Tag Archives: Dystonia

Let’s Begin Again…..

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Anew!

Never been to a real AA meeting however I know it begins with an introduction; name, your reason for attending and as much personal information you are willing to share with a bunch of complete strangers, who with time become a small part of what you may term friends. I choose to say that a very few would become a part of your family. I am an ordinary chap – going nigh on half a century chronologically however physically most days I’m more in the nigh on century milestone. I’m a hybrid which can be interpreted in a varying degree of ways depending on what perspective you look at it from. I wouldn’t say a peacock is my bird of choice although I’m a dog lover and not an avid bird watcher, so a Caucasian Ovcharka would therefore be my pick as my animal companion. I am a Christian with a definitely colorful life – having lived and worked in 4 continents playing a huge role in that. Temperamentally, I am a CholMel (Choleric and Melancholic in that order and mix) and I am living with dystonia and myoclonus – primary generalized dystonia to be a bit specific. I was officially diagnosed in 2011, which makes it at least 8 years with no vacation or holidays in between each day.

Statistics reveal that there are 3 million cases of Post Traumatic Stress Disorder diagnosed every year in the United States where I currently call home. Even with my stint in the navy more broadly, law enforcement, I don’t suffer from PTSD. I still have battles everyday although since Christianity isn’t a religion so it cannot be called an opioid, it’s rather the lifestyle I’ve chosen and live by. I tend to describe myself as a very good listener and like the philosophy that comes with life. I’ve been described as enigmatic, prickly skinned but with a beautiful heart – I guess the point is that my range of description depends on the level of relationship I have or had with you. My IQ is above 100 and I’m conventionally educated (spent about 19years doing that), still learning and teaching where and when its possible. I am heterosexual and pretty good at being and staying one. I love writing (and speaking, if asked to), pretty good at whatever I set as a goal, I still do have a fairly long to-do list which includes but isn’t limited to swimming with sharks, paragliding, parasailing and traveling to 3 more continents and Mars someday. I suffer from obsessive compulsive disorder but I control it much better not the other way round. I live with faith and hope and the awareness that life is a series of seasons.

Strewn along

I am quite imperfect and very much a Work-in-Progress, choosing to get up each day with a ‘Thank you!’ rather than ‘Why?’. I have a relatively skewed ratio of good and bad days, in recent times more of the latter which in no way influences my daily choice. I don’t have regrets even though quite a few of my also few friends have transited this earthly journey, their sojourn completed. Admittedly, it’s a really cold world we live in so I’d say the inevitable mudslinging and lemon chucking still hurts probably more now however I do clean up fairly okay. I have about 8 walking canes because I also suffer from intense vertigo and unpredictable bouts of pins and needles, and on the losing end of requiring to get a stroller which in relative terms for me sits a couple of steps above a wheelchair. My regimen of medication consists of a good amount of category C drugs and few Over-The-Counter medications which I lug around with me…….all translating into several discarded shoe boxes of empty pill bottles and a very upset asset of the pharmaceutical industry with an equally rather poor notion of the insurance industry. I know that people rather know how much you care, than care about how much you know.

I am very weary but still I must go on because how you run your race determines what price awaits you at the finish line. There’s nothing that can break a defiant and determined spirit except you give in to it and that’s what I hope to share more. There are no better helping hands better than those at the end of your arms and for my friends with no hands or arms, you still have what will propel you through the rather frequent desolate seasons. There’s no oasis better than that in God who created and created all things with the best quality control, and therein might be my message to myself. It’s not impudent to ask for help but the results are guaranteed when we ask Him because I know He knows what I’m going through and has made the appropriate resources for this sojourn of mine.

There are times when it feels like the end of the road for me, nothing more to give, still nothing more to gain however I know that it’s in those times that He’s closest to me and so even when even the melatonin refuses to work and my muscles constrict in agony, seeking for relief from an overly active brain firing away on all fronts, I still choose to say ‘Thank you Lord!’ rather than ‘Why me Lord?’. It’s in those moments like today that I remind myself with this quote, “I was given this life because I am strong enough to live it!”

עד שדרכינו יחצו שוב, תנו לאהבתו ולעוצמתו להנחות אתכם!

Adios!

When the Music Fades…..

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Fading Away…

Two days ago, my brother and friend committed the earthly remains of his wife to the ground. And it’s still a shock to me however that’s the fact, she who I asked after a week ago is no more and with a voice weary from pain and sorrow, my brother acquiesced that regardless of circumstances, we are strengthened by God. With God, there’s no limit to His Strength reserves however in times like these, I’m quickly reminded of how fleeting life is. Now, the future belongs to Ben and his little kids and moving forward isn’t an option but a choice to be made even amidst the grief and sorrow.

Being an ardent believer of faith, I cannot describe the deluge of emotions he’s going through however I can do something, and that’s be a friend and brother. We were not created to be in isolation however without a complete grasp of what our purposes are, we must trust Him who made us and keeps us grounded to things that though transient in nature they may be, yet the spiritual connotations are immense. The reality that is gradually being eroded in today’s world is that we have juxtaposed two parallel truths; we are spirit beings on a human journey and not human beings on a spiritual journey. Our destination determines and influences the choices we make because it does not require a degree in theology to acknowledge that to this life we live, there surely is an end and to every end a beginning. The question therefore is where and what are our priorities?

Having lived with dystonia myoclonus for nigh on a decade, my life’s journey has been nothing short of a roller coaster of miracles however still I press on disregarding what today’s circumstances are saying. Life is fleeting, measured in moments and therefore it is befitting that we use the temporal to secure the permanent. With each waking moment, I ask myself, “what if it is today?” and that I assure you greatly assists me in prioritizing. Be it in little gestures of kindness and compassion, a life is touched with joy and a journey continued with hope. I therefore find it rather bemusing when I see a need that has passed through lots of people but yet remain unchanged, and when it eventually grabs my attention, rather than pass it forward, I try to ensure that it doesn’t remain the same need when I received it.

What’s the wisdom in gathering what is temporal, intentionally ignoring the needs of those around us, only to leave it all for someone else – sometimes people we never knew. I’d opine that’s a question best asked and answered individually. Recently I marked a milestone in my life that many haven’t, and the amusing thing is that I wasn’t stressing myself out and so what a delight it was. A gift unexpected but really needed. To share something ongoing, we embarked on a funds drive for a school project and this necessitated soliciting for contributions. One remarkable thing I’ve learned on this dystonia journey is that life is as unpredictable as the weather. Yes, you can make forecasts but more often than not, the forecasts are not always spot on. I guess then that the unpredictability of man is something that should be no surprise to us however it really hurts when you get doors slammed in your face. It really is inconsequential whether the door was shut politely or slammed rudely, the truth is disappointment doesn’t really have a closet full of attires.

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It,s just a door.

Pretty certain these responses are not strange to many, “I’m sorry, I’m currently not in a position financially to help!” but the stranger thing was I got this response from 3 people who do not know each other, live on different continents and are almost at the peak of their professional careers. Was I upset? Definitely not, because I’ve learned that we (not me anymore) earn to make a living but we give to make a life and so for me, I always choose to make a life by giving from the transient accessories of my journey, no matter how scarce they may be. Just like attending a concert, we have let ourselves become so dialed in focusing on the performance that we often forget who is just by our side. No matter how long the concert lasts, there will be a time when the end is nigh and the music fades. After that, we must move on or remain trapped by choice at the wrong location doing the wrong thing.

The most inspiring people are not those measured by society’s definition of success but rather those who have consistently used what they’ve been blessed with to bless others. As I horrifyingly witness the inevitable slide of humanity from the core values of yesteryears to something that can only be described as inhumanity, it simply expresses how easily we have forgotten who we are or who we were meant to be : to shine light in the darkness, to sow peace where strife exists, to love when we feel the least like loving; that almost summarily in one broad brush stroke describes what our lives should be.

Do I write from a place of resentment? Heck, no! There’s barely enough room on my plate to actually take the best care of myself and medically speaking, going down that route bodes nothing but ill-will for me. The beautiful thing about faith and trust is that we push ourselves to heights previously unattainable and see things from a completely different perspective. It has never been about you; casting doubts and fears away so that we are unburdened and ready to walk our path with nothing but trust in The One who made us. To many, it might seem foolish but remember the music fades at some point and beyond that, there’s little left for us to do. What we did is what will matter and woe betides the man or woman who fritters away the future for today’s pleasure, despising everyone else that doesn’t fit into your carefully selected category.

It is sheer wisdom to realize that what matters the most is not what we receive but rather what we do with what we have received and so I opine that keeping this fact in front of us will inadvertently put us on the right path. Even as I grieve alongside my brother, I am confident of this fact that He has not brought us this far just to abandon us and when it seems like I am abandoned, that is when I know that a transition is on its way and so my job is to brace myself and keep pushing ahead. “Tough times are inevitable, and this is a fact many of us don’t actively try to face. But if we recognize that we are capable of doing so, and we are prepared in our attitudes and philosophy, we can grow as people and go on to push the boundaries and experience a richer and more fulfilling life.’

Let us remember that “Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.” – W.E Channing

עד שניפגש שוב, מי ייתן וcountenace יזרח לטובה עליך!

Adios!

Days, Events, People!…..

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I am in the habit of sharing my thoughts in some of the most ingenious way because sometimes the world just seems too gloomy for inhabitation. I had a tank top made in London with the caption; ‘Everything seems funnier when you are not allowed to LAUGH!’ Now that is my general overview of the human emotions and the workings of this complex system we call our bodies. Up one day and down the next, and this is deniably the trend for a majority of us however when you get that feeling that something is really off with you then it is best to check it out. A full bellied laugh is such good medicine to the soul but we do not have to wait to be pigeon holed before we act as human beings.

Within the last 6 – 8 weeks, I have been barely active on social media (which includes this) because for some unknown reason, it just seems like my body is gradually coming apart at the seams. Wracked with relentless bouts of severe back spasms, unpredictable as usual, it has been more than a task to sometimes breathe freely and although the words, ‘NEVER GIVE UP’, are always within eye sight, it just seems that every round might be the one that finally bests me. Nonetheless, still I strive and with the unsure gait of someone who seems to be inebriated, I choose to take it one step at a time. And when I do have to let out the occasional groan, it is not for want of attention but rather a vent to all the pain going on inside.

All over the world, calendars are marked full with international celebrations (the dates may differ depending on where you are) and it is quite amusing that we still are wary of seizing our destiny or better still yielding to the capable Hands of Our Creator. We are creatures of purpose but the inevitability glaring us in the face is that without identifying and then understanding our purpose, abuse is certain. And as is oft the case with me, i take a step back and just try and grasp my own perspective of things. May 12 marked Mother’s Day in North America and what a beautiful day it was, there was no rain despite the fact that the day before the roads were flooded and the forecast was pretty grim. But still it was a beautiful day to celebrate mothers; that unique category of individuals who are for the lack of a cape, our modern day superheroes. Mothers in this post is a title that transcends biology, age, race and cultural proliferation!

Happy Mother’s Day!
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Truth be told, there are men too who would unashamedly be celebrated because of their parenting skills even with the added difficulty of being a single parent but then what about the countless women who single-handedly make the world a less dangerous place for their children. And for the men just mentioned above, the truth is that without a mother, it would be a case worthy of debate that you might very well not be the man you are today. Parenting, undeniably is hard work and just some hours ago I had a conversation with a friend who I had texted ‘Happy Mother’s Day!’. It was almost the same conversation as she bemoaned how difficult it was just trying to keep the home in one piece without letting the bills breach the hull of her home. Did I have the wise words that would make it all disappear? Definitely not, however I did let her know that we never know our best and if we let the pursuit of the tangible break us then what a twist of fate it is. It is my own opinion that life wants to put you on a treadmill with broken control knobs and if you choose to remain on that treadmill then better get properly strapped in because there is really no end in sight until you keel over in exhaustion and transit this life.

I have since learned that even though there are certain dates marked off on calendars hanging on the kitchen wall, it does not require a feat of supernatural strength to simply appreciate on a daily basis the sacrifices people make on our behalf. I remember when I was liquidating every asset I had at the onset of this battle with dystonia, and literally going around with cap in hand (if only I had an inkling as to how expensive the battle would be…), I was asked by a few would be helpers; “have you disposed of everything in your name?”. Summarily and predictably, they never did show up with their funds and my question till date is; when you see a need, do your actions depend on what the needy already have or do you just give regardless and move on. Funny but many of us are wannabe givers but then we need some justification that your hard-earned money will be the last piece to make the puzzle complete. It is just another tiny detail that we very often forget; we made our entrance naked and will depart in the same way so all that you gloat over daily isn’t really yours. Please work hard but remember every blessing we receive is a gift from God!

Mother’s Day! Heck there are 365 days in which to tell a mother that she is truly appreciated, why wait for that one day and oh by the way if you are on the taciturn side then there are also 365 days to tell people that you encounter daily how special they are. It is rather amusing that we bind ourselves to a piece of paper that seemingly dictates how to appreciate people. Unfortunately, I recently lost a mate and despite the pleas not to stress myself, I wanted to and eventually did give something to ensure his family is not left desolate. Did it cost me something? Oh it definitely cost me a lot but what a joy it is that I could be part of something that defining – letting someone else know that they are not alone. For me, hearing conversations like, ‘the family seems to be doing well’ or ‘the family is financially buoyant’ is just a huge downer. Give because you want to and not because you think they are desperate. I can assure you that desperate times are not the best of times to act especially when there were windows of opportunities to act in good faith.

For every breath we take, I know there is no record keeping of how much air we consume neither is there a quota that you are entitled to. And so if that is the case and we truly acknowledge that, then be as generous as you can when you can. There is such profound joy in giving, ignorance is a choice you make intentionally. I bade my family every night with these words, “Sweet dreams, I love you and I’ll see you tomorrow!”. I am by no stretch of imagination the timekeeper but I do know that now is all I have got and so it definitely falls within the category of the wise to make NOW count. My dad told me this years ago and they are still relevant, “A parent who is unable to ensure his offsprings have the opportunity to become better than him or her should be deemed to have failed.”. I do know that it is subject to debate because there are choices to be made however what we can do today is look around and put a little glimmer of sunshine in someone else’s life.

And so to all the mothers (this transcends biology) out there who consistently refused to be overwhelmed by the dictates of child upbringing, I celebrate you today, tomorrow and the next. Thank you for the sacrifices made because now we can invest in the next generation without tying the investments to the portfolio size that makes us feel comfortable.

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

Adios!

The reverberation of silence…..

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Silence!

“Be (known as) a person of persistence and endurance. One person with persistence, commitment and endurance will accomplish more than a thousand people with interest alone.” – J. Mason

When and where we are birthed is not a decision that provides room for our opinions to weigh in. We emerge, most times, angry at the doctor or nurse who swatted our bum while we also vociferously complain at the change in our residing address. That really does nothing to the process of childbirth and/or family building, we eventually get to accept (some of us pretty early and others pretty late) that there are things/events we can change and others that would be a manifestation of sheer naivety and wrongful application of energy were we to attempt changing them. That’s where serenity comes to play, giving us peace to go through those events we have no control over however wisdom is a prerequisite to enable us tell the difference.

I recall my first solo Christian outreach as a University graduate some 16years ago and was it an eye opener indeed. Not only did it satisfy my urge to go to new places but it also made me realize that entitlement is a unique word and not the very best to use in our common, everyday conversations. There I was, in a little village populated by about 100 families who had chosen to question the predominant religion. No schools, no water, no electricity but all around them these same ‘necessities’ were available to others, a reward for their conformity and reliable apprehension at rocking the boat. I juggled having summer classes, learning the language, helping on farms and talking about intangible treasures that are stoutly backed by infallible and unbreakable promises. Talking about streets of gold to someone who had never seen an asphalt road is not just a gigantic stretch in imagination but it also kindles hope, strength of purpose and incomprehensible peace.

Trust is something that is inevitable to life. From the moment you open your eyes to a new day to the moment you shut them at the end is a journey of faith. You unknowingly believe that you will live, you believe the atmosphere can sustain your respiratory system, you believe that your feet will hold you up……you believe without an iota of doubt because that’s what science says. Who made science? There is always a source, an origin if we choose to apply ourselves to searching however there will always be the plethora of unanswered questions that make life more of a mystery than just a monotonous exercise. And those unanswered questions, we believe will be answered someday. That in a nutshell was one of the minor reasons that made me enjoy my stay and plan another visit the next summer.

On the faces of children and adults, I could see contentment and unbridled joy because they chose not to dwell on their lack (they were not anticipating a turn around so soon or the coming of a messiah) but rather focus on The One who holds all of life in His hands. They could relate with that! They could relate with the fact that life in itself is a season, and just like every agricultural community, they understood seasons – every season begins and ends someday. From the starry eyed kids in their worn-out clothing to the fierce gleam of defiance in the eyes of adults, I learned that what we need the most in life is companions that are eager and willing to walk some way with us as we journey through life. And not just any company but the distinct few who walk in agreement with us, come rain or scorching heat. I learned the beauty of silence, not the silence of indifference and nonchalance, but the silence that brings the realization of our existence as humans devoid of all the frenzy of the big cities and wholly dependent on Our Creator.

Like Spinoza says, “no matter how thin a slice is, there will always be two sides.” We may choose to butter both sides and deal with ensuring we don’t get dirt on our faces and clothing or we may choose to be thankful for that slice regardless of the availability of butter or not. I recalled this life changing experience because once again, I’m embarking on something completely foreign to me as I grapple with dystonia. An entirely unprecedented chain of events for those who know me just a bit. However with a life as unique as mine, you develop the knack of ignoring the bumps (& associated pain) from the thrown lemons and focus on making some lemonade. It’s not just trying to survive (a puny task I dare to opine), it is instead recognizing the circumstance and adapting to ensure your purpose is not derailed. The purpose always counts, and what we put in today and tomorrow will always determine if we are striving for excellence or just pretending to enjoy (while cringing internally in absolute terror) the waters as we are hurled along in no direction by the strong currents of life.

…..and you are???

“In the end, we will remember not the words of our enemies, but the silence of our friends” – MLK Jr. No life can be lived in isolation and although we do not get to pick our families but we do get to pick our friends, and yet again we believe that most of them will be there for the long haul despite the occasional squabbles. The journey we all embark on will have its fair share of storms, and sometimes during those storms, what we crave the most from our friends is not just a deluge of words alone but sometimes that walm hand that is quietly slipped into your hand, reassuring you that you are not alone. So many times, we are so unsettled by the silence that we fail to see and appreciate how consistent and little our true friends are. Their actions are not preceded by a definitely not-so eloquent speech or a forwarded ‘do not break the chain’ prayer (insincere and bothersome). True friends are found in the silence.

However there will be those times when ego has even gone to ground (for fear of identifing with you) and your outstretched hand is completely ignored. It is in those times that silence, if permitted, becomes a complete set of percussion instruments all wailing in discordance. That is when silence becomes a banshee whose voice threatens your peace of mind. It is that silence that cuts the most deeply, leaving a wound that may seemingly never heal. And still, even as the silence reverberates all around you, there is still a choice to be made – give into the insanity that the cruel, intentional silence of friends offer or find that quiet place deep in the recesses of your mind where no hand can touch. Retreat there to ponder on the fact that life is a process and it is the approval and relationship of God that counts the most. On the many occasions when friends align with the enemy through their silence and it becomes nigh impossible to differentiate friend from foe, then you are forced to remind yourself that no man has a plan that makes total provision for you, it is then you just must find Him.

I learned from that first experience, even in the silence, beauty can still exist. When the words from the lips of companions are like the falling of brown leaves, lifeless, insincere and meaningless. When their gestures threaten to extinguish the sliver of light you have because their intent is not to act but to be seen as being active. It is in times like these that I cling fervently to the promises of a good God who is not man that He would dare cast shadow on His Word. I remember that it is not the seeming abundance (just provocatively beyond your grasp) around you that counts but the ability to bask in what you have been blessed with; hope, purpose and a destination, that is what counts when the silence descends on you.

Remember, “We need to find God, and He cannot be found in noise and restlessness. God is the friend of silence. See how nature – trees, flowers, grass- grows in silence; see the stars, the moon and the sun, how they move in silence… We need silence to be able to touch souls.” – Mother Teresa

עד ניפגש שוב, תן אהבה שלו למלא ולשמור אותך!

Adios!

In the stillness…

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Be Still

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

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

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

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

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

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

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

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

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

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

עד ניפגש שוב, תן אהבה שלו למלא ולשמור אותך!

Adios!

A cuisine of herbs…..

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Herbal Broth

“Men of genius are admired. Men of wealth envied. Men of power feared, but only men of character are trusted.” – Arthur Friedman

Character is not a gift, far from it. It is the end result of a process, and more often the process is back-ended with loads of trying and very frustrating times. However it is in the process that character is formed and from an engineering or building perspective, forming or forging is tasking on both the smithy or technician as well as the object being worked on.

Children are truly precious and even though I have heard many rueful comments concealing wishes that babies would stay babies, there is no negation of their pricelessness. But alas even at that, those wishes are an aberration in life because change is inevitable. Several years ago, I recall trying to explain to my 4yr old daughter why she needed to eat her veggies. It was both amusing and just a tad annoying seeing her with brows puckered in a frown, assiduously separating the veggies from her meal. A couple of months later, with a hard fought win tucked in my belt, I remember her complaining bitterly that she was outgrowing her fancy shoes because she was eating tomatoes. Today, that’s a memory that she vociferously claims never happened.

I have come across some very fascinating people (pretty sure I am listed under that category in someone else’s journals); a chap who believed water was solely to be used in CPAP machines, humidifiers et al, another who believed bread was created specifically for culling the human race. However one thing that acts as a common factor across all types is that regardless of our perspectives, in order for there to be growth, sometimes we have to make some concessions. Growth in itself is not always that process that we so eagerly await because with growth, there’s always some form of discomfort however yin yang is one of the many attempts at explaining the process. Life consists of many exercises encompassing the need to understand and appropriately apply balancing.

Most often, the largest obstacle to our growth is the image staring back at you when you stand alone in front of a mirror. Ignorance has never been the best of reasons for the mistakes we often make because we are humans however embracing knowledge is setting ourselves free. No matter how hard we battle with the process, we just have to delve deep into that herbal broth because therein lies the very nutrients we need to grow. The more of a struggle we put up, the more exhausted we become and the more of a delay we unknowingly throw in our own journey. Understanding all things is impossible but in order for us to move on, we must embrace hope, trust and faith in The One who we owe everything to.

Right now, it’s quite a struggle for me, because having a sprained shoulder definitely gives me no edge over dystonia. However it has forced me to search out untried ways of reaching my milestones and attaining objectives. In this season, I have had to remind myself that although herbs might be bitter, I had rather look beyond the bitterness and dwell rather on the intrinsic positives that come with ingesting them. Trying to make head of everything at this moment would simply be an exercise in abject futility and so I am yet again reminding myself that waiting might seem pointless but there’s so much more going on that remains unseen. Someday, like the phenomenon of the Chinese bamboo, there would be a visible and significant change in who and what I am today.

Engaging in battles with myself when I so obviously do not have all the answers is not moving on. For there to be a move in the right direction, sometimes we just have to admit that although we have the vision, there’s also the undeniable truth that time and chance happens to everyone. Every life; a piece in the puzzle of God’s masterplan, we each must apply ourselves to the circumstances we find ourselves because in doing that, we do not only recognize divinity but we also positively affect the lives around us. Our positions today are a function of the lives before us and so selflessly we ought to also pay it forward. Ridding ourselves of every bit of resentment and bitterness that we allow build up in the face of opposition is usually a step in the right direction, because failing to do that irreparably hurts us and self-inflicted wounds attest to ignorance, naivety and sometimes just plain old stupidity on our part.

No battles have been won without making room for a retreat when the horns sound. And yes, most battles are won by the side that stays longest in their trenches because sometimes all that is needed is to hunker down when the barrage seems unrelenting and wait for the silence and peace that is the prelude to the joys of victory. In our frenetic lives, we get so enamored with the society’s definition of success that we fail to realize that we are trampling underfoot the very herbs we need for nourishment and growth. And so when we are falling headfirst into the chasm that signals burnout, then we realize the utter folly of our wrong choices. Failure to recognize the need for reassessment, rest and a possible detour is entirely nobody else’s fault but ourselves.

Trying new and unfamiliar ways do not in anyway portend emasculation, rather it is the highly undervalued second opportunity that we so urgently require. Today represents another opportunity to realign ourselves with our purpose, today represents another call to wait in trust because His Promises are true and infallible. Though they tarry, they are in no way having the similitude of or are they denials. With the patience of the lapidarist, a trait that comes with discipline, we must be thankful for what we have before us. And when we start to entertain doubts regarding the safety found in the multitude of counsel, there’s One Counsel that is completely devoid of the slightest of shadows.

Nourishment is not fast food engorgement, and whilst the latter is so easily available, the truth is that the herbal broth (though plain looking and bland tasting) is what is needed to initiate the growth needed to occupy the next season in our lives. For us to grow above and beyond today’s bleakness, there has to be an acceptance that every experience can either be a stepping stone or just another stone in the wall that further shuts out the glimmer of tomorrow’s riches. I choose to make mine a stepping stone and even in the silence of being different, I am thoroughly convinced that when the night seems to embody just weeping, surely joy and growth comes with the morning.

Remember, rather than complain about the thorns among the roses, be thankful for the roses among the thorns!

עד ניפגש שוב, תן אהבה שלו למלא ולשמור אותך!

Adios!

CEO, Inspiration Inc…..

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To start with a rueful comment about how frustrating writing can get is right about apt because how else could I tag the emotions I felt 7 hours ago? Finished up a piece and was putting on the bells and whistles, suddenly Shazam!it’s gone and when the device in use is my back-up, suddenly the realization of how much I miss my laptop is suddenly brought to the fore…..Oh well, since I do not want to ‘join’ the vanished piece then I guess the best course of action is to shut down, call a time-out and welcome the new day. That I would categorize as being one of the unsavory duties of a CEO, there is no other table for the buck to go to. This event along with the ones happening in recent times make me question how busier can living be? How can I live without writing? It started off being an avenue to channel all the hurt, bitterness and resentment in a positive way but now it is becoming a vital part of who I am daily.

“All men dream, but not equally. Those men who dream in the dusty recesses of their minds wake in the morning to find it was but vanity but those men who dream by day – these are dangerous men, for they dream with open eyes to make their dreams comes true.” – T.E Lawrence. Right off the top of that, I think I class myself as being ‘dangerous’ and were it not for the constraints of dystonia, I probably would have pursued a career in which danger played a huge role. Why? Danger lurks around every corner so why not best it as quickly and as often as you can however it is essential that you know yourself – stick to the shallow side of the pool if that’s the extent to which you can push yourself.

I have since learned not to view myself as strange whenever I tell people that I do not dream (and this is whenever I am able to wrestle insomnia to submission) but dreaming due to the heavy influence of lofty aspirations and objectives, that therein is a totally different subject matter. This is what I do when life chucks lemonades at me, I pick myself up, ignore the bruises and welts and find the nearest food processor and make some lemonades (summer is fast approaching anyway). Although turning and tossing, watching the hours slip by elusively is no fun but rather than give in to grumpiness and full-blown irritation, I dream and then act because I know time is no servant of any creation. Developing that uncanny ability of identifying the pros and cons is not very difficult but transforming the cons to pros is where the heavy lifting is done. Can all men dream? Most definitely! Can all embark on making those dreams come true? That is a question best posed and answered by individuals whose lives are greatly determined by their personal choices.

Some weeks ago, I posted something on social media and one of the many comments (in interpretation and in literal candor) was ‘you are an inspiration!’. Well dystonia or not, compliments are a pretty good boost to one’s psyche however over the years, I have somewhat become adept at separating the default comments from the sincere, unreserved comments. Now I do get to hear that comment frequently but for some reason, this particular day’s comment got the huge wheels in my head churning (which is something I try very hard to avoid because of the adverse consequences, it is so wearying getting them to stop) and I alluded to the fact that inspiration is a lifetime career with a lot of pomp and allure but ironically no financial remuneration. Oh, that sounds really grim especially when today’s world operates on the measure of tangible wealth that translates to an individual’s net worth. I do opine however (and most assuredly this is not borne from a place of lack) that if we were to tag everything in our lives with a physical cost, that would be utter shameful because then it would be most uncomfortable explaining why many lives are constantly in the red.

I remember that during those ‘ship-up or ship-out’ regular exercises as a growing child, one of the oft repeated phrased associated with those exercises was, ‘this exercise will help stop you from behaving like a gutter bred child!’ It took me a couple of years to completely decipher the meaning especially since it was associated with those frequent exercises and despite the fact that I truly was a ferocious reader and hungry for idioms and definitions but even those were not strong enough motives to ask a visibly upset parent to explain what that phrase meant. In the acquisition of knowledge, seeking the truth and/or definition yourself usually is the best way to go because when you do get the meaning, you somewhat get a personal patent that ensures nobody can take it away from you. And so attempting to tag a price to everything we do is akin to behaving like a gutter bred child, however the gutter has never been ranked on the list of suitable accommodation for humans. So get the heck out if you think you are in one or have been told most of your life that the gutter is where you deserve to be.

Every new day, I am thankful for the countless opportunities to be inspired by the lives and events that occur around me but most especially I am inspired by the false facade that many put up because when you just genuinely show some humanity, then you are confronted by the turmoils that many face and are trying to hide from by concealing them beneath this thin veneer. Just as the trickle on the surface of an aging dam is a sure sign of the torrent that will follow closely, so is the certainty that someday that facade will crumble underneath the pressure of trying to avoid charting your own path. It takes little or nothing to travel on a well worn path but remember that just as our DNA varies so do our purposes and so investing energy into determining your own purpose amidst the jungle of society and swinging at it with a machete will ensure that you forge your own path and help another begin theirs. We are all interwoven at some stage in life and we may begin together but remember that ‘in life, we meet to part and part to meet’

Life is an exercise in attaining balance; giving vs receiving, listening vs talking, empathy vs cynicism, kindness vs cruelty…the list goes on and at every milestone we attain in life, we must choose what side we want to be on. Seeking ensures finding, asking ensures knowing and knocking ensures access to doors we hitherto presumed were non-existent. It is no easy feat living your life but jumping on the band wagon is not an option because you really have no say as to the direction of the wagon. Being an inspiration means that more often than we think, we give a fellow traveler some company for some distance but then she/he must veer off when the time comes. Sprawled on the canvas of a boxing ring after a flurry of jabs, hooks and flush upper cuts does not give me the license to remain there and be counted out and so despite the urge to remain there, I must get to my feet and give it all I have got and some. And even when it is just the rings that are keeping me upright, there is a person or two out there who can truly draw strength from your fight, so keep at it until the bell rings.

With every new day, I strive to push myself just a tad more than I did yesterday and even when my body is playing out a symphony of agony and pain, that is not enough reason for me to stop, I just have to rest a while and then forge on. And when the inevitable opportunity of meeting a fellow traveler down on his back shows up, I will yet lend him an arm and pull him up. With arms interlocked, feet struggling to keep going, I can still whistle up a jaunty tune to make those moments worthwhile. We are a sum total of many parts and lives, and so to everyone who has played some role in my story, I say, “thank you for being an inspiration!” Because although today seems like it could be my last, I know with certainty that my destination is a place where the constraints of this feeble body will be no more. And so I apply myself as much as I can, without the lurking shadow of doubt to scare me, knowing fully well that ’tis but one chance I have got and so regardless of the cards in my hand, I will do the best I can with them.

Remember that “the real measure of one’s wealth is how much we would be worth if we lost all our money” – Zig Ziglar. Now that is a tough pill to swallow but as long as we remain adrift on the sea of life, we must acknowledge that time and chance happens to all.

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

Adios!

Staying True…..

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Staying True

In a few weeks, we will be saying farewell to 2017 and ushering in, with bated breaths and the hope of better things to come, a brand new year. And again as usual, many journals, note pads et al will be whipped out so that the annual yet publicly unrecognized event of New Year Resolution writing will begin. For me, it is a time of evaluation, assessment and preparation because what future will there be to look forward to if we are still perplexed as to our purpose here on earth. Has the dystonia been cured? Nope! Are there new proven medical approaches towards ending this relentless battle with dystonia? Not to my knowledge but the ultimate question I ask myself is “what was there to be thankful for?” And my answer is, much more than I anticipated because it is really not about if my eggs were scrambled right or my account balance is quite ‘attractive’, it is about realizing that I have been through 365 days and still standing.

I recently unearthed my quotes book from one of my many traveling bags, brown and well thumbed, ink slightly fading (thank God I used red and green ink) and the first question my daughter asks me is, “Daddy, can I keep it?”……..Uhmmm! Of course not, you have more writing and reading materials that I had at your age but in that brief exchange, I can truly be grateful for the prayers answered, those pending and those that I received when I didn’t ask for. It is weird when people are taken aback at how leisurely I handle some stuff but then there is always a back story, and it is within those stories that life lessons are passed down from generation to generation. I am not a witness to any man-made life transforming physical attribute, the emergence of an Adonis or the perfect being but I am and will be a witness to the countless things that we take for granted because we are in our carefully carved out comfort zones.

I am thankful for the many friends that have passed through my life, some still there for the long haul while others have moved on as their life purposes direct them. I want to without permission talk about the relationships that have left indelible marks on who I am becoming and as I write I cannot help but marvel at the laurel, awards, certificates that bear my child’s name because she represents the next generation and whilst there is breath in my lungs, together we will journey for as long as I can and even when the wagon wheels fall off and I am unable to put them back on, I know that there’s help just around the corner. One thing I do not mind telling her everyday is that she is not an option but a priority and I am thoroughly stoked that we journey together and when the time comes for her to leave the nest or for me to transition to grander lodgings, I will proclaim that I do not have any regrets.

For me, regrets are an admission of not being able to retrieve a learning point from every experience and like I tell my few friends, I have seen more than my fair share of curved balls. And so it is not about how hard the balls hit but what they made me acknowledge even as I move on. Photography will always be a hobby of mine and even though it is becoming increasingly difficult to engage in it as much as I would want to but the stories that my pictures tell are worth lifetimes. It is in the brief or prolonged encounter that I have had with the lives that I have been greatly privileged to meet that make me truly say I have no regrets and to a great extent, I have stayed true to who I am, which is just another way of saying that I have tried to walk the paths laid out and defined for me by God. He truly is the bane of truth and no compelling discourse will change the foundations upon which I have built my life.

A couple of weeks ago, I drove through the night with tears cascading down my cheeks because no matter how many tough storms you have been through, the reality is that each storm actually reveals layers that you might never have known existed. And I have learned that even when you are down, you will always find strength to reach out to a friend who is desperately in need. In my opinion, there are those people who for some unfathomable reason are unable to grasp how important they have been to me and so it is not uncommon to tell people that I love them just for who they are. And so the tears were for a friend who is counting down the days to a miracle or to a transition to loftier dwellings. I have since learned the futility of asking why does it seem that bad things happen to good people because I have also realized that it is because those events are suited for a particular cadre of people, who do not even know their own strengths and so inadvertently it is not so much about bad things happening but the evolution and growth of truly unique individuals.

Keep hope alive

I know first hand, what a torrent of feelings you experience when you are told that the medical issue that you have persistently battled with is not going away. It almost seems like a black hole has just opened up in front of you and is desperately tugging at you but what if you refuse to give in and just fight. Sometimes every other person will tell you that it is pointless to do however remember that people did not give up on you, and so even if it’s seeming like your twilight has come, remember that the choice is ours to create memories that will not be so easily forgotten. Even when you are being pummeled and the obvious option is to just give in, remember that there are lives around you and regardless of the time of day, hope is like a little flame that shines through the darkness that seemingly grows in magnitude every day. I may not be as mobile as I used to be however when I realize with stunning clarity the countless privileges I have received, the least I can do is to pay it forward. And so even when it hurts to smile, and you can can barely get up from your bed because the slightest pain causes you to break out in sweat, when it seems like curling up in the fetal position looks quite appropriate, let this fact not escape you – there’s something you can still do.

More often than not the battle of life rages in the mind and so its not about how many iron man competitions you have participated or how many marathons you have run or your ranking in obstacle races, when life hits you – the battlefield rages in your mind and yours only, and as long as you do not give in to the wilting of the mind by focusing on the horrifying monster in front of you, you can still be a beacon of hope. Hope that you live is hope that heals and you may have been written off by people but in the fullness of time, God always comes through on your behalf. That is a message that you must share because in all reality the world is increasingly becoming like the Dead Sea but the sliver of hope that you hold, the little spark of kinder can light someone else’s candle and so that in itself is a purpose and one thing I know is that one of the greatest gifts you can ever have is the opportunity to finish strong. Refuse to let the circumstances around you – the hair loss, the painful torquing of your spine, the inability to keep food down, the weight loss etc do not let them define you because I know you and I have loved every moment I spent with you.

Those moments where your laugh rang out, when your eyes twinkled in mischief, when your company was the only thing that kept me going – there is more than enough for me to treasure you forever. And when you hear that the chemotherapy is not working and your life is reduced to the slowly running out sand in the hourglass, stay true because you may not have gotten all the gifts others take for granted but you still have time to share the tale of a walk with God or the life transforming event that has over the years given you the grace to press on. When the finish line looms ahead, be thankful for being able to run this race, be thankful that you chose to be you because that is who God made. We will never in all entirety have all the answers but there is a certainty that cannot be questioned and that is you were made for a purpose. Cancer may be wreaking havoc in this fragile body but I am glad that I ran alongside with you, I am glad for the sacrifices you made but above all I am glad for the love that we shared, the conflicts we had, the disagreements etc because I can say that I lived amongst angels. This for me is not an eulogy and yes every loss requires grieving however I choose not to dwell on the inevitability of saying farewell because we part today to meet again in a place where sickness, stress, loss, sorrow cannot dwell.

As the night star shines brightly, that is what you will always be to me – an angel, a bright star. Like the balance scale, good will always triumph over evil and even if we do not experience the victory physically, we know without an iota of doubt that there is a future that awaits us where treasure that cannot be defiled by man lies in store for us. A place where man’s opinion does not count, where there are no pity parties – that is the ultimate hope that we have, that’s something that no sickness or nightmarish conditions can take from us and as long as we breathe, every breath is an offering of thanksgiving to a Creator whose best cannot be grasped by our feeble minds. And when the breath ceases, we know for sure that the finish line has been breasted because it is not about how far but how well. Today is a day that I am thankful for and despite the inexplicable relapses that have plagued me in recent weeks, I am still standing and obviously not on my own strength (heck I can barely walk 500 feet without stifling the cry of agony) but on The Source that is inexhaustible, for that I am thankful.

“The great miraculous bell of translucent ice is suspended in mid-air. It rings to announce endings and beginnings. And it rings because there is fresh promise and wonder in the skies. Its clear tones resound in the placid silence of the winter day, and echo long into the silver-blue serenity of night. The bell can only be seen at the turning of the year, when the days wind down into nothing, and get ready to march out again. When you hear the bell, you feel a tug at your heart. It is your immortal inspiration.” – Vera Naz

פרידה עד שנפגש שוב בתזמון שלו עצמו

Adios!

Meet Chris….

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Meet Chris

Even as I try to chronicle the significant events that occur in the unceasing challenges of living, especially with dystonia, I still find myself deviating on each post towards something that is particularly pressing and in dire need (hopefully) of one other person besides myself. I mean it really would be something akin to the seer who has built a reputation on her abilities to receive flashes (usually in the oddest of places and times) if every time I posted something, it was entirely about an event that happened to me. That right there is one of the main issues I have with the term ‘blogging’ because with the dynamics of today’s world, quite a significant aspect of our words and actions are a far cry from their intended definition and use however that cannot be a deterrent until I choose to allow it become one.

I literally have already had a few eureka points regarding the absurd difficulties that the simple activity of sleeping has become and though I am yet to fully expound on that subject, it usually features a bit in some of my more recent posts. Now, do I write in order to be understood and accepted? The unequivocal and time-tested answer is NO! because I really am not into, never have for as long as my memories can go back, the whole gamut of being a part of the crowd of pressed bodies on the proverbial ‘band wagon’. Oh, and I still am not of the school of believers that proclaim, ‘if you cannot beat them, then join them!’ because it sort of demystifies the whole point of being yourself in a world that consistently wants to make you someone else. I still maintain that being told ‘you are different!’ is till date one of the best complements an individual can get. However in the light of today’s skewed thinking, abject nonchalance and indifference (craftily concealed with the word; tolerance) I want to emphasize that the difference being referred to is based on the fact that there is just only one of you and that God has lovingly crafted you in His Image and endowed with a unique set of skills, a heart unlike none other, experiences that hone those skills, a personality that is distinct (a mash up of family background, environment and inherited genes) and spiritual gifts.

I remember dashing to the comic-book sections in supermarkets (malls) as a child whenever I accompanied my mum on grocery runs, and it may sound funny but the whole goal of dashing there was to try and read the latest ‘Archie and friends’ or any of the Marvel comics. Was I usually able to finish the entire comic?….uhmmm not quite, because inasmuch as I still detest shopping till date, I usually ran out of time either because having my mother search for me after she was done never had a happy ending or that there simply was not just enough time and I knew better than to ask if it could be included in the shopping cart each time. And as was and still is the way of life, there will always be a newer version, a newer edition, a newer model and so trying to keep pace with the new editions was simply pointless and is still is. In all truth, trying to keep pace with the technological changes is an exercise that could literally drive one insane regardless of how affluent you may be, how brilliant you maybe or how much invention ideas ricochet in your brain and blood/genes. One of the wisest to have ever walked the earth, King Solomon was conclusive on this subject, “Vanity upon vanity, all is vanity” and I do not whole-heartedly put that in based on a whim but based on the actual experiences of a king in the long checkered history of mankind who lacked neither the warmth of feminine companionship or ever faced the bleakness of looking at an empty or rapidly diminishing contents of a bank vault.

I choose to be thankful for every new day regardless of how bad or great the night before was, because I honestly am living my life on the basis of certain fundamental beliefs and so it does me no good if with all the troubles going on, I make the wrong choice of starting each day being grumpy and irritable. I get to suffer the consequences of doing that and not only do I negatively impact myself but I also spread more negativity in a world that is already brimming with so much chaos and unhappiness. Yesterday was one of those days where my resolve to be thankful could actually be embodied. I love driving and so it is not really that great a deal if someone nicely asks me to perform a driving related task – cue in Christopher from Indianapolis! I happened to be around a shopping mall, actually a very large shopping mall and the only interesting place in a new suburb, when I got a text asking me to kindly pick up Christopher from a non-American restaurant and drop him off at his home. I have over the years learned that discernment is a gift because without utilizing that gift, you stand the risk of being a nuisance in the guise of trying to initiate a conversation (even though I usually opt for just being left alone, I now know that concern and care for another can be subtly expressed through a conversation even when I really do not feel like having a conversation).

And so in the course of another good day, I obliged and picked up Christopher and we actually got into a beautiful conversation (not a monologue) – remember, at every point in life, we are either teaching or learning. What really sparked off my interest was the context of the text he sent me, “I am blind which means I will not be able to see your car……” that by itself told a great deal because most times we feign ignorance of reality and believe that we can move on. Acknowledging reality and accepting it as your life are not merely a play of words, they determine whether you react or respond to everyday issues. My interest was not that he was blind or the presence of his cane (I have several canes myself) and being a champion over dystonia, I know that when pity is expressed as a pleasantry either in greeting or introduction, it really irks me because I am simply just living my life and I know that pity parties are not beneficial in anyway to anybody. Of course, I was interested in his story and amusingly when I asked him what his story was (behind every success lies a story), his response was epic, “I am blind!”. So here, kindly permitted by him is his story:

just living my life

At the age of about 18 and on the verge of graduating as a Chemical Engineer from one of the few schools for the exceptionally brilliant in Indiana, he started having headaches and issues with his vision. Those symptoms prompted a routine visit to the hospital where it was discovered that he had a grape/tennis ball sized tumor in his skull and that was literally squishing his brain and therefore prompting all those outward signs – again there is always more to life than meets the eyes.

After the barrage of tests following such an observation, it was inferred that the tumor had started growing when he was 10years old and had continued growing undetected until it had become such a size that it was now literally life- threatening. So of course, he had to undergo a major surgery to get the tumor out but then the damage had already been done – his vision was irreparably compromised. He had to go through the whole 9 yards of disbelief, post-op depression and having to make a choice of either staying down or getting up and learning everything anew – he chose the latter. Due to the major surgery, he missed a year however his younger sister was just a year below him, also studying Chemical Engineering and so they moved in together when he chose not to quit and therefore he had both the essential emotional support and the academic support (note taking, class attendance etc) of his sister. With the added benefits of attending a gifted school, he was able to complete his undergraduate studies and continued right on with his Masters program. As is the case, he had chosen to prove to himself that he would not be a victim however parents would always be parents and therefore he also needed to convince his parents that he was capable and so unknown to his parents, he declined the usual offer of riding with a classmate to a mid-point where his parents would then pick him up. He found his way to the bus station, rode the bus all the way to Indianapolis and took a cab to the house, to the utter surprise of his parents and that effectively alleviated the concerns of his parents. Along the way, he lost his father to cancer, even as he had also decided to push the boundaries further by getting his doctorate.

Unfortunately, his school did not have provisions for running a doctorate program and so he persevered until he was able to get the attention of an alumni who was on the academic staff at Rice University, Houston. Along with her recommendation and his results, he was eventually offered a place in the doctoral program at The Rice University however this was even a much more significant change because it was a completely different city and largely unfamiliar. Nonetheless, he had a distant relative in Houston who he decided to use as an emergency contact but life is nothing without challenges and so because of the move, he had to get documented as being legally blind, obtain the white cane and engage the services of a mobility tutor. With time, he learned how to use the white cane to navigate and move around and so 15years after the major operation to remove the tumor, he sat riding with me, sharing his story with me whilst headed to his own residence where he lives alone, does his laundry and all the other activities related to everyday living. As we swapped stories, he remarked with a wry smile that he does get the same “you are such an inspiration!” but for once (in my case, quite thankfully), we both agreed that all we do as individuals living with disabilities is simply just living our lives as plain and simple as every other person who makes the choice to live does. With a firm handshake, after getting his permission to write about him, I watched him make his way to his home after having an evening out with a friend.

Now this might come across as long winded, however I believe that as you read this, you will completely understand that none of us are born as superheroes but our responses when we get knocked to the ground by the storms of life is what defines us. As I pen these words, I know that in each and everyone of us lies the potential to make our lives count for something other than nought. Simply put and borrowing the words from Chris, all we do is just live our lives and if for some reason, you are inspired by that then I dare challenge you to also live your life and inadvertently become an inspiration to someone else..

Remember that with each new day, we must utter these words, “Now thanks be to God for His indescribable gift [which is. precious beyond words]” and as we face every day with its new challenges, be reminded “No temptation [regardless of its source] has overtaken or enticed you that is not common to human (existence, my words) experience [nor is any temptation unusual or beyond human resistance]; but God is faithful [to His word – He is compassionate and trustworthy], and He will not let you be tempted beyond your ability [to resist], but along with the temptation He [has in the past and is now and] will [always] provide the way out as well, so that you will be able to endure it [without yielding, and will overcome temptation with joy].” To the temptation of seeing the choice to remain a victim of life’s hard knocks as being the better one, the temptation to become a drain to society, the temptation to wallow in self-pity, wrong-doing or selfishness etc, we already have the victory when we choose to acknowledge and accept them. As for me, in addition to walking in these victories, I choose to be thankful if I inspire you whilst remembering that my life is far from being ordinary and not only all about me. We are all inexorably linked one to another, let our lives not be the weak link in the chain of lives that we are part of.

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

Adios

Out on a limb….

Standard

Out on a limb

Every action is preceded by a desire, and without mincing words or trying to fancy paint it, I really wish I could be more determined to more regularly writing. However, there is the inevitable issue of life and its unpredictability, and just having to navigate each day is a victory all by itself. It is another Wednesday; my own personal holiday and suffice me to say that while it is just another day in a week of days, it holds special value to me and along with experiences from the past, I chose long ago to make Wednesday my special day. From the viewpoint of someone who has worked in four continents, I have since realized that acknowledging that our bodies need rest is not a thing of shame because on the flip side, when we fail to acknowledge that, the long mounds of broken bodies littered along the road as we journey through life will definitely remind us that we just might end up as another broken body if we do not apply wisdom and caution.

One of my daily slogans is ‘life is all about moments and it is either we are bold enough to seize them (if we can but recognize them) or we spend the rest of our lives ruing those missed moments.’ Last week, I was at the hospital again for my bi-annual routine check-up and this is really always a big deal because I don’t like hospitals or crowded places at such (it is a proven trigger for a Dystonic episode). Now what makes this particular visit special was that it was to have taken place in the first quarter of the year but when you are confronted by bills of all shapes and sizes, the associated cost of just living a life especially one like mine that is rife with special needs, you need to be very careful about what you bite and chew. In line with the uniqueness of this visit, whenever the reminder popped up on my calendar, it was almost natural to cancel and reschedule whilst believing that the funds for yet another expense would be made available as promised by God. And so, I kept on rescheduling, even when I knew from the warning signs of my body that this was not an event that should be placed in the category of ‘to be done during leisure’. And then there is that niggling voice that keeps on nagging you about the growing changes associated with the journey of one battling dystonia, that I sort of had to belatedly admit to myself that faith is not an easy activity. In the words borrowed from my devotional, it is going out on a limb.

Oh the joy of childhood, when there were no bills to pay, no accounts to balance, no praying for the kids, nigh on zero responsibility save for that of ensuring you came home with an academic result. Not just any result but one that would like a grand jury, justify to my parents that the legacy of good education was properly being bequeathed to me and that I also properly understood that even though as my parents, they were obligated to invest in me but I also had to hold up my own part of the bargain. And so in the summer holidays, during those long trips to my (actually paternally influenced) hometown, there was always that giddy headiness of being free to run around more (just a bit more than was ordinarily allowed). Not that I was allowed to run riot, far from my imagination anyway, but there was just that teeny weeny bit of slack with regards to the daily structured regimen of waking up early, diving straight (still half asleep) into family devotion and then off to the races; daily chores, prepping for school, school itself (and the added but necessary skill of avoiding being bullied by senior students), home (lunch, siesta and homework), preparing the family meal (I was responsible for Wednesdays and Saturdays), more study, night devotion and bedtime (with the regular foray at night into the sitting room to watch the late night movie while everybody was asleep). Childhood was fun and just adds credence to the truth that we should be childlike in our walk with God, not childish but child-like.

Today, I still find it amazing that I have never broken a bone (or maybe I do not remember breaking one) because I still remember how swanky it looked with an arm in a sling or a limb immobilized within a cast. Why the amazement? I was quite the plucky adventurous kid with a daring attitude that almost bordered on insanity – leaping off , balconies and buses just for the fun of it, accepting the dare to roll under dump trucks as they were passing and for my grand finale; almost burning down my high school science laboratory and myself because I was surrounded by all types of acid reagents, no teacher and the curiosity that has killed many cats (after-all Sir Newton, Robert Hooke, Henry Le Chatelier, K.F Braun allowed that curiosity to drive them into becoming science legends). Mine was a childhood that was far from being uneventful, but my dabbling into my memory cauldron is specific: remembering how beautiful life was when the trees bloomed with fruits. I remember learning how to scurry up a tree, adrenaline dousing the pain of the grazes, scratches and the occasional wasp bite just to get out on that limb in order to reach and retrieve the fat juicy mango, guava or Indian almond. The objective was the fruit at the end of that tree limb that was somehow so hidden that attempting to pluck it by hurling stones, twigs et al was an exercise in futility, and regardless of how tiny the limb looked, getting the fruit was all that mattered at that moment in time. Oh, I remember how many times the limb snapped because of my added weight but the stars that swung around in my head after the fall was nothing compared to the fruit in my hand. That was what childhood encompassed; learning how to be street savvy, learning what my interests and dislikes were, learning that each of us is as distinct as the stars in the sky and learning that loyalty, blind trust in God, faith that good will always trounce evil and relationships were values that each person needed to learn in preparation for the life ahead.

Faith is....Doing!

And so today, when it seems as though my responses to life’s challenges are extraordinary, it is just an embellishment of the truth that the best laid plans are those laid by God. I am simply an ordinary bloke in the hands of an extraordinary God, with each day another opportunity to just trust God and get out on that limb. As I got myself ready for my neurologist, I asked (with bated breath) Amanda at the front desk/window, “how much would this consult cost because at the moment, I do not have any insurance?” Her response was matter of factly delivered without even looking up and since the option of paying by check was available, I opted for that, believing that before they cashed the check, I would have the funds ready. I have always maintained that I believe that I’ve got the best neurologist in the world and so as the consult went on, every new change discussed and medication reviewed, I just voiced out how difficult it was getting any form of meaningful medical assistance especially for people living with rare conditions. That was immediately acquiesced by her and then she asked how much I was charged, now that right there is a rarity because most doctors are completely unaware of the fine details of billing. In response to my answer, she said she would go see what could be done because naturally she always wants to know what activities (especially in terms of income)I am engaged in with respect to the symptoms associated with the horrendous fiend known as dystonia. Suffice me to say that as I exited the consulting room and went to get the next appointment date, the bill had been reduced by 45%!!!

Now it is not all about me, however I can only share my own experiences and that moment (the entire consult) was literally me going out on a limb not because I knew I could wheedle some discount but because I am reassured each day that as I long as I remember that the battle’s victory is not defined by the parameters of strength and might, nor is the the race victory defined by the swiftness of feet then I know that His mercies and provisions are there for the asking. Most assuredly, I say that being logical is one of my strengths but when it comes to just waking up each day and living life, I refuse to allow myself be restrained by the limits of logic. As long as I see a need, I am convinced beyond all doubts that there is something I can do; it is not always about the material things you can give rather it is those intangible things that you give when the material is lacking that make the most meaning. Just having the time to listen to someone else going through a storm might just be what is needed to get the bilge pumps turned on and subsequently prevent his vessel from going under. Most times, we fail to admit that we don’t always know the answers, heck we do not even know what the next moment holds for anybody but we can acknowledge that in the effort lies victory and sometimes that victory is right at the end of that limb. All we need do is step out on that limb! You can drive yourself crazy by applying all known theories, calculating the relationship between our body weight (oh remember that also involves getting a scale etc) and the physical traits of the branch but until we stop and put aside the white board, the text books, the calculators, we are just just going to remain at one end engaged in pointless reasoning and failing to realize that we are not even moving. And if we are not moving then how can our steps be guided? If our steps are not guided, then how do we know that we are not just wandering around in tiny circles? Seeing the same things every day and not even aware they are the same things because we are so preoccupied with attempting to solve things using our puny brain and brawn.

Today is another new day, another rare opportunity to make our lives count for something. Staying all swaddled up in the ‘security’ of our comfort zones is not it because remember that the rain falls on both the good and the bad so who says that where you are today and the accompanying luxuries are yours to keep forever? It never ceases to amaze me when I am confronted by ‘experts’ with their fail-safe solutions prattling non-stop and inadvertently gloating also. The neurosurgeon says that Deep Brain Stimulation (DBS) is the answer to dystonia and my follow-up question is have you undergone the procedure? Do you have dystonia? Hold on for just a second and listen because wisdom is not exclusively categorized by how old you are. We do not create, neither do we hold the plans and answers but what we have are a pair of hands and a pair of ears and my self recommendation each day that I am blessed to see is that I ensure that I use what I have been blessed with to bless just one other person. Remember that it is impossible to change the world we live in at once but we can start that change by beginning with ourselves and letting others see that change because whether you choose to admit or not, someone is watching you. Be less of a talker and more of a doer because doers evoke change and everyone needs some respite from a world that has suddenly been besieged by a horde of talkers who have completed murdered their ability to listen. Kindly stop!….and just get out on that limb, that is the very least you owe yourself.

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

Adios!