Tag Archives: Dystonia

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!

Just Wait…..

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Roxie…..

Right now, I feel like I was run over by a 30-ton Mack Truck. Struggling severely with insomnia and it does not look like I am getting the edge, was up till about 3am. The weather forecast was as usual spot-on; Rained all through the wee hours of the morning but it is a welcome development even though some say London rains are pesky and annoying. For me, really wish I could dance in the rain especially after the blistering summer and the almost unbearable heat. The consistent tremors ensure that I would be a perfect cast for the role of a super hero “Mr Exothermic” – that is one of the pros of Myoclonus. I am really considering having a yard sale for my thermal wear because I have gotten so used to my favourite birthday suit.

Anyway I had to go see my chiropractor again and twas yet another mixed session, he did comment on my fatigue level and emphasised the need for sleep (as though I enjoy not being able to sleep) however we both share the same opinion regarding most doctors and their appalling lack of honesty and professionalism. But this is not the real reason for getting onto my trusty companion – I had a mind-blowing encounter and that is what I want to share, and the lessons I learnt in the space of about 15 minutes on my way back home.

I love dogs, have always done regardless of the size and breed (although my predilection is for the huge ones). I would say that as a kid growing up, my best friend was Snoopy and even though he was not the real deal for whatever reasons (I guess pets were not really allowed in our rented house back then) but he taught me what loyalty meant. With each tug on his leash, he would roll behind me – tail wagging and droopy ears moving up and down. He was supposed to be a retriever anyway. He is still alive somewhere, missing a wheel or two but still unflinching in his loyalty. I am so proud that my little princess is also fond of dogs too. H.W Shaw captures it perfectly thus “A dog is the only thing on earth that loves you more than he loves himself.”

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Snoopy and I

As I made my way across the road to catch the 364, I met Roxie and it was like love at first sight, as she waited with her beautiful brown eyes and sleek black hair just outside the pharmacy. Seated on her haunches on the wet ground attached by her leash to the gate stand. She sure had one of the gentlest eyes and with just a brief glance at me, she continued her vigil and I did not need to watch Dynamo Impossible to realise  that her owner was in the pharmacy. Eyes fixed unwavering at the door of the pharmacy, head cocked as she looked through the glass plate window and just a brief glance at anyone who passed near – she waited and waited and waited.

Just as any real dog lover would, my heart went out to her because with each opening of the door, I also waited with expectation (it was so infectious) and still she sat on her haunches. No straining, no whining, just that blind unwavering watching and waiting that only dogs can express so sincerely. And so, I was not in a rush anyway, I waited with her – my heart going out to her as the slight rain persisted and yet Roxie waited. After a couple of minutes, I became apprehensive that there was a possibility she had been forgotten and so I made my way carefully (body aching as usual) into the pharmacy just to help her confirm that her waiting was not in vain.

With bated breath I approached the door, just as the ‘last’ customer (from my point of view) exited and as I made my way in, heading for the visibly empty counter, I saw two ladies at the far end of the shop. It was such a moment of relief which further blossomed as I heard the words “could you please hurry up, I’ve got my dog waiting outside”  What a thrill those words represented to me and as I exited the pharmacy, I whispered to Roxie “She’ll soon be out.” Taking a vantage point at the bus stop, knowing that the next bus would require me spending another 12 minutes, I watched with a wide grin as Roxie’s owner (Tracy) emerged and she leaped up with joy – finally the wait was over. I boarded the bus and together we each made our way home .

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Tracy & Roxie – the wait is over

Funny how those few minutes gave me an entirely new perspective regarding my struggle with Myoclonus. Roxie couldn’t read but she trusted that she was left outside for reasons unknown to her but known to Tracy. She continued waiting even in the slight rain because that was what Tracy asked her to do. She waited, confident in the fact that no matter how long it took, Tracy would re-emerge and they would both go home. She didn’t make a fuss about the conditions outside, she just waited – eyes fixed on the door through which Tracy had disappeared. She couldn’t have heard Tracy urging the pharmacist to hurry up and yet she waited.

Most of us would have given up the wait, hey! the ground was wet. We do not know why we are in this situation but we dare not give up because it is but for a season. Yes, the sleepless nights, the incessant tremors, the annoying independence of our neurological system, the indiscreet whispers and stares thrown our way, the look of indifference and nonchalance we encounter from those around us, the unwillingness to help…..the list is endless, sometimes we just wanna scream ‘I have had enough of this’ but guess what? Let us still wait because He’s in there (though we may not see Him or even acknowledge Him) working out things for our good. As I rode home on the bus, I muttered some words of thanks to Roxie for teaching me to wait.

We did not choose to have a rare neurological disorder (who would) but let us remember that we were born for a reason and purpose and presently, the ground beneath us is so wet and uncomfortable, we are cold and seemingly alone and abandoned but let us learn from Roxie to just wait because it is merely for a season and regardless of how long the season seems to last, someday, it is gonna end – one way or another and then we will make our way home joyfully. Every memory of the long wait and the bad seasons encountered in our sojourn, eclipsed by the joy of the reassurance that we are truly loved by the only One that really matters the most. And that as long as we just wait, eyes fixed where it matters the most, casting but brief glances to the distractions that  want to take our attention away then we can rest assured that we will inevitably finish as victors.

Remember that ours is not a life of mere existence but one of purpose,, so let us choose wisely and just wait.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

 

Behind the Shroud…

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Seated comfortably in the cozy reception of the Chelsea Consulting Rooms, I resist the urge to make my way slowly but steadily to the park and just lay my weary body down. Had another nice session with my pain physiotherapist and with three appointments scheduled for today, it’s one down and two to go. What better way to spend the moments in between than to chronicle my thoughts about my continued battle with FMD, generalised or myoclonus dystonia – many names to this elusive foe that continues to elude the best of experts and yet cunningly ceaselessly pummels our bodies. Each day, gratefully received with thanksgiving and an undeterred view to conquering and triumphing regardless of the shortcomings of medical science.

Over the last week, I have encountered a crop of unique individuals who unknowingly have given me something new to hold onto whilst contemplating the old and the present. Boisterous Dee who has been a friend from outta the blues but from same origins, a triple feathered hat adorning her beautiful crown and an amazing personality – not battling alongside many of us but she still stands out. Roxy who has shown such feistiness in her own battle, determined not to give into the apprehensive future unknowingly created by many medical experts and a worthy ally in this fight. Pam who has doggedly continued in the paths of her parents, not focussing on her struggles with this foe but determining to change the world one person at a time. Debbie and Jamil, empathetic and yet cheering me on in this battle, the list goes on…….You may now understand how special this past week has been.

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein can’t have put my stance more aptly. Dealing within the last few days with a tumultuous aftermath of a wonderful barbecue, working past a severe bout of sciatica and intense aggravating pain, watching bemusingly as my fore finger insists on differentiating itself from the rest of my fingers…..the list goes on and on. This battle goes on, each day defining itself by the little steps of successes achieved despite the irritating restraints occasioned by a neurological system wanting to be independent, I refuse to be bullied into silence neither will I become a victim because “when I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and could say, ‘I used everything you gave me’.”- E. Bombeck

One thing stands clear even with my wonderful team of consultants, each adopting an approach that’s most comfortable with them, this is a personal battle and there can only be one victor……Me. Regardless of the diverse approaches, there is a limit to the extents to which we can unravel the mysteries of the human body and its complex systems. What lies behind the shroud concealing the answers to our numerous unanswered questions will definitely be unimaginable and whilst we yet struggle with our puny attempts to understand, time passes on and the question we should ask is how best can we make use of this inevitably scarce resource called time. Continue to be fazed and depressed when individuals like us can’t provide the answers we seek or channel our time and talent towards improving the life of just that one person at a time. My choice has been made, there will be no white flag across my door. I will stay in the trenches until I’m out of ammunition and even when I have run out, I choose to lift my eyes up and exploit the inexhaustible supplies available to each of us.

This is yet another clarion call to my friends and fellow warriors, as long as breath remains, there is yet work to be done. Remember that the best way to triumph over your weaknesses and frailties is to assist another with theirs and even when the attempt is rebuffed, be glad you made the effort because in the effort lies victory. The bills may be overwhelming, the pain a constant nuisance but acknowledge that there’s a reason for every season and whilst we may yet not comprehend the reason, acknowledge it is a season and plug in those talents – each of us complete with a unique set…….for what a tale of misery and woe if we choose to allow those talents to waste because it is better to wear out than to rust.

I have to dash (not literally) across for my next appointment but I will remain valiant because that is my choice. Nothing is going to brow beat me into forced submission, my voice will be heard not in tales of woes and misery (the world is sad enough) but in a tale of triumphant victory that despite it all, I conquered and triumphed. Many will come across my path as I will, across many and knowing fully well that in life, we meet to part and part to meet, I want to make those brief moments count. It has never been about the numbers and never will but for the very few that choose to stand alongside me, I raise my hat to you for together we will chart a path of hope, victory and legacies for generations unborn.

Remember, we were made to live and not exist.

פרידהעדשנפגששובחבריםיקרים

Adios!

My Journey (2)……

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Never make your home in a place. Make a home for yourself inside your own head. You’ll find what you need to furnish it – memory, friends you can trust, love of learning, and other such things. That way it will go with you wherever you journey. – Tad Williams. As always, it is good to be back home. Pretty exhausted after a trans-continental flight but with mixed feelings about my inability to keep you in the loop as desired. Reasons ranging from location and technological restraints are the guilty, however give me a tree and I will carve it on the bark awaiting that one passerby who will not be too busy to just stop for a moment or two.

It is universally acknowledged that money answers all thing but draw the line at making it your mistress or master, that is a path many have walked and never returned. Spent some wonderful moments with family and friends but remember that there are two types of family, the one you were born into without a choice and the one you choose to be part of, nonetheless it is so much joy when there is an intersecting set of both. I have come away rekindled and ablaze with a renewed confidence in this fact – we never walk alone. From the friends made along the way – Bina, Paul, Moses, Christy, Cynthia; the list is endless to those who willingly and unreservedly gave their all just to associate with me during these tumultuous season, I can only but say these “kind acts irrespective of how little they may be always have the ability to send its roots down and yield’

I had a wonderful reunion with friends and brothers who sprung to arms without a thought or two, it has been nigh over 2 decades and yet footprints let behind on the sands of time are never truly eroded no matter how fiercely the wind blows. Como, Cyril, Bubay – my thanks because it’s in the effort, victory lies and whilst you may yet grapple with fitting in this conundrum into your already busy schedule,we can as long as there is a will and no matter how little that spark may be, it has the potential to birth a roaring inferno. I have returned with a brighter perspective, a renewed zeal and a desire to bless as many as I can because what good is gold in our hands when the very next person beside us has but dross in his. We have been blessed to bless and if you are here asking what blessings you have got – be thankful that you can read this, there are many who cannot.

I saw Dr Marion and it was a nice consult. Functional Movement Disorder or Dystonia cannot curb me or put me down and as long as there yet remains breath in these weary bones, my message of hope and encouragement will go on. Permit me to borrow the cheeky words of Paul “when life tosses lemons at you, catch them and make yourself a drink – add some vodka if your predilections tend that way’. For the many who were honourable enough to actually meet me and draw some inspiration, I say thank you for being different. Jummy, for going the extra mile and not being a cry baby (it would have broken my heart). Irene, for being selfless in her job. Stella, for kicking ass on my behalf, LM for seeing me as a person,Shirls for the calls and for EE, the most unique and amazing individual I have come across,, sacrificing all and more. Needless to say that ” I have learned more about love,selflessness and human understanding from the people I have met in this great adventure in the battle against FMD/DYstonia than I ever did in the cutthroat, competitive world in which I spent a great part of my life” – A.P

Her diagnosis – it can get worse because our brains are so unique that if we only knew better, we would treasure each waking moment not by zapping off to eke out funds but to take some minutes and just be thankful. Reach out and plant a seed of goodness in just that one person, be it by asking the usual pleasantries and really listening to the feedback. Undeniably, there are many out there who are as unscrupulous whenever there is an opening but again remember that no matter how thin a slice of bread is, there are always two sides so yet again choose what side you wanna look at. Each day,I am  privileged to see champions in life, who having been denied of the very luxuries of every day life, yet are not driven to despair and depression. Out there on social sites, making their voices heard – we can and are entitled to the very best life can give because that is exacty who we were made to be VICTORS in life and regardless of the incessant pains, the apprehensions of tomorrow, the limitations of medical science, there is a truth out there – you are who you choose to be; cervical dystonia or not, rheumatoid arthritis or not, paroxysmal dystonia or not, MS or not. For although our bodies wither away as is the way of this transient life, our spirits are ablaze and ignited with hope that we are not ruled by the strength of our bodies but by the inexhaustible reserves of our spirit in God.

Lacing my own shoes might be an exercise in its own rights but heck! I sure can still lace them. Not having 90 degrees rotation to my neck does not prevent me from teaching myself to process things fast whilst they are still ahead of me. Not being able to put my back through those usual maneuvers has not denied me the fact that I still have a back regardless of the excruciating pain made lighter with the use of traction devices. I may not be able to touch my toes but I sure can see them and they look still as great. Being stared at in public by the ignorant will not drive me to depression, it only affords me the opportunity to increase someone else’s knowledge base and make just that one person more knowledgeable. There are battles out there we fight each and every day and whilst we are all uniquely tosses into our own arenas, remember that

Bullfight critics ranked in rows
Crowd the enormous Plaza full
But only one is there who knows
And he’s the man who fights the bull.

For me,I have my choice and in the words of my pa, it is the side that stays longest in the trenches that wins the battle so for you out there,dig in and keep on repelling waves of attacks upon attacks for in all sincerity, every season has a beginning and an end. To my many followers, my heart goes out to you in appreciation for that kind word, kind gesture, sacrifice. Someday, we will stand arms linked and sing our song of victory because you are part of my story. You give me that boost and drive to do more than I ever thought I would do because I know whom I belong to and I know what His Plans are for me.

Also remember………………we were made to live for His pleasure and not just exist.

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

 

MY JOURNEY…….

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This is going to be like a journal of some sorts and as the word goes, it is an expression of my various encounters and my continued triumph over the neurological disorder termed dystonia. For the benefit of the countless who are still  ignorant, remember that the message is always in the details. DYSTONIA IS NOT A DISEASE, IT IS A degenerative DISORDER! And going by the dictionary definition, a disorder is a physical condition in which there is a disturbance of normal functioning while a disease is an impairment of health usually caused by a pathogen. Kindly desist from making some of us pull out our hair in frustration and it is worse when confused by a medical practitioner who ought to be in tune with dynamism that accompanies everything in life, careers and professions inclusive.

Which reminds me of a hilarious episode in a divorce proceedings which I am keenly following whenever possible. The parties in dispute are individuals just like you and I, and as the case where maturity usually precedes the natural bestial nature of man, the man has opted to seek redress and dissolution by going through the appropriate channels whilst the woman, a self acclaimed and proven pseudologist, (note that not every female is a lady) despite being an epitome of shamelessness and a walking catastrophe cannot but revert to being bestial irrespective of her ‘decent’ origins. Well that said for the two, the counsel representing the woman (again note that birds of similar plumage can only flock together) was so severely trounced by his counterpart – a younger attorney with decades separating them in terms of practice that it was actually bemusing to be reminded that stagnancy in life is worse than being dead.

No matter how hard truth seeks to be muffled, in the end, freedom and true liberation comes only from acceptance and acknowledgement of the truth. As we watch with bated breath, the health struggles of Mandiba, the legacies fought for and left behind can never be eroded. That the actions of a simple illiterate black lady who refused to submit to the oppressions of apartheid has become one of the most notable events in black Africa only drives home the point that in every one of us lies the resolve to make a difference in the world. If each one of us can tell ourselves that truth, then what a wonderful world we will live in. A simple black African-American Minister, just like anyone of us dreamers dared to be different and today, decades after his demise, his words still ring loud and true.

As I contemplate on the events going on in my life, and the seeming uncertainty of the future, I can still proclaim that there is hope as long as you can dare to grasp it. Angelina Jolie, in yet one of her sterling performances in “Changeling” ended the movie with these lines…….’now I have gotten something I have always looked for. HOPE’. What else do we live for but hope that there will be a better tomorrow? What else will make a previously healthy individual, now seemingly bested  by dystonia, still able to make his voice heard and proclaim to as many that life is not determined by the state of your physical condition but by the strength of your spirit. And what determines the strength of your spirit, is the source of your strength. I know what my source is and I choose Him over and over again.

Little gestures of kindness, a friendly pat on the back, a friendly smile are inexpensive acts which cost us nothing but are received with much appreciation. I made a new friend in Zimbabwe and her husband is dystonic, and all she needed were just a few words and some empathy because whether we like it or not, irrespective of what we are going through, there is always strength to offer a helping hand. What helping hand have you offered in the past twenty-four hours? How many words have you directed towards someone on the other end of the divide? What act of kindness have you shown someone else apart from yourself in the past twenty-four hours? These are the very things by which our own lives will be measured at the end of all things because it is not so much as how much you intend to but what you really get done that matters.

One of my very good friends, Hody is finally getting married and I celebrate with her because hers is a story of choosing to triumph over life’s unfairness. In as much as she can look back at it all with a strength of spirit formed over the years, I can attest to this fact that we are the only ones who can change our lives however we should not be content with just our lives but endeavour to reach that one person who is also going through stuff. Hody, knowing you has been a privilege indeed and just like you always say, remember to do whatever makes you sleep at night especially as you wade the waters to begin a new life with your physician and teamie.

I am seeing a new Neurologist in a couple of days and as I anxiously prepare for that meeting, I know that my choices have already been made. For the rest of us out there, who are contemplating life’s sometimes aggravating tantrums, remember that the will to live is also a choice but the passion to dare to be different is a battle that will be continually fought and even now, you can determine to be the winner because the truth is that the victory has already been won, it is now up to you to cease that victory or continue to wallow in the squalor that life has tossed you into. Get out of the muck and live a life of purpose.

I leave you with the words of Johann Gottfried Von Herder, “Without inspiration, the best powers of the mind remain dormant. There is a fuel in us which needs to be ignited with sparks.” Do yourself a world of good and inspire yourself, utilize the best powers of your mind and dare to be you.

Also remember………………we were made to live for His pleasure and not just exist.

 פרידהעדשנפגששובחבריםיקרים ….. 

Adios!

In Another’s Moccasins(2)………

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Hollas amigos,

Phew! how quickly time flies. (“Time flies, but the memories collected along the way can never be replaced” – Ashley Tisdale). A week has gone by and this should have been posted before now but I’ve been kinda busy, dealing with the ups and downs of life and living with dystonia. There is absolutely nothing comparable to walking a journey with a loved one and you are more blessed when you are privileged to have more than one. The moccasins are pretty worn out now but there is this thing with breaking in new footwear that usually leaves one sentimentally attached to the old especially when they have walked through varying seasons of life.

It is a beautiful day indeed, the thrill of opening your eyes and beholding a new day can never be recaptured especially if you choose to appreciate the fine moments that God blesses us with each moment. Life is good, right? Choose to acquiesce and see how better your week turns out because we are in charge as delegated by the One who reigns, so choose to proclaim that life is good irrespective of what the circumstances may be saying because that is just what they are circumstances. I really wish that sometimes we could borrow a leaf from Professor Dumbledore and just pick out memories and place in that bowl so as to avoid gushing endlessly once we get started on a subject because life consists of inter-related memories.

One of my friends just had her Botox treatment session, botoxulin helps ameliorate the tremors so it is a phase of management procedures for people living with dystonia. Just wait for it………………her session consists of taking 30 injections, yes THIRTY. I have taken only four and I know how many macho men are still scared of needles, so imagine taking 30 at a go and regularly at that. Now do you agree that you have more than a reason to say thanks to God for health even if your moccasins are fraying or your cuffs are better folded than buttoned down. Take it from me, get out of that self-induced pity party and live life with eyes wide open. Breathe and exhilarate with each breath of fresh air, some cannot. Listen for the chirping of the birds and the insects, even the occasional rodent that is a nuisance with your trash and appreciate these little moments, many would die for just an opportunity to.

I have got this traction device that never ceases to amaze my brother whenever he sees me in it and I have to remind him that it is no toy, but that is the way of life, we kinda prefer those things that we certainly do not want. Walking in another’s moccasins is way different from admiring them and so I kindly ask that whilst you hustle and bustle in order to get those resources in, take a look around and spot that one person who would do better with an encouraging word. Just like Mma, the beautiful air hostess (I think she is still single and she was pretty well-mannered) who almost refused me boarding her tiny aircraft because I looked like a fragile version of robocop. Eventually, she turned out to be quite a wonderful companion all through the flight and she did promise to read up on dystonia and take time to be more accommodating. Mma, do well to drop me a line or two because if you are as true as you portrayed yourself then you would make a very good companion for a deserving fellow and I might know a few *winks*

Are you familiar with these words?

” We all face stormy times in our lives. Storms that can seem impossible to bear, however once the storm is over (cos they surely will), we wonder to ourselves how we got though then and managed to survive. One thing is for certain, those storms we go through will change our lives and occasionally, we will not be the same people who walked into them” – Anon E. Moss……italics added and mine.

It is however more despairing when we do the natural thing and look out with troubled souls to those who we feel will help prop us up only to get the inevitable result;  the arm of flesh will always fail and just as the tides and seasons are determined by God, so also is He waiting for us to look to Him for help during those inevitable storms. I did the unusual yesterday(after reading a very good book by John Bevere) and called up a couple of my old buddies who just happened to be very absent during the begin of this storm and I told them that I actually had resented them for their indifference but now I can look back at still be thankful that they were indifferent because it has made me more knowledgeable about adverse times and the privilege of being alone save for a few. Now I can truly understand and connect with people who are experiencing rough patches im their lives, because these storms can strengthen or break you, again it is yours to choose.

Without them  choosing to be indifferent, I would never have come across some very outstanding individuals in my sojourn with dystonia. These people have also made me realise that ‘truly there can and are prophets in Bethlehem’, all it takes is just for you to choose not to be overwhelmed by your circumstances and appreciate that you can still do the little things possible and open up your heart to experience the love in the hearts of the few that God brings along your way.  And whilst my moccasins may be wearing out, I am glad for the opportunity to walk in them and be sustained all through. For as fleeting as the days may be, the discomforts and the incessant pain a constant reminder of the frailty of my humanity, the constant sacrifices of loved ones and the joy of finding love in a hopeless place – no better truth can be said than this “I am ever thankful for this process because I am stronger and better and more knowledgeable, and the love I have discovered on this journey will never be exchanged for anything”.

Although it is now a year since the best teacher I have ever had passed on, I choose to live my life in a way that would do him proud because he bequeathed a legacy that will last as long as life and in his own words, I have learnt ‘don’t beat him up, he is a madman’. Adieu Hilary E. Nzenwa!

For those of you who are currently being  buffeted by the storms of life, take a breath and glance down and be thankful for those moccasins on your feet.

“We are not human beings on a spiritual journey. We are spiritual beings on a human journey.” – Stephen R. Covey
Remember that there is a purpose to everything that happens in life and we were created to live for His pleasure and not just to exist.

Adios!

פרידה עד שנפגש שוב חברים יקרים …..