Justice vs. Equality

Photo by Sora Shimazaki from Pexels

“It’s not fair!”

During our first few days reunited as a family, after Violet was discharged from the hospital for a bit of reprieve, these words were almost music to my ears. The girls were fighting again. Which meant the girls were sisters again. And any sound that acknowledged a return to something normal was magical.

But by the hundredth declaration, I was over it again.

Justice. It’s a funny concept. At the best of times, children struggle with this. We all do. But now, in this context, it seems utterly ridiculous.

Maybe it’s because we confuse fairness with uniformity. Things are never even. Context muddles what equality even means. For sisters, whoever gets 3 more marshmallows in their Lucky Charms is somehow taking more from the universe than they deserve, and it’s Mom’s job to even the playing field. 

So, whose responsibility is it to makes things fair when you have cancer?

Over the past week or so, this concept of equality – of competition and fairness and justice and righteousness – keeps coming up again and again. The first time I really took notice was when a dear friend of mine sent a message from the hospital in Alberta, telling me she was there to follow up regarding a potential surgery for her daughter. She was thinking of us, and immediately apologetic, it seemed, that she was even bringing up their personal challenges in light of our situation. How dare she mention to me, of all people, any anxieties she is having over her own kid’s health struggles when they failed to compare to what we were going through?

And it wasn’t the first time, either.

My own father, who has been having his own health trials throughout this process, sent me a note saying that he felt so awful when complaining to my mom about his aches and pains. “How could I feel sorry for myself when that sweet little girl is going through this?”

We are all living our own lives, full of our own unique combination of aches and pains and agonies. They don’t need to be justified, nor do they need to be compared. Because life isn’t even, but it’s always fair.

Maybe that’s a stretch for a lot of people. I come from a fairly “out there” spiritual perspective, but it’s one that has served me well, and is valuable beyond measure in a circumstance like this. I believe that our lives unfold based on momentum, not on merit. I believe we are all good people doing our best with what we’ve got, and that includes our opinions and experiences and attitudes. We all want different things, but at the core, we all want to feel good. We all want to feel better. What we want isn’t really about the details – the car, the lottery, the marshmallows in our Lucky Charms. 

What we want is security. Connection to others. A sense of belonging. Pleasure. Comfort. Love, or as close to it as we feel we can aim for or deserve. We are all playing our own game, with our own set of rules, and our own expectations and desires. And when we compare them to others, it muddies the waters of what really matters. When we try to look at things like everything should be even, it ends up in anxiety and jealousy and anger and fear.

It’s summertime, and in Peachland, everyone is up to the things they should be. The things people move to the Okanagan to enjoy. Boat rides. Camping trips. Splash parks. Beach days. Our family, like everyone else in town, waits all year for this season of pleasure. Facebook kindly reminds me daily of all the fun we are missing out on. All the gatherings and bonding sessions and sun soaking. We are even missing out on celebrating with our close friends who have finally moved to Peachland – a celebration we’ve been waiting for for years. They are there, but we are not.

It’s not fair.

But then, there’s another angle. Another trillion angles, actually, which is what really makes the difference when trying to figure out what’s fair, or right, or just. No, we can’t be at home, snuggling our dogs and making weekend barbecue plans. But here, we have an entirely different opportunity to suck the life out of the season. At the Ronald McDonald House, where our family will take residence for the next 18 months or so, they have daily activities to keep the kids busy. Art in the Park, scavenger hunts, sprinkler days, pet visits. Last night was movie night, and they put Aladdin on the big screen in the lobby and served the kids popcorn. As I write, I’m listening to the soothing sound of falling water from the fishpond in the courtyard, sitting in the shade beneath a Japanese maple while the girls play on the indoor slide with a myriad of new friends. Tomorrow we might walk over to Queen Elizabeth Park to play in the fountains and visit the conservatory, or to Douglas Park where they have an epic playground and face painting regularly. Or maybe Stanley Park, where we can feed the chickadees and wade in the ocean.

When we were stuck at home this past year, unable to visit my brothers who both live in this city, it wasn’t fair, either. 

Or maybe, it just didn’t feel even. Because we were comparing. Because at one point, we could. Because other people got to. Because we were looking at one thing, and getting another.

But in any moment in life, we are getting one thing and not another. We are doing this, not that. We are missing out on something, while doing something else. We are walking through one door, and not another.

Yes, no question, Stage Four High Risk Neuroblastoma is one bitch of a hand to be dealt. The whole deal – the length of our stay, the scary odds of the prognosis, the pain of the treatment, the stress on the family unit… there’s lots of excuses to feel resentment. To feel persecuted by the universe. But I don’t. Not at all. And I certainly don’t harbour resentment towards others for not being dealt this hand, nor for continuing to live their lives. No one is doing us a disservice by having their own pleasures despite our absence, or for experiencing their own suffering despite the depth of ours. It isn’t a competition, and in no way do we have a monopoly on suffering or misfortune.

And to be honest, it’s not all bad luck. In fact, there is so much good that has come out of this, it’s hard to keep track. Justice, if there is a such a thing, is always being served in one way or another, because the conditions of life are only the beginning. They are only the details, and the real value of things goes far beyond what we see on the surface. We are lucky – so lucky that it seems almost ridiculous to have to point it out. But in something like this, you do. You have to remind others (and yourself) that a diagnosis is a plot point on a storyline that goes on to develop into all kinds of meaningful moments and morals. 

I want my loved ones to still confide in me during these times about their own trails and tribulations, and share their meaningful moments with me. I want to see everyone enjoying their summer in Facebook posts. I want to be there for everyone I love during this time, not just for my daughter. I don’t want my world to shrink. And I don’t want anyone to feel responsible for keeping an even playing field for me. I’ve got that one under control, at least, in my heart.