word Swissness here, that’s my invention. I hope it doesn’t cause me problems. I’m already probably on thin ice with the elf thing.)

A couple weeks later I arrived for my appointment at the precinct. I made sure to park in a blue zone s

2016-01-13 11.49.52

pot and put my timer-turny-thingy in the window (there may actually be a name for the thing, but anyone in Switzerland knows what I’m talking about. It basically marks how long you have been parked in a limited time zone.) Then I worried that I would run out of time and have to interrupt the meeting to come out and move my car. That would be rude, wouldn’t it? Oh but maybe that’s the test! To see if I abide by the laws enough to be willing to put my Swissness request in jeopardy by running outside during an important meeting?

In any case, the police escorted me into a small room where I sat under a hot bright light and they drilled questions at me, hoping I would crack .

Ok it wasn’t really like that. We sat around a table on mostly comfortable chairs and they did ask me lots of questions, but nothing too intense. Mostly, they seemed to be trying to determine whether or not I adhered to the Swiss way of life and Swiss values. They asked several questions which I answered as best as I could, and then they actually just came right out and asked it, the one key question, the most important element:

“What is your opinion about democracy?”

They stared directly into my eyes in an unbroken gaze, the two of them, which made it hard for me to gaze back because I wasn’t sure who I should stare back at to prove my unflinching dedication.

Believe it or not, that’s actually a hard question to answer descriptively. What do I think about democracy? Well, I’ve never known anything else, so it’s something I’ve always just taken for granted. I scrambled for an appropriate answer, something that would convey my decidedly certain absolute positivety about being resolutely in favour of the democratic way. What I actually said was probably something resembling, “Uh… I’m for it?”

I thought quickly, stumbling over unsatisfying words to add to this answer in order to assure them that I was not here to overthrow the peaceful and fair system of government in order to rule the land and change it’s name to Nicoledom. (To be fair, who wouldn’t want to live in Nicoledom? Free ice cream guys.)

photo-57 (1)

I basically did manage to convice them that my political views were acceptable in a typically Canadian way, that is, I didn’t have any extreme views about politics as long as there were no crazies in charge.

55 minutes later (just in time for the parking spot! Coincidence? I think not!) I was released into the general population. Apparently, I had passed.

Step one: live here 12 years

check mark

Step two: request to request citizenship approved

check mark

Step three: citizenship request submitted

check mark

Step four: police interview passed

check mark

I was well on my way to true certifiable Swissness! I almost felt like breaking out the chocolate to celebrate.

Little did I know, more tests, challenges and chocolate were to come…

chocolate