Meet Chris….

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Meet Chris

Even as I try to chronicle the significant events that occur in the unceasing challenges of living, especially with dystonia, I still find myself deviating on each post towards something that is particularly pressing and in dire need (hopefully) of one other person besides myself. I mean it really would be something akin to the seer who has built a reputation on her abilities to receive flashes (usually in the oddest of places and times) if every time I posted something, it was entirely about an event that happened to me. That right there is one of the main issues I have with the term ‘blogging’ because with the dynamics of today’s world, quite a significant aspect of our words and actions are a far cry from their intended definition and use however that cannot be a deterrent until I choose to allow it become one.

I literally have already had a few eureka points regarding the absurd difficulties that the simple activity of sleeping has become and though I am yet to fully expound on that subject, it usually features a bit in some of my more recent posts. Now, do I write in order to be understood and accepted? The unequivocal and time-tested answer is NO! because I really am not into, never have for as long as my memories can go back, the whole gamut of being a part of the crowd of pressed bodies on the proverbial ‘band wagon’. Oh, and I still am not of the school of believers that proclaim, ‘if you cannot beat them, then join them!’ because it sort of demystifies the whole point of being yourself in a world that consistently wants to make you someone else. I still maintain that being told ‘you are different!’ is till date one of the best complements an individual can get. However in the light of today’s skewed thinking, abject nonchalance and indifference (craftily concealed with the word; tolerance) I want to emphasize that the difference being referred to is based on the fact that there is just only one of you and that God has lovingly crafted you in His Image and endowed with a unique set of skills, a heart unlike none other, experiences that hone those skills, a personality that is distinct (a mash up of family background, environment and inherited genes) and spiritual gifts.

I remember dashing to the comic-book sections in supermarkets (malls) as a child whenever I accompanied my mum on grocery runs, and it may sound funny but the whole goal of dashing there was to try and read the latest ‘Archie and friends’ or any of the Marvel comics. Was I usually able to finish the entire comic?….uhmmm not quite, because inasmuch as I still detest shopping till date, I usually ran out of time either because having my mother search for me after she was done never had a happy ending or that there simply was not just enough time and I knew better than to ask if it could be included in the shopping cart each time. And as was and still is the way of life, there will always be a newer version, a newer edition, a newer model and so trying to keep pace with the new editions was simply pointless and is still is. In all truth, trying to keep pace with the technological changes is an exercise that could literally drive one insane regardless of how affluent you may be, how brilliant you maybe or how much invention ideas ricochet in your brain and blood/genes. One of the wisest to have ever walked the earth, King Solomon was conclusive on this subject, “Vanity upon vanity, all is vanity” and I do not whole-heartedly put that in based on a whim but based on the actual experiences of a king in the long checkered history of mankind who lacked neither the warmth of feminine companionship or ever faced the bleakness of looking at an empty or rapidly diminishing contents of a bank vault.

I choose to be thankful for every new day regardless of how bad or great the night before was, because I honestly am living my life on the basis of certain fundamental beliefs and so it does me no good if with all the troubles going on, I make the wrong choice of starting each day being grumpy and irritable. I get to suffer the consequences of doing that and not only do I negatively impact myself but I also spread more negativity in a world that is already brimming with so much chaos and unhappiness. Yesterday was one of those days where my resolve to be thankful could actually be embodied. I love driving and so it is not really that great a deal if someone nicely asks me to perform a driving related task – cue in Christopher from Indianapolis! I happened to be around a shopping mall, actually a very large shopping mall and the only interesting place in a new suburb, when I got a text asking me to kindly pick up Christopher from a non-American restaurant and drop him off at his home. I have over the years learned that discernment is a gift because without utilizing that gift, you stand the risk of being a nuisance in the guise of trying to initiate a conversation (even though I usually opt for just being left alone, I now know that concern and care for another can be subtly expressed through a conversation even when I really do not feel like having a conversation).

And so in the course of another good day, I obliged and picked up Christopher and we actually got into a beautiful conversation (not a monologue) – remember, at every point in life, we are either teaching or learning. What really sparked off my interest was the context of the text he sent me, “I am blind which means I will not be able to see your car……” that by itself told a great deal because most times we feign ignorance of reality and believe that we can move on. Acknowledging reality and accepting it as your life are not merely a play of words, they determine whether you react or respond to everyday issues. My interest was not that he was blind or the presence of his cane (I have several canes myself) and being a champion over dystonia, I know that when pity is expressed as a pleasantry either in greeting or introduction, it really irks me because I am simply just living my life and I know that pity parties are not beneficial in anyway to anybody. Of course, I was interested in his story and amusingly when I asked him what his story was (behind every success lies a story), his response was epic, “I am blind!”. So here, kindly permitted by him is his story:

just living my life

At the age of about 18 and on the verge of graduating as a Chemical Engineer from one of the few schools for the exceptionally brilliant in Indiana, he started having headaches and issues with his vision. Those symptoms prompted a routine visit to the hospital where it was discovered that he had a grape/tennis ball sized tumor in his skull and that was literally squishing his brain and therefore prompting all those outward signs – again there is always more to life than meets the eyes.

After the barrage of tests following such an observation, it was inferred that the tumor had started growing when he was 10years old and had continued growing undetected until it had become such a size that it was now literally life- threatening. So of course, he had to undergo a major surgery to get the tumor out but then the damage had already been done – his vision was irreparably compromised. He had to go through the whole 9 yards of disbelief, post-op depression and having to make a choice of either staying down or getting up and learning everything anew – he chose the latter. Due to the major surgery, he missed a year however his younger sister was just a year below him, also studying Chemical Engineering and so they moved in together when he chose not to quit and therefore he had both the essential emotional support and the academic support (note taking, class attendance etc) of his sister. With the added benefits of attending a gifted school, he was able to complete his undergraduate studies and continued right on with his Masters program. As is the case, he had chosen to prove to himself that he would not be a victim however parents would always be parents and therefore he also needed to convince his parents that he was capable and so unknown to his parents, he declined the usual offer of riding with a classmate to a mid-point where his parents would then pick him up. He found his way to the bus station, rode the bus all the way to Indianapolis and took a cab to the house, to the utter surprise of his parents and that effectively alleviated the concerns of his parents. Along the way, he lost his father to cancer, even as he had also decided to push the boundaries further by getting his doctorate.

Unfortunately, his school did not have provisions for running a doctorate program and so he persevered until he was able to get the attention of an alumni who was on the academic staff at Rice University, Houston. Along with her recommendation and his results, he was eventually offered a place in the doctoral program at The Rice University however this was even a much more significant change because it was a completely different city and largely unfamiliar. Nonetheless, he had a distant relative in Houston who he decided to use as an emergency contact but life is nothing without challenges and so because of the move, he had to get documented as being legally blind, obtain the white cane and engage the services of a mobility tutor. With time, he learned how to use the white cane to navigate and move around and so 15years after the major operation to remove the tumor, he sat riding with me, sharing his story with me whilst headed to his own residence where he lives alone, does his laundry and all the other activities related to everyday living. As we swapped stories, he remarked with a wry smile that he does get the same “you are such an inspiration!” but for once (in my case, quite thankfully), we both agreed that all we do as individuals living with disabilities is simply just living our lives as plain and simple as every other person who makes the choice to live does. With a firm handshake, after getting his permission to write about him, I watched him make his way to his home after having an evening out with a friend.

Now this might come across as long winded, however I believe that as you read this, you will completely understand that none of us are born as superheroes but our responses when we get knocked to the ground by the storms of life is what defines us. As I pen these words, I know that in each and everyone of us lies the potential to make our lives count for something other than nought. Simply put and borrowing the words from Chris, all we do is just live our lives and if for some reason, you are inspired by that then I dare challenge you to also live your life and inadvertently become an inspiration to someone else..

Remember that with each new day, we must utter these words, “Now thanks be to God for His indescribable gift [which is. precious beyond words]” and as we face every day with its new challenges, be reminded “No temptation [regardless of its source] has overtaken or enticed you that is not common to human (existence, my words) experience [nor is any temptation unusual or beyond human resistance]; but God is faithful [to His word – He is compassionate and trustworthy], and He will not let you be tempted beyond your ability [to resist], but along with the temptation He [has in the past and is now and] will [always] provide the way out as well, so that you will be able to endure it [without yielding, and will overcome temptation with joy].” To the temptation of seeing the choice to remain a victim of life’s hard knocks as being the better one, the temptation to become a drain to society, the temptation to wallow in self-pity, wrong-doing or selfishness etc, we already have the victory when we choose to acknowledge and accept them. As for me, in addition to walking in these victories, I choose to be thankful if I inspire you whilst remembering that my life is far from being ordinary and not only all about me. We are all inexorably linked one to another, let our lives not be the weak link in the chain of lives that we are part of.

פרידה עד שנפגשנו שוב בתזמון שלו, וייתכן שאהבתו של אלוהים להיות אמיתית לך!

Adios

Bucking the bull…..

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Stay on top!

“Bullfight critics row on row, crowd the vast arena full. But only one man’s there who knows. And he’s the man who fights the bull.” – Anon E. Moss

It is one of those days; those days where the storm clouds are all menacing and dark, when the sun has all but extinguished its rays and the air feels charged with static electricity. Those days when the waiting feels ominous and a sense of foreboding surrounds you. Those days when even an umbrella would probably want to take the day off, with defeat waiting to be embraced. It is the calm before the storm but this calm in itself has taken on another definition. This is one of those times when the very thought of just stepping outside the comfort of your home tilts between being adventurous and being insane; and for many, their lives are just an unending series of unexplainable catastrophic events, of harsh storms; winds howling and shrieking, trashing anything she can lay her fingers on. Yes, it is one of the those days.

I have bull-riding on my to-do list along with deep scuba diving, hand-gliding, car racing…..yes they are still on my list because before dystonia, there was the list. Now, I know that for professional bull riders in America, the rider must stay on top of the bucking and obviously enraged bull (hell bent on unseating you and possibly goring you to death), cling to the bull rope with one hand for eight seconds and not touch the bull with your free hand. Now that in itself is no mean feat because those 8 seconds can sometimes seem like an eternity when you are on the bull’s back, but in addition there are conditions to be met and these conditions are what the judges use to evaluate each performance. The bull rope is not something specially made, it is simply a flat braided fiber rope that is wrapped around the chest of the bull directly behind the front legs of the bull. To this fiber rope, the rider must hold on and stay seated for 8 seconds, if for obvious reasons the rider cannot remain seated on that bucking bull for the 8 seconds duration then the judges declare it ‘no score’. Not 7.5 seconds, 8 seconds! Despite it being called ‘ the most dangerous eight seconds in sports’ I still have it on my list because the list on its own is a statement of defiance and declaration that buck all you can, I am going to ride this storm till the end

However, like the wild enraged bull, life can present events that can and will buck you, attempt to unseat you and generally just be the worst thing that could ever happen to you. The question then is how do you manage the bucking bull that more often than not, you are compelled to ride at some point in your life. The difference between the success of your performance as a bull rider is to a great extent determined by the mindset with which you go into the pen. While many are still processing the fact that they are no more spectators, the pen is opened and the ride begins, and I can bet you that many never make it beyond the pen. The successful bull rider prepares himself for just that 8 seconds, knowing very well that it might be the beginning of greater things or the end of a season. Just 8 seconds, but with lots of preparation and a mindset that has so finely tuned itself to time that even if the horn signalling the completion of the ride fails to sound, the rider knows enough to make a dismount and give way to the next rider; either as an inspiration or as example of what not to do.

Being an avid watcher of bull riders, I have watched people tossed many feet into the air and come crashing down to the hard packed earth, I have seen some stomped on by the bull and even with all the distractions and the attempts of the rodeo clowns or bull fighters, occasionally the bull satisfies itself by doing a victory lap around the arena with the unfortunate rider impaled on its horns. A gory death indeed but we are not here to talk about death, gory or not, because death in itself is an inevitability for everyone. Alas, like every other thing; death marks the end of a season and the beginning of another. Back when I was younger, I always stated that it was better to leave this earth in a blaze – with so much fanfare that it would leave a searing impression on the minds of those that were opportuned to witness it. Now I know better, because it is not the moment that is seared in memories but how you lived till that moment of transition.

Dystonia in so many ways, is akin to riding a bull. It just doesn’t stop at dystonia or Parkinson’s Disease, it applies to every storm that you encounter in your life’s journey. And whilst you may find yourself prepared or unprepared, there is that window of opportunity to quickly come to terms with the situation you are in and grab a hold of that rope because that flat braided fiber rope is all you can cling to once the pen is opened. I have since come to terms with the fact that life does throw you curve balls at times but being able to respond and grasp the reality is what keeps you from being just another wounded rider. Am I going to allow myself be the jewel adorning the curved horn of an enraged bull as it trots around the arena or will I hold on until the 8 seconds is up, successfully dismount and give the next rider something to shoot for? Like we all know 8 seconds is not really that much of a time frame but while you are seated on top of that bull, it will seem like eternity. Regardless of how loud the applause is from the spectators, you have to embrace the fact that it is down to just two players – you and the bull.

As the critics holler their disdain for your ride or critic unfairly the style you use, remember that they are safely seated behind a huge barricade and rarely will they do more than just critic. However, amidst the spectators and other players, there are a few who are there to ensure you get done with the ride and dismount without severely injuring yourself. The rodeo clowns will do their bit when the time comes but you have to take charge and remember it’s just 8 seconds. For as long as life exists, we need to apply the right knowledge to situations as they come up. Bull riding is not the time to grab the bull by the horns, it is the time to hold onto that lifeline that you have so graciously been given. The fiber rope could be past experiences, it could be lessons learned, it could the kindly offered advise many years ago, it could be the out-stretched hand of a stranger but you have to recognise it for what it is or lose your seat even before the pen is opened.

And so remember this honest prayer as you press on

“Dear Lord, I have this feeling in my heart
when I slide down on my bull to do my part

It taught me a lot about life and
what it means to hold on tight

It showed me pain 
respect and all that is right

Lord, forgive me for taking my life into my own hands 
Cos being a bull rider has been my life’s plan

So please God, don’t let this bull take my life from me;
in happiness and humility, a winner I will ride to be, Amen!”

Remember that smouldering ashes can either mark the end of something that was once great or it can be the birthplace of the phoenix, the choice is yours to make.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

 

….bathing in the rain!

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It is exactly 12 years to this day that I unilaterally took a leave of absence from my cozy job with one of the globally recognised brands in the banking/financial industry to sign up at the orientation/boot camp for the Direct Short Service Corp into the Navy. To many, it would have come across as an act bordering on the vestiges of insanity but for me, I had become completely fed up with the monotony of the regular 9 – 5 and just needed something more adventurous. Being put through the paces was no exercise for the faint-hearted especially after the daily wailing of the bugle interrupted whatever respite I was trying to have. Nonetheless, this was what I wanted.

Today, I have no regrets because from that decision, my life took on so many twists and turns that being in a maze would not be too much of a stretch for the mind. Five years after that decision, my neurological system opted to become autonomous and I plunged headfirst into an unfamiliar world of neuroscience, neurologists, dystonia, myoclonus, sciatica, insomnia. Pain, both external and internal, became constant companions and suddenly my to-do list which included setting up funds for my daughter up to university levels suddenly became just a scrap note. Struggling to understand what and how I had started occupying a niche in the opposite extreme from the fiercely independent, highly analytical and logical fellow to becoming someone who pride meant little or nothing to as I struggled with the simplest of tasks like getting out of bed. It seemed as though there were myoclonus triggers hidden behind every simple chore

I can still recall how unreal it sounded (returning from my weekly visit to the chiropractor) as I boarded a crowded Bus 379 from Ilford to Dagenham, when the driver (bless her soul) turned around in her seat and announced “could somebody please get up and give this disabled man a seat.”….Oh yes, she was referring to me and even though I still did not see myself as being disabled, that was me and the picture people saw. It is kind of crazy when you have these flashbacks and suddenly huge waves of nostalgia tend to drown you. How did I get here? What happened to the detailed plan I had? But there I was, all alone, each day a constant battle raging within my soul as I strove to overcome the limitations of my physical strength. Mind over matter! Mind over matter! The mantra did not seem as easy as it was when I wrote it down or told someone else.

Fast forward to this day, I can attest how topsy-turvy this journey has been and I mark today as a notable one because it has always been about the choices God helped me make each day. Refusing to give into the waiting arms of hopelessness and depression, realising that my life meant more to some other person besides me, that even when the clouds were so dark that it could pass for midnight and the gales of the biting cold winter buffeted me so much, I just had to persevere some more even if it meant calling out to or accepting the help of a stranger. Today, I realise that as many strangers came up to me to thank me for inspiring them, they were infact the very ones who were a source of inspiration to me. Strategically placed by God for times when I wanted to just give up, today they are my family.

From those dark days, the light now shines and yes there are still dark days (obviously) but I look around and realise that the options I had back then are still the same two – quit and sink or struggle as hard as I could and stay afloat. We all go through life and what we eventually become is a reflection of the everyday choices you and I make. That the very bleak times we sometimes face can either be a garment that we get lost in or we can use them as the opportunity to train our eyes to see that tiny glimmer of light ahead. We could use those times to lose the individuality of our person or we could use them to further understand that to every limit and constraint, we still get to call the shot because we all were created for a purpose. We could use those times to understand that we were not created to walk alone as against using it as a benchmark for all the bitterness and pent-up resentment just looking for an outlet.

I woke up today, realising that when it is pouring outside – it presents an ample opportunity for me to just get out there and wash off the grime that has built up from listening to the wrong people. To wash off the grime that comes from basing my actions on thinking that my efforts will always be appreciated. To wash off the grime that comes from succumbing to the heat of the moment and letting scathing words do damage, if I choose to. To wash off the grime that comes from engaging in thankless tasks and expecting other people to be grateful for what I do. Today, as always, I choose not to stop because these very ones are there unwittingly to further propel me to heights yet unknown. The rain will always pour, what we see it as and what we do with it is best left to each person. Notwithstanding what we do with it, it will surely rain and as each peal of thunder reverberates through the heavens and the lightening slashes through the skies, it is up to us to choose on what side of the line we want to stand and live.

Remember that it is in the house of sorrow that much wisdom is learnt and it is in the times of adversity that you best count your friends. For on this journey called life, there will always be a meeting and a farewell and so make every opportunity an event that will never be forgotten.

פרידה עד שנפגשנו שוב בתזמון שלו, וייתכן שאהבתו של אלוהים להיות אמיתית לך!

Adios!