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!

Out on a limb….

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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!

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!

The miracle of brokenness……

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Broken but not alone!

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

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

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

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

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

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

 

When the words dry up….

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

A Dry Fountain

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

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

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

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

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

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

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

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

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Behind the walls….

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

Behind the wall

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

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

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

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

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

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

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

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

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

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

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Hoping; truth and Realism……..

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hope

Hope unconquerable.

Phew! Without so much of a fuss on the part of anyone, we are already in the third month of the year 2015. Surprisingly the number 3, across several divides and discourse, has some bit of symbolism to it and for me, it is many things – Divine sovereignty, my birth month, my position in the order of siblings, and for a while it was my favorite number. Why? I just loved it or better put, I chose to love it however that would be the subject of another write up hopefully. Borrowing the thoughts of Vera Nazarian; “Love is made up of three unconditional properties in equal measure:
1. Acceptance
2. Understanding
3. Appreciation
Remove any one of the three and the triangle falls apart. Which, by the way, is something highly inadvisable. Think about it — do you really want to live in a world of only two dimensions? So, for the love of a triangle, please keep love whole.” 

It has been over 40 days since I put thoughts to word, my sincere apologies to those I have left hanging. The stark truth is we are each made to complement one another and how dreadful it would be if I did not hope and believe that someone somewhere was taking the time to read my thoughts. To you, I say a gracious thank you and pray that your aspirations would dwarf your immediate limitations, if any exist because I speak from the perspective of one who has seen his immediate limitations grow in leaps and bounds. In admitting that, does that deprive me of hope or rob me of the knowledge of truth? Definitely not, I know that I have been created for the long haul and properly equipped at such and perchance when those dark days loom, I also have realized that the resources from which I draw on daily are not and can never be measured by man. I have had everything taken away from me, not by choice in whatever dimension, but I stand today, so much better than I have ever been.

A couple of Sundays ago, I was blessed to be ministered to by the One World Children’s Choir and even as I looked upon the huge smiles and the pure love emanating from their actions – something dark and sinister struggled to shake me off my perch. With a surge of emotions, I recalled how easy it is to feel alone and hopeless but I quickly reminded myself with the truth that there can be no life without hope. How else can anyone begin to explain the chain of events that have uniquely characterized our individual paths through life? What are the indices that reveal the superiority of your life when compared to the next face beside you? As each of the kids went through the routines, obviously practiced but yet seemingly original, I realized that the life we live can and will only be evaluated by the choices we make.

Unknowingly, there is a growing curiosity about the difference between truth and fact. Some school of thought say that truth is subjective while fact is not, others disagree on the grounds that they mean the same thing. I could go on and on however I just want to share my thoughts especially for one who has witnessed both extremes in almost every aspect of life. I opine that both are different – each differentiated by its reference base. For me, truth is simply truth; it is what the Sovereign God says and be you from the North pole or the South pole, there is no higher authority than God. For me, the test is what can you appropriately compare truth with. What people referred to as facts centuries ago have either been slightly amended or completely thrashed however I choose to rely on truth as the only virtue that has the inherent potential and capacity of completely liberating you. Is the truth real? Yes it is. Is it tangible? Now that is bound to be contextual…..

I was privileged to celebrate a new year a couple of days ago, and amidst the outpouring of well wishes, prayers, gifts etc I reminded myself that I could never have made it this far without hope in the truth despite the reality of the situation. it is that hope that births the dreams and aspirations that guide me through the turbulent waters of life. And just like the blinking light atop the light tower, I am guided inexorably by what I have chosen to accept and believe. Regardless of the incessantly changing tides of life, this truth stands out – I am who God says I am and whether I choose to believe it or not, the propensity for hurt is overwhelmingly stacked on the latter. We are blessed, whether we believe it or not yet again, for the sole purpose of blessing others and how ironic would it be for anybody to say that there is nothing each day to be thankful for. This truth trounces every religion and thought process. The follow up question then would be, if we admit that there is something to be thankful for each day then why can we not share that gratitude with someone else. Give and take, Yin and Yang, Life and Death – to everything there is a beginning and an end, an action and reaction, a positive and negative…..

Without us beginning, there would be no end, and then throw in a little high school physics and we might just get stuck in the inevitability of never being able to garner all knowledge. What we do with the little that we have or are given is what determines whether the subject of hope is a reality in itself. We can choose to make our lives as real as possible by giving hope to someone else, because we are, simply because someone gave. We receive only because someone gave. Now I have since acknowledged that riches are not synonymous with happiness, real contentment and joy can only be achieved when we fulfill. Fulfill what? Fulfill that for which you were made, I tell myself every moment that for goodness, kindness etc, it is better late than never. To forgive is divine, but it is humanly to err. To begin again always seems more difficult but do a 360 degree evaluation and you will agree that there must always be a start. For me, each new day is an opportunity to be the hope that someone else so desperately craves and for as long as there is breath in this fragile body, I choose to believe that “When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too.” – Paulo Coelho

I must begin with myself each new day and whether twilight catches me still unfinished, I know that tomorrow will begin with me being better than where I was yesterday.

Remember, the quality of whatever we aspire for or dream of can only be made manifest in the quality of what we give others. We are, because someone gave and regardless of how despondent the circumstances are demanding of you – you still get to choose. Make it count!

עד שנפגש שוב , אני נפרדתי ממךלשלוםוטוב ביותר שאתה לבד ראוי .

Adios!