Tag Archives: Disability

Wave upon wave…

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Adrift

“You can’t wait until life isn’t hard anymore before you decide to be happy!” – J.M ‘Nightbirde’

It’s not about the decision but rather the elusiveness of happiness. Battered over and over, each wave harder than the latter, yet the stone quietly disappears still glistening, every encounter ripping a piece of my soul. Would you let me see beneath your beautiful, each shuddering breath anticipating the usual no? You don’t know me, you don’t see me but you clamor like the earth and its fullness is yours? How much longer can I bear this weight? How broken am I? Perfection, an oasis in the shimmering distance, unattainable yet teasing.

My clenched teeth hidden behind a smile is the only visible sign of the agony that besets me with every breath. Love surely doesn’t live here anymore however beneath my tent, I still hear the raucous laughter of the naive, the barely concealed glee of ill gotten weight, pockets weighted down that they burden you unknowingly. Here today, gone tomorrow; saddled with the burden of keeping count, I’m almost terrified to look at pictures just to acknowledge the spaces that once were occupied. How much longer can I go on? My question is rhetorical because the silence just magnifies my inability to comprehend.

Dreams disabled? It takes nought to do and still the dreams shatter but not the ability to. It’s eerily quiet at the moment and despite how hard I try, this is a moment that just won’t disappear. Where do broken smiles go? Where are they buried? Forget the fading applause, the night is certain in its duties. Disregard the glitter, they are but crumbling dust in my hands. The whispered terror, the blood shed, the victory won; it’s a maze I’m in but with each passing second, my limbs can barely function. This can’t be my home because I’ve walked the streets of grandeur once, hope is all I’ve got now and like the sand in the hourglass, it trickles away.

Just before this flame is extinguished, I grab the next candle, all but wax….hope remains surely. In the twinkle of an eye, the breath ceases and with the silence, I can hear it no more. Fifteen men on a dead man’s chest? Begone vile ones for he too deserves some peace. Your rum laced breath, overpowering as you prerorate, nothing is yours, you seem to forget. Naked you came in and naked you’ll depart, how do you so easily forget this? There’s no mountain high enough to shelter you, no valley low enough to hide the echo that resonates with your foolish gestures.

The years go by, and I find joy in the seed of my loins. Nothing can be done that hasn’t been done, yet still I refuse to cease my search for light in this overwhelming darkness. It’s not my garment of choice, each gust of wind blowing away a piece of my tattered cloak and still I must choose. When will the end come as I continue on my journey? What companion awaits me ahead is a question I cannot answer however I must ask. And if the ire is unleashed, what do I fear cos there’s nothing left.

70% hypothesized, but the tears so fast-flowing gives room to doubt. In my lament, I know there’s a message for any who cares to listen. You cannot cry me a river, the drought has been long and severe, cruelty is its driving force. The cold gnaws to the inside and all warmth is almost gone, and still I’m here; hope for the future, my only respite. In Your Arms, I find refuge and although comprehension might not be there, I’ll take what I’m given and yet hope. My strength has since depleted, the hollow echo bearing witness however it’s not by strength.

Cast adrift like flotsam, the waves are even more brutal, a purpose to be fulfilled regardless of how empty I fill. My journal has more endings and I hope, still I hope that there are also beginnings. Not the beginning of a journey, this one I’m yet to complete but rather the beginning of a restoration. I’ll yet hold on even as my sinews come apart and my ligaments give out, it’s nothing new but this I know “A man who has not prepared his children for his own death has failed as a father.”

Rest in peace, GED, OEBI, CD, RCB, PKW, NOC, CJO, JNM, KL, PZ, WS and may your memories be blessings to us.

….bathing in the rain!

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Image result for bathing in the rain

It is exactly 12 years to this day that I unilaterally took a leave of absence from my cozy job with one of the globally recognised brands in the banking/financial industry to sign up at the orientation/boot camp for the Direct Short Service Corp into the Navy. To many, it would have come across as an act bordering on the vestiges of insanity but for me, I had become completely fed up with the monotony of the regular 9 – 5 and just needed something more adventurous. Being put through the paces was no exercise for the faint-hearted especially after the daily wailing of the bugle interrupted whatever respite I was trying to have. Nonetheless, this was what I wanted.

Today, I have no regrets because from that decision, my life took on so many twists and turns that being in a maze would not be too much of a stretch for the mind. Five years after that decision, my neurological system opted to become autonomous and I plunged headfirst into an unfamiliar world of neuroscience, neurologists, dystonia, myoclonus, sciatica, insomnia. Pain, both external and internal, became constant companions and suddenly my to-do list which included setting up funds for my daughter up to university levels suddenly became just a scrap note. Struggling to understand what and how I had started occupying a niche in the opposite extreme from the fiercely independent, highly analytical and logical fellow to becoming someone who pride meant little or nothing to as I struggled with the simplest of tasks like getting out of bed. It seemed as though there were myoclonus triggers hidden behind every simple chore

I can still recall how unreal it sounded (returning from my weekly visit to the chiropractor) as I boarded a crowded Bus 379 from Ilford to Dagenham, when the driver (bless her soul) turned around in her seat and announced “could somebody please get up and give this disabled man a seat.”….Oh yes, she was referring to me and even though I still did not see myself as being disabled, that was me and the picture people saw. It is kind of crazy when you have these flashbacks and suddenly huge waves of nostalgia tend to drown you. How did I get here? What happened to the detailed plan I had? But there I was, all alone, each day a constant battle raging within my soul as I strove to overcome the limitations of my physical strength. Mind over matter! Mind over matter! The mantra did not seem as easy as it was when I wrote it down or told someone else.

Fast forward to this day, I can attest how topsy-turvy this journey has been and I mark today as a notable one because it has always been about the choices God helped me make each day. Refusing to give into the waiting arms of hopelessness and depression, realising that my life meant more to some other person besides me, that even when the clouds were so dark that it could pass for midnight and the gales of the biting cold winter buffeted me so much, I just had to persevere some more even if it meant calling out to or accepting the help of a stranger. Today, I realise that as many strangers came up to me to thank me for inspiring them, they were infact the very ones who were a source of inspiration to me. Strategically placed by God for times when I wanted to just give up, today they are my family.

From those dark days, the light now shines and yes there are still dark days (obviously) but I look around and realise that the options I had back then are still the same two – quit and sink or struggle as hard as I could and stay afloat. We all go through life and what we eventually become is a reflection of the everyday choices you and I make. That the very bleak times we sometimes face can either be a garment that we get lost in or we can use them as the opportunity to train our eyes to see that tiny glimmer of light ahead. We could use those times to lose the individuality of our person or we could use them to further understand that to every limit and constraint, we still get to call the shot because we all were created for a purpose. We could use those times to understand that we were not created to walk alone as against using it as a benchmark for all the bitterness and pent-up resentment just looking for an outlet.

I woke up today, realising that when it is pouring outside – it presents an ample opportunity for me to just get out there and wash off the grime that has built up from listening to the wrong people. To wash off the grime that comes from basing my actions on thinking that my efforts will always be appreciated. To wash off the grime that comes from succumbing to the heat of the moment and letting scathing words do damage, if I choose to. To wash off the grime that comes from engaging in thankless tasks and expecting other people to be grateful for what I do. Today, as always, I choose not to stop because these very ones are there unwittingly to further propel me to heights yet unknown. The rain will always pour, what we see it as and what we do with it is best left to each person. Notwithstanding what we do with it, it will surely rain and as each peal of thunder reverberates through the heavens and the lightening slashes through the skies, it is up to us to choose on what side of the line we want to stand and live.

Remember that it is in the house of sorrow that much wisdom is learnt and it is in the times of adversity that you best count your friends. For on this journey called life, there will always be a meeting and a farewell and so make every opportunity an event that will never be forgotten.

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

Adios!

Keeping it real…..

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I hate travelling but again that is a necessary evil. A complete turn around from my pre-myoclonus era where travelling was so much fun and one of my hobbies. Anyway, life is not fair because life in itself has been tarnished and tainted and still is and so just being yourself is one of the most difficult challenges you can ever dare to undertake. I recall the tale of the tale of the simple lady who was invited for lunch at the Queen’s request on account of her widespread gestures of concern for everyone she ever came across, and when she was interviewed on what set of manners she intended to display during the courtesy lunch, her answer has always been one of my fundamental principles “I have only got one set of manners and that is who I am“…..impressively profound. In the course of my travels, I have come to acknowledge that life is much more than an endless pursuit of fame and wealth and recognition, a concept I wholeheartedly abhor but one that appeals to majority of individuals – ‘it is all about the green backs!’.

Being cast into the physically challenged category has been an eye opener in many regards and a completely new field of learning for me. I have come to appreciate that being able to do anything at all is something worth being proud of, so pause today, take stock of your abilities (regardless of how little they may seem) and say a word of thanks to Him that has blessed you. I recollect the many times I have been forced to take a large dose of patience pills just because insensitivity abounds and is largely becoming a second skin to many individuals, waiting on board many an aircraft whilst all passengers disembark just because I have special needs and being subjected to hurtful and derisive looks and remarks because we have largely refused to be human in our everyday living. And now, I know that wherever I meet any individual striving with some form of physical challenge, I choose to pause and salute their bravery because being yourself without any form of inhibitions is difficult enough without adding on some form of physical challenge.

Each new day is filled with its own share of troubles but remember that even when life throws the kitchen sink at you and knocks you out, wake up with the courage to still be yourself but duck next time where you can. “Sometimes it is just easier to tell a stranger than to tell the people you are close to. The freedom of speech is my liberation from solitude and if you should take that negatively or with annoyance then that’s on you to look the other way” – Nicole Hill. I have come to realize that so many of us are absolutely terrified of even attempting to discover who we really are and so my question is if you are scared to define or know who you are then what business do you have at attempting every other thing because life consists of not just knowing who you are but being bold enough to stay true to who you are. I may not have been born a quadriplegic but even if I were, that is not who I am. People ask me a lot if I was born this way, and amidst my answer lies this truth – I was born for a purpose and I dare anything to make me believe otherwise. Behind my smile, lies a whole lot of pain and an unappealing  bouquet of other discomforts but I choose to still be myself irrespective of how unfair life may seem presently.

Today marks a new beginning, and I walk in that knowledge knowing that even in chaos, God can work out order and harmony. Vacillating between many personas just goes to show how shallow your understanding of life is because as long as you fail to accept yourself for who you were made to be then yours will just be a charade for people with understanding to learn from. Each time the dime drops, I dare to bend over and pick it up even if it means exposing my backside for life to kick me over but guess what, you still have the dime in your hands so pick yourself up and do something with what you have got in your hand. Desire to dream but do something with what you have now and stay true to who you are. Many extraordinary individuals have opted to jettison their right to choose to be themselves for the sake of a life of pretense and despair in order to maintain a facade that hides sheer cowardice and stagnancy. Always realize that ‘No matter what you do in life, your words, your actions, your looks, your thoughts, you are never going to please everyone’ – Nishan P. so what is the point in embarking on a fruitless venture when you have a unique life ahead of you?

I am constantly stunned by the sheer audacity of individuals who are hell-bent on trying to be what the world wants them to be – by choice of career, relationship etc, many are actually skilled at blaming others for daring them to be themselves, hurling and trading insults every time you scratch their fake veneer. – because if only they could channel just a mite of that energy into discovering who they are then maybe, just maybe we will find ourselves being more loving, more accommodating and more sensitive to the lives all around us. For every time, we choose to make our lives more meaningful by doing those little ‘grand’ gestures to those around us, what a doorway of anticipation and self-development opens up for us. I will never know what it means to be perfect just yet but what I know is that I can be myself despite my aspiration for perfection someday and choose to make my own life an example for as many as I come across. That is my watchword even when the days seem so lonely and my journey unending, I will stay true to who I am.

I have to live with myself and so 
I want to be fit for myself to know.
I want to be able as days go by,
always to look myself straight in the eye;
I don’t want to stand with the setting sun 
and hate myself for the things I have done.
I don’t want to keep on a closet shelf 
a lot of secrets about myself 
and fool myself as I come and go 
into thinking no one else will ever know 
the kind of person I really am, 
I don’t want to dress up myself in sham.
I want to go out with my head erect 
I want to deserve all men’s respect;
but here in the struggle for fame and wealth 
I want to be able to like myself. 
I don’t want to look at myself and know that 
I am bluster and bluff and empty show.
I never can hide myself from me;
I see what others may never see;
I know what others may never know, 
I never can fool myself and so, 
whatever happens I want to be 
self-respecting and conscience free.

These beautiful words from Edgar Albert Guest, painstakingly learnt and memorized in High school are forever etched in my memory. Make today count because that is all we each have got, and be mindful that when you do, you can cherish them tomorrow.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!