Tag Archives: Dystonia

Taking Inventory…

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Sunday (10/15/2017) marks a significant milestone in my writing career and despite the origins not being specifically auspicious (as viewed by some), like everything else that exists, there was a beginning and it is still going strong. It is highly uncharacteristic in today’s world to associate success without financial remuneration however I have since learned that our views and opinions are a reflection of the experiences that we have had. I take pride in the fact that I have worked in four different continents and with this diverse work experience comes the inevitability of having to improve my interpersonal communication skills, because in order to build a successful team or join one, communication is critical. Notwithstanding my ‘diverse’ work experience, there are actually a few things that really prepare you for the inevitable changes that come along with the dynamism of life. Life in itself is a journey and so many times, we start off with a destination in mind and a pre-planned travel route but the irony (often unanticipated) is that some of us literally have to learn to wing it each day due to the unexpected changes that we encounter.

I started writing as an outlet after being diagnosed with Dystonia, and most asssuredly I can say that it not only helped me deal with all the major changes that were taking place at the same time in my life but it also created an arena where I had to learn that vulnerability is not a weakness. Speaking from the standpoint of one who has had his own stint with the military and law enforcement agencies, being vulnerable was and is still erroneously regarded as being weak. Being a combination of choleric and melancholic, temperament wise, was not that much of a help during those initial dark days, because when one is used to lining up the stars before proceeding on any task, having to deal with the reality that the galaxy is not arranged by my own standards becomes a huge deal. Acknowledging that we may have the best of plans, we commence our foray into the battlefield of life but ultimately our paths are defined by the choices we make when we get knocked down to the ground and there is literally no breath or strength left to stand again. And so when in the course of discussions, I discern that the ignorance being flaunted is not an intentional act but rather one that is borne from the lack of experiences, it is usually not that big a deal to concede and move on.

I have since learned that empathy and sympathy are just words to many of us who have not experienced any storm however the ability to gain wisdom and apply it is a personal choice. Sometimes, wisdom is avoiding making mistakes (not very easy because we are prone to making mistakes as humans) and learning from the experiences of others. Today in church, I was reminded that empathy and sympathy are simply channels for conveying information and so being able to sympathize and empathize is not really worthy of a celebration. These are abilities that come along with being human, choosing to utilize these abilities or put them in cryogenic chambers is one that every person has to make. And so as we trudge along on our personal paths, we are better companions when we can empathize but the truth is that there is a world of difference between empathizing or sympathizing and being compassionate. The former informs you and creates room to be humane while the latter does more than just informing, compassion spurs and motivates you to identify a need and do something about it because remember words are just words until they are translated into action. And so with each new day that I am blessed with, I choose to be compassionate because even if you have the financial muscle to own your own private island, you cannot be oblivious that there is so much hurt and pain around us.

As I continue on this journey of mine, I am continuously learning new things about the limitations of my body, the strength of my spirit and the inexorable dependence on God that has significantly influenced every step of this journey. It is therefore no coincidence that my name means “God is leading me!” and so it should be a no brainer that I yield the wheel to Him. However the glaring truth was that just when I thought that I was doing that, my life after the diagnosis compelled a better understanding of what it really means to trust Him for everything. You really have limited options when you have to combat with chronic pain or deal with the mutiny and uncooperative attitude of your physical anatomy on a daily basis. Need I mention the fluidity of my body clock, choosing to reset itself when it wants to even when my bones, joints and muscles are crying out from sheer exhaustion. There are experiences that require ultimate commitment and completely going off radar just to attempt to put them into words and even at best, the words are unable to really convey what you feel. Despite the obvious shortcomings, I always remind myself that ‘in the effort lies victory’. It really is not all about me anymore, there is so much going on within and around me to make it a completely futile exercise to want to make it all about me. Focusing on myself just makes the journey much more difficult that it already is, and it is just sheer folly attempting to increase the current level of difficulty.

So as I celebrate yet another milestone on this unique journey of mine, I celebrate the many lives that I have been blessed to have met. The countlesss stories of ordinary individuals who have been thoroughly bested by life but still have the fortitude to not give up. The periods of silence shared with friends going through horrendous storms, the pleasure of having warm hearts open up to me, scarred and twisted hands stretched out in friendship and just having this unique opportunity to identify with champions from all over the world. That is what I celebrate and although my destination is unchanged, I still have to cope with the ever changing routes with each new day. To all who have refused to give up, all who constantly defy the odds and even the memory of those who have fought the good fight of faith and are currently in a place where pain, sorrow and illness are non-existent, this is appreciating you for accommodating me and my excesses – I am still a Work-In-Progress.

‘Occupy yourself in beholding and bewailing your own imperfections rather than contemplating the imperfections of others’ – Ignatius of Loyola is a quote that serves as a daily reminder that there is still more ahead of me and so it would be reckless to make a career out of focusing on the imperfections of others when I am far from being near perfect.

עד ניפגש שוב, תן את היופי של ארשת פניו לזרוח עלינו!

Adios!

Clearing Debris III……

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Clearing Out

Still on this subject? I am tempted to ask myself that however I have since learned that there is a difference between staring at the same point from the same location and looking at an object from different perspectives – the former stultifies while the latter informs and empowers. I have to admit that it has been a horrendous weekend for me but again in the light of the options available to me, I choose to still be thankful because what I just might consider as ‘granted’ can and is usually someone else’s luxury. I walked into my daughter’s room this morning after the usual protocols had been observed and once again, it looked like The Flash had just zapped through her room. And oh boy, did I learn in unforgettable ways that ‘cleanliness is next to Godliness’ As a growing child. However I now know that the context in which cleanliness is used is in reference to holiness (that is another subject to share on) and so the many unforgettable ways did not really help me until I understood what it meant.

Me : “Why are your clothes strewn across your bed?” Her response was sensible but more of an explanation for not doing what is right, “Oh, these are for washing cos I have worn them before and the others are for ironing…..” well to just sum up the entire conversation, we agreed that anything not properly stored in its place was destined for someone who needed it more because families had lost their all. Well, this post is not from some far off city where the devastation was seen on TV, we witnessed it and we do know families and friends who had to leave everything behind (and lost almost everything) so that they could be evacuated by The National Guard using an RFB. Now, the road to recovery from the Hurricane is still ongoing and may very well be for a long time however with each drive through the city, the debris on the front lawn of homes are still reminders of how we were saved from the storm. Yes, I said saved. The default instinct of natural man is to ‘store for the rainy day!’, but when the rainy day is here, we still find an utterly ridiculous reason to still keep storing and before we know it, we create breeding grounds for pests and put ourselves in harm’s way.

Clearing Debris III

For the dump

It just occurred to me a while ago that we each have varying amounts of debris in our lives and it takes the occurrence of a storm for us to seriously and quickly determine what counts and what can be recovered later. All this going through my mind as I wondered how on earth I still give in to the temptation of sleeping or trying to sleep by laying on my stomach; that was my default sleeping position pre-exacerbation of dystonia and its dx. I can be very graphic at times but when the pain on your lower back feels like your lower spine is in a huge torque wrench, and the lightest of movements feels like that torque wrench has just been given another turn, then attempting to chronicle these frequent episodes is quickly forgotten. In high school, I encountered the term ‘opportunity cost’ and it just made a whole world of things clearer than before. I would gladly defer the option of having a body that sometimes just ‘goes rogue’ for even a popsicle on a winter morning. It is said that some things are better experienced than told, for this case I would definitely call for a timeout on the grounds that this should not even be on anyone’s to-do list!

As I pass through the lives of those that I have been and am still being blessed with, I still find it just a mite disconcerting that many of us have blissfully chosen to ignore the fact that for there to be a beginning, there has to be an end. And most times, endings are not always pleasant because we want to keep hold of what we should give up. Now this is one truth that stares us right in the face but we so often choose to ignore it; until the debris that has built up over the years from bad habits, wrong choices, stubbornness, recalcitrance (the list is endless)is cleared out, there can be no fresh start. I remember what it was, what is and I know what it will be because thankfully the storms of dystonia has compelled me to clear the debris. It is in the middle of the rainstorm when you are drenched and the chattering of your teeth is the the only familiar noise above the storm, that you give no thought to the cost of the poncho or umbrella that you suddenly see. No storm is similiar but being through one prepares you on the off chance that you find yourself in another.

Taking a cursory look at the things I hold dear now is somewhat of a pleasure because they are all intangible, I have seen the utter destruction and loss of material things, I have heard the despondent words that accompany the reality of a hopelesss situation, seen the sheer fragility of our puny strength, witnessed the camaraderie that comes from being in the presence of one who has walked in shoes just like mine, and in conclusion, I know that today’s present state is not a definition of my end. There is no degree of finality that we can conjure up even in the heat of emotions, it is neither our call to make nor are we a creation of our own hands and so if we can comprehend these salient points, then the transformation that births the mythical Phoenix happens. The transformation of the entirety of your being when you acknowledge that we are creations of an Awesome God whose love is never in doubt, is an exhilarating experience with each new day. Those are the things that will never be categorized as debris.

I am not one who spoils for a fight, feeble are the arms that rely on a cane, however I will not quit from a fight and if life with its curved balls and sucker punches deem me a feeble opponent then I am afraid that an error of gargantuan proportions will make its way into the annals of history. What makes me me is not the ferocity of the storm or the loss that inevitably follows in the aftermath of a storm, what defines me is that I have since realised that I have chosen to be on the winning team. Life’s scoreboard might be telling a story to the pleasure and delight of a few but guess what I am still on the winning team and the assurance of victory is what drives me each day. Now I see the glaring ignorance of those who think that they are as indestructible as their wealth safely squirrelled away in the vaults of Switzerland; a generation creates wealth while the subsequent generation spends it completely and so the question that still goes abegging is ‘will you allow the clutter and debris gathered over the years, now out on the side walk determine the state of your life?’

In life we meet to path, and more often than not, we also part to meet. During these sometimes brief exchanges, what will you be remembered for, what light (or darkness) announces your presence, what compassion drives you to be hospitable to strangers, what strength drives you to give your best and some to what ever you are tasked to do. Now I can boldly say that the pursuit of knowledge is a noble cause but when the storms of life hit, referring to your academic levels will be the last thing on your mind. We are so carried away by life and the cheering of the crowd that we often forget that life is a process and within those processes, there are seasons. When the cheering is over and the crowd is gone, do you find strength in your foundational beliefs or you suddenly realize that you never prepared for that aspect of life. Just as God causes the rain to fall both on the righteous and the wicked so also must we realize that our very best is displayed when we allow ourselves to be used by The One who created us. Regardless of the situation of today, that little role that you have been assigned to, remember to do it not for the praise of men but for the pleasure of Him who watches over us.

A couple of weeks ago, a friend of mine; Keith McDonut took the pains to compile the behind the scene experiences of people living with dystonia and I admit he did a fantastic job. I live with dystonia but I am not defined by it and oh sure, there was quite a deluge of comments and ‘prayers’ but after reading, what do you actually do besides making sure your name showed up on the comments section. It is not the perplexity that is outlined in the furrows of your brows as you wonder if that distant  noise is the noise of battle or just the rejoicing of a crowd, it is the responsibility and courage you display when you look around and help another who has fallen back up to his feet. It is not the applause you receive when you give a fraction of what is stored up in your barns that will count for a lifetime, it is the whispered words of encouragement, the sitting in silence with one going through a horrific time, it is that $2 Baconator fries shared in love…..those are the moments that create memories that last a lifetime.

Admittedly, storms always create an opportunity to take stock, re-evaluate and rebuild and so even as the tears roll down grime streaked faces as we embark on the sad part of taking out debris, be quick to remind yourself that you came into this world without a stitch of clothing and so if people helped you along the line to where you stand today, be sure to pay it forward. Elevators are designed to go up and down, but in order to go up sometimes you just have to be patient and wait for the elevator to descend to your floor. It also follows that sometimes the best way up begins from down and so when you get all caught up with the fineries of the 1st floor, do not let this thought escape you; it will only take a storm to make those fancy cars and cellars stocked with vintage wine to become the debris of today. I am confident in certain immutable facts; God designed each person with a unique set of skills so that you can be of use to someone other than yourself and if for reasons best known to you, you choose to hold very tightly what you have been given, the reminder is never a savoury experience.

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Tomorrow

Today is a new day, a brand new blank canvas that awaits the depiction of whatever we choose to and if you choose to adorn that canvas with the continued errors of past years then you just might be like the child who is petrified by the face of a painted masquerade. For me, it is not a default setting; I choose to be thankful for the air I breathe, the friends I have and for every opportunity where I can be of help in making the dreams of someone become reality. Remember this, “Our envy always lasts longer than the happiness of those we envy” –  Heraclitus.. Yet again, we are faced with the option to choose however I want to state categorically that the former bodes no good but the latter is the pursuit of every man.

עד ניפגש שוב, תן את היופי של ארשת פניו לזרוח עלינו!

Adios!

In my armour….

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Full Armor

Every armor has a weakness, so choose where you place your trust

There are mountains high enough to prevent you from seeing the hope in the future. There are valleys so low that they completely drain you of the will to push on. We are all sojourners on this earth and just like everyone of us is distinct so are the trials, triumphs and testimonies that we each get to face in the seasons of our lives. It’s not about bemoaning the lack (anyone can do that), it’s truly about recognizing the lack and responding appropriately to filling it. Today, with temperatures still climbing and a heart still beating, I am once again reminded of the transient nature of life and what we choose to call priorities. Jousting is so often associated with the medieval times that the essence in modern times is completely overlooked. A warrior is one skilled in the art of warfare and more often than nought, his skills are required in battles that are not always of his choosing.

Bedecked in full armor, mounted on a war horse, he faces foes on all sides and even as it is still employed in today’s battles, he must find a chink in the protective gear of his foe. Ironically, it’s the same approach that his foes take, because they know without the slightest doubt, finding and exploiting that chink could very well be the determining factor in what separates the victor from the vanquished. In a bid to ameliorate or possibly eliminate completely any chances of being bested, so much effort is put into protecting that chink because every armour has one. However as we channel all our efforts into staying safe, we fail to realize that victory is not obtained by being safe but by recognizing our vulnerabilities and making them be an expression of our humanity.

I had the pleasure of meeting a friend and his daughter, both from The Republic of Congo, as she had come to spend the summer holidays with him. Yes, another victim of a broken relationship but besides that what else can be seen? I saw a beautiful young lady, probably irreparably scarred but still aware enough to pause her farewell to me and utter these words, “thank you Daddy!”. Just those three words said in that unpretentious sincerity you can always find in a child, made me quietly acquiesce to myself that there’s so much to be thankful for and yet so little of thanking that we do. Prior to her uttering those words, I saw a little girl hurting from her inability to understand what she was going through. Why she had to have both parents in different parts of the world? Why did she have just a little time to spend with loved ones before she returned back to commence a new session of school. In the course of interacting with her, I could discern the resentment because I too have been through similar circumstances. Not just as a child but also as a father, and without allowing Nyela to focus so much on what she was ‘losing’, I made her realize how much her father loved her. That was what birthed those three words, “thank you Daddy!” and as she emerged from my truck, there was a spring to her step and a lightness in her voice. That transformation took place in the space of 7minutes 42seconds, just because she allowed herself to listen to me and appreciate the beauty of the moment.

I tell people, as often as I can, without coming across as a kibitzer that vulnerability is not a sign of weakness but an evidence of our humanity. When we spend so much time hiding our ‘weakness’ from others, we inadvertently fail to realize the primary reason for our existence – to love another just as much as we love ourselves. Proding and prising apart, searching for the chink in another’s armour is time that could be better spent in standing with another and facing the odds we all must face. It is not an expression of wisdom when we hurl ourselves headlong into battles that could be avoided, instead of forming positive alliances with the soul next door with the objective of running this race and finishing well. A recurring question I always have to deal with when I’m privileged to meet someone who has never heard of dystonia before is “How do you cope with it?” Honestly, because of how often I’m asked, I’m pretty sure that if I were suddenly roused from sleep, my answer would still be the same. I do not cope with it, I’m too focused on making each new day count for something better that it’s only the incessant twinges of pain that remind me of this unending battle with dystonia.

I’ve learned that focusing on helping someone else is more fruitful than reeling out a litany of how my body feels. If I cannot change it, why bother complaining about it, because the sad reality is there’s already enough sadness in the world. You have to make a choice between seeing if your own worries will lighten the already overburdened lives around you or trying to alleviate the present pain and sorrow around you. Pushing your pains and worries to the back burner so that you can make room to assist another person who has just been severely knocked off his horse. Yes, we need to guard ourselves but when guarding yourself overshadows the ability to help another, then I would recommend a rethink in strategy. No army is only made up of one warrior, no team of one ever exists however there is so much strength in the unity of diversity. Wisdom, in my opinion, is realizing that a battle is raging on around us and yet we concentrate on building a chain of lives through love, kindness and hope. That collective armor is what will stand true when charge upon charge by our foes hit our ranks.

There is nothing built by man that in indestructible however that which is built by God is. So the choice in where you decide to put your trust in, is entirely up to you. Today, I may not have the resources to give to one in need but what I have is a shoulder to lean on, ears attentive to listen and company for a little while as you journey on. Diversity is what transforms a chaotic puzzle into a beautiful picture and regardless of how impenetrable you think you are, you will need someone else when your storms hit. And so whilst I am committed to burnishing my armor, I am also keen to recognize that not only can I not stand alone, I am here to be a support to someone else. Sometimes, a simple walk in the park holds much more value than a space trip to Mars. The battle is not to the strong, neither is the race to the swift, it is God’s mercies that will ultimately prevail. And if we are recipients of such an awesome gift, why should it be only about you. I reckon, each day, that every blessing I receive is something that can be shared and so with that realization firmly impressed upon my heart, I will always find the courage to press on. Each new day, an amazing gift by itself, is yet another opportunity to stand alongside fellow sojourners and warriors so that together we can beat the odds.

As I remember the victories of today, I am certainly convinced that love, hope and faith are indispensable companions for me. It will never be about how high a stack of corpses you left in your path, rather it will be about how much inspiration you have shared on your path. I may not be able to bring to completion that dream of yours but I most definitely can ensure that the moments we shared will never be forgotten. Life will always be a catalogue of events and as we sail through life’s turbulent waves, some of those memories are the nuggets of indestructible hope that will keep us going. I have always believed that a life devoid of hope is a life that is desperately in need of some love and it never ceases to amaze me how beautiful a rocky path can become when there are lilies growing by it, but those lilies have to be planted first. It is not always about how grand your gesture of magnanimity is, instead it is about how sincere in well doing you are. It is often in the intricate tiny stitches of a woven garment that you find the greatest amounts of love. No matter how fortified you think you have made your armor, someday you most definitely have to get out of it. The question then would be, ‘What awaits you when you have shed your armor? Friends by your side or a gathering mass of individuals who don’t care about what you know.’

Remember, ‘The destiny of man is to unite, not to divide. If you keep on dividing you end up as a collection of monkeys throwing nuts at each other out of separate trees’ – T.H White

עד ניפגש שוב, תן את היופי של ארשת שלו לזרוח עלינו

Adios!

Balancing the scales…..

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https://redzhis.files.wordpress.com/2017/08/balancing-the-scale

“Give a man a fish and you satisfy the hunger pangs of his stomach for but a day. Teach him to fish and you assuage his fears of being hungry” – Maimonides. I grew up with dogs, ever since I got Snoopy as a birthday gift; with his floppy ears and wheels attached to his paws, faithfully following me everywhere. Since then I’ve never looked back, that the dog is man’s best friend is still a fact in contention but not for me, because life has shown me that you find the rarest of gems in the most unlikely places…..if only you can recognize it when you hold it. As a parent, I believe that owning pets was my parents’ way of instilling responsibility in us and I am passing that lesson on to the next generation. Ofcourse not all of my biological siblings share my passion for dogs, however I’m talking about me. One item on my to-do list is becoming a canine consultant, owning a farm where I can breed dogs, socialize them and also be a refuge for strays….that box is half-checked because dystonia swooped in and like the carefully arranged dominos, all my dreams started unraveling while I helplessly watched.

One of the very first erroneous lessons I learnt was that if you wanted a male dog to become bigger, then you took a trip to the vet and tearfully watch your dog being emasculated. Nursing the dog back to health was a responsibility borne out of love and compassion. Despite the emasculation, I cannot recall having a dog with such a growth spurt that it learned credence to that lesson. The dogs could do everything but when it came to reproducing its kind, that was a ledge it could never ever get to and so I’m forced to think that it was just a way of instilling birth control. Immediately I became independent, I waded into dog breeding and the subject of emasculation was an anathema. Yet again, life happened and I had to go through the painful process of being stripped bare so I could learn that no matter how analytical and logical I want to be, there is a limit to what I can do. I learned that trust and faith were more than just words but they embodied a concept that we barely grasp. It is always in the dark nights, the fiery furnace, the valley of desolation, the house of mourning that much wisdom is learned. It is in those times that you realize how little you know of life and its seasons because some lessons just have to be acquired through sheer persistence.

As a kid, barely holding my emotions in check, I remember those visits to the vet. Those memories are so vivid that even if the city was rebuilt, I am certain that I can still locate where the vet clinic was located. Today, I understand that life is like a pair of scales, and each day, we must utilize our abilities and limitations, carefully applying them in the right proportions to get the scales balanced. It’s about learning how to prioritize, emotions and sentiment in check, because until you attain the right measures, you just might spend endless hours fluttering from one pan to the other. And since time is always constant in its passage and many of us unfortunately are yet to understand the word ‘balance’, how then can you apply sugnificant and needed actions? Actions based on a preconceived and largely wrong understanding & foundation will never get you anywhere. And so sometimes, just when you think that you’re on a roll: all stations manned, all hatches properly secured, retirement plans drawn up, that’s when the storm hits you and shakes your very foundations loose. It is then the realization dawns that you are neither The Architect or the Landowner, but just an actor on the stage called life.

Living with dystonia has tipped my scales. Now I find beauty in the stillness of the dawning day, I appreciate the opportunity to help another in need even when I am barely able to support myself. I understand that it might seem alright to bask in the bliss of ignorance but in reality, ignorance has no bliss. It is an empty gourd that must be filled and if you choose to dance around with your empty gourd, convinced that when the drought hits, there will be something in your gourd to quench your thirst, then what a significant display of folly awaits you. The emperor with no clothes on! Even though your meagre wealth has gathered a train of sycophants, the harsh truth is that proudly strutting in your nudity is what is amusing the crowd around you. And someday when your barns are empty and your cellars dry, those sycophants will flutter off to the next ‘big’ thing, leaving you to come to terms with reality.

I know what it is to have and not to have, I know what it is to have people tracking you just to gain your attention and lay out their woes, desperate for some token from your money belt. I also know what it is to be ridiculed because of lack, to be derided because of one’s disabilities, to be scorned because I am different. I know what it is to shed tears of frustration because you know that you cannot get on or off the bus all by yourself. To discard ego and solicit for the attention of a caregiver, to swallow the bitter bile of pride and accept a much needed meal from a stranger. I know what it is to watch with teary eyes as a friend goes fund raising from strangers and people she’d never have spoken to just to ensure I can keep my next medical appointment. I know what it is to realize that the trust set aside for tuition for my daughter is in the negative, when I have to rest after taking a shower so that I can recover just a bit in order to get dressed. I know what it is to listen to the unanswered ringtones and voicemail on a friend’s phone because it is assumed that I am calling to ask for financial aid.

Dystonia emasculates; forcefully taking from you those things you taught were part of your birthright. Things like being a man: providing for your family, doing whatever it takes to cater for your loved ones. Emasculation is not circumcision! They are both processes occurring around the same area but that is all they have in common. The society’s definition of a man can batter the senses as it struggles to readjust your roles as a man living with dystonia. Rather than attempting to corral the chaos, choose rather to dwell on the little details that make life beautiful. The ticking of the clock, the slight scent of the evening breeze, the scurrying of the chipmunk…they might be too insignificant to catch your attention amidst your busy life but those things assure me that there is beauty in the ashes, gold in the blackened hearth, hope and inspiration from my life.

My ability to reproduce or not isn’t what defines me as a man, neither is it in the color and number of my credit cards, it is not in my inability to do a regular 9-5 job or the constant weakness that plagues me. My abilities and inabilities don’t define me, it is what I’m being used for by God that defines who I am. My ability to embrace my caregivers whilst answering the barrage of questions my daughter has as she grows up. My fatherhood is not measured by how long I can stay in the suite that houses my business (waiting for that big break to come), rather it is in the little fun activities I can still painfully participate in with loved ones. It isn’t measured in the dismay that the elevator is not functioning and my office is upstairs, but rather in the silent company as I prepare myself for that one torturous attempt climbing the stairs. It is not measured by the fact that I am barely able to wear my shoes but rather in my daughter’s excitement as she helps me put on my shoes. It is not measured by my inability to play a round of basketball or soccer with her but rather in the slow walk together to the park and my coaching from the bench beneath the trees. I have received numerous ‘recommendations and suggestions’ from friends but they are unable to grasp the everyday challenges I face; that even on my bed, I have to be careful in laying down so as not to set off a dystonic bout.

I am a medical enigma because I am not fazed by what the limitations of dystonia are, I set a goal outside of my comfort zone and even when I am being told, “you should sit this one out” I choose to press on because it’s just one shot I have and so I am committed to making it my best shot in the present circumstances. Yes, there will be the inevitable price to pay as my body painfully tries to re-establish an already skewed equilibrium point, but I gave it my best shot. Like the night owl, I sit quietly and watch, with limited movement in my neck not so much as to gather wisdom but to carefully apply my strength when it’s mustered because I know that regardless of the uniqueness of my situation, I must attain that balance. I do not have all day to spend because my efficiency is indirectly proportional to my time. It is not wisdom trying to redefine laziness, it is laziness trying to appear wise when this is my own race to run.

With every need that arises, a balance has to be attained but in order not to embark on some frivolous wild geese chase, I must first apply wisdom.  Your genealogy might stipulate that you should be tall, intelligent and athletic however your circumstances dictate something else. To grasp the definition of my boundaries, I must first of all acknowledge that there will always be boundaries but what I do within the parameters of my boundaries is a function of the choices I make. To either shine bright like a diamond and amaze or glow dimly like the coal embers and give off the much needed warmth, that is a choice to be made. And even when ego wants to reassert its place, I am careful to remember that ego is like the bliss of ignorance. It is available but not necessary for this season and even as I struggle with the mild irritations that occur as a result of my impaired boundaries, I must choose wisely.

What miseries lie ahead for the one who embarks on a journey without first learning from the experiences of others who have plied a similar path? For many have developed an ardent distaste for courage and are eager to put the blame for their limitations on every other thing including life and its inherent mysteries. Skipping around from stone to stone in the shallow stream is an obvious display of enthusiasm and excitement but it will serve me better to curb that outward display and instead use it in celebrating those who have greatly sacrificed their pleasures for my sake. Nonetheless whilst we struggle with our imperfections, let’s strive to inspire others by making every of our shots count. Even as we take the center stage, our caregivers are an irreplaceable aspect of our journey and without their selfless sacrifice, our journeys would have been choked to an untimely end.

Remember “no one can go back and make a brand new start, however anyone can start from now and make a brand new ending” – Anon E. Moss

עד ניפגש שוב, תן את היופי של ארשת שלו לזרוח עלינו

Adios!

The Abacus Path….

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Count your blessings

The abacus? Oh yes and there are many more from where that came – the hourglass, a logarithm chart, a pair of protractors and dividers, map reading with a twine and a rule. It’s usually funny when in the midst of a discussion with millennials, I refer to a word synonymous with my growing-up days and I am confronted with a look of utter bewilderment, on other occasions it could be a look of utter pity. As time passes by unfailingly, there are those times when we wish for some events in the past so that we correct them in the light of today’s world events. However time once spent can never be recovered and so with each new day comes opportunities to create new and better memories. There is really no gain in seeking to bask in the glories of the past, rather live in the present and utilize the experiences of the past. There will always be the memories to cling to and for those bad ones, their poignancy is gradually lost with time, Affirming the truth that as voyagers, we must make something of what life hands us.

It is the beginning of a new month and the last couple of days have been truly horrendous especially with the summer because heat is a dystonic episode. Again I am reminded that with every hello, there is a corresponding goodbye and so I write this piece in dedication to two unique individuals that I have truly been blessed to encounter. There is truly, for me, no greater satisfying endeavor as learning how to count each day’s blessing because the contrary option would be to give in to the chronic pain that has become synonymous with most neurological diseases. And most assuredly, these villains are ready to pile on more strain to an already over strained system and so instead of conceding, I choose to focus on the benefits of each new day. In the course of my many interactions, I have been blessed to rejoice with those rejoicing and comfort those going through adverse times. No greater examples readily comes to mind other than David Moreau & Dan Gearhart.

David Moreau was an exceptional individual, describing himself as the ‘Tip of the Spear’ at MS Warriors of Hope. Despite his valiant battle with Multiple Sclerosis, he always was eager to share another’s burden. With a love for life, he loved to give when and wherever needed. With his catchy statement,”I am not chronically ill, I am medically fascinating” a statement in essence that just bore testimony to a life based on a resolute faith in God. His last post on social media was at 6am CST, August 1st: “OMG…woke up to increasing pain in my chest, this hurts so bad!” and despite being given the all clear by the ER personnel, he succumbed not to the dreaded MS hug but to a heart attack. A heart that was the source of so much joy and inspiration, he was truly inspiring and now he has gotten the victory over the MS that threatened to bully him into submission. For in the bosom of God, there is no pain, no illness, no sorrow. “Farewell brother, you have run your race and finished strong. Now I am more committed to paying forward every blessing I receive!”

Dan Gearhart is a Parkinson’s Disease warrior but despite that, he is currently one of two major combatants in another battle that ensues. Life all by itself is not the ideal standard for fairness, however what defines a man as a champion is learning to navigate life’s choppy waters and never cease rowing. A father of 3 adorable kids, he just got to see them after 65 days of deprivation and is currently striving to ensure that he remains the loving father to his kids despite being ejected from his home. In all honesty, I understand the added strain of being kicked while you are down because I didn’t get to see my own daughter in a period of 42 months, where dystonia was labelled as a mental illness interfering with my role as a father. However that is in the past, because it is futile to be confined to the past when there is the present to live in and make something of. Today, she is with me and it is just an amazing testament to the faithfulness of God, new blessings with each new day. It is unimaginably cruel when your medical challenges are used as a cudgel to bludgeon you repeatedly however true strength is defined by the number of times you get up after being knocked to the ground. Wars are long and hard but victory is not achieved by sheer brawn but by the application of wisdom and the support of allies.

In the course of my own journey, I have learned that today’s achievements were yesterday’s dreams and so in like fashion, our achievements of today should be the stepping stone for those coming behind us. Learning to number each day’s blessing is a more worthy venture than collating the number of times I wince from the discomfort that is peculiar to dystonia. Despite not arriving at a stalemate with my knees and my back, I am careful in my choice to focus and help another rather than focus on the chronic pain that every little movement causes. Even after the boisterous laughter, I choose to smile through the pain and when the groans become too much to muffle, I still press on. Refusing to be restrained by the clinging tendrils of huge trees and the darkness of the forest, I press on towards the glimmer of day knowing that the slight glimmer marks the end of this foray in the forest. From past experiences, I know that it is not about how gigantic the challenge is but rather the assurance of victory by faith. It is not about my dependence on medication or the flamboyance of some medical expert (David was in the ER prior to his demise!) but rather on my acknowledging that victory has already been won.

Today, I am yet a witness to the birth of a new day and already I choose to celebrate with friends whose birthdays are today. I choose to celebrate David’s victory over MS rather than wallow in the misery of ignorance. I choose to stand with Dan in his fight for his kids: praying that his strength does not wane and his faith not be relinquished in the face of so many daunting foes. Sending a letter to Governor Butch Otter and Lawrence Wasden to prevent calumny and injustice from reigning is an action that I am committed to, because as long as you are able to discern a need, there will be provision for that need to be met. In my journey, I have learned how to nurture that little glow of hope even when the night is at its darkest because I know that the dawn will soon come and so I better not get entangled and hopelessly stuck in the hostile and marshy territory of this neurological nightmare. I have learned that with each significant hit to my FICO, there is more room to display the significant rise when the time comes because I am confident that someday change will surely come.

It is best that each day is begun with the counting of the day’s blessings or else chaos and hopelessness might just seize that opportunity to reign unchecked. There are experiences that truly cannot be shared through words and so I choose not to devote energies towards trying to make people understand what an average day looks like. Once a need is discerned and there is no action supporting that discernment then it is foolhardy to believe that we are not living selfishly. I want to do something when there is a need and that want will usher in supplies. Without denigrating the lives around us, let the choices we make begin by counting the blessings of each new day and when you do, you will find enough to give to someone truly in need. No man is an island unto himself and with that in mind, I live each day eager to assist another even if we are both marooned on the same island. No better reward exists than standing alongside a friend and helping them along in their darkest times, that is part of the reason that explains our present location and were I to nonchalantly take each day’s gifts for granted then it would be foolhardy of me to expect more tomorrow. It is in the little that faithfulness is born and nurtured, so that when the little becomes large, we will be clear headed enough to do the appropriate thing.

Today is another new day, what better time than now to pause and count your blessings. ‘Shout to the Lord, all the earth’ is not an option, it requires full participation and so if there are doubts that still reside within your heart, be diligent enough to rid yourself of them and truly count your blessings – name them one by one if need be and it will really surprise you what God is continually doing in your favor. ‘What lies behind us and what lies ahead of us are tiny matters compared to what lives within us.’ – Ralph Waldo Emerson

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Lasso’ing Sleep…..

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Lassoing Sleep

There will be always those days when it seems like this journey will overwhelm and crush me and in those times, knowing that there are people who are going through similar trials is always a much needed boost. In the last 8 weeks, I have been divinely privileged to have become a member of so many support groups, and just the realization that you can be yourself amongst others without the looks of derision, pity or disgust is quite profound. Acknowledging that for every thinly concealed nonchalance, there is a friend who knows what you are going through. And when you see a request for prayers from a new friend, it is not a gesture for fame or recognition, but a sincere request from someone who is going through torrid times.   With the medical capes of Lupus, Fibromyalgia, Dystonia, MS, Parkinson’s Disease and similar villains associated with the neurological system casting shadows, you can truly appreciate the warmth associated with being in a group of defiant individuals.

One of the support groups I belong to is aptly named ‘PD Night Owls’ because there is one common denominator with all these vicious medical conditions and that is the inability of the body to get its much needed rest. In addition to the ravages being wrecked on my body as a whole and the adverse influence it can have on my social life and activities, I still have to confront those little horrors that come with such conditions. Just like the mythical Peter Pan, I will claim my own shadow someday, (because the shadows of these villains just seek to further highlight mine) even if it requires patience, endurance and skilled needle work. As a child, one of my fond memories is darting around with friends trying to escape been tagged or trying to tag someone else depending on what your role in the game was. With the passage of time however, all the fun associated with that game is stored away as cherished memories even as I attempt to dole out some much needed discipline to a little rascal termed ‘Insomnia‘. The futility of playing that game in present times is more than just age-inappropriate, rather it is one where the odds are so unfairly stacked against me that it would be foolhardy to even contemplate it.

Even with a plate already over laden with all these nasty medical challenges,  insomnia finds a way of converting itself into a sauce that trickles through, further tainting the package with extra foul taste. Ideally, life is a series of decisions and choices and so instead of partaking in an unfair game, I choose to witness the birth of every new day. Again perspective plays a significant role, because perspective is a result of a choice being expressed and so I do not detest the approaching darkness of twilight signifying the end of a day or envy the stillness of the dawning that marks the beginning of a new day. Instead I count myself blessed that I am able to witness the birth of every new day, that is a choice I make, instead of devoting energy towards battling a foe that acts as the reconnaissance agent of a massive horde. I have learned that it is better to study your foe(s) for any signs or weakness and when you do find one, not to let a moment pass by without any action from me. Alternatively, I re-access my armoury, evaluate my relationships/allies and utilize what I have even if it requires a little bit of tweaking.

Most battles are won through the application of wisdom rather than just sheer brawn, and so instead of engaging with insomnia every day, I have learned ways to circumvent participating in a seriously skewed game. It is no longer rocket science that the body as a dynamic system requires a minimum of 8 hours of sleep to enable it reset and be ready for the next day. In recognition of that, what do you do to a body that is thoroughly exhausted and in need of sleep? When the habits inculcated in earlier years of running around in a Ferris wheel, have now turned around to nip you in the derrière. I try to lighten the situation by explaining that the brain is such an amazing creation, and so like a commander in charge on the battle field (safe and secure in the skull); it is still strategising, processing, sending out signals and assigning tasks to a neurological system that is almost buckling beneath the onslaught of neurological disorders. And in a bid to prevent a total collapse of this structure I call my body, I must find a way of reining in this magnificent commander lest in its efficiency, it pushes the body way past its limit.

A warrior in the heat of battle is confronted with two choices; live or die, and inadvertently the choice for life must be backed by commensurate actions or else death would gladly swoop in, ever ready like the vulture circling above patiently waiting for road kill. There is always the option of taking a short cut but again the ignorant will find that short cuts are never the fastest or the safest, and so we realize that depending solely on medication usually has a predictable route. With every dose, the body responds by building a resistance to that dose with time, and so we increase the dosage or switch medication. However, just like the fool belatedly realizes the folly of his ways, more often we belatedly realize the folly of borrowing an hour or two from Sleep time in order to accommodate that last meeting, finish up that work task that could not be left in the office or just tidy up that little assignment that is tied to a deadline that is usually unfeasible. There is no reward that can be obtained from cutting off your nose to enhance the beauty of your face, because if we do not adequately cater to the needs of our bodies, someday just like the Merchant of Venice, that pound of flesh must be required as payback. Contentment is not weakness, it will always be at conflict with the inordinate ambitions that characterize today’s world but it is an inseparable companion in the pursuit of noble aspirations.

Just like the daily battle with insomnia, there is the constant need to keep that tricky balance between living healthy and taking proper care of the body. For me, that balance is key because any slight external influence will not only destroy the balance but the chronic pain associated with daily living would assume proportions frightening to even conceive. You do not have to be sick to appreciate health, and so the same scenario plays out in lives everywhere: feign wisdom and take from tomorrow to assuage today’s needs. Most of us are undeniably guilty of that crime and inevitably the pretentious wisdom we applied will someday be revealed in all its entirety as sheer folly.  For every ill-advised action we take today, there will be the corresponding consequences tomorrow and it is not foolishness to be different. Sometimes we are placed in situations that did not require any input from us but to triumph in those circumstances, we need not embark on actions that are immediately associated with thought process of a child. There has to be an acknowledgement of what is real to enable us choose what we know the finality to be.

There is still time each day for that last valiant charge, a charge that has its distinct base in an unflinching faith in a Sovereign God and Commander. A charge that is not dictated by the size of this ragtag army but rather dictated by the promise of a sure victory ahead. And so, I will emerge from the trench – besmirched with dried mud, eyes red-rimmed, joints aching and clad in what barely amounts to a decent garment. With all the air in my tired lungs, my bugle will ring out across the mountains for just one final time today, notes marking the last valiant charge. Conveying in very clear notes to the foes arrayed all around that there will be no conceding victory today, there will be no terms of surrender and even if I have to be borne on my shield; I will seize that victory that is sure. There will be no ambiguity in my proclamation, ‘dystonia, there is no victory for you today and though you rave and rant as much as you want, there is no victory today, tomorrow or for as long as the battle rages.’

A charge more valiant than yesterday’s, my colors loftily raised in victory, a determination in the cadence of marching feet, there will be a prisoner of war but rest assured that it will not be from my ranks.

For just as your ranks ripple with number, and your fancy capes adorn you, so will they disperse in defeat, heads bowed in defeat, victory snatched.

To friends and allies alike, there is yet hope renewed and though the war be far from over, our anthem booms loud and clear, there is no giving up – not today, not tomorrow for as surely as the sun rises from the East, none will fall by the way because we depend not on the strength of men.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

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!

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!

 

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!

….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!