Let’s Begin Again…..

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Anew!

Never been to a real AA meeting however I know it begins with an introduction; name, your reason for attending and as much personal information you are willing to share with a bunch of complete strangers, who with time become a small part of what you may term friends. I choose to say that a very few would become a part of your family. I am an ordinary chap – going nigh on half a century chronologically however physically most days I’m more in the nigh on century milestone. I’m a hybrid which can be interpreted in a varying degree of ways depending on what perspective you look at it from. I wouldn’t say a peacock is my bird of choice although I’m a dog lover and not an avid bird watcher, so a Caucasian Ovcharka would therefore be my pick as my animal companion. I am a Christian with a definitely colorful life – having lived and worked in 4 continents playing a huge role in that. Temperamentally, I am a CholMel (Choleric and Melancholic in that order and mix) and I am living with dystonia and myoclonus – primary generalized dystonia to be a bit specific. I was officially diagnosed in 2011, which makes it at least 8 years with no vacation or holidays in between each day.

Statistics reveal that there are 3 million cases of Post Traumatic Stress Disorder diagnosed every year in the United States where I currently call home. Even with my stint in the navy more broadly, law enforcement, I don’t suffer from PTSD. I still have battles everyday although since Christianity isn’t a religion so it cannot be called an opioid, it’s rather the lifestyle I’ve chosen and live by. I tend to describe myself as a very good listener and like the philosophy that comes with life. I’ve been described as enigmatic, prickly skinned but with a beautiful heart – I guess the point is that my range of description depends on the level of relationship I have or had with you. My IQ is above 100 and I’m conventionally educated (spent about 19years doing that), still learning and teaching where and when its possible. I am heterosexual and pretty good at being and staying one. I love writing (and speaking, if asked to), pretty good at whatever I set as a goal, I still do have a fairly long to-do list which includes but isn’t limited to swimming with sharks, paragliding, parasailing and traveling to 3 more continents and Mars someday. I suffer from obsessive compulsive disorder but I control it much better not the other way round. I live with faith and hope and the awareness that life is a series of seasons.

Strewn along

I am quite imperfect and very much a Work-in-Progress, choosing to get up each day with a ‘Thank you!’ rather than ‘Why?’. I have a relatively skewed ratio of good and bad days, in recent times more of the latter which in no way influences my daily choice. I don’t have regrets even though quite a few of my also few friends have transited this earthly journey, their sojourn completed. Admittedly, it’s a really cold world we live in so I’d say the inevitable mudslinging and lemon chucking still hurts probably more now however I do clean up fairly okay. I have about 8 walking canes because I also suffer from intense vertigo and unpredictable bouts of pins and needles, and on the losing end of requiring to get a stroller which in relative terms for me sits a couple of steps above a wheelchair. My regimen of medication consists of a good amount of category C drugs and few Over-The-Counter medications which I lug around with me…….all translating into several discarded shoe boxes of empty pill bottles and a very upset asset of the pharmaceutical industry with an equally rather poor notion of the insurance industry. I know that people rather know how much you care, than care about how much you know.

I am very weary but still I must go on because how you run your race determines what price awaits you at the finish line. There’s nothing that can break a defiant and determined spirit except you give in to it and that’s what I hope to share more. There are no better helping hands better than those at the end of your arms and for my friends with no hands or arms, you still have what will propel you through the rather frequent desolate seasons. There’s no oasis better than that in God who created and created all things with the best quality control, and therein might be my message to myself. It’s not impudent to ask for help but the results are guaranteed when we ask Him because I know He knows what I’m going through and has made the appropriate resources for this sojourn of mine.

There are times when it feels like the end of the road for me, nothing more to give, still nothing more to gain however I know that it’s in those times that He’s closest to me and so even when even the melatonin refuses to work and my muscles constrict in agony, seeking for relief from an overly active brain firing away on all fronts, I still choose to say ‘Thank you Lord!’ rather than ‘Why me Lord?’. It’s in those moments like today that I remind myself with this quote, “I was given this life because I am strong enough to live it!”

עד שדרכינו יחצו שוב, תנו לאהבתו ולעוצמתו להנחות אתכם!

Adios!

Clearing Debris….

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Sometimes it just seems like our lives are a kitchen sink filled to the brim with clutter- dirty dishes, dirty mugs, used and discarded cutlery. And a few inches above, a window cracked slightly open but with the sill in dire need of attention. More often than not, we do not even realize how cluttered we are until we are desperately in need of a clean plate for a meal that we so longingly crave, as pang upon pang of hunger hits us. Sometimes, we are confronted by circumstances that, had we been given an option, we would not even want to imagine it.

It has been about a week since Hurricane Harvey and although I’m careful not to write about trending issues, (life is more than a carpeted runway in a fashion show) this was a life transforming event for many. The very things that we want to know, in retrospect, have no benefit to us in the long run. Humanity is often clouded by hastily taken decisions, bordering on sentiments that have no lasting power and like the wisps of smoke from an extinguished camp fire, we watch helplessly as the smoke dissipates into the air. We long for the warmth of the fire after it’s put out and usually we are oblivious to the fact that right at the edge of darkness, a pair of feral eyes glinting in the dark is the only evidence that we have been spared from more than just the loss of the campfire.

In my opinion, it comes across as a slight blend of annoyance and irritation when in the aftermath of a storm, someone comes across and without tact, utters the following words beginning with “if I were you…..”. How on earth could you ever be me? That statement in itself is tantamount to ridiculing the order of existence. We are all individuals of unique capabilities and purposes, and therefore flaunting your naivety is not by any standard, a measure of intelligence. To this day, I recall how destructive a storm can be but amidst the storm, there can also be a peace that trounces the storm. In my sessions of encouragement, I usually reiterate how life transforming some events can be. Considering the transformation is probably going to be the content of the next post however how we deal with the transformation tells more about us than we care to share.

Summoning up courage to see the positive in the transformation, a transformation that we all must face in one form or another, is best experienced. It is easy to be cheerful when our bellies bulge with the cuisine of our preference, when our pockets sag with the weight of gaudy trinkets and gold sovereigns. It is easy to encourage another when there are no ruffles in our every day lives but what happens when the very things we inadvertently and often unwittingly depend on is taken away? When our brains freeze in distress and panic and the usual praise songs seem like a burden of irritation? Can we at that point, realize that clearing out debris from another’s house is way different from clearing the debris from our own homes. How effusive our condolences are when the mourning is another’s but the true definition of your values is seen in the nudity of our fundamental beliefs.

Driving around town and seeing streets constricted by the debris and unsalvageable items left in the wake of H.Harvey is yet another learning point. There is no rejoicing over that, neither should there be any guilt that nothing of yours was lost. The basic tenets of life are in full display in the aftermath of the storm. I see the sadness in the eyes of those who have been forced to lose houses, cars, antique pieces. I hear the hollow echo in their words as many struggle to come to terms with the fact that the house that has been in the family for generations has been reduced to rubble. The desperation that comes with the knowledge that there’s so much the insurance companies can do…..then is when the question should be asked, “where have you stored your treasures?” The transient treasures of this world lose value in the face of catastrophic events like receiving a diagnosis of an incurable medical condition. Nonetheless, it is not what we do with our blessings that is the real test, rather it is what we do when the blessings are taken away?

I recall purchasing my very first cellphone, a Motorola Accompli – I had scoured through newspapers waiting for that discount to be published. And when I added up the dimes and nickels, my joy knew no bounds as I pushed open the phone dealership to finally lay my hands on my dream phone. It had taken a significant portion of a year and almost all of my savings, but it was all worth it because now I has dreamt, woken up and achieved the dream. My moment of truth came as I was crossing the street with my new phone cradled under my arm…..”what would happen if my dream phone suddenly fell from my hands, and despite my best efforts, meet its untimely demise on the tarred road?” Shattered with no hope of being put back together, what would I do? That was the defining moment in my life because there and then, I realized that we are each responsible for the extent our blessings hold sway over our lives. That moment of truth shaped my life and regardless of how cruel this might sound, we need to clean out the debris and loss from the storms we encounter.

It’s not ungodly to be saddened by the loss of what we built with our hands but have we taken time to realize that its rebuildable stuff thats been lost and not our hands. There is no sense in battling the undertanding that till we let go of the old, we might never receive the new. It is only when we let go of what we have in our hands, that God can actually use it. And who can better the old but the manufacturer Himself? There is no insurmountable grief, no helpless battle instead there will always be you and I who have, for some unfathomable reason, refused to just let go. And till we let go, we will simply sink further into the bog. Behind every debris is not just grief and loss but there is also open space to truly delight in. Embracing the fact that we are able to trust One who has never and will never hold back the very best for us. We might not see the best as we look at the clutter in our lives but we must look beyond to enable us receive that which will always be His best for us. It is not about us putting the puzzle together, it is more of letting go and letting Him and even if we do not understand now, there will come a time and place where the fullness of knowledge will come upon us.

עד ניפגש שוב, תן את היופי של ארשת פניו לזרוח עלינו!

Adios!

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!