Tag Archives: Myoclonus

Crystal clear???…

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“You can learn a line from a win and a book from a defeat.” – Paul Brown

It is such a bright nice day today, definitely better than yesterday just because I am alive to witness it and choose to share every moment with as many as are opportuned to realize what a unique privilege it is. I know what it is because every day is a new one for me as I refuse to succumb to the selfish dictates of living with myoclonus. It is not just a new day, it is a new month, a new half to the year and yet again another awesome reason to live as though today were my last. I am truly grateful for how far I have come and suffice me to say that I have learned many books and still intend to make some of those books a reference for the many that come after me and those that I have the honor of their company albeit for a brief space of time.

One of the most niggling issues that still keep me up in constant bewilderment and consternation is how can we live a life of meaning without a crystal clear purpose and I dare to use the term a little bit loosely because clarity is a function of how polished the crystal is. Now what makes for a well polished crystal? A not very savory experience, having to be unearthed from deep within the bowels of the earth, scratched and not an immediate head turner if you sure do not know what you are looking at. And then there comes the painful process of scouring off the dirt and the abrasions of the polishing before you can then use the word crystal. Now for the clarity, it still remains a thing of choice because we can get all caught up in the beauty of the facets and fail to realize that the longer we hold it up to the light, the more beautiful a spectrum we behold. I have two of such crystals – LBJ and JOIV and each waking moment I am amazed at the kaleidoscope of ‘words cannot define’ beauty that I see, and that alone is enough motivation to pick my weary body out of bed and get a go on life.

We passed through Italy a couple of weekends ago and one of the striking things that endear me to the Italians is their seemingly insatiable love and zest for life – their cooking, their wines, their women, their language and their spirit. I remember how spell bound I was when I took that first spoon of risotto and I made a promise that for as long as I am blessed with life each day, there is so much beauty and love to share around and even when I am knocked down, I will look up and get the strength to pick myself up again. The question is not why am I not a champion but why have you chosen not to be? Because life’s stage is as expansive as it can get and regardless of who or where or what you are, there will be your moment on that stage. What you do with the allotted time is definitely up to you but for one who has been through some life changing events, I dare you not to look at the clock but make it a performance that will forever be remembered.

A few weeks ago, I lost one of my high school mates – Victor Igene and I can tell you that he was so full of life that till today many of us are still stunned not just by his demise or the irretrievable loss to his family but the manner with which he passed on and I know that given a brief peek into the future, he sure would have done the same thing again albeit with extra caution because he just wanted to bring some joy into someone else’s life. Now we are devastated at the manner of his demise but the truth is that to the best of my knowledge, he had the right intent and purpose. Whilst we contend with making his demise count in the battle to bring about a so much needed change in that part of the world, the onus lies on the rest of us to realize that we may never see it coming but come it surely will and yes there will be loads of sadness and grief but ultimately the question will be, what value did we have on those that we were privileged to encounter and leave behind. To all who read this, let it be known that Victor was an amazing person and will forever be missed.

“Generally speaking, I simply ASSUME that the best is always happening in my life; whether it is enough money,a comfortable and nurturing place to live, whatever. In this same line of thinking, I see myself protected and guided by a squadron of guardian angels…so I seem to KNOW when it’s time to let go of a situation because it;s not good for me, and when to embark on a path that is RIGHT.” -Chelle Thompson

One thing I know for a fact either asleep or awake is that we all know what is right and what is wrong but the challenge is how many of us are bold and courageous enough to embark on the path that is right and when we are able to initially summon that courage and then put it to work, I say that you are no longer a faceless, nameless entity globally but a champion in that little environment. Just like the crystal, get ready for the abrasions of life and the searing heat that will want to overwhelm just becaue you have identified your purpose and have chose to be different. However, I have seen the end a countless times and it never changes, there will only be one left standing on the battlefield, all bloodied up but victorious and it is gonna be YOU. Now we may choose to hide behind the innumerable facades (work, peers, fame, career, past failures etc) that are so available in life but are you going to make that choice to be different. Dig down into the earth that you are created of and pull out that purpose that is laying and waiting to be a thing of beauty. Do not be fazed by the band wagon that has become so monstrous and seemingly the only thing in today’s society and dare to be you.

You cannot make a niche for yourself on everybody’s bandwagon but remember that life is not a bandwagon, it a stage, it is an opportunity, it is your journey and path. Make those seconds count with every life taking breath that you use because one day it is not going to be there and you will have either prepared yourself for the next phase or be confined to an eternity of regrets. It is now we make our choice, not tomorrow, definitely not yesterday but now and with my father’s voice so clearly ringing in my ears, I hear him repeating these words – do not put off what you can today for tomorrow because today is the PRESENT; a gift. Let that crystal in you shine forth and allow people the experience of seeing the kaleidoscope of colors that will leave a positive impact on their lives forever.

“For me the greatest beauty always lies in the greatest clarity.” – Gotthold Ephraim Lessing

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

 
 

 

ADD’ing or adding……

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“Do not be interested ONLY in your own life, but be interested in the lives of others” – Philippians 2:4 (The Bible)

Without clamoring for global publicity (wish I could…), I took some time out to really ponder on the fate of the over hundred teenage girls roughly abducted from their school, their families and their homes in the name of terrorism in Northern Nigeria….and really take stock of what the priorities in life really are and I have come to the sad conclusion that there are but two choices – choose to live or choose to die and inadvertently these two are inexplicably linked with each other because without life, there can be no death and for there to be life, there has to be death. And regardless of how much sentimental energies we may channel into vociferous debates about choices, we are still and will still be a function of whether we choose to live or die. And permit me to dwell upon the perspective that these phases are not limited to the physical breath we draw each day lest we forget that the physical is but a phase of life and whilst we may argue or sadly ignore this truth, the spiritual supersedes and inevitably influences the physical. There is so much more to life than meets the eyes.

“Only those who have learned the power of sincere and selfless contribution experience life’s deepest joy: true fulfillment” – Tony Robbins. In the brief hiatus I took from sharing on my blog, quite a number have literally ceased to live, translating from one phase to the other but have they ceased to exist in memories? I was reading an article by Rick Warren ‘Give the gift of attention!’ and I realized twas time to get back to doing what I should be doing and whilst sorrow yet ravages the hearts of many, wisdom is truly learned in the house of sorrow. One of the most popular disorders being claimed and labelled is the ADD – Attention Deficit Disorder and my view on this is that as long as the world orbits, man is naturally selfish and exploitative but my question is what have you truly chosen, life or death? So permit me to say that in my own opinion, we thrive on some form of attention be it a disorder or not ( and believe me when I tell you that I know first hand, what a disorder is – I struggle with Myoclonus, remember…) however the issue is not whether we are all victims of this disorder but how we have chosen to make our attention deprivation or lack influence our lives.

It is always a case of responding or reacting because we will always be buffeted by circumstances that want to evoke something in us that we can choose not to display, in response. I choose to make each day count for something because were it to be my last day, I would be glad to say that I have truly gained more than I have lost. For the billions of us that are seeking attention in one form or the other, by force or by subtle manipulation, by violence or peace, by giving or taking – we must all remind ourselves that where we are today will definitely not be where we will be tomorrow and I dare to surmise that it takes wisdom to truly apply ourselves to adding what we can to the lives of the people that we are surrounded by. It has taken me nigh on four decades to thoroughly appreciate this fact, a man wrapped up in himself makes a pretty small package but like the flowers of summer that so willingly give of themselves with each burst of wind, the more we give of ourselves, the more of beauty and sweet fragrance we derive. How much of folly is it when we choose to spend all of our attention on just one individual when there are millions of others that we can share a little interest in? Nobody can know everything about something but we can choose to learn something about everything. We can devote a few minutes each day, not even knowing if it is our last, to showing some interest in someone else and if only we do this, we will practically flip ADD from being a disorder to being a joy because we choose to add some joy into someone else’s life.

In a couple of weekends, fathers are going to be celebrated in the US……for giving, for adding – Father’s day! But wait a second and allow the reason sink in before the inebriation and giddiness – “The one thing about being a parent is the ability to be selfless: To give up the things you want and need for the benefit of someone else” – Danny McBride

Being selfless is a choice we each have to make every waking moment of our brief sojourn on this earth, and the question that will be asked as we are translated from this world is what are we going to be remembered for? What have we added to the lives of those that we were privileged to encounter? Have we being so overwhelmed with our own selves that we have added nothing pleasing and worth holding onto in the lives of others or have we taken a step back and made a choice to add some beauty and joy to another’s life and inevitably ours. Irrespective of what we hide behind; religion, time, culture, tradition, pride, ego, folly – someday, we will stand exposed and truly appraise ourselves for what we did with our lives. It does not have to make the news, but we can break some new ground beginning today and whilst we each struggle with our individual challenges and personal battles, let us remember this day that our lives are each a gift from God but how we choose to live it is our own way of saying thank you for that gift. Remember to add a positive into just one new person today and see where the attention truly lies.

I choose to. 

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Whispering in the shadows….

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A whisper in the dark....

A whisper in the dark….

“Beauty deprived of its proper foils and adjuncts ceases to be enjoyed as beauty, just as light deprived of all shadows ceases to be enjoyed as light” – John Ruskin

I usually try to surmise my life experience of living with Myoclonus with this witty remark of walking through the valley of the shadow of death with just a flickering candle in hand to combat the swirling darkness trying so desperately to overwhelm me. To many, it defies comprehension especially when you juxtapose it with the developed economies where there is stability of power save for the disastrous after effects of a hurricane, blizzard or tornado just like the one witnessed a couple of days back. (One of the survivor’s son who was interviewed thanked God for making his mum quite nosy because a tree crashed down through her trailer in the exact spot where she had been seated some seconds ago……she stood up to go to the window after she saw a sheet of metal hurtling past her window!) However the light from my flickering candle drives me on through these challenging times.
It never ceases to fascinate me how weird the truth usually sounds – much wisdom is learned in the house of sorrows and the best time to number your friends is in the times of adversity. But regardless of how weird and creepy it comes across, there is always the exhilarating freshness of liberation in its wake. Nobody can understand the pain of your situation but people will always be drawn to your ability to smile despite your pain. I was having a conversation with a friend who had chosen to remain on her side of the road after my crossing even though she had largely prepared me for the crossing and it was amusing to hear her describe me as being ‘normal’ these days or for wont of a more appropriate comment ‘dealing with my demons’. Funny really because demons will always exist, why were they created if not to serve their purpose and so whether we choose to admit it from the perspective of a refusal to cross the road with someone or not, we all have to deal with the shadows because the shadows only exist with light.
It is much easier to appreciate the light when you have been in the shadows and whilst some might construe it literally, there are and will always be shadows that surround us and what an ignorant life to live when we deny the existence of these shadows. I have walked in the shadows of isolation, dearth of emotional support et al with the onset of this neurological disorder and it has further revealed and heightened the inadequacies we choose to comfort ourselves with when the shoe seems to be on the other person’s feet but I have learned that we can only give what we have. No natural disaster is going to imbue us with what we consistently choose not to have and so the differentiating factor is not being able to say that someone has finally dealt with their demons and so it is now safe to cross the road but being able to rightly discern the existence of the shadows and yet choose to be that whisper in the gloom urging another towards the light.
I may not have all the expertise in sharing my thoughts however I do what I can and choose to because I know that just by sharing my heart, I might be building a bridge over a chasm in someone’s world. Like the faint whisper of the spring breeze as it caresses all that lies in its path, so we can make a choice to be that positive influence in those fleeting seconds as we pass through the lives of others.
I was invited to a soccer game by my buddy and despite the fact that they lost the game by four points, I itched for the feel of running, kicking the ball, breaking out in sweat from the physical exertions of bodily exercise. I did none of that for obvious reasons but I did lend my stuttering voice to his team encouraging them to do more and guess what; it sucked that they lost but I was glad to have been a voice of encouragement. Now, many of us might have been content with just being a silent spectator but we can choose to do more than that. Make a difference in someone’s moment of dismay and discouragement, be a whisper in the shadows that surround someone else and be assured that in those few moments, you will put your own shadows at bay. Whilst your candlelight may be flickering, be daring enough to light that other candle that has just puttered out and in the space of those moments, bask in the warmth of the smile on that face in front of yours.
I will always be grateful for these challenging times because a whole new path has opened up before me, I have found love and support in seemingly hopeless times. I have been given a second chance to make a demand on life for what I know I deserve, I have shared in the pains and sufferings of many and have been privileged to do something beautiful amidst the ashes of smouldering dreams. I have learned that you can choose not to judge the actions of others because my circumstances have birthed a wider and clearer perspective and words mean nothing until they are translated into actions, no matter how little they are. I have chosen to enjoy the little moments that come my way not because I am unable to sleep but because I realize that it is a blessing being awake when most people are asleep. I choose to prayerfully assist others not because I expect miracles when I am prayed for but I understand better that the best times to give are when every fiber in your being is screaming to withhold even if it is just to alleviate some periods of pain and anguish to yourself.
As I awaken each day, I am thankful because I have a voice and be it a whisper or a full-throat roar of encouragement, I choose every day to set the shadows just a little bit away for myself by being a voice in someone’s shadows. I remind myself every passing day that it a duty to myself to ascertain and apply myself to my purpose for these times and regardless of how much I receive in return, my work is done and will still be.
Remember that life’s sorrows are but a birthing process that truly separates the bold and different from the rest of the pack. No two chances are ever the same so make a choice to make the best of today’s situation.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Second chances…..

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Second Chances….

 

“A lifetime isn’t forever, so take the first chance, don’t wait for the second one! Because sometimes, there aren’t second chances! And if it turns out to be a mistake? So what! This is life! A whole bunch of mistakes! But if you never get a second chance at something you didn’t take a first chance at? That’s true failure.” – C. Joybell C.

I am feeling slightly whimsical as I share this amazing second chance that I am getting because it seems to me more and more each day that to many of us, life is a game of numbers and whilst there might some deep seated conviction in that school of thought, I dare to remind us of the age long story of the seven blind men of Mumbai who after years of walking in blindness from birth were so fascinated by the different tales of the magnificent beast called the elephant. And so the story goes, that they were given their first chance of meeting this creature and like most blind men, their senses of comprehension were to a great extent determined by their sense of feel. The end result was quite compelling because depending on the anatomy of the elephant that they felt, their description was inextricably defined by what they felt. To one, it was a rope; to another it was a wall and yet to another it was a snake, a tree trunk and so on and on. Now I dare to surmise that our own comprehension of life is largely defined by our experiences and so dare to take on new opportunities at defining life for yourself and whilst you may not be entirely wrong, realize that nobody but the Creator has the full picture.

It is the wee hours of another day and I am as usual unable to sleep, tossed down my levetiracetam and my gabapentin and my clonazepam and still sleep eludes me but then it has never been about the things that you cannot do but those things that you can when you can and so instead of me griping about this bout of insomnia, I choose to spend the time doing something I love. I have moved into a different part of the world borne on the tails of medical research, the search for a solution to this neurological disorder and divine purpose and it is actually more like a breath of revitalizing wind because I can now say that what I had in the past compares in no way to what I have now. I was blown away by the unfeigned interest by the consultants at one of the world’s renowned Institute for Rehabilitation and Research and despite the rigorous examination conducted, I had the overwhelming sense of being in the right place at the right time. In the words of my PCP, this is going to be a long and expensive battle but again what victory can best be described as sweetened except one that has been hard fought, for indeed the spoils of victory are best appreciated when the bones are screaming from the fatigue of engagement….so bring it on! “I’m okay today. I’ll be okay tomorrow. And the next day after that I’ll still be okay. But in a year you will see me, I’ll be amazing.“

I am inundated on all sides by the feeble attempts of those who stand close, trying to bring me down but life’s best lessons are learnt in the valleys of adversity for therein you can but learn and truly learn what it means to encourage yourself in The One who defines you. I have met a couple of new people that I already know are going to be an inextricable part of my story and that is what family is about. I have always had etched at the back of my mind that there can exist no vacuum in life and it is a personal choice to set your worries aside and delve deep into the life of one who seemingly seems more burdened than you. For in serving, there really lies leadership. We are surrounded on all sides by individuals who are too scared to be themselves but prefer instead to lurk in the shadows of who they think the world wants them to be and that I know is one battle that you will never win. For in our individuality lies the uniqueness of our paths on earth and these paths must be taken whether they appear as a first chance or a second chance, it is up to you. I just found out that my kid sister is moving into their own apartment and that is a worthy venture and I celebrate with them however truth be told that the golden fleece is usually never where we expected it to be and so the onus is on us to bestir ourselves of lethargy and ascertain our purpose and go after it.

I have been assailed most severely by the intricacies of this journey with Myoclonus and Spino celebral Disease but I made the choice not to be swallowed up by the feelings of isolation and even as the icy flakes and the winds threatened to push me towards wandering around in hopelessness, I made a choice to just stop and look back at where I have come and realize that where I am going is just a matter of getting my bearings right. There has to be for each and every one of us, that point where we consciously cease whatever we are doing and take our bearings in order to get to where we ought to be. Spending vital moments wallowing in resentment and bitterness will definitely take you no further than where you have already found yourself and I say again that it is never too late to begin again. Out with the muddy, sordid experiences of the past because then and only then can the light of God’s leading clearly illuminate our paths and guide us to an end that defies our feeble understanding.

“Some things just couldn’t be protected from storms. Some things simply needed to be broken off…Once old thing were broken off, amazingly beautiful thing could grow in their place.” – Denise Hildreth Jones
We have before us yet another chance to get it right and today is the right time, and just like Steve Martins in the classic movie ‘Leap of Faith’, we just have to trust someone that can be trusted and begin from there because when you are hitched right, you will get to realize that with Him is no variableness or shadow of turning. What He says He will do, He surely will but pause and take a bearing and realize that the chance that awaits you right now, as scary as it may seem is the one that you just have to take and with those few tottering steps, every new day brings in such an infusion of strength that you can only attest that you are better off than wherever you were before. It just has to start with a decision to let go of the past and allow it build up those muscles and resolve that you never knew you had.

“I have become convinced that God thoroughly enjoys fixing and saving things that are broken. That means that no matter how hurt and defeated you feel, no matter how badly you have been damaged, God can repair you. God can give anyone a second chance.” – Melody Carson

Remember that what makes you family is not the blood you share with a few but the loyalty and sense of commitment to our unique paths and purpose with the many others out there who like you have made their commitment to not be put down by whatever life throws at them.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios

 

A glimmer shines through…..

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Seeing the glimmer…

“What is hope but a feeling of optimism, a thought that says things will improve, it won’t always be bleak, there’s a way to rise above the present circumstances. Hope is an internal awareness that you do not have to suffer forever, and that somehow, somewhere there is a remedy for despair that you will come upon if you can only maintain this expectancy in your heart.”- W.W. DYER

What words can best describe how I feel today? Again, sometimes words cannot really suffice but the best I can do is try to share how I feel in the best possible way. It is my birthday today and although I have been awake since 2 a.m however there is nothing that compares to the infusion of life and strength that every day brings and inasmuch as today is kinda special, it is yet another new special day for me. Looking back, I can with more than a wry smile, look at how far I have come through the obstacles and challenges that life has placed in my path….and truly say that if not for God, where would I be? Nothing absolutely compares to the thrill of realizing that I live because I am a creature of purpose and one whose destiny can at best be tampered with but never altered.

I am thrilled by the number of goodwill messages that are coming my way and as every one unique in its own way arrives, I have yet another reason to be thankful because I have long ago realized that life is not measured by the number of birthdays one celebrates but the inexplicable impact we have on the lives that we have been privileged to encounter on our individual journey through life. Amazingly, last night I was in the company of my high school mates after more than two decades and as I stuttered through, keeping up with the updates to our individual lives, I silently acknowledged that I am more than blessed. Regardless of Myoclonus and each new name this neurological disorder spews forth, I know that I have survived through it all for more than just the simple reason that I am a survivor but more importantly that there is yet a purpose to be completed with my days.

Seated right now, in a very comfortable lounge, I prepare to yet undertake another phase in my life so uncannily marked by my birthday. I have lost friends who weren’t and gained those that are and have touched my own life in their own unique way. I reminisce on how it all started and the days when I was all but consumed by the shadows of depression, uncertainty and irreparable loss of those things I erroneously thought were the pillars of my life. Today, I sit and acknowledge that buildings are torn down so that newer and more majestic edifices can be erected and whilst the pain of the demolition puts more than an acrid taste in my mouth, yet I know beyond any shadow of doubt that what is being erected is way more glorious than what was once there. I am grateful for the things I have lost because I would never have gained the things I so cherish. I am grateful for the people I have lost because I realized as my father was always wont to say during my growing up days that ‘the beautiful ones are truly not yet born’. I have been blessed to be the father of an awesome daughter and as each day passes, I realize that nothing might have prepared me for this phase and season which rapidly draws to a close.

i felt the beautiful cold winds of the early spring morning on my face and with each exhilarating breath, I know that I could never ever completely count my blessings least of all, naming them one by one. I have witnessed the blazing death of the phoenix and watched the splendid rebirth of a more majestic creature and whilst I may have so desperately wanted to sit amidst the charred remains of what I felt was so beautiful, yet I was strengthened to hope beyond hope and trust that from the midst of the ashes, something much more splendid and majestic emerges. I have encountered lives that have inspired me and spurred me to heights that I dare not dreamed before. I have watched hope arising as the early morning sun, every glimmer just a taste of the radiant splendor that is just beyond the horizon. I have been stirred to live by faith, and make it my lifestyle, replete in the knowledge that faith and hope are concepts that cannot be taught only experienced and captured by one’s self. Chucking out the feelings of resentment that threatened to pull me down, I stand free and unshackled and whilst my body may be yet weak, still my spirit is renewed daily much more than I could ever have imagined.

I have been privy to the ineptitude of hapless experts and the scorns of people I once held dear. I have struggled more mornings than I wish to remember, every waking moment, an overwhelming battle with the constraints of living with this neurological disorder. Borne more pain than I ever felt I could, accepted with some degree of defiance that I am unable to do the very things that I had so easily done in the past and yet today I stand with such an immense sense of peace and joy that the glimmer out there is mine to bask in and what an awesome experience it will be when I am basking and luxuriating in the fullness of the radiance of a beautiful beginning, a complete restoration of better things than I had previously thought were irretrievably gone. I am a witness to the fact that you are yet to live until you experience what it means to lose so that you can find. You are yet to live until you are confronted with an upheaval of the very things that you felt were yours by right. But now, with a chuckle, I know that you never can have until you are willing to let go of what you think you have. Loving without being assured that you would be loved back, giving even when your very being screams out in protest and simply just keeping your eyes on the hills where the vast and inexhaustible reserves of strength are yours to just tap into.

It is a beautiful year for me, and I choose to persist doggedly and unwavering in my walk and call, knowing that I am not just a pawn to be sacrificed on the board of life but the son of the King whose thoughts for me are simply beyond my ability to grasp or comprehend. Life is a journey where we are privileged to meet and part, and yet what wisdom compares to the assurance that in those few seconds, you have bettered the life of one just like you albeit on his own path. As I mark today with whimsical feelings, I know that the day is just dawning and what an awesome one it will be, because I choose to believe that no matter how long the night is, surely the day comes and with it such an immense measure of joy.

My chauffeur beckons to me, and so I say to all of you who have been such an important part of my still unfolding story, the best is yet to come and so I cast away all thoughts that say the contrary. Wishing you all many more years of fulfilling your own purpose.

Remember that what makes you family is not the blood you share with a few but the loyalty and sense of commitment to our unique paths and purpose with the many others out there who like you have made their commitment to not be put down by whatever life throws at them.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Sowing seeds…..

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Blessed to bless

Blessed to bless

Awakening from my restless brainiac world where the best two hours are like being thrust into a Ferris wheel, everything going around in such a blur that you barely have enough time to comport yourself least off all scream in sheer terror…..but that’s what insomnia feels like. Being exhausted and yet wary of shutting your eyes without ingesting that tiny white pill that gives you a blank world where nothing is, just a feeling of nothingness……my eyes snap open and I realise it’s barely an hour or two ago and yet I’m mentally fatigued. Each subconscious thought methodically pulled apart and a maelstrom of thoughts are all ricochetting in my weary brain. Where’s the rest in sleep, I ask? But wait a minute, if I spend all my time chasing the elusive rest, what happens to my purpose on earth?

I did a mite of shopping a couple of days back and am still recuperating whilst striving to admonish myself not to embark on such a seemingly harmless task however that’s what my body has become. An irreconcilable ongoing exercise between my outsides and insides and it seems to be a losing battle but guess what, the opera ain’t over till the champ says his lines and I’m not done with writing my lines. It’s amazing how much life seems clearer when you are down in the rut, grinding it out daily with myoclonus. It’s also amusing when I come across the experts who are clearly flummoxed and yet are unable to admit that simple truth to themselves. I can because I do battle each moment with a neurological disorder that takes pleasure in persistently striving to make you who you sure aren’t however it’s a game of wits. Persist all you may, the call is mine to make – it’s my life not yours.

I have got this lovely DAB/iPod digital radio and bedside clock and each time my eyes are drawn to those fluorescent green digits, I assure myself that there’s more than just bemoaning my present circumstances. I recollect with astonishing clarity the fun I had working with paper machè, gathering all the old and discarded dailies (for many, just some more clutter that needs to be trashed), letting it soak up in a tub of water till it’s all mushy and then mixing it with yucky paper glue. The smell to many, distasteful it might be but for me, it’s another opportunity to put together that messy unwanted mixture into something of a sculpture that when it’s all dried up would attract more than just glances but back in the days, my sculpture would occupy a place of pride and attract those who failed to see the beauty in some old used newspapers.

Now I admit my fingers may no longer be as nimble as they were back then neither do I have the ability to bend and retrieve those discarded dailies, least of all lug them home and get working but I acknowledge that there’s something of beauty in everything around us. The question is how many of us choose to remain on the level of being too busy chasing nothing, to pause and admire the beauty that lies all around us. Many of us may be content with side-stepping the ‘brokenness and discarded’ amongst us whilst we rush away snuggled in our warm overcoats but realise that the fulfilled life is not only one that takes into perspective what they see but willfully determines to make just that little difference in their world. I can luxuriate in the fact that I may not be able to make a paper mâché sculpture anymore but I can encourage those who still can, but do not realise they can, fashion a thing of beauty from their situations of bleakness as they are apt to be reminded almost daily.

What makes us individuals isn’t just the obvious fact that we are acclaimed to be top of the mammal/primate chain but I’ve seen animals go out of their way to assist an unrelated specie. I’ve been privy to witness love in deeds by those far lesser than us on the evolution ladder. A sparrow with a broken wing being nursed by a raccoon, I’ve witnessed abandoned pups being taken under the motherly care of a lioness and so if we truly are top of the chain, what acts of love define our everyday actions. ‘Saying a prayer’ via comment on social media for an ailing neighbor, friend or family when it cost you nothing to drive out there or send out a card or even place a call. Waiting for the call from that chap who obviously needs a better pair of shoes to warm his feet during the winter, mind you, he can barely afford to place that call. Waiting for your neighbour who’s past her prime to call out to you to please check on her and bring some joy to her life even if it is to help with her groceries. “Love sought and given is good but given unsought is better” – William Shakespeare. The list of little acts of kindness is endless, the question is what if that call never comes, are you absolved on the grounds of ignorance?

My hands hurt and I have to give this body some rest for there is yet a journey to continue on and so I cherish the little seeds of kindness i choose to place on my path because it sure is gonna look rosier to the next person that journeys behind me. That’s the choice I make every conscious moment with each day I yet draw breath, to let things go that truly don’t matter that I might devote myself as much as my body can take, to the things that truly matter.

Remember that giving is truly receiving, what’s that you’ve got in your hands – God wants to use it if you are willing to lose it.

פרידה עד שנפגש שוב בתזמון שלו עצמו

Adios!

Just beyond the Mile……

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http://news.bbc.co.uk/2/shared/spl/hi/pop_ups/05/health_beyond_boundaries/html/5.stm

“As soon as man does not take his existence for granted but beholds it as something unfathomably mysterious, thought begins.” – Albert Schweitzer

It is the wee hours of the last day of another year, precisely 0311 hours and I am unable to or do not want to go back to the turmoil of a restless sleep, aching spine and a catalogue of other undesirables however I can choose to and indeed have, to make the seconds count because time is one factor that we unfortunately have no control over and so the best time to do anything useful or productive is NOW. What better time than the last day of a wonderful year replete with its own shares of highs and lows, moments of sheer ecstasy and regrets, moments of such exquisite delight and almost unending agony, moments of hope, love and contentment and those of despair, isolation and despondency. For me, it has been such an eventful year that I can’t wait to let go so as to let in another because it is in giving that we receive. “Oh how blessed is he that scattereth even when there seems to be nothing to scatter for when you cast your bread upon the waters, you sure will find it after many days provided you do it right”- The Manual

Personally speaking, it has been yet another awesome journey and I can tell you that the pickings of the harvest are usually best towards the end of the harvest period and for me, 2013 is ending on a superlatively high note ; Like the tide that comes in right after the debris of the previous night’s debauchery, washing away all the debris and making it right as new or better still the ultimate sacrifice paid for us when we least deserved it, giving us yet another shot at life and not just any shot but this time from the winning team’s dugout. We can count on the fact that every hit is way out of the park, that is what our expected end is when we only but acknowledge what a choice we have to make. One that stays true regardless of what the present circumstances may otherwise be whispering in our ears or even clogging our senses that we are almost on the verge of accepting it as our lot in life. Hang in there for just a second and hear this truth “many were the steps taken in doubt, that saw their shapeless ends in no time. Those who travail in faith today will triumph in joy tomorrow. Let faith lead the way” – Israelmore Ayivor. Now the many variations of the word ‘faith’ has besieged many with exactly the opposite and so we are in a roller coaster of a ride trying desperately to blend in with the seemingly obvious excitement all around us and yet grapple with a deep-seated conviction that there is more to our existence than being part of a huge noisy crowd of ‘thrill seekers’. How many of us are bold enough to dare to be ourselves in such a convoluted world, where the norm is the wrong and doing the right makes you a pariah.

i recently regaled my wonderful host with the timeless classic of the childhood story of Sleeping beauty but permit me to just stretch our imaginations much more than we could as kids. In a bid to give her what her parents thought was best for her, they unwittingly bestowed her with such an impending doom (many of today’s parents are like that! all too caught up in wanting to give our kids what we never had as kids that we irretrievably fail to also remember to give then what we did have……as kids). However the tale goes on holding us breathless as kids, as the parents sought to stave off the impending doom but alas life is unfair – to gain is to lose, to bless is to give, to know happiness sometimes is in the house of sorrows but nonetheless we can only demand of life what we think we deserve and not just what we deserve but be assured that we deserve it, not on account of what we have put in but solely on account of who is steering our ship. Back to the classic tale, as usual despite our best efforts at trying to steer life, we are not only ill-prepared to do so but lack the wisdom to. On her 18th birthday, her ‘fate’ caught up with her and there was a complete rewriting of the script – a sleep so profound that the very kingdom was almost a myth. Enshrouded by massive thorns and bristles, cobwebs as thick as the wool spurn off the loom, the story goes on until it ends with the Knight on his shining white steed having heard of the tale, came to terms with his purpose which he had been searching for ……. We all know the story!

Now, as adults, we are not to be childish but child-like in our dealings so let’s re-examine this beautiful tale and see yet again if we can unravel some nuggets to help us on our journey through life. Questions – why was it just that knight that was able to rouse her with the kiss? Would there not have been many others before him? I dare say that these answers hold for us the very stuff that will make us extend ourselves just a teeny-weeny bit and venture beyond that milestone that has hitherto held us back all this while. We are all creatures of purpose and for as long as it takes, we got to keep searching until we not only realise our purpose but assiduously set about at achieving it. I strongly opine that there were many before that knight but what made him the hero of the tale – he heard the story, acknowledged his purpose, set about searching and taking complete cognizance of his surroundings, he made his way through the thorns and bristles, arrived at her bedchamber and gave her a kiss that was so different from all the others that it stirred up something within her and rekindled her hope and zest for life. What a tale! But it sure is more than just a childhood ‘read me to sleep dad’ kind of tale but one filled with simple truths that we have tended to overlook and have left it in the childhood story book section. Purpose, Perseverance against all odds and an everyday action yet so different that it provoked such profound results.

Now, I am a romantic at heart and Myoclonus cannot take that away from me because I believe that within each and everyone if us lies a set of skills particularly honed for our purpose on earth but first of all we must search for our purpose, acknowledge it and doggedly go about attaining it. Being different is another, where many have failed before us, we can choose to succeed if we choose to be different – remember that the greatest battle we all have to fight is being ourselves in a world that consistently wants to make us someone else. The question is are you satisfied living your life as someone other than you or you are brave enough to be yourself, I dare reiterate that the choice is yours to make but whilst we grapple with this all familiar concept, let us consider the point we find ourselves.

Fact 1 – You can’t have made it this far on your own and therefore Someone is calling the shots. Who is calling the shots in your life and what is your own assessment of where you are today? Completely lost sight of hope? I dare say it is better late than never, you can get your train back online.

Fact 2 – You know the story but have allowed yourself to be overwhelmed by the bandwagon effect that you may have almost lost sight of the tale and your purpose in life. I dare say that ‘he is no fool who gives up what he cannot keep just to enjoy the exquisite pleasure of obtaining that which you dare not afford to lose’. Folly in itself is not destructive but how long you allow yourself remain in it is.

Fact 3 – You have gotten to your milestone, battered and bruised, overwhelmed by the frailties of our human body and yet there remains just that simple gesture that many might have made before you with no results. That therein is summoning all that is within you cos it sure is there to venture beyond that milestone and make yours different – that is what makes the results differ for each one of us. We all have one shot at life, are we going to choose to just be statistics or be the real thing – the choice is yours to make.

I have seen seasons that threatened to overwhelm me but the choice to succumb or rise above will always be mine and I will always choose the latter because ‘in this ladder of lives we are given to climb, each life counts for only a second of time. The only one thing to do in that brief little space is to make the world glad that we ran the race’ – E.W Wilcox. I may not know how badly a hand life has dealt you, I know mine and I have chosen despite all odds to make the world glad I ran this race regardless of the inexplicable bouts of incessant pains, insomnia, tremors, huge medical bills and an unpredictable bouquet of medical oddities. I have also had reason daily to be thankful for every life that I have encountered during this journey because without you all, I wouldn’t be who I am today and for that I applaud you regardless of your roles.

My year-end message to as many as read this is, in two words – BE DIFFERENT! There’s just one of you so why make a hash of that singular honour. Love as many as you can, get hurt in the process but stay focused because life remembers not those who lay fallen and trampled in their trenches but those who have pulled themselves up and persevered in the face of adversity. My word to you is this, go for your dentals and be prepared to walk into the new year with a grin so wide that life itself will stop and recognise you. Reach out to just that one person who is suffering beside you and just do something to make him feel better and be glad he met you and above all else realise that you did not make it on your own this far and even when the clouds loomed dark above you, He still was there beside you and my advise is give Him free reign in the new year and be amazed at how puny those milestones now seem. You are a diamond in the sky, let rip your luster and brighten up the world whilst you can.

Remember that the race is not to the swift, neither is the battle to the strong but time and chance happens to us all. Choose to make that one chance count for your generation and generations to come. Have an awesome new year even as you venture beyond the mile. I sure do love you!!!

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Keeping it real…..

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I hate travelling but again that is a necessary evil. A complete turn around from my pre-myoclonus era where travelling was so much fun and one of my hobbies. Anyway, life is not fair because life in itself has been tarnished and tainted and still is and so just being yourself is one of the most difficult challenges you can ever dare to undertake. I recall the tale of the tale of the simple lady who was invited for lunch at the Queen’s request on account of her widespread gestures of concern for everyone she ever came across, and when she was interviewed on what set of manners she intended to display during the courtesy lunch, her answer has always been one of my fundamental principles “I have only got one set of manners and that is who I am“…..impressively profound. In the course of my travels, I have come to acknowledge that life is much more than an endless pursuit of fame and wealth and recognition, a concept I wholeheartedly abhor but one that appeals to majority of individuals – ‘it is all about the green backs!’.

Being cast into the physically challenged category has been an eye opener in many regards and a completely new field of learning for me. I have come to appreciate that being able to do anything at all is something worth being proud of, so pause today, take stock of your abilities (regardless of how little they may seem) and say a word of thanks to Him that has blessed you. I recollect the many times I have been forced to take a large dose of patience pills just because insensitivity abounds and is largely becoming a second skin to many individuals, waiting on board many an aircraft whilst all passengers disembark just because I have special needs and being subjected to hurtful and derisive looks and remarks because we have largely refused to be human in our everyday living. And now, I know that wherever I meet any individual striving with some form of physical challenge, I choose to pause and salute their bravery because being yourself without any form of inhibitions is difficult enough without adding on some form of physical challenge.

Each new day is filled with its own share of troubles but remember that even when life throws the kitchen sink at you and knocks you out, wake up with the courage to still be yourself but duck next time where you can. “Sometimes it is just easier to tell a stranger than to tell the people you are close to. The freedom of speech is my liberation from solitude and if you should take that negatively or with annoyance then that’s on you to look the other way” – Nicole Hill. I have come to realize that so many of us are absolutely terrified of even attempting to discover who we really are and so my question is if you are scared to define or know who you are then what business do you have at attempting every other thing because life consists of not just knowing who you are but being bold enough to stay true to who you are. I may not have been born a quadriplegic but even if I were, that is not who I am. People ask me a lot if I was born this way, and amidst my answer lies this truth – I was born for a purpose and I dare anything to make me believe otherwise. Behind my smile, lies a whole lot of pain and an unappealing  bouquet of other discomforts but I choose to still be myself irrespective of how unfair life may seem presently.

Today marks a new beginning, and I walk in that knowledge knowing that even in chaos, God can work out order and harmony. Vacillating between many personas just goes to show how shallow your understanding of life is because as long as you fail to accept yourself for who you were made to be then yours will just be a charade for people with understanding to learn from. Each time the dime drops, I dare to bend over and pick it up even if it means exposing my backside for life to kick me over but guess what, you still have the dime in your hands so pick yourself up and do something with what you have got in your hand. Desire to dream but do something with what you have now and stay true to who you are. Many extraordinary individuals have opted to jettison their right to choose to be themselves for the sake of a life of pretense and despair in order to maintain a facade that hides sheer cowardice and stagnancy. Always realize that ‘No matter what you do in life, your words, your actions, your looks, your thoughts, you are never going to please everyone’ – Nishan P. so what is the point in embarking on a fruitless venture when you have a unique life ahead of you?

I am constantly stunned by the sheer audacity of individuals who are hell-bent on trying to be what the world wants them to be – by choice of career, relationship etc, many are actually skilled at blaming others for daring them to be themselves, hurling and trading insults every time you scratch their fake veneer. – because if only they could channel just a mite of that energy into discovering who they are then maybe, just maybe we will find ourselves being more loving, more accommodating and more sensitive to the lives all around us. For every time, we choose to make our lives more meaningful by doing those little ‘grand’ gestures to those around us, what a doorway of anticipation and self-development opens up for us. I will never know what it means to be perfect just yet but what I know is that I can be myself despite my aspiration for perfection someday and choose to make my own life an example for as many as I come across. That is my watchword even when the days seem so lonely and my journey unending, I will stay true to who I am.

I have to live with myself and so 
I want to be fit for myself to know.
I want to be able as days go by,
always to look myself straight in the eye;
I don’t want to stand with the setting sun 
and hate myself for the things I have done.
I don’t want to keep on a closet shelf 
a lot of secrets about myself 
and fool myself as I come and go 
into thinking no one else will ever know 
the kind of person I really am, 
I don’t want to dress up myself in sham.
I want to go out with my head erect 
I want to deserve all men’s respect;
but here in the struggle for fame and wealth 
I want to be able to like myself. 
I don’t want to look at myself and know that 
I am bluster and bluff and empty show.
I never can hide myself from me;
I see what others may never see;
I know what others may never know, 
I never can fool myself and so, 
whatever happens I want to be 
self-respecting and conscience free.

These beautiful words from Edgar Albert Guest, painstakingly learnt and memorized in High school are forever etched in my memory. Make today count because that is all we each have got, and be mindful that when you do, you can cherish them tomorrow.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

 

The Way of the Orchid……

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Permit me to say that I have not been as available here as I am wont, not by personal choice but by the weight of events that have suddenly all come together all at once, not excluding the bad bout of flu that I had to wrestle through and overcome. I mean, bring it on! Not to sound blase in my remarks, I say that it has indeed been a wonderful week as usual, characterized by the unpredictability of Myoclonus, I have had my share of good and bad days. Barely had an hour’s sleep in 72 hours and entertained the gawking stares of the unenlightened, the passing on of friends and ‘friends’ and the beauty of meeting unique individuals who in their own little way within those few moments, injected some extra zest to the beauty of my unique personal challenges.

I have learnt to “Be genuinely interested in everyone you meet and everyone you meet will be genuinely interested in you” – R. Ogunlaru and I give special mention to Siham (insha Allah! we’ll meet again), Mary – my own distinct Winnie with her boisterous desire to be by my side as much as possible and my guardian angel who despite the sutures from the operation on her thumb was so reluctant to let me out of her sight. When you give, you receive much more than you have given but for each of you – know that my life would be incomplete without you. And with every passing day that I am blessed to live, I commit to passing on every good deed I receive and burying the bad because hey! the world is already sorrowful enough so why choose to add more when all that is really needed is just that little gesture of kindness to just that one person. Despite the crunching setbacks of huge medical bills, I still choose to enjoy the times I have with my various therapists (Igor, Vas and Richie) because I am convinced that there is always a choice to make and I thank you all for making every new day just a bit more bearable.

Phew! I guess that is what happens when you keep so much bottled up inside that instead of a calculated trickle, there is a gush of all that you had wanted to say but have been unable to.

I love orchids! I recall back in the days, how quickly they could transform an environment both with its fragrance and the beauty of its floral arrangement. And today I still count orchids as one of my favorite flowers, I can still recall plucking off many a flower just to enjoy the sweet nectar contained within.  And then I grew up,……… and fell in love with biology. Now not only did I find a subject that was fun but this was one that allowed me to improve on my drawing (lots of beautiful pictures in the textbooks) but it suddenly explained more of the mysteries that I had come to fruitlessly ponder upon.  Learning about life and the whys have always been a thing for me but I drew the line at going into medicine (it just never appealed to me), now although because of my preferred choice of career, I had to drop biology but it still remains a subject of beauty and allure. I learnt about flowers and got to know more about my favorite orchids.

The orchid can be found in almost every continent but one of the amazing things about is this – because of an absence of an endosperm (sorry this is no biology class), in the course of pollination, it has to enter into a funny relationship with a type of fungi (gross!!!) and guess what? these fungi provide the necessary nutrients needed to germinate so that all species of orchids are reliant upon fungi to complete their life-cycles. Now the irony of this concise biology lesson is to draw an analogy that most of us have to face as individuals – were the orchid to be given an option, I am definite that getting involved with fungi would be the least of her choices however we are all subjects of creation and each of us has a distinct path to walk either by acceptance and choice or by compulsion and a higher authority. As I contemplate the past two years struggling with Myoclonus Dystonia, I realize that certain events in our lives are there to ensure that we walk our distinct paths and fulfill our unique purposes. Now, nobody in his or her right senses would opt for some pain or discomfort but what happens when we are thrust into a maelstrom of events that seem to have the singular objective of crippling us, shaking us and turning our little ideal worlds the wrong way up? Do we throw up our hands and let go of the towel or simply roll over and play possum?

The answer is a choice to make however life has a weird way of bringing out the best of us when we encounter some degree of discomfort, let us recall that we are creations of pleasure for a God who truly loves like nobody ever can.  Would it therefore be right to rile and wave our puny fists in His face when we are borne upon the winds, isolated and alone, tossed to and fro by the waves of life, to be deposited in a strange environment just for the sake of being reborn and reformed? For every orchid flower you see, pause and admire it but remember that there is the process behind it that has resulted in it becoming the epitome of beauty that it is. When we, like seeds are in the dark ground, torn away from the shelter and comfort of the world we were born into or we painstakingly created, devoid of companionship (like we were used to) instead of curling up into a ball and dying – let us appreciate that within and around us a chain of events are already set in motion to sustain us through those dark and dreary moments. The nutrients we need to stay alive are inexhaustible and inexplicably geared towards that purpose, the darkness of those early moments are soon to be pierced though by the warm ray of hope and light. We are seemingly unable to fend off the predators that bear fiercely down upon us, through the myriad of pains, twisted joints, trembling muscles, a neurological system that seems to have gone haywire and it sure seems that we have been wrongly created to suffer for no just course. And yet, we are not wholly consumed, for within our tired bodies and palpitating hearts still flickers life and with life, a hope to be chosen.

It may seem like we are all alone but there is never any vacuum in life if only we can choose to drag our eyes and attention from the claustrophobic dankness around us and acknowledge that as long as we yet live, we can choose to hope and dream because just like the little shoot that breaks through the ground, someday it will all be over and then we can truly realize that not only does death exist in life but more importantly life exists in death. As we die to the many comforts and perks that we had gotten used to, let us also realize that birthing and character development is a process and through the pangs of pain and discomfort, insomnia and the jerks, loss of movement in our limbs and a lack of control over our system – a process is being played out and the end is as certain as the sun rise every day. We are not alone through all this, He is working all things together for our good as long as we are totally reliant on Him. Not the ‘friends’ who have walked away from you in derision or the siblings who have prioritized every other thing above you, not the ones who love only in words and cannot find the actions to back it with, not the birds of carrion who circle in futility above you or the hyenas prowling around – definitely not these, but above and beyond them all is the fact that we are creatures of destiny and our destiny and purpose are charted towards good course as long as you give in totally to the One in charge.

There is nothing wrong with the world and its occupants, filled it may seem with a multitude of uncaring souls, just realize that “All true friendliness begins with fire and food and drink and the recognition of rain or frost. …Each human soul has in a sense to enact for itself the gigantic humility of the Incarnation. Every man must descend into the flesh to meet mankind.” – G.K Chesterton.  We are still part of this world and we can make that difference if we choose to, trusting and completely reliant on the truth that we are no freaks of nature but unique beings created and watched over with love by Him. And as we approach each day, unsure of what it may bring, let us also realize that we can make a difference if we choose to and completely astound the multitude of nonchalant and indifferent witnesses that are eagerly gathered around us because we can and because we understand;  A higher calling, A setting apart, A distinct purpose and mission……

“Live each day as if it’s your last’, that was the conventional advice, but really, who had the energy for that? What if it rained or you felt a bit glandy? It just wasn’t practical. Better by far to simply try and be good and courageous and bold and to make a difference. Not change the world exactly, but the bit around you. Go out there with your passion and your talent and skill and work hard at…something. Change lives through art maybe. Cherish your friends, stay true to your principles, live passionately and fully and well. Experience new things. Love and be loved, if you ever get the chance.” – D. Nicholls.  Arguably, many might ask where the chances are but do well to remember that we do not control the chances but we do control our choices and so endeavor to make those choices count. Live in the knowledge of the truth that life consists of moments and whilst we cannot recreate past moments or create future moments, we can make use of this moment so make the now count and then you can be sure to cherish it even when it is long gone and past.

Remember this “I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” –  J.H ‘Groucho’ Marx. “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble. Matthew 6:34”
lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!