How much does narcolepsy shape my identity?
There is something that I hear a lot when interacting with other people with narcolepsy, or in fact any chronic illness: “it doesn’t define me”.
While I agree on a basic level that a person can never be defined by their medical condition alone, I personally find it very interesting to think about the degree to which having narcolepsy has shaped my experience of life, and therefore affected my personality. It is undeniable that narcolepsy has affected the ways in which I interact with the world, with other people, and with myself. How could it not? If I was still able to do everything with narcolepsy that I could do without it, it would be hard to call it a disorder at all.
In my case, having narcolepsy during my teenage years had obvious impacts on my social skills, on my ability to study, and on my self confidence. I’m lucky that my own resilience has lead to considerable personal growth in trying to make up for these deficits, but either way narcolepsy definitely made a considerable impact on the ways I function in the world, in many more and less obvious ways.
Why does reading matter to me?
Years ago I gave up on reading books.
Throughout my childhood, I was an extremely avid reader. I started reading very young, and remember impressing adults with my ever-expanding abilities. I would read about anything, picking out books from the library on every topic. I still find myself remembering miscellaneous facts about plants and animals that I learned from books I read in primary school. I read fiction too, of course. I can recall taking long plane trips between Australia and England, racing through 3 books over the 24+ hours of flight time.
All of this reading informed the way that I speak and write, and even the way I think. It taught me to use language descriptively and precisely, which is one of the things that I feel really defines my personality, and one of the things that I like best about myself. However, over my teenager years, I got sleepier and sleepier… and the charm of reading starts to wear off quickly when you often fall asleep before you’ve finished one page.
In the years since, I’ve been a very apologetic non-reader… embarrassed by this gap in my intellectual repertoire. I’ve been so jealous of people with the ability to read, not only because “intelligent people read books,” but because I did a uni research project on the importance of reading actual physical books (as opposed to reading from screens) on the brain and understand the value it has in forming important neural pathways. But no matter how great I knew reading could be, I didn’t have the physical capacity to override my sleepiness, and so over time convinced myself that I wasn’t really missing much.
Over this period, I have become obsessed with podcasts.
Like actually obsessed. Ask my family or my housemate and they will tell you, rightly, that I often have a podcast on while in the shower. The podcast that sparked off this obsession was This American Life, which is far from unique amongst podcast listeners. I was exposed to one episode through a university lecture and immediately went back to listen through 400+ back episodes, deeply enjoying the way that this audio format could tell some very personal and intensely moving stories with the same feeling of intimacy that you can get from a book. That feeling that you are right in another person’s mind, experiencing their thoughts in action. Hearing from the perspectives of different people and exercising your brain’s empathy centres.
As a person with anxiety, I find that listening to the thoughts and feelings of other people (in podcast form) is generally preferable to engaging with my own unending loop of spiralling brain traffic. They help me to avoid becoming completely and utterly consumed by my personal problems, and remind me that I do actually have a lot more in common with other people than it sometimes feels like.
Slow change and building new habits
A couple of years ago during the summer break, I was listening to the podcast Chat 10 looks 3. It is hosted by Leigh Sales and Annabel Crabb, two prominent Australian journalists. The podcast is a candid conversation between the two friends about whatever they are watching, cooking, listening to or reading.
And this is why I mention this podcast in particular – because hearing these two women speak about the different books they’ve loved, and how these books have affected the way they think, forced me to recall the exact experience of reading a great book. And I missed it.
It was actually great timing because since starting Xyrem, I have actually been reliably awake enough to try again. Over the past few years, I have had the occasional conversation with friends where reading has come up and thought “Oh, I could probably do that now.” As with most things, I toyed with the idea for a while, never really making a commitment, until the aforementioned podcast struck me with the motivation to just dive back in.
So on Boxing Day two years ago, I grabbed a few books from my mum’s shelf, sat down, and read a whole book. Half that night, and half the following morning. The actual content of the book wasn’t anything special, but having that experience of being engrossed in a story was a very emotional experience for me. It felt a bit like connecting to a piece of myself that had been lost for a long time, one that I hadn’t expected to get back.
But then, I stopped. As usual, I was paralysed by choice and had no idea how to move forward. A quick google tells me that there have been approximately 5 million novels published in the english language, and that doesn’t even include non-fiction! How is a chronically indecisive person meant to handle that type of conundrum? I also didn’t know how to make time for reading in my life. I was working a full-time job, and along with exercising and socialising, that took up most of my time. Once I was relaxing at home, I would always end up wasting the spare hours scrolling through my phone, simply out of habit. A week turned into a month, and before I knew it I hadn’t read another book in two years…
During that time, I managed to partner up with my boyfriend, who is a much better nerd than I am and avidly updates his Goodreads account on a regular basis. He knows actual facts about culture and politics, instead of my scatterbrained mish mash of knowledge gained from podcasts and skim-read articles. While he’s too sweet and understanding to ever lord this over me, I was and still am quite jealous of his ability to sit calmly, learn and retain information in this way. I had been thinking about reading since before we met, but I can’t deny that his love of reading gave me some of the extra inspiration I needed to give it another shot.
Skipping forward to the start of 2020, I had a few days with nothing to entertain myself and I decided to take a big step. I’d been talking up my desire to read for so long it seemed like a joke, and it was time to take some action. I walked to the library, signed up, and chose a few books from the shelves. Even this felt like a bit of a revelation, as I hadn’t really been in a library for over a decade.
Only one of the books was intended to be read cover to cover (I also picked up an astrology book and a counselling text book to flip through). This book was called Upside, by Jim Rendon. I was determined not only to finish this book, but to read it in smaller chunks, instead of racing through like I had years earlier. I had to set up a sustainable habit, so that I wouldn’t feel overwhelmed like I was last time. This way, I could see myself making these smaller chunks of time available even when things get busier; as I step into my new job and my studies start up again next month.
Upside was a great book for me to read, not so much because of the writing but because the content was really affirming for me. The book discusses post-traumatic growth, the idea that while stress can be one outcome from traumatic events, many people experience that trauma can lead to positive life changes that would never have happened without the trauma acting as a catalyst. (I’m hoping to write a summary of the book and how it pertains to my experience with narcolepsy shortly…)
Now, I’m committed to the idea of keeping it up. I’m not a person who loves making goals, as they can be a bit of an anxiety trigger, but I figure the goal of one book per month for the year of 2020 is realistic enough to try my best! 🙂
Reading, narcolepsy and identity
If you were wondering why I introduced the idea of identity at the beginning of this post, allow me to spell it out clearly…
While narcolepsy is not life threatening, and does not rob us of our functionality in the same obvious and violent way as some other long-term illnesses, it has the ability to slowly rob you of the little things that make you you. The things that make your life feel like it is actually worth living. This reading issue might only be one tiny example, but it has had an impact not only on the way I spend my leisure time, but also the way I actually think about myself.
I’m not trying to throw myself a pity party here, as of course a person can live a good life without reading, and I haven’t magically changed my life for the better after reading one book. I merely wish to highlight the countless number of subtle ways that narcolepsy has an affect on our lives, and the fact that these can add up to quite a significant change in a persons behaviours and interests.
And it’s not just the sleeping. Many people with narcolepsy will find themselves avoiding certain activities and situations out of the fear of not being “all-there”, of embarrassing themselves or acting inappropriately while half asleep, even if that fear has never been realised. People who once loved sports are afraid of a sudden cataplexy attack taking them out, former cinephiles are unable to make it through an entire film. We can live without these things, but if we don’t find new hobbies or passions to replace them, we end up with lives that are lacking.
To finish up, I’d also like to call attention to the fact that it is only through starting on Xyrem that I have been able to make this change. I’m not here to promote Xyrem, and am always the first to point out how disgusting it is that there are so many people here in Australia who are unable to experience the life changing effects of this medication because of the extortionate pricing (we are not able to access help from any insurance or US-based financial aid schemes).
However, the fact that finding effective treatment can slowly bring back parts of our lives that had seemed lost to the fog really highlights just how much narcolepsy can take away from us. It’s been strange for me to discover how much I didn’t even realise I was missing.
I would love to hear some comments from other people with narcolepsy about how you feel about this topic. What are the ways in which narcolepsy has impacted your hobbies, interests or even your personality?