13 mars 2023

I sat next to a man this morning who spent some time expressing his thoughts on youth today, finishing huffily with “And I have cancer, boy-o.”

At first I thought Man, you’re one of those guys. While rolling my eyes. Because it seems to me that when someone expresses an opinion, a justification of why their opinion is correct is also always presented. In this case, this man’s issues with differing opinions than his own were dismissed because they were wrong, but also, his life experience clearly outranked anyone else’s because he’s doing all his living with cancer.

And then it occurred to me that so often, we are all so angry and frustrated and believe everyone else has it so much easier than we do because we assume we are the only one struggling.

Wouldn’t it be better if we assumed everyone was struggling with something? Because it gives grace, but also and more importantly (and most likely) it’s true.

It *would* inherently mean that we would have to acknowledge that our suffering is not above and beyond, that we are not inherently superhuman for managing to human while *also* dealing with our personal maladies.

***

I go back and forth on toxic positivity and ableism. I’ll own absolutely that as a person with a chronic illness, who sometimes struggles mightily to walk, I’m absolutely an ableist. I know this because every time my aunt talks, I hear again and again what I grew up with, and I realize that un-learning that will be a lifetime effort for me. A few weeks ago, she casually accused me of ‘loafing around’ as though managing my energy and my ability with my MS equated essentially to laziness. And as much as it stung (and as much as I haven’t gotten over it) I know that in her world, as in the world of my British grandparents, not being in motion implied without reservation, that I was being lazy. (Side note, I was actually taking Eli on a walk, so I wasn’t even home — but she assumed since I wasn’t visible, since where I was and what I was doing wasn’t immediately accountable — that meant I was off somewhere being lazy).

When I think of my family – particularly my mother’s side of the family – I feel sad because all we’ve ever done, my whole life, is present a ‘public face’ to the world while keeping our trauma and our hardships efficiently and resolutely hidden. Health issues, emotional struggles, life hardships – no one talked about any of it and when I finally got wind of something, it was sometimes years later, after everything was over and done. And even then it was whispered about it a shameful manner.

What a disservice that was to my mother, to my father, to myself, my brother. When I was diagnosed with multiple sclerosis I don’t remember talking about it openly at all (to be fair, my mother had also recently been diagnosed with stage four cancer). I grew up with a cousin whose illness was never discussed (I learned last year that she is bipolar. I’m 43). My grandfather’s stay in a hospital when my mother was young is still hazy — was it for PTSD from WWII or was it for alcoholism? I couldn’t tell you. It was probably both. My family is cagey and in-direct. And so, so British.

***

Anyway. I think my point is that every person is struggling with something. We have been fed a toxic lie of perfectionism that just doesn’t exist. And it never, never did. So we are all trying – in our own ways – to be something that is completely illusive. It isn’t real.

What I like most about how I deal with my MS now is that I’m pretty open and direct. I don’t have to remember who knows what because nothing is a secret (although I rarely tell my MIL anything because by the time she’s done telling the whole family, I’m dying tomorrow and it’s unlikely they will ever see me again. Which is its own, special kind of exhausting).

Today I’m sitting at Fox Chase Cancer Center. Hubs is having a tumor ablated. I’m listening to Andra Day’s “Rise Up” on repeat (I’ve done that for both his previous surgeries and it works for me). My legs are shitty – that’s what happens when I’m stressed out. I worry fleetingly about what people here are thinking of my stilted, teetering walk, and then remind myself that they have their own burdens to carry (it’s a cancer center after all).

Two more hours and hopefully I can see husby.

Xox, g

Leave a Reply

Your email address will not be published. Required fields are marked *