Page 51 of The Chemistry Test

Penny

Oh my gosh. I look at the clock for the fifth time.

Six minutes until the conference starts, and only a few more until I’ll be out there.

I’m going first so I don’t get too worn out waiting for the other speakers – and thank goodness, because I don’t think my nerves could’ve handled waiting any longer.

Although now the moment’s finally arrived, I don’t feel dizzy like I normally do during a POTS episode. My heart’s still thrumming in my ears and chest, but I don’t feel as unwell as I expected. Just ramped up and jittery.

I look around at the rest of the TEDx team and my excitement bubbles up again, threatening to topple me over. I feel like we’re being taken up to a drop tower at Disneyland, and the only way off is to come back down. And it’s terrifying. But also exhilarating. And I can’t wait.

The lecture theatre we’re in is even bigger than the campus cinema and there’s a muffled hum as the audience files in. I know my ears are deceiving me, but it sounds like there are more voices than seats. Seven hundred people are a lot louder than I expected.

Although the voices aren’t what’s scaring me most. What’s scaring me the most is the moment they stop.

When the only thing left to fill the whole auditorium is my voice.

And I know it’ll be (at least a little bit) weak and wobbly because I’m so tachycardic.

But that’s alright because even though everyone’s always said my biggest strength is my academic ability, they were wrong.

My biggest strength is not actually an innate talent or carefully crafted skill at all.

It’s my courage. When just living makes you feel like you’re at death’s door, but you keep putting yourself out in the world anyway, how could it not be?

And as anxious and shaky as I feel right now, I know I need to push through and go for it in case someone in the audience needs to hear what I have to say.

Or maybe it’ll be someone who’s watching on YouTube at home like I used to, so it’ll be worth a few nerves and possibly some embarrassment for that.

Although, now I’m thinking about it, maybe that doesn’t make my biggest strength bravery after all; maybe it makes it something a little bit bigger and a little bit more: to want to help just one person, at any cost. I don’t really know, but I definitely feel like I’m being brave right now.

There’s no backstage area since it isn’t an actual theatre, but I’m grateful Elias, at least, has been assigned to the other wing.

I told him to break a leg before we had to hide behind the curtains on our separate sides, but things have been awkward between us since I ducked away from him when he dropped me home.

I don’t know if I was ducking away from a kiss or just a hug, but it didn’t matter.

Because what I did know was that I didn’t want either.

And that instinct was somehow stronger than my urge to save face and play it cool for a second longer.

I wince just thinking about it, pushing the memory away as Fiona walks out on stage.

Holy crap. The silence is just as revolting as I imagined. And it will all be for me in a minute. I check the pulse oximeter again. It’s 152 now. Not good.

I try to rationalise with myself to bring it down.

The theatre only seats seven hundred people.

I have over fifty times that many followers online and I have no problem talking to them every day on there.

Literally, all I have to do today is share a glorified version of one of my captions or stories. Surely I can do that?

‘That’s all from me, so without further ado, let’s welcome our first speaker of the evening, Penelope Steele,’ Fiona says.

She beckons me forwards as she walks towards me, giving a subtle wink as we pass each other in the wings.

She’s only two years older than me, but she’s such a pro at this and the wink is oddly comforting.

The clapping dies down as I come to a stop on the white X marked on the stage.

And I know that if I can just get through the first few words, I’ll be okay.

But my mind goes blank, and I can’t remember what they are.

With time ticking away, my only option is to get started and hope I find myself along the way.

‘Hi, everyone,’ I say. The raspy texture of my voice takes me by surprise.

I practised this so many times, but never with a mic.

I try not to let it distract me, but I’ve completely forgotten what I’m supposed to say all over again.

I smile, wondering if what I’m about to do will break the fourth wall too much.

I’ve never seen a TED talk completely fall apart before and I’m acutely aware that there is, of course, a first time for everything.

‘I’m Penny and I have a disability – which you might’ve already noticed,’ I say, gesturing at my chair and doing a little spin.

‘In the chronic illness community, we have a term called “brain fog”, that we use when we can’t quite grasp the words we’re looking for, or when our minds go blank,’ I say, feeling the warmth of the spotlights caress my skin as I near them.

‘And despite the fact I’ve spent weeks preparing for this, I have a touch of brain fog right now, so please excuse me if I stumble or take a second to find the words I’m looking for,’ I say.

‘Because I have too much I need to say to give up now.’

The audience claps and some of them nod at me, spurring me on.

I instantly feel more comfortable knowing they understand, at least a little bit.

And I didn’t see exactly where it started, but some of them are giving me two thumbs up.

You’ve got this, Penny, they seem to be saying.

It makes me laugh watching the thumbs spread through the auditorium like a Mexican wave, and as I try to shake off the nerves, I feel my shoulders relax.

This whole situation is such a far cry from any I’ve ever been in before.

Where people were so quick to judge any sign of weakness, like getting the seminar questions wrong or getting covered in chai latte in a café.

Even though such moments couldn’t possibly amount to anything more than a mere speck in space and time.

Whereas here, through those silly thumbs ups, I’m reassured that I might not be doing the greatest job in this moment, but that doesn’t mean I won’t excel in the next.

They know I’m nervous, and are rooting for me anyway. I blink away grateful tears.

‘So,’ I say, taking back the floor. ‘When I became unwell with a mystery illness a few years ago, I vowed to myself that if I ever figured out how to cure it, I would shout it from the rooftops so that everyone else could get better too. Because unexplained symptoms are not rare. And you or one of your loved ones probably have at least one. But, of course, that’s not how mystery illnesses work.

There is no one-size-fits-all cure. So, I never found it.

And I never did get better,’ I say, tilting my wheelchair from side to side.

‘But actually, things have gotten a lot better for me. Even without it. And I truly believe that it can get better for you or your loved ones too, whether they find a diagnosis or not. So, I’m here today to share with you how you can get better from your mystery symptoms, both physically and mentally.

’ I stop and take a breath, looking out at all the faces.

I decide to focus on the ones near the front, which aren’t quite as blurry, so it feels more like a conversation.

‘So, without further ado, here’s everything I wish I’d known,’ I say, wheeling to the other side of the stage in case I’m being too static. I probably should’ve incorporated some movement earlier, but there’s just so much to remember. I start speaking again on my next stationary breath.

‘Firstly, I want you to know that just because all the tests have come back negative so far, it doesn’t mean there’s nothing wrong.

There are thousands of medical tests, as well as those that haven’t been invented yet, so even if you had twenty and the doctor said there’s nothing wrong, I want you to know that what they really mean is that you simply don’t have one of the twenty things they tested for.

’ I pause again to get my breath back, noticing how the faces in the audience are changing.

As I carry on scanning the crowd, my eyes rest on a girl with glassy eyes in one of the front rows.

‘And those negative test results don’t have to be the dead end they often become,’ I say.

‘There are so many treatments and options available for so many things, so if you want to, you can ask to be treated on a symptom basis until they can figure it out.’

As I speak, my eyes keep wandering back to a box of well-manicured people who are almost exclusively wearing suits and I try not to let it put me off, but I can’t help wondering if I really am helping any of them.

Successful people in suits don’t have secret, unexplained symptoms, do they?

And then, my eyes land on the anomaly of that row.

Someone in a red plaid shirt who’s nodding at me ever so slightly and giving me one of my signature thumbs up. CJ.

He’s here. And suddenly my talk doesn’t seem so stupid, after all.

Even to a group of successful people who appear to be fine.

Because everyone has their own set of struggles deep down, you just rarely get the privilege of seeing them.

Even successful, can-buy-anything-they-want movie stars like CJ.

Or happy-go-lucky artists with limitless creative talents, like Ro.

Or, I guess, even girls with brains like computers that never falter, even when the rest of their body does – like me.