Being Present with Neuromyelitis Optica
Last updated: August 2023
Since my Neuromyelitis Optica (NMO) diagnosis in 2014, I find it hard to strike the right balance between enjoying a bit of reflection and spending too much time with my head in the past.
Remembering life before NMO
I'll happily drift off into nostalgia, talk for hours about past experiences, and experience it all so vividly again. It's like I'm there watching the sun melt into the ocean off the west coast of Australia or feeling a Hebridean Island breeze brush my hair away from my face. I can smell the coconut scent of the gorse in the north of Scotland while I'm wheeling around a supermarket somewhere in the south. I'm so grateful for that intensity of imagination and memory.
However, it's all too easy to drift off into the past when the present gets a bit challenging. And it's not always positive. I'll ruminate over the time I had the strength in my thighs to run through sand dunes or had the strength in my arms to climb coastal rock formations. And that starts a cycle of "things were so much easier and better then."
It’s true, things were definitely easier. I'm not going to lie. The world we live in isn’t always accessible to disabled people. It doesn’t always accommodate our needs. That means that some of the things I want to do in life are impossible, or incredibly difficult at least. It's frustrating, so I don't blame myself for drifting off to easier times. But it's not always helpful.
Operating on autopilot
Sometimes I’m so far from the present moment that an entire day will slip by, and I feel like it didn’t even happen. I’ll realize I’ve had conversations I didn’t properly engage with. Perhaps it’ll surface later that I missed an important bit of information in one of those conversations. Friends will ask me why I’m so distant. I’ll be completely on autopilot, skim-reading my own life.
I’m in my mid-30’s now and I don’t want to get to 40 and wonder where the last decade went. I don’t want to feel like I missed opportunities to connect with places and people. After all, how can I create those intense memories if I’m not experiencing things in a fully present way?
Is mindfulness the answer?
One tool people use to help stay present is mindfulness meditation. I rejected the idea of mindfulness years ago when it was offered to me instead of proper healthcare. It was proposed as the solution to my chronic neuropathic pain before other avenues had even been explored. I was told that mindfulness alone would resolve my clinical depression. Every “health-guru” on the internet said mindfulness was the answer to all health conditions. It is not. However, I do believe it has its place.
Eventually, I learned more about mindfulness and discovered the benefits of being more present. I feel calmer, clearer, more engaged with the world. Well, when I’m keeping up with a regular practice that is! I experience things in finer detail and enjoy smaller moments more – the taste of my coffee, the feel of the sun on my skin. And now, I even believe that it’s useful in treating chronic pain and clinical depression, but only alongside proper healthcare.
It doesn’t take much of my time. Just 10 or 20 minutes a day is enough for me to feel a difference. I prefer guided meditation otherwise I’m guaranteed to go off on a daydream. Online groups are a great way to stay motivated with it because they help me get into a routine and hold me accountable somewhat. I’m glad that my life is no longer going by in a flash!
Has NMO impacted your ability to keep a job?