I’m right here……

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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!

Be Strengthened…..

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A friend recently commented on how emotional she feels when she reads my posts and uncharacteristically requested that I write a happy post. Happiness and Sadness, Joy and sorrow, Riches or poverty, life and death….these are like the two sides of a coin. It is what makes the balance in life, knowing that no matter how thin a slice of bread is, there will always be two sides. “Even though I walk through the valley of the shadow of death” is a declaration based on divine revelation. Many would, if presented with the choice, probably opt not to go through that valley but you cannot be whimsical about the order of things. Like ill-mannered kids, picking only the good stuff from the bag when it gets to our turn to pick, you just cannot eat your cake and have it.

Now this is no dirge or eulogy, this is simply the musings of one who has, not by personal choice, being given the opportunity to reach out and touch lives. Sometimes my feelings want to conflict with purpose but not anymore, as long as this heart beats and there is breath in my lungs. I have not yet had the wondrous experience of walking the streets of gold in God’s celestial city but what I have is the opportunity of witnessing how trials bring out the best in us…..when we do not collapse and keel over in defeat. This is not a journal of every pain and sentiment I feel since I got diagnosed with dystonia in 2012, it is almost impossible to do that – how do you describe accurately the feeling of helplessness as you watch everything that you thought was you being stripped away? How do you chronicle the sheer frustration of trying to rebuild a life from the rubbles or pen down the emotions that well up in you as you are faced with medical bills without knowing how those bills will get paid? How do you narrate the disappointments that come from being told you cannot do this by your own body or illustrate in clear terms that the way and the will are two different opponents that must be conquered concurrently? The proverbial town crier might regale in the sonority of his voice in the stillness of the African dawn but when the market is at its busiest, nobody needs to tell him what an exercise in futility it would be to cry out a message.

Money answers everything but what good will all the wealth of the earth amount to when you are confronted with situations that transcend the realm of physical riches. This morning, I answered a knock at my front door and there stood a delivery lady (slightly dampened by the early morning shower) with a huge envelope. Tucked inside the envelope was one of the prettiest handmade card (the largest I have ever received or thought of making) with the words “Be Strengthened” boldly inscribed upon it. Beautifully crafted between the covers of the cards were signed handwritten notes from several of my College/University mates, twenty names in total, if precision means a thing to you as it does to me. Just a few minutes before that I had hung up the phone, thoroughly exasperated with a call agent because she explained that my phone line would only be restored if a specific amount (to the cent) was paid. Opening that card and reading every note contained in that card was quite emotional because these notes were from my mates, now scattered all around the globe-most of whom I haven’t seen in the last 17years. Hold on just a second, if you may please, almost simultaneously I got an email informing me that my PayPal account had just received some funds from these guys who I know have their personal issues to attend to.

I have always loved surprising people, I would rather surprise than be surprised because the logical and analytical part of me usually categorises surprises as something akin to reading a 300 paged book; but commencing at page 85 and ending at page 200, or a shirt half tucked in (in itself, a very glaring and incomplete design, entirely unsatisfactory and requiring me having to work my way; back to page 1 and forward to page 300). Oh yes, I do have mild OCD, so that really can be aggravating at times and so I tend to tell people right off the bat that I do not like surprises! Juxtaposing mild OCD and dystonia is a chemical equation of horrifying  proportions, it almost always have a disastrous result. However I have learned to change what I can and force myself to walk away from what I cannot change (the walking away part is really difficult but in order to prevent triggering an episode, I must walk away). When you find yourself in certain situations, you must quickly adapt or face the option of getting steamrolled, that is what I have learned on this journey with dystonia. There is so much I have had to learn in order to adapt – I have learned that faith is not just a word, it is a lifestyle. Love is not a word, it is an action. Sacrifice is not just an action, it is a painful decision expressed through actions that are quite unsavoury. And that giving, especially when you have to deprive yourself of something, has a longer lasting benefit than the extremely short high of receiving.

I have learned that worrying only extends inconvenience, all activity and no progress and so being told that I am a source of inspiration by men and women from different origins, categories and location is something that is extremely humbling. All I aim to do with each new day is to make someone else’s life and struggles just a little bit lighter even as I struggle with dystonia. Proclaiming that even though I cannot control the storm, I can smile even in the darkness because the strength to go through each day is not mine to dispense, it comes from an inexhaustible Source. All I try to do each day is choose to stick with the design that He has laid out for me, I choose to acknowledge that even when it seems like the ominous winds of life is about to snuff out my candle light, He is still there with me. I choose to acknowledge that even though I am about running out of resources, He has promised to supply my every need and so I have learned not to bother myself with how or when because He always shows up on time.

I am particularly grateful for the immense privileges of sharing paths with men and women of such incredible potential, purpose and focus. Grateful for the recent opportunity to be in such awesome support groups, because with every life I have been blessed to encounter, I have come away with truths that truly liberate – truths that are so deeply engrained in the entirety of my being that even when I am knocked down, I know that there is but one option available – ‘Pick yourself up and press on!’  For the bonds of friendships that have stayed true and the accepting hearts that still receive me till this day. The true description of fulfilment surpasses Rupees, Dirhams, Pound Sterlings, Dollars; it lies in the ability to allow yourself become a vessel through which someone is blessed because when the time comes for the curtain to drop, no stack of gold will prevent it from dropping. For those, who like me are struggling through their own storms, I encourage you to share these words with me, ‘Be Strengthened!’ No life yet created was ever created to be confined to the dumpsters of failures, despondency and hopelessness; your life is no different.

And so, as I reel with gratitude from the sacrifices of these few and others who have refused to just be bystanders, I just want to say that every penned or spoken word comes from deep within my heart. Knowing that we are all on a journey, and as you press on and still choose to give freely even if you are yet to get the spelling of dystonia or insomnia or myoclonus or Parkinson’s right, realise that “there is that scattereth, and yet increaseth; and there is that withholdeth more than is meet, but it tendeth to poverty.” – Proverbs 11:24. Within our hearts, desires lie; noble and pleasing but if we refuse to apply our hands, then we amount to nought but mischief makers, truncating the cycle of life. A soothing word, a little prayer, a look of genuine concern, a little token of compassion; these are what should define us as humans. And when a need is seen, do not first concern yourself with the genealogy but rather do something about it, because if you can see the need then you can do something about it even if reality kicks you in the teeth about your lack. Our lives are more than just a string of academic and professional titles, they are more than the string of mansions and stockpiled gems, they are easels that God uses in writing out a message of love, hope and perseverance to those around you.

Do not bask in the euphoria of your acclaimed fame and status because that in itself is no purpose, do not delight in the flurry of high-falutin verbage because that in itself is no purpose, do not pride yourself in your finely honed skill of bashing people with your beliefs because religion is just a word and not a purpose. Instead I choose to awaken myself each new day with a thankful heart for life and another opportunity to make the day count. Remember ‘Be strengthened’ might just be two words but the value of those two words are beyond the grasp of a life that is devoid of purpose.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Forging the link……

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Forging the link

Forging the link

I somewhat, till this day, see myself as a hands-on type of bloke although going by prevalent circumstances, that phrase by itself seems untenable. The truth is that while design and handcraft has always appealed to me, I have also allowed the process of building things from scratch influence my daily actions. Growing up, my parents insisted that in addition to the traditional education, you had to learn a skill and that period of internship usually occurred between the end of high school and the beginning of college. I still hear the words. “God might favour you and send you to a strange environment and while others are clinging fiercely to the stereotyped job ladder; many bruised, bloodied and with dreams dashed – you can take a step back when you don’t land that dream job and begin doing something on your own.” Maybe that, to a very large extent has influenced my mindset when it comes to education and career.

For me, when the break came and it was time to ‘go learn a craft’, I opted for carpentry and photography. Carpentry, because the artisan who roofed my father’s city house was a very smart fellow, skilled in his work and despite having a aspeech impediment, was not fazed at all having a conversation with me. My choice of craftsmanship was instantly made when I found out Zippamore was in his third year at college and was actually self-sponsored, and the acquisition of that snippet of information pretty much killed the idea that some jobs are meant for some class of people. Yes, my parents ensured that there were no airs about us, we might not have been wealthy but we were not poor either. Both my parents were educated and held down white collar jobs and so it would have been quite easy to develop an air of privilege based solely on that, but I can tell you that they neither allowed or tolerated any of that foolishness. We earned what we got and learned that unto each person, a purpose lies, a path beckons and a destination awaits. I still remember the very first day I walked into the carpenter’s workshop and found the other world where brawn was almost as equal as brains, where I learned the necessity of taking care of yourself after being bloodied once or twice. Oh, it was an eye opener indeed.

Unfortunately, there were not many blacksmiths that we knew of but besides carpentry, blacksmithing had always appealed to me because I really loved working with metal. Throw in the classic Robert Louis Stevenson ‘Treasure Island’ into the mix that was my life then, and a blade, a spool of cotton and a match book became constant companions of mine. Nearly four decades after, my fascination with metals and their hidden potential still remains and now I am also an avid watcher of History Channel’s ‘Forged by fire’. The importance of design was also conveyed to me then because without a design to keep you on track, many days will be spent wandering around in circles. So it is truly impressive seeing how an otherwise innocuous piece of junk metal, steel scrap can be forged into a beautiful tool…..but there is a process before that junk becomes that beauty. Three essential features of any process; the furnace, the hammer and the anvil. You do not go interning at an active blacksmith’s forge dressed in duck whites because you sure are not going to remain that way within the first hour. Copious amounts of perspiration, lots of heavy lifting and wielding are inevitable elements as you try to draw out that steel into lengths and patterns that meet the specification of your design.

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It is quite appropriate for life and its many events to be likened to a couple of days in the smithie’s. It is a process and if the steel could talk, I know for sure that sound mufflers (not just the ordinary ones) would be a critical tool because the screams of refusal from the steel would most definitely deafen you. But it doesn’t protest as it is thrust into the forge where it is left until it is almost white hot and only then can it be taken out and pounded by the hammer (pneumatic ones now) on the anvil till it has a rough semblance to the design that you had in mind. One lesson that I learned at an early age is that a chain is only as strong as its weakest link, it does not matter how long or heavy the chain is, its fate is down to that weakest link. At the shipyards, those huge anchors that keep the ship in place are usually at the end of a long chain and more often, a key part of a ship mate’s daily role is to inspect that anchor and chain to ensure that the each link on that massive chain is devoid of cracks, fracture or any form of impediment because when that order “heave to” is bellowed out and the anchor is released, just that one weak link could determine the safety of the vessel and the lives on board.

We are in the summer and each day is a struggle for me because I find myself totally exhausted with just the least amount of work done. Heat ironically is one of the triggers for the primary generalised dystonia and myoclonus that I have and so I would trade Alaska or Melbourne for a proposed vacation in a heartbeat. However I know that you cannot go through life having just one season and so I try to stay as hydrated as possible, take as many showers I can, forego the layered clothing and still cope with a body that is hurting in almost every joint at each day’s end. At the onset of this unique journey that I am presently on, I learned painfully that there are smarter ways of getting a task done than just applying sheer muscle. Despite the number of comments I receive about how ‘toned’ I still am, it amuses me because I really wish I could for just one day, instruct my brain to let my nerves and muscles be. The tremors are physically exerting and just having a severe dystonic bout lasting more than an hour is pretty scary to even imagine but life is a process.

These days, I have taken an entirely different approach, I choose to be as welcoming as I can be especially on social media because if only individuals could read on the face what each person is going through, I am optimistic that our world will change for the better. Being a member of so many support groups has and is still an honour to me, I have encountered so many people from all over the world with medical conditions like mine and just being a member of such groups continues to drive home each day, the fact that a chain is only as strong as its weakest link. Each day, somebody somewhere is having a really torrid time and being strong enough to utter these three words “I need help/prayers” is actually a testament to the intrinsic strength that defies human comprehension. Having a private conversation with someone who’s almost at their tether’s end; encouraging them on, reminding them of the fact that to every beginning, there is an inevitable end is so gratifying because it takes my mind off of my own struggles and lend an ear or a shoulder to someone else.

Entirely disregarding the picture that we may present, like two totally inebriated chaps exiting the pub in the wee hours of a new day, we prop each other up and stagger on, choosing to ignore the ignorant yet scathing looks and comments, we acknowledge that we are a chain and if one of us goes down, then we all go down. It does not matter if the ache in my neck is killing me, or I can barely get out of bed, when someone cries out for help, I choose to be there because as long as my vocal chords or fingers don’t tap out on me, there is something I can do because I am a link in that chain. As we constantly encounter life’s events, I choose to see this dystonia as the forge and regardless of how long I spend in it, I am confident that the finished product would be worth the pain and agony. The longer I spend in the forge, the better and stronger I will emerge and as the hammer and the anvil painfully stretch me out, I choose to remember that there is a design to my life. A design that was not drawn by me but one that in due time, show off every strength, facet, allure and usefulness that had hitherto been buried within.

God’s design is not flawed, that I tell myself each day and when the heat of the furnace threatens to becloud my senses or the pounding of the hammer seems like it is going to irreparably break me, I find comfort in these whispered words; “I am being strengthened and purified and designed. I cannot rely on my own strength because I truly do not know my own strength. I am but a link in this chain and I refuse to be the weakest link!’

Remember that if God gave His very best for us when we least deserved it, He has by design placed us as a link in a chain of lives and therefore nothing is good enough to hold us back from giving. We are all distinct and unique signature pieces of God’s superb craftsmanship. There is no solace in the darkness, no display of strength in pretention, no truth in a cunningly crafted veneer of falsehood because at the very end, you have nothing but a life that has been lived either by the choice of never to be the weakest link or a life that like the will o’ wisp will be forgotten once it has barely even begun. There is no misery in sincerity, no victory in glorying affliction, no weakness in vulnerability however at our life’s end, all but nought will be laid bare and even as the anchor buries itself in the sand, our chain of lives will either stand in testament to a purposeful life or shear apart in dismay.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Bucking the bull…..

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Stay on top!

“Bullfight critics row on row, crowd the vast arena full. But only one man’s there who knows. And he’s the man who fights the bull.” – Anon E. Moss

It is one of those days; those days where the storm clouds are all menacing and dark, when the sun has all but extinguished its rays and the air feels charged with static electricity. Those days when the waiting feels ominous and a sense of foreboding surrounds you. Those days when even an umbrella would probably want to take the day off, with defeat waiting to be embraced. It is the calm before the storm but this calm in itself has taken on another definition. This is one of those times when the very thought of just stepping outside the comfort of your home tilts between being adventurous and being insane; and for many, their lives are just an unending series of unexplainable catastrophic events, of harsh storms; winds howling and shrieking, trashing anything she can lay her fingers on. Yes, it is one of the those days.

I have bull-riding on my to-do list along with deep scuba diving, hand-gliding, car racing…..yes they are still on my list because before dystonia, there was the list. Now, I know that for professional bull riders in America, the rider must stay on top of the bucking and obviously enraged bull (hell bent on unseating you and possibly goring you to death), cling to the bull rope with one hand for eight seconds and not touch the bull with your free hand. Now that in itself is no mean feat because those 8 seconds can sometimes seem like an eternity when you are on the bull’s back, but in addition there are conditions to be met and these conditions are what the judges use to evaluate each performance. The bull rope is not something specially made, it is simply a flat braided fiber rope that is wrapped around the chest of the bull directly behind the front legs of the bull. To this fiber rope, the rider must hold on and stay seated for 8 seconds, if for obvious reasons the rider cannot remain seated on that bucking bull for the 8 seconds duration then the judges declare it ‘no score’. Not 7.5 seconds, 8 seconds! Despite it being called ‘ the most dangerous eight seconds in sports’ I still have it on my list because the list on its own is a statement of defiance and declaration that buck all you can, I am going to ride this storm till the end

However, like the wild enraged bull, life can present events that can and will buck you, attempt to unseat you and generally just be the worst thing that could ever happen to you. The question then is how do you manage the bucking bull that more often than not, you are compelled to ride at some point in your life. The difference between the success of your performance as a bull rider is to a great extent determined by the mindset with which you go into the pen. While many are still processing the fact that they are no more spectators, the pen is opened and the ride begins, and I can bet you that many never make it beyond the pen. The successful bull rider prepares himself for just that 8 seconds, knowing very well that it might be the beginning of greater things or the end of a season. Just 8 seconds, but with lots of preparation and a mindset that has so finely tuned itself to time that even if the horn signalling the completion of the ride fails to sound, the rider knows enough to make a dismount and give way to the next rider; either as an inspiration or as example of what not to do.

Being an avid watcher of bull riders, I have watched people tossed many feet into the air and come crashing down to the hard packed earth, I have seen some stomped on by the bull and even with all the distractions and the attempts of the rodeo clowns or bull fighters, occasionally the bull satisfies itself by doing a victory lap around the arena with the unfortunate rider impaled on its horns. A gory death indeed but we are not here to talk about death, gory or not, because death in itself is an inevitability for everyone. Alas, like every other thing; death marks the end of a season and the beginning of another. Back when I was younger, I always stated that it was better to leave this earth in a blaze – with so much fanfare that it would leave a searing impression on the minds of those that were opportuned to witness it. Now I know better, because it is not the moment that is seared in memories but how you lived till that moment of transition.

Dystonia in so many ways, is akin to riding a bull. It just doesn’t stop at dystonia or Parkinson’s Disease, it applies to every storm that you encounter in your life’s journey. And whilst you may find yourself prepared or unprepared, there is that window of opportunity to quickly come to terms with the situation you are in and grab a hold of that rope because that flat braided fiber rope is all you can cling to once the pen is opened. I have since come to terms with the fact that life does throw you curve balls at times but being able to respond and grasp the reality is what keeps you from being just another wounded rider. Am I going to allow myself be the jewel adorning the curved horn of an enraged bull as it trots around the arena or will I hold on until the 8 seconds is up, successfully dismount and give the next rider something to shoot for? Like we all know 8 seconds is not really that much of a time frame but while you are seated on top of that bull, it will seem like eternity. Regardless of how loud the applause is from the spectators, you have to embrace the fact that it is down to just two players – you and the bull.

As the critics holler their disdain for your ride or critic unfairly the style you use, remember that they are safely seated behind a huge barricade and rarely will they do more than just critic. However, amidst the spectators and other players, there are a few who are there to ensure you get done with the ride and dismount without severely injuring yourself. The rodeo clowns will do their bit when the time comes but you have to take charge and remember it’s just 8 seconds. For as long as life exists, we need to apply the right knowledge to situations as they come up. Bull riding is not the time to grab the bull by the horns, it is the time to hold onto that lifeline that you have so graciously been given. The fiber rope could be past experiences, it could be lessons learned, it could the kindly offered advise many years ago, it could be the out-stretched hand of a stranger but you have to recognise it for what it is or lose your seat even before the pen is opened.

And so remember this honest prayer as you press on

“Dear Lord, I have this feeling in my heart
when I slide down on my bull to do my part

It taught me a lot about life and
what it means to hold on tight

It showed me pain 
respect and all that is right

Lord, forgive me for taking my life into my own hands 
Cos being a bull rider has been my life’s plan

So please God, don’t let this bull take my life from me;
in happiness and humility, a winner I will ride to be, Amen!”

Remember that smouldering ashes can either mark the end of something that was once great or it can be the birthplace of the phoenix, the choice is yours to make.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

 

The miracle of brokenness……

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Broken but not alone!

I have been, in the course of my journey through life, asked so many times; “what is a miracle?”. And my answer since April 1992 has really not changed! A miracle is an encounter with The Sovereign God that marks a transformation to one’s entire being producing an altered and improved state thereafter. An encounter that cannot be literally expressed sufficiently enough because more often than not, there is such a new and heightened relationship with the source of the miracle that words cannot adequately capture. All miracles have an outward manifestation, be it healing or just simply waking up in a new day. However what i have also learned is that the most important miracle is not the healing of broken bones or the provision of a new job but it is the healing of a broken spirit. Since 2013, when I published my first post, it has been my prayer that every post transcend just mere reading of words but actually filters through to the spirit where ultimately transformation takes place. It is usually in the midst of brokenness that the significance of a miracle is most felt.

Has my life been devoid of miracles? Definitely not, birth in itself is a miracle and no matter how much you strive to attempt and define the source of the miracle, there is just One Source that evokes the miracles that matter. Do miracles always have that earth shattering result that has become so widely associated with being a Christian  as publicised in the media? Definitely not! My own experiences have shown me that the miracles that occur with no fanfare, no thunder rumbling or multiple lightening strikes on the same spot, are those that tend to affect you more significantly. It has almost become conventionally accepted that more potential is attributed to the miracles that come with fanfare and blowing of trumpets, which I think is somewhat like missing the mark. Nonetheless when you can percieve in the stillness of the moment within your spirit the beauty of the miracles that occur every day, then the profoundness of that miracle and its associated benefits are truly yours to enjoy.

In the course of the last two weeks, I have opened up my heart to more people especially those living with some neurological disorder as I am and those who, even though are not ailing, but by virtue of being caregivers to family and friends are also part of this group. Within this group, I have seen such resilience and defiance to being constrained and made a prisoner of Parkinson’s or Dystonia, that with every encounter I consider myself truly blessed. It is in the chats and conversations with these amazing group of people that I whole-heartedly attest that I am in an arena filled with champions. Champions defined not by the physical parameters of bulging biceps or stunning physiques but defined by their refusal to give in to these disorders and their astounding sincerity of actions that can only be fuelled by true love. In all honesty, this caption was born from the utterances of an incredibly amazing man whose craving for donuts and his humorous videos make him extra special. With his permission, I want to share his words;

If this makes any sense, there’s been an unimaginable benefit to having this disease. What are you talking about Uncle Donut? Well, I’m glad you asked, so hear it goes. If I didn’t have this disease, I would have never been exposed to a world where people who have such compassion and kindness, struggle with the simplest things. Being on the outside looking in, I would have never known that the person beside me in the store, may have just been through a Dystonia storm, or my neighbor down the street may have had Yopd (Young onset Parkinson’s Disease) and smiled while taking walks with his family. Physically I was strong and confident, but I have learned something about that. True strength is fighting everyday to keep going, even when your body says no. True strength is when you have a dystonic storm, but you get up to make cookies with your kiddos. There’s so many stories I could tell you, that I read about. I’m overwhelmed by a world of compassion where you are not judged, mocked, or belittled because of your disabilities. A world that welcomes you with open arms, and its ok to have bad days and not be criticized. I would have never experienced this, had it not been for PD. My eyes were truly opened, and I’m thankful to be part of this world. So please keep fighting, people don’t realize how beautiful and incredible you are. You may not feel this way some days, but I’m here to tell you, you are a bright light in a dark room. Much love guys.” – Keith McKoy

Reading this just allowed me re-appreciate the uniqueness of our individuality, expressed through the choices we make everyday. Even when we are broken, there is a miracle there if you can only just change your perspective and focus on the world around you. It is a miracle that defies the weakness, fragility and limitations of our human body. It is a miracle that forges a more resilient spirit, acknowledges that we were not created to be alone and taps into a Core that we never realised existed. It is a miracle that produces the strength to love someone else regardless of location, language, skin texture, size etc. It is in this brokenness that we can truly love in deed and not just words, and that is itself is a miracle. As long as we stand side by side, through the billowing and raging of the storms, through the darkness that seems unending, though the unpredictable and severe dystonic episodes, there is a miracle occurring through it all. Today, once again, I choose to give and when I have nothing more to give, I will stand/sit in silence with you because every life is special and nobody deserves to be alone in the storms of life.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

 

When the words dry up….

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https://redzhis.files.wordpress.com/2017/06/When words dry up

A Dry Fountain

In 1998, I was blessed to attend a global Christian conference targeted at reaching Christian students in colleges and other tertiary schools with the primary aim of showing us the need for evangelism (if memory serves me right). It was such a unique event with over 38,000 students representing schools from all parts of West Africa gathering in one location. One of the unique experiences was having to interact with other college students, learn the realities that were peculiar to each region and ascertain what the tastes and cultural values of the different ethnic groups were. Above all, it was such an overwhelming experience to realise that regardless of how fluent the spoken English was or not, there was a common denominator; we were all Christians in tertiary universities united by each person’s unwavering commitment and allegiance to a loving Sovereign God – striving to live a lifestyle as exemplified by Jesus while He walked the earth. Speakers from all over the world graced the pulpit, and when we broke up into smaller groups for further deliberations, it became more profound because then more of us identified our purpose and received the needed empowering beginning with knowledge. It was actually both a spiritual experience and another opportunity to acquire knowledge.

One of the lessons I took away with me was not just the opportunity to meet new people but the fact that there would come situations where you just had to stand all by yourself. And it was not just standing by yourself, it was standing with an unflinching belief in what you believed in. Knowing that come hell or high water, you had better be truly convinced in what your beliefs were or the inevitable result was to be smashed against the rocks of uncertainty, doubt and regret. As the years passed by, more than one of these situations arose and as the pressures (unique to such situations) piled on, whatever you had painstakingly stored within yourself was forced to the fore. I learned that when push comes to shove you had better have something inside of you or you would go sick with dry retching as you painfully threw up nothing because……….there was nothing inside of you. And so it was not just a new lesson, I had already been taught that by my father, it was the chance to apply those basic tenets and whether I was all by myself or not; reveal without a hint of pretention, the real me.

One of the signature cuffs that myoclonus keeps on forcing on me is the inability to really speak for extended periods of time because as I speak, the words are all there but the increasingly dryness of my mouth gradually deteriorates into the seemingly incoherent mumbling of one totally inebriated. And as days come and go, I have forged new methods of circumventing this experience. In addition to always lugging around a bottle of water at all times, I have started carrying around mints, candies, anything that combats the dryness (I have never been a sweet tooth) and so initially while it seemed childish, in comparison to the increasing puzzlement on the face across me when I am talking, there was really nothing to it. I had to choose between the ruffling of mints in my pouch/pocket or the deterioration of my speech which usually begins with my mouth drying up till I am barely able to string a complete sentence together.

In the last three weeks, I have become friends with so many remarkable people; ranging from those who are still grappling with the recently received diagnosis of Parkinson’s Disease (PD) or Dystonia to those who have courageously stepped out from the walls that they have built several years ago in a bid to focus their all into the daily battle of living with PD or dystonia. I am, still again, reminded of the resilience of the human spirit that refuses to be broken when you acknowledge that your spirit’s resilience can only be activated by choice. Choosing is easy when you are faced with just two options; when you understand the significance of each option. When you realise that the strength and resilience of our spirits is not something that is passed from parent to child, it is something that comes with acknowledging that we’re truly nothing when we are unplugged from our source. For it is our Creator, the Sovereign God that strengthens us when we embrace the fragility of our weakness and our vulnerability as humans.

One of the beautiful things about science is that it does not explain everything and as long as you continue to butt your head with that, wrongly believing that science has all the answers then the beat down is just going to become more frequent. Greatness is both born and made, and I dare say that greatness made is of more value to you than when it is handed down to you on a jewelled platter. Struggling to your feet after a beat down requires all your energies and hurling all kinds of expletives at dystonia would just be an exercise in futility, it does not care about you feel. However, most times, it is not the yell that has more weight or achieves more but the barely heard words spoken on the inside (encouraging yourself to get up) because your mouth is so dried up that salivating suddenly seems like a mirage in the desert. We may all look alike in some way but what truly differentiates us is the response or reaction after a beat down. An experience is not the event, it is the way we respond or react to the event – good and bad experiences are just tags, what we take away from the event is what tags it as a good or bad experience.

Now it has almost come full circle because life has been more than just a quiet and calm sea, definitely not, instead I have been besieged on all sides by what I would never have chosen in my wildest dreams even if it was the only option left. Living with myoclonus has been one of the roughest phases I have beeen through but what makes it so different, apart from it being rare and ‘incurable’, is the unpredictability of its expression and its triggers. And yes, individuals may infer that they are there for you but when dystonia is giving me such a beat down, I can but appreciate the candour of this truth – few will be there to help me to my feet based on the compassion that makes us human beings combined with the fact that everyone has issues. However, it is almost sheer folly wanting more from them during the beat down, there is just one subject of the beat down and that subject is me. There will always be help, probably around the corner, but I have learned that harbouring resentment only makes the entire experience worse and elevates the hurt from just being physical to more of a searing hurt on my insides.

Learning to appreciate the little everyday victories in our yet unending fight with these nasty diseases/disorders is something that must be sought for, nurtured and applied each day. Whether we choose to wait for the drumroll or not, a victory is a victory and the magnitude of the victory is just another human parameter, just as flawed as everything else we make. Words will always count for something; fragrance or noxious, soothing or destructive, the nature is our choice to make but there will come times when those words can barely be uttered and our actions in the silence of those times will inadvertently determine whether we believe that we are created for a purpose or we are just existing for ourselves. Today, help will come, and most often from the least probable source but till the help comes, let us never for a moment entertain the doubts that we are worthless because we are unable to convey how we feel to the person standing next to you. And even when we are sorely reminded by their presence by their elbows digging into you, intentionally or not, let us not base all our hope on things that are fleeting in nature.

May our words be true not superfluous or ensconced in falsehood, and when we can barely utter words, let us remember that our actions tell a tale of a life living with purpose or not. I strive instead to show that I can be a beacon of hope, bearer of light and a vessel of right living and that despite what the circumstances say today, I refuse to be defined by them because I know better days await ahead.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Behind the walls….

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https://redzhis.files.wordpress.com/2017/06/Behind the wall

Behind the wall

Photography is a hobby of mine, getting more difficult with this journey I am on, but I learned as a child that a picture is worth a thousand words. Words come easy to some, not on account of the possession of a mouth, lips, vocal cords or hands, I opine that they come easy based on who you are on the inside. Words have always been an essential part of humanity or better put, communication has always been an esssential part of humanity. In war or peace, communication always played a pivotal role. I look around and realise that without words and communication, not much would be the way they are today.  It is therefore not very difficult to surmise that we all use words allbeit in different forms. How we use them is an issue on its own, but the way we use them guarantees either a reaction or a response.

A couple of nights ago, I was telling my daughter about the biblical story of Joshua and the battle of Jericho, and when I told her that the walls were so enormous and fortified that chariots could race above those walls. Now we are talking about at least two war horses (noted for their temperament, constitution and loyalty), the chariot (usually constructed from wood with a decoration of some metal filigree) and one adult. Now that there in itself is some weight, by the time you factor in the effects of the force transmitted into the walls by the running hooves, the rotating wheels etc, it is best imagined that those walls were not a foray into construction by some individual who felt bored. They were built to withstand, provide refuge for the inhabitants of the city especially in times of war and also exude a sense of peace as you gained entrance to the city.

This was not what I intended to talk about however, in the light of recent happenings, this has been birthed. Walls signify fortification and with the evolution of dynasties, we still require walls even as individuals for our residences; be they grand or tiny. Breach the walls of someone else, without invitation, and you are bound to suffer the consequences of whatever you encounter behind those wall. I recall my first experience in erecting walls; the walls for the family home built by my parents, I remember the foreman spitting out expletives when the wrong mixture of cement, sand, gravel and water was used. For the ‘security’ walls, the concrete mix differed from what was used for other parts of the building and despite the grumblings of the artisans and workers, they just had to get it right. In order to gain access to the house, you had to first get past the wall and it was so much easier when you were invited in (we have always had guard dogs, as children and when we were still in the nest, set loose at night). Behind those towering walls, there were secrets that could only be guessed by those walking on the outside and therefore in times of conflict, reconnaissance was vital.

As earlier mentioned, photography is a hobby and with time, I realised that I preferred staying behind the camera rather than being the subject of a photo shoot and till this day, my best pictures of people are those taken when they were unaware because it tells you a lot. And so I am of that quaint school of people that believe that man has yet again tinkered with the status quo because there are so many ways of editing pictures that they just come across as unreal and therefore the thousand words are inadvertently influenced to create a story that appeals to the subject. I can remember visiting a studio, just to get some passport photographs and when the passport pictures were given to me, I almost dropped them in shock because he had gone the extra mile of editing away my freckles! This was at least 7 years ago, so the leaps and bounds photo editing has come through is not something I want to even deliberate upon.

As an individual, I believe that words and instrumental music (classical, opera etc) are true expressions of the writer’s hearts and if you attempt to tinker with that then your objective had best be communicated as well. If the objectives are not properly or clearly expressed, not only is that an attempt to mislead but you taint the interpretation. Admittedly, it took quite a prodding before I joined Facebook and the like, however I try to stay true and for years, my Facebook account lacked any pictures of me. The other day, with my daughter going behind the camera, I made a short video of what an episode of dystonia looked like and I posted it on my facebook wall, I am still reeling from the flood of goodwill messages that are still coming through. The most popular comment from people has been been, “I’m so sorry, I never knew this what you were passing through”. I am still stuttering from the number of calls from people who called me after seeing the video. In all honesty, that will go down as one of my first attempts at emerging from behind my wall.

By virtue of the compelling and overwhelming need to conform, many of us have successfully, for years, hidden behind our walls; tucked away securely in our comfort zone reluctant to reveal the truth because the truth is not something that is a crowd pleaser. On the contrary, it actually reveals more that you had wanted to and the interpretation is best left to the recipient. Nobody wants to appear weak and vulnerable because we have become brain washed with notions that vulnerability is a sign of weakness and weakness is something that should be oft despised. What makes us human does not lie in what we have acquired over the years, it is in the everyday gestures and expressions of our hearts carried through on platters of kindness, compassion, hope , trust, faith and love. No matter how much concrete we pour into creating our impenetrable comfort zone, whatever you portray when you want to emerge, is a far cry from who you truly are and that in itself is a deception of gargantuan proportions. In order to deceive others, you first of all have to deceive yourself and rationalising it logically, the person bound to be hurt the most is YOU!

Discernment is a gift that many of us have been blessed with, but few have bothered building it up and developing it with the right nutrients just like we do with our bodies. We have chosen to ignore the needs around us as we journey through, confident in our own self told fact; “it is not my storm” and “if I were in your shoes, this is what I would done”. Can I kindly hush you before you make a bigger mess of yourselves, YOU CAN NEVER KNOW HOW YOU WOULD RESPOND OR REACT IN THAT SITUATION UNTIL YOU HAVE GONE THROUGH SOMETHING SIMILAR. As we saunter down life’s streets, we encounter walls of all kinds – some standing tall, some crumbling and in dire need of attention and some completely broken down. What do we do when we are opportuned to see beyond those walls? What do we do when we come across a broken down wall? Do we join in looting the spoils or we help in rebuilding? Self-control is a trait (scripturally likened to a wall) that we all must have as individuals but when our walls become less of a necessity for us and more of a ‘keeping with the flow’, then it is time to stop and re-evaluate.

Some of us have been so sucker punched by experiences that we lay in the dirt, completely spent, greedily grabbing air into our lungs and watch in dismay as our highly decorated walls fall to bits. We lack the strength to even pull ourselves up but there is a choice to be made here, “get back on your feet, soldier!” or curl up in the dirt and wait for the final curtain drop. I might still be reeling from the annoying attempts of dystonia as it tries in vain to re-define me, but I will rise and with tottering steps, get out from behind my self-built wall because just down the road, there is a city whose walls are fallen in battle and its citizens paralysed by the sheer enormousity of being prisoners of war. There is no joy in being a prisoner and while we are constrained by events that we didn’t choose, we can redefine our priorities and make our lives count for something. This might be that chance to reach in and pull out that gift that you have so selfishly used on yourself and for yourself alone, and instead choose to use it in assisting someone else. I can whole-heartedly assure you that your fears of it running out will not materialise.

True, money answers all things but does it provide all things? And if the answer is a quiet yes muttered beneath our breath then it would make so much sense to apply it to providing channels for those things that cannot be bought. There will never be a perfect life, no dwelling on the mountain top forever and whilst you are basking in the sun, and getting a tan or luxuriating in the freshness of the cool air from the ocean side, remember that the sun will set soon and when the darkness sets in, pray that you do not stumble. Storms will always come, we can do nothing about the size or strength of the storm but the factors that you can influence, please do not hold back. For today, you are able to shelter a wandering stranger as his night engulfs him, tomorrow is a mystery that we can prepare for today by just being human.

Remember “We are not human beings having a spiritual experience. We are spiritual beings having a human experience” – Pierre Teilhard de Chardin. My thanks go out to those who in the last few days (and those to come) have with no hesitation accepted me as their friend and brother, especially those who like me have hidden behind the walls of dystonia and Parkinson’s syndrome, know this; Champions can be born great or they can learn greatness. Each of you are champions because as long as you arise each day not knowing whether it is going to be a good day or not, you are making the choice to make your life count for something. No matter how heavy or long a rainstorm lasts, it can never wash off the smile on your face.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!