Special is the new normal

One of life’s biggest ironies is that everybody wants to feel special, but be normal. If that doesn’t make any sense to you, then please allow me to elaborate. For as much as people do their utmost to stand out among the crowd through fame, money and the things they possess, deep inside there’s always a longing for normalcy. Because, not feeling a sense of belonging makes you feel rather alone, and nobody wants to be alone. You may or may not agree with me, but ultimately, we as humans feel most at ease when we have peers who understand us and whom we understand, on a deep level.

This year, and, really, the entire COVID-19 era, has been exceptional for me in many ways. Not exceptional in a bad sense, but because there have been so many good turning points. After so many hard years battling mental and physical health issues, it’s amazing that a pandemic hasn’t stopped the many positive changes in my life (and indeed might even have been a catalyst). Many of my struggles you may have already read about over the years, if you’ve followed me over at my other blog, but one particular thing was always oddly left out: my physical disabilities. And that’s, of course, because I didn’t know what was causing my severe atrophy.

A whole crowd of people like me came into the light

It’s not like people around me and anybody for that matter had managed to miss my oddly shaped legs. And because of that, hiding them was the best solution I could come up with to feel normal. But deep inside, I knew I wasn’t normal, because everybody else looked different. That is, until this year, when I got the diagnosis CMT2 (Charcot-Marie-Tooth type 2), caused by a mutated SORD gene. Upon finding out I wasn’t alone, it was as if a curtain was opened and a whole crowd of people like me came into the light. Like, how had I lived on this planet all this time with all these others who also struggle with the same things as me?

Suddenly, my weirdness wasn’t so weird, and that, oddly, made it feel special. It felt special, yet so normal, knowing that I hadn’t imagined it all, and that there was a perfectly logical explanation. In fact, being able to put a name to a disease is crucial in being able to accept it. Without words or names for anything in life, it becomes a struggle to even conceptualise anything, and so also with my CMT. I know some people hate diagnoses, claiming it makes them feel abnormal, broken or pointed out, but I personally disagree. Getting a diagnosis –a name for something– can be very important in figuring out who you are and that you are not alone, as that opens up a whole new world of understanding and knowledge. Being able to say “hey, I understand what you go through–let’s get through this together” brings us closer to each other, and that’s the sense of normalcy and belonging that every human being ultimately longs for. Unity.

That monster I had fed for so long was slowly starting to starve

So, this year has been very special for me, because in finding about about my CMT, it has completed a puzzle that was incomplete for so long. I already knew about my childhood traumas, my social anxiety, OCD, and my Tourette’s syndrome. Now I know why my legs look different and don’t work the way they work for most other people, and that’s liberating. It was so liberating that this past summer, I went out and bought the first shorts I had bought in a decade, and started walking outside with my CMT legs in full view of anybody. Was it scary? You bet! After so long hiding this part of me, because I was ashamed, it wasn’t like I was suddenly going to walk in shorts down a catwalk in a Paris fashion show. But, the voices in my head, the shame of feeling like I had done something wrong, and old hurts, were suddenly starting to fade. That monster I had fed for so long was slowly starting to starve.

If you follow me on social media, you will notice that up until this year, you’d be hard pressed to find a single photo of my legs or me in shorts. Yet here I was, suddenly and even without occasionally thinking, posting photos with my legs in full view. Those skinny legs I like to call my chopsticks–the chopsticks that have taken me from the streets of Rio to the Great wall of China, to the pistes of the Pyrenees and to the depths of the Mediterranean–are no longer a reminder of all the things I have lost, but rather a testament to my deep-rooted determination and sheer willpower. Yes, it’s taken me a great deal of additional effort and pain to do all those things, but that’s not for lack of trying, but in spite of my disabilities.

With this, I hope I can inspire many more to never give up, no matter what hurdles life throws at them, and to not compare your achievements to those of others, because for some of us, walking is the new running.

Do check out some photos from my many adventures!