How do you find a sense of belonging when you deal with uncommon or rare issues? How do you reconcile disabilities without losing your sense of self-worth? Are you selfish if you don't stay and try to fix a broken system? We recently returned from a trip to the United States. Part of the reason... Continue Reading →
I almost wished away the greatest part of me
There was a time in life I would've given anything to be "normal" (as far as I'd seen from those around me). However, having unexpectedly found myself in the rather unique position of becoming a father—with disabilities (Charcot-Marie-Tooth, Tourettes syndrome)—to a son who also has a disability (Down syndrome) has taught me that I almost... Continue Reading →
Let’s talk about grief
A lot of people associate grief with the death of a loved one. But I'm here to tell you that grief can also look like this: Seeing part of yourself slowly disappear at an unreasonably fast rate without explanation or means to fix it. In my case, during my late teens, I started losing the... Continue Reading →
Running at the speed of life: With disability as the norm
Let's get straight to the point here: having a disability doesn't mean you are completely helpless. It simply means that you are having to learn and do things a bit differently from those around you, and that's something I have come to learn is not a failure. On the contrary, it makes you more creative,... Continue Reading →
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... Continue Reading →
Learning to walk with a degenerative neuromuscular disease (CMT Type 2)
You know how they say you never forget how to ride a bike? Well, I do, every day. Using my muscles --particularly my leg muscles-- has been a challenge practically all my life, but even with minimal amount of muscles, you can learn to walk. Only thing is that you have to learn it again... Continue Reading →