Category Archives: My Journey

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!

 

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!