Forging the link……

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Forging the link

Forging the link

I somewhat, till this day, see myself as a hands-on type of bloke although going by prevalent circumstances, that phrase by itself seems untenable. The truth is that while design and handcraft has always appealed to me, I have also allowed the process of building things from scratch influence my daily actions. Growing up, my parents insisted that in addition to the traditional education, you had to learn a skill and that period of internship usually occurred between the end of high school and the beginning of college. I still hear the words. “God might favour you and send you to a strange environment and while others are clinging fiercely to the stereotyped job ladder; many bruised, bloodied and with dreams dashed – you can take a step back when you don’t land that dream job and begin doing something on your own.” Maybe that, to a very large extent has influenced my mindset when it comes to education and career.

For me, when the break came and it was time to ‘go learn a craft’, I opted for carpentry and photography. Carpentry, because the artisan who roofed my father’s city house was a very smart fellow, skilled in his work and despite having a aspeech impediment, was not fazed at all having a conversation with me. My choice of craftsmanship was instantly made when I found out Zippamore was in his third year at college and was actually self-sponsored, and the acquisition of that snippet of information pretty much killed the idea that some jobs are meant for some class of people. Yes, my parents ensured that there were no airs about us, we might not have been wealthy but we were not poor either. Both my parents were educated and held down white collar jobs and so it would have been quite easy to develop an air of privilege based solely on that, but I can tell you that they neither allowed or tolerated any of that foolishness. We earned what we got and learned that unto each person, a purpose lies, a path beckons and a destination awaits. I still remember the very first day I walked into the carpenter’s workshop and found the other world where brawn was almost as equal as brains, where I learned the necessity of taking care of yourself after being bloodied once or twice. Oh, it was an eye opener indeed.

Unfortunately, there were not many blacksmiths that we knew of but besides carpentry, blacksmithing had always appealed to me because I really loved working with metal. Throw in the classic Robert Louis Stevenson ‘Treasure Island’ into the mix that was my life then, and a blade, a spool of cotton and a match book became constant companions of mine. Nearly four decades after, my fascination with metals and their hidden potential still remains and now I am also an avid watcher of History Channel’s ‘Forged by fire’. The importance of design was also conveyed to me then because without a design to keep you on track, many days will be spent wandering around in circles. So it is truly impressive seeing how an otherwise innocuous piece of junk metal, steel scrap can be forged into a beautiful tool…..but there is a process before that junk becomes that beauty. Three essential features of any process; the furnace, the hammer and the anvil. You do not go interning at an active blacksmith’s forge dressed in duck whites because you sure are not going to remain that way within the first hour. Copious amounts of perspiration, lots of heavy lifting and wielding are inevitable elements as you try to draw out that steel into lengths and patterns that meet the specification of your design.

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It is quite appropriate for life and its many events to be likened to a couple of days in the smithie’s. It is a process and if the steel could talk, I know for sure that sound mufflers (not just the ordinary ones) would be a critical tool because the screams of refusal from the steel would most definitely deafen you. But it doesn’t protest as it is thrust into the forge where it is left until it is almost white hot and only then can it be taken out and pounded by the hammer (pneumatic ones now) on the anvil till it has a rough semblance to the design that you had in mind. One lesson that I learned at an early age is that a chain is only as strong as its weakest link, it does not matter how long or heavy the chain is, its fate is down to that weakest link. At the shipyards, those huge anchors that keep the ship in place are usually at the end of a long chain and more often, a key part of a ship mate’s daily role is to inspect that anchor and chain to ensure that the each link on that massive chain is devoid of cracks, fracture or any form of impediment because when that order “heave to” is bellowed out and the anchor is released, just that one weak link could determine the safety of the vessel and the lives on board.

We are in the summer and each day is a struggle for me because I find myself totally exhausted with just the least amount of work done. Heat ironically is one of the triggers for the primary generalised dystonia and myoclonus that I have and so I would trade Alaska or Melbourne for a proposed vacation in a heartbeat. However I know that you cannot go through life having just one season and so I try to stay as hydrated as possible, take as many showers I can, forego the layered clothing and still cope with a body that is hurting in almost every joint at each day’s end. At the onset of this unique journey that I am presently on, I learned painfully that there are smarter ways of getting a task done than just applying sheer muscle. Despite the number of comments I receive about how ‘toned’ I still am, it amuses me because I really wish I could for just one day, instruct my brain to let my nerves and muscles be. The tremors are physically exerting and just having a severe dystonic bout lasting more than an hour is pretty scary to even imagine but life is a process.

These days, I have taken an entirely different approach, I choose to be as welcoming as I can be especially on social media because if only individuals could read on the face what each person is going through, I am optimistic that our world will change for the better. Being a member of so many support groups has and is still an honour to me, I have encountered so many people from all over the world with medical conditions like mine and just being a member of such groups continues to drive home each day, the fact that a chain is only as strong as its weakest link. Each day, somebody somewhere is having a really torrid time and being strong enough to utter these three words “I need help/prayers” is actually a testament to the intrinsic strength that defies human comprehension. Having a private conversation with someone who’s almost at their tether’s end; encouraging them on, reminding them of the fact that to every beginning, there is an inevitable end is so gratifying because it takes my mind off of my own struggles and lend an ear or a shoulder to someone else.

Entirely disregarding the picture that we may present, like two totally inebriated chaps exiting the pub in the wee hours of a new day, we prop each other up and stagger on, choosing to ignore the ignorant yet scathing looks and comments, we acknowledge that we are a chain and if one of us goes down, then we all go down. It does not matter if the ache in my neck is killing me, or I can barely get out of bed, when someone cries out for help, I choose to be there because as long as my vocal chords or fingers don’t tap out on me, there is something I can do because I am a link in that chain. As we constantly encounter life’s events, I choose to see this dystonia as the forge and regardless of how long I spend in it, I am confident that the finished product would be worth the pain and agony. The longer I spend in the forge, the better and stronger I will emerge and as the hammer and the anvil painfully stretch me out, I choose to remember that there is a design to my life. A design that was not drawn by me but one that in due time, show off every strength, facet, allure and usefulness that had hitherto been buried within.

God’s design is not flawed, that I tell myself each day and when the heat of the furnace threatens to becloud my senses or the pounding of the hammer seems like it is going to irreparably break me, I find comfort in these whispered words; “I am being strengthened and purified and designed. I cannot rely on my own strength because I truly do not know my own strength. I am but a link in this chain and I refuse to be the weakest link!’

Remember that if God gave His very best for us when we least deserved it, He has by design placed us as a link in a chain of lives and therefore nothing is good enough to hold us back from giving. We are all distinct and unique signature pieces of God’s superb craftsmanship. There is no solace in the darkness, no display of strength in pretention, no truth in a cunningly crafted veneer of falsehood because at the very end, you have nothing but a life that has been lived either by the choice of never to be the weakest link or a life that like the will o’ wisp will be forgotten once it has barely even begun. There is no misery in sincerity, no victory in glorying affliction, no weakness in vulnerability however at our life’s end, all but nought will be laid bare and even as the anchor buries itself in the sand, our chain of lives will either stand in testament to a purposeful life or shear apart in dismay.

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!

….bathing in the rain!

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It is exactly 12 years to this day that I unilaterally took a leave of absence from my cozy job with one of the globally recognised brands in the banking/financial industry to sign up at the orientation/boot camp for the Direct Short Service Corp into the Navy. To many, it would have come across as an act bordering on the vestiges of insanity but for me, I had become completely fed up with the monotony of the regular 9 – 5 and just needed something more adventurous. Being put through the paces was no exercise for the faint-hearted especially after the daily wailing of the bugle interrupted whatever respite I was trying to have. Nonetheless, this was what I wanted.

Today, I have no regrets because from that decision, my life took on so many twists and turns that being in a maze would not be too much of a stretch for the mind. Five years after that decision, my neurological system opted to become autonomous and I plunged headfirst into an unfamiliar world of neuroscience, neurologists, dystonia, myoclonus, sciatica, insomnia. Pain, both external and internal, became constant companions and suddenly my to-do list which included setting up funds for my daughter up to university levels suddenly became just a scrap note. Struggling to understand what and how I had started occupying a niche in the opposite extreme from the fiercely independent, highly analytical and logical fellow to becoming someone who pride meant little or nothing to as I struggled with the simplest of tasks like getting out of bed. It seemed as though there were myoclonus triggers hidden behind every simple chore

I can still recall how unreal it sounded (returning from my weekly visit to the chiropractor) as I boarded a crowded Bus 379 from Ilford to Dagenham, when the driver (bless her soul) turned around in her seat and announced “could somebody please get up and give this disabled man a seat.”….Oh yes, she was referring to me and even though I still did not see myself as being disabled, that was me and the picture people saw. It is kind of crazy when you have these flashbacks and suddenly huge waves of nostalgia tend to drown you. How did I get here? What happened to the detailed plan I had? But there I was, all alone, each day a constant battle raging within my soul as I strove to overcome the limitations of my physical strength. Mind over matter! Mind over matter! The mantra did not seem as easy as it was when I wrote it down or told someone else.

Fast forward to this day, I can attest how topsy-turvy this journey has been and I mark today as a notable one because it has always been about the choices God helped me make each day. Refusing to give into the waiting arms of hopelessness and depression, realising that my life meant more to some other person besides me, that even when the clouds were so dark that it could pass for midnight and the gales of the biting cold winter buffeted me so much, I just had to persevere some more even if it meant calling out to or accepting the help of a stranger. Today, I realise that as many strangers came up to me to thank me for inspiring them, they were infact the very ones who were a source of inspiration to me. Strategically placed by God for times when I wanted to just give up, today they are my family.

From those dark days, the light now shines and yes there are still dark days (obviously) but I look around and realise that the options I had back then are still the same two – quit and sink or struggle as hard as I could and stay afloat. We all go through life and what we eventually become is a reflection of the everyday choices you and I make. That the very bleak times we sometimes face can either be a garment that we get lost in or we can use them as the opportunity to train our eyes to see that tiny glimmer of light ahead. We could use those times to lose the individuality of our person or we could use them to further understand that to every limit and constraint, we still get to call the shot because we all were created for a purpose. We could use those times to understand that we were not created to walk alone as against using it as a benchmark for all the bitterness and pent-up resentment just looking for an outlet.

I woke up today, realising that when it is pouring outside – it presents an ample opportunity for me to just get out there and wash off the grime that has built up from listening to the wrong people. To wash off the grime that comes from basing my actions on thinking that my efforts will always be appreciated. To wash off the grime that comes from succumbing to the heat of the moment and letting scathing words do damage, if I choose to. To wash off the grime that comes from engaging in thankless tasks and expecting other people to be grateful for what I do. Today, as always, I choose not to stop because these very ones are there unwittingly to further propel me to heights yet unknown. The rain will always pour, what we see it as and what we do with it is best left to each person. Notwithstanding what we do with it, it will surely rain and as each peal of thunder reverberates through the heavens and the lightening slashes through the skies, it is up to us to choose on what side of the line we want to stand and live.

Remember that it is in the house of sorrow that much wisdom is learnt and it is in the times of adversity that you best count your friends. For on this journey called life, there will always be a meeting and a farewell and so make every opportunity an event that will never be forgotten.

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

Adios!

….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!