Never Alone…..


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




DIFFERENTIt is yet another beautiful day as I look out my windows and just enjoy the stillness of the moment. To many, it is just another day but for a few, it is a new day completely replete with its own portion of ups and downs, joys and despair, achievements and failures – summarily it is a different day. With a temperature of 17oc, it is truly an amazing day to possibly get atop a power bike and let your hair down even as the wind courses through your hair and reminds you with startling clarity that you are alive in today. Remember that today was yesterday’s tomorrow so if for nothing at all, bask in the fact that you made it through.

I recall vividly with a smile creasing the corners of my mouth, one of the very first lessons instilled in me by arguably one of the greatest men that has walked and is still walking the earth. My father! “Always remember that the greatest battle we all have to fight is to constantly be ourselves in a world that persistently and consistently wants to make you someone else.”

Now, I can understand the meaning of every word in that sentence and wish today to share it with you even as you take out time to go through this piece. Of-course, there are a million and one things vying for your attention but Opportunity Cost….right? As at the last time, I paid attention, it was said that billions of humans inhabit the earth and guess what, there are no two identical humans. Siamese twins? Nope, I am getting down to the nitty gritty of high school biology – the chromosomes and genetic make-up can never be the same. In other words, there are billions of different humans inhabiting this earth and so the questions comes a-begging, why settle for something less than who you were made to be? Different.

Last night, I watched Piers Morgan as he gave room for David Cook (I think) to let us into his mind (he is presently incarcerated for life for murdering both his parents) and what really stunned me was when he was given the opportunity to reach out to those who could be contemplating similar acts. In his words, ‘I know what you may be going through right now, and the events that may be pushing you to take that plunge. I can assure you that I have been there and it is not worth it……..’ Now that brief clip reminds me yet again that irrespective of the circumstances life seems to always leave you in, there is the issue of making choices. And because we are made to be different, we all have to make different choices.

Now one of the ‘beautiful’ things about being dystonic, is that without seeking my consent, I am compelled to be different; the very thing I have always strove to be. Now it makes me doubly different, isn’t that just a blessing. And even with this incapacitating pain that recently began on my right foot and the traction devices that I wear regularly to ease the cervical tremors and the pains of sitting and/or standing (I only need a costume to complete the look because the world really needs super heroes). Living with dystonia is a blessing in disguise, funny right, considering that there are only about 70,000 UK residents living with dystonia so that makes us a small community and being able to be on the same page with even a tenth of that is simply an awesome opportunity and a unique pedestal to reach across and touch the lives of just a few persons beginning with that one person.

Why are we so scared to be different? What prevents us from daring to be different? Care to know what my answer is? Nobody or nothing, just YOU. I was talking with an old high school mate and making him aware of dystonia and as he was expressing sincere concern for my well being, I reminded him that sometimes, especially when least expected, life has the funny habit of throwing you a curved ball and you had better swing as hard as you can because that ball just has to be dealt with. And mind you, those balls are hard and can really hurt when taken in the face of the body. So keep swinging, practice makes improvement.

Vivian Stanshall captures it so succinctly in these words I’m not different for the sake of being different, only for the desperate sake of being myself. I can’t join your gang: you’d think I was a phony and I’d know it.” Now what better way to express life’s greatest battle – a desperate fight to be different, heck! That is how you were made. The worst life lived is being on the band wagon with everyone else, you do have company and you are just another face in the crowd but then what happens to the real you. Sucks! Why not dare to be yourself? Be proud of who you are because these days, if you don’t blow your trumpet (by being yourself), someone else is going to take that unused trumpet from your limp hands and blow it for himself.

Begin today when you arise from your bed or wherever you passed the night and look yourself in the eye – use a mirror or get to the nearest puddle, and behold an astonishing Masterpiece. If the Louvre in France can hold such a collection of acclaimed masterpieces created by individuals just like you, what prevents you from creating your own niche regardless of how small it may be? The world is large enough for everyone and sometimes when I pass by the cemetery, I wonder how many undiscovered geniuses are entombed there with nothing but just a few words etched on their headstones and some distant memories left behind with just a few persons. You can begin today, but remember that even as kids, your first fistfights hurt like nothing you were prepared for. So be prepared, this is a fight that is going to call upon every lesson that you learnt or should have learnt along the way.

For many of us, Elijah Woods is just a kid but hear what he has to say (which again reminds me that age and wisdom are not directly proportional) “I think being different, going against the grain of the society is the greatest thing in life”…hmmm! Age is indeed just a number, what counts for us are the amounts of trials we have gone through and emerged scarred but triumphant. Today, we are yet again faced with a choice. Deeply contemplate these, the choice to be you, different and unique or to be just another fleeting memory in the minds of a few. There is the choice today, to dust yourself up and start to live a life. The greatest tool in the world lies within you, remember that centuries ago, people just like us without the most obsolete equipment but just their hands almost put up the world’s tallest building. They wanted to be different, what is that thing preventing you from reaching out and changing lives for good, starting with that one person.

As I exchange experiences with my friends all over the world living with dystonia, my message remains the same – We are the ones responsible for making the choice to live a life that counts despite the handicaps and limitations we face. Nobody can change your life for you, only you can. And it must begin with a critical self assessment of who you really are and even if I have never met you before, I can say this about you – there is just one of you and that makes you THE ONE (like Keanu Reeves role in the Matrix). Make the right choices, ascertain what you were created for and plunge into that uncharted territory. You are a winner, I am rooting for you.

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

 פרידהעדשנפגששובחבריםיקרים ….