It’s the day after pushing go on this website.

Last year (September 2024) I gave a talk as part of the awareness raising that goes on for World Narcolepsy Day. I had been selected to speak after taking part in Rising Voices, a programme run by Project Sleep. The purpose of the programme was to become an educated advocate for awareness of sleep conditions. The programme facilitated and mentored you, as you constructed your ‘story’ of your own journey from diagnosis, awareness and management to what living with a sleep condition looks like for you today and into the future.

Anyway, I started writing my story, without knowing I had a story. I had never stopped to consider that what I was living with had some noteworthy moments. Or, that these moments had some tough bits. Or that I had been grappling with all kinds of things over the years, without acknowledging that narcolepsy might be playing a part in how I was feeling.

I thought I was all aware. I was not.

For example, I enrolled in a PhD programme – not the easiest or, let’s be honest, the smartest undertaking for anyone. It’s a frickin rollercoaster ride and a demanding course of study. It puts heavy demands on your time, your brain, your ability to manage a massive amount of information, and a deadline that usually means the money supporting you has run out. It taxes you mentally but also physically, and emotionally it can really mess with you too. (See, doing a PhD is not the smartest idea out there).

But guess what this human right here was thinking? That’s right. I can do it!

Not only I can do it – but – wait for it, I can do it at the same level, with the same expectations, pumping out the same amount of work, as any other person (without narcolepsy). Because I’m strong and resilient and tough, right?

Except, guess what, I have narcolepsy. Oops, little piece of well known info I just conveniently keep leaving out of the equation. So it DOESN’T MATTER how strong and resilient I might think I am, my sleep condition still exists. Still has all the power over whether my eyes can stay open long enough to type this sentenc…zzzzzzzzzzzzzzzzzzz…

Anyway, there were many examples just like the PhD one dotted throughout my tough, resilient little life. However, when I signed up to participate in the Rising Voices programme, I had no idea this was going to be a significant experience for me – both cathartic and serendipitous. Or that a sleep lab would be born in its wake…

The very first session in the programme got started, and one of the first things we did was go around the room and introduce ourselves. As people were talking, it hit me. I had never, ever been in a room (virtual or physical) with a whole group of people who also had narcolepsy. I had never had the experience of being around a group of people who “got it.” It was really powerful. I hadn’t been prepared for how that would make me feel. I had read something in the programme introductory stuff that said this might bring up emotions for people. Yeah, well that was something of an understatement. I had no idea I would have these deep feeeeeeelings continue to wash over me while I participated in the programme.

Have you ever had an experience where you click with something – or someone? You all of a sudden realise this connection was missing in your life, but you didn’t know it wasn’t there until it was. This was that. There was something amazing about being around other people who were also living this funny, interrupted, dreamy, disappearing life. A sleepy life that is in many ways invisible to most people.

It wasn’t just me! I wasn’t alone in this stuff! I wasn’t the weird one trying to explain why I just collapsed to the floor in a heap or fell asleep at lunch, mid-chew. Other people did this stuff too.

While I was working on my story over the next few weeks, my partner would come into the room to find me crying over other people’s stories or my own memories of living with narcolepsy and trying to piece things together into some kind of story. It was weird and unexpected at the time but reflecting on it, the flow of feelings were deeply freeing and cathartic. I had been given permission somehow to own my sleep baggage and truly accept that I had a sleep condition – surprise, not surprise.

It was also serendipitous. I had been trying to ignore my sleep condition all this time to live a “normal” life (see, look at me, all normal and asleep slumped mid-stairs at 10am. Nailing normal, for sure.) For years I had viewed narcolepsy as something preventing me to live in a meaningful way. It was a hindrance and an unwanted weight and something that ultimately stopped me from being me.

After presenting my story, I had this profound realisation that I had something to offer – and this something wasn’t in spite of narcolepsy, it was because of it.

Sleep colours just about every aspect of my life. I live and breathe this stuff. Instead of thinking of it as an affliction, perhaps it was a gift. What if my years of living and learning with narcolepsy, years where I had to develop ways to live a functioning and healthy life, to manage my sleep, and to test out the most effective ways to maintain energy, what if, if, if, it just might be valuable to other people too?

Imagine that!

And I did.

And well, hello! Thank you for being here with me as the journey continues.