Carly Ann Lomas passed away this morning…

Carly Ann Lomas passed away this morning, peacefully and without pain, in the Exeter hospital.

“The sonnet, the song, the book, the masterpiece you were going to create – the loved one you were going to hug, the friend with whom you were going to reconnect – the thesis you were going to craft, the school you were going to apply to, the country you were going to see, the dance you were going to dance, the garden you were going to plant: 

Do these things, live fully,

And know that it is possible to face your death with grace.” (Carly)

Never Go Numb.

Positivity and happiness are two very different things.

And I have consistently found that the first erodes the second. Relentless positivity actually damages my ability to experience joy.

This is hard to explain to people who ask me how I “stay so positive.” If I answer with a laugh –  “I don’t” – I get  a blank stare or even, occasionally, an argument.

“Yes you do,” the other person might say, as if I’m just being modest. Or “But you’re so happy.”

Somehow people have conflated that bastion of self-help, positive thinking, with happiness. The common thinking goes that positive thinking is the key to happiness.

I’ve found the exact opposite to be true: I entertain the worst possibilities, consider all potential outcomes, especially the worst ones, and I imagine what I’ll do in each potential situation.

Then  fear melts away and leaves serenity, a sense of optimistic preparedness, in its place.

I also allow myself to feel sad. I don’t bury my head in the sand. I don’t numb myself against the fears and pain that comes with a cancer diagnosis. If something bad happens, I acknowledge that it’s bad. I do this because when it comes to emotion, there’s no such thing as a local anaesthetic: if you numb one emotion, you numb them all, and if I ignore my pain I blot out my capacity for joy.

I’m a  joyful person because I let myself feel sad. I’m an optimistic person because I  envision  my worst-case scenarios and deal with each of them in advance. I feel prepared to take on the worst.

So when people ask how I “stay so positive” or how I’m still so happy, I’ll try to convey these two things:
Instead of determinedly ignoring the harshest parts of your situation, imagine them in advance.
Instead of refusing to cry or curse or scream when the fear hits you, let yourself feel it.

I try to be brave enough to imagine the worst, and I never let myself go numb.

What I Might Lose

• Nothing in my adult life prepared me for the steady onset of disability, but I’ve become an expert at handling new handicaps.

It was early autumn when I realized I’d lost the  left half of my visual field. Not just the left periphery. Not my left eye either. Let me explain. The condition is called homonymous hemianopia, from the Latin hemi (“half”) and anopia (“blindness”).
The condition is so abstract it’s almost incomprehensible. If you Google the condition you might see pictures like these:

This is Paris as seen by someone with my condition: the left side is invisible. The artist’s rendering is, of course, misleading: the left side is white, and whiteness is something, white creates a defined line between what’s visible and what’s not. But there is no way to paint invisibility, no way to depict or describe it. If I want to see the left side of Paris, I’ll need to turn my head, again and again, and patch it together with my memory, like looking at a city through a magnifying glass, brick by brick, taking in only a tiny bit at a time. Things would be easier if I could see a white line that lets me know there’s something I’m not seeing, because there’s the rub: if I can’t see it, I don’t even know I’m missing it.

Sports: Nope.
Riding a Horse: No.
Video games: futile.
Driving: Never again.

Many people with this condition can’t leave their houses because they’re unable to detect danger on their left,  like oncoming traffic.

Navigating my way through a familiar household – around chairs, tables, doorjambs, and so on – is an interesting venture when I can only see half of it. Walking itself isn’t difficult, but getting from A to B is. My left side is covered in bruises from collisions with everything from furniture to people.
So just to see if I could, I went for a run two nights after realizing I was half-blind.

I didn’t run far, but God, I ran. After half a mile I sat by a brook as the earth turned to conceal the sun and the sky lit up pink. The sight of it all soothed me.  Look at everything I can still see.

And  I found out that if the road is wide enough, if I’m careful, I can still run.

My eyes work just fine; they take in light, focus an image on my retinas, and that information travels to my brain. Just like anyone with healthy eyes.

Except as that information travels along visual pathways in my brain, the image is lost. My brain is constantly struggling to interpret data fed to it by my perfect, healthy eyes.

As fiercely as it tries, though, my brain can’t process that information.
My brain is Sisyphus forever rolling a boulder uphill only to watch it roll  down again, and like Sisyphus, it can’t opt out of all its useless hard work; it will continue to try, and continue to fail, for the rest of my life.

I still celebrate that I can still see everything to my right. I can still take in the details of my loved ones’ faces if I’m patient. If I search, scanning, I can pick up the whole picture, and it may never be as clear as it used to be, but but some of the picture is still there. If, from a certain angle and distance, I can still see my mother smile, I haven’t lost anything that matters.

It was mid-autumn when I realized that the left half of my body had gone numb.

Two weeks later I found out the tumour has infiltrated my corpus colossum, “which explains the numbness,” said my oncologist.

The left half feels the way your body does when you fall asleep on it wrong, or when it gets far too cold. It aches or keens, too, and makes me think of the phantom pain reported by amputees.

I dropped down and did squats on my left leg. I did weights with my left arm. Not just to exercise the muscles, but to exercise the parts of my brain that control them.

This tumour pushes me, and I push back.
It’s presented me with handicap after handicap.
I have dealt with each one.

I finally looked up what the tumour’s infiltration of my corpus colossum might do to me. My heart dropped just a little when I saw I might lose my ability to read or understand words. (It’s called split brain syndrome. The details don’t matter.)

What matters is that I still have the ability to read and write right now.
I have no patience for thinking about what I might lose.
Maybe later I’ll go for a run.

A Handy Guide For Talking to Cancer Patients

As I’ve talked with other cancer patients and their families about the weird and wonderful conversations we’ve had with others about illness, a list of faux pas has emerged.

THINGS YOU SHOULDN’T SAY TO CANCER PATIENTS (OR THEIR FAMILIES)

“Everything happens for a reason.”

This is the emptiest platitude, spiritual bubblegum, infuriatingly trite. It swats away a terrible situation as the means to some higher end. It inadvertently sends the message that a person’s pain is overblown or unmerited. Bottom line: It tends to make people feel belittled.

“I know exactly what you’re going through.” 

No. Even  two people with the same disease won’t have the exact same experience. Declaring yourself an expert on another person’s experience can make a patient feel frustrated, voiceless, or patronized.

It’s more honest and comforting to admit that you don’t know what that person is going through.

“Have you tried…?”

“The alkaline diet/ juicing / cannabis oil / thinking positively will cure you. Just look at this naturalnews.com article / YouTube video!”

You know who’s probably endlessly researched cancer treatments? A cancer patient. Often we never get to step off this merry-go-round of options, options, options: we’re dizzy from reading hundreds of pages of medical literature, juggling all the choices, and carefully curating a treatment plan that works for us. It never stops,and so weighing in, unasked, with what worked for your Aunt Agnes is probably unwelcome. Unless you’re asked explicitly, keep medical advice to yourself.
I mean, unsolicited advice is bad manners in general. Marching up to a newly diagnosed acquaintance and bellowing “YOU SHOULD REALLY BE DOING AYURVEDIC YOGA” isn’t just unhelpful – it’s rude.

“You’re actually lucky because cancer makes you appreciate life!”

Okay. Maybe someone’s bout with illness has made you appreciate life. Maybe it’s given you perspective. But declaring the afflicted person “lucky” is just insulting.

“Oh, you have [insert type of cancer]? I know So-and-So who died of that.”

AHHHHHHHHH.

It goes without saying that people don’t say these things maliciously. You mean well. You want to say the right thing. It’s just all so terribly awkward and disturbing. So what should you say?

GREAT THINGS TO SAY TO CANCER PATIENTS (AND THEIR FAMILIES)

I’m sorry. Is there anything I can do?

This  is perfect. Mix it up and use as needed: “That sucks. Can I help?” works! “Oh no. You’re in my thoughts” works too! “Well, shit. I’m here if you need me” is also apropos! All of these are versions of the same two statements: you’re sorry, and you’re available to help. That’s awesome! Yay!

I don’t know what to say.


You wish you could come up with something elegant and reassuring. Nothing comes to mind. Words fail you. If that’s the case, say “I don’t know what to say.” That simple statement is honest and  it shows  you care. It’s  appreciated.

She’s Not Dying.

Tomorrow I go to a hospital. I’m going to see the latest pictures of my brain: black and white scans on a computer screen, pixels loaded with implications for me.

Because tomorrow we talk options. “The tumour’s behaving like a glioblastoma,” said my surgeon a few weeks ago. It doesn’t look like we can wait anymore. Glioblastoma multiforme is the deadliest form of brain cancer. Median survival is fifteen months. No one survives.

Tomorrow I stroll into the cancer clinic, shake hands with my favourite oncologist, and he’ll lay my options out for me.

Which chemotherapy sounds best to you? There are plenty to choose from. And I’ll wade my way through treatment. Still, sooner or later, I’ll die. In the meantime, though, as cancer debilitates me, I am not dying.

I am living.

On Battles

They say I’m in a battle. That I’m a warrior. Sometimes I feel like that. The problem is that battles have winners and losers, and a warrior’s calibre depends on their bravery, determination and strength. Battles have endings, and mine only ends one way. If I “lose the battle,” that means I wasn’t brave, determined or strong enough, and cancer is not a matter of your character. It boils down to odds: will your particular cancer respond to a particular treatment? Flip a coin. It’s a question of probability, chance, sheer divine luck.

And my tumour is in my brain. Everything about me – my personality, my intelligence, everything – is located there. The tumour probably developed with my brain in childhood. It almost certainly shaped the person I’ve become. It differs from other cancers in that it isn’t just part of my body, it’s part of who I am. Rather than turn the tumour into a monster, rather than single-mindedly fend off death as long as possible, I prefer to live as vibrantly and joyfully as possible. I shift my focus from battling cancer to dancing with cancer. I don’t spend every waking minute trying to find ways to erase every cancer cell from my body; that’s not what beating cancer means. The only battle here is the fight to live gracefully, purposefully, happily. It’s as much a dance as it is a duel. If this is a battle, and cancer steals my pulse before Christmas, I’ll still have won.

If I’m 25 and still laughing from my deathbed, if I lived every day to appreciate the world’s beauty and change a little of its ugliness, if I strived for love and grace, then I won.

So tomorrow we talk options. Then, sometime, I’ll do more treatment. Sometime after that, I’ll die. Let’s hope it’s later rather than sooner, but either way, if it’s cancer that kills me and not a car crash or a serial killer or rabies (hey, even with terminal cancer, you never know), please don’t say I lost my battle.

I’ll win in the only way it matters, and I’ll be dancing on the way.

Carry On, Blind Girl.

After brain surgery, the world didn’t look quite right.

Something about my vision was peculiar. No matter how hard my eyes searched my surroundings, something was off. I couldn’t describe the distortion – it was harder to read, movies were harder to follow, and all the details of the world around me didn’t quite fit together the way they should.  It gave me vertigo. It was off-putting, disorienting. I hoped the eerie visual effect, whatever it was, would pass. It’s probably the drugs or brain swelling. Be patient.

Then I figured out what’s wrong: I have a blind spot.

Specifically, I have superior quadrantanopia. Imagine that your visual field, a rectangle, is divided into four quarters. I no longer have the upper left quarter. The entire upper left quadrant of my vision is gone. It’s a common result of damage to the temporal lobe.

The world doesn’t look right because I’m partially blind.

I don’t know if the part of my brain that processes the missing part of my vision is damaged or removed entirely. I’ll ask my neurosurgeon for curiosity’s sake. We’ll make an appointment with a neuro-opthamologist, who will determine the extent of the blindness and tell me if there’s anything we can do. If there’s anything I can do.

The literature suggests that rehabilitation isn’t possible.

But the brain is a miraculously adaptable organ; maybe, even if no one has done it before, maybe I can train my brain to see again. It’s not about what’s likely, it’s about what’s possible; it’s not about denial, it’s about hope.

Today marks two weeks since the operating table. Sitting in the kitchen last night, I told my mother about my blindness. I told her the news  matter-of-factly, almost meditatively, as though I were describing some interesting discovery  and not a handicap. She listened. There were no histrionics on either of our parts. Carry on. At one point I smirked. “It’s kind of cool,” I said, waving my left hand to my upper left, wiggling the fingers. “I don’t see it there. It’s like I have a ghost arm.” At another point, I growled, “Pisses me off. It makes it harder to read, and I want to take courses this fall semester.” She sympathized, made cocoa, and we smiled at each other.

We accept the challenge I’ve been given. We keep hope. We make cocoa and carry on. We don’t have to be blinded by our blind spots.

For You.

I am here, and by “here” I mean writing this (blinking through a haze of drugs and a scalpel-agitated brain, fingers occasionally missing the keyboard), but mostly, by “here,” I mean “alive.” 

 

I am not alive because of my personality. I am here for many reasons, and most of them arise from uncanny luck: I live in close proximity to the world’s best healthcare and every resource is available to me. I am fed, clothed, clean, sheltered, and that is just astounding luck. Having these things makes me a statistical anomaly – the vast majority of the world is denied it. It’s both indisputable and astonishing that I’m alive because I’m lucky enough to have these needs met. But that’s not the beginning, the end, or the middle of it.

No, I am here most of all because of you.

It is not courage that brought me here. My character has nothing to do with it. Every beautiful breath that fills my lungs is drawn from what others give me every single day. No matter how peripheral your role in my life seems to be, if you’re reading this, then you’re part of my fabric. I’m still here because you are. I’m still here because of the good jiu-jiu you sent me, the prayer you said for me, the love you expressed in that text message, email, phone call. I’m here because of that bouquet of flowers, that photograph you took for me, that flower you planted, the song you sent me. I am here, alive and writing, for so many reasons. I’m here because I have the outlandish fortune of living in southern Ontario in 2013, because my youth and relative health make me robust, but mostly I am here because of love.

It is so easy to feel impotent, powerless, invisible. You’re not. I am alive, and will continue to be, because of your love. I encourage you to express it often, love, to whomever you feel it for, even if it feels weird, even if it feels inappropriate, even if it seems useless or unreciprocated. There is no need for grand language, no need to fear sounding cheesy. Spread your light, your energy, your prayers, your mojo, your nondenominational good wishes, your smile. Love, baby, love. In the end, it’s the reason we all breathe.

I am alive today. Thank you – you – for that.

the world ends.

Brain surgery, 9am tomorrow. I’m writing this quickly. Less than ten hours from now, an anesthesiologist will be asking me to count backwards from 100. I’ll envision ships sailing into the west. 
Then the world ends.
And begins again.

The sonnet, the song, the book, the masterpiece you were going to create – the loved one you were going to hug, the friend with whom you were going to reconnect – the thesis you were going to craft, the school you were going to apply to, the country you were going to see, the dance you were going to dance, the garden you were going to plant: 

Do these things, live fully,

And know that it is possible to face your death with grace.

On Worry

I worry about the circumference of my thighs. Funny, isn’t it, when I could worry about the upcoming results of a brain scan which might tell me to watch and wait, start chemotherapy, have brain surgery, or die? I will not hear the results until June. That’s a lot of time to worry.

“Worry does not save us from tomorrow’s sorrow; it only robs today of its joys.” There is truth in that, but only to a point: a little worry can make you alert, make you act when you otherwise wouldn’t, and – yes – save you from a little of tomorrow’s sorrow. We worry for a reason. We fear for a reason. Worry and fear serve a purpose. But I cannot change the upcoming results of a brain scan.

And so I worry only about silly things, laughing at myself for it, and enjoy all the moments of my days. If you can, enjoy yours.

On Running.

If you’re trying to tackle something, be it a fitness goal or anything else, be determined above all else.

“Impossible is nothing.” -Muhammad Ali

It would be easy.

It was just under four months ago that I completed radiation for brain cancer. You’ll be tired afterward, they said. It may take you six months to feel normal again. You won’t have much energy. You might lose vision, have seizures, or just feel exhausted all the time. It might be hard to sleep.

These stark realities run contrary to the motivational quotes and armchair philosophy I see every day. “You can do anything you want to. Dream big. Veni, vidi, vici. The only thing that stands in your way is you.” It’s in social media, book titles, song lyrics: inspirational ideas that blithely ignore the fact that sometimes, what stands in your way is something much bigger than you. I find myself caught there, in the chaos where fact meets fiction, where slogans like “Impossible is nothing” seem like insults that dismiss everything about my condition. In that place, hope and denial are indistinguishable.

When I’m halfway through lacing up my running shoes and I suddenly lie back on the floor as a seizure slithers through my body, I might snarl at the ceiling, thinking of healthy people assuring each other that “Impossible is nothing.” Tell that, I might think, as the seizure runs its course, to an epileptic who risks her life every time she laces up her shoes. Pithy quotations like Muhammad Ali’s become harsh, tangible, in situations like these.

So there I am, my back on the floor, my shoes half-laced. Sometimes seizures come in clusters; I could be struck down by another one within minutes. I wait. My breath comes in little gasps. Any second.

A brain tumour can interfere with any and all physical functions. Sometimes I can’t get enough air. Sometimes my heart pounds for no reason. Sometimes there are flashing lights and phantom stenches; sometimes my left side feels markedly different from my right. But right here, right now, what’s possible? Can I finish lacing my shoes? I wiggle all of my fingers. My hands are still under my control. I sit up. I double-knot the shoes. I stand.

And then I run.

Running epitomizes something essential about life: what’s best for us is not the same as what’s easiest. I put one foot in front of the other because nothing benefits me more. I do it because as I redefine what’s possible for my body, it redefines what’s possible within the rest of my life. Running makes my world expand; it dissolves limits; it wakes me up.

Limits do exist; I rediscover them every day. But I can’t stop probing at them, pushing them outward as far as I can push them. It would be a waste. These miniature challenges, on a treadmill or a trail, morph into some of my biggest successes. It’s simple: I shouldn’t give that up.

Even though it would be easy.