Bent not broken….

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Beauty of Nature

Today is my birthday! And in line with the actual definition of the word, I was born on a Wednesday and notwithstanding the fact that I was born preemie, I choose to celebrate my birthday every week. In my journey here on earth, I have learned that it  is usually those life-transforming events that shape our character and influence our decisions. And so with this intolerable dystonia, I have learned that more often than not, the frequent insouciance I encounter is a direct expression of ignorance; ignorance in terms of knowledge and ignorance in terms of life’s purpose, while the natural reaction to ignorance can be scathing and harsh, there is still a choice to be made – React or Respond.

Considering the timeline that I have as a result of dystonia, it still amuses me that we still associate pedigree to what can be almost valued as worthless. I had the privilege of speaking at a meeting on what dystonia is (surprisingly it is still relatively unknown even as we wind down another decade in the 21st century!) and what really reminded me of why sharing our experiences is such a distinct honor, was the rapt attention of my audience and the fact that a few would leave with the knowledge to live as humans. The ability to tell ourselves the truth is something that can be trifled with, ending in irreparable sorrow however life is a platform of learning nonetheless as is the case with every academic setting, there will always be the hecklers and those who choose to be distracted.

“Where are you from?” is usually a question imbedded within the first five statements uttered by people to me. My origins? That in itself is a topic for another post however I always strive to comment on the fact that I have been at both extremes – abundance and lack, have had the privilege of living and working in four different continents but despite what many would exclaim in terms of sentiments, the nature of our living is still a continuing study for me. I remember the disaster of a hurricane and the desolate pictures of the aftermath and it is almost mind boggling to reconcile the before and after however what conveys the most poignant message is not in the destruction to property but the resilience of victims. Resilience that even though life chucks boulders at us, and we are utterly astonished at how bent over we are, under the crushing weight of these boulders but yet we can spring upright with the passage of time if we choose.

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Bent but Unbroken

Hooke’s theory of elasticity does not apply to the human being because like the supple trunk of a young acacia tree, you can bend it till its topmost leaves share the same dirt as its roots however when you let it go, it springs back because its growth is upwards. I can be seen as reticent when there is the heated discourse of how well life has treated us and then the popular game of comparison commences because I know that it takes wisdom for one to acknowledge that life has its seasons and thus prepare for the changes that accompany such seasonal changes. Unfortunately, asking for a helping hand is still largely construed as an opportunity to re-emphasize current economic and financial comfort, however I have learned that the act of bending down to an upstretched arm is also a check on your suppleness.

Even as I watch the huge strides taken by humanity through technology, there is a huge dearth in terms of carrying along all those virtues that make us human. I am bent over but definitely not broken, and the hope of that realization powers me through some really bleak days. With the frenzy of today’s living, we are wont to satisfy ourselves with fleeting glimpses as we rush through life and thus erroneously capture postures wrongly, seeing bent as broken. Alas even the broken can be fixed but when our change-over terminal looms ahead but we cling so passionately to the comfort of the moving train, how then do we ever expect to progress in life. I realize that habits formed can be difficult to break but it is a task that can be made easier when we admit that we are all works in progress and life is a journey; because when we acknowledge that life is a journey then we can understand that journeys mean progression.

There is no standing still and yes the view from the mountain top is so exhilarating and usually lulls one into a false sense of security but remember life and progression go together. The choice to build our fortress on the mountain top simply reveals our lack of understanding because what happens when we must go down to the valley; do we choose to stagnate and decay on the mountain top dulled into a false sense of reality or do we fall over and stay down preferring instead to be content with the diminishing memories of the past even as the present ticks away. There is no joy in the house of sorrow however there is ample opportunity to learn and be schooled for the events of the future. Just as the sun arises each day so must it set so that life can continue, and no matter how long the daylight lasts, the night when there is little or no light must precede it.

Borrowing the words of Albert Einstein, ‘Life is like a bicycle. To keep your balance, you must keep moving.’

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

Adios!

Out on a limb….

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Out on a limb

Every action is preceded by a desire, and without mincing words or trying to fancy paint it, I really wish I could be more determined to more regularly writing. However, there is the inevitable issue of life and its unpredictability, and just having to navigate each day is a victory all by itself. It is another Wednesday; my own personal holiday and suffice me to say that while it is just another day in a week of days, it holds special value to me and along with experiences from the past, I chose long ago to make Wednesday my special day. From the viewpoint of someone who has worked in four continents, I have since realized that acknowledging that our bodies need rest is not a thing of shame because on the flip side, when we fail to acknowledge that, the long mounds of broken bodies littered along the road as we journey through life will definitely remind us that we just might end up as another broken body if we do not apply wisdom and caution.

One of my daily slogans is ‘life is all about moments and it is either we are bold enough to seize them (if we can but recognize them) or we spend the rest of our lives ruing those missed moments.’ Last week, I was at the hospital again for my bi-annual routine check-up and this is really always a big deal because I don’t like hospitals or crowded places at such (it is a proven trigger for a Dystonic episode). Now what makes this particular visit special was that it was to have taken place in the first quarter of the year but when you are confronted by bills of all shapes and sizes, the associated cost of just living a life especially one like mine that is rife with special needs, you need to be very careful about what you bite and chew. In line with the uniqueness of this visit, whenever the reminder popped up on my calendar, it was almost natural to cancel and reschedule whilst believing that the funds for yet another expense would be made available as promised by God. And so, I kept on rescheduling, even when I knew from the warning signs of my body that this was not an event that should be placed in the category of ‘to be done during leisure’. And then there is that niggling voice that keeps on nagging you about the growing changes associated with the journey of one battling dystonia, that I sort of had to belatedly admit to myself that faith is not an easy activity. In the words borrowed from my devotional, it is going out on a limb.

Oh the joy of childhood, when there were no bills to pay, no accounts to balance, no praying for the kids, nigh on zero responsibility save for that of ensuring you came home with an academic result. Not just any result but one that would like a grand jury, justify to my parents that the legacy of good education was properly being bequeathed to me and that I also properly understood that even though as my parents, they were obligated to invest in me but I also had to hold up my own part of the bargain. And so in the summer holidays, during those long trips to my (actually paternally influenced) hometown, there was always that giddy headiness of being free to run around more (just a bit more than was ordinarily allowed). Not that I was allowed to run riot, far from my imagination anyway, but there was just that teeny weeny bit of slack with regards to the daily structured regimen of waking up early, diving straight (still half asleep) into family devotion and then off to the races; daily chores, prepping for school, school itself (and the added but necessary skill of avoiding being bullied by senior students), home (lunch, siesta and homework), preparing the family meal (I was responsible for Wednesdays and Saturdays), more study, night devotion and bedtime (with the regular foray at night into the sitting room to watch the late night movie while everybody was asleep). Childhood was fun and just adds credence to the truth that we should be childlike in our walk with God, not childish but child-like.

Today, I still find it amazing that I have never broken a bone (or maybe I do not remember breaking one) because I still remember how swanky it looked with an arm in a sling or a limb immobilized within a cast. Why the amazement? I was quite the plucky adventurous kid with a daring attitude that almost bordered on insanity – leaping off , balconies and buses just for the fun of it, accepting the dare to roll under dump trucks as they were passing and for my grand finale; almost burning down my high school science laboratory and myself because I was surrounded by all types of acid reagents, no teacher and the curiosity that has killed many cats (after-all Sir Newton, Robert Hooke, Henry Le Chatelier, K.F Braun allowed that curiosity to drive them into becoming science legends). Mine was a childhood that was far from being uneventful, but my dabbling into my memory cauldron is specific: remembering how beautiful life was when the trees bloomed with fruits. I remember learning how to scurry up a tree, adrenaline dousing the pain of the grazes, scratches and the occasional wasp bite just to get out on that limb in order to reach and retrieve the fat juicy mango, guava or Indian almond. The objective was the fruit at the end of that tree limb that was somehow so hidden that attempting to pluck it by hurling stones, twigs et al was an exercise in futility, and regardless of how tiny the limb looked, getting the fruit was all that mattered at that moment in time. Oh, I remember how many times the limb snapped because of my added weight but the stars that swung around in my head after the fall was nothing compared to the fruit in my hand. That was what childhood encompassed; learning how to be street savvy, learning what my interests and dislikes were, learning that each of us is as distinct as the stars in the sky and learning that loyalty, blind trust in God, faith that good will always trounce evil and relationships were values that each person needed to learn in preparation for the life ahead.

Faith is....Doing!

And so today, when it seems as though my responses to life’s challenges are extraordinary, it is just an embellishment of the truth that the best laid plans are those laid by God. I am simply an ordinary bloke in the hands of an extraordinary God, with each day another opportunity to just trust God and get out on that limb. As I got myself ready for my neurologist, I asked (with bated breath) Amanda at the front desk/window, “how much would this consult cost because at the moment, I do not have any insurance?” Her response was matter of factly delivered without even looking up and since the option of paying by check was available, I opted for that, believing that before they cashed the check, I would have the funds ready. I have always maintained that I believe that I’ve got the best neurologist in the world and so as the consult went on, every new change discussed and medication reviewed, I just voiced out how difficult it was getting any form of meaningful medical assistance especially for people living with rare conditions. That was immediately acquiesced by her and then she asked how much I was charged, now that right there is a rarity because most doctors are completely unaware of the fine details of billing. In response to my answer, she said she would go see what could be done because naturally she always wants to know what activities (especially in terms of income)I am engaged in with respect to the symptoms associated with the horrendous fiend known as dystonia. Suffice me to say that as I exited the consulting room and went to get the next appointment date, the bill had been reduced by 45%!!!

Now it is not all about me, however I can only share my own experiences and that moment (the entire consult) was literally me going out on a limb not because I knew I could wheedle some discount but because I am reassured each day that as I long as I remember that the battle’s victory is not defined by the parameters of strength and might, nor is the the race victory defined by the swiftness of feet then I know that His mercies and provisions are there for the asking. Most assuredly, I say that being logical is one of my strengths but when it comes to just waking up each day and living life, I refuse to allow myself be restrained by the limits of logic. As long as I see a need, I am convinced beyond all doubts that there is something I can do; it is not always about the material things you can give rather it is those intangible things that you give when the material is lacking that make the most meaning. Just having the time to listen to someone else going through a storm might just be what is needed to get the bilge pumps turned on and subsequently prevent his vessel from going under. Most times, we fail to admit that we don’t always know the answers, heck we do not even know what the next moment holds for anybody but we can acknowledge that in the effort lies victory and sometimes that victory is right at the end of that limb. All we need do is step out on that limb! You can drive yourself crazy by applying all known theories, calculating the relationship between our body weight (oh remember that also involves getting a scale etc) and the physical traits of the branch but until we stop and put aside the white board, the text books, the calculators, we are just just going to remain at one end engaged in pointless reasoning and failing to realize that we are not even moving. And if we are not moving then how can our steps be guided? If our steps are not guided, then how do we know that we are not just wandering around in tiny circles? Seeing the same things every day and not even aware they are the same things because we are so preoccupied with attempting to solve things using our puny brain and brawn.

Today is another new day, another rare opportunity to make our lives count for something. Staying all swaddled up in the ‘security’ of our comfort zones is not it because remember that the rain falls on both the good and the bad so who says that where you are today and the accompanying luxuries are yours to keep forever? It never ceases to amaze me when I am confronted by ‘experts’ with their fail-safe solutions prattling non-stop and inadvertently gloating also. The neurosurgeon says that Deep Brain Stimulation (DBS) is the answer to dystonia and my follow-up question is have you undergone the procedure? Do you have dystonia? Hold on for just a second and listen because wisdom is not exclusively categorized by how old you are. We do not create, neither do we hold the plans and answers but what we have are a pair of hands and a pair of ears and my self recommendation each day that I am blessed to see is that I ensure that I use what I have been blessed with to bless just one other person. Remember that it is impossible to change the world we live in at once but we can start that change by beginning with ourselves and letting others see that change because whether you choose to admit or not, someone is watching you. Be less of a talker and more of a doer because doers evoke change and everyone needs some respite from a world that has suddenly been besieged by a horde of talkers who have completed murdered their ability to listen. Kindly stop!….and just get out on that limb, that is the very least you owe yourself.

עד ניפגש שוב, תן את היופי של ארשת פניו לזרוח עלינו!

Adios!

Failing successfully……

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Falling.....

Failing to learn

Everyday just before writing, I stare at the blank page before me, say a prayer that the finished canvas will have a message for at least one person. That I presume is the desire of every creator. For at the end of all things, God rested because what He had created was pleasing to His eyes and mind you, what other authority or standard supersedes His. It has been a glorious month for me, and no I have not been scheduled for Deep Brain Surgery neither have I been rid of Myoclonus but I marvel with each new day taking full cognizance of the fact that somebody somewhere did not have that opportunity and so I know that every new day is a second chance for me. To make a better today than I did yesterday, and knowing that there just might be no tomorrow and so what better gift than to have the opportunity to create our tomorrow today regardless of whether we will be the main character or not.

This morning, as I knelt down in humble supplication and gratitude, it hit me that I just might not have asked God for a better playbook because in all of my prior failings, I have truly learned something that I will never forget……and that is in the effort lies victory. My next neurological review is in a couple of weeks and whilst I still struggle with more medication, each newer than the other, the pains and the battle still rages on but I look around me and what a multitude of friends and angels I have all around me. My heart goes out unflinchingly to JOIV who without an iota of doubt has been in the dumps with me all the step of the way. Every phase of this unending war, standing shoulder to shoulder with me and even hoisting me up when I could no longer do that anymore. Standing out, head and shoulders above everyone else and marking her place with more than just a gesture of love be it in the form of a massage when my back screamed out from unrelenting excruciating bouts of sciatica or a cheer for every little improvement.

Now I want to give honor to this very special person, who despite the failings of the past represents to me more than what a champion does. Holding on when it all seemed needless to just because of a conviction born in days past. Now I have a second chance and I bet you that I will die trying to make it the best shot I can muster even if the odds are stacked against me, because it is simply untrue, we are responsible for what we choose to make of our lives and the odds will always be stacked against us, so quit complaining and listing all the demerits of your present circumstances. Delve deep and realize that just as there is night and day, good and evil, beauty and ashes, there will always be merits and demerits but the choice on which to dwell on will forever be yours to make. I reminiscence with loads of nostalgia of the days gone and the failings I made and with stunning clarity, I realize that I am who I am today because I failed in the past and what better lessons than learning not to make the same mistakes again. That can surmise a successful life in all reality, just accept that you will make mistakes when you try, and you will not learn when you do not try.

Now I have failed on countless occasions, some still bring a twinge of sadness but today I realize that just like building bricks strewn across a muddy patch, each failing stirred up some resolve not to get all mucked up and bogged down but to aspire to each new stone and a greater distance from where I all began. With every gentle word of encouragement by JOIV, every whispered cheer, every rousing prayer and an inexplicable belief in me, I can stand today confident in the fact that I will never be alone anymore and although the storms will rage and the clouds loom, this is me – triumphant and stronger than I could ever have imagined. Prior to now, I believed that the recipe for fulfillment was in aspiring to attain some self-imposed goal but I beg to differ because it has never been and will never be all about YOU, it is about giving back from the much that you have received and that is a lesson I learn each waking day. Walking this path with a choice made, not with the trappings of the world’s definition of success but in the full realization that even when we fall, we cover more ground than we would have just standing with nose uplifted. But we must acknowledge that the road to success and perfection is inevitably strewn with huge boulders and till we appreciate each fall and sit, ponder and inculcate the lessons from each fall, we can not continue.

Today marks the beginning of the best days of my life and they are not measured by how much pain I feel each day or the incessant regime of pills that I have to take daily, the regular visits to the chiropractor et al, it is simply because i HAVE CHOSEN TO BE HAPPY REGARDLESS OF ALL ELSE. Nobody deserves happiness better than me and as I am blessed each day with life and opportunities to meet countless others, this is my message to you too, choose happiness because nobody else can make a better choice than you. Accept that there are falls that you must make but yank yourself up and be thankful for the fall because now you know what not to do when the next similar scenario rears up again. Now that to me is success.

I dare you to make a success from every fall and watch the countless #haters who will come clamoring for you with their faces all puckered up from eating the bile of their hateful words. Do something different, teach them because that is our purpose anyway and pray that we will have done something astonishing with the very short time we had.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!