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!

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!