Constrained but not confined……

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constrained motion

Constrained motion…

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

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

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

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

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

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

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

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

ייתכןשהרוחות תמיד תהיה לטובתך עד שנפגשנו שוב!

Adios!

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!