When the Music Fades…..

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Fading Away…

Two days ago, my brother and friend committed the earthly remains of his wife to the ground. And it’s still a shock to me however that’s the fact, she who I asked after a week ago is no more and with a voice weary from pain and sorrow, my brother acquiesced that regardless of circumstances, we are strengthened by God. With God, there’s no limit to His Strength reserves however in times like these, I’m quickly reminded of how fleeting life is. Now, the future belongs to Ben and his little kids and moving forward isn’t an option but a choice to be made even amidst the grief and sorrow.

Being an ardent believer of faith, I cannot describe the deluge of emotions he’s going through however I can do something, and that’s be a friend and brother. We were not created to be in isolation however without a complete grasp of what our purposes are, we must trust Him who made us and keeps us grounded to things that though transient in nature they may be, yet the spiritual connotations are immense. The reality that is gradually being eroded in today’s world is that we have juxtaposed two parallel truths; we are spirit beings on a human journey and not human beings on a spiritual journey. Our destination determines and influences the choices we make because it does not require a degree in theology to acknowledge that to this life we live, there surely is an end and to every end a beginning. The question therefore is where and what are our priorities?

Having lived with dystonia myoclonus for nigh on a decade, my life’s journey has been nothing short of a roller coaster of miracles however still I press on disregarding what today’s circumstances are saying. Life is fleeting, measured in moments and therefore it is befitting that we use the temporal to secure the permanent. With each waking moment, I ask myself, “what if it is today?” and that I assure you greatly assists me in prioritizing. Be it in little gestures of kindness and compassion, a life is touched with joy and a journey continued with hope. I therefore find it rather bemusing when I see a need that has passed through lots of people but yet remain unchanged, and when it eventually grabs my attention, rather than pass it forward, I try to ensure that it doesn’t remain the same need when I received it.

What’s the wisdom in gathering what is temporal, intentionally ignoring the needs of those around us, only to leave it all for someone else – sometimes people we never knew. I’d opine that’s a question best asked and answered individually. Recently I marked a milestone in my life that many haven’t, and the amusing thing is that I wasn’t stressing myself out and so what a delight it was. A gift unexpected but really needed. To share something ongoing, we embarked on a funds drive for a school project and this necessitated soliciting for contributions. One remarkable thing I’ve learned on this dystonia journey is that life is as unpredictable as the weather. Yes, you can make forecasts but more often than not, the forecasts are not always spot on. I guess then that the unpredictability of man is something that should be no surprise to us however it really hurts when you get doors slammed in your face. It really is inconsequential whether the door was shut politely or slammed rudely, the truth is disappointment doesn’t really have a closet full of attires.

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It,s just a door.

Pretty certain these responses are not strange to many, “I’m sorry, I’m currently not in a position financially to help!” but the stranger thing was I got this response from 3 people who do not know each other, live on different continents and are almost at the peak of their professional careers. Was I upset? Definitely not, because I’ve learned that we (not me anymore) earn to make a living but we give to make a life and so for me, I always choose to make a life by giving from the transient accessories of my journey, no matter how scarce they may be. Just like attending a concert, we have let ourselves become so dialed in focusing on the performance that we often forget who is just by our side. No matter how long the concert lasts, there will be a time when the end is nigh and the music fades. After that, we must move on or remain trapped by choice at the wrong location doing the wrong thing.

The most inspiring people are not those measured by society’s definition of success but rather those who have consistently used what they’ve been blessed with to bless others. As I horrifyingly witness the inevitable slide of humanity from the core values of yesteryears to something that can only be described as inhumanity, it simply expresses how easily we have forgotten who we are or who we were meant to be : to shine light in the darkness, to sow peace where strife exists, to love when we feel the least like loving; that almost summarily in one broad brush stroke describes what our lives should be.

Do I write from a place of resentment? Heck, no! There’s barely enough room on my plate to actually take the best care of myself and medically speaking, going down that route bodes nothing but ill-will for me. The beautiful thing about faith and trust is that we push ourselves to heights previously unattainable and see things from a completely different perspective. It has never been about you; casting doubts and fears away so that we are unburdened and ready to walk our path with nothing but trust in The One who made us. To many, it might seem foolish but remember the music fades at some point and beyond that, there’s little left for us to do. What we did is what will matter and woe betides the man or woman who fritters away the future for today’s pleasure, despising everyone else that doesn’t fit into your carefully selected category.

It is sheer wisdom to realize that what matters the most is not what we receive but rather what we do with what we have received and so I opine that keeping this fact in front of us will inadvertently put us on the right path. Even as I grieve alongside my brother, I am confident of this fact that He has not brought us this far just to abandon us and when it seems like I am abandoned, that is when I know that a transition is on its way and so my job is to brace myself and keep pushing ahead. “Tough times are inevitable, and this is a fact many of us don’t actively try to face. But if we recognize that we are capable of doing so, and we are prepared in our attitudes and philosophy, we can grow as people and go on to push the boundaries and experience a richer and more fulfilling life.’

Let us remember that “Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.” – W.E Channing

עד שניפגש שוב, מי ייתן וcountenace יזרח לטובה עליך!

Adios!

Landmarks, Milestones and Trails…..

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“It is not power that corrupts but fear. Fear of losing power corrupts those who wield it and fear of the scourge of power corrupts those who are subject to it.” – Aung San Suu Kyi
I could spend hours dwelling on the ups and downs of life’s unfair paths however it is more beneficial to realize that we are a product of the choices we make regardless of the position we find ourselves. There will always be seasons but the longevity or the brief span it covers is something that we will never be able to control and so it makes common sense that we utilize the seasons to the best of our capabilities.

Within the brief time I have been blessed with, I have known lots of extremes; I have hosted and dined with royalty and nobles and I have huddled together with the hungry for warmth and together, ushered many sincere prayers for security and a hot meal. I have experienced the vitality and exuberance of youthfulness and also known the despair of learning to be dependent on others. I have known and experienced the short-termed high of opulence and also known the despondency of acute lack staring me in the face; an unwanted but inevitable companion. All of these I have since learned are the signs and milestones of life’s journey which we all take irrespective of who you are. I have experienced the wisdom of being a lender as well as the painful lesson of being an ignored borrower. In all of these, a truth stands clear – there is great wisdom learnt in the house of mourning.

Trail

Trail

I have on several occasions learned to ask myself if I was acting from a stance of courage or of abject fear, and the answers have always varied but what remains constant is that there will always be seasons and the choices I make in those seasons determine to a very large extent how quickly I learn the lessons for that season or how patiently I must wait to ensure that my teaching is effective and the feedback appropriate. Life will never be all roses or all thorns however the beauty of life is that even amongst the dying embers of a funeral pyre, a phoenix can emerge. The fragrance of the roses will always waft but woe betide those who in abject ignorance believe that it is theirs forever because that in itself shows a level of understanding utterly ludicrous in itself. Dynamism will always be inevitable and learning how to break a fall whilst in the safe confines of a trampoline in your back yard is an endeavor that will never be regretted.

The beauty of life’s journey usually lies in those moments that will forever be etched on your memory; some will be cherished forever whilst others will be termed experience because of the searing hurt that came with them. As I write, I recall vividly the number of times that I was surprisingly blessed as well as those moments that I was left with my jaw on the floor, stunned beyond words. Dystonia and Myoclonus will be landmarks on my sojourn however inasmuch as it was a transforming moment but in comparison with events like being a Christian, becoming a father, a lifetime companion, it sort of pales into insignificance. Now being able to carefully balance life scales is a skill we learn as we navigate life because the choice to focus on the dark moments as against focusing on the bright moments and looking forward with unquenchable hope to getting to our destination is one that is personalized. The destination that is charted by our purpose on earth should be the star that shines through even in the darkest of nights.

I recently had to weigh in on a trending situation about faith and religion, and trust me, I try absolutely to make my stance clear. There is absolutely no points scored in kicking one who is already down neither is there anything vaguely resembling authority when you hide behind the innocuous threats of a past life in order to pillage that which you are supposed to be watching over. It bothers on the absurd when you manipulate lives that should be influenced by you, and then strip away the dignity and glory from the innocent lives that you can reach. Choosing instead to trample and flaunt as against encouraging and building, the truth associated with that is there will always be a time of reckoning, that is something that is a certainty. In that era of accountability and reckoning, nothing of material value will hold any worth but what transcends every arena is the compassion, kindness and assistance we apply to every situation we find ourselves.

Landmark

Landmark

I recall with a degree of humor, how many people have literally tried to stump me down because I made a choice to be vulnerable with them. I am still standing and the truth is that whilst my bouquet of medication might soar in price, my trust in God soars even higher. I recall these words; ‘What you make (or receive) is an earning but when you give, you touch (or make) a life.’ Now the question so erroneously ignored is that what you earn is entirely yours to do as you please but how and what put the field out there for you to earn from? I am still nursing a damaged rotator cuff because getting it repaired has just not been affordable but I have neither forgotten those who gave of the little they had nor those who chose to ignore. Infact I will always remember how easily man forgets his beginnings and with the headiness of strong liquor, gives because others are giving and then turns around and demands that he be refunded as the liquor bars and the stripper poles are of more value to him. Ignorance? Maybe…..nonetheless when we can bless but through indifference want to curse, we forget that we are spirit beings on a human journey – every action counts.

Do I have regrets? None even though it still is such an intense journey filled with twists and turns but what I can count on is that my destination is sure and each day, I obediently take one step at a time, knowing that His faithfulness is forever. It is almost a decade since I was diagnosed and never have I found myself on the road pan-handling or begging bread even when there was truly no bread in the pantry. Each year in its unfolding gives me a deeper layer of understanding what real priorities are and despite those scary times when the trail stretches unendingly in the dead of the night with no light to see milestone markers or landmarks, I cannot accommodate the thought of giving up. When the taunts of ignorant men, seemingly secure in their wealth, tend to hurt, I remember that even though sticks, stones and words might hurt me but the decision to get up and keep going is mine to make and mine alone. I may not have to give what you specifically request but what I have, I have learned to freely share because not only does it lighten my burden and brighten another’s day, it also frees up room for wisdom to guide me through my journey.

To the many companions and helpers raised in my path, I will forever be grateful because giving is a sacrifice in itself and someday the return on that sacrifice will blow your minds. To the many who choose to be ignorant and believe they hold all the chips, thank you for the lessons in humility and enabling me not to acquiesce to desperation. These are not just fancy words but the expressions from a heart within a battered body, candid and sincere and to all those who feel they must succumb to desperation, despair and despondency in the light of the many who have refused to help, note this – the race is never determined by how swift you are or the victory on the battlefield determined by the strength of an army. As long as you choose each day never to give up, you are chalking up points where it counts and being a beacon of light to the weary, oppressed and downtrodden all around us. We can never change the world but we can change a life, so go ahead and give a lending hand to that outstretched arm and if that is all you do, be content and press on.

Remember, “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” – Leo Buscaglia

עד שניפגש שוב, מי ייתן ובהירות ארשת פניו תמשיך להאיר את דרכך ולתת תקוו

Adios!

Walk with me awhile……

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Please walk with me….

“We learn something from everyone who passes through our lives. Some lessons are painful, some are painless…but all are priceless.” – Anon E. Moss

There is the familiar story about not knowing contentment in life that has birthed the age old idiom, ‘the grass on the other side always looks greener’ and sometimes we actually and with real intent blur the lines differentiating reality and our fantasies. However life with inevitability brings us around, sometimes dragging us on our butts to acknowledge that there is more to life than positive talk, reciting mantras or forwarding stuff that has a silly condition at the end. Yes, we are saddled with responsibilities every day that we arise but when we align the fact that our being alive today is simply a reaffirmation of the truth that God is not yet through with us then we can truly be grateful for the many blessings we receive (and oft take for granted) or else why are we still here? To live is Christ, to die is gain is a very weighty statement but that is simply truth in its plainest form.

A couple of days ago, I actually felt that I had touched the gold paved cobblestones of heaven because unfortunately the past few days have not just been torrid but have been progressively chronicling a decline in my health. Six months ago, I had a bad fall and sustained significant injuries to my right shoulder (rotator cuff) and just having to deal with myoclonus each day is a full-time career on its own, adding a torn rotator cuff was just adding more to an already overflowing bowl. With the same doggedness that is characteristic with faith, I continue; choosing every day to be thankful for something at the very least. Against what I term my fundamental values, a friend set up a GoFundme campaign because in his words, sometimes we just have to let go and let ‘friends’ and others help. After the dismal campaign ran for a month or two, he had to shut it down as requested by me because we do not decide the paths or channels from where our relief will come from. It is and will always be about His timing – He does make all things beautiful in HIS TIME!

Being the proud father of an amazing daughter, whose life all on its own is simply a testament to God’s sovereignty, I am more than just a soccer dad. Despite the frailties of this body, I tend to want to push the envelope just a tad more. Well, the fall was a result of attempting to push the envelope and even though she bosses and fusses over me, I still know that there are a couple of things I can still do because our children are the best gifts that Heaven has in its store and so I am never going to let a white flag hang from my doorway with regards to issues pertaining to Heaven’s precious gifts. Again, I am a firm advocate of taking care of your body but sometimes it is easier said or written and most times it just goes awry however it is either of two options – Let go entirely and Let God or delude yourself into believing that you have when you truly haven’t.

Well I am still a work-in-progress and tenacity still means loads to me, but ironically where that tenacity is applied also matters. Against plain common sense, a couple of days ago, I dropped my cane in a bid to help her during her training and that was like a culmination of everything bad – the lack of sleep, the rigors of just being fairly active for consecutive days et al. During the night, I was seized with the most severe episode of dystonia – tremors so intense that the king-sized bed was literally absorbing and trying unsuccessfully to contain all that energy, pain so intense that curling into a fetal position did nothing to help, tears of utter helplessness cascading down my cheeks as I prayed believing it was my last along with that scary feeling that I tend to describe as my brain over-heating because as always it was doing the processing and still firing away on all cylinders. I remember telling myself that this was what the end feels like….

….definitely one of the worst storms but from force of habit, I clung to every promise that applies to me – knuckles whitened from clutching hard, I was able to ride out the storm not by my own strength (that really does not mean so much to me anymore) but because my story is yet to be concluded. In retrospect and as I continue the long and difficult task of recuperating, I bear no angst. No hard feelings for those who in their ivory castles feel comfortable and secure. No hard feelings for those who believe that it is a fair trade to copy and paste a prayer as against doing something more tangible. No hard feelings for those whose ignorance make them all the more ludicrous, no feelings of resentment directed to the world because I know that what doesn’t kill you only makes you stronger. And even though the furnace be stoked more than usual, I choose to be hurled without a fight into the fires confident that God’s got me; acknowledging that His ways differ from mine and so I know that salvation will come.

Salvation not by my own understanding or standard, but rather salvation as dictated by Him with the end result being that I will emerge at the other end so much better than before the journey through the fires. And whilst the waves billow high and angry, and this vessel gets more battered, I choose to make each moment count. Regardless of the darkness that creeps like a smothering garment blocking out the stars of the night, I know that there is still going to be light once this night is over. And so I hold on, not because of the medication that miraculously never completely runs out (even when the funds do) or the fact that there will always be help raised up on my behalf, but rather because I know that there is that one life that will draw a second wind to continue pressing on just by reading my story. There is that one life that was just about to succumb to the darkness and let the little light be snuffed out, that is why I hold on. For every point I get to on my journey, I learn some more and apply that faith that recognizes not only that He exists but that He is also with me through it all. He is more than the worst of storms and withersoever He leads, I submit.

For as long as this breath courses through my lungs, I choose to be a pineapple, standing tall, wearing a crown and being sweet on the inside. Remember that you cannot start the next chapter of your life if you keep re-reading the last one.

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

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!

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!

…treasure in the trash!

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Image result for tossing it out

Life, like I constantly say, is a journey and like every other journey, it has got its fair share of twists, curves, bad patches, lonely stretches and quite a few ‘unprepared for’ events that occur. Most of us start out in life believing what we were told, not necessarily because we experienced it and so most times when we have our own unique encounters, it almost seems as though we probably might have been served a slightly garnished portion of truth. And then we go into those dreadful places where we think the isolation will take away the pain, but in all fairness, the process of living encompasses the good, the bad and the ugly. What we decide to run with will always be the choice we make, regardless of whether it was ‘an uninformed’ choice or not.

It is so seared in my memory, that I think it probably might show up on an MRI scan of my brain, the very moment when I was about walking into the consulting room of one of the most brilliant neurosurgeons in the world. I do not know if we each have those moments where everything seems to be perfectly captured in a still shot. Photography has always been and will always be a hobby of mine and where I defer from the modern world of perfect shots is in the fact that the best shots are captured when the subject is least aware of what is taking place. I do remember that was the very first time of ever hearing the words; “this is dystonia….it is a rare and incurable condition”. That I did not gasp was not about proper conduct or the presence of my kid sibling, it was me reverting to my default setting, applying sheer will and the relief of finally getting an answer to the myriad of questions that had been plaguing me

Till date, I remember the side glances, usually of pity as I struggled to teach myself how to still make the best of life. I still remember the words barely concealing their unbelief but very transparent in their lack of support when I really needed it the most. However we go through life, never really understanding why we pass through situations until it finally clicks that it was all in preparation for this moment decades after. Being the 3rd of 6 kids, I learned at an early age that being in the middle really puts you in a bit of dilemma – you are either too young to hang out with the older ones or too old to hang out with the younger ones. And so I learned how to make my life count for something that I would value as against attempting to fit in. This choice has actually made who I am and till date, it is a daily habit – choosing how to see a completely different perspective of any circumstance.

Nobody is born great, if you want to be different, you take the tools at your disposal and work at being different. That, I can assure you is not a walk in the park because in the park, everyone is doing something, some are seating, some are cycling or walking, some are feeding the pigeons but everyone is there for a unique reason and some of those reasons might conflict with yours or compliment yours. Now I am yet to ever go to the park because I want to engage in nothing, that is akin to saying that standing still makes time stand still too. It never will, and so every decision we make either propels us forward or drags us back. I have also learned that nobody can ever walk in your shoes and just like my daughter was telling me that her running shoes were getting tight, I have to choose to listen to her because it is about her feet and the comfort of wearing the right fit, besides she cannot wear mine anyway.

At the onset of this battle with myoclonus, I chose to read and digest every snippet of information I could lay my hands on, not for want of something to do but because I knew that choices would abound and so I needed to be ready to make the choices that would be for me not for my neighbor who could bound up and down the stairs 10 times faster than I would do in just one solitary trip. I learned that there was no shame in asking for help even though I struggled with pride and ego (two things that if not properly categorized would do you in). I learned that even though there were times I could barely afford it, I needed to make my regular appointments with the team of medical experts that dystonia calls for. I learned to listen to my chiropractor talk about new approaches. I also learned that if it walked for Nichol, when he gleefully talked about it in our National Dystonia Society meetings, it was not necessarily a green light for me. I learned that I needed to embrace reality in order to discover newer ways of doing old things.

As I write this, I remember painfully chronicling every head trauma that I had ever experienced. I was not resentful that of 6 kids, I was the only one who had been dealt this card but I would on occasions ask myself if my parents had missed something or I had downplayed the concussion I received in several unrelated events. Faced with such a barrage of questions, it sometimes felt that even though I pride myself a good swimmer, I was in waters that were too choppy to swim in. The ultimate question was what was I to do with this deck of cards life had handed me, continue to look for something to blame or look for newer ways of continuing on my journey. I realize now that the symptoms were always there but just maybe, I did not really understand my parents’ when they said ‘keeping an ailment a secret could cost you your life’ and that ‘hiding ailments is an exercise in futility because the ailment will not return the favour’.

Nothing emerges from the furnace unchanged, and so with every painful burn and relentless bouts of pain, I knew that there was only one person God had given the responsibility to call for a change in game plan – Me! And so the process of embracing dystonia began, not as I embrace friends but so that with each new day, I would continue to forge new ways to go on. I am thankful for the family that God has brought around me, thankful for the international calls, care packages and the best friend who might not be aware of how much of an influence the relationship has aided me. Honestly, being bull headed and direct is definitely not the panacea to every situation but for this battle, I will choke down the pain, stave off the waves of despondency that being in need always brings and just choose the perspective that gives me the opportunity to see the glimmer of light regardless of how tiny it might be.

I remember how it feels giving a baby his first bath at your hands, you just cannot give room to all the fears and doubts that anxiously await. Do what you have to do confidently because if you do fail then you have just learned another way of not doing it. My response to ‘how are you doing?’ will always be “it is a brand new day and for that I am thankful!’ and when events muddy up the water, I will find the strength to toss it out lest it festers and becomes more debilitating and hazardous to my well-being. When I stare at my medication holder, and wonder when it became a part of my dressing, I remind myself that time holds all seasons and this too is a season. When the bills pile up and the notices flood in, I remind myself that worrying is so much action but with so little relevant movement. Today is a new day, out with the old and in with the new!

Remember that the best gems are found deep in the dirt and so deep within you lies a treasure of inestimable worth, but you do have to do away with the sneering glances, the spiteful looks, the scathing comments and get it out because that is what is going to make your life journey more purposeful and meaningful to not just you but to every life that you are privileged to encounter.

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

Adios!

….A Night’s Chronicle

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

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

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

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

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

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

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

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

Adios!