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!