Constrained but not confined……

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constrained motion

Constrained motion…

It is just past noon and the sun is still scorching, you can literally see the heat waves shimmering off the road surface…..and even my favorite hobby of swimming is not as enjoyable as it is wont but then I still will enjoy it because change is not solely defined by geographically location, it is to me a myriad of definitions depending on the present circumstances that surround you. This hopefully suffices for all those out there who want to know if I have ‘relocated’. “To struggle and to understand. Never the last without the first. That is the law.” George Mallory

I had my last neurological assessment a couple of weeks prior to making this trip and as usual, it was an evaluation of how far I have come. How far has the myoclonus progressed? Are there newer symptoms that I have noticed between now and my last assessment? Yep! Myoclonus is more than just one word, it is a package of unpredictable responses by my neurological system that have ceased to be the center of my focus because it will always be about what I challenge myself with irrespective of whether it is a good or bad day. I left her (my neurologist) with a smile because everything about life can be compartmentalized by the struggles we each face daily. Of course, my assessment ended with an amended prescription – dosages increased, new drugs added but despite having to lug around a pouch filled with my medication, I remind myself that this disorder can only conquer me if I choose to allow it. Myoclonus might constrain me but I made the choice three years ago that I would not be confined by it, working through the mixed feelings of the depression of being finally diagnosed and the fact that I was not the only one struggling with something I never planned for.

And so back then I reassured myself that there was no better time than now to check off the boxes on my to do list, keep a journal and eventually start blogging after being encouraged to do so by my best friend. It has been more than 2 years ago that I made that first effort/attempt to pen down my thoughts – and did I struggle? Yes I did, but I look back now and its almost so far away that one might think it never happened. Alas to everything on earth, there is a beginning and an end – ironically none of us can truly influence each end of the spectrum but what we must do is to do what we can, now that we can.

Today, I reminisce about the 3 year journey and how so much change has been wrought in my life, the people that I have been blessed to encounter and those that may not have been such a blessing. The hard truth is that not everyone we encounter will be a blessing but everyone that we do encounter is there for a reason and will therefore evoke change in us – positive or negative, the choice is entirely up to us. In the course of this journey, I have learned more about medical research than I ever thought I would, forging a path in medicine was never a choice of mine to begin with. And so when I am severely constrained by bouts of sciatica or the worst case of the shakes, or be it the onset of rheumatoid arthritis or the unceasing struggle with the exhaustion of insomnia, I stride on. To me, they are all part of this nasty package called myoclonus – constraining and sometimes severely hampering everyday activities but for each day’s struggle, there is always some victory to be clinched at the end.

I appreciate constantly how unique I am, the strength of God’s love made manifest and the truth that He has, can and will bear this heavy burden. I realize that with the onset of something new in this struggle with myoclonus, there are more accompanying blessings than I can see and so that is what I choose to define me. It is those choices that influence the words I speak, the increasing empathy for people who are nigh on being completely helpless, the fact that I can forgive and move on with the exhilarating feel of true freedom. That I completely acknowledge that the ability to forgive is not mine to create, rather it is a gift of God that I can always tap in and utilize. Those moments of brokenness that have brought me to realize that the core of my strength is and never will be defined by the physical limits of this frail body, rather it is defined by One who words are so inadequate as to completely describe Him. He has, is and will always the very essence of my being. He is all things to me, I can because He says so and therefore what a walk in the park it will be.

It is always a joy explaining to the curious that despite how complicating myoclonus is (they usually never quite grasp the complexity of a nervous system disorder beginning from the brain or the resultant misfiring and overfiring of signals through my nervous system or the almost imperceptible but constant tremors), it is not what defines me. Yep, I may be a little wobbly or twitchy or require more attention than the next person be it in a seating arrangement or when it comes to simple tasks like joining a buffet line to grab a meal, however there is still so much that I can do because it is a phase that will definitely have an end. And it is that end, that we all on our personal paths, strive to attain so as to move on to the next phase or season. Life is a journey comprising a series of seasons but with one final destination in itself.

I am grateful for the beauty of having an emotional support and structure, quietly being set up during the darkest moments by God, the sacrifices made and given by very remarkable individuals – none of whom I anticipated ever meeting. Today, I am more than a patient, more than a part of the data complied for medical research; today I am who God says I am – that is the report I live with. And for everyone who has played such significant roles in my journey, I am grateful that you were/are a part of my journey because someday it will be all over…….and guess what? it won’t be long! Today, I am having the best moments of my life, and looking forward to even better times because my end will progressively and definitely be better than where I am now. It is, in all reality, all working together for my good. Such good that it will be savored by as many as possible, beginning with my household.

Remember this “Destiny is no matter of chance. It is a matter of choice. It is not a thing to be waited for, it is a thing to be achieved”William Jennings Bryan

ייתכןשהרוחות תמיד תהיה לטובתך עד שנפגשנו שוב!

Adios!

The Way of the Orchid……

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Permit me to say that I have not been as available here as I am wont, not by personal choice but by the weight of events that have suddenly all come together all at once, not excluding the bad bout of flu that I had to wrestle through and overcome. I mean, bring it on! Not to sound blase in my remarks, I say that it has indeed been a wonderful week as usual, characterized by the unpredictability of Myoclonus, I have had my share of good and bad days. Barely had an hour’s sleep in 72 hours and entertained the gawking stares of the unenlightened, the passing on of friends and ‘friends’ and the beauty of meeting unique individuals who in their own little way within those few moments, injected some extra zest to the beauty of my unique personal challenges.

I have learnt to “Be genuinely interested in everyone you meet and everyone you meet will be genuinely interested in you” – R. Ogunlaru and I give special mention to Siham (insha Allah! we’ll meet again), Mary – my own distinct Winnie with her boisterous desire to be by my side as much as possible and my guardian angel who despite the sutures from the operation on her thumb was so reluctant to let me out of her sight. When you give, you receive much more than you have given but for each of you – know that my life would be incomplete without you. And with every passing day that I am blessed to live, I commit to passing on every good deed I receive and burying the bad because hey! the world is already sorrowful enough so why choose to add more when all that is really needed is just that little gesture of kindness to just that one person. Despite the crunching setbacks of huge medical bills, I still choose to enjoy the times I have with my various therapists (Igor, Vas and Richie) because I am convinced that there is always a choice to make and I thank you all for making every new day just a bit more bearable.

Phew! I guess that is what happens when you keep so much bottled up inside that instead of a calculated trickle, there is a gush of all that you had wanted to say but have been unable to.

I love orchids! I recall back in the days, how quickly they could transform an environment both with its fragrance and the beauty of its floral arrangement. And today I still count orchids as one of my favorite flowers, I can still recall plucking off many a flower just to enjoy the sweet nectar contained within.  And then I grew up,……… and fell in love with biology. Now not only did I find a subject that was fun but this was one that allowed me to improve on my drawing (lots of beautiful pictures in the textbooks) but it suddenly explained more of the mysteries that I had come to fruitlessly ponder upon.  Learning about life and the whys have always been a thing for me but I drew the line at going into medicine (it just never appealed to me), now although because of my preferred choice of career, I had to drop biology but it still remains a subject of beauty and allure. I learnt about flowers and got to know more about my favorite orchids.

The orchid can be found in almost every continent but one of the amazing things about is this – because of an absence of an endosperm (sorry this is no biology class), in the course of pollination, it has to enter into a funny relationship with a type of fungi (gross!!!) and guess what? these fungi provide the necessary nutrients needed to germinate so that all species of orchids are reliant upon fungi to complete their life-cycles. Now the irony of this concise biology lesson is to draw an analogy that most of us have to face as individuals – were the orchid to be given an option, I am definite that getting involved with fungi would be the least of her choices however we are all subjects of creation and each of us has a distinct path to walk either by acceptance and choice or by compulsion and a higher authority. As I contemplate the past two years struggling with Myoclonus Dystonia, I realize that certain events in our lives are there to ensure that we walk our distinct paths and fulfill our unique purposes. Now, nobody in his or her right senses would opt for some pain or discomfort but what happens when we are thrust into a maelstrom of events that seem to have the singular objective of crippling us, shaking us and turning our little ideal worlds the wrong way up? Do we throw up our hands and let go of the towel or simply roll over and play possum?

The answer is a choice to make however life has a weird way of bringing out the best of us when we encounter some degree of discomfort, let us recall that we are creations of pleasure for a God who truly loves like nobody ever can.  Would it therefore be right to rile and wave our puny fists in His face when we are borne upon the winds, isolated and alone, tossed to and fro by the waves of life, to be deposited in a strange environment just for the sake of being reborn and reformed? For every orchid flower you see, pause and admire it but remember that there is the process behind it that has resulted in it becoming the epitome of beauty that it is. When we, like seeds are in the dark ground, torn away from the shelter and comfort of the world we were born into or we painstakingly created, devoid of companionship (like we were used to) instead of curling up into a ball and dying – let us appreciate that within and around us a chain of events are already set in motion to sustain us through those dark and dreary moments. The nutrients we need to stay alive are inexhaustible and inexplicably geared towards that purpose, the darkness of those early moments are soon to be pierced though by the warm ray of hope and light. We are seemingly unable to fend off the predators that bear fiercely down upon us, through the myriad of pains, twisted joints, trembling muscles, a neurological system that seems to have gone haywire and it sure seems that we have been wrongly created to suffer for no just course. And yet, we are not wholly consumed, for within our tired bodies and palpitating hearts still flickers life and with life, a hope to be chosen.

It may seem like we are all alone but there is never any vacuum in life if only we can choose to drag our eyes and attention from the claustrophobic dankness around us and acknowledge that as long as we yet live, we can choose to hope and dream because just like the little shoot that breaks through the ground, someday it will all be over and then we can truly realize that not only does death exist in life but more importantly life exists in death. As we die to the many comforts and perks that we had gotten used to, let us also realize that birthing and character development is a process and through the pangs of pain and discomfort, insomnia and the jerks, loss of movement in our limbs and a lack of control over our system – a process is being played out and the end is as certain as the sun rise every day. We are not alone through all this, He is working all things together for our good as long as we are totally reliant on Him. Not the ‘friends’ who have walked away from you in derision or the siblings who have prioritized every other thing above you, not the ones who love only in words and cannot find the actions to back it with, not the birds of carrion who circle in futility above you or the hyenas prowling around – definitely not these, but above and beyond them all is the fact that we are creatures of destiny and our destiny and purpose are charted towards good course as long as you give in totally to the One in charge.

There is nothing wrong with the world and its occupants, filled it may seem with a multitude of uncaring souls, just realize that “All true friendliness begins with fire and food and drink and the recognition of rain or frost. …Each human soul has in a sense to enact for itself the gigantic humility of the Incarnation. Every man must descend into the flesh to meet mankind.” – G.K Chesterton.  We are still part of this world and we can make that difference if we choose to, trusting and completely reliant on the truth that we are no freaks of nature but unique beings created and watched over with love by Him. And as we approach each day, unsure of what it may bring, let us also realize that we can make a difference if we choose to and completely astound the multitude of nonchalant and indifferent witnesses that are eagerly gathered around us because we can and because we understand;  A higher calling, A setting apart, A distinct purpose and mission……

“Live each day as if it’s your last’, that was the conventional advice, but really, who had the energy for that? What if it rained or you felt a bit glandy? It just wasn’t practical. Better by far to simply try and be good and courageous and bold and to make a difference. Not change the world exactly, but the bit around you. Go out there with your passion and your talent and skill and work hard at…something. Change lives through art maybe. Cherish your friends, stay true to your principles, live passionately and fully and well. Experience new things. Love and be loved, if you ever get the chance.” – D. Nicholls.  Arguably, many might ask where the chances are but do well to remember that we do not control the chances but we do control our choices and so endeavor to make those choices count. Live in the knowledge of the truth that life consists of moments and whilst we cannot recreate past moments or create future moments, we can make use of this moment so make the now count and then you can be sure to cherish it even when it is long gone and past.

Remember this “I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn’t arrived yet. I have just one day, today, and I’m going to be happy in it.” –  J.H ‘Groucho’ Marx. “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble. Matthew 6:34”
lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!