How do you honor a hero who embodied the limitless boundaries of human potential?
A survivor of MS (multiple sclerosis) for 22 years, a brain cancer survivor for 8 years, a disabled crusader for human inclusion, universal access and social justice. There are few personal stories as inspiring as this:
When you are 29 years old it’s very hard to imagine you can’t tackle anything, or contemplate not being in control or believe you are not invincible. I was brought down to earth, in an unpredictable and earth-shattering way. Especially hard when you are newly married and have a promising career ahead of you. A life full of endless possibilities.
When you get ill, not just any illness, but Multiple Sclerosis (MS), while thinking you can conquer the world, the cold harsh reality of fears rapidly unfolding, slaps you in the face, it knocks you out like kryptonite. A chronic incurable disease with unpredictable debilitating effects and its progressive course is a blunt instrument for the strongest of minds You lose sight of who you are and your identity, because the immediate triggers that leads to your diagnosis, is a suffocating fog and haze. It led me on the roller coaster journey that sees me standing tall. Its indeed a process of discovery. unique in every way, like the MS’ undeniable effects, a snowflake disease, each person's unique, changing almost daily. This makes it one of the most complex by far of any illness I know…And I know. The worst was, I didn’t know what MS was at the time.
It was February 2002, 3rd week of that month. I remember it vividly. I played golf with my friend Shalin. It was a company golf day at Devonvale. It was a beautiful golf course outside Stellenbosch, approximately 50 km outside Cape Town. It was so unbearably hot I came off after 9 holes, yet I wanted to come off after 5 holes. It was 38 degrees Celsius. The heat was clearly not good. I would later find out how much.
The next morning my life would change forever.
I woke up the Monday morning not being able to see out of my right eye. Later I would find out it was Optic Neuritis, an early indicator of Multiple Sclerosis. This was confirmed by the Ophthalmologist who referred me to a Neurologist at Constantiaberg. I was put on a steroid drip to reduce the inflammation of the optical nerve, and then a lumbar puncture, which is a very long needle, which they insert into the base of your spine. They use it to draw spinal fluid.
Thereafter, I did my first MRI (Magnetic Resonance Image) which is an image scan of your brain. It's different to a CT Scan.Firstly/, it’s a more detailed picture of your brain and they inject contrast to highlight areas of the brain to show possible MS activity. I would later go on to have 27 MRI’s in my lifetime at the time of this article. I was formally diagnosed later that year.
I ‘fired’ my Neurologist in August 2002. His final words to me, “there are no treatments that I would recommend, and they don’t really work. Go live your life.” I refused to give up. I would try any and everything, but it had to be logical. All through this, my professional ambitions never wavered, despite wall surfing because of imbalance for periods of time, severe leg spasticity and crutches for almost 18 months. During the subsequent years my wonderful son Imran was born. He is now 10 years old. An all-rounder, great grades and a talented sportsman. My beautiful and caring daughter Rhana, is turning 7 years old soon. She is sunshine, artistic and loves drawing. This year she started ballet, pottery and piano lessons. My babies. I don’t want to die. I want to carry and run with them. That was my clarion call.
With MS, as unpredictable as it is, as unique as its course changes, mental fortitude is your salvation. At the end of the day you need more than being positive. Resilience. It’s an alchemy of love, faith and hope, and an unwavering belief that by living impactfully it would be enough.
But somehow, with me, life was not so ‘simple’.
In November 2011, I was diagnosed with stage 3 and stage 4 malignant glioma Brain Tumors. Brain Cancer. I have Brain Cancer and Multiple Sclerosis. My secondary impulse was I want to live. My impulse was for my spirit to soar. I obtained a gift of time, space and opportunity to embrace life, love, family, friends, meaning of life, religion, spirituality, my God, my maker, my life, my past. And live it forward. But I had and have my Darth Vader days. Yoda pops in most days. ‘Fighter, I am. Beat it I will.’ Star Wars speak. I survived 2 brain operations, several weeks of daily radiation therapy and chemotherapy, all while surviving Multiple Sclerosis.
But certainly, to beat what I had and have, was and is an obsessive mission, and at worst adapt and be audacious, and live. I knew I wasn’t going to get out of this world alive. Nobody will.
I took on everything. I enrolled myself with obscure online courses like Robotics or Creative Writing at Ivey league universities. I started amateur photography, gourmet cooking, DJing with mixing decks, reading everything on life, science, technology, religion, taking up fly-fishing, all with my left hand and arm. I am right handed which I lost use of during the onset of the tumor. And all to make it more of a challenge, my condition progressed into a Parkinson’s-like tremor on my right arm and shoulder. I was also on a rigid splint and flexible splint for my right leg for 18 months because of severe drop foot and muscle wastage due to tumor activity in my motor cortex. My MS prepared me for my life’s journey. Throughout, my spirit to keep striding has been unbreakable. In the words of my dear friend, mentor, coach and confidant, Sam, when I was diagnosed with MS, he said to me “You’re sick, not stupid”.
My life’s motto has been built on those words of motivation and inspiration. And heck, have I been sick!
Surviving Brain Cancer was the continuation of my life story. My MS. My Cancer. My Purpose. My Mission.The start of the story of Purple Cow Ventures. The story of Resilience. The story of Standing Tall. www.purplecowventures.co.za My gratitude. My mission and purpose to make a remarkable difference to fighters, survivors and caregiver organizations of Multiple Sclerosis and Cancer through sustainable ventures with high social impact.
Riad's Legacy is being continued by his widow Nazli Masoet, Rudi Visser, Crystal Herboth and the Team.