Balancing the scales…..

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https://redzhis.files.wordpress.com/2017/08/balancing-the-scale

Give a man a fish and you satisfy the hunger pangs of his stomach for but a day. Teach him to fish and you assuage his fears of being hungry” – Maimonides. I grew up with dogs, ever since I got Snoopy as a birthday gift; with his floppy ears and wheels attached to his paws, faithfully following me everywhere. Since then I’ve never looked back, that the dog is man’s best friend is still a fact in contention but not for me, because life has shown me that you find the rarest of gems in the most unlikely places…..if only you can recognize it when you hold it. As a parent, I believe that owning pets was my parents’ way of instilling responsibility in us and I am passing that lesson on to the next generation. Ofcourse not all of my biological siblings share my passion for dogs, however I’m talking about me. One item on my to-do list is becoming a canine consultant, owning a farm where I can breed dogs, socialize them and also be a refuge for strays….that box is half-checked because dystonia swooped in and like the carefully arranged dominos, all my dreams started unraveling while I helplessly watched.

One of the very first erroneous lessons I learnt was that if you wanted a male dog to become bigger, then you took a trip to the vet and tearfully watch your dog being emasculated. Nursing the dog back to health was a responsibility borne out of love and compassion. Despite the emasculation, I cannot recall having a dog with such a growth spurt that it learned credence to that lesson. The dogs could do everything but when it came to reproducing its kind, that was a ledge it could never ever get to and so I’m forced to think that it was just a way of instilling birth control. Immediately I became independent, I waded into dog breeding and the subject of emasculation was an anathema. Yet again, life happened and I had to go through the painful process of being stripped bare so I could learn that no matter how analytical and logical I want to be, there is a limit to what I can do. I learned that trust and faith were more than just words but they embodied a concept that we barely grasp. It is always in the dark nights, the fiery furnace, the valley of desolation, the house of mourning that much wisdom is learned. It is in those times that you realize how little you know of life and its seasons because some lessons just have to be acquired through sheer persistence.

As a kid, barely holding my emotions in check, I remember those visits to the vet. Those memories are so vivid that even if the city was rebuilt, I am certain that I can still locate where the vet clinic was located. Today, I understand that life is like a pair of scales, and each day, we must utilize our abilities and limitations, carefully applying them in the right proportions to get the scales balanced. It’s about learning how to prioritize, emotions and sentiment in check, because until you attain the right measures, you just might spend endless hours fluttering from one pan to the other. And since time is always constant in its passage and many of us unfortunately are yet to understand the word ‘balance’, how then can you apply sugnificant and needed actions? Actions based on a preconceived and largely wrong understanding & foundation will never get you anywhere. And so sometimes, just when you think that you’re on a roll: all stations manned, all hatches properly secured, retirement plans drawn up, that’s when the storm hits you and shakes your very foundations loose. It is then the realization dawns that you are neither The Architect or the Landowner, but just an actor on the stage called life.

Living with dystonia has tipped my scales. Now I find beauty in the stillness of the dawning day, I appreciate the opportunity to help another in need even when I am barely able to support myself. I understand that it might seem alright to bask in the bliss of ignorance but in reality, ignorance has no bliss. It is an empty gourd that must be filled and if you choose to dance around with your empty gourd, convinced that when the drought hits, there will be something in your gourd to quench your thirst, then what a significant display of folly awaits you. The emperor with no clothes on! Even though your meagre wealth has gathered a train of sycophants, the harsh truth is that proudly strutting in your nudity is what is amusing the crowd around you. And someday when your barns are empty and your cellars dry, those sycophants will flutter off to the next ‘big’ thing, leaving you to come to terms with reality.

I know what it is to have and not to have, I know what it is to have people tracking you just to gain your attention and lay out their woes, desperate for some token from your money belt. I also know what it is to be ridiculed because of lack, to be derided because of one’s disabilities, to be scorned because I am different. I know what it is to shed tears of frustration because you know that you cannot get on or off the bus all by yourself. To discard ego and solicit for the attention of a caregiver, to swallow the bitter bile of pride and accept a much needed meal from a stranger. I know what it is to watch with teary eyes as a friend goes fund raising from strangers and people she’d never have spoken to just to ensure I can keep my next medical appointment. I know what it is to realize that the trust set aside for tuition for my daughter is in the negative, when I have to rest after taking a shower so that I can recover just a bit in order to get dressed. I know what it is to listen to the unanswered ringtones and voicemail on a friend’s phone because it is assumed that I am calling to ask for financial aid.

Dystonia emasculates; forcefully taking from you those things you taught were part of your birthright. Things like being a man: providing for your family, doing whatever it takes to cater for your loved ones. Emasculation is not circumcision! They are both processes occurring around the same area but that is all they have in common. The society’s definition of a man can batter the senses as it struggles to readjust your roles as a man living with dystonia. Rather than attempting to corral the chaos, choose rather to dwell on the little details that make life beautiful. The ticking of the clock, the slight scent of the evening breeze, the scurrying of the chipmunk…they might be too insignificant to catch your attention amidst your busy life but those things assure me that there is beauty in the ashes, gold in the blackened hearth, hope and inspiration from my life.

My ability to reproduce or not isn’t what defines me as a man, neither is it in the color and number of my credit cards, it is not in my inability to do a regular 9-5 job or the constant weakness that plagues me. My abilities and inabilities don’t define me, it is what I’m being used for by God that defines who I am. My ability to embrace my caregivers whilst answering the barrage of questions my daughter has as she grows up. My fatherhood is not measured by how long I can stay in the suite that houses my business (waiting for that big break to come), rather it is in the little fun activities I can still painfully participate in with loved ones. It isn’t measured in the dismay that the elevator is not functioning and my office is upstairs, but rather in the silent company as I prepare myself for that one torturous attempt climbing the stairs. It is not measured by the fact that I am barely able to wear my shoes but rather in my daughter’s excitement as she helps me put on my shoes. It is not measured by my inability to play a round of basketball or soccer with her but rather in the slow walk together to the park and my coaching from the bench beneath the trees. I have received numerous ‘recommendations and suggestions’ from friends but they are unable to grasp the everyday challenges I face; that even on my bed, I have to be careful in laying down so as not to set off a dystonic bout.

I am a medical enigma because I am not fazed by what the limitations of dystonia are, I set a goal outside of my comfort zone and even when I am being told, “you should sit this one out” I choose to press on because it’s just one shot I have and so I am committed to making it my best shot in the present circumstances. Yes, there will be the inevitable price to pay as my body painfully tries to re-establish an already skewed equilibrium point, but I gave it my best shot. Like the night owl, I sit quietly and watch, with limited movement in my neck not so much as to gather wisdom but to carefully apply my strength when it’s mustered because I know that regardless of the uniqueness of my situation, I must attain that balance. I do not have all day to spend because my efficiency is indirectly proportional to my time. It is not wisdom trying to redefine laziness, it is laziness trying to appear wise when this is my own race to run.

With every need that arises, a balance has to be attained but in order not to embark on some frivolous wild geese chase, I must first apply wisdom.  Your genealogy might stipulate that you should be tall, intelligent and athletic however your circumstances dictate something else. To grasp the definition of my boundaries, I must first of all acknowledge that there will always be boundaries but what I do within the parameters of my boundaries is a function of the choices I make. To either shine bright like a diamond and amaze or glow dimly like the coal embers and give off the much needed warmth, that is a choice to be made. And even when ego wants to reassert its place, I am careful to remember that ego is like the bliss of ignorance. It is available but not necessary for this season and even as I struggle with the mild irritations that occur as a result of my impaired boundaries, I must choose wisely.

What miseries lie ahead for the one who embarks on a journey without first learning from the experiences of others who have plied a similar path? For many have developed an ardent distaste for courage and are eager to put the blame for their limitations on every other thing including life and its inherent mysteries. Skipping around from stone to stone in the shallow stream is an obvious display of enthusiasm and excitement but it will serve me better to curb that outward display and instead use it in celebrating those who have greatly sacrificed their pleasures for my sake. Nonetheless whilst we struggle with our imperfections, let’s strive to inspire others by making every of our shots count. Even as we take the center stage, our caregivers are an irreplaceable aspect of our journey and without their selfless sacrifice, our journeys would have been choked to an untimely end.

Remember “no one can go back and make a brand new start, however anyone can start from now and make a brand new ending” – Anon E. Moss

עד ניפגש שוב, תן את היופי של ארשת שלו לזרוח עלינו

Adios!

The Abacus Path….

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Counting

Count your blessings

The abacus? Oh yes and there are many more from where that came – the hourglass, a logarithm chart, a pair of protractors and dividers, map reading with a twine and a rule. It’s usually funny when in the midst of a discussion with millennials, I refer to a word synonymous with my growing-up days and I am confronted with a look of utter bewilderment, on other occasions it could be a look of utter pity. As time passes by unfailingly, there are those times when we wish for some events in the past so that we correct them in the light of today’s world events. However time once spent can never be recovered and so with each new day comes opportunities to create new and better memories. There is really no gain in seeking to bask in the glories of the past, rather live in the present and utilize the experiences of the past. There will always be the memories to cling to and for those bad ones, their poignancy is gradually lost with time, Affirming the truth that as voyagers, we must make something of what life hands us.

It is the beginning of a new month and the last couple of days have been truly horrendous especially with the summer because heat is a dystonic episode. Again I am reminded that with every hello, there is a corresponding goodbye and so I write this piece in dedication to two unique individuals that I have truly been blessed to encounter. There is truly, for me, no greater satisfying endeavor as learning how to count each day’s blessing because the contrary option would be to give in to the chronic pain that has become synonymous with most neurological diseases. And most assuredly, these villains are ready to pile on more strain to an already over strained system and so instead of conceding, I choose to focus on the benefits of each new day. In the course of my many interactions, I have been blessed to rejoice with those rejoicing and comfort those going through adverse times. No greater examples readily comes to mind other than David Moreau & Dan Gearhart.

David Moreau was an exceptional individual, describing himself as the ‘Tip of the Spear’ at MS Warriors of Hope. Despite his valiant battle with Multiple Sclerosis, he always was eager to share another’s burden. With a love for life, he loved to give when and wherever needed. With his catchy statement,”I am not chronically ill, I am medically fascinating” a statement in essence that just bore testimony to a life based on a resolute faith in God. His last post on social media was at 6am CST, August 1st: “OMG…woke up to increasing pain in my chest, this hurts so bad!” and despite being given the all clear by the ER personnel, he succumbed not to the dreaded MS hug but to a heart attack. A heart that was the source of so much joy and inspiration, he was truly inspiring and now he has gotten the victory over the MS that threatened to bully him into submission. For in the bosom of God, there is no pain, no illness, no sorrow. “Farewell brother, you have run your race and finished strong. Now I am more committed to paying forward every blessing I receive!”

Dan Gearhart is a Parkinson’s Disease warrior but despite that, he is currently one of two major combatants in another battle that ensues. Life all by itself is not the ideal standard for fairness, however what defines a man as a champion is learning to navigate life’s choppy waters and never cease rowing. A father of 3 adorable kids, he just got to see them after 65 days of deprivation and is currently striving to ensure that he remains the loving father to his kids despite being ejected from his home. In all honesty, I understand the added strain of being kicked while you are down because I didn’t get to see my own daughter in a period of 42 months, where dystonia was labelled as a mental illness interfering with my role as a father. However that is in the past, because it is futile to be confined to the past when there is the present to live in and make something of. Today, she is with me and it is just an amazing testament to the faithfulness of God, new blessings with each new day. It is unimaginably cruel when your medical challenges are used as a cudgel to bludgeon you repeatedly however true strength is defined by the number of times you get up after being knocked to the ground. Wars are long and hard but victory is not achieved by sheer brawn but by the application of wisdom and the support of allies.

In the course of my own journey, I have learned that today’s achievements were yesterday’s dreams and so in like fashion, our achievements of today should be the stepping stone for those coming behind us. Learning to number each day’s blessing is a more worthy venture than collating the number of times I wince from the discomfort that is peculiar to dystonia. Despite not arriving at a stalemate with my knees and my back, I am careful in my choice to focus and help another rather than focus on the chronic pain that every little movement causes. Even after the boisterous laughter, I choose to smile through the pain and when the groans become too much to muffle, I still press on. Refusing to be restrained by the clinging tendrils of huge trees and the darkness of the forest, I press on towards the glimmer of day knowing that the slight glimmer marks the end of this foray in the forest. From past experiences, I know that it is not about how gigantic the challenge is but rather the assurance of victory by faith. It is not about my dependence on medication or the flamboyance of some medical expert (David was in the ER prior to his demise!) but rather on my acknowledging that victory has already been won.

Today, I am yet a witness to the birth of a new day and already I choose to celebrate with friends whose birthdays are today. I choose to celebrate David’s victory over MS rather than wallow in the misery of ignorance. I choose to stand with Dan in his fight for his kids: praying that his strength does not wane and his faith not be relinquished in the face of so many daunting foes. Sending a letter to Governor Butch Otter and Lawrence Wasden to prevent calumny and injustice from reigning is an action that I am committed to, because as long as you are able to discern a need, there will be provision for that need to be met. In my journey, I have learned how to nurture that little glow of hope even when the night is at its darkest because I know that the dawn will soon come and so I better not get entangled and hopelessly stuck in the hostile and marshy territory of this neurological nightmare. I have learned that with each significant hit to my FICO, there is more room to display the significant rise when the time comes because I am confident that someday change will surely come.

It is best that each day is begun with the counting of the day’s blessings or else chaos and hopelessness might just seize that opportunity to reign unchecked. There are experiences that truly cannot be shared through words and so I choose not to devote energies towards trying to make people understand what an average day looks like. Once a need is discerned and there is no action supporting that discernment then it is foolhardy to believe that we are not living selfishly. I want to do something when there is a need and that want will usher in supplies. Without denigrating the lives around us, let the choices we make begin by counting the blessings of each new day and when you do, you will find enough to give to someone truly in need. No man is an island unto himself and with that in mind, I live each day eager to assist another even if we are both marooned on the same island. No better reward exists than standing alongside a friend and helping them along in their darkest times, that is part of the reason that explains our present location and were I to nonchalantly take each day’s gifts for granted then it would be foolhardy of me to expect more tomorrow. It is in the little that faithfulness is born and nurtured, so that when the little becomes large, we will be clear headed enough to do the appropriate thing.

Today is another new day, what better time than now to pause and count your blessings. ‘Shout to the Lord, all the earth’ is not an option, it requires full participation and so if there are doubts that still reside within your heart, be diligent enough to rid yourself of them and truly count your blessings – name them one by one if need be and it will really surprise you what God is continually doing in your favor. ‘What lies behind us and what lies ahead of us are tiny matters compared to what lives within us.’ – Ralph Waldo Emerson

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Lasso’ing Sleep…..

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Lassoing Sleep

There will be always those days when it seems like this journey will overwhelm and crush me and in those times, knowing that there are people who are going through similar trials is always a much needed boost. In the last 8 weeks, I have been divinely privileged to have become a member of so many support groups, and just the realization that you can be yourself amongst others without the looks of derision, pity or disgust is quite profound. Acknowledging that for every thinly concealed nonchalance, there is a friend who knows what you are going through. And when you see a request for prayers from a new friend, it is not a gesture for fame or recognition, but a sincere request from someone who is going through torrid times.   With the medical capes of Lupus, Fibromyalgia, Dystonia, MS, Parkinson’s Disease and similar villains associated with the neurological system casting shadows, you can truly appreciate the warmth associated with being in a group of defiant individuals.

One of the support groups I belong to is aptly named ‘PD Night Owls’ because there is one common denominator with all these vicious medical conditions and that is the inability of the body to get its much needed rest. In addition to the ravages being wrecked on my body as a whole and the adverse influence it can have on my social life and activities, I still have to confront those little horrors that come with such conditions. Just like the mythical Peter Pan, I will claim my own shadow someday, (because the shadows of these villains just seek to further highlight mine) even if it requires patience, endurance and skilled needle work. As a child, one of my fond memories is darting around with friends trying to escape been tagged or trying to tag someone else depending on what your role in the game was. With the passage of time however, all the fun associated with that game is stored away as cherished memories even as I attempt to dole out some much needed discipline to a little rascal termed ‘Insomnia‘. The futility of playing that game in present times is more than just age-inappropriate, rather it is one where the odds are so unfairly stacked against me that it would be foolhardy to even contemplate it.

Even with a plate already over laden with all these nasty medical challenges,  insomnia finds a way of converting itself into a sauce that trickles through, further tainting the package with extra foul taste. Ideally, life is a series of decisions and choices and so instead of partaking in an unfair game, I choose to witness the birth of every new day. Again perspective plays a significant role, because perspective is a result of a choice being expressed and so I do not detest the approaching darkness of twilight signifying the end of a day or envy the stillness of the dawning that marks the beginning of a new day. Instead I count myself blessed that I am able to witness the birth of every new day, that is a choice I make, instead of devoting energy towards battling a foe that acts as the reconnaissance agent of a massive horde. I have learned that it is better to study your foe(s) for any signs or weakness and when you do find one, not to let a moment pass by without any action from me. Alternatively, I re-access my armoury, evaluate my relationships/allies and utilize what I have even if it requires a little bit of tweaking.

Most battles are won through the application of wisdom rather than just sheer brawn, and so instead of engaging with insomnia every day, I have learned ways to circumvent participating in a seriously skewed game. It is no longer rocket science that the body as a dynamic system requires a minimum of 8 hours of sleep to enable it reset and be ready for the next day. In recognition of that, what do you do to a body that is thoroughly exhausted and in need of sleep? When the habits inculcated in earlier years of running around in a Ferris wheel, have now turned around to nip you in the derrière. I try to lighten the situation by explaining that the brain is such an amazing creation, and so like a commander in charge on the battle field (safe and secure in the skull); it is still strategising, processing, sending out signals and assigning tasks to a neurological system that is almost buckling beneath the onslaught of neurological disorders. And in a bid to prevent a total collapse of this structure I call my body, I must find a way of reining in this magnificent commander lest in its efficiency, it pushes the body way past its limit.

A warrior in the heat of battle is confronted with two choices; live or die, and inadvertently the choice for life must be backed by commensurate actions or else death would gladly swoop in, ever ready like the vulture circling above patiently waiting for road kill. There is always the option of taking a short cut but again the ignorant will find that short cuts are never the fastest or the safest, and so we realize that depending solely on medication usually has a predictable route. With every dose, the body responds by building a resistance to that dose with time, and so we increase the dosage or switch medication. However, just like the fool belatedly realizes the folly of his ways, more often we belatedly realize the folly of borrowing an hour or two from Sleep time in order to accommodate that last meeting, finish up that work task that could not be left in the office or just tidy up that little assignment that is tied to a deadline that is usually unfeasible. There is no reward that can be obtained from cutting off your nose to enhance the beauty of your face, because if we do not adequately cater to the needs of our bodies, someday just like the Merchant of Venice, that pound of flesh must be required as payback. Contentment is not weakness, it will always be at conflict with the inordinate ambitions that characterize today’s world but it is an inseparable companion in the pursuit of noble aspirations.

Just like the daily battle with insomnia, there is the constant need to keep that tricky balance between living healthy and taking proper care of the body. For me, that balance is key because any slight external influence will not only destroy the balance but the chronic pain associated with daily living would assume proportions frightening to even conceive. You do not have to be sick to appreciate health, and so the same scenario plays out in lives everywhere: feign wisdom and take from tomorrow to assuage today’s needs. Most of us are undeniably guilty of that crime and inevitably the pretentious wisdom we applied will someday be revealed in all its entirety as sheer folly.  For every ill-advised action we take today, there will be the corresponding consequences tomorrow and it is not foolishness to be different. Sometimes we are placed in situations that did not require any input from us but to triumph in those circumstances, we need not embark on actions that are immediately associated with thought process of a child. There has to be an acknowledgement of what is real to enable us choose what we know the finality to be.

There is still time each day for that last valiant charge, a charge that has its distinct base in an unflinching faith in a Sovereign God and Commander. A charge that is not dictated by the size of this ragtag army but rather dictated by the promise of a sure victory ahead. And so, I will emerge from the trench – besmirched with dried mud, eyes red-rimmed, joints aching and clad in what barely amounts to a decent garment. With all the air in my tired lungs, my bugle will ring out across the mountains for just one final time today, notes marking the last valiant charge. Conveying in very clear notes to the foes arrayed all around that there will be no conceding victory today, there will be no terms of surrender and even if I have to be borne on my shield; I will seize that victory that is sure. There will be no ambiguity in my proclamation, ‘dystonia, there is no victory for you today and though you rave and rant as much as you want, there is no victory today, tomorrow or for as long as the battle rages.’

A charge more valiant than yesterday’s, my colors loftily raised in victory, a determination in the cadence of marching feet, there will be a prisoner of war but rest assured that it will not be from my ranks.

For just as your ranks ripple with number, and your fancy capes adorn you, so will they disperse in defeat, heads bowed in defeat, victory snatched.

To friends and allies alike, there is yet hope renewed and though the war be far from over, our anthem booms loud and clear, there is no giving up – not today, not tomorrow for as surely as the sun rises from the East, none will fall by the way because we depend not on the strength of men.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

PD, the bully….(Thanks Meg)

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By Meg Bernard ~ small girl with parkinson’s I live in a noisy world and I love it. I grew up in a household where there were six kids with ages spanning the small gap of only 7 years. There was constant noise and organized chaos. I remember specifically the evenings where my 3 older […]

via The Sound of Silence ~ with an exciting pd breakthrough mixed into it — small girl with parkinson’s

I’m right here……

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invisible

Posted a video some weeks back, something completely out of character for me and I’m still dealing with the reactions. However, I’ve never heard this statement before and I told him same; “Oh yeah! I saw the video but I thought you were acting a drama!”. No, I’m not kidding you at all. In continuation, “it was when I saw the comments from other people that I went back and saw I had assumed wrongly!”. Honestly, that brings mixed feelings, do you laugh it off or take the time to explain? But the question is, when taking a walk on the beach, do you stop and ensure all your footprints are covered. My hilarious buddy, Uncle Donut inspired this post and maybe with his permission, I’ll include to his video. A truly amazing guy whose resilience also inspires me.

What’s going wrong with the world and its occupants? I’m right here! I can see you and I know you can see me, I can hear you and I know you know that too, I can also talk and just in case you’re assuming I can’t talk, we just exchanged pleasantries!!! I’ve had people say hi, return my smile and then stop Joiv and ask “why does he use a cane? Is he okay?” Hello! I’m 5’11”, 200lbs, a redhead with freckles and people say I dress like a Brit (a particular category I’d believe cos I’ve seen my fair share of Brits with saggy pants, comfy with puke all over his shirt and totally inebriated), speak fast and have a carribean twang in my talking. In summary, even if I try to hide, I’m pretty easy to find. So “hey! once again, I’m not Harry Potter, I don’t have a cloak of invisibility (and if it does exist, I probably might have some difficulty standing and trying to conceal myself while standing.)

The other day, I came across an elderly couple on my way to the pharmacy to pick up my medication and after saying hi to them, the lady asked the pharmacist, “why are you asking him if he’s taken these pills before?” Ummm! I’m right here” and if you think it might be rude asking me then just begin by asking me if I don’t mind you asking me a question. I don’t mind and I’d really prefer to do a 360° with the shopping cart in the mall or dance to the music coming through the mall speakers if I could so that I can also prove to myself that I’m real.

I really think it’s time to start testing myself in weird ways because why bother to send out or accept a friend request on social media if you don’t plan on having a conversation. Why bother spending seconds (incase you’re a fast reader with a 180 IQ) reading a post or an article and just leave without reacting or leaving a comment. I mean if there’s some super spy agency that requires those ‘skills and has very good health insurance coverage, please sign me up as fast as you can, I really would appreciate some financial rewards for being nonchalant.

Okay, let’s back up a little here – I just added “I want to be invisible and get paid for it” at the top of my list. I sure would like to eat a banana and wrap it back up with duct tape or prise open that can of pistachios and take a handful, oh I do love yogurts but since they’re not sealable, I’ll probably just put it back empty on the shelf…..walk right out the mall and drive home. I actually feel today’s grocery shopping should be on the house because if you’re polite enough not to see me then I guess I should return the complement. Why embark on a fact finding mission of looking for your car keys while you are driving? There really must be something I’m missing here.

Anyway, I think it’s time to actually become invisible and that also applies to you dystonia, “go stand in the naughty corner!” Are we really being polite or just becoming more nonchalant because I would really love to sit naked on the beaches of Tahiti, sipping on some carribean juice rather than being ‘not seen. If the price is right, I would love to supervise the pilot in the cockpit even though I know nothing about flying. Or better still, walk up to that horse and ask him to scratch my ears. What? We’ve both got ears, why should he always be the one who gets the scratching done? Lord! All the things I would qualify for by being just invisible however I’m not and so please don’t be offended if I’m unable to not be invisible.

Ever been to the dealership to have your oil changed and 30 minutes after you’ve handed over the keys, someone walks up to you and asks you what you are doing there? Oh no, there’s no reason why I should get offended, ‘I couldn’t find an apartment to live in so I’m currently residing in the dealership’ and while you are at it, ‘could you please get me a cup of coffee and some cheese croissants?’ It’s just outright amusing when the ostrich’s idea of hiding is to bury its head in the sand, the huge derriere will just blend in. So please when next you see me, remember that I’m perfectly capable of seeing, hearing and talking.

Nobody aspires to be a nonetity, that is not a career choice in any part of the world except the mall on Mars has job openings. I recall my first and only psych evaluation after being diagnosed, he sent me a copy of his report and I wrote him a letter attaching his report and politely explained to him that he would probably fare better as a zoo guide because the animals don’t talk but I can and yet nothing in his report related to all that I said to him. I guess it was the luck of the Irish that got to him, so an amicable parting and some extra quid in my pocket was really a good deal.

Now let me go get some duct tape for my eyelids tonight because desperate times call for desperate measures!

ללא שם: בואו לא נהיה עייף עדיין, עדיין יש קצת אושר שם בחוץ!

Adios!

Be Strengthened…..

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A friend recently commented on how emotional she feels when she reads my posts and uncharacteristically requested that I write a happy post. Happiness and Sadness, Joy and sorrow, Riches or poverty, life and death….these are like the two sides of a coin. It is what makes the balance in life, knowing that no matter how thin a slice of bread is, there will always be two sides. “Even though I walk through the valley of the shadow of death” is a declaration based on divine revelation. Many would, if presented with the choice, probably opt not to go through that valley but you cannot be whimsical about the order of things. Like ill-mannered kids, picking only the good stuff from the bag when it gets to our turn to pick, you just cannot eat your cake and have it.

Now this is no dirge or eulogy, this is simply the musings of one who has, not by personal choice, being given the opportunity to reach out and touch lives. Sometimes my feelings want to conflict with purpose but not anymore, as long as this heart beats and there is breath in my lungs. I have not yet had the wondrous experience of walking the streets of gold in God’s celestial city but what I have is the opportunity of witnessing how trials bring out the best in us…..when we do not collapse and keel over in defeat. This is not a journal of every pain and sentiment I feel since I got diagnosed with dystonia in 2012, it is almost impossible to do that – how do you describe accurately the feeling of helplessness as you watch everything that you thought was you being stripped away? How do you chronicle the sheer frustration of trying to rebuild a life from the rubbles or pen down the emotions that well up in you as you are faced with medical bills without knowing how those bills will get paid? How do you narrate the disappointments that come from being told you cannot do this by your own body or illustrate in clear terms that the way and the will are two different opponents that must be conquered concurrently? The proverbial town crier might regale in the sonority of his voice in the stillness of the African dawn but when the market is at its busiest, nobody needs to tell him what an exercise in futility it would be to cry out a message.

Money answers everything but what good will all the wealth of the earth amount to when you are confronted with situations that transcend the realm of physical riches. This morning, I answered a knock at my front door and there stood a delivery lady (slightly dampened by the early morning shower) with a huge envelope. Tucked inside the envelope was one of the prettiest handmade card (the largest I have ever received or thought of making) with the words “Be Strengthened” boldly inscribed upon it. Beautifully crafted between the covers of the cards were signed handwritten notes from several of my College/University mates, twenty names in total, if precision means a thing to you as it does to me. Just a few minutes before that I had hung up the phone, thoroughly exasperated with a call agent because she explained that my phone line would only be restored if a specific amount (to the cent) was paid. Opening that card and reading every note contained in that card was quite emotional because these notes were from my mates, now scattered all around the globe-most of whom I haven’t seen in the last 17years. Hold on just a second, if you may please, almost simultaneously I got an email informing me that my PayPal account had just received some funds from these guys who I know have their personal issues to attend to.

I have always loved surprising people, I would rather surprise than be surprised because the logical and analytical part of me usually categorises surprises as something akin to reading a 300 paged book; but commencing at page 85 and ending at page 200, or a shirt half tucked in (in itself, a very glaring and incomplete design, entirely unsatisfactory and requiring me having to work my way; back to page 1 and forward to page 300). Oh yes, I do have mild OCD, so that really can be aggravating at times and so I tend to tell people right off the bat that I do not like surprises! Juxtaposing mild OCD and dystonia is a chemical equation of horrifying  proportions, it almost always have a disastrous result. However I have learned to change what I can and force myself to walk away from what I cannot change (the walking away part is really difficult but in order to prevent triggering an episode, I must walk away). When you find yourself in certain situations, you must quickly adapt or face the option of getting steamrolled, that is what I have learned on this journey with dystonia. There is so much I have had to learn in order to adapt – I have learned that faith is not just a word, it is a lifestyle. Love is not a word, it is an action. Sacrifice is not just an action, it is a painful decision expressed through actions that are quite unsavoury. And that giving, especially when you have to deprive yourself of something, has a longer lasting benefit than the extremely short high of receiving.

I have learned that worrying only extends inconvenience, all activity and no progress and so being told that I am a source of inspiration by men and women from different origins, categories and location is something that is extremely humbling. All I aim to do with each new day is to make someone else’s life and struggles just a little bit lighter even as I struggle with dystonia. Proclaiming that even though I cannot control the storm, I can smile even in the darkness because the strength to go through each day is not mine to dispense, it comes from an inexhaustible Source. All I try to do each day is choose to stick with the design that He has laid out for me, I choose to acknowledge that even when it seems like the ominous winds of life is about to snuff out my candle light, He is still there with me. I choose to acknowledge that even though I am about running out of resources, He has promised to supply my every need and so I have learned not to bother myself with how or when because He always shows up on time.

I am particularly grateful for the immense privileges of sharing paths with men and women of such incredible potential, purpose and focus. Grateful for the recent opportunity to be in such awesome support groups, because with every life I have been blessed to encounter, I have come away with truths that truly liberate – truths that are so deeply engrained in the entirety of my being that even when I am knocked down, I know that there is but one option available – ‘Pick yourself up and press on!’  For the bonds of friendships that have stayed true and the accepting hearts that still receive me till this day. The true description of fulfilment surpasses Rupees, Dirhams, Pound Sterlings, Dollars; it lies in the ability to allow yourself become a vessel through which someone is blessed because when the time comes for the curtain to drop, no stack of gold will prevent it from dropping. For those, who like me are struggling through their own storms, I encourage you to share these words with me, ‘Be Strengthened!’ No life yet created was ever created to be confined to the dumpsters of failures, despondency and hopelessness; your life is no different.

And so, as I reel with gratitude from the sacrifices of these few and others who have refused to just be bystanders, I just want to say that every penned or spoken word comes from deep within my heart. Knowing that we are all on a journey, and as you press on and still choose to give freely even if you are yet to get the spelling of dystonia or insomnia or myoclonus or Parkinson’s right, realise that “there is that scattereth, and yet increaseth; and there is that withholdeth more than is meet, but it tendeth to poverty.” – Proverbs 11:24. Within our hearts, desires lie; noble and pleasing but if we refuse to apply our hands, then we amount to nought but mischief makers, truncating the cycle of life. A soothing word, a little prayer, a look of genuine concern, a little token of compassion; these are what should define us as humans. And when a need is seen, do not first concern yourself with the genealogy but rather do something about it, because if you can see the need then you can do something about it even if reality kicks you in the teeth about your lack. Our lives are more than just a string of academic and professional titles, they are more than the string of mansions and stockpiled gems, they are easels that God uses in writing out a message of love, hope and perseverance to those around you.

Do not bask in the euphoria of your acclaimed fame and status because that in itself is no purpose, do not delight in the flurry of high-falutin verbage because that in itself is no purpose, do not pride yourself in your finely honed skill of bashing people with your beliefs because religion is just a word and not a purpose. Instead I choose to awaken myself each new day with a thankful heart for life and another opportunity to make the day count. Remember ‘Be strengthened’ might just be two words but the value of those two words are beyond the grasp of a life that is devoid of purpose.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

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!