In the stillness…

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Be Still

There will always be that time when it seems like I can barely escape the shadows. When all else quietens, and the sound of my beating heart reverberates through the silence. It is in those times that I reminisce on the topsy turvy of the journey I call my life’s tale and find true beauty in the ashes.

From the plucky little chap in his bright shorts and shirt, tugging on the leash of my toy doggie; Snoopy. The world in all of its enormity, a conquest to be had with nothing looking remotely like an obstacle. I remember how much of a daredevil I was, mischief twinkling in my eyes with hands and feet that couldn’t stay still for long. Searching for and accepting the craziest dares, it looked like I was invisible but life is a mystery box and when jack pops up – it is either of two options, a heart attack or a rush of adrenaline. Regardless of how neatly life appeared, a neatly stacked line of dominoes, nothing really prepares you for the uncertainties.

Even through high school, when friends were made anew with a promise of always being there, life was like a walk in the amusement park with a pocketful of quarters. Never hungry or butt naked, every phase was a trail to attaining a milestone and life was truly beautiful. Sneaking through the pantry with mother’s catering books, whipping out pastries and trying out recipes, nothing could possibly have been better. However there’s always going to be that turn in the road, when visibility is so limited and despite how hard one tries, you cannot see beyond the turn. Stopping, getting down and re-evaluating is not always feasible especially when the thrill of the ride is euphoric.

I remember the concussion I suffered when in my haste (why I always ran is still unfathomable) I ran through the discus sector and got hit by the discus. I remember having my fair share of being picked on and childhood fights. I remember walking home in tattered clothes because my ‘experiment’ blew up in my face and gave me 2nd degree burns (earning the nickname Acidman). I remember being so sick only to find out I had weird allergies. I remember witnessing a nurturing home and loving relationship being torn apart by folly and the influence of wrong company. I remember my first automobile accident, tumbling over and over. I remember being shot at. I remember waking up one night unable to breathe, the race to the ER. I remember journeys to strange places and encounters best left unshared. …….but I survived because of God’s mercy and love.

I recall the university years, being the enigma to many even as I sought to stay true to myself. Plunging headfirst into as many events as I could, getting the down side of misplaced priorities when I chose to continue my internship despite the fact that lectures had commenced. Grateful for the fact that I could be the ear to those in need, a shoulder to cry on for the broken and the elixir for the depressed. Life was beautiful indeed and with the mixture of highs and low, exhilarating describes it best. Graduating from university and going off to the unknown, I knew I would survive because that was just who I was. A blend of healthy spiritual fundamentals and a healthy body, I blossomed within an awesome relationship with God. I was prepared for anything!

Commencing my work career, I thought I had it all planned out and even when I dropped the white collar job for a stint in the military, the confusions of many was the least of my worries. Parenthood was another season and as always I had it all planned out in my head. Setting up a trust for tuition, acquiring what I wanted, it was all going well but it’s in our nature to plan however it is God who decides. Knowing I had that relationship served as a buffer when things went south occasionally, however I had been raised to believe in myself and so I always did. Just when it seemed like I had it all together, life happened. Series of events that I never imagined started unfolding bringing to fore the idiom, ‘when it rains, it pours!’

The culmination of a life in tatters was in December 2011, all around me that carefully built life in heaps of wreckage and just like a skilled burglar, night had suddenly and swiftly crept up on me. Struggling with those fiercely entwining tendrils of darkness, it was a struggle to make head of it all. And each time, I chose to head for the light, the darkness just got longer. This was no medical condition, this was my life now, almost completely subjected to the dictates of the rare, incurable neurological condition termed dystonia. Then it hit me right in the gut; there were no voices lifted in celebration to be heard, no hand to lift me up, no strength to light a match. This was now my life, like a pariah condemned to dwell outside the city walls, isolation was a welcome thing. However, we are a result of our choices and so I learned to bargain with an adroitness I never knew existed. Learned to lace my own shoes with brow furrowed in pain, every little gesture a battle of wits, things previously taken for granted were now things I had to relearn. Circumventing steps to conserve my little energy, being the object of compassion either as I was wheeled in a chair or as I struggled to make my way home leaning heavily on my cane.

In the stillness, my eyes slowly adapted to the darkness and my ears became attuned to the groans of those fallen around me. This was my life but still there was a purpose to it and regardless of the absence of ‘friends’ or ‘family’, one truth stood out; this was my life and so every choice I made had to count. When the cold hands of depression sought to console me, I chose to shrug them off and in the stillness, I found hope that I hitherto believed was lost. I found friends who became brothers and I realized that purpose is not shaped by your experiences rather it is given more clarity during those experiences. Today, I am not just a survivor but I am a victor because even though I have been scorched by the flames, I am now stronger just by the process of walking through the raging flames.

It is in the stillness that you learn some of the hardest lessons, letting go of pride and ambition whilst embracing compassion and aspiration. It is in the stillness that I have learned that my life is not dictated by the size of material wealth but by the riches of intangible values. It is in the stillness, empathy assumes meaning and pain can be shared. I have known abundance and lack, however I have also learned that contentment is wanting what you have, kindness is giving when all else is screaming, ‘save for the rainy day’. It is in the stillness that I have learned that it is better standing in the rain with a friend or someone in need than struggling not to get wet beneath a poncho. In the stillness, I have learned what true strength is, what trusting God means and what living actually means.

Sticks, stones and words will hurt but the resilience of the human spirit is so much more greater. That is what will define you when all else has gone silent. That is what nothing can take away from you except you choose to let it go. It is all about the stillness….

עד ניפגש שוב, תן אהבה שלו למלא ולשמור אותך!

Adios!

I’m right here……

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invisible

Posted a video some weeks back, something completely out of character for me and I’m still dealing with the reactions. However, I’ve never heard this statement before and I told him same; “Oh yeah! I saw the video but I thought you were acting a drama!”. No, I’m not kidding you at all. In continuation, “it was when I saw the comments from other people that I went back and saw I had assumed wrongly!”. Honestly, that brings mixed feelings, do you laugh it off or take the time to explain? But the question is, when taking a walk on the beach, do you stop and ensure all your footprints are covered. My hilarious buddy, Uncle Donut inspired this post and maybe with his permission, I’ll include to his video. A truly amazing guy whose resilience also inspires me.

What’s going wrong with the world and its occupants? I’m right here! I can see you and I know you can see me, I can hear you and I know you know that too, I can also talk and just in case you’re assuming I can’t talk, we just exchanged pleasantries!!! I’ve had people say hi, return my smile and then stop Joiv and ask “why does he use a cane? Is he okay?” Hello! I’m 5’11”, 200lbs, a redhead with freckles and people say I dress like a Brit (a particular category I’d believe cos I’ve seen my fair share of Brits with saggy pants, comfy with puke all over his shirt and totally inebriated), speak fast and have a carribean twang in my talking. In summary, even if I try to hide, I’m pretty easy to find. So “hey! once again, I’m not Harry Potter, I don’t have a cloak of invisibility (and if it does exist, I probably might have some difficulty standing and trying to conceal myself while standing.)

The other day, I came across an elderly couple on my way to the pharmacy to pick up my medication and after saying hi to them, the lady asked the pharmacist, “why are you asking him if he’s taken these pills before?” Ummm! I’m right here” and if you think it might be rude asking me then just begin by asking me if I don’t mind you asking me a question. I don’t mind and I’d really prefer to do a 360° with the shopping cart in the mall or dance to the music coming through the mall speakers if I could so that I can also prove to myself that I’m real.

I really think it’s time to start testing myself in weird ways because why bother to send out or accept a friend request on social media if you don’t plan on having a conversation. Why bother spending seconds (incase you’re a fast reader with a 180 IQ) reading a post or an article and just leave without reacting or leaving a comment. I mean if there’s some super spy agency that requires those ‘skills and has very good health insurance coverage, please sign me up as fast as you can, I really would appreciate some financial rewards for being nonchalant.

Okay, let’s back up a little here – I just added “I want to be invisible and get paid for it” at the top of my list. I sure would like to eat a banana and wrap it back up with duct tape or prise open that can of pistachios and take a handful, oh I do love yogurts but since they’re not sealable, I’ll probably just put it back empty on the shelf…..walk right out the mall and drive home. I actually feel today’s grocery shopping should be on the house because if you’re polite enough not to see me then I guess I should return the complement. Why embark on a fact finding mission of looking for your car keys while you are driving? There really must be something I’m missing here.

Anyway, I think it’s time to actually become invisible and that also applies to you dystonia, “go stand in the naughty corner!” Are we really being polite or just becoming more nonchalant because I would really love to sit naked on the beaches of Tahiti, sipping on some carribean juice rather than being ‘not seen. If the price is right, I would love to supervise the pilot in the cockpit even though I know nothing about flying. Or better still, walk up to that horse and ask him to scratch my ears. What? We’ve both got ears, why should he always be the one who gets the scratching done? Lord! All the things I would qualify for by being just invisible however I’m not and so please don’t be offended if I’m unable to not be invisible.

Ever been to the dealership to have your oil changed and 30 minutes after you’ve handed over the keys, someone walks up to you and asks you what you are doing there? Oh no, there’s no reason why I should get offended, ‘I couldn’t find an apartment to live in so I’m currently residing in the dealership’ and while you are at it, ‘could you please get me a cup of coffee and some cheese croissants?’ It’s just outright amusing when the ostrich’s idea of hiding is to bury its head in the sand, the huge derriere will just blend in. So please when next you see me, remember that I’m perfectly capable of seeing, hearing and talking.

Nobody aspires to be a nonetity, that is not a career choice in any part of the world except the mall on Mars has job openings. I recall my first and only psych evaluation after being diagnosed, he sent me a copy of his report and I wrote him a letter attaching his report and politely explained to him that he would probably fare better as a zoo guide because the animals don’t talk but I can and yet nothing in his report related to all that I said to him. I guess it was the luck of the Irish that got to him, so an amicable parting and some extra quid in my pocket was really a good deal.

Now let me go get some duct tape for my eyelids tonight because desperate times call for desperate measures!

ללא שם: בואו לא נהיה עייף עדיין, עדיין יש קצת אושר שם בחוץ!

Adios!

Gone with the wind???….

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

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

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

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

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

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

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

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

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

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!