Life, like I constantly say, is a journey and like every other journey, it has got its fair share of twists, curves, bad patches, lonely stretches and quite a few ‘unprepared for’ events that occur. Most of us start out in life believing what we were told, not necessarily because we experienced it and so most times when we have our own unique encounters, it almost seems as though we probably might have been served a slightly garnished portion of truth. And then we go into those dreadful places where we think the isolation will take away the pain, but in all fairness, the process of living encompasses the good, the bad and the ugly. What we decide to run with will always be the choice we make, regardless of whether it was ‘an uninformed’ choice or not.
It is so seared in my memory, that I think it probably might show up on an MRI scan of my brain, the very moment when I was about walking into the consulting room of one of the most brilliant neurosurgeons in the world. I do not know if we each have those moments where everything seems to be perfectly captured in a still shot. Photography has always been and will always be a hobby of mine and where I defer from the modern world of perfect shots is in the fact that the best shots are captured when the subject is least aware of what is taking place. I do remember that was the very first time of ever hearing the words; “this is dystonia….it is a rare and incurable condition”. That I did not gasp was not about proper conduct or the presence of my kid sibling, it was me reverting to my default setting, applying sheer will and the relief of finally getting an answer to the myriad of questions that had been plaguing me
Till date, I remember the side glances, usually of pity as I struggled to teach myself how to still make the best of life. I still remember the words barely concealing their unbelief but very transparent in their lack of support when I really needed it the most. However we go through life, never really understanding why we pass through situations until it finally clicks that it was all in preparation for this moment decades after. Being the 3rd of 6 kids, I learned at an early age that being in the middle really puts you in a bit of dilemma – you are either too young to hang out with the older ones or too old to hang out with the younger ones. And so I learned how to make my life count for something that I would value as against attempting to fit in. This choice has actually made who I am and till date, it is a daily habit – choosing how to see a completely different perspective of any circumstance.
Nobody is born great, if you want to be different, you take the tools at your disposal and work at being different. That, I can assure you is not a walk in the park because in the park, everyone is doing something, some are seating, some are cycling or walking, some are feeding the pigeons but everyone is there for a unique reason and some of those reasons might conflict with yours or compliment yours. Now I am yet to ever go to the park because I want to engage in nothing, that is akin to saying that standing still makes time stand still too. It never will, and so every decision we make either propels us forward or drags us back. I have also learned that nobody can ever walk in your shoes and just like my daughter was telling me that her running shoes were getting tight, I have to choose to listen to her because it is about her feet and the comfort of wearing the right fit, besides she cannot wear mine anyway.
At the onset of this battle with myoclonus, I chose to read and digest every snippet of information I could lay my hands on, not for want of something to do but because I knew that choices would abound and so I needed to be ready to make the choices that would be for me not for my neighbor who could bound up and down the stairs 10 times faster than I would do in just one solitary trip. I learned that there was no shame in asking for help even though I struggled with pride and ego (two things that if not properly categorized would do you in). I learned that even though there were times I could barely afford it, I needed to make my regular appointments with the team of medical experts that dystonia calls for. I learned to listen to my chiropractor talk about new approaches. I also learned that if it walked for Nichol, when he gleefully talked about it in our National Dystonia Society meetings, it was not necessarily a green light for me. I learned that I needed to embrace reality in order to discover newer ways of doing old things.
As I write this, I remember painfully chronicling every head trauma that I had ever experienced. I was not resentful that of 6 kids, I was the only one who had been dealt this card but I would on occasions ask myself if my parents had missed something or I had downplayed the concussion I received in several unrelated events. Faced with such a barrage of questions, it sometimes felt that even though I pride myself a good swimmer, I was in waters that were too choppy to swim in. The ultimate question was what was I to do with this deck of cards life had handed me, continue to look for something to blame or look for newer ways of continuing on my journey. I realize now that the symptoms were always there but just maybe, I did not really understand my parents’ when they said ‘keeping an ailment a secret could cost you your life’ and that ‘hiding ailments is an exercise in futility because the ailment will not return the favour’.
Nothing emerges from the furnace unchanged, and so with every painful burn and relentless bouts of pain, I knew that there was only one person God had given the responsibility to call for a change in game plan – Me! And so the process of embracing dystonia began, not as I embrace friends but so that with each new day, I would continue to forge new ways to go on. I am thankful for the family that God has brought around me, thankful for the international calls, care packages and the best friend who might not be aware of how much of an influence the relationship has aided me. Honestly, being bull headed and direct is definitely not the panacea to every situation but for this battle, I will choke down the pain, stave off the waves of despondency that being in need always brings and just choose the perspective that gives me the opportunity to see the glimmer of light regardless of how tiny it might be.
I remember how it feels giving a baby his first bath at your hands, you just cannot give room to all the fears and doubts that anxiously await. Do what you have to do confidently because if you do fail then you have just learned another way of not doing it. My response to ‘how are you doing?’ will always be “it is a brand new day and for that I am thankful!’ and when events muddy up the water, I will find the strength to toss it out lest it festers and becomes more debilitating and hazardous to my well-being. When I stare at my medication holder, and wonder when it became a part of my dressing, I remind myself that time holds all seasons and this too is a season. When the bills pile up and the notices flood in, I remind myself that worrying is so much action but with so little relevant movement. Today is a new day, out with the old and in with the new!
Remember that the best gems are found deep in the dirt and so deep within you lies a treasure of inestimable worth, but you do have to do away with the sneering glances, the spiteful looks, the scathing comments and get it out because that is what is going to make your life journey more purposeful and meaningful to not just you but to every life that you are privileged to encounter.
פרידה עד שנפגשנו שוב בתזמון שלו, וייתכן שאהבתו של אלוהים להיות אמיתית לך!