People of Determination

Grit and determination is not a skill that can be taught.   it’s a trait,  a passion for a particular long-term goal or end state, coupled with the motivation to achieve the respective objective. This perseverance and effort to overcome obstacles and challenges that lie on our paths to accomplishment, serves as a driving force in achievement of the goal.

I have always recognized this as one of my core traits,  relying on it for success.  It allowed me to work through a successful career with the world’s leading Real Estate developer on some of the most prestigious projects in the world,  got me through my first successful Dubai marathon 4 years ago and allowed us to negotiate one of the largest insurance claim settlements in the shortest time frame for a building ravaged by fire.  Now, I need to keep this trait focused on me.  Grit and determination when the change process is clear and the end result will be beautiful and tangible, ( no matter how often change occurs ) is straightforward, focusing when change and loss are continuous and the end state is one you would like to avoid. This is far more challenging than anticipated.

365 days ago ALS invaded my Motor Cortex like a well trained sniper and slowly started to pick off neuron by neuron. At first the loss of clusters of neurons was a manageable inconvenience.   Undeterred, I went about managing the smallest changes.  Determined not to allow these to define me, I focused on work, family and strength.   Adding a walking stick allowed me to maintain mobility, adding medications kept the emotional incontinence at bay, allowing me to continue pursuing my passion for development.  It wasn’t long before larger clusters started to be decimated, leading to more loss. A walker rollator was acquired, and with determination, life continued. All the while, the snipers range and support increased.  To stop the enslaught, we deployed a weapon of mass destruction (good thing Bush and Blair are no longer in power), Edaravone.   A relentless assault ensued, 20 days on and 10 days off.   The only problem, unlike WMD,  the results are not evident and the loss continued.   The ability to sketch (which I considered my 3rd language)  and write neatly was the next to go.  My primary language to communicate with Architects and designers was eradicated over night.   Never mind, I still had a strong command of design language and vocabulary – or so I thought.  During a design evaluation one morning, I started to describe what I wanted, “dawzdecozpan aaliggn wihdde cownsep.”  Silence!   Thankfully one of the team members understood the code and to the relief of the others translated it.   The use of a smart phone or laptop with clumsy fingers as a means of communication was also impossible. It was once again time to summon determination and start using an augmented communication device, the voice that defined me for 46 years was gone forever!  Excitement, anger, intimacy, spontaneity, all vocal emotion gone! The more incoherent I was the more quizzical the expressions would be, followed by ‘uhuh, sorry can you repeat that. ‘   A clear indicator of misunderstanding. Thanks to determination of others before me the Tobii Dynavox EyeMobile Plus coupled with innovative software will allow me to continue communication, albeit void of vocal emotion. A desire to lead a healthy independent life was still kicking and screaming inside.

Naturally the decimation of neurons was not selective and could not be controlled, the reality is that it is so random that the symptoms and cause for determination are always changing.  As a result mobility was now down to a clumsy unbalanced square dance with 2 or more partners, every action now required 2 or more willing participants. A trip to a mall usually resulted in some poor unsuspecting passersby being roped in to assist in lifting my heavy frame from wheelchair to Jeep.  Wheelchair was now fast becoming the permanent mode of transport.  With clumsy, failing hands and weaker arms the only viable option is an electric wheelchair, roll in the Quantum Edge I-Level Or Zoom Zoom as we now call it. What it should be called is “Megaladon!” Weighing in at 130 kg, and 150 cm tall, it poses a set of its own challenges. Transportation! A customized van with a rear hatch or side door high enough to accommodate me in the chair will be needed to get around.  With determination, we set out to resolve the next set of challenges. Yet again, DETERMINATION is required.

Recently, His Highness Sheikh Mohammed bin Rashid Al Maktoum declared that people with special needs will be referred to as, ‘people of determination.’ The intention is clear and admirable, however, over the last 365 days living with continually changing special needs, I have been allowed to reflect on this.  Determination and Grit are such strong, almost aggressive, singular descriptions that we almost forget about others. The reality is, that an army with determination, is required to manage change and the challenges that come with it. The person of determination needs to display traits of courage, empathy and most of all resilience, grace  and understanding. I’m not saying we need to become Mahatma Gandhi, What I am saying, is that I’ve realized that with out these traits, grit and determination promote self preservation. Combined with the other traits, I becomes the We, singular becomes many, and no amount of change is difficult to manage. I wish I’d learnt this earlier in my life. If I had, change would have been managed better. All that is left to say is thank you to my army! Together we will fall down seven times and stand up 8. (Thanks Craig)

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