….A Night’s Chronicle

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“Round and round the garden like a teddy bear…” is one of those childhood rhymes that seemingly defy time. Passed on from generation to generation, it epitomises the innocence of childhood and the desire to enjoy life as we live it. However, as most have found out, life is less of a merry go round or a Ferris wheel but more of a journey with the beginnings not made by personal choice. Life is a journey that begins with child birth and culminates in the transition of life through death. This is made clearer each day by the experiences we encounter, the choices we make and of course the unpredictability of life – each stretch of life followed by a bend and more often than not, what comes at us on the bend is what usually defines who we are and who we get to be.

I have in recent times, being given the opportunity to talk about my struggles with dystonia and myoclonus, the unique but humbling privilege of creating awareness of the neurological disorder termed dystonia. As is often the case, there are always the visible signs on faces as they struggle to come to terms with the words that I speak and so I want to write just a little bit of the battles I face on a daily basis. This is no nursery rhyme, I really wish it was, because most rhymes usually have happy endings based on the fleeting happy nature of most childhood stories.

The uniqueness of the human brain will never be completely understood but somehow I acknowledge that like a finely tuned automobile engine, when something is awry upstairs then seeking fun at a circus is definitely not the fun activity for me. Longing for the usually deserved rest for the human body, my brain is still actively firing away on all fronts; the highway of my nervous system is in a very sensitive state and so I try several supine positions to discover the least uncomfortable. Oh and yes, I definitely have to trick my brain into focusing on something so as to allow it relinquish its hold on my aching body. With my eyes shut, I still feel thoughts bouncing around my head like the hamster on its wheel. The pills kick in but the bad days are dreadful because my brain is just like the race car that has pulled into the pit stop, engine revving on all cylinders.

‘Send in the fire engines, this engine is about to blow a gasket or two…’ is literally apt because even while I try to rest, my brain is literally having a fun day. But alas my brain cannot have a fun day all by itself and so with little activity and response from a body trying to unwind, it becomes that race car with the brakes engaged and the gas pedal to the metal. Hallucinations are not that scary in this context, but somehow just by sheer persistence, I am awakened by the ‘fun’ my brain is intent on having. I definitely need more pit stops but in all honesty, it is a game that I am getting tired of. As the new day is birthed, it just seems like I have been chosen to always chaperone her and when friends comment on my ‘stamina’ and ‘limitless energy’, I choose to take it as a complement because this ship is not going down……not on the watch of Him who I solely depend on

Snatches of sleep when I can are actually victories and though they come in notches of two or three hours, I welcome them. There is a purpose to this life and whilst the vehicle I am in is slowly being worn out, I choose to remind myself that “it is better to wear out than to rust out.” Pills are not the panacea, yes they help but these are situations where the extraordinary becomes the norm. Where the unseen and the unheard become my chosen way of living, where faith is less of a word and more of an act. I make these choices everyday, resolute in my understanding that this is a season and every season has an end. I lift my eyes upwards, beyond the hills because therein comes the strength I need to make each day count.

I have since learned the hard way that sleep and rest might seem synonymous but I can assure you that they are not. With a satchel of pills readily handy, I now waltz through life on my own terms; battered but not defeated, isolated but not alone – itemising with every experience, the triggers that lurk not in the shadows but in the every day activities of human life. I have hitherto stated that without the turmoils of the storm, life really is devoid of substance but for me, every night is a unique experience as I combat the sinewy arms of insomnia. Pain still lingers even though I choose not to accept him as a legal resident within this body.

It is a new day again, replete with all the special needs provisions I require to face each day, with aching joints I embark on today’s journey. Thankful for today, I strap on my accoutrements for this body, arm myself with my cane and indulge myself in a hearty meal for my Spirit because it will always be about the strength on the inside. That is what keeps me going each day as I carefully make my way through paths that have been lavishly decorated with extra sensitive mines, each one poised to knock me down. ‘Fire away’ I chuckle, there is more to me than a chemical imbalance, there’s more to me than trembling limbs, there’s more to me than dystonia……there is so much more.

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

Adios!

Defined in defiance…….

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Bring it on!

                                              Bring it on!

Every great man, every successful man, no matter what the field of endeavor has known the magic that lies in these words: every adversity has the seed of an equivalent or greater benefit” – W. Clement Stone

Sometimes, usually most times, the best of us is glimpsed when the going is at its most toughest. It is no huge fear of intellectual superiority that brings the realisation upon us, that we all must have some sort of anchor even as we sail on life’s unpredictable waters. The question is when the storm hits, how firmly tethered are we to our anchor and more importantly what are we anchored to? It has always been a much easier route to just allow ourselves to be like flotsam on the seas however what exactly is the achievement of flotsam but to serve as deterrents, chaff and sometimes nourishment for another living organism but one with properly defined purpose.

I hit one of my low ebbs yesterday and it is quite difficult but oddly familiar encountering the blank stares from people when the subject of dystonia is brought to the fore. Well, nothing really to be alarmed about because this is from the journey of one who has had the very rug swept so violently from beneath him that calling it a fall would be be a stunning display of tactfulness and diplomacy. I have witnessed, sometimes in such an emotional rollercoaster of a ride that even vertigo is almost blissful, the depths of strength that we unknowingly possess and just like the five foolish virgins, we allow the best moments pass us by because we have failed to understand the times and therefore are ill-prepared when those moments arise. Nurturing that seed discovered during great diversity is definitely not a task for the faint hearted, it is what truly defines you however it frequently is associated with the tenacity to defy the odds so heavily stacked against us.

There is nothing that cannot be achieved when we truly set our minds, apply ourselves to and keep our heads and eyes uplifted even in the face of smirking attitudes of detractors and naysayers. Do give it some thought; because one of the very first lessons I learnt in science is that nature/life abhors vacuum and so regardless of your indifference, you are either helping prop people up or simply put, you are gleefully tearing others down or so viciously attempting to do so. Hey! You must be on one side and unfortunately the skill set to vacillate between both ends is yet to be created, so where does that put you? Facing the struggles of pulling yourself up is no mean task and quite daunting I must admit. However, the strength to push through the odds and limitations that we have been unwillingly thrust into is the beginning of a signature lifestyle that will be an example for many.

As I toiled with my perceived failings of yesterday, I was quietly reminded by JOIV that I am usually my worst critic and sometimes we need to be reminded of where we have come from. Dwelling on the successes of the past has the ability to either make you a dreamer with no urge to wake up from the self-induced slumber or it can challenge you to make today count with its own share of success, irrespective of how seemingly tiny the steps we have made. The bottom line is that it is best to totter forward on tiny steps, with the appropriate attitude of gratitude to God who is in charge and quietly steering us towards an end that is simply incomprehensible when we dare to imagine, than slide backwards. The reality is not that we are limited by dystonia or whatever fancy words that science has so eagerly tagged these limitations but how desperate are we to defy these convoluted words and constraints, and actually use the broken bricks in our life to fashion something worthy of being a Masterpiece. That has always been what we are, we just so obviously lack the knowledge and understanding!

The great heroes from the past had their own struggles, not like dystonia some will vociferously argue however these heroes would not be if they had succumbed to their limitations. Moses was a stutterer, Peter was uneducated, Paul was a fanatic and yet they changed their world, defying authority and the traditions of men that had been blindly followed for centuries. Beethoven defied deafness, Handel defied blindness, need I mention Ray Charles, Stevie Wonder and Fanny Crosby? They were defiant and refused to succumb to an acceptable symbol of helplessness, instead they defined themselves through these limitations and so I  dare to ask myself, why not? I am unashamed to say that defying odds is no easy task and of course there will be days like yesterday where your limitations best you and ignorant people amuse themselves at your expense but then they are doing what they can only do, they did not create me and so why should I let their ignorance and misplaced priorities define me. That call is mine to make, and that towel will never be thrown into the ring regardless of how unsteady I seem or whether tremors are seen as fear or some other unrelated emotion.

I am defined not by the utterances of men but the carefully crafted promises of an infallible God, who does what He says He will do and without counsel from anyone – who dares to counsel Him anyway? Who can rewrite His script for my life? Who can relocate me from where He has placed me or has a better destination for me than His? He has blessed me and so what can stand against that? And so even as I set my face like flint, with the radiance of His beauty illuminating my paths, I know that I can do all things because He’s my strength and what inexhaustible reserves are available to me. I have walked through the valley at its darkest and emerged strengthened not weakened. Stumbled through thorns and emerged with the fragrance of the roses permeating my life. It is with this encounters that I am convinced that despite the low of yesterday’s experience, today is the present and marks yet another opportunity to have a better day – that is the choice I have made already in the wee hours of today. I am committed to finishing well not just for me but as a symbol of appreciation for the gift of my life, and the lives of a myriad of others that I am privileged to meet.

Remember this, no other man has the capacity to define your life but you and so instead of rolling over like a possum and play dead, I arise today determined to make it count for good. My limbs may tremble, doubts may lurk at the corners waiting to jump out but I will be defiant in the face of all the odds and make my journey worthwhile. That is what I, at the very least owe myself because there will always be many others craving for that ember of hope just to persevere, and that is what I can and do give.

פרידה עד Continue reading

Just do right….

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When you get, you give. When you learn, you teach!” – Annie Henderson

These simple words resonate through my entire being as I awakened to a new month, albeit a new day and I reminded myself that with each new day comes hope, help and loads of opportunities. Have you ever wondered why at certain times in your life, the things that usually go unnoticed suddenly assume an amazing degree of clarity? Or ever wondered what the entire purpose of being alive is? Or ever considered that niggling voice within you that insists you do what really do not feel like doing at certain moments? I believe that within each and every walking human, there is a purpose for being alive and whenever doubt assails you, be sure that you have acknowledged that purpose and are walking conscientiously by it. Hmmm! Pretty intense but that is the only way to be sure that your life counts for something.

It takes me 374 seconds to walk to the closest mail box and back, and yesterday just as I was struggling with getting my disobedient fingers to reach for my keys, I had the profound privilege of watching one of the most common wildlife events. I observed an orb-weaver spider diligently going about its interesting and intricate task of spinning its web. For many of us, it is an unknown fact that this seemingly simple task of spinning webs is not just a signature of most spiders but is an energy tasking one, usually requiring loads of protein. I really do not like spiders or crawly things but the beauty of the effort that went into the normal chore of most spiders was what interested me. And it made me realise that just like that spider, we all have been designed to excel in one thing and that is simply just doing right.

“I suppose there’s no good answer to that, Ryan. I wish there was. But if you take the wrong, path, something deep inside you will feel twisted. There are times when that will be the only way to know the right from the wrong.” – Inara Scott

Whenever I do get out, after loads of rest because of the energy sapping tremors associated with myoclonus, I am confronted with a myriad of responses from individuals – ranging from those who are freaked out and are frightened that it might be contagious to those who think it is a thing of amusement, barely concealing their smirks. Those who like Rose, have an understanding of the unique disorders of the human body and are eager to know more, and there are those who are unable to appreciate the fact that this is not something one would choose even in a totally inebriated state. There are those who flaunt the present wellness of their bodies and those who are unknowingly destroying themselves. However, the unifying factor amongst all these categories of humans is that we are all humans and so like Maya Angelou, I teach myself to recite this phrase ‘I am human and therefore nothing human should be alien to me’, that way I can deal with the barely concealed acts of insensitivity when I do encounter them.

I have actually embraced the Redcord therapy sessions (will put up pictures someday) because it is something new and even as Igor reiterates ‘you are a unique patient with a unique challenge’, I brace myself to continue to strive to do the one thing that comes easiest to a human, regardless of skin colour,  origins,  idiosyncrasies, or denials  – just doing right, (of-course in the effort lies victory). Whether we choose to acknowledge it or not, we have all been designed to do right and although we all daily wage battles within ourselves to stray from that divinely assigned task, that is our task – to just do right and regardless of how much pain I am in or how discomfited I may be – I want to do right, I choose to do right. It is so difficult wearing my own shoes and heck, some days just getting out of bed is so herculean but I have and am committed to that task because that is how I can improve myself. It is only when we acknowledge that we get, that the need to give can be properly birthed. I am given daily and so I choose to do right by giving as much as I get, being careful to sieve out the anguish of being ‘unique’ and give of the good I receive daily.

“If you are at a point in your life where you are not sure what you need to do, which path to take, or whether you are doing the right thing. That is probably because your inner being is wanting you to delve deep within yourself and find what you truly want from your life, Your spirit is trying to guide you towards your life’s path. Please take a moment to think what you really want to do that you haven’t done so far, and what would make you happy. That’s probably the answer to your confusion. All your answers are within yourself’ – A. E. Moss 

Now I am at a point in my life where I am sure of what I need to do because I know that happiness is a choice you have to make and for me, despite the loneliness of my sojourn or the looming clouds above, I am not giving in. I will continue to do right even if it means I get to stand alone. I will persist in doing right even when the stuttering wants to obfuscate the very words I want to say. I will persist in doing right even when it makes me different because I know that is what I was made to do and as each day draws to a close and I sit in watch as the new day dawns because I am unable to sleep, I know that I am further strengthened by the very One who is my designer and my Companion. When I realise with every passing moment that my life is but a journey, then I know that as I plod along, I can only but leave behind me legacies by the very actions of my hands and not so much by the words of my mouth. I can only do right by doing it, not saying it and pray someday that just one person will catch the vision and walk with it. That I dare to say is a life fulfilled.

What we can do, we must do: we must use what we are given, and we must use it the best we can, however much or little help we have for the task. What you have been given is a hard thing–a very hard thing… But my darling, what if there were no one who could do the difficult things?”  – Robin McKinley

It is indeed a new month and I always say it is better late than never. You can never go wrong when you simply just do right and so as I enthusiastically embrace the month with hope and determination, I know that within me lies the strength to not just triumph over this disorder but to also do right. As each of us, in his/her own little place begin to just do right, what an overwhelming tide of events we can cause to pervade our broken world. All it takes is to simply acknowledge that with the dawning of each new day, just like we welcome the breeze on our faces and bask in the warmth of the sun, so also we must acknowledge the good we receive and freely give just as we receive. Just do right, persist in it and behold the awesomeness of fulfilling your purpose daily.

Remember what a miserable tale ours would be if we choose to just exist rather than live purposefully. Just do right!

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!