Tag Archives: Dystonia

…in the valley again

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Its eerily silent, with the evening breeze not so much caressing as biting my skin. My bones feel heavy, each joint creaking as I try to rise to my feet. Its almost like de ja vu as I look around and see nobody, save for the bones of the fallen at my feet. Like a sailor aboard a ship in the middle of a fierce storm, my legs feel all rubbery but still I must rise otherwise I might very well lay down and cradle the bones strewn around. And bones do not make for comfort.

I can hear the voices of people above and around me, seemingly oblivious and my voice grows hoarse as I call out for help, however the response is the echo that comes back to me. It is weird because this is like the reeling scenes of a movie once seen before. The callouses on my palm are a sore reminder of the last time I clawed my way to the top and although they are all but scars but still the memory of the climb is still nestled somewhere at the back of my mind.

The twinge along my spine is not of fear because that has been conquered long ago, it is just a painful reminder of the limitations of this vessel. The medication alleviates it but still like relentless waves of an angry sea, it bashes again and again with an almost uncanny determination to knock me down and keep me down – I object to that and acknowledge that even in the silence, I sense strength and hope for me.

Like the bucking rider on the bull, I am reminded that there are just but two players in the arena and regardless of whether there are silent or rowdy spectators, that does not change the fact. I have called out and He hath sent me help and this time will not be any different. This is not my first rodeo even as I yet again gather my garments around me and stumble to the the sheer walls surrounding the valley. Hoarse voice, calloused hands, aching body….still I know this is not my destination.

My head slumps just as another bout of pain hits me, and I see my own hands in the twilight – these are the only hands that will always help me up and rightfully attached they are to my own arms. I will not succumb! I did not and I still will not because there is more than just me to think about. No white flag will ever be hoisted above me in surrender because I am more than a conqueror and needless to say whether the circumstamces acquiesce to that or not, that is my choice.

I am not just going to be another set of bleached bones because this vessel holds dreams and aspirations and to them I will see, though time hastens by but with each footstep I take, I know that this battle has already been worn. The silence of those around me do not make me despair rather they drive me on, and as long as I’ve got a voice, it will be heard. I will not spend any energy in raising clenched fists in anger and disappointment, I need the strength to make my way up because as always when I crest the top, the beauty is a sight to behold and with heads bowed in shame, they will make way for me.

The climb must begin once again because this is not my destination, I know where I am headed and companions in due season will arise and play their role but for now I must do it all by myself and with the inexhaustible reserves of strength He avails me. Battered, bruised and bewildered but still I journey along. The stones feel very cold to the touch as my fingers search out the tiny holds to enable me pull myself up. This is not an exercise in futility because climbing takes me upwards and there I must be. A beacon of hope to those who have fallen down into their own valleys, an inspiration to the few amidst the many who have never been down, a message to all that life is not fair but the choices we make determine who we become – caregiver, friend or just another set of willing hands.

From my lips, emanate praise to The One who makes it all come together for me, for He was, still is and forever will be. Inch by inch, I pull myself up – the grazes matter but nought to me. This is my climb out of this valley and my place will never be with the bones…

מאי להאירובנעימות עליך עד שנפגש שוב .
Adios!

Defined in defiance…….

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Bring it on!

                                              Bring it on!

“Every great man, every successful man, no matter what the field of endeavor has known the magic that lies in these words: every adversity has the seed of an equivalent or greater benefit” – W. Clement Stone

Sometimes, usually most times, the best of us is glimpsed when the going is at its most toughest. It is no huge fear of intellectual superiority that brings the realisation upon us, that we all must have some sort of anchor even as we sail on life’s unpredictable waters. The question is when the storm hits, how firmly tethered are we to our anchor and more importantly what are we anchored to? It has always been a much easier route to just allow ourselves to be like flotsam on the seas however what exactly is the achievement of flotsam but to serve as deterrents, chaff and sometimes nourishment for another living organism but one with properly defined purpose.

I hit one of my low ebbs yesterday and it is quite difficult but oddly familiar encountering the blank stares from people when the subject of dystonia is brought to the fore. Well, nothing really to be alarmed about because this is from the journey of one who has had the very rug swept so violently from beneath him that calling it a fall would be be a stunning display of tactfulness and diplomacy. I have witnessed, sometimes in such an emotional rollercoaster of a ride that even vertigo is almost blissful, the depths of strength that we unknowingly possess and just like the five foolish virgins, we allow the best moments pass us by because we have failed to understand the times and therefore are ill-prepared when those moments arise. Nurturing that seed discovered during great diversity is definitely not a task for the faint hearted, it is what truly defines you however it frequently is associated with the tenacity to defy the odds so heavily stacked against us.

There is nothing that cannot be achieved when we truly set our minds, apply ourselves to and keep our heads and eyes uplifted even in the face of smirking attitudes of detractors and naysayers. Do give it some thought; because one of the very first lessons I learnt in science is that nature/life abhors vacuum and so regardless of your indifference, you are either helping prop people up or simply put, you are gleefully tearing others down or so viciously attempting to do so. Hey! You must be on one side and unfortunately the skill set to vacillate between both ends is yet to be created, so where does that put you? Facing the struggles of pulling yourself up is no mean task and quite daunting I must admit. However, the strength to push through the odds and limitations that we have been unwillingly thrust into is the beginning of a signature lifestyle that will be an example for many.

As I toiled with my perceived failings of yesterday, I was quietly reminded by JOIV that I am usually my worst critic and sometimes we need to be reminded of where we have come from. Dwelling on the successes of the past has the ability to either make you a dreamer with no urge to wake up from the self-induced slumber or it can challenge you to make today count with its own share of success, irrespective of how seemingly tiny the steps we have made. The bottom line is that it is best to totter forward on tiny steps, with the appropriate attitude of gratitude to God who is in charge and quietly steering us towards an end that is simply incomprehensible when we dare to imagine, than slide backwards. The reality is not that we are limited by dystonia or whatever fancy words that science has so eagerly tagged these limitations but how desperate are we to defy these convoluted words and constraints, and actually use the broken bricks in our life to fashion something worthy of being a Masterpiece. That has always been what we are, we just so obviously lack the knowledge and understanding!

The great heroes from the past had their own struggles, not like dystonia some will vociferously argue however these heroes would not be if they had succumbed to their limitations. Moses was a stutterer, Peter was uneducated, Paul was a fanatic and yet they changed their world, defying authority and the traditions of men that had been blindly followed for centuries. Beethoven defied deafness, Handel defied blindness, need I mention Ray Charles, Stevie Wonder and Fanny Crosby? They were defiant and refused to succumb to an acceptable symbol of helplessness, instead they defined themselves through these limitations and so I  dare to ask myself, why not? I am unashamed to say that defying odds is no easy task and of course there will be days like yesterday where your limitations best you and ignorant people amuse themselves at your expense but then they are doing what they can only do, they did not create me and so why should I let their ignorance and misplaced priorities define me. That call is mine to make, and that towel will never be thrown into the ring regardless of how unsteady I seem or whether tremors are seen as fear or some other unrelated emotion.

I am defined not by the utterances of men but the carefully crafted promises of an infallible God, who does what He says He will do and without counsel from anyone – who dares to counsel Him anyway? Who can rewrite His script for my life? Who can relocate me from where He has placed me or has a better destination for me than His? He has blessed me and so what can stand against that? And so even as I set my face like flint, with the radiance of His beauty illuminating my paths, I know that I can do all things because He’s my strength and what inexhaustible reserves are available to me. I have walked through the valley at its darkest and emerged strengthened not weakened. Stumbled through thorns and emerged with the fragrance of the roses permeating my life. It is with this encounters that I am convinced that despite the low of yesterday’s experience, today is the present and marks yet another opportunity to have a better day – that is the choice I have made already in the wee hours of today. I am committed to finishing well not just for me but as a symbol of appreciation for the gift of my life, and the lives of a myriad of others that I am privileged to meet.

Remember this, no other man has the capacity to define your life but you and so instead of rolling over like a possum and play dead, I arise today determined to make it count for good. My limbs may tremble, doubts may lurk at the corners waiting to jump out but I will be defiant in the face of all the odds and make my journey worthwhile. That is what I, at the very least owe myself because there will always be many others craving for that ember of hope just to persevere, and that is what I can and do give.

פרידה עד Continue reading →

Second chances, One change…..

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Make that chance count!

 Make it count!

Separation is almost as applicable to man as is the desire for the achievement of set goals and dreams. When a man (or woman) is stripped bare of the fineries of material riches and geographical comfort, our response or reaction usually marks the distinguishing factor between individuals. I’ve had friends break away from glitz, glamour and fame just to go into isolation and rehab because the clarity of realisation suddenly dawns on them that there’s so much more to life than what today’s world offers. Am I inferring reclusion as being the best way of life? That I certainly am not doing….however I acknowledge that most times, change is preceded by separation or else how would you achieve any change by remaining in just that one spot?

I was recently faced with a friend’s dilemma (and when I say friend, I mean that he’s not just kicking cancer’s butt, but he is also one of the nicest and most modest people I’ve been blessed to meet). It was actually one of those ‘moments’ for me, when he told me that he’d been diagnosed with cancer, and yet you could see that he was committed to making every moment count each time we interacted.  It’s funny but the best perspectives are usually gotten from people who have had their fair share of life throwing both the kitchen sink and the entire plumbing at them. Now it’s more meaningful to me why he was so beat up when I recall our last conversation. He’s an instructor and as is the norm today, a basic requirement for any career/job/internship is the inevitable drug test. What was his dilemma? He just lost a couple of his bright student trainees because they failed their drug test/urine-analysis and he was so beat up about it because he felt that these people were trying to turn their life around and for some reason, the system would not let them.

Now that right there is the beauty of association, it offers a different perspective because when I heard the news, I took the well trodden path that people should assume responsibility for the consequences of their actions (more of harsh truth, less of tenderness…oops!). I opined that it is common knowledge that you must pass a drug test prior to being accepted as a new employee or as an intern, and just incase my opinion is skewed….it is always clearly stated in bold print usually that one of the first requirements is that you are subjected to and must pass a drug test. It’s done everywhere; sports, blue and white-collar jobs, even in jail and so more often than not, you have the opportunity to discontinue what wrong habit you have been indulging in (separate yourself) because chances for change do not come everyday. I feel bad hearing such news and it’s closer to heart when I am somewhat involved with such persons. Why is it so difficult for people to admit to themselves the truth that they’ve made mistakes or are still making them but are man enough to be willing to face the consequences? From experience, the consequences (when there’s an admission, realisation and repentance) are a little more than a smack on the back of their hand because not only is forgiveness divine but there’s a love so profound that when we do acknowledge and give in to it, we luxuriate in the truth that He’s borne it all just for you.

The startling truth is that, more often than not, we reject the most profound of loves and the best of relationships and naively or ‘wisely’ choose the ever-present short cuts in life and convince ourselves into believing that we can get to a destination on our own terms without breaking a sweat. Nope! Life is one hard task master; so experience has taught me that the short cuts in life are usually still under construction and so in our bid to be smart, we find ourselves stuck all by ourselves surrounded by others like us amidst tons of debris, completely unable to make it to the other end. (And I kid you not when I say that’s definitely not a venue for making worthwhile relationships, heck!you cannot stay calm or be at your best whilst you’re being smothered and sucked under debris). Is life unfair? It sure has to be in order to accommodate everyone, the difference is our response to our perceived unfairness of life. Separation is indeed a hard choice to make, sometimes we don’t even get to claim the bragging rights, because it’s just what it is at that moment of intervention. In hindsight however, separation precedes change. We have all been given second chances, some are on their ninth chance but irrespective of it being your second or ninth, it’s still another chance and could very well be the last.

The trifling issue is if we are ready to make that change, then the harsh losses associated with separation is something that we must be ready to put up with. The pains arising from withdrawal symptoms, the discomfort of the transformation, the loneliness et al are things we must be prepared to face. I remember the words of my swimming instructor during my late teenage years when I had barely two weeks to learn swimming and prepare for a comprehensive certification exam; a prerequisite for working in the oil sector…”keep your eyes focussed on the prize (in this scenario, it was the end of a 50m pool) and as long as you see that wall, I know you’ll ace the test”. Needless to say, I did both of us proud by passing my certification exam in swimming and today, swimming still remains one hobby that is no longer just a means to an end but it’s become many things; therapy, an avenue to meditate and a place to clear my head.

Now, unfortunately for many of us, we convince ourselves that we can beat these tests of life – I’ve heard quite a few ‘intelligent’ comments –

‘buy a bottle of detox (I don’t even still know what that is) and drink it at least 48 hours prior, then you will be fine!’ (#geniusforfree)

‘get someone to pee for you, so you can swap the containers cos your employers don’t really care how you pass’

‘turn up your charm knob to the maximum, and talk your way through it, they’ll remember your personality and not care about your performance!’

I can go on and on but in all reality, there’s usually always one casualty and that’s you. When we realise that it’s in our nature to err, we must always realise also that for us to be better, we must separate ourselves from that recurring error (elementary mathematics!). Admission always precedes repentance! If we don’t, the change that you so desperately crave will be gone before you even realise it, and not only does it ruin your chance for change but it gets put on your personal records (personal yet public) – still grappling with what I just said? I leave it to your imagination to paint the domino effect you’ve just set in play that will irretrievably affect your future. Regardless of the errors we made in the past, remember that there will be an opportunity to right that wrong and therefore we must be prepared to recognise the chance when it comes and make that change we so desperately need.

‘He is no fool who gives up what he cannot keep, just to gain that which he cannot lose’ – Jim Elliot. We are all created for a purpose, the passion needed to fulfil that purpose is inherent in us but first we must pass through the ordeal of separation so as to emerge tried, tested and proven. As we face our fears, let us confront them with faith that despite the glaringly difficult and thorny road that stares us in the face, there are roses too, but run we must because the moment we stop running with God who alone can strengthen you, then we feel the thorns prickling us on all sides. God never promised us smooth sailing, but He did promise that He’d be with us through it all and guess what….we will see clearly when the rain is gone. Our lives depend so greatly on how much of our good (status, riches, comfort..) we are willing to sacrifice for the best that we deserve, and even though we be besieged on all sides be it in the form of dystonia or cancer or addictions or the relentless pressure from the world to be someone else, we must keep our eyes open and make that chance count.

The chance to be nice, the chance to be less self-centred and more selfless, the chance to be a shoulder for another, the chance to rewrite our story and give another hope just from reading it, the chance to surmount our physical limitations and soar on wings as eagles, the chance to give and not always take, the chance to empathise and share another’s burden, the chance to love even if we’re not loved back, the chance to just sow some good in the lives we meet, the chance to be a friend to some stranger and/or be rebuffed but still not give up on other strangers, the chance to spread a message of love, hope and faith….because not only do we actually become better people when we take these chances but we also reach out and touch someone who is going through tough times and give them a reason to forge ahead. We can make it if we really want, but we must try – allow The Perfect One all the room He needs so He can take the wheel of our lives and steer us right. That should be our story, long told after we are gone, that he fought the good fight and now there’s an example to follow.

Remember, keep your eyes focussed on Christ cos He’s the author and finisher of our faith. Strap yourselves in, we’ve got some smooth sailing ahead and even when the storm hits as it will certainly do, pick yourself up because someday you’ll hear these words……’Land ahoy!’

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

Adios!

Reflections from the Mirror…..

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Embrace who you are but be YOU!

“When I see you, I think “I wonder which face she sees when she looks into the mirror.” – C.JoyBell C.

I, undeniably, am of the school of proselytes that inexplicably concur to the notion that karma is a female dog. I truly love dogs and I am forever grateful to my parents for schooling me about responsibility when I received Scooby as my 3rd birthday present and since that day, I have never looked back. Sometimes I genuinely believe that dogs are not just man’s best friend but that one friend that stands way above the pack. I am still unsuccessful in building up my dream pack of dogs like I once had in the past but oh well, I have got tomorrow to look forward to. As is the case with everything known to man, there are the pros and cons, the good and the bad but fortunately we have that one unique feature that many of us are too petrified to use – choice.  I am looking forward to getting a new Labrador very soon, how long? I really do not know but what is the whole essence of life devoid of faith because we can only aspire for as long as we can dream. Dreams! a figment of our imagination or a myriad of events to be that the Almighty weaves into our fragile minds?

I was privileged to be at the theaters a couple of days watching “The Good Lie” and suffice to say that I was among the only three people seated in a room capable of holding over 250 people, a poor showing and attendance. I did look up the movie online and saw that it made slightly over $1m, however just like the movie, again we are faced with the dilemma of being gauged by what people think of us or accepting the reality of who we are and therefore commit to walking our own unique path. I have long come to accept that regardless of what people are faced with, the choice of what they see and go away with is theirs and theirs alone. At several times in the movie, I was faced with the startling reminder that whilst tears are an expression of our emotions, our actions thereafter are not in direct correlation with those emotions – they are a willful determined sequence of events laid out and orchestrated by us, whether it is in response to our insatiable greed or our conscience, we play them out as we deem it necessary. In my opinion, that is something that we should dare to determine and just maybe, the onslaught of decay and decadence that is overwhelming us can be slowed down and just a few more lives be saved.

Needlessly, I always remind you that I am a continuous survivor of an incurable neurological disorder known as myoclonus but it has only spurred me on to heights that I previously thought unattainable as against quenching the beautiful life and spirit God placed within me. I have read about, listened to and witnessed the tales of war child Emmanuel Jal amongst others and while his story provokes so much despondency as to the nature of man, I did spend 5 years with a mythomane and so the ground rules are almost alike. When life casts you adrift an ocean of wrecks and flotsam, an unshakable thirst is born (an incomprehensible desire for truth that is so fleeting); one is forced to pause and take bearings again because that brief pause may just save your life. Undeniably, in acquiescence to life’s abhorrence of vacuum, you will definitely have to concede some painful losses but without some form of bearing, where are you headed? because “even if a river flows with milk, a dog can take in only one lick at a time” – Tamil Proverb

Brazen faced, I remember the times just after the diagnosis was made and I was faced with the fact that this was going to be and still is one very expensive battle and as we are usually wont to so badly believe, there are some people out there who have the financial resources to make a difference in just one person’s ‘south-going’ circumstances; I sent out series of correspondences to as many as I felt would utilize their ears. The result? Complete humility and a deep birthed trust in The One who steps in when we are at the end of our rope, because what kept me going were the actions of just a few from the myriad of people I had come to know. On its own, it definitely was not an antidote to depression but I made the choice to look myself in the mirror and remind myself that I was created with just one face notwithstanding the hugely popularly misconstrued context of this quote “humans feel a need to prove they are the dominant race of a species and they inadvertently take kindness for weakness from another individual” – C.J Dorner.  I do myself this gargantuan favor each waking day, reminding myself that my actions are solely mine and so I school myself each day in the fact that I should never grow weary of well doing, because no matter how much I try to infer that the reaction will be good – it is not always the case.

Truth be told, that I have learned that we all have a certain amount of days apportioned to us and one day, with all certainty, the clock is gonna stop ticking and no matter how much regrets we feel, there is absolutely nothing we can do thereafter. What we must live with is what did we do when we had the chance? A new season has set in, and as I sat listening to the gentle words of wisdom by Pastor Ernest Zilch at his retirement service last night, I reassured myself that life is all that we choose to make of it – however the memories and consequences of our choices will always outlive us. The impact of those memories will either better a life or worsen it, for when we are done on this fragile earth, the harsh reality of how we lived our lives will stare us in our face for all eternity. As you behold yourself today, make a verbal note to that reflection – we were not created to be two faced. Let that which you behold be a source of dignity and pride to the One who made you, for in giving then we can truly receive, and choose not worthless edifices of numbered days, but choose that which you will forever be glad that you gained.

Remember “It’s great to reminisce about good memories of my past. It was enjoyable when it was today. so learning to enjoy today has two benefits: it gives me happiness right now, and it becomes a good memory later” – George Foreman

עד שנפגש שוב בזמן שלו, לא דגל לבן הוא אי פעם הולך לתלות מהמשקוף שלי

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!

A glimmer shines through…..

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Seeing the glimmer…

“What is hope but a feeling of optimism, a thought that says things will improve, it won’t always be bleak, there’s a way to rise above the present circumstances. Hope is an internal awareness that you do not have to suffer forever, and that somehow, somewhere there is a remedy for despair that you will come upon if you can only maintain this expectancy in your heart.”- W.W. DYER

What words can best describe how I feel today? Again, sometimes words cannot really suffice but the best I can do is try to share how I feel in the best possible way. It is my birthday today and although I have been awake since 2 a.m however there is nothing that compares to the infusion of life and strength that every day brings and inasmuch as today is kinda special, it is yet another new special day for me. Looking back, I can with more than a wry smile, look at how far I have come through the obstacles and challenges that life has placed in my path….and truly say that if not for God, where would I be? Nothing absolutely compares to the thrill of realizing that I live because I am a creature of purpose and one whose destiny can at best be tampered with but never altered.

I am thrilled by the number of goodwill messages that are coming my way and as every one unique in its own way arrives, I have yet another reason to be thankful because I have long ago realized that life is not measured by the number of birthdays one celebrates but the inexplicable impact we have on the lives that we have been privileged to encounter on our individual journey through life. Amazingly, last night I was in the company of my high school mates after more than two decades and as I stuttered through, keeping up with the updates to our individual lives, I silently acknowledged that I am more than blessed. Regardless of Myoclonus and each new name this neurological disorder spews forth, I know that I have survived through it all for more than just the simple reason that I am a survivor but more importantly that there is yet a purpose to be completed with my days.

Seated right now, in a very comfortable lounge, I prepare to yet undertake another phase in my life so uncannily marked by my birthday. I have lost friends who weren’t and gained those that are and have touched my own life in their own unique way. I reminisce on how it all started and the days when I was all but consumed by the shadows of depression, uncertainty and irreparable loss of those things I erroneously thought were the pillars of my life. Today, I sit and acknowledge that buildings are torn down so that newer and more majestic edifices can be erected and whilst the pain of the demolition puts more than an acrid taste in my mouth, yet I know beyond any shadow of doubt that what is being erected is way more glorious than what was once there. I am grateful for the things I have lost because I would never have gained the things I so cherish. I am grateful for the people I have lost because I realized as my father was always wont to say during my growing up days that ‘the beautiful ones are truly not yet born’. I have been blessed to be the father of an awesome daughter and as each day passes, I realize that nothing might have prepared me for this phase and season which rapidly draws to a close.

i felt the beautiful cold winds of the early spring morning on my face and with each exhilarating breath, I know that I could never ever completely count my blessings least of all, naming them one by one. I have witnessed the blazing death of the phoenix and watched the splendid rebirth of a more majestic creature and whilst I may have so desperately wanted to sit amidst the charred remains of what I felt was so beautiful, yet I was strengthened to hope beyond hope and trust that from the midst of the ashes, something much more splendid and majestic emerges. I have encountered lives that have inspired me and spurred me to heights that I dare not dreamed before. I have watched hope arising as the early morning sun, every glimmer just a taste of the radiant splendor that is just beyond the horizon. I have been stirred to live by faith, and make it my lifestyle, replete in the knowledge that faith and hope are concepts that cannot be taught only experienced and captured by one’s self. Chucking out the feelings of resentment that threatened to pull me down, I stand free and unshackled and whilst my body may be yet weak, still my spirit is renewed daily much more than I could ever have imagined.

I have been privy to the ineptitude of hapless experts and the scorns of people I once held dear. I have struggled more mornings than I wish to remember, every waking moment, an overwhelming battle with the constraints of living with this neurological disorder. Borne more pain than I ever felt I could, accepted with some degree of defiance that I am unable to do the very things that I had so easily done in the past and yet today I stand with such an immense sense of peace and joy that the glimmer out there is mine to bask in and what an awesome experience it will be when I am basking and luxuriating in the fullness of the radiance of a beautiful beginning, a complete restoration of better things than I had previously thought were irretrievably gone. I am a witness to the fact that you are yet to live until you experience what it means to lose so that you can find. You are yet to live until you are confronted with an upheaval of the very things that you felt were yours by right. But now, with a chuckle, I know that you never can have until you are willing to let go of what you think you have. Loving without being assured that you would be loved back, giving even when your very being screams out in protest and simply just keeping your eyes on the hills where the vast and inexhaustible reserves of strength are yours to just tap into.

It is a beautiful year for me, and I choose to persist doggedly and unwavering in my walk and call, knowing that I am not just a pawn to be sacrificed on the board of life but the son of the King whose thoughts for me are simply beyond my ability to grasp or comprehend. Life is a journey where we are privileged to meet and part, and yet what wisdom compares to the assurance that in those few seconds, you have bettered the life of one just like you albeit on his own path. As I mark today with whimsical feelings, I know that the day is just dawning and what an awesome one it will be, because I choose to believe that no matter how long the night is, surely the day comes and with it such an immense measure of joy.

My chauffeur beckons to me, and so I say to all of you who have been such an important part of my still unfolding story, the best is yet to come and so I cast away all thoughts that say the contrary. Wishing you all many more years of fulfilling your own purpose.

Remember that what makes you family is not the blood you share with a few but the loyalty and sense of commitment to our unique paths and purpose with the many others out there who like you have made their commitment to not be put down by whatever life throws at them.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Taking Stock….

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Taking Stock

Choose to listen to your inner voice, not the jumbled opinions of everyone else. Do what you know in your heart is right for YOU. Its your road, and yours alone. Others may walk it with you, but no one can walk it for you. And be sure to appreciate every day of your life. – Melchor Lim (emphasis mine)

I have been struggling with severe excruciating bouts of sciatica for the last week and honestly it effectively dampened my desire to come alive here and do some heart sharing however I am better now, almost emptied my pharmacy of their supply of ice pack compress. A no holds barred struggle between the tremors that accompanied the initial icy feeling and the amelioration of the intense pain, I won!!! And the last week of the month was an exciting one, had an interview in Central London and despite my efforts to appear as normal as possible, it obviously did not work because most of the symptoms were triggered and caused quite a bit of consternation for Tony, Lloyd (?) and Hugo, who admitted that they had never seen anything like it within the five (5) years they have been dealing with individuals and unabashedly, I can take that as a complement now because they see thousands of people daily but most importantly, they were eager to learn and that tells me how amazing they really are. Life is all about learning and only stops in the grave, stimulating their ability to see the big picture was such a surreal experience and I left there knowing I had made new friends and shared myself with them.

Yesterday, I spent the best three hours this year in the company of one of the most remarkable ladies I have ever been privileged to encounter. Yeah, twas a lunch date at Harvesters’ and I truly left there with a great harvest excluding a filled belly of ribbed steak, mushrooms, chips, a healthy portion of vegetable salad and a glass of sparkling Chardonnay to round it off with. Now that is something for you to drool over…….

One of the issues that came up recurrently was the undeniable fact that every one of us has a facade and it is only the brave who are able to step out from the security of their rooms and face the world without that facade, armed with the knowledge that being different is the best compliment you can ever pay yourself. We took stock of our individual lives because hey!its December already and I remember how stunned I was whilst rearranging (I do that every moment when I can) my room when I came across my medical report dated January 2013 and it only seemed like the day before I sat with Professor Hanna reviewing my case on that day. Nostalgic indeed but so much has gone by so quickly that like the dropping leaves from the trees, we rarely ever have the time to notice when they drop. I have realised that the best thing we can and will ever get is NOW and so what we choose to do with it is as significant as the rest of our lives and yes, erring is an ability but our response to that ability is what differentiates us from the rest of the billions all over the globe. I have had my ups and my downs, each in its own varying measure but both present nonetheless. I have overcome a lot of the shackles that hitherto held me back, still trusting God for the perfection that He has promised and I eagerly await.

I have decided to devote this month particularly to taking stock (I kinda do that every morning but this is special) because I am truly overwhelmed by the faithfulness of The One whose purpose and counsel no one can thwart. I am humbled by the greatness of His Grace and favour bestowed upon lil ole me, even at those really dark moments when I just did not want to be found – His Grace found me. Amidst the gales and storms of the year, when it seemed like I had finally been cast adrift like flotsam on the vast oceans of the earth – His Grace found me and upheld me. What an awesome experience it is, being able to bask in and luxuriate in His Amazing grace……………………….. Getting that sms from my father in response to my congratulatory message to them on their 40th wedding anniversary, telling me that their journey would have been incomplete without me being a part of it was just beautiful. Such reminders, subtle and loud compel me to acknowledge that I am and can never be just a statistic in this world. Regardless of how rough the road is, I know one fact – there is an expected end and whilst I am being directed there, I choose to utilise every moment with everyone who has graciously given me their time, their resource, their support, their derision and disrespect (these ones really don’t know any better). And thankfully, I have gotten my back brace so I am glad to have been there to provide a shoulder for those who needed it and for those who will.

The Christmas trees are all out, the decorating is in full earnest, shopping is in crazy mode and I pause and wish I could tell as many as I can that everyday is a day to be grateful for and rejoice in. Take a look at the very things that you have even as you take your shower and be thankful, naturally we all get to shower at least once a day so…..! Be thankful for those moments of absurd laughter, be thankful for those moments of sorrow (it definitely made you think just a little bit deeper, didn’t it?), be thankful for the different seasons – spring, summer, autumn and winter, not everyone can. I still chuckle when I recall Joiv capturing distaste for London’s weather because she almost ‘lost’ her toes to frostbite but that is a reason to be thankful for because I remember my walk with Lawrence who had lost his toes but was still cheery enough to egg me one when I just felt like giving up. I am thankful for Vixen, for daring to do something different and demand happiness from life. I am thankful for Lisa, gorgeous and stunning but who has been such an amazing support of strength and encouragement. I am thankful for Elaine, Pam and my fellow compadre in this battle with dystonia, for being able to rip off that facade and stand tall and strong even with the pain. I am thankful for Shirls, Ele, Vichy – refusing to quit even when I was more than a burden. I am thankful for my brothers from High School – Como, Djecomms, my friends from University – few but awesome even in their little number.

I can go on and on, however I am very grateful for you all that take the pains to read and walk this journey with me. Alas! the night is indeed over and what a wonderful time we will enjoy now the day is come.  For you, my appeal is use this time NOW, to be thankful and grateful for the mistakes and the lessons you have learnt because without learning, you are sure to flunk the tests of life. Be thankful for yet another opportunity to take stock of your uniqueness and acknowledge that there is so much that you can do with just that one person that you encounter, but you must choose to or else regret the opportunity past.

“Life without thankfulness is devoid of love and passion. Hope without thankfulness is lacking in fine perception. Faith without thankfulness lacks strength and fortitude. Every virtue divorced from thankfulness is maimed and limps along the spiritual road.” – John Henry Jowett

Remember yet again, that a life without thanksgiving is worse than those who have passed away. Make your NOW count and rejoice in the memories tomorrow.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Stripped bare……

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Stripped n bare

“You must not lose faith in humanity. Humanity is like an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty.” – Mahatma Gandhi

Admittedly, I have been yearning to get back to doing what I love best – this! however it has been a tumultuous period in the last two weeks and just when I desire to get back, something else comes up and yet still I strive to do my own little bit in the lives of the few people who I have been blessed to encounter. Now it feels like what has been dammed these past weeks just wants to gush out and that would inadvertently drown quite a few including myself and so I have to apply self-control or stand the risk of sounding like a blithering idiot. Like I have chosen to inculcate, each day is such an amazing experience whether I am down under, burdened by the travails of this medical challenge and besought by the emotional desolation that so doggedly accompanies this disorder or I am infused by the joys and beauty of life in every waking moment – I choose to make each day count because every day is a Present in itself and like a kid, I carefully unwrap it…….I cannot do otherwise anyway, being obsessively compulsive has its pros.

A few days ago, I travelled to beautiful South Yorkshire and even though travelling is wearisome and I have to make it as comfortable as possible, it is still a necessity. I actually fell in love with the region and above all I loved the fact that it was colder than London because I have learnt to accept that I am also a Super hero – Mr Exothermic, that is also one of the merits of this condition – accelerated metabolism enhanced by the regular tremors I experience, which translates to the need to be in a cooler atmosphere than most people would like. I was privileged to meet Ibrahim, Mark(s) and Hilary – sharing the stories of their own lives and the beautiful attitude they exuded even whilst doing their jobs. Such encounters make me realize that you can choose to continue to mourn what may have seemingly be lost or choose to celebrate that which you are blessed with finding each and every new day. Of course there were the ignorant ones who thought the shakes were quite amusing or those who seemed to be freaked out by my super hero outfit. All put together, it makes every day such a blessing because I know something that can never be taken away from me as long as I breathe – everything is working together for my good. Try as hard as you may, deride me, ignore me, withhold from me – I will still smile because you don’t and can never define me.

I am dedicating this piece to Carrie Ann who has finally bested dystonia and every illness, today she stands on the other side victorious and free of all disorders and disease and whilst her passing is painful but yet again it presents us with an opportunity to live our lives continually grateful that we were blessed to know her.

Amazingly, it is no news that we may be having the best winter since 1947 and honestly I look forward to it – weird or not! Every time I gaze out my window overlooking the front lawn, I am drawn to Miss Betula Lenta (the Cherry Birch tree) and as usual she stands stripped and bare as she is readied for the months in winter. To many, she has lost her beauty and appeal – gone are the chirping birds, gone are her beautiful leaves, gone are the exquisite buds…..however she still stands and teaches lessons that are priceless if only they can be grasped. If only we can but stop, dare to liberate our minds of all the meaningless junk that we have chosen to walk with and just learn, what a world of difference it will make to us as individuals and creatures of purpose. WHAT A CHANGE THAT WILL BE WHEN WE LEARN AND REALIZE THAT WE ARE FOR CREATED FOR PURPOSE!

How much I love these words ….“Let’s tell the truth to people. When people ask, ‘How are you?’ have the nerve sometimes to answer truthfully. You must know, however, that people will start avoiding you because, they, too, have knees that pain them and heads that hurt and they don’t want to know about yours. But think of it this way: If people avoid you, you will have more time to meditate and do fine research on a cure for whatever truly afflicts you.” – Maya Angelou……because humanity is like the ocean and its beauty is not defined by the few dirty drops. Walk with the few that God raises up for you when you are in need, determine not to dwell on the many that avoid you or that ignore you or worse still, the many that utter loads of balderdash and do absolutely nothing. My life, stripped and bare it may seem now is just a phase that is a precursor to the beautiful seasons ahead, and guess what, I am better off each passing day. I choose to continue to give from what I have, and whilst I may not have by the standards of many but I am so enriched each day by countless blessings that I have become attuned to appreciate even as I stand bare and stripped. And I am grateful to be stripped of all what I do not need now for this season, because it is such an awesome time to really acknowledge what I freely receive – from the new friends that prop me up each day to the lives that I can associate with despite their pain and challenges. I am thankful to be stripped of what has so long burdened me so that I can receive anew what truly counts.

I have seen seasons, experienced the lows and the highs and I have come to acknowledge without an iota of doubt that life in essence is simply a journey and each of us has a choice to make regardless of the circumstances we seem to have been thrust into unwillingly and seemingly without preparation. To realize that when we are forsaken by many,  it is yet an opportunity to be accepted by others. To acknowledge that when we are deprived by those that we thought would stand by us, it is yet an opportunity to give of what we have to those who stand alone like us and be cherished by others. To acknowledge that when we are disappointed by many, it is yet an opportunity to be a source of encouragement to another – choosing not to focus on the bleakness but painfully lift our eyes beyond and grasp the beauty of what lies just ahead. Acknowledging that when we can no more do what we used to, it is yet an opportunity to reach deep and pull out the potentials that have hitherto lain dormant within us. I choose to make the most of what I am blessed with daily, taking the taunts and the indifference and turning it inside out to be a stronger and better individual because the journey is one of endurance, perseverance and unrelenting faith in a Father who is able to perfect that which He alone began.

“How far that little candle throws his beams! So shines a good deed in a weary world.” – William Shakespeare

I am ready for the winter!

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Gone with the wind???….

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It is 3.40am and the very walls of the house are trembling as the winds buffet everything in its path and although it may be scary for many but for me, it is yet another silent message that nothing just happens and even when we are buffeted on all sides by the winds of life, realize that there is a purpose to it and whilst in the midst of the storm, it seems inexplicably difficult to acknowledge that – get this; it does not change that truth, nothing just happens.

It is two years now since I was officially diagnosed with this gargantuan medical challenge and neurological disorder and I can assure you all that it has been a gargantuan change to my life and just like St Jude as she howls and stamps her presence, so much garbage and debris has been blown out of my life, giving me the unique privilege of having a clearer perspective to those things that I once took for granted and appreciating better the gift of the Present. Making me realize that even amidst the howling winds, there can be peace within the storm not because of what may seem to be happening all around me but because I have chosen before now to define what my foundation shall be and having the certain assurance that regardless of this 89 mph wind gusts of St Jude, my anchor holds within the storm.

I watched with keen interest as the tree that stands in the front lawn relentlessly lost her leaves and as each leaf was torn off and blown away, it seemed such a hopeless and despairing event because those leaves have been torn off from the familiarity, security, comfort of home, not by choice but by events that they certainly had no say in. However, as each leaf was borne away, it also marked the beginning and end of another season. Now as I sit in silent contemplation of all the events that have taken place in my life within the last 24 months, I can enjoy the beauty of a whimsical smile because, what a journey it has been. From the very first moments, the words ‘rare and incurable’ were uttered by Adrian Casey, it has been a tumultuous journey. I recall the nights when the rumblings of my stomach were loud enough to be heard on the phone during international calls – not because they were symptoms of a movement disorder but from sheer hunger. I can remember the despondency I felt, the isolation, the many unanswered questions, the bleakness of the present then…..

Today as I yet again share my heart, I am thankful for the winds of St Jude that threatened at times to overwhelm me but that have unerringly blown me across the many paths of the beautiful people I can call friends today. I thank God for the times all the flights and trains were grounded (for safety reasons which I could not appreciate then), for the atrocious conditions that forced me to force my way forward, head down and scarf lifted with limited visibility, with nothing but just my faith and the infallible truth that I was created for a purpose and a much grander reason than I may have been able to imagine then. I have had my very moorings almost blown away, my foundations shaken, veneers of a past life peeled away painfully, exposed to the elements with nothing to seemingly live for. I have experienced the deepest betrayals by those I chose to have looked up to, been cast aside in derision like an old rag doll, ignored by those whom I weakly reached out for some assistance. I have experienced the depths of isolation and loneliness, cast and borne by the winds of change, away from what I called security and home before now. I have lost all that could be lost, shed tears from acute physical, mental and emotional pain but I am still standing today – what a journey it has been indeed.

Ironically St Jude according to Catholicism, is the saint for the hopeless and the despairing and how appropriately named is today’s windstorm. I have come to realize that each time I experience these storms, there is a better future awaiting me and I will always choose to believe that since I am still with breath, then I am but stronger in all aspects. Without these winds, I will not be doing this. Without these winds, I will not be blessed with the friends that I have made. Without these winds, I will not be who I am today and I know that I can never be gone with the winds because the winds are here just to move me to a better place and the stronger they are, the further and better a location I am getting to. The stronger it blows, the more unique individuals I get to come across albeit for a brief period of time and so I have learned to make every moment count because all I have is the now and so I have chosen to make everyone count. Now I can truly appreciate how blessed I am to be surrounded on all sides by a family defined not by blood but by the vicissitudes of life and the awesome realization that God alone rules over the affairs of men and therefore there is a purpose to everything.

I count myself blessed to be able to say ‘it has not been by strength or by might but by the provisions of a God whose love is so real and sincere’. I choose to lift my face in the winds, with my legs spread apart and my staff firmly held and just breathe words of thanksgiving for a journey that is bringing me to my expected end. For the lives that I have had the privilege of passing through, for the lives that have inspired me and been inspired by mine – no truer experience is worth reliving and despite the downs (countless they may have seemed then), the ups will forever be etched in my life. And whilst like a Lone Ranger it has seemed many times, I am truly grateful for the Tontos that have accompanied me each phase of this windstorm. I am thankful for the lesson that has taught me to understand that ‘
encountered the most profound of moments and learned that life is like a coin, pleasure and pain are the two sides. Only one side is visible at times but remember that the other side is waiting for its turn to be visible.

And even as silence and calm precedes a fresh burst of wind, I have come to acknowledge that it is only the cowardly and foolish who believe that just because difficulties differ in intensity then they are immune to their own storms, however the wise use these moments of calm to hurriedly reach out and grasp a floundering arm, a struggling life and make a significant impact. Nothing lasts for ever and so dig deep and press on, for this storm is just for a season. You can choose to complain that roses have thorns or rejoice that thorns have roses, the choice is always yours to make. And as I wrap up this, I am thankful for you all that have been willing to share this journey with me and glad for the opportunity to have been bold enough to share it with you.

“I believe in going with the flow. I don’t believe in fighting against the flow. You ride on your river and you go with the tides and the flow. But it has to be your river, not someone else’s. Everyone has their own river, and you don’t need to swim, float, sail on their’s, but you need to be in your own river and you need to go with it. And I don’t believe in fighting the wind. You go and you fly with your wind. Let everyone else catch their own gusts of wind and let them fly with their own gusts of wind, and you go and you fly with yours.” – C. JoyBell C.

Remember that we are all creatures of purpose and pleasure, make every moment count because now is all you have – yesterday is gone and tomorrow is yet to come.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!