Behind the Shroud…

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Seated comfortably in the cozy reception of the Chelsea Consulting Rooms, I resist the urge to make my way slowly but steadily to the park and just lay my weary body down. Had another nice session with my pain physiotherapist and with three appointments scheduled for today, it’s one down and two to go. What better way to spend the moments in between than to chronicle my thoughts about my continued battle with FMD, generalised or myoclonus dystonia – many names to this elusive foe that continues to elude the best of experts and yet cunningly ceaselessly pummels our bodies. Each day, gratefully received with thanksgiving and an undeterred view to conquering and triumphing regardless of the shortcomings of medical science.

Over the last week, I have encountered a crop of unique individuals who unknowingly have given me something new to hold onto whilst contemplating the old and the present. Boisterous Dee who has been a friend from outta the blues but from same origins, a triple feathered hat adorning her beautiful crown and an amazing personality – not battling alongside many of us but she still stands out. Roxy who has shown such feistiness in her own battle, determined not to give into the apprehensive future unknowingly created by many medical experts and a worthy ally in this fight. Pam who has doggedly continued in the paths of her parents, not focussing on her struggles with this foe but determining to change the world one person at a time. Debbie and Jamil, empathetic and yet cheering me on in this battle, the list goes on…….You may now understand how special this past week has been.

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein can’t have put my stance more aptly. Dealing within the last few days with a tumultuous aftermath of a wonderful barbecue, working past a severe bout of sciatica and intense aggravating pain, watching bemusingly as my fore finger insists on differentiating itself from the rest of my fingers…..the list goes on and on. This battle goes on, each day defining itself by the little steps of successes achieved despite the irritating restraints occasioned by a neurological system wanting to be independent, I refuse to be bullied into silence neither will I become a victim because “when I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and could say, ‘I used everything you gave me’.”- E. Bombeck

One thing stands clear even with my wonderful team of consultants, each adopting an approach that’s most comfortable with them, this is a personal battle and there can only be one victor……Me. Regardless of the diverse approaches, there is a limit to the extents to which we can unravel the mysteries of the human body and its complex systems. What lies behind the shroud concealing the answers to our numerous unanswered questions will definitely be unimaginable and whilst we yet struggle with our puny attempts to understand, time passes on and the question we should ask is how best can we make use of this inevitably scarce resource called time. Continue to be fazed and depressed when individuals like us can’t provide the answers we seek or channel our time and talent towards improving the life of just that one person at a time. My choice has been made, there will be no white flag across my door. I will stay in the trenches until I’m out of ammunition and even when I have run out, I choose to lift my eyes up and exploit the inexhaustible supplies available to each of us.

This is yet another clarion call to my friends and fellow warriors, as long as breath remains, there is yet work to be done. Remember that the best way to triumph over your weaknesses and frailties is to assist another with theirs and even when the attempt is rebuffed, be glad you made the effort because in the effort lies victory. The bills may be overwhelming, the pain a constant nuisance but acknowledge that there’s a reason for every season and whilst we may yet not comprehend the reason, acknowledge it is a season and plug in those talents – each of us complete with a unique set…….for what a tale of misery and woe if we choose to allow those talents to waste because it is better to wear out than to rust.

I have to dash (not literally) across for my next appointment but I will remain valiant because that is my choice. Nothing is going to brow beat me into forced submission, my voice will be heard not in tales of woes and misery (the world is sad enough) but in a tale of triumphant victory that despite it all, I conquered and triumphed. Many will come across my path as I will, across many and knowing fully well that in life, we meet to part and part to meet, I want to make those brief moments count. It has never been about the numbers and never will but for the very few that choose to stand alongside me, I raise my hat to you for together we will chart a path of hope, victory and legacies for generations unborn.

Remember, we were made to live and not exist.

פרידהעדשנפגששובחבריםיקרים

Adios!

Bon Anniversaire!

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“In the ladder of lives we are given to climb, each life counts for only a second of time. The only one thing to do in that brief little space is to make the world glad that we ran the race.” – E.W Wilcox

Dystonia Muse's avatarChronicles Of A Dystonia Muse

14605022_s editedA year ago today I pressed the publish button on my newly created, blissfully pink WordPress site, a simple motion that shook my very core with far greater velocity than Dystonia. I’d embraced a new self-view removing shame from my equation, embarking upon an exploration of alien territories within myself and new roadmaps to human understanding.

My blog marked the end of one odyssey and the beginning of another, perhaps even more transformative than the first. I set out with lofty goals – no less than unburdening my soul, sharing deeply felt insights and describing my strange disorder without it sounding like a virulent medical horror, starting with the post pinned to the top of this site. I ventured into foreign lands endlessly more foreboding than the manipulative villain lurking in my brain. I’ve tackled my deepest nightmares of how I might present to others, wildly misplaced self-phobias, misinformed perceptions of disability, even notions…

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Drawing the Curtains……

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Well here I am again, taking solace in the expression of my heart and the everyday encounters that many are oblivious to but with each passing moment, there are lessons to learn, memories to capture and the inevitability of our sojourn here on earth. I’m behind the window side counter of Birley Sandwiches in the very busy Canary wharf, just had to take the weight of my feet before I succumb to the pull of the floor eagerly beckoning……just a little rest, maybe a little slumber but I know that isn’t what I should give in to for now.

It’s amazing when we as individuals choose to give in feebly to the erroneous feelings of the very emotions that hold us captive without acknowledging the meaning of the liberty and freedom we have been created to walk in. I am glad that I made the effort to go across town after having my morning appointment rescheduled, in a bid to understand why some of us cling desperately to what we shouldn’t whilst that which we ought to, floats past us completely evading our unstretched hands. Life in itself is dynamic, putting aside my desire for the solace of the Sloan Square park, I pulled my weary limbs yet again to make this unappreciated trip and console myself with these very words “in the effort lies victory” and so whether my trip across town regardless of my weary limbs, is an effort in futility, I know I am victorious.

I recall my very first role in my elementary school play and vividly recall the huge velvet drapes condoning us of from the vast auditorium filled with parents and guardians, even as we hastily tried to put finishing touches to our respective roles before emerging. Finally the moment dawned and with the flutter of a million butterflies in my stomach and the parting terrifying words ‘break a leg’ still resounding in my ears, I made my way timidly onto the stage and the rest passed in a whirl of vague minutes. As we all made our way to the stage for our stage bow, I admittedly acknowledged that all the hours of practice had come and gone, irrespective of how sterling a performance it was, it was over.

As I ponder upon these memories I recall the words of my just concluded phone conversation with a friend who feels that life without commitment in any form is safest…..”Cowards die many times before their death but the valiant taste of death but once” -W.S….to this I dare say that it is better to wear out than to rust out and he who can but conquer his fears, be it result in a moment of vulnerability or a lifetime of faith unflinching, that is truly a life lived ….

“All the world’s a stage, and all the men and women merely players; They have their exits and their entrances, and one man in his time plays many parts, His acts being seven ages….” – William Shakespeare

As I sojourn through this life, I acknowledge that life is indeed a stage and as we put our final rehearsals to our roles whether wholeheartedly or haphazardly, we must at some point make our way past those curtains and play our role. And just as those huge velvet curtains shield us from our audience, we must emerge and do that which we were made to do. The question that begs asking is how well we played our roles because whether in a lead role, supporting or even as a voiceless member of the cast, life must at the end, like any movie come to a finish, reveal your name and your assigned role.

For many of us, we must come to terms with these options and choose. To simply be in a name in the cast or be more than a name, be a memory that will go unforgotten in the lives of those that we encountered. “You can’t leave footprints in the sands of time if you’re sitting on your butt. And who wants to leave butt prints in the sands of time?” -Anon E. Moss
I dare to believe that we are much more than an unrecognisable pair of butt prints in the sands of time but now we must choose to get off our butts and emerge from behind the curtains and play that role to the best of our abilities because that is what has been assigned to you.

As I make my way through life, besieged by the mysteries shrouded from medical science, I choose to make sure that no double plays my role and whether I am weary beyond imagination or isolated by incessant pain experiences, there are multitudes out there beginning with that one person who just craves an injection of hope, a glimpse of some ray of light in their darkness, a kind word or gesture, a token to say ‘you’re not unappreciated or alone’…..and I choose to be that answer to that unheard prayer. And just as I’ve had and still experience the joys of fatherhood in the life of my daughter and share similar moments with other worthy parents, so also do I look forward with pride to seeing the results of seeds sown blossoming in all of its finery.

We all have a role to play and someday, we will know beyond a shadow of uncertainty whether we treated life in itself as a stage or just chose to ignore and continue in our deceitfully spun cocoon of falsehood and lies. Make your appearance on life’s stage such a memory in the sands of time with each day that we live in, that when the curtains are finally dropped, ours will be a life devoid of regrets. Now I must continue my journey, for every second counts and I want it to count for something and for someone so get out of that comfort zone and make your stage appearance such a phenomenal one that even after your exit, your audience will forever be glad they met you.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

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!

 

Plunging Deep…..

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With a level 3 heat wave warning already being broadcast, the very first thought that crosses your mind as you step out into the streets is the alluring image of yourself in gaily coloured swim trunks, abs defined, plunging into a  cool swimming pool (preferably isolated for people like us) with a poolside bar that serves chilled daiquiris with the umbrella thingy and a rainbow straw or a chilled tumbler of well prepared chapman with bitters and then with the harsh brightness of the wonderful sun, suddenly you realise that the mind really can play tricks on you. Watching people of all sizes and shapes, many in very indecent apparels (all in the guise of getting a tan), you can only but appreciate the beauty of the seasons. For with every season, there is a beginning and an end, and the teeny weeny differentiator for us as individuals is choosing to pull out mid season or holding on till the end of the season and the commencement of a better one.

I have not been able to muster the funds for my standing air conditioning unit so I’ve chosen to utilise my little halogen fan and basically ride out the season (save myself a couple of quid especially as I am seeing my Pain Specialist on Friday and my spine popping Russian this week too). Admittedly, I have to admit that the last few days have been so filled up with appointments that at the end of the day, being passed through a huge milling machine is kinda like an understatement and when the questions come, I can only respond that certain things I just have to do myself even at my own toddly pace. As for the strength, you know as I do, I have run out of mee own strength reserves but thankfully with an upwards glance, I acknowledge that there is an inexhaustible supply which I gladly choose to exploit.

Now again, just as one of the many perks of being in this medically challenging period, I was privileged to listen to one of the most unique couples in this part of the world recount their tales of utilizing their time and God-given potentials to change the world one person at at time and it especially came on the heels of a video clip, that my solicitor and friend sent me of the shameless display of thuggery and sheer insanity in one of the ‘hallowed’ chambers of parliament in one of the states of the self acclaimed sleeping giant of Africa and it is in indeed no wonder that things have gotten this bad and obviously still will because I was also opportune to watch the debate between Tony and Ed which was almost like a game of who can provoke the loudest laughs in the chambers. Clearly a huge difference between both scenes but the message is clear that whilst we choose to do nothing, let us loudly remember the words of Helen Keller “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.”

Aboard the District Line, we were regaled by a pair of jovial fellows with a guitar and a violin, as they chose to play and make that little moment something worth remembering and in response to my question, one of them remarked ‘we just do it for fun’ and I add life is too short to spend all the time on the dive board awaiting the perfect moment to dive in. I say, just plunge in and get swimming! For a huge number of us, we choose to spend more time on the sidelines being very vociferous even to the extent of being obnoxiously annoying when all that is needed is just for you to hold your breath and plunge in. Get those energetic words into action, life is way too short to spend it all on the bylines, sending out video clips on youtube and doing absolutely nothing else is abysmal. Like I always say, begin with that one. You may not know the decision makers for your borough but you do know your next door neighbour who has tons of decisions to make and whether we want to admit it or not, those decisions can very well alter your own life. Remember the story of the cow who was so indifferent when the mouse came complaining about the trap the farmer was setting, well life is cyclical and so opt now to do something about that issue that seems so unrelated to you.

Lyndon Bowring (CEO, C.A.R.E) shared one of the most memorable moments of his life, not from his offices across Westminster, not within the rooms of 10 Downing Street but in the steps of the Oxford Station (if I recollect clearly). Just as I advice everyone I come in contact with, do not ask ‘you doing alright’ just because everyone else says it but ask it with sincerity and expect an answer because you do care. So Lyndon came across a laddie vending the Evening Standard and asked him the question………and waited for the response. Wait for it……the laddie with a grimace revealed that he was so sorely pressed that he needed to dash across the street and avail himself of the restroom and was only hoping for someone who would be kind enough to cover his post for a couple of minutes (nobody is really that fast…lol!). Now there was Lyndon, briefcase in hand confronted with a need and with a second to choose, he offered to help. Within seconds, briefcase plunked down by his side, there was Lyndon (not just any person) vending the Evening Standard whilst the laddie hurried off to do his business. In Lyndon’s words, those moments remain one of his most memorable moments and permit me to say that those very moments are so hurriedly passed by when they constitute memorable in every letter of the word. Yeah, he sold off quite a few and was just getting into it when the moment passed but he plunged in and got refreshed and continued with a lesson learnt.

It is not always behind the doors of Parliament that lives are influenced, yes, decisions concerning all of us are made there but for many of us who are awaiting that moment when we can strut through the front doors of 10 Downing Street to the awaiting paparazzi, every day presents a unique moment to plunge into the life of someone and make a difference. I have this to say to the many professed Christians “Christians have no business thinking that the good life consists mainly in not doing bad things. We have no business thinking that to do evil in this world you have to be a Bengal tiger, when, in fact, it is enough to be a tame tabby—a nice person but not a good one. In short, Pentecost makes it clear that nothing is so fatal to Christianity as indifference. ” -W.S Coffin Jnr

We are regaled every waking moment with delightful opportunities to plunge in and get refreshed by doing just lil bits of kindness and good to just one person, but alas many of us choose to watch at the sidelines forgetting that life is a moving train and you definitely cannot be motionless on a moving train. With a series of severe back flares yesterday under the keen eyes and hands of JOIV, I still had to answer the call of my good friend who just returned again from the hospital for the second double bypass surgery in less than three months. And even as we sat chatting, I chose to make it memorable by reminding him that we are all alive for a purpose and in moments like these, when we awaken after a life threatening medical challenge, the onus lies on us to make better use of the days we now have. It does not have to be when you are incapable of speech and bereft of movement that we are compelled to make that choice, we can choose to plunge in now. I may be incapable of walking the miles or giving lengthy encouraging speeches however I have chosen not to be trampled underfoot by this disorder.

I choose to live, and not just live but live refreshingly through the lives of the very many fascinating individuals I come across. Like Teddy, with severe Down’s syndrome, who was joyously showing off his brand new wristwatch to as many as he came across. As I watched with dismay, the looks of annoyance flashing across the many faces he shared the moment with, when it was my turn – I delightfully exclaimed his was nice but mine was even nicer and just that response evoked a gentlemanly kiss on the back of my hand as he and his fellow mentally retarded peers were headed away. Now that made me beam indeed because “It seems to me that no matter what religion you subscribe to, acts of kindness are the stepping-stones to making the world a better place–because we become better people in it.”
― Jodi Picoult.

Let us take that plunge today, and I am all ears when it is time to share how refreshing an experience it was.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

Lending a Hand…….

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It has been such a sunny summer that I am toying with the idea of getting an air-conditioning unit off Gumtree as soon as the funds avail themselves anyway (Opportunity cost). Anyway, yes – nice UV rays, some warmth and basically loads of activities as usual. I have been inundated with messages from quite a few distinct persona and yes, in the words of Jim Elliot “He is no fool who gives what he cannot keep to gain that which he cannot lose”. I would count myself no fool because according to my pa, I have done only two foolish things in my life, and these occurred in the last two decades of my life so count me no fool. However Jim referred to the invaluable and essentials of this life and that for the hereafter, so letting go is therefore a sign of wisdom. Mimi, thanks for being such a unique individual and wonderful mum.

I had a telephone conversation with a long time acquaintance and she regaled me with an intriguing story which I would kindly want to share here because in more ways than one, we are all faced with this issue of making a choice of what to let go and this encapsulates a whole lot of things – our ideals, ego, material goods et al. So here goes, a youngster was walking along the edge of a marshy swamp when he espied a crab struggling to make its way out of its marshy snare and out of fascination, he spent some time watching it make effort upon effort to get out and like many a kind-hearted soul, he chose to aid the poor creature out of its obvious miseries and so without a thought, he reached out a hand and the result was obvious. With a yelp of pain, he withdrew his hand as the poor crab reached out with its hand to grab his. Not to be put off from his rescue mission, he persisted and with each attempt, his yelp grew louder. After a series of painful attempts, he plunked down by the spot utterly confused until an elderly man came by.

The greatest bestseller states thus ‘in the multitude of counsel, safety exists’ and so he shared his plight with the elderly man (note however that age and wisdom are not synonymous but this was an exception). With a look of bemusement, the man pointed out to the youngster that his was a worthwhile venture but he failed to recognise that the crab had pincers at the end of its hands and therefore was not intentionally hurting him and so he needed to let go of his original attempt and device another means of reaching the crab without using his fingers. With a burst of adrenaline and a quick shout of gratitude, the youngster broke a tweed and reached out to the tiring crab with the tweed, the rest is left to your imagination. And no, the crab did not turn into a beautiful princess who he married and together lived happily after. It scurried away and the youngster learnt a valuable lesson because life is filled with learning curves and choose to learn we must or else we may not survive when life compels us to.

Now, what was so intriguing about this story is how similar to the youngster many of us are. We are confronted with a situation and without a thought, many of us launch into a good-hearted rescue mission without actually contemplating the complexities of each particular scenario because remember we are a population of billions of unique individuals, each with a different purpose and the ability to choose regardless of whether these choices are right or wrong. (And yet again, there remains a few of us, who choose to do nothing whilst expecting the crab to reach out a hand and then we can help – I hate to do this but WAKE UP!) And like many, we are inadvertently swamped by our ill preparedness and reluctance to acknowledge that life in itself is dynamic and so we ought to admit that change or letting go is oft the best option. Take out the old, so the new can come in. “Strength lies in differences, not in similarities” – Steven Covey

Meeting my Specialist pain Physiotherapist was such an enjoyable time because it afforded me yet another opportunity to learn something new and even as I continue down this path of recovery and healing, hope is a choice that I make every waking moment. Hope that each day will present me with another opportunity to meet a new person and hopefully make an impact in that person’s life. Hope that even as I let go of the very things I could do with ease in days past, I create room to learn new things; learning to use my left hand when my right hand is severely hurting with cramps, learning to listen more and speak less because speaking a lot can be quite painful even as my vocal cords get thickened and I start stuttering, learning to just be still because my back hurts so badly and realise that He speaks in every waking moment of my life. Learning that even the consultants are limited in their knowledge and so basing my joy on their report is an exercise in futility.

I met an outstanding individual today, the Chief Executive Officer of Hope For Justice, an organisation devoted to rescuing lives from human trafficking and modern-day slavery. And even as he shared his organisation’s goals and objectives, it reiterated the story of the crab and the fact that we just have to let go of traditional patterns to reach the many unique individuals there who are struggling for hope and justice. The question that begs answering is what are we doing with the time we are all blessed with – “Think about it. Everyone gets the same twenty-four hours in a day. But only a handful realize the value of time. Make sure to utilize your time wisely. Don’t pursue unattainable goals and remain disappointed. Real happiness lies in enjoying every moment of your life, doing what you wish to do. Build your life, minute by minute, with memories of love, kindness, and courage. Reflect on the words of famous people. Understand their perspective about life, and gain new knowledge.” Anon E. Moss

As I look forward to a new week filled with hope and promise and opportunities, I can only tell myself this “Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.” – Booker T. Washington, and with each waking moment, I appreciate every obstacle this neurological disorder has placed because in overcoming them day after day, I can truly cherish the little triumphs and enjoy the lives that I encounter daily.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

Letting go…..

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Back in the days as kids playing around and being fascinated with the beauty of nature and its many mysteries, I recall catching my first butterfly with its gaily coloured and delicate wings. Placing it in a ready matchbox, I dashed home to show my prize and heard one of the most profound statements and still today, a fundamental guideline for my life….“Some people believe holding on and hanging in there are signs of great strength. However, there are times when it takes much more strength to know when to let go and then do it.”
―Ann Landers.

One thing we really have no power over is what life throws at you, what we can do is choose how to react or respond to those situations and therein lies the distinguishing factor between the great and the ordinary. The other day, we gathered as a church to celebrate life without limits, without the boundaries of human limitations and frailties and the overwhelming knowledge that we are all uniquely created with gifts to share and purposes to be met. And even as the warm rays of the sun brightened the park, it was a joy to behold life and celebrate it, regardless of my neck brace, disc doctor and my able staff of authority. It was indeed an opportunity to choose yet again to redefine who I am and what I can do with the very lives I encounter.

Just like the mystery of nature, so also is the mystery of the human body or more precisely the human brain, and even as I still recall my last consult with my neurologist – I still acknowledge that there will always be certain aspects that will defy our grasp regardless of how much we want to reach out and comprehend. As I mull over our discussion, she was honest enough to point out the fact that Movement Disorders are still unexplainable, kudos to her because I really did lay into her because it does get infuriating when the so-called experts cannot even admit that life is a constant learning curve. You can never know everything about something so it is best to learn something about everything and don’t stop there, implement the knowledge you have obtained and move on and learn some more.

For many of us, we are constantly assuaged with the desire to keep holding on to that elusive fantasy and just when we think we have gotten it, it hits us in our guts that strength is really defined by the act of letting go. Someone said ‘ Maturity is being able to say no’ which to me is another form of letting go and whilst we rush around with our many aspirations and dreams, let us remember this – the real strength of character is not defined by what we can grab but what we can let go. Admittedly, it can be painful at times but I dare you to compare your situation before and after you truly let go. I have chosen to let go of so many things and some have shred my heart asunder whilst others have been a walk in the park, however I can say that I am better off for we were born with nothing and depart with nothing someday we will.

My dear friend EE finally achieved closure the other day when she ran into her ex-husband after so many years, and because she had painfully let go, she was able to walk to him head-up, eyes a-twinkle and say hi. Now as she regaled me with that chance encounter, I could hear the triumph in her voice because that was a won battle even with the scars that serve as reminders, letting go had given her that edge she thought was unreachable. Today, she is an example to many out there who think that letting go is an act of cowardice, and even as she prepares to renew her vows again – a distinct persona she truly has become. It is such a privilege to have encountered you. I could go on and on with tales of ordinary individuals who have made that choice to let go and inevitably the end is always the same – triumph, victory, unimagined self-development and add flair and finesse to that picture.

I have an appointment tomorrow with a specialist pain physiotherapist (and of course there is a lot of trepidation and apprehension), yet another doctor again but one with such a scary title and still I choose to let go of my fears and accept the fact that I will always emerge on top regardless of whatever comes my way. I have let go of my privacy and chosen to share my story with as many as would give it a read because in the end, we are remembered for what we gave and not so much as what we received. Change is said to be the only permanent thing in life and the question is why then are we so terrified of change? “We can’t be afraid of change. You may feel very secure in the pond that you are in, but if you never venture out of it, you will never know that there is such a thing as an ocean, a sea. Holding onto something that is good for you now, may be the very reason why you don’t have something better.”
― C. Joybell C.

Walking this journey, most times alone, has been such an exhilarating adventure because it has made me realise that there are people out there who believe they have everything when in retrospect they have got nothing. John Ruskin aptly puts it thus ‘A man wrapped up in himself really makes a small package’ and I dare to add that letting go is the surest way to be as expansive as you were made to be. Look deep into yourself and ask yourself this question, what am I keeping so hard that it is causing me pain? Why am I choosing to  endure this anguish just to present a facade which is a front hiding the real you? Where can I truly give off myself to allow change take its course and re-emerge like the proverbial phoenix from the ashes of its cremation? There is more blessing in giving than in receiving – those few words surmise one of the greatest principles in life and remember that one man gave his life that we may be who we were really meant to be. What an amazing example to emulate!

It is almost midday and I have to start preparing to go meet my spine popping Russian as described by my lil brother, I have to let go of the confines of my room to enjoy the warm weather and some pain as usual but I am glad for this day. And irrespective of how many let downs I may have (especially from those closest to me), I am thankful for the ups too from the elite chosen few and look forward in faith to being who I was made to be – a blessing to as many as I can reach even if it is just a friendly hello or a warm smile. I want to leave you with these words of C. Joybell

“A star falls from the sky and into your hands. Then it seeps through your veins and swims inside your blood and becomes every part of you. And then you have to put it back into the sky. And it’s the most painful thing you’ll ever have to do and that you’ve ever done. But what’s yours is yours. Whether it’s up in the sky or here in your hands. And one day, it’ll fall from the sky and hit you in the head real hard and that time, you won’t have to put it back in the sky again.”

Truth remains that when you let go, you let God and what an amazing return you are sure to get.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

My Journey (2)……

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Never make your home in a place. Make a home for yourself inside your own head. You’ll find what you need to furnish it – memory, friends you can trust, love of learning, and other such things. That way it will go with you wherever you journey. – Tad Williams. As always, it is good to be back home. Pretty exhausted after a trans-continental flight but with mixed feelings about my inability to keep you in the loop as desired. Reasons ranging from location and technological restraints are the guilty, however give me a tree and I will carve it on the bark awaiting that one passerby who will not be too busy to just stop for a moment or two.

It is universally acknowledged that money answers all thing but draw the line at making it your mistress or master, that is a path many have walked and never returned. Spent some wonderful moments with family and friends but remember that there are two types of family, the one you were born into without a choice and the one you choose to be part of, nonetheless it is so much joy when there is an intersecting set of both. I have come away rekindled and ablaze with a renewed confidence in this fact – we never walk alone. From the friends made along the way – Bina, Paul, Moses, Christy, Cynthia; the list is endless to those who willingly and unreservedly gave their all just to associate with me during these tumultuous season, I can only but say these “kind acts irrespective of how little they may be always have the ability to send its roots down and yield’

I had a wonderful reunion with friends and brothers who sprung to arms without a thought or two, it has been nigh over 2 decades and yet footprints let behind on the sands of time are never truly eroded no matter how fiercely the wind blows. Como, Cyril, Bubay – my thanks because it’s in the effort, victory lies and whilst you may yet grapple with fitting in this conundrum into your already busy schedule,we can as long as there is a will and no matter how little that spark may be, it has the potential to birth a roaring inferno. I have returned with a brighter perspective, a renewed zeal and a desire to bless as many as I can because what good is gold in our hands when the very next person beside us has but dross in his. We have been blessed to bless and if you are here asking what blessings you have got – be thankful that you can read this, there are many who cannot.

I saw Dr Marion and it was a nice consult. Functional Movement Disorder or Dystonia cannot curb me or put me down and as long as there yet remains breath in these weary bones, my message of hope and encouragement will go on. Permit me to borrow the cheeky words of Paul “when life tosses lemons at you, catch them and make yourself a drink – add some vodka if your predilections tend that way’. For the many who were honourable enough to actually meet me and draw some inspiration, I say thank you for being different. Jummy, for going the extra mile and not being a cry baby (it would have broken my heart). Irene, for being selfless in her job. Stella, for kicking ass on my behalf, LM for seeing me as a person,Shirls for the calls and for EE, the most unique and amazing individual I have come across,, sacrificing all and more. Needless to say that ” I have learned more about love,selflessness and human understanding from the people I have met in this great adventure in the battle against FMD/DYstonia than I ever did in the cutthroat, competitive world in which I spent a great part of my life” – A.P

Her diagnosis – it can get worse because our brains are so unique that if we only knew better, we would treasure each waking moment not by zapping off to eke out funds but to take some minutes and just be thankful. Reach out and plant a seed of goodness in just that one person, be it by asking the usual pleasantries and really listening to the feedback. Undeniably, there are many out there who are as unscrupulous whenever there is an opening but again remember that no matter how thin a slice of bread is, there are always two sides so yet again choose what side you wanna look at. Each day,I am  privileged to see champions in life, who having been denied of the very luxuries of every day life, yet are not driven to despair and depression. Out there on social sites, making their voices heard – we can and are entitled to the very best life can give because that is exacty who we were made to be VICTORS in life and regardless of the incessant pains, the apprehensions of tomorrow, the limitations of medical science, there is a truth out there – you are who you choose to be; cervical dystonia or not, rheumatoid arthritis or not, paroxysmal dystonia or not, MS or not. For although our bodies wither away as is the way of this transient life, our spirits are ablaze and ignited with hope that we are not ruled by the strength of our bodies but by the inexhaustible reserves of our spirit in God.

Lacing my own shoes might be an exercise in its own rights but heck! I sure can still lace them. Not having 90 degrees rotation to my neck does not prevent me from teaching myself to process things fast whilst they are still ahead of me. Not being able to put my back through those usual maneuvers has not denied me the fact that I still have a back regardless of the excruciating pain made lighter with the use of traction devices. I may not be able to touch my toes but I sure can see them and they look still as great. Being stared at in public by the ignorant will not drive me to depression, it only affords me the opportunity to increase someone else’s knowledge base and make just that one person more knowledgeable. There are battles out there we fight each and every day and whilst we are all uniquely tosses into our own arenas, remember that

Bullfight critics ranked in rows
Crowd the enormous Plaza full
But only one is there who knows
And he’s the man who fights the bull.

For me,I have my choice and in the words of my pa, it is the side that stays longest in the trenches that wins the battle so for you out there,dig in and keep on repelling waves of attacks upon attacks for in all sincerity, every season has a beginning and an end. To my many followers, my heart goes out to you in appreciation for that kind word, kind gesture, sacrifice. Someday, we will stand arms linked and sing our song of victory because you are part of my story. You give me that boost and drive to do more than I ever thought I would do because I know whom I belong to and I know what His Plans are for me.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

 

MY JOURNEY…….

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This is going to be like a journal of some sorts and as the word goes, it is an expression of my various encounters and my continued triumph over the neurological disorder termed dystonia. For the benefit of the countless who are still  ignorant, remember that the message is always in the details. DYSTONIA IS NOT A DISEASE, IT IS A degenerative DISORDER! And going by the dictionary definition, a disorder is a physical condition in which there is a disturbance of normal functioning while a disease is an impairment of health usually caused by a pathogen. Kindly desist from making some of us pull out our hair in frustration and it is worse when confused by a medical practitioner who ought to be in tune with dynamism that accompanies everything in life, careers and professions inclusive.

Which reminds me of a hilarious episode in a divorce proceedings which I am keenly following whenever possible. The parties in dispute are individuals just like you and I, and as the case where maturity usually precedes the natural bestial nature of man, the man has opted to seek redress and dissolution by going through the appropriate channels whilst the woman, a self acclaimed and proven pseudologist, (note that not every female is a lady) despite being an epitome of shamelessness and a walking catastrophe cannot but revert to being bestial irrespective of her ‘decent’ origins. Well that said for the two, the counsel representing the woman (again note that birds of similar plumage can only flock together) was so severely trounced by his counterpart – a younger attorney with decades separating them in terms of practice that it was actually bemusing to be reminded that stagnancy in life is worse than being dead.

No matter how hard truth seeks to be muffled, in the end, freedom and true liberation comes only from acceptance and acknowledgement of the truth. As we watch with bated breath, the health struggles of Mandiba, the legacies fought for and left behind can never be eroded. That the actions of a simple illiterate black lady who refused to submit to the oppressions of apartheid has become one of the most notable events in black Africa only drives home the point that in every one of us lies the resolve to make a difference in the world. If each one of us can tell ourselves that truth, then what a wonderful world we will live in. A simple black African-American Minister, just like anyone of us dreamers dared to be different and today, decades after his demise, his words still ring loud and true.

As I contemplate on the events going on in my life, and the seeming uncertainty of the future, I can still proclaim that there is hope as long as you can dare to grasp it. Angelina Jolie, in yet one of her sterling performances in “Changeling” ended the movie with these lines…….’now I have gotten something I have always looked for. HOPE’. What else do we live for but hope that there will be a better tomorrow? What else will make a previously healthy individual, now seemingly bested  by dystonia, still able to make his voice heard and proclaim to as many that life is not determined by the state of your physical condition but by the strength of your spirit. And what determines the strength of your spirit, is the source of your strength. I know what my source is and I choose Him over and over again.

Little gestures of kindness, a friendly pat on the back, a friendly smile are inexpensive acts which cost us nothing but are received with much appreciation. I made a new friend in Zimbabwe and her husband is dystonic, and all she needed were just a few words and some empathy because whether we like it or not, irrespective of what we are going through, there is always strength to offer a helping hand. What helping hand have you offered in the past twenty-four hours? How many words have you directed towards someone on the other end of the divide? What act of kindness have you shown someone else apart from yourself in the past twenty-four hours? These are the very things by which our own lives will be measured at the end of all things because it is not so much as how much you intend to but what you really get done that matters.

One of my very good friends, Hody is finally getting married and I celebrate with her because hers is a story of choosing to triumph over life’s unfairness. In as much as she can look back at it all with a strength of spirit formed over the years, I can attest to this fact that we are the only ones who can change our lives however we should not be content with just our lives but endeavour to reach that one person who is also going through stuff. Hody, knowing you has been a privilege indeed and just like you always say, remember to do whatever makes you sleep at night especially as you wade the waters to begin a new life with your physician and teamie.

I am seeing a new Neurologist in a couple of days and as I anxiously prepare for that meeting, I know that my choices have already been made. For the rest of us out there, who are contemplating life’s sometimes aggravating tantrums, remember that the will to live is also a choice but the passion to dare to be different is a battle that will be continually fought and even now, you can determine to be the winner because the truth is that the victory has already been won, it is now up to you to cease that victory or continue to wallow in the squalor that life has tossed you into. Get out of the muck and live a life of purpose.

I leave you with the words of Johann Gottfried Von Herder, “Without inspiration, the best powers of the mind remain dormant. There is a fuel in us which needs to be ignited with sparks.” Do yourself a world of good and inspire yourself, utilize the best powers of your mind and dare to be you.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

BE DIFFERENT!

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DIFFERENTIt is yet another beautiful day as I look out my windows and just enjoy the stillness of the moment. To many, it is just another day but for a few, it is a new day completely replete with its own portion of ups and downs, joys and despair, achievements and failures – summarily it is a different day. With a temperature of 17oc, it is truly an amazing day to possibly get atop a power bike and let your hair down even as the wind courses through your hair and reminds you with startling clarity that you are alive in today. Remember that today was yesterday’s tomorrow so if for nothing at all, bask in the fact that you made it through.

I recall vividly with a smile creasing the corners of my mouth, one of the very first lessons instilled in me by arguably one of the greatest men that has walked and is still walking the earth. My father! “Always remember that the greatest battle we all have to fight is to constantly be ourselves in a world that persistently and consistently wants to make you someone else.”

Now, I can understand the meaning of every word in that sentence and wish today to share it with you even as you take out time to go through this piece. Of-course, there are a million and one things vying for your attention but Opportunity Cost….right? As at the last time, I paid attention, it was said that billions of humans inhabit the earth and guess what, there are no two identical humans. Siamese twins? Nope, I am getting down to the nitty gritty of high school biology – the chromosomes and genetic make-up can never be the same. In other words, there are billions of different humans inhabiting this earth and so the questions comes a-begging, why settle for something less than who you were made to be? Different.

Last night, I watched Piers Morgan as he gave room for David Cook (I think) to let us into his mind (he is presently incarcerated for life for murdering both his parents) and what really stunned me was when he was given the opportunity to reach out to those who could be contemplating similar acts. In his words, ‘I know what you may be going through right now, and the events that may be pushing you to take that plunge. I can assure you that I have been there and it is not worth it……..’ Now that brief clip reminds me yet again that irrespective of the circumstances life seems to always leave you in, there is the issue of making choices. And because we are made to be different, we all have to make different choices.

Now one of the ‘beautiful’ things about being dystonic, is that without seeking my consent, I am compelled to be different; the very thing I have always strove to be. Now it makes me doubly different, isn’t that just a blessing. And even with this incapacitating pain that recently began on my right foot and the traction devices that I wear regularly to ease the cervical tremors and the pains of sitting and/or standing (I only need a costume to complete the look because the world really needs super heroes). Living with dystonia is a blessing in disguise, funny right, considering that there are only about 70,000 UK residents living with dystonia so that makes us a small community and being able to be on the same page with even a tenth of that is simply an awesome opportunity and a unique pedestal to reach across and touch the lives of just a few persons beginning with that one person.

Why are we so scared to be different? What prevents us from daring to be different? Care to know what my answer is? Nobody or nothing, just YOU. I was talking with an old high school mate and making him aware of dystonia and as he was expressing sincere concern for my well being, I reminded him that sometimes, especially when least expected, life has the funny habit of throwing you a curved ball and you had better swing as hard as you can because that ball just has to be dealt with. And mind you, those balls are hard and can really hurt when taken in the face of the body. So keep swinging, practice makes improvement.

Vivian Stanshall captures it so succinctly in these words “I’m not different for the sake of being different, only for the desperate sake of being myself. I can’t join your gang: you’d think I was a phony and I’d know it.” Now what better way to express life’s greatest battle – a desperate fight to be different, heck! That is how you were made. The worst life lived is being on the band wagon with everyone else, you do have company and you are just another face in the crowd but then what happens to the real you. Sucks! Why not dare to be yourself? Be proud of who you are because these days, if you don’t blow your trumpet (by being yourself), someone else is going to take that unused trumpet from your limp hands and blow it for himself.

Begin today when you arise from your bed or wherever you passed the night and look yourself in the eye – use a mirror or get to the nearest puddle, and behold an astonishing Masterpiece. If the Louvre in France can hold such a collection of acclaimed masterpieces created by individuals just like you, what prevents you from creating your own niche regardless of how small it may be? The world is large enough for everyone and sometimes when I pass by the cemetery, I wonder how many undiscovered geniuses are entombed there with nothing but just a few words etched on their headstones and some distant memories left behind with just a few persons. You can begin today, but remember that even as kids, your first fistfights hurt like nothing you were prepared for. So be prepared, this is a fight that is going to call upon every lesson that you learnt or should have learnt along the way.

For many of us, Elijah Woods is just a kid but hear what he has to say (which again reminds me that age and wisdom are not directly proportional) “I think being different, going against the grain of the society is the greatest thing in life”…hmmm! Age is indeed just a number, what counts for us are the amounts of trials we have gone through and emerged scarred but triumphant. Today, we are yet again faced with a choice. Deeply contemplate these, the choice to be you, different and unique or to be just another fleeting memory in the minds of a few. There is the choice today, to dust yourself up and start to live a life. The greatest tool in the world lies within you, remember that centuries ago, people just like us without the most obsolete equipment but just their hands almost put up the world’s tallest building. They wanted to be different, what is that thing preventing you from reaching out and changing lives for good, starting with that one person.

As I exchange experiences with my friends all over the world living with dystonia, my message remains the same – We are the ones responsible for making the choice to live a life that counts despite the handicaps and limitations we face. Nobody can change your life for you, only you can. And it must begin with a critical self assessment of who you really are and even if I have never met you before, I can say this about you – there is just one of you and that makes you THE ONE (like Keanu Reeves role in the Matrix). Make the right choices, ascertain what you were created for and plunge into that uncharted territory. You are a winner, I am rooting for you.

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

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!