Not My Way…..

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Dystonia Awareness Month

Hey! We are down to the final third of the year and ironically September has been recognized in the US as Dystonia Awareness Month. What is Dystonia and why should there be an awareness? In no fancy words, it is simply acknowledging that there are more people in this world than you think you know. “Lord, give me the wisdom to differentiate between the things I can change and those i cannot change!” Dystonia falls in the latter category – dredging up words like neurological disease or disorder, rare and incurable, genetics, an overwhelming sense of helplessness, the ridicule of others who think less of you because you ask, the irony of life’s unfairness, the joy of knowing that you are never really alone, the sheer delight of knowing that there’s strength that lies beyond human frailty. That is Dystonia!

I thought I knew pain however the last two weeks have been an orientation in pain – the pain that cripples you and forces you to your knees, bouts upon bouts of excruciating pain, unpredictable and unrelenting as always. Pain that makes you long for the sweet transition from this cold, cold world. That is just an aspect of dystonia; the unwillingness of my body to cooperate with me, the knowledge that life as I thought I knew (and vainly planned for) suddenly transformed in an instant, the inexplicability of my helplessness and the beauty of knowing that despite how much sorrow surrounds me, there is joy not too far away. When the truth dawns that this is just a prelude to an eternity and how I live it regardless of my circumstances defines my destination. A destination that I so long for, and thus empowered by this, I must make each day that I yet draw breath count for something.

I have no regrets! None at all and if the chances were posed to me again, my answer would be, “I would change not a thing because change is inevitable!” It is not the chances we encounter that define us but rather the choices we make and today I make one as i painfully write this, I refuse to let Dystonia define me. Change my circumstances, strip me of my belongings but with fists clenched in pain, I defy you even with the last wisps of breath that i exhale. This has been truly a journey – an unprecedented one to say the least however one that has taught me so much that I know that even when I am knocked down, there is still strength to not just struggle to my feet but to also reach out and help another. It has been a journey that has redefined family, completely changed my perspective on living to love and revealed that none of us knows what strength we either possess or the vast reserves of strength that we have access to.

Love and Giving

This is a journey that has made so much more glaring the exploitative nature of man at his primal core and yet has also shown me that true love is not sought neither is kindness the result of scientific computation. I have learned that life is like the ocean with waves either forging or receding, that shoes are an adornment for feet that we take for granted most times. There will always be that friend who sticks closer than a brother and even at the detriment of his personal satisfaction, is willing to sacrifice just to ease my pain. There will always be those memories engrained forever of events that i would never have imagined – events of so much weight and value but yet thinly veiled by the indifference and nonchalance of many. I can show you my friends if you ask because I call them family, dystonia helping to rip off the veneer and expose the richness of hearts that beat true and strong, and also reveal in stark nudity the ignorance of hearts that are barely beating. I regret not by any whim the process of being constantly forged, every hammer strike at the forge shaping me despite the accompanying pain.

Today, I am grateful for a life lived – the inconvenience of dependency as it struggles with the history of a life surrounded by so much comfort but yet in total lack at the present. Today I celebrate you – for tolerating my ignorance, for keeping me company in times when words were not needed, for your shoulder to cry on but more importantly to lean on. For pressing through the brambles of an ego very brittle and of nought to me, for standing at my gate (respecting a privacy no longer of value) even though my walls are all but crumbling – a city whose beauty once was and will be to come in no short period. For patiently learning even when I thought I had nothing to teach and persevering in teaching me that I will never be alone despite my bullheadedness. For those nights you stayed up whilst I battled insomnia, offering up prayers that I was unaware of. And standing in the gap on my behalf, being a conduit for answers undeniably sent from heaven, I celebrate you. I am here because you cared, listened and did not disobey God’s instructions.

Tonight I am thankful that should the curtains drop, my footprints will be seen and my life’s tale a source of hope and encouragement. That is what I want you to be aware of – that I went down swinging albeit feebly, going by the standards of crowds that mean nothing but a cacophony of discordant noise. Even as the night all but envelopes me, I am thankful that my light wasn’t extinguished by the lazy whisper of a summer night’s breeze. Thank you for not thinking less of me. Thank you for sharing your own struggles even as we journeyed together regardless of how much or how little time we spent together. It will never be about the distance because as long as hearts beat, resonating with kindness and compassion, every second matters.

Remember that I did not do it my own way; could never have done it my own way, but with lives intertwined and paths crossed, mine is a story of triumph amidst the ruins! A tale that would be incomplete without you.

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

Adios!

Landmarks, Milestones and Trails…..

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“It is not power that corrupts but fear. Fear of losing power corrupts those who wield it and fear of the scourge of power corrupts those who are subject to it.” – Aung San Suu Kyi
I could spend hours dwelling on the ups and downs of life’s unfair paths however it is more beneficial to realize that we are a product of the choices we make regardless of the position we find ourselves. There will always be seasons but the longevity or the brief span it covers is something that we will never be able to control and so it makes common sense that we utilize the seasons to the best of our capabilities.

Within the brief time I have been blessed with, I have known lots of extremes; I have hosted and dined with royalty and nobles and I have huddled together with the hungry for warmth and together, ushered many sincere prayers for security and a hot meal. I have experienced the vitality and exuberance of youthfulness and also known the despair of learning to be dependent on others. I have known and experienced the short-termed high of opulence and also known the despondency of acute lack staring me in the face; an unwanted but inevitable companion. All of these I have since learned are the signs and milestones of life’s journey which we all take irrespective of who you are. I have experienced the wisdom of being a lender as well as the painful lesson of being an ignored borrower. In all of these, a truth stands clear – there is great wisdom learnt in the house of mourning.

Trail

Trail

I have on several occasions learned to ask myself if I was acting from a stance of courage or of abject fear, and the answers have always varied but what remains constant is that there will always be seasons and the choices I make in those seasons determine to a very large extent how quickly I learn the lessons for that season or how patiently I must wait to ensure that my teaching is effective and the feedback appropriate. Life will never be all roses or all thorns however the beauty of life is that even amongst the dying embers of a funeral pyre, a phoenix can emerge. The fragrance of the roses will always waft but woe betide those who in abject ignorance believe that it is theirs forever because that in itself shows a level of understanding utterly ludicrous in itself. Dynamism will always be inevitable and learning how to break a fall whilst in the safe confines of a trampoline in your back yard is an endeavor that will never be regretted.

The beauty of life’s journey usually lies in those moments that will forever be etched on your memory; some will be cherished forever whilst others will be termed experience because of the searing hurt that came with them. As I write, I recall vividly the number of times that I was surprisingly blessed as well as those moments that I was left with my jaw on the floor, stunned beyond words. Dystonia and Myoclonus will be landmarks on my sojourn however inasmuch as it was a transforming moment but in comparison with events like being a Christian, becoming a father, a lifetime companion, it sort of pales into insignificance. Now being able to carefully balance life scales is a skill we learn as we navigate life because the choice to focus on the dark moments as against focusing on the bright moments and looking forward with unquenchable hope to getting to our destination is one that is personalized. The destination that is charted by our purpose on earth should be the star that shines through even in the darkest of nights.

I recently had to weigh in on a trending situation about faith and religion, and trust me, I try absolutely to make my stance clear. There is absolutely no points scored in kicking one who is already down neither is there anything vaguely resembling authority when you hide behind the innocuous threats of a past life in order to pillage that which you are supposed to be watching over. It bothers on the absurd when you manipulate lives that should be influenced by you, and then strip away the dignity and glory from the innocent lives that you can reach. Choosing instead to trample and flaunt as against encouraging and building, the truth associated with that is there will always be a time of reckoning, that is something that is a certainty. In that era of accountability and reckoning, nothing of material value will hold any worth but what transcends every arena is the compassion, kindness and assistance we apply to every situation we find ourselves.

Landmark

Landmark

I recall with a degree of humor, how many people have literally tried to stump me down because I made a choice to be vulnerable with them. I am still standing and the truth is that whilst my bouquet of medication might soar in price, my trust in God soars even higher. I recall these words; ‘What you make (or receive) is an earning but when you give, you touch (or make) a life.’ Now the question so erroneously ignored is that what you earn is entirely yours to do as you please but how and what put the field out there for you to earn from? I am still nursing a damaged rotator cuff because getting it repaired has just not been affordable but I have neither forgotten those who gave of the little they had nor those who chose to ignore. Infact I will always remember how easily man forgets his beginnings and with the headiness of strong liquor, gives because others are giving and then turns around and demands that he be refunded as the liquor bars and the stripper poles are of more value to him. Ignorance? Maybe…..nonetheless when we can bless but through indifference want to curse, we forget that we are spirit beings on a human journey – every action counts.

Do I have regrets? None even though it still is such an intense journey filled with twists and turns but what I can count on is that my destination is sure and each day, I obediently take one step at a time, knowing that His faithfulness is forever. It is almost a decade since I was diagnosed and never have I found myself on the road pan-handling or begging bread even when there was truly no bread in the pantry. Each year in its unfolding gives me a deeper layer of understanding what real priorities are and despite those scary times when the trail stretches unendingly in the dead of the night with no light to see milestone markers or landmarks, I cannot accommodate the thought of giving up. When the taunts of ignorant men, seemingly secure in their wealth, tend to hurt, I remember that even though sticks, stones and words might hurt me but the decision to get up and keep going is mine to make and mine alone. I may not have to give what you specifically request but what I have, I have learned to freely share because not only does it lighten my burden and brighten another’s day, it also frees up room for wisdom to guide me through my journey.

To the many companions and helpers raised in my path, I will forever be grateful because giving is a sacrifice in itself and someday the return on that sacrifice will blow your minds. To the many who choose to be ignorant and believe they hold all the chips, thank you for the lessons in humility and enabling me not to acquiesce to desperation. These are not just fancy words but the expressions from a heart within a battered body, candid and sincere and to all those who feel they must succumb to desperation, despair and despondency in the light of the many who have refused to help, note this – the race is never determined by how swift you are or the victory on the battlefield determined by the strength of an army. As long as you choose each day never to give up, you are chalking up points where it counts and being a beacon of light to the weary, oppressed and downtrodden all around us. We can never change the world but we can change a life, so go ahead and give a lending hand to that outstretched arm and if that is all you do, be content and press on.

Remember, “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” – Leo Buscaglia

עד שניפגש שוב, מי ייתן ובהירות ארשת פניו תמשיך להאיר את דרכך ולתת תקוו

Adios!

Between two cities…..

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In the course of my remarkable journey through life, I have been blessed beyond measure by the number of lives that I get to encounter. And when I use the word ‘encounter’, I mean it literally – at train stations where there are no escalators or elevators. The chap giving up his seat on the morning train while people are still trying to complete their quota of sleep in an insane bid to multi-task. The fruit grocer who tells me to have an extra pound of grapes even though I just have enough for only one pound. The Procuring officer who, without a hint of irritation in her voice, logs in an extra thirty minutes (off the books) just so I get there on time to finalise my business dealings with them. The charming lady with kids who insists on helping me with my shopping despite my clamour for chivalry. I could list complete strangers who just by their actions with no regards to any form of obligation or brevity of time have become contacts on my phone book. Most of whom, I am fully aware, will continue dealing with their own issues as soon as they get off at their predestined stop.

Those are the family of strangers that I belong to and within the time frame of our interactions, I know that they have inexplicably earned a paragraph, a page, a chapter in my life’s tale. Today, I look at my phone book and due to the insistent demand for independence by my neurological system, I have figured out new ways of getting hitherto simple tasks completed with the least amount of added stress to an already over burdened system. To every name, there is a face to match because just like I was explaining to my daughter yesterday about how the brain is a muscle, I had hitherto engaged in mental exercises that ensured that my memory was catalogued. I do not forget faces or names but with the unrelenting clamour  for autonomy by my nerves under the strong influence of dystonia, I have learned how much of an anguish it is when I try to engage in placing a face when I hear a name or matching a name to a face as we converse…….and so I just reinvent a new method of mental indexing to lighten the associated burden of doing things the old way.

Needless to say, I still remember, and when faces and memories ricochet in my head like a hastily fired off shot from the muzzle of a Springfield XD 3″ sub-compact semi auto pistol in a tiny confined space, I have learned the futility of trying to catch the bullet or limit its bouncing around. There’s no good result regardless of how much effort I make and so I just reinvent new methods. Still there are lives that so significantly interspersed with mine that I cannot help but just put them in a category much more easier to rifle through. Now I chuckle when I remember “there are many ways to kill a rat” because now, it’s so amazingly simple to just open the door and let the rat go find someone else with the energy to alternate between the many ways of ridding the world of just that one rodent.

Within the space of four weeks, I learned of the demise of two men (way past the prime of their youth) who touched my lives in so much different ways as their locations. Two continents apart, one life being the only common factor, mine. One preferred to get from me as much as he could even though he rationalised it by saying ‘it’s because of your condition I am even negotiating with you’ – when in reality, there was no respite applied. The other, was as open-hearted as I have ever seen anyone been and even when he struggled to remember the subject of our last conversation, he would still embrace me and plant a kiss on my cheek while propping himself up with his walker. He gave more of himself than I ever gave to him because when the twilight comes creeping in, we more often remember the givers than the takers.

In response to my enquiries, one passed away alone with no relatives or friends with him until he was discovered by one of his tenants. The other had nothing but a long list of lives he had touched with his humility, compassion and smile; who stayed with him till he transitioned with a hymn on his lips and a smile on his face. Am I in anyway trying to make light of the fact that to every season, there is a beginning and an end? Definitely not, but I still cannot picture how sad it is to exit the stage alone and unobserved by the rows of spectators who watch our lives because in all fairness, we are all called upon to play our roles on this stage of life. And so, I know that regardless of how poorly a role you might have played, the least you deserve is a slight smattering of applause just for showing up. However, my question is why would I settle for the polite applause when I can get a standing ovation, not in response to fame or my gaudy attire but in response to the collection of individual lives that were so impacted by our meeting.

When the final stage curtains are dropped and your role is done, what would be the response? Mere courtesy or deep hearted appreciation, I choose the latter every day and so my intent is not to run around like I’m in a game of tag (well I don’t run anymore) but to ensure that whether the duration of encounter is measured in minutes or by decades, I gave of myself both in cash (when it’s there) and in kind. It is so easy to gravitate towards the company of those who give than the company of takers but remember that you are the star character in your own role, and whilst you may delight yourself in being ‘smart’; there is something within you that is meant to be shared with others. “A man without self-control is like a city broken into and left without wall” – Proverbs 25:28 Of what use is a city without walls, how do you provide safety for those entrusted to you?

We are all cities; size, population etc might vary but a city is what you are, and so in this arena called life, what makes you stand-out? Handouts from your fully stocked cellars and granaries might suffice for a bit but when the curtain falls and your granaries and cellars are pillaged and looted by strangers, the insignificance of your handouts would suddenly become glaring and shameful. We are cities stocked for the long run, and giving is a sacrifice but sacrifices are not a hobby in any location I have been to during my sojourn. Though my walls may be in dire need of a fresh coat of paint, and my watch towers have slowly lost their glimmer, there is still something to share with that stranger who seeks solace in the shadows of my walls. Though the buffet table be removed and the fountains but trickle slowly, there is still enough to parch both our thirsts. Though my blankets have all but lost their fleece, and the chandeliers are but a spot on the ceiling, I know that the warmth of our conversation; true and sincere, will create memories never to be forgotten when the time to part ways draws near.

Remember that time never stands still, but even with its passage when the arms of sleep so tightly embrace, memories will always be created.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!