Tag Archives: Pain

The Loss & The Pain…

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Wear it well

It’s still so unreal…31 days ago precisely I received a call with information that could have been phrased better (but semantics aside, we get to choose to be kind or mean, compassionate or manipulative). 31 days exactly and my life has forever been inexorably altered, not knowing how scarred I am, I do know I’m not the same person.

For 2 decades and 4 couples, I’ve always asked myself ‘what would Jesus do?’. Now I can’t seem to do that or mebbe my ears have copped out on me (something on this body seems to give in every other day currently) and I just need to be louder. He is sovereign (and was man too) and His reason for calling you home is not one I’d think of asking. Nonetheless, it’s pointless cos I know my mind lacks the ability to comprehend His reason but still I trust. As the veils start coming down, I still hear you say, ‘Edu, you’re my son. Everyone can’t be like you.’

Mommy, I tried! Wiped off the derision spat at me in the last decade, ignored the haters and toiled as much as I could. You represented the glue, you walked the talk even though you were far from perfect like everyone else. Mommy, I forgave cos I was forgiven. I addressed needs when I saw them despite your reproach, ‘You know you need all the money you can get!’ but I’ve always lived by a different set of rules anyway. You taught me to be kind and compassionate but you also made it clear, each life has its own path.

The friends I was contemptuously told would abandon me are still here till this day, and I’m grieving hard because I erroneously believed my heart couldn’t be broken, pandering to the false notion of machismo. Nose to the grinding mill, I persevered like the orphan with no one to call family. Through the darkness, there was always the flicker of a candle spurring me not to give up. Now the dam is breached, irreparably I fear and I acknowledge my heart wasn’t ready because even with the odds and limitations, I try to assuage the pain by praying you know that I really tried my best.

Mommy, you said fighting doesn’t make you a man but the truth is that as a man, you must fight. And even though I’m confident that He who began the work in you has perfected it,, why can’t this gnawing hurt and sadness ease so I can breathe? Even as I look at the unbalanced scale, I hope I made you proud. I hope you see the plans, God willing, I had for you. I hope that even as I grapple with your tragic exit, you’re alive in me. But even though I was able to tell you how much I loved you, it still doesn’t bring the relief I crave.

Your wings were ready, my heart wasn’t so I still struggle to give peace a chance, that was your final mission. And forgive me if I don’t turn the other cheek because I see how quickly the vultures and hyenas lie in wait. Know this mommy, the wicked will have no peace and for the sake of He who hath called me, I will yet look to the hills for strength and I pray that I’m not consumed by this unrighteous rage. Rest in peace because you earned it but nothing can fill this void caused by your exit, still I will trudge on and ask that you guide me lest I give in to the darkness that beckons to me.

Thank you mommy, for making me who I am and teaching me that knowing the ‘who’ will always trounce the ‘how’. Adieu mommy and rest from your labors. I love you but miss you more, Edu.

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!

CEO, Inspiration Inc…..

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To start with a rueful comment about how frustrating writing can get is right about apt because how else could I tag the emotions I felt 7 hours ago? Finished up a piece and was putting on the bells and whistles, suddenly Shazam!it’s gone and when the device in use is my back-up, suddenly the realization of how much I miss my laptop is suddenly brought to the fore…..Oh well, since I do not want to ‘join’ the vanished piece then I guess the best course of action is to shut down, call a time-out and welcome the new day. That I would categorize as being one of the unsavory duties of a CEO, there is no other table for the buck to go to. This event along with the ones happening in recent times make me question how busier can living be? How can I live without writing? It started off being an avenue to channel all the hurt, bitterness and resentment in a positive way but now it is becoming a vital part of who I am daily.

“All men dream, but not equally. Those men who dream in the dusty recesses of their minds wake in the morning to find it was but vanity but those men who dream by day – these are dangerous men, for they dream with open eyes to make their dreams comes true.” – T.E Lawrence. Right off the top of that, I think I class myself as being ‘dangerous’ and were it not for the constraints of dystonia, I probably would have pursued a career in which danger played a huge role. Why? Danger lurks around every corner so why not best it as quickly and as often as you can however it is essential that you know yourself – stick to the shallow side of the pool if that’s the extent to which you can push yourself.

I have since learned not to view myself as strange whenever I tell people that I do not dream (and this is whenever I am able to wrestle insomnia to submission) but dreaming due to the heavy influence of lofty aspirations and objectives, that therein is a totally different subject matter. This is what I do when life chucks lemonades at me, I pick myself up, ignore the bruises and welts and find the nearest food processor and make some lemonades (summer is fast approaching anyway). Although turning and tossing, watching the hours slip by elusively is no fun but rather than give in to grumpiness and full-blown irritation, I dream and then act because I know time is no servant of any creation. Developing that uncanny ability of identifying the pros and cons is not very difficult but transforming the cons to pros is where the heavy lifting is done. Can all men dream? Most definitely! Can all embark on making those dreams come true? That is a question best posed and answered by individuals whose lives are greatly determined by their personal choices.

Some weeks ago, I posted something on social media and one of the many comments (in interpretation and in literal candor) was ‘you are an inspiration!’. Well dystonia or not, compliments are a pretty good boost to one’s psyche however over the years, I have somewhat become adept at separating the default comments from the sincere, unreserved comments. Now I do get to hear that comment frequently but for some reason, this particular day’s comment got the huge wheels in my head churning (which is something I try very hard to avoid because of the adverse consequences, it is so wearying getting them to stop) and I alluded to the fact that inspiration is a lifetime career with a lot of pomp and allure but ironically no financial remuneration. Oh, that sounds really grim especially when today’s world operates on the measure of tangible wealth that translates to an individual’s net worth. I do opine however (and most assuredly this is not borne from a place of lack) that if we were to tag everything in our lives with a physical cost, that would be utter shameful because then it would be most uncomfortable explaining why many lives are constantly in the red.

I remember that during those ‘ship-up or ship-out’ regular exercises as a growing child, one of the oft repeated phrased associated with those exercises was, ‘this exercise will help stop you from behaving like a gutter bred child!’ It took me a couple of years to completely decipher the meaning especially since it was associated with those frequent exercises and despite the fact that I truly was a ferocious reader and hungry for idioms and definitions but even those were not strong enough motives to ask a visibly upset parent to explain what that phrase meant. In the acquisition of knowledge, seeking the truth and/or definition yourself usually is the best way to go because when you do get the meaning, you somewhat get a personal patent that ensures nobody can take it away from you. And so attempting to tag a price to everything we do is akin to behaving like a gutter bred child, however the gutter has never been ranked on the list of suitable accommodation for humans. So get the heck out if you think you are in one or have been told most of your life that the gutter is where you deserve to be.

Every new day, I am thankful for the countless opportunities to be inspired by the lives and events that occur around me but most especially I am inspired by the false facade that many put up because when you just genuinely show some humanity, then you are confronted by the turmoils that many face and are trying to hide from by concealing them beneath this thin veneer. Just as the trickle on the surface of an aging dam is a sure sign of the torrent that will follow closely, so is the certainty that someday that facade will crumble underneath the pressure of trying to avoid charting your own path. It takes little or nothing to travel on a well worn path but remember that just as our DNA varies so do our purposes and so investing energy into determining your own purpose amidst the jungle of society and swinging at it with a machete will ensure that you forge your own path and help another begin theirs. We are all interwoven at some stage in life and we may begin together but remember that ‘in life, we meet to part and part to meet’

Life is an exercise in attaining balance; giving vs receiving, listening vs talking, empathy vs cynicism, kindness vs cruelty…the list goes on and at every milestone we attain in life, we must choose what side we want to be on. Seeking ensures finding, asking ensures knowing and knocking ensures access to doors we hitherto presumed were non-existent. It is no easy feat living your life but jumping on the band wagon is not an option because you really have no say as to the direction of the wagon. Being an inspiration means that more often than we think, we give a fellow traveler some company for some distance but then she/he must veer off when the time comes. Sprawled on the canvas of a boxing ring after a flurry of jabs, hooks and flush upper cuts does not give me the license to remain there and be counted out and so despite the urge to remain there, I must get to my feet and give it all I have got and some. And even when it is just the rings that are keeping me upright, there is a person or two out there who can truly draw strength from your fight, so keep at it until the bell rings.

With every new day, I strive to push myself just a tad more than I did yesterday and even when my body is playing out a symphony of agony and pain, that is not enough reason for me to stop, I just have to rest a while and then forge on. And when the inevitable opportunity of meeting a fellow traveler down on his back shows up, I will yet lend him an arm and pull him up. With arms interlocked, feet struggling to keep going, I can still whistle up a jaunty tune to make those moments worthwhile. We are a sum total of many parts and lives, and so to everyone who has played some role in my story, I say, “thank you for being an inspiration!” Because although today seems like it could be my last, I know with certainty that my destination is a place where the constraints of this feeble body will be no more. And so I apply myself as much as I can, without the lurking shadow of doubt to scare me, knowing fully well that ’tis but one chance I have got and so regardless of the cards in my hand, I will do the best I can with them.

Remember that “the real measure of one’s wealth is how much we would be worth if we lost all our money” – Zig Ziglar. Now that is a tough pill to swallow but as long as we remain adrift on the sea of life, we must acknowledge that time and chance happens to all.

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

Adios!

In the twilight zone……

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In the zone

Twilight

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.” – Helen Keller

It has been exactly 907 days ago that I last found myself in this similar office setting that characterizes most white collar jobs and it can go without saying that I am being flooded with memories from the last decade, some with wistful nostalgia and some with the renewed resolve not to ever subject myself to such distasteful experiences that the very memories almost want to make me bolt out drenched in perspiration and puke, but it all makes for a good telling someday. My back is screaming out from the contusions of my vertebrae, but as usual I will still soldier on, despite the pain because it goes without saying that there can be no pain without pleasure.

So much has taken place between my birthday (a couple of weeks ago) and now, and truly it just seems that in all reality, life’s most significant changes occur in the space of moments but the question is that most times, we are so blithely unaware of the changes that we spend the rest of our feeble days toiling with the effort of trying to grasp the changes that have been so magnanimously wrought on our behalf. I am so not concerned with my lack of ability to do so many things because, life is much more fruitful when I concern myself with those things that I can still do with this weakened but yet living body. I began the year on a good note and I still intend to stay true on that path…..recuperating from a sudden bout of allergies and the seemingly gradual route towards getting better care for this body are things that I hoist above my head and this movement disorder, try as hard as you may, I am not yet done.

Talking about change is a subject that is as vast as time itself however when these changes are wrought by no willful choice of mine, then it usually seems to be a mite harder to cope with but what makes for difference is that change is inevitable but what we do with that change is our own signature trademark that we have passed through this life not just as an inanimate pawn but as a piece who is aware that life is one to be lived. I was in the company of one of the nicest orthopedic surgeon and nurse on this side of the continent and he remarked that he was blown away by my personality (as a child, I thought that superheroes were always super cool anyway but I guess it is a thing of choice or else why would there be villains) but I explained to him that we always have a choice to either complain or just make the best of whatever life throws at you. Now this was no carefully scripted media piece but one borne from my experiences as an individual struggling with a rare, incurable neurological disorder. We can choose to see life as a suction pump inexorably sucking out our juices and leaving us with so much bile that we are indifferent to the lives that surround us every day or we can choose to see life as a funnel with which we can share as much of the goodness, grace and blessings that we inexplicably receive each day. Again, it is a choice to be made.

One of the very first idioms that stuck with me all through childhood is that regardless of how thin a slice of bread is, there are two sides to it. Now the question that haunts me especially in my dealings with majority of people is why the vast majority of us are so stuck in twilight zone that we feel obligated to infect others with as much as gloom as possible. Where has all the love gone to? Smiles back in the days were free as in the word free, what is with all the false warmheartedness that so thinly conceals gall and bitterness in today’s world. I always deem to stick with the two simplest rules – love your Creator with all that you have got (it was a gift anyway) and do unto your neighbor what you would wish done to you (if the shoes were reversed), and from my candid opinion, it can not come any simpler than that. Life is like a leaf gently being blown in the winds of spring and just when you think what a splendid time the leaf is having, a gust throws it down the drain and its gone for good. We will never know what number our days will be but we can choose how we number them – making each moment count for the good of someone else because it is only in giving that we truly receive. The best thing to do in times of despair is to give as much as we can and feel a sense of elation and lightness that we not only did but that we were able to.

Would I have done things differently without the scourge of this disorder? I dare to say that I am privileged to be in the position where I can say that pain has no hold over me, it may just make me do things a lot slower but it sure gives me more drive to do the very things  that make just that other person a little better. It has given me the rare opportunity to realize and acknowledge that family is not based on blood only, but in the ability to reach out and acknowledge that each of us is here on earth for a time such as this. Does it suck as much as it sounds? Yes and more, but being able to pick myself up everyday and refuse to remain in the twilight zone where indifference is the theme of the period is what I choose to do each and every day. Being indifferent has never gotten anyone anything, it is definitely not going to change now and so whilst it may seem like the normal thing to do, shake off those eerie chains that so tenaciously yet invisibly hold you back from being a productive you and be different, take a stand for something, dream something and work at achieving it. Stop being bound by the isolation of your office work space and the confines of your work hours (which you most likely hate) and do something else that screams out ‘I am here and I choose to be purposeful’.

Break out of that mould that you have placed yourself in and begin today, it is better late than never. Do something nice for someone else who may never be able to repay you back and watch the seed you have so bravely planted, blossom into such a thing of beauty. Cut a swathe of cheer and happiness as you walk through life and see the gloom of the twilight dispel in your face. Now is the time to make hay because very soon the sun will go down as it must and then you can truly be glad that you did.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Catching The Glimpse…..

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Oh my! Spent last night counting down the hours as I sought the very elusive sleep but that is not the point behind my getting on to my keypad. Yesterday morning I did something that was completely out of character for me.  Mind you, I had a torrid week – frequent bouts of sciatica, each one seemingly more severe than the other and even immediately after my hurriedly scheduled session with my favourite chiropractor and friend, I was almost scissored in two as I was hit by another bout however I guess that is how the proverbial cookie crumbles. Life is consistent in its assigned task of the gradual process of crumbling cookies, whichever way the cookie does stand, someday it gets crumbled – an inevitable end! But in the words of Martin Luther King Jnr “Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man (situation/dystonia/FMD) can’t ride you unless your back is bent.” (emphasis mine)

And so as I yet again dealt with the arduous task of putting on my shoes (I am particular about that task because it certainly brings to bear all the control I can muster up just to perform that seemingly routine everyday chore), I decided to switch on my cute iBush HD television to distract my mind from the associated pains. And I had a mind-blowing experience as I listened to Oprah on Super Soul Sunday hosting popular American motivational speaker, Iyanla Vanzant and as I listened to her story, there were certain nuggets that hit me in the right place and made me catch that glimpse that we all need sometimes in our lonely sojourn down paths that we would never have chosen if we were given the chance to choose. I pushed aside the pain and straightened my back regardless of the tremors and intense pain along my spine because whether we choose to accept it or not, He speaks to us every moment – the question is what we have chosen to listen to.

We are blessed on all sides by gifts but most times we are not prepared to receive those gifts even when we are handed those gifts in hand. And there again, I am compelled to return to my choice subject – chance versus choice. All of us are given the chance to make an opportunity of our lives, whether we choose to acknowledge that we have been created to live a life and not solely existing for the reason of being a statistic in global population. That is an express manifestation of whatever choices we make because the chances will continue to inundate us on all sides and even as I trudge through this tunnel, I choose to catch a glimpse of the hope and rest that awaits me – knowing that every day brings a ray of hope that the cobwebs of depression can do nothing about. I look around me and I see countless others who are struggling with their own pains and hurts and I choose to realise that I can set mine aside and help them realise that in each of our darkest hours, nothing can stop the light from piercing through but it is our choice to catch that glimpse and move on or succumb to the gloom that so eagerly desires to clutch us in its embrace of cold hopelessness and depression.

“Each days dawn is like a recurrence of the first act of the Creation as if again a decree had gone forth: Let there be light. And as the earth whirls on its orbit, there sweeps westward a band of brightness, fringed by the half-light of daybreak. The suns rays, themselves all energy, bring new energy to every living thing.” – Anon E. Moss

And so each new day, I choose to wait and catch that glimpse of light, confident in the knowledge that as long as there is a ray then the whole essence of creation is and can at some moment in our existence be awash with the fullness of the light that so clearly illuminates our weaknesses, resentments, hurts, anguish, betrayals and gives us that blissful opportunity to choose to be born anew shedding all that so easily besets us and forging on with the sparkle renewed in our eyes and hope in our hearts that we can be of some assistance to just that one person who like so many of us have chosen to be swept along the rapid currents of life, not even taking a moment to appreciate the fineries and beauty of creation. I have spent many a nights, tossing in agony trying so anxiously to tell myself that pain is not synonymous with birth. But the truth remains that there must be labour pangs before something more beautiful is birthed.

Not giving in to the crushing weight of helplessness, so graciously expressed by the ignorance of many a physicians but realising that we can choose not to allow our backs be bent by whatever assails us. I was recently discussing with my friend, Mwenya and we both agreed that the time for change is not to be determined for us by anyone but that  the catalyst for change lies deep within us. Regardless of the hordes that trudge past us daily as we struggle with this elusive disorder, nobody can stop us from catching that glimpse associated with each new day. Putting aside the neighing of many, as they pretentiously whisper the usual words devoid of any sincerity and warmth, I acknowledge the few who despite their inability to fully comprehend what FMD is, still yet stand by, pledging their availability whenever the storms almost overwhelm me. I know that it is not about the path most travelled, it is about the courage to walk your own path and dare to be yourself. Pulling myself by my shoe strings and accepting that on each new section of this journey, there will always be just a few out there cheering me on. I admit that I will accept those few gifts, whispered in hushed tones and discreet gestures, knowing that each life I meet – there is something to pass on.

I realise that as the darkness swirls overhead, nothing can blot out that glimpse of hope and like many a sailors, perched on the wreckage of their vessels peering through the fog, someday I too with triumphant voice will loudly proclaim these words “LAND AHEAD! I have reached my destination” and whilst battered and bruised my body might be, my spirit is aflame with hope that victory is certain and sure. “I am well aware of the toil and blood and treasure that it will cost to maintain this liberty, and support and defend what has been so fiercely obtained. Yet through all the gloom I can see the rays of ravishing light and glory. I can see that the end is worth more than all the means.”

Remember, to live a life or simply exist is a choice that must be made, nonetheless the fact is we were created for purpose.

פרידה עד שנפגש שוב בתזמון שלו עצמו

Adios!

The Solitude of pain……

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“Where, O death, is your victory?    Where, O death, is your sting?”

Yesterday, I longed with outstretched arms for my final triumph……triumph over death, a victory sure and certain in Him!

Friday marked the end of a horrid week and just like a child watching the shadows disappear with the dawning of a new day, ironically but whimsically I stayed awake to watch it exit and reach with gladness the joys of a brand new day. And no, I mean it literally because for all of us, death is a subject best left at bay until with cold icy fingers, it snatches away someone very close and dear to you and that is when it hits you; the inevitability of death. And what better conquest than not just to acknowledge there is victory even in death but to also acknowledge that the triumph is real and can be yours when you believe.

Mind you, my longing was not due to the near death encounter I had trying belatedly to get off the Jubilee line, the doors swooshing close with pneumatic force, trapping my companions – my staff (Simple) and my mini holdall. Thankfully, I was not as fast as I used to be because I would have been caught by the doors performing their monotonous yet essential task. Yet again, even then, I marvel at the good in humanity for those who without a thought give it manifest when suddenly a need is thrust upon them. Two commuters, one inside and another outside the train, sprang to life and wrestled the doors open, freeing me with a cheeky grin on their faces even as I bestowed my gratitude on them. For them, it was just another call to duty – these are the everyday heroes who go unannounced whilst knighthoods are being bestowed on people just for the fun of it, for doing what they have always done, nothing extraordinary reminding me again that present day societal life is a whirlpool, sucking the good and expelling flotsam and debris that is frantically clutched to and termed good by the crowd.

It was the realisation as I lay upon the examination table, feeling the gentle hands of Richmond trying to restore blood circulation to my spine and my constantly overworking muscles responding to the chaotic signals being emitted by my brain. The torque like sensation in my lumbar, the pain like the lapping waves of the sea – intense most times and tender but still there, blepharospasm and facial twitches, poor proprioception……just that realisation that even they just like everyone else can never understand how you feel and when I am inundated by the  incessant and more often insincere ‘how are you doing?’, it is also a stark reminder that I am all alone in this and when I look down at the only helping hands I have got and realise even as they hurt that I might just have exhausted all my innate strength to go on, I have a choice – to see beyond the blepharospasm and look upwards, embracing in all humility the inexhaustible reserves of strength available. I have made peace with my best friend after I laid into him after a very aggravating call from one who should know better after nigh on 2 decades.

The question ‘is it curable? can it be managed?’ gingerly put across to me by the lift operator as I made my way to the ticket floor  was one filled with concern and with the clouds already threatening to overwhelm me, I smiled and nodded, still feeling very isolated and alone – not by choice but by the circumstances in which I am in because in all sincerity, nothing brings that realisation quicker than when you are being probed by different medical experts and hear varying comments from these medical experts. They do not understand! Nobody human really can except you have walked those shoes or are walking in them….

“Row upon row of cheering spectators

Crowd the vast arena full

But there is only one man who really knows

And he is the one who faces the bull”

Now if you have ever watched a toreador do his thing with so much panache, you always fail to realise that each time the bull charges at him, that is just a man against over 2000 lbs of rage and muscle. He is a man just like you, and whilst he may be skilled in his act, he is still a man. For many who have been isolated by pain and have given into the solitude of pain, this is for you because I know what it feels. And just as the friendly rail official remarked that I looked very comfortable stretched out on the wooden seat at West Ham (after of course asking if I was alright), I recalled the lyrics of Bon Jovi

“I wanna lay you down in a bed of roses / For tonight I’ll sleep on a bed of nails / I wanna be just as close as your Holy Ghost is / And lay you down on a bed of roses”

acknowledging with clarity and certainty, the unfailing closeness of Him despite all that is going on presently and knowledge that the shadows are being chased back as each new day dawns with its own cache of memorable moments and a new set of unique individuals like mentally impaired Teddy who would give anything just to lay in a bed of roses and that is what keeps me going. The words of encouragement from my best friend and father accompanied with those of  Kalthume and the very few who have and are still standing with me, each day bringing in someone new even if it is just briefly. We are all made to achieve some good in someone else and whether we choose to fulfil that role, the choice is ours. Mine has been made and yet again, I pull back the curtains of despair and reach down with aching and cramped hands to my shoelaces………..and pull myself up again. This is not over until I say it is, I too love the opera and can attain those notes the fat lady can because I am as unique as she is.

“A man dies …. only a few circles in the water prove that he was ever there. And even they quickly disappear. And when they’re gone, he’s forgotten, without a trace, as if he’d never even existed. And that’s all” – Wolfgang Borchert

Today, again I reiterate my choice – I am not just gonna be a mere ripple in this vast waters of life, alone or accompanied. I choose to be an inspiration to as many. I choose to give a shoulder and a listening ear to as many as desire it. I choose to wear out not rust, and finally amidst a blaze of glory, watch as my flames burn down with many a hearts warmed by the special privilege I had of meeting with them. I recall Sanaa, who just turned 12 on Wednesday as she was wheeled aboard the EL2 in her wheelchair under the watchful eyes of her carer, Vanessa. With a huge smile plastered on her face as she tried to make words and cope with her mental challenges, I reminded myself that I have enjoyed the privileges she may never know, for nigh on four decades and so the least I can do is make her smile just a mite wider. With a shy farewell we parted ways and that brief encounter for me gives me the zest to continue, regardless of a body that is responding to chaotic neural signals and the incessant pain. I know that I can and I choose to.

And remember………………we were made to live for His pleasure and not just exist.

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!