Never Alone…..

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Never alone

“I feel too much. That’s what’s going on.’ ‘Do you think one can feel too much? Or just feel in the wrong ways?’ ‘My insides don’t match up with my outsides.’ ‘Do anyone’s insides and outsides match up?’ ‘I don’t know. I’m only me.’ ‘Maybe that’s what a person’s personality is: the difference between the inside and outside.’ ‘But it’s worse for me.’ ‘I wonder if everyone thinks it’s worse for him.’ ‘Probably. But it really is worse for me.”

― Jonathan Foer

I kinda said I was gonna allow myself properly reminisce, more appropriately marinate in the events of the past one year and start out with a stronger purpose. Give myself the personal experience of savouring the stillness of the calm after the storm but just when it seems like I can take no more, I am buffeted more strongly than ever by the complex nature of my situation. I have long learned the  difference between sleeping and resting, and even though I shut my eyes in sleep….rest is more elusive than ever, as my system deals with sensory overload in an attempt to reconcile my outside with my insides. Borrowing the words of my guardian angel ;mvo St El Gee, smiling in the face of pain, loneliness and sometimes abject frustration at my inability to do those things that I so eagerly want to do, is something that has become part of me. And though this walk is far from over, I tell myself that I can not have made it this far just by myself. I acknowledge that there is One who alone rules over my affairs and I choose to daily trust Him to do the reconciliation because I have long given up on my own ability to. I make that choice everyday.

I miss LBJ so much that our last conversation tore my heart to shreds, still I know that pain usually precedes pleasure and I remind myself with teary eyes that the pleasure will make the pains disappear…..someday. I feel the pain of a suffering world; the wife and mother/husband and father abandoned, the loneliness of the ailing and elderly, the emotional dearth of a loving but unloved partner, the hurt of a desperately cast aside sibling, the silence of words that need to be said but remain unsaid, the labours of so many unsung heroes, the brittle facade of so many around me and it just seems that I am so helpless to do all I wish I could do. I know that I don’t have as much to give in terms of materialistic possessions and the truth is that, what we need is much more than that, and so I give of myself over and over, confident in the knowledge that I am also giving to myself. Where has the love gone to? That is certainly more than I can deal with now, because I struggle to tell myself yet again ‘why are you so downcast, o my soul. Just put your hope in God….’

I beheld the arrival of this year, and like a child, I am absolutely fascinated by the beautifully wrapped gift of 2014 and with a resolute heart, I know that the gift inside is worth more than the wrapping and yet I choose to savour the entire package because it is those little moments that are ours to cherish for as long as our senses can function. I opened the door, with the swirl of the chill winter winds wrapping her beautiful fingers around me and there lay my beautifully wrapped gift. I stand alone, save for my staff of authority worn by the numerous times I have clenched her with fingers hurting as I laboured with each step – joints hurting, my back a mass of unceasing pain, over-riding the cry of my feet to take a rest….. I stand alone and yet I know that even in the darkness of the dawning day, I am not alone. How do I know that? I can not have made it this far all by myself, each phase accompanied by an angel sent on assignment just for me. I know that despite all the battle scars I bear, I am not yet a victim but truly more than a conqueror. I bear my gift even though my back screams out in pain, I know that I have received a gift and for that regardless of the pains and tumultuous feelings that assail me, I am thankful. Thankful that I have a gift, and not just any gift but one that I can and choose to share with as many as I come across.

There are more reasons to be thankful for, much more than the days of bleak darkness and frustration. I am thankful for the fact that through it all, He is orchestrating it all for my good and yes I really don’t feel like a super hero today, but I know that weeping might endure for a night but joy must surely come in the morning. Yet so many knots still unravelled and some unravelling, I can only appreciate the gift of the now because sufficient for each day is the evil thereof but in the end good always prevails. I choose to apply myself to giving to others because if you really want to do something with your life then there’s only one proven avenue – do something for another person without necessarily waiting for a payback. Pay it forward because we have all been recipients of more blessings than we can enumerate.

My body may yet be a far way from being what it used to be, however I have fought and will still fight, no white flag is going to hang by my door for as long as there is still breath within me. With gritted teeth, I say ‘throw what you have at me, you elusive neurological disorder, I am still standing. And regardless of how many times I am thrown down, gut punched, desolate….I am still standing. You cannot and will not take this gift from me, it is mine and mine to share…’ and so even as I wipe the tears from my ears and pick myself up onto rubbery legs, I will still plod on. I may not have the fanciest or the sturdiest of steps but I choose to move forward because my victory resonates with each forward step. I have lost many just because they refused to cross the road but I have also found many. I am thankful for the opportunity of parting with a select few decades ago, just to truly experience the indescribable joy of meeting again. I am thankful for the nights of weeping because It made me more human than I thought was ever possible. I am thankful for being able to just listen to the hurts that many have harboured, unable to share because they felt nobody would understand…..I do!

With each moment of my life, I choose to share my gift irrespective of whether you choose to share yours with me and as each day winds to a close and I watch a new day dawn, I know that this is my path. Untrodden and surrounded by thorny bushes, I still glimpse the beauty of a rose here and there as I forge ahead and to you my very own saint, I will not give up because we need each other. “I dreamt we walked together along the shore. We made satisfying small talk and laughed. This morning I found sand in my shoe and a seashell in my pocket. Was I only dreaming?” – Maya Angelou

It takes nothing to dream but it takes grit and guts to wake up and live that dream. I am living mine……….with you.

פרידה עד שנפגש שוב בתזמון שלו עצמו

Adios!

Stripped bare……

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Stripped n bare

“You must not lose faith in humanity. Humanity is like an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty.” – Mahatma Gandhi

Admittedly, I have been yearning to get back to doing what I love best – this! however it has been a tumultuous period in the last two weeks and just when I desire to get back, something else comes up and yet still I strive to do my own little bit in the lives of the few people who I have been blessed to encounter. Now it feels like what has been dammed these past weeks just wants to gush out and that would inadvertently drown quite a few including myself and so I have to apply self-control or stand the risk of sounding like a blithering idiot. Like I have chosen to inculcate, each day is such an amazing experience whether I am down under, burdened by the travails of this medical challenge and besought by the emotional desolation that so doggedly accompanies this disorder or I am infused by the joys and beauty of life in every waking moment – I choose to make each day count because every day is a Present in itself and like a kid, I carefully unwrap it…….I cannot do otherwise anyway, being obsessively compulsive has its pros.

A few days ago, I travelled to beautiful South Yorkshire and even though travelling is wearisome and I have to make it as comfortable as possible, it is still a necessity. I actually fell in love with the region and above all I loved the fact that it was colder than London because I have learnt to accept that I am also a Super hero – Mr Exothermic, that is also one of the merits of this condition – accelerated metabolism enhanced by the regular tremors I experience, which translates to the need to be in a cooler atmosphere than most people would like. I was privileged to meet Ibrahim, Mark(s) and Hilary – sharing the stories of their own lives and the beautiful attitude they exuded even whilst doing their jobs. Such encounters make me realize that you can choose to continue to mourn what may have seemingly be lost or choose to celebrate that which you are blessed with finding each and every new day. Of course there were the ignorant ones who thought the shakes were quite amusing or those who seemed to be freaked out by my super hero outfit. All put together, it makes every day such a blessing because I know something that can never be taken away from me as long as I breathe – everything is working together for my good. Try as hard as you may, deride me, ignore me, withhold from me – I will still smile because you don’t and can never define me.

I am dedicating this piece to Carrie Ann who has finally bested dystonia and every illness, today she stands on the other side victorious and free of all disorders and disease and whilst her passing is painful but yet again it presents us with an opportunity to live our lives continually grateful that we were blessed to know her.

Amazingly, it is no news that we may be having the best winter since 1947 and honestly I look forward to it – weird or not! Every time I gaze out my window overlooking the front lawn, I am drawn to Miss Betula Lenta (the Cherry Birch tree) and as usual she stands stripped and bare as she is readied for the months in winter. To many, she has lost her beauty and appeal – gone are the chirping birds, gone are her beautiful leaves, gone are the exquisite buds…..however she still stands and teaches lessons that are priceless if only they can be grasped. If only we can but stop, dare to liberate our minds of all the meaningless junk that we have chosen to walk with and just learn, what a world of difference it will make to us as individuals and creatures of purpose. WHAT A CHANGE THAT WILL BE WHEN WE LEARN AND REALIZE THAT WE ARE FOR CREATED FOR PURPOSE!

How much I love these words ….“Let’s tell the truth to people. When people ask, ‘How are you?’ have the nerve sometimes to answer truthfully. You must know, however, that people will start avoiding you because, they, too, have knees that pain them and heads that hurt and they don’t want to know about yours. But think of it this way: If people avoid you, you will have more time to meditate and do fine research on a cure for whatever truly afflicts you.” – Maya Angelou……because humanity is like the ocean and its beauty is not defined by the few dirty drops. Walk with the few that God raises up for you when you are in need, determine not to dwell on the many that avoid you or that ignore you or worse still, the many that utter loads of balderdash and do absolutely nothing. My life, stripped and bare it may seem now is just a phase that is a precursor to the beautiful seasons ahead, and guess what, I am better off each passing day. I choose to continue to give from what I have, and whilst I may not have by the standards of many but I am so enriched each day by countless blessings that I have become attuned to appreciate even as I stand bare and stripped. And I am grateful to be stripped of all what I do not need now for this season, because it is such an awesome time to really acknowledge what I freely receive – from the new friends that prop me up each day to the lives that I can associate with despite their pain and challenges. I am thankful to be stripped of what has so long burdened me so that I can receive anew what truly counts.

I have seen seasons, experienced the lows and the highs and I have come to acknowledge without an iota of doubt that life in essence is simply a journey and each of us has a choice to make regardless of the circumstances we seem to have been thrust into unwillingly and seemingly without preparation. To realize that when we are forsaken by many,  it is yet an opportunity to be accepted by others. To acknowledge that when we are deprived by those that we thought would stand by us, it is yet an opportunity to give of what we have to those who stand alone like us and be cherished by others. To acknowledge that when we are disappointed by many, it is yet an opportunity to be a source of encouragement to another – choosing not to focus on the bleakness but painfully lift our eyes beyond and grasp the beauty of what lies just ahead. Acknowledging that when we can no more do what we used to, it is yet an opportunity to reach deep and pull out the potentials that have hitherto lain dormant within us. I choose to make the most of what I am blessed with daily, taking the taunts and the indifference and turning it inside out to be a stronger and better individual because the journey is one of endurance, perseverance and unrelenting faith in a Father who is able to perfect that which He alone began.

“How far that little candle throws his beams! So shines a good deed in a weary world.” – William Shakespeare

I am ready for the winter!

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Keeping it real…..

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I hate travelling but again that is a necessary evil. A complete turn around from my pre-myoclonus era where travelling was so much fun and one of my hobbies. Anyway, life is not fair because life in itself has been tarnished and tainted and still is and so just being yourself is one of the most difficult challenges you can ever dare to undertake. I recall the tale of the tale of the simple lady who was invited for lunch at the Queen’s request on account of her widespread gestures of concern for everyone she ever came across, and when she was interviewed on what set of manners she intended to display during the courtesy lunch, her answer has always been one of my fundamental principles “I have only got one set of manners and that is who I am“…..impressively profound. In the course of my travels, I have come to acknowledge that life is much more than an endless pursuit of fame and wealth and recognition, a concept I wholeheartedly abhor but one that appeals to majority of individuals – ‘it is all about the green backs!’.

Being cast into the physically challenged category has been an eye opener in many regards and a completely new field of learning for me. I have come to appreciate that being able to do anything at all is something worth being proud of, so pause today, take stock of your abilities (regardless of how little they may seem) and say a word of thanks to Him that has blessed you. I recollect the many times I have been forced to take a large dose of patience pills just because insensitivity abounds and is largely becoming a second skin to many individuals, waiting on board many an aircraft whilst all passengers disembark just because I have special needs and being subjected to hurtful and derisive looks and remarks because we have largely refused to be human in our everyday living. And now, I know that wherever I meet any individual striving with some form of physical challenge, I choose to pause and salute their bravery because being yourself without any form of inhibitions is difficult enough without adding on some form of physical challenge.

Each new day is filled with its own share of troubles but remember that even when life throws the kitchen sink at you and knocks you out, wake up with the courage to still be yourself but duck next time where you can. “Sometimes it is just easier to tell a stranger than to tell the people you are close to. The freedom of speech is my liberation from solitude and if you should take that negatively or with annoyance then that’s on you to look the other way” – Nicole Hill. I have come to realize that so many of us are absolutely terrified of even attempting to discover who we really are and so my question is if you are scared to define or know who you are then what business do you have at attempting every other thing because life consists of not just knowing who you are but being bold enough to stay true to who you are. I may not have been born a quadriplegic but even if I were, that is not who I am. People ask me a lot if I was born this way, and amidst my answer lies this truth – I was born for a purpose and I dare anything to make me believe otherwise. Behind my smile, lies a whole lot of pain and an unappealing  bouquet of other discomforts but I choose to still be myself irrespective of how unfair life may seem presently.

Today marks a new beginning, and I walk in that knowledge knowing that even in chaos, God can work out order and harmony. Vacillating between many personas just goes to show how shallow your understanding of life is because as long as you fail to accept yourself for who you were made to be then yours will just be a charade for people with understanding to learn from. Each time the dime drops, I dare to bend over and pick it up even if it means exposing my backside for life to kick me over but guess what, you still have the dime in your hands so pick yourself up and do something with what you have got in your hand. Desire to dream but do something with what you have now and stay true to who you are. Many extraordinary individuals have opted to jettison their right to choose to be themselves for the sake of a life of pretense and despair in order to maintain a facade that hides sheer cowardice and stagnancy. Always realize that ‘No matter what you do in life, your words, your actions, your looks, your thoughts, you are never going to please everyone’ – Nishan P. so what is the point in embarking on a fruitless venture when you have a unique life ahead of you?

I am constantly stunned by the sheer audacity of individuals who are hell-bent on trying to be what the world wants them to be – by choice of career, relationship etc, many are actually skilled at blaming others for daring them to be themselves, hurling and trading insults every time you scratch their fake veneer. – because if only they could channel just a mite of that energy into discovering who they are then maybe, just maybe we will find ourselves being more loving, more accommodating and more sensitive to the lives all around us. For every time, we choose to make our lives more meaningful by doing those little ‘grand’ gestures to those around us, what a doorway of anticipation and self-development opens up for us. I will never know what it means to be perfect just yet but what I know is that I can be myself despite my aspiration for perfection someday and choose to make my own life an example for as many as I come across. That is my watchword even when the days seem so lonely and my journey unending, I will stay true to who I am.

I have to live with myself and so 
I want to be fit for myself to know.
I want to be able as days go by,
always to look myself straight in the eye;
I don’t want to stand with the setting sun 
and hate myself for the things I have done.
I don’t want to keep on a closet shelf 
a lot of secrets about myself 
and fool myself as I come and go 
into thinking no one else will ever know 
the kind of person I really am, 
I don’t want to dress up myself in sham.
I want to go out with my head erect 
I want to deserve all men’s respect;
but here in the struggle for fame and wealth 
I want to be able to like myself. 
I don’t want to look at myself and know that 
I am bluster and bluff and empty show.
I never can hide myself from me;
I see what others may never see;
I know what others may never know, 
I never can fool myself and so, 
whatever happens I want to be 
self-respecting and conscience free.

These beautiful words from Edgar Albert Guest, painstakingly learnt and memorized in High school are forever etched in my memory. Make today count because that is all we each have got, and be mindful that when you do, you can cherish them tomorrow.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

 

Family of strangers?….

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In the family, happiness is in the ratio in which each is serving the others, seeking one another’s good, and bearing one another’s burdens.” – H.W Beecher

Today, I met Angela at the bus stop and summer is finally over (what a beauty the weather is…). Angela responded to my ‘hi’ and despite the drizzle, we both agreed that it was such a wonderful weather. Noticing my tremors and my staff of authority, she enquired more and having never heard of Movement disorders or Dystonia, I was pleasant enough to show her my health card which explains Myoclonus and describes the symptoms (saves me from having to do much talking) and in addition, states my medication. Quite a handy card, I will say. Being a little bit distraught with what she read and observed, she kindly helped me into the bus 29 and shared my seat, peppering me with questions borne with loads of sincere care and concern. A grandmother of Irish descent, she encouraged me to visit Ireland someday and complemented my sense of humour and cheer despite the ominous words that describe my condition, before getting off a couple of stops later. With an extra boost to my spirit, I continued onwards to my medical consultation acknowledging that I can never be alone no matter how bleak the days may seem. I have got a family in over seven billion people.

As a little kid, one of the phrases continuously drummed into my ears and passed on from generation to generation is ‘Do not talk to strangers!’ and as the years fell away and maturity set in, there inevitably followed a change in perspective and a greater appreciation of these childhood phrases and the appropriate application of wisdom and understanding. I recall vividly the story of the Good Samaritan that back in the days was as good a bedtime story as any and the underlying meaning behind the story: good neighbors (family) are those who help when you are in need and in the words of Archbishop Desmond Tutu “You don’t choose your family. They are  God’s gift to you, as you are to them’. Now I have truly come round in my little circle of life to appreciate the depths of these words, family is not defined solely by blood but by a genuine expression of concern and affection and an unquenchable desire to help alleviate another’s burdens – that is what makes family. And as I plod through life, I am blessed to meet family in every race, of every age, tongue, religion. Hey! we all have one origin and One Father and so regardless of the inactions of a few, how doth that measure against the over 7 billion that populate the earth?

I love almond nuts, cannot seem to truly encompass the beauty of those little nuts but I sure do love them. On thursday, I met Dee for the first time, all the way from the States, my first meeting with a stranger who had heard of me and had determined to squeeze out some time during her hols with her large family to say hello. Knowing of my love for almond nuts, she had walked into a departmental store in the States, purchased that bag of almond nuts and travelled with it all the way just for me. What an enjoyable period of time we spent, talking about my challenges, the current medical procedures, life, hope and above all, the faith that so unerringly defines and dictates my life. Now many would say, what is a pack of almond nuts compared to my regular weekly medical expense of £150 at the very least (excluding consultations), and my response would be that life is not all about money. Without the thought, there can be no giving and the pack of almond nuts was and is a clear case of giving. Dee, in those few hours, alleviated my burdens with her light hearted chats and lovable personality. Affection, care and concern are not resources that have a price tag, it is an expression of true familial ties, one borne from choice and not dictated by ‘tell me if you need something and I will be family to you’.

I opted to attend my high school alumni meeting on Saturday because of Dee. Having made a hash of my directions, I paused to get some rest from my severely aching back and tired legs (just to mention a few) and then across came Ian as he hurried along ostensibly to meet up with a pre-arranged meeting. Stopping by, he enquired if I was ok and in response to my stuttered need for directions, he pulled out his iPad phone, dropped his duffel bag, typed in my destination and then pointed me on my way (my destination was just two apartments away). “No worries,mate” was his parting words to me as he retrieved his duffel bag and watched me head in the right direction. As I contemplated on the kindness of a stranger, these words hit me “I don’t care about whose DNA has recombined with whose. When everything goes to hell, the people who stand by you without flinching — they are your family.– Jim Butcher

A couple of days back, I just had to do some errands – (I live alone) and help does not always come when you want it but things have to be done. A letter to post, a return to be made at ASDA and because of my mobility requirements, I just have to take a break now and then or face the inevitable consequences of tremors etc. I stopped by at Precious Moments to pawn my ring and also grab a chair and then I met Goli, beautifully wrapped in her hijab and ordering a pendant for her daughter. Devoutly muslim and a mother of four kids, she asked what she could do to make my respite better and enquired about my super hero outfit, yet again out came my card and with a ‘La il laha il Allah, Muhammad a rasool Allah.’, she fussed over me and after I explained where my hope, faith and strength came from even in the seemingly bleak situation – there is but one God and for every season, I trust Him to lead me in line with the reason, she gave it some thought and then delved deep into her purse, extracted a ‘prayer’ and handed over to me. Bading me well, she concluded her business and I was astounded by her public, unpretentious display of care and concern. “Strangers are just family you have yet to come to know.” – Mitch Albom

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As I receive countless opportunities of meeting various people, i count it a privilege not just to share my faith, my convictions, my hope but also to realise that I am never alone. Surrounded on all sides by strangers, I can now say that “The bond that links your true family is not one of blood, but of respect and joy in each other’s life. Rarely do members of one family grow up under the same roof.” – Richard Bach.We are all blessed with so much to give and yet we choose to be so constrained by our self centredness, not realising that as we walk through life, we all have the opportunity to truly understand what a family of strangers that encompass us daily. And there can be no words that can ever eclipse the actions of our hands. I look around and am amazed at the mass of dead seas that persistently choose to receive and receive and receive, choosing to deny the beauty of blessings that amount to us if only we can but give from the little or the much that we are daily blessed with. For there is but one truth, and no amount of denial will upturn it – how blessed are they that give, for it is in giving that we truly express but a fraction of the love that we continuously receive from God above.

I can recall the conversation I had with my sibling several months back, when he so vociferously attempted to make me understand that the few friends that have stayed with me will someday disappear and I will realise that family is what counts (whether they act as such or not). Now in retrospect, I realise that the circumstances we find ourselves shape us to become better, stronger and wiser and so like Scarlet O’Hara, all resentment is gone with the wind because I not only know that some friends stick closer than brothers but that family is neither something we choose or is it only defined by blood but also sometimes and in some circumstances“Friends are God’s way of apologizing for your family.” – W.W Dyer (quite a quip, isn’t it?). The truth is that when we truly love another and unashamedly express it, then we truly embrace the beauty of family and realise with sudden clarity that we are surrounded on all sides by a family of strangers. All we can and should do, irrespective of your circumstance is stretch out a hand and help raise another up because all around us are countless hordes who are definitely unconcerned about how much we know until they know how much we care and then we can begin to change the world by spreading God’s love, one person at a time.

For the many like me, who are passing through such challenging times struggling with dystonia and movement disorders, realise that we each have a family of strangers who unceasingly pass through our lives for times such as these and whilst we are seemingly compelled to succumb to the whirlpool of despondency and depression, we can choose to stand tall and make a difference whilst we yet stand. “Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.” – Mother Theresa

Remember what a miserable tale ours would be if we choose to just exist rather than live purposefully.

lמסתדר טוב עד שניפגש שוב בזמן שלו

Adios!

Just do right….

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When you get, you give. When you learn, you teach!” – Annie Henderson

These simple words resonate through my entire being as I awakened to a new month, albeit a new day and I reminded myself that with each new day comes hope, help and loads of opportunities. Have you ever wondered why at certain times in your life, the things that usually go unnoticed suddenly assume an amazing degree of clarity? Or ever wondered what the entire purpose of being alive is? Or ever considered that niggling voice within you that insists you do what really do not feel like doing at certain moments? I believe that within each and every walking human, there is a purpose for being alive and whenever doubt assails you, be sure that you have acknowledged that purpose and are walking conscientiously by it. Hmmm! Pretty intense but that is the only way to be sure that your life counts for something.

It takes me 374 seconds to walk to the closest mail box and back, and yesterday just as I was struggling with getting my disobedient fingers to reach for my keys, I had the profound privilege of watching one of the most common wildlife events. I observed an orb-weaver spider diligently going about its interesting and intricate task of spinning its web. For many of us, it is an unknown fact that this seemingly simple task of spinning webs is not just a signature of most spiders but is an energy tasking one, usually requiring loads of protein. I really do not like spiders or crawly things but the beauty of the effort that went into the normal chore of most spiders was what interested me. And it made me realise that just like that spider, we all have been designed to excel in one thing and that is simply just doing right.

“I suppose there’s no good answer to that, Ryan. I wish there was. But if you take the wrong, path, something deep inside you will feel twisted. There are times when that will be the only way to know the right from the wrong.” – Inara Scott

Whenever I do get out, after loads of rest because of the energy sapping tremors associated with myoclonus, I am confronted with a myriad of responses from individuals – ranging from those who are freaked out and are frightened that it might be contagious to those who think it is a thing of amusement, barely concealing their smirks. Those who like Rose, have an understanding of the unique disorders of the human body and are eager to know more, and there are those who are unable to appreciate the fact that this is not something one would choose even in a totally inebriated state. There are those who flaunt the present wellness of their bodies and those who are unknowingly destroying themselves. However, the unifying factor amongst all these categories of humans is that we are all humans and so like Maya Angelou, I teach myself to recite this phrase ‘I am human and therefore nothing human should be alien to me’, that way I can deal with the barely concealed acts of insensitivity when I do encounter them.

I have actually embraced the Redcord therapy sessions (will put up pictures someday) because it is something new and even as Igor reiterates ‘you are a unique patient with a unique challenge’, I brace myself to continue to strive to do the one thing that comes easiest to a human, regardless of skin colour,  origins,  idiosyncrasies, or denials  – just doing right, (of-course in the effort lies victory). Whether we choose to acknowledge it or not, we have all been designed to do right and although we all daily wage battles within ourselves to stray from that divinely assigned task, that is our task – to just do right and regardless of how much pain I am in or how discomfited I may be – I want to do right, I choose to do right. It is so difficult wearing my own shoes and heck, some days just getting out of bed is so herculean but I have and am committed to that task because that is how I can improve myself. It is only when we acknowledge that we get, that the need to give can be properly birthed. I am given daily and so I choose to do right by giving as much as I get, being careful to sieve out the anguish of being ‘unique’ and give of the good I receive daily.

“If you are at a point in your life where you are not sure what you need to do, which path to take, or whether you are doing the right thing. That is probably because your inner being is wanting you to delve deep within yourself and find what you truly want from your life, Your spirit is trying to guide you towards your life’s path. Please take a moment to think what you really want to do that you haven’t done so far, and what would make you happy. That’s probably the answer to your confusion. All your answers are within yourself’ – A. E. Moss 

Now I am at a point in my life where I am sure of what I need to do because I know that happiness is a choice you have to make and for me, despite the loneliness of my sojourn or the looming clouds above, I am not giving in. I will continue to do right even if it means I get to stand alone. I will persist in doing right even when the stuttering wants to obfuscate the very words I want to say. I will persist in doing right even when it makes me different because I know that is what I was made to do and as each day draws to a close and I sit in watch as the new day dawns because I am unable to sleep, I know that I am further strengthened by the very One who is my designer and my Companion. When I realise with every passing moment that my life is but a journey, then I know that as I plod along, I can only but leave behind me legacies by the very actions of my hands and not so much by the words of my mouth. I can only do right by doing it, not saying it and pray someday that just one person will catch the vision and walk with it. That I dare to say is a life fulfilled.

What we can do, we must do: we must use what we are given, and we must use it the best we can, however much or little help we have for the task. What you have been given is a hard thing–a very hard thing… But my darling, what if there were no one who could do the difficult things?”  – Robin McKinley

It is indeed a new month and I always say it is better late than never. You can never go wrong when you simply just do right and so as I enthusiastically embrace the month with hope and determination, I know that within me lies the strength to not just triumph over this disorder but to also do right. As each of us, in his/her own little place begin to just do right, what an overwhelming tide of events we can cause to pervade our broken world. All it takes is to simply acknowledge that with the dawning of each new day, just like we welcome the breeze on our faces and bask in the warmth of the sun, so also we must acknowledge the good we receive and freely give just as we receive. Just do right, persist in it and behold the awesomeness of fulfilling your purpose daily.

Remember what a miserable tale ours would be if we choose to just exist rather than live purposefully. Just do right!

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!