In the twilight zone……

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In the zone

Twilight

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.” – Helen Keller

It has been exactly 907 days ago that I last found myself in this similar office setting that characterizes most white collar jobs and it can go without saying that I am being flooded with memories from the last decade, some with wistful nostalgia and some with the renewed resolve not to ever subject myself to such distasteful experiences that the very memories almost want to make me bolt out drenched in perspiration and puke, but it all makes for a good telling someday. My back is screaming out from the contusions of my vertebrae, but as usual I will still soldier on, despite the pain because it goes without saying that there can be no pain without pleasure.

So much has taken place between my birthday (a couple of weeks ago) and now, and truly it just seems that in all reality, life’s most significant changes occur in the space of moments but the question is that most times, we are so blithely unaware of the changes that we spend the rest of our feeble days toiling with the effort of trying to grasp the changes that have been so magnanimously wrought on our behalf. I am so not concerned with my lack of ability to do so many things because, life is much more fruitful when I concern myself with those things that I can still do with this weakened but yet living body. I began the year on a good note and I still intend to stay true on that path…..recuperating from a sudden bout of allergies and the seemingly gradual route towards getting better care for this body are things that I hoist above my head and this movement disorder, try as hard as you may, I am not yet done.

Talking about change is a subject that is as vast as time itself however when these changes are wrought by no willful choice of mine, then it usually seems to be a mite harder to cope with but what makes for difference is that change is inevitable but what we do with that change is our own signature trademark that we have passed through this life not just as an inanimate pawn but as a piece who is aware that life is one to be lived. I was in the company of one of the nicest orthopedic surgeon and nurse on this side of the continent and he remarked that he was blown away by my personality (as a child, I thought that superheroes were always super cool anyway but I guess it is a thing of choice or else why would there be villains) but I explained to him that we always have a choice to either complain or just make the best of whatever life throws at you. Now this was no carefully scripted media piece but one borne from my experiences as an individual struggling with a rare, incurable neurological disorder. We can choose to see life as a suction pump inexorably sucking out our juices and leaving us with so much bile that we are indifferent to the lives that surround us every day or we can choose to see life as a funnel with which we can share as much of the goodness, grace and blessings that we inexplicably receive each day. Again, it is a choice to be made.

One of the very first idioms that stuck with me all through childhood is that regardless of how thin a slice of bread is, there are two sides to it. Now the question that haunts me especially in my dealings with majority of people is why the vast majority of us are so stuck in twilight zone that we feel obligated to infect others with as much as gloom as possible. Where has all the love gone to? Smiles back in the days were free as in the word free, what is with all the false warmheartedness that so thinly conceals gall and bitterness in today’s world. I always deem to stick with the two simplest rules – love your Creator with all that you have got (it was a gift anyway) and do unto your neighbor what you would wish done to you (if the shoes were reversed), and from my candid opinion, it can not come any simpler than that. Life is like a leaf gently being blown in the winds of spring and just when you think what a splendid time the leaf is having, a gust throws it down the drain and its gone for good. We will never know what number our days will be but we can choose how we number them – making each moment count for the good of someone else because it is only in giving that we truly receive. The best thing to do in times of despair is to give as much as we can and feel a sense of elation and lightness that we not only did but that we were able to.

Would I have done things differently without the scourge of this disorder? I dare to say that I am privileged to be in the position where I can say that pain has no hold over me, it may just make me do things a lot slower but it sure gives me more drive to do the very things  that make just that other person a little better. It has given me the rare opportunity to realize and acknowledge that family is not based on blood only, but in the ability to reach out and acknowledge that each of us is here on earth for a time such as this. Does it suck as much as it sounds? Yes and more, but being able to pick myself up everyday and refuse to remain in the twilight zone where indifference is the theme of the period is what I choose to do each and every day. Being indifferent has never gotten anyone anything, it is definitely not going to change now and so whilst it may seem like the normal thing to do, shake off those eerie chains that so tenaciously yet invisibly hold you back from being a productive you and be different, take a stand for something, dream something and work at achieving it. Stop being bound by the isolation of your office work space and the confines of your work hours (which you most likely hate) and do something else that screams out ‘I am here and I choose to be purposeful’.

Break out of that mould that you have placed yourself in and begin today, it is better late than never. Do something nice for someone else who may never be able to repay you back and watch the seed you have so bravely planted, blossom into such a thing of beauty. Cut a swathe of cheer and happiness as you walk through life and see the gloom of the twilight dispel in your face. Now is the time to make hay because very soon the sun will go down as it must and then you can truly be glad that you did.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Taking Stock….

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Taking Stock

Choose to listen to your inner voice, not the jumbled opinions of everyone else. Do what you know in your heart is right for YOU. Its your road, and yours alone. Others may walk it with you, but no one can walk it for you. And be sure to appreciate every day of your life. – Melchor Lim (emphasis mine)

I have been struggling with severe excruciating bouts of sciatica for the last week and honestly it effectively dampened my desire to come alive here and do some heart sharing however I am better now, almost emptied my pharmacy of their supply of ice pack compress. A no holds barred struggle between the tremors that accompanied the initial icy feeling and the amelioration of the intense pain, I won!!! And the last week of the month was an exciting one, had an interview in Central London and despite my efforts to appear as normal as possible, it obviously did not work because most of the symptoms were triggered and caused quite a bit of consternation for Tony, Lloyd (?) and Hugo, who admitted that they had never seen anything like it within the five (5) years they have been dealing with individuals and unabashedly, I can take that as a complement now because they see thousands of people daily but most importantly, they were eager to learn and that tells me how amazing they really are. Life is all about learning and only stops in the grave, stimulating their ability to see the big picture was such a surreal experience and I left there knowing I had made new friends and shared myself with them.

Yesterday, I spent the best three hours this year in the company of one of the most remarkable ladies I have ever been privileged to encounter. Yeah, twas a lunch date at Harvesters’ and I truly left there with a great harvest excluding a filled belly of ribbed steak, mushrooms, chips, a healthy portion of vegetable salad and a glass of sparkling Chardonnay to round it off with. Now that is something for you to drool over…….

One of the issues that came up recurrently was the undeniable fact that every one of us has a facade and it is only the brave who are able to step out from the security of their rooms and face the world without that facade, armed with the knowledge that being different is the best compliment you can ever pay yourself. We took stock of our individual lives because hey!its December already and I remember how stunned I was whilst rearranging (I do that every moment when I can) my room when I came across my medical report dated January 2013 and it only seemed like the day before I sat with Professor Hanna reviewing my case on that day. Nostalgic indeed but so much has gone by so quickly that like the dropping leaves from the trees, we rarely ever have the time to notice when they drop. I have realised that the best thing we can and will ever get is NOW and so what we choose to do with it is as significant as the rest of our lives and yes, erring is an ability but our response to that ability is what differentiates us from the rest of the billions all over the globe. I have had my ups and my downs, each in its own varying measure but both present nonetheless. I have overcome a lot of the shackles that hitherto held me back, still trusting God for the perfection that He has promised and I eagerly await.

I have decided to devote this month particularly to taking stock (I kinda do that every morning but this is special) because I am truly overwhelmed by the faithfulness of The One whose purpose and counsel no one can thwart. I am humbled by the greatness of His Grace and favour bestowed upon lil ole me, even at those really dark moments when I just did not want to be found – His Grace found me. Amidst the gales and storms of the year, when it seemed like I had finally been cast adrift like flotsam on the vast oceans of the earth – His Grace found me and upheld me. What an awesome experience it is, being able to bask in and luxuriate in His Amazing grace……………………….. Getting that sms from my father in response to my congratulatory message to them on their 40th wedding anniversary, telling me that their journey would have been incomplete without me being a part of it was just beautiful. Such reminders, subtle and loud compel me to acknowledge that I am and can never be just a statistic in this world. Regardless of how rough the road is, I know one fact – there is an expected end and whilst I am being directed there, I choose to utilise every moment with everyone who has graciously given me their time, their resource, their support, their derision and disrespect (these ones really don’t know any better). And thankfully, I have gotten my back brace so I am glad to have been there to provide a shoulder for those who needed it and for those who will.

The Christmas trees are all out, the decorating is in full earnest, shopping is in crazy mode and I pause and wish I could tell as many as I can that everyday is a day to be grateful for and rejoice in. Take a look at the very things that you have even as you take your shower and be thankful, naturally we all get to shower at least once a day so…..! Be thankful for those moments of absurd laughter, be thankful for those moments of sorrow (it definitely made you think just a little bit deeper, didn’t it?), be thankful for the different seasons – spring, summer, autumn and winter, not everyone can. I still chuckle when I recall Joiv capturing distaste for London’s weather because she almost ‘lost’ her toes to frostbite but that is a reason to be thankful for because I remember my walk with Lawrence who had lost his toes but was still cheery enough to egg me one when I just felt like giving up. I am thankful for Vixen, for daring to do something different and demand happiness from life. I am thankful for Lisa, gorgeous and stunning but who has been such an amazing support of strength and encouragement. I am thankful for Elaine, Pam and my fellow compadre in this battle with dystonia, for being able to rip off that facade and stand tall and strong even with the pain. I am thankful for Shirls, Ele, Vichy – refusing to quit even when I was more than a burden. I am thankful for my brothers from High School – Como, Djecomms, my friends from University – few but awesome even in their little number.

I can go on and on, however I am very grateful for you all that take the pains to read and walk this journey with me. Alas! the night is indeed over and what a wonderful time we will enjoy now the day is come.  For you, my appeal is use this time NOW, to be thankful and grateful for the mistakes and the lessons you have learnt because without learning, you are sure to flunk the tests of life. Be thankful for yet another opportunity to take stock of your uniqueness and acknowledge that there is so much that you can do with just that one person that you encounter, but you must choose to or else regret the opportunity past.

“Life without thankfulness is devoid of love and passion. Hope without thankfulness is lacking in fine perception. Faith without thankfulness lacks strength and fortitude. Every virtue divorced from thankfulness is maimed and limps along the spiritual road.” – John Henry Jowett

Remember yet again, that a life without thanksgiving is worse than those who have passed away. Make your NOW count and rejoice in the memories tomorrow.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Gone with the wind???….

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It is 3.40am and the very walls of the house are trembling as the winds buffet everything in its path and although it may be scary for many but for me, it is yet another silent message that nothing just happens and even when we are buffeted on all sides by the winds of life, realize that there is a purpose to it and whilst in the midst of the storm, it seems inexplicably difficult to acknowledge that – get this; it does not change that truth, nothing just happens.

It is two years now since I was officially diagnosed with this gargantuan medical challenge and neurological disorder and I can assure you all that it has been a gargantuan change to my life and just like St Jude as she howls and stamps her presence, so much garbage and debris has been blown out of my life, giving me the unique privilege of having a clearer perspective to those things that I once took for granted and appreciating better the gift of the Present. Making me realize that even amidst the howling winds, there can be peace within the storm not because of what may seem to be happening all around me but because I have chosen before now to define what my foundation shall be and having the certain assurance that regardless of this 89 mph wind gusts of St Jude, my anchor holds within the storm.

I watched with keen interest as the tree that stands in the front lawn relentlessly lost her leaves and as each leaf was torn off and blown away, it seemed such a hopeless and despairing event because those leaves have been torn off from the familiarity, security, comfort of home, not by choice but by events that they certainly had no say in. However, as each leaf was borne away, it also marked the beginning and end of another season. Now as I sit in silent contemplation of all the events that have taken place in my life within the last 24 months, I can enjoy the beauty of a whimsical smile because, what a journey it has been. From the very first moments, the words ‘rare and incurable’ were uttered by Adrian Casey, it has been a tumultuous journey. I recall the nights when the rumblings of my stomach were loud enough to be heard on the phone during international calls – not because they were symptoms of a movement disorder but from sheer hunger. I can remember the despondency I felt, the isolation, the many unanswered questions, the bleakness of the present then…..

Today as I yet again share my heart, I am thankful for the winds of St Jude that threatened at times to overwhelm me but that have unerringly blown me across the many paths of the beautiful people I can call friends today. I thank God for the times all the flights and trains were grounded (for safety reasons which I could not appreciate then), for the atrocious conditions that forced me to force my way forward, head down and scarf lifted with limited visibility, with nothing but just my faith and the infallible truth that I was created for a purpose and a much grander reason than I may have been able to imagine then. I have had my very moorings almost blown away, my foundations shaken, veneers of a past life peeled away painfully, exposed to the elements with nothing to seemingly live for. I have experienced the deepest betrayals by those I chose to have looked up to, been cast aside in derision like an old rag doll, ignored by those whom I weakly reached out for some assistance. I have experienced the depths of isolation and loneliness, cast and borne by the winds of change, away from what I called security and home before now. I have lost all that could be lost, shed tears from acute physical, mental and emotional pain but I am still standing today – what a journey it has been indeed.

Ironically St Jude according to Catholicism, is the saint for the hopeless and the despairing and how appropriately named is today’s windstorm. I have come to realize that each time I experience these storms, there is a better future awaiting me and I will always choose to believe that since I am still with breath, then I am but stronger in all aspects. Without these winds, I will not be doing this. Without these winds, I will not be blessed with the friends that I have made. Without these winds, I will not be who I am today and I know that I can never be gone with the winds because the winds are here just to move me to a better place and the stronger they are, the further and better a location I am getting to. The stronger it blows, the more unique individuals I get to come across albeit for a brief period of time and so I have learned to make every moment count because all I have is the now and so I have chosen to make everyone count. Now I can truly appreciate how blessed I am to be surrounded on all sides by a family defined not by blood but by the vicissitudes of life and the awesome realization that God alone rules over the affairs of men and therefore there is a purpose to everything.

I count myself blessed to be able to say ‘it has not been by strength or by might but by the provisions of a God whose love is so real and sincere’. I choose to lift my face in the winds, with my legs spread apart and my staff firmly held and just breathe words of thanksgiving for a journey that is bringing me to my expected end. For the lives that I have had the privilege of passing through, for the lives that have inspired me and been inspired by mine – no truer experience is worth reliving and despite the downs (countless they may have seemed then), the ups will forever be etched in my life. And whilst like a Lone Ranger it has seemed many times, I am truly grateful for the Tontos that have accompanied me each phase of this windstorm. I am thankful for the lesson that has taught me to understand that
encountered the most profound of moments and learned that life is like a coin, pleasure and pain are the two sides. Only one side is visible at times but remember that the other side is waiting for its turn to be visible.

And even as silence and calm precedes a fresh burst of wind, I have come to acknowledge that it is only the cowardly and foolish who believe that just because difficulties differ in intensity then they are immune to their own storms, however the wise use these moments of calm to hurriedly reach out and grasp a floundering arm, a struggling life and make a significant impact. Nothing lasts for ever and so dig deep and press on, for this storm is just for a season. You can choose to complain that roses have thorns or rejoice that thorns have roses, the choice is always yours to make. And as I wrap up this, I am thankful for you all that have been willing to share this journey with me and glad for the opportunity to have been bold enough to share it with you.

“I believe in going with the flow. I don’t believe in fighting against the flow. You ride on your river and you go with the tides and the flow. But it has to be your river, not someone else’s. Everyone has their own river, and you don’t need to swim, float, sail on their’s, but you need to be in your own river and you need to go with it. And I don’t believe in fighting the wind. You go and you fly with your wind. Let everyone else catch their own gusts of wind and let them fly with their own gusts of wind, and you go and you fly with yours.” – C. JoyBell C.

Remember that we are all creatures of purpose and pleasure, make every moment count because now is all you have – yesterday is gone and tomorrow is yet to come.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Voting with your feet……

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Use your feet, don’t stop at the mouth

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.”  – Elie Wiesel

I have just washed down my clonazepam and yet I am still up, the warm eyes of my bedside radio faithfully tell me it is a few minutes past 3am and there is just something really serene about the night-time – it is the best time to actually have a conversation, and I know only One who is up at every moment and I am truly grateful for the alone time because usually it is a time of replenishment especially after struggling through the week on a gas tank that gets depleted faster each time. I really should have gotten round to this earlier on but I just needed to really try to step it down a notch. I take my last 300mg of gabapentin round about midnight and then wait, watch and pray for the sleep to really come. By the way, you know there is this thing about true victory – in the effort, lies victory. And for me, undeniably it has been a full week and just like the tastefully prepared Subway sandwich, there has been loads of sweet and sour and spicy but together it tastes great.  The fact remains that life is all about moments and so we have to choose those that will push us just that lil bit further down our path.

Going by the words of Aristotle “man is by nature a political animal” and therefore the way we live our lives to a very large extent determines what party you belong to – the crowd, the nonchalant and indifferent, the vociferous or the egregious,the nay sayers or the doers. We all each need to truly realise where we are before we can then aspire to be where we want to belong. However this is not a political pitch, I am a firm proponent of being a flag bearer of the truth and therefore in today’s world that makes you alone most times. Beautiful memories of days of activism still serve me and yet I still commit myself to bestir me from the lethargy that so warmly embraces most of us. Just choosing not to do anything and even when there is a need, we prefer to ask more questions (and usually end there) as against just doing something. I would love to appreciate my friend and brother – Uch for giving me the title for this piece and be assured that the word ‘vote’ certainly transcends ballot boxes anyway.

It is always more intriguing trying to express my journey through these words but I am assured that there are many who are presently sitting on a pile of lemons, battered and bruised by the impact of being constantly hit in the face with lemons and just out of ideas and it is really to you that I speak to because there again, you have to vote (and in this context, it simply means doing more than just talking) to either wallow in a putrid atmosphere of rotting lemons or get to work, making lemonades. I just responded to my cuz that the lemonade has become so normal to me now that I have chosen to spice it up with a little tequila……funny right, considering I do not imbibe alcohol. Thank God it is Saturday morning – it is a new day and every morning that I can behold the rays of the sun awakening in its splendour, I know that I can and will make it.  And like Dan Ruther, I would much rather wear out than rust out.

But what happens when you cannot help but acquiesce to the fact that your feet simply cannot go any further? That was the amusing event that occurred on Monday. It takes me about 390 seconds to the shopping mall and as usual, because I do have to really rest, I usually kinda try to make my outings count even though I get to do it alone but hey! we all have to vote and our feet need to take us from point A to B in order to make that vote count – this includes me with my trusty staff of authority that is already showing signs of strain and wear but I dunno about you, every accoutrement of mine says ‘I am still here for you’ and from experience, I have come to actually believe what they tell me in comparison to the deluge of unkept promises and insincere statements that I am inundated with almost daily. And so I decided to see if I could do just a lil bit of shopping as I was almost out of instant meals and fruits. Now the weird thing about this disorder is that no matter how much you would love to ignore it and just carry on for once like the average human being – before you know it, it eerily whispers its commands to my neurological system and the alarm bells go clanging away. The state of independence and emergency rule is declared – you cannot help it.

So there I was, after barely being able to cross the road, plunked down on a road bench wondering how I was going to get home. And I really cared less for the little groceries I picked up, I just needed to get home but how was the issue. The cab companies were not too forthcoming and so I prepared myself to wait for some miracle to take place because miracles do occur every moment. And then It hit me, I had scheduled a house call by my friend and brother and so immediately, with barely responsive fingers (thank God for bluetooth ear pieces), I called out and he rushed to my assistance – helping my quivering  mass into his car and home. Phew! that was really a close call. Anyway we got talking and at the end of the nice company, absolutely unexpected gift and him being there for me, I took away that phrase that until each of us begin to vote with our feet, we are pretty much consigned to a world where anything goes. A case of whichever goat cries the loudest is taken to be the hungriest. And here again, I am completely flummoxed….why do we spend more time making all these neighing noises and yet still standing where we are. One of the fundamental principles of life is that a real man puts his money where his mouth is and in this case, money represents action. We are constantly inundated with words from all sides but the real difference is the ones that actually get put into action.

Like I said, it has been a week – commenced the novel Redcord therapy (redcord.com) here in the UK and undeniably it is something new and worth a shot. Why curl yourself into a ball, throw a pity party and allow yourself be thumped into submission when you can simply get up and actually do something about your present circumstances. Vote with your feet, enough of the semantics and the speeches – it is time to do something and even if it has to be baby steps – get your feet moving. In a bid to fight insomnia, I have downloaded ‘Sleep Time by Azunmio’ which helps record my sleep cycle and tell me how I am faring and even though the stats are not very encouraging, at the very least I am doing something about something. Thanks Vas! I do understand how difficult is it make you understand how difficult it is to really get that sleep but I am thankful for the few hours I do get to notch because I am aware that there are a few who cannot even get an hour. So irrespective of how beaten down you may be, just take a second to realise that there is someone out there who could with a sincere expression of love, humanity, kindness and compassion because it is only in giving off ourselves that we can truly make room for something newer and different.

I recall the teenager who after loads of tests (as usual) was finally diagnosed with idiopathic hypersomnia, which is an entire reverse of insomnia but I applaud her resilient spirit because nobody can take that from you. And what an awesome experience it has been for me, choosing to place that resilience (it needs upping sometimes) in the Hands of the One who is sure to stand by you through the gloom of the valley of the shadow of death because there is really no hiding place from Him but you have got to vote with your heart and feet and then trust Him to do the rest. It is definitely no bed of roses but you know that you are never walking alone, and that feeling is priceless because no matter how much, a friend, brother, acquaintance pledges to be there for you – this is your journey and they have got yours so save yourself those heart- wrenching moments of despair when they just cannot fit you into their plans, remember it is their plans, not yours and there is only One whose plans for you are true and He will also be there walking you through them but you have to vote with your feet and heart, begin with a sincere conversation with Him and give Him room. I have done that and it sure keeps me going when all else fails.

I have learnt to continue giving for as long as I have got something to give and amazingly there is always something to give but you just cannot let the thought simmer forever in your heart, get those feet moving. Stand for something at the very least or like the crowd on the bandwagon, you will fall for anything. If you have truly experienced the pleasure of seeing that glow light up another’s face when you can share something positive in deeds then that alone is a dead ringer that you are more than just mere statistics. As each day affronts us with its myriad of opportunities, let us do less of words and more of action because you will be remembered not by the words you spoke but by the actions you took – and it begins with casting off that indifference and nonchalance and actually doing something. Thank you for the likes of gorgeous Ure, Funsh with his persistence even if he always has to say the last word, Estee for simply wanting to be different, solid Lola, amazing Shirls, Dee and HCM and a host of many who have been raised up for times such as these. I am giving back too and will continue to because life in itself is a test and you either choose to take it or be forced to take it. It is such a beautiful day indeed and yet again, I see hope even as the morning rays make their way into my room. Grab the opportunity and actually do something for a change – givers never lack and that is why I have chosen to be one. Anyway I really cannot afford to lack more than I already have but with each day, I know it is gonna be better than the last.

Remember what woes of miseries betide they who are simply existing when you can truly experience a life of purpose.  I cap my thoughts for now and see what catnaps i will get 😀

lמסתדר טוב עד שניפגש שוב בזמן שלו

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!