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!

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!

The miracle of brokenness……

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Broken but not alone!

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

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

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

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

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

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

 

When the words dry up….

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

A Dry Fountain

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

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

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

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

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

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

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

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

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Rolling the boulder….

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It is indeed amusing whenever I chance upon kids playing pretend and while it does bring back good memories from my childhood, it also provides a brief glimpse into the fascinating and developing brain of children. It is such imagination that gives them that unique childhood boldness that they can do anything they set their minds to. Now many might have more picturesque childhood memories but I can only give what I have got and even though it does not amount to much, I am definite that it amounts to something for someone.

A few daye ago, I was warmly invited to attend the high school graduation of my niece and I was just as proud of her as I was of her sister when she graduated from middle school a few years back as the salutatorian of her class. I might not have competed with the screaming of family and friends as names were being called out and diplomas handed out but I was screaming all the same on the inside. There is something distinctly rewarding to us parents when we witness the next generation take the bit between their teeth and run with it determined to make a name for themselves. Now in both instances, I expressed my pride in both of them because they are both uniquely different and have their unique strengths and flaws. As salutatorian, she moved onto the next phase which is high school and her sister is moving on to college with a partial scholarship….I couldn’t be more honoured to witness the transition as their journeys unfold.

As we gathered to take pictures and the like, I brusquely waved away my sister’s apologies because she revealed that my niece had vehemently insisted that she did not want any graduation party. Now, I was surprisingly thrilled by that piece of information because it displayed consideration (by the way, I was not the one tasked with throwing a party) and awareness that this was the end of one phase and also the beginning of another. I remember back in our days, you finished well because it was what was expected of you, there were no parties because it was your life that you were laying out and so it is somewhat mildly disconcerting that today certificates of participation (what else were you in school for?) are greeted with the same fanfare as awards of academic merit. Congratulations are in order however the attainment of a milestone only brings you closer to the goals/destination you have set in mind, and therefore there should be an eagerness to commence onto the next phase.

I conceded a few nights ago to my daughter’s persistent request that I tell her some of my childhood stories especially those that occurred about the same time I was her age. I remember my father tasking myself and my elder brothers to attain a minimum overall average of 85% (if my memory serves me right) as a prerequisite to getting a prize. And I remember how I threw myself headlong into the challenge because there was something tangible to be obtained, I did not know what it was but the mystery served as an added incentive. At the end of the term or year, I remember being handed my first ‘adult’ wristwatch as the reward for my academic performance. It was a stainless steel, bracelet Seiko wristwatch and I remembered how fascinated I was because it was not the digital version that was popular back then, it was fully manual. I remember prising the back open just so I could see how the insides looked; the tiny gears, the shiny links, the shiny spring but most fascinating of all was the oscillation of the balance wheel. I remember winding the knob, releasing it and just watching the balance wheel as it swung back and forth, keeping time in its passing.

Unfortunately, this story does not have a happy ending because I remember not heeding the hint not to wear it to school but how would my peers know of it if I did not flaunt it and so I did. Now although I was fascinated by the mechanism of the watch but I was also careful not to damage anything. As expected, curiosity killed the watch because my classmates did not share the same boundaries of curiosity tempered with care that I did and so one day, someone put in just a bit too much of a force in examining the balance wheel…..and ‘Humpty-Dumpty” could never be put together again. Naturally, I reported the watch “stolen” because I knew that no excuse would outweigh the consequences of disobedience and so I mourned alone. That experience taught me a life lesson; people can never take care of your affairs in the same way as you would, applying just the right measure of brevity when needed or the right measure of excitement as and when needed.

For today’s world, expensive gifts are doled out when the recipient has no idea as to the value of the gift or the cost of obtaining that gift. We are left with a society where history is best confined in history books as we try to give our children what we did not get growing up. We completely forget that just like that balance wheel, there must always be that balance in life for there to be successful continuity. We completely forget that truth requires no adjective, and whether we choose to believe it or not, truth will always bring about liberty. Any human with a capacity to speak can tell tales of freedom but experiencing freedom is as rejuvenating as getting a cool drink of water at the end of a marathon. In our journey through life, we are often faced with boulders that obstruct our vision of where we are going to and it is only by sheer hard work, determination and persistence that we are able to move aside those boulders. Some boulders are so huge that we had better apply the right amounts of effort in the right direction, with knowledge or watch in abject dismay as the boulder leaves a path of wanton destruction in its wake.

That is one of the lessons I focus on in passing to my next generation. Nothing of real significance has ever been accomplished without the efforts, dedication and sacrifice of a few. I choose to be among those few and if I cannot, then I choose to uphold the liberty borne out of the sacrifices of those before me. The ability to prioritise rightly is something that will always serve you in good stead or else your exertions and hard work would be an exercise in futility. Realising that in order to continually breathe the rejuvenating air of freedom, we must hitherto exercise our fair share of sacrifice and dedication because we stand where we are, based on the actions of those before us and therefore the responsibility to leave behind something worth building upon is essential. It is our responsibility to pay it forward!

On Sunday, I learned that the spiritual reality will always triumph today’s physical impossibilities, however you had better know what spiritual reality awaits you or else you will be swatted away by the crashing boulders of today. I realise that with the definite knowledge of my spiritual reality, I dare not give in to the seemingly impervious impossibilities of the present. Yesterday is history, today is the present and tomorrow a mystery and so how would I dare hope in tomorrow’s mystery if I am completely blinded by tolday’s obstacles. I know with unerring certainty what my spiritual reality is and hold onto it tightly because the relentless crashing of boulders from yesterday’s mistakes bode no good for me. Notwithstanding if my time runs out, I want to press on against these boulders and if need be, go out with taut muscles aching, teeth clenched, rivulets of perspiration running down my face and with my last breath, a roar in defiance because I refuse to give in.

Remember that there’s so much to life than meets the eyes however we had better be sure of our destination or else we miss it even if were dressed in glitz and glamour.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!

Between two cities…..

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In the course of my remarkable journey through life, I have been blessed beyond measure by the number of lives that I get to encounter. And when I use the word ‘encounter’, I mean it literally – at train stations where there are no escalators or elevators. The chap giving up his seat on the morning train while people are still trying to complete their quota of sleep in an insane bid to multi-task. The fruit grocer who tells me to have an extra pound of grapes even though I just have enough for only one pound. The Procuring officer who, without a hint of irritation in her voice, logs in an extra thirty minutes (off the books) just so I get there on time to finalise my business dealings with them. The charming lady with kids who insists on helping me with my shopping despite my clamour for chivalry. I could list complete strangers who just by their actions with no regards to any form of obligation or brevity of time have become contacts on my phone book. Most of whom, I am fully aware, will continue dealing with their own issues as soon as they get off at their predestined stop.

Those are the family of strangers that I belong to and within the time frame of our interactions, I know that they have inexplicably earned a paragraph, a page, a chapter in my life’s tale. Today, I look at my phone book and due to the insistent demand for independence by my neurological system, I have figured out new ways of getting hitherto simple tasks completed with the least amount of added stress to an already over burdened system. To every name, there is a face to match because just like I was explaining to my daughter yesterday about how the brain is a muscle, I had hitherto engaged in mental exercises that ensured that my memory was catalogued. I do not forget faces or names but with the unrelenting clamour  for autonomy by my nerves under the strong influence of dystonia, I have learned how much of an anguish it is when I try to engage in placing a face when I hear a name or matching a name to a face as we converse…….and so I just reinvent a new method of mental indexing to lighten the associated burden of doing things the old way.

Needless to say, I still remember, and when faces and memories ricochet in my head like a hastily fired off shot from the muzzle of a Springfield XD 3″ sub-compact semi auto pistol in a tiny confined space, I have learned the futility of trying to catch the bullet or limit its bouncing around. There’s no good result regardless of how much effort I make and so I just reinvent new methods. Still there are lives that so significantly interspersed with mine that I cannot help but just put them in a category much more easier to rifle through. Now I chuckle when I remember “there are many ways to kill a rat” because now, it’s so amazingly simple to just open the door and let the rat go find someone else with the energy to alternate between the many ways of ridding the world of just that one rodent.

Within the space of four weeks, I learned of the demise of two men (way past the prime of their youth) who touched my lives in so much different ways as their locations. Two continents apart, one life being the only common factor, mine. One preferred to get from me as much as he could even though he rationalised it by saying ‘it’s because of your condition I am even negotiating with you’ – when in reality, there was no respite applied. The other, was as open-hearted as I have ever seen anyone been and even when he struggled to remember the subject of our last conversation, he would still embrace me and plant a kiss on my cheek while propping himself up with his walker. He gave more of himself than I ever gave to him because when the twilight comes creeping in, we more often remember the givers than the takers.

In response to my enquiries, one passed away alone with no relatives or friends with him until he was discovered by one of his tenants. The other had nothing but a long list of lives he had touched with his humility, compassion and smile; who stayed with him till he transitioned with a hymn on his lips and a smile on his face. Am I in anyway trying to make light of the fact that to every season, there is a beginning and an end? Definitely not, but I still cannot picture how sad it is to exit the stage alone and unobserved by the rows of spectators who watch our lives because in all fairness, we are all called upon to play our roles on this stage of life. And so, I know that regardless of how poorly a role you might have played, the least you deserve is a slight smattering of applause just for showing up. However, my question is why would I settle for the polite applause when I can get a standing ovation, not in response to fame or my gaudy attire but in response to the collection of individual lives that were so impacted by our meeting.

When the final stage curtains are dropped and your role is done, what would be the response? Mere courtesy or deep hearted appreciation, I choose the latter every day and so my intent is not to run around like I’m in a game of tag (well I don’t run anymore) but to ensure that whether the duration of encounter is measured in minutes or by decades, I gave of myself both in cash (when it’s there) and in kind. It is so easy to gravitate towards the company of those who give than the company of takers but remember that you are the star character in your own role, and whilst you may delight yourself in being ‘smart’; there is something within you that is meant to be shared with others. “A man without self-control is like a city broken into and left without wall” – Proverbs 25:28 Of what use is a city without walls, how do you provide safety for those entrusted to you?

We are all cities; size, population etc might vary but a city is what you are, and so in this arena called life, what makes you stand-out? Handouts from your fully stocked cellars and granaries might suffice for a bit but when the curtain falls and your granaries and cellars are pillaged and looted by strangers, the insignificance of your handouts would suddenly become glaring and shameful. We are cities stocked for the long run, and giving is a sacrifice but sacrifices are not a hobby in any location I have been to during my sojourn. Though my walls may be in dire need of a fresh coat of paint, and my watch towers have slowly lost their glimmer, there is still something to share with that stranger who seeks solace in the shadows of my walls. Though the buffet table be removed and the fountains but trickle slowly, there is still enough to parch both our thirsts. Though my blankets have all but lost their fleece, and the chandeliers are but a spot on the ceiling, I know that the warmth of our conversation; true and sincere, will create memories never to be forgotten when the time to part ways draws near.

Remember that time never stands still, but even with its passage when the arms of sleep so tightly embrace, memories will always be created.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!