Do you think there are things out there that you are passionate about and are supposed to do, but for some reason, can’t seem to do it no matter what?
Well, I decided to share my story here in the hope to inspire whoever is reading me to go do the things they love, the things they believe in no matter what life throws at them.
I’ve always been called by my entourage the clumsiest person and to be honest, it’s been kind of fun and funny too. We’ve had blasts of laughs around my clumsy moments. However, there was something bigger hiding behind all that…
Numbness, imbalance, clumsiness; This time, those sensations were not linked to a panic attack, skipping a meal, or a clumsy fall that usually makes everyone laugh including me. This time it was different.
“What is wrong with me?” I asked myself after experiencing the above repetitively. “Should I ignore?” I wondered. And while that was the plan, sticking to it was unreasonable as I had my first incident in 2009 after my feet went absent for a little while. Scary feeling to stop feeling I must tell you.
Doctors consultations, CT scans, tests. Well, those cannot be pleasant, can they? After 10 years of several different diagnoses, finally, my doctor, who was highly recommended by my dad, diagnosed me with Charcot- Marie- Tooth disease (CMT). It sounds kind of funny and light right? So I googled the disease to know more and boy how serious and heavy that turned out to be. I discovered that CMT is a group of inherited conditions that damage the peripheral nerves with no treatment. While my doctor was doing his best to reassure me, stating it was a progressive disease, all I could think of was “Why me”? “Why is life unfair and heart-wrenching?" Yes, it was tough finding out... It was harsh accepting the fact that my old life was slowly shifting to a whole different pace. To me, it was ironic that someone as active and energetic as myself could be affected by this rare disease.
I was in complete denial for a couple of months and tried to continue my life by ignoring my symptoms as if nothing happened. After a while, I realized that CMT was here to stay, so I decided to face it and transform this chronic long-term hidden disability into positive energy.
On another hand, despite how much it sucked having your friends or sometimes even strangers ask you “What’s wrong with your legs?”, “Why can’t you walk faster?” or simply “Are you ok?”, I wasn’t going to let it determine the person I am. I started swimming four times a week, walking differently so I could hide my weakness, learning to write with my left hand, and going for physiotherapy sessions twice a month. However, all these weren’t enough,
I had to do something about it, and something nice to raise awareness and transform this chronic long term hidden disability.
So one day out of constant bitter daily pain in the legs, imbalance & clumsy walks, not to forget sleepless nights and unusual cold to hot sensations, I came up with the Socking Clumsy concept. I wanted to give my disease a colorful touch and to make people’s feet happy, feet being the source of my symptoms. We also know that feet are what can keep you warm or cold, and given the tendency of my own feet to go dead from time to time inspired me to act upon it.
In order to reach my goal faster, I reached out to arcenciel, a well-established Lebanese NGO that supports various causes. We have joined forces and decided to create a wider awareness and build support groups for this disease. With every sold pair, a portion of the revenues will be given away to support CMT patients.
What if life socks sometimes? Well, you will have just to bounce back on your feet!