Tag Archives: Myoclonus

Associating with knowledge……

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“A hundred times every day I remind myself that my inner and outer life are based on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving” – Albert Einstein

For the last two weeks, I have not only been in a roller coaster of emotions enhanced by the unpredictability of Myoclonus but had to shake off the feeling of being a dilettante and bestir myself from the bleakness of the present and focus on the beauty at the end of the tunnel and I must apologize for the short break from writing. Talking about the very things that constantly and endlessly swirl through my brain, which is one of the effects of insomnia, I choose again to make my life of some meaning whilst I yet trudge through this solitary journey, enjoying the company of the very few that God has placed in my path. In the last fourteen days, I have terminated some relationships, renewed some, re-birthed some and made a few new ones. For the very journey we all engage in would be as desolate as the cemetery without the presence of the variety of individuals we all come across – the good, the bad, the ugly and the different.

A couple of Fridays ago, I was opportune to attend the Old Students meeting of my alma mater, and expectedly it was a beautiful reunion; meeting with individuals after 2 decades and some odd years ago. Many had passed through before me, and ironically I was the baby of the group however there is nothing like a fora where you get to mingle with individuals, some of whom had left legacies or feats of daring and probably stupid acts. And as Pope John XXIII stated “Men (and women) are like wine – some turn to vinegar, the best improve with age”,  it was a stunning display of truth as we all mingled and regaled ourselves with old tales. Generations mingling with generations without the limitations of the dictates of high school. I was fortunate to attend one of the best Unity High Schools back in the days, of course with the usual mix of tyrants, bullies, the fair, the weirdos, the geeks, the beauties and the hotties. Unsurprisingly, each of us had some story to share and it was a beauty to see many who have distinguished themselves in their chosen paths.

Unerringly, tales swirled around experiences back then, the lives of those who had passed on and the opportunity to stand shoulder to shoulder with some who we had received a few slaps from, with those who had meted out corporate and non-corporate punishment. Standing with those whose names back then was enough to send us scuttling for safety. I recall vividly a couple of chaps who I felt were personally assigned to make my life a living hell, and also recalled the privilege of walking the same paths with the progression of years as those who had before us. I recall that as newbies, we were forbidden to walk on the pavement in front of the classes belonging to those in Upper Six (someone had aptly painted it red, so twas the red carpet for us and woe betide you if you had the boldness to step on the red carpet). We looked upon some as though they were giants and adored the likes of those who were remarkable enough to overcome the predilection for juvenile delinquencies and grasp the opportunity to positively impact the lives of those below them. Looking at schools today, one can weep because in our bid to give our kids what we didn’t have as kids, we have absolutely forgotten to also balance it with what we did get as kids – as a society, we are hopelessly shirking our responsibility as parents and as generations pass by, the kids have become the parents and we have devoted ourselves to doing their bidding.

One of my greatest appreciations is the years I spent in my alma mater and even though, back then it seemed as though it was horrendous especially in the early years but as the years progressed, I realized that without the experiences received back in the years, I just may not be who I have become today. And that is exactly what life does to us, sometimes it seemed as though we were (and are) being continually and persistently punished for just being there but guess what, our cores were being formed and just like I always say, we were making choices to be who we wanted to be regardless of the birthing pains of character development. Life is a process! I made friends, many I have lost contact with but the few who I am in touch with constantly sing the same tune – what a privilege it was to attend Federal Government College, Warri. What an association of brotherhood (and sisterhood) has been formed, one that with the years, forges bonds that are so strong but can yet be stronger. Scattered all over the globe, are individuals who were thrust through the furnace of FGCW and have emerged stronger and better. some more vile, a few departed but alas we are still a result of our choices.

Primolevi says “In modern times, it is only by the power of association that men of any calling exercise their due influence in the community” One truth rings clear, we must exercise our due influence in our community but the question that always go unanswered especially when men and women gather is what does our community really care about – how much we know or how much we care?

An old Swedish proverb that once hung down the rafters of ‘Ye Old Tavern’ Ronneby, Sweden says that ‘happiness when shared is double happiness, and sorrow when shared is half sorrow’. Looking around, we are witnesses to so much sorrow borne by ourselves and others and whilst some of us are capable of handling theirs, many around us are almost consumed and overwhelmed by their portion of sorrow – be it physical, emotional or spiritual. There can be no clearer appreciation of the labors of other men in our lives if we choose to turn a blind eye to those who are in dire need of a shoulder to lean on. There are needs to be met, and  it takes a supreme effort and a clear understanding of our purpose on earth to go beyond just asking ‘what is wrong with you?’ and actually do something. Yesterday, as I shakily boarded the bus, Madge (the driver) bellowed several times “Can someone please give this disabled man a seat?’ and as I made my way to the vacated seat, I cringed at the obvious term but I have refused to allow that becloud my ability to convert the little I know into expressions of care. Associating with my family of strangers, be it for a few stops or a few minutes, to let them know that I will not succumb to Myoclonus and there is enough joy to go round the world……if only they make the right choices.

Despite my struggles with Myoclonus, OCD et al, I choose to  do what I can with the little I have in making that one life just a little bit more bearable because I know that my core is and will always be strengthened by The One who alone can be relied upon. It is my core that remains unflinching in the face of all the bleakness, and whilst my body tries to adapt to these unpredictable bouts of incessant painful changes and weaknesses, my core remains strong in Christ alone and I can boldly tell you that regardless of what you are passing through ; Andrea, Shannon and the rest of us who are battling this, realize that I associate because I truly care. Putting aside my own troubles and pain and tremors, to share some humor and care to as many as I come across. I do not need good luck because I know that my end is pre-determined and there is only one outcome – no white flag is ever gonna hang from my door.

Remember that people do not care how much you know until they know how much you care. Make a choice to live for something worth dying for. Do not be a dead sea!

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!

 

Voting with your feet……

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Use your feet, don’t stop at the mouth

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.”  – Elie Wiesel

I have just washed down my clonazepam and yet I am still up, the warm eyes of my bedside radio faithfully tell me it is a few minutes past 3am and there is just something really serene about the night-time – it is the best time to actually have a conversation, and I know only One who is up at every moment and I am truly grateful for the alone time because usually it is a time of replenishment especially after struggling through the week on a gas tank that gets depleted faster each time. I really should have gotten round to this earlier on but I just needed to really try to step it down a notch. I take my last 300mg of gabapentin round about midnight and then wait, watch and pray for the sleep to really come. By the way, you know there is this thing about true victory – in the effort, lies victory. And for me, undeniably it has been a full week and just like the tastefully prepared Subway sandwich, there has been loads of sweet and sour and spicy but together it tastes great.  The fact remains that life is all about moments and so we have to choose those that will push us just that lil bit further down our path.

Going by the words of Aristotle “man is by nature a political animal” and therefore the way we live our lives to a very large extent determines what party you belong to – the crowd, the nonchalant and indifferent, the vociferous or the egregious,the nay sayers or the doers. We all each need to truly realise where we are before we can then aspire to be where we want to belong. However this is not a political pitch, I am a firm proponent of being a flag bearer of the truth and therefore in today’s world that makes you alone most times. Beautiful memories of days of activism still serve me and yet I still commit myself to bestir me from the lethargy that so warmly embraces most of us. Just choosing not to do anything and even when there is a need, we prefer to ask more questions (and usually end there) as against just doing something. I would love to appreciate my friend and brother – Uch for giving me the title for this piece and be assured that the word ‘vote’ certainly transcends ballot boxes anyway.

It is always more intriguing trying to express my journey through these words but I am assured that there are many who are presently sitting on a pile of lemons, battered and bruised by the impact of being constantly hit in the face with lemons and just out of ideas and it is really to you that I speak to because there again, you have to vote (and in this context, it simply means doing more than just talking) to either wallow in a putrid atmosphere of rotting lemons or get to work, making lemonades. I just responded to my cuz that the lemonade has become so normal to me now that I have chosen to spice it up with a little tequila……funny right, considering I do not imbibe alcohol. Thank God it is Saturday morning – it is a new day and every morning that I can behold the rays of the sun awakening in its splendour, I know that I can and will make it.  And like Dan Ruther, I would much rather wear out than rust out.

But what happens when you cannot help but acquiesce to the fact that your feet simply cannot go any further? That was the amusing event that occurred on Monday. It takes me about 390 seconds to the shopping mall and as usual, because I do have to really rest, I usually kinda try to make my outings count even though I get to do it alone but hey! we all have to vote and our feet need to take us from point A to B in order to make that vote count – this includes me with my trusty staff of authority that is already showing signs of strain and wear but I dunno about you, every accoutrement of mine says ‘I am still here for you’ and from experience, I have come to actually believe what they tell me in comparison to the deluge of unkept promises and insincere statements that I am inundated with almost daily. And so I decided to see if I could do just a lil bit of shopping as I was almost out of instant meals and fruits. Now the weird thing about this disorder is that no matter how much you would love to ignore it and just carry on for once like the average human being – before you know it, it eerily whispers its commands to my neurological system and the alarm bells go clanging away. The state of independence and emergency rule is declared – you cannot help it.

So there I was, after barely being able to cross the road, plunked down on a road bench wondering how I was going to get home. And I really cared less for the little groceries I picked up, I just needed to get home but how was the issue. The cab companies were not too forthcoming and so I prepared myself to wait for some miracle to take place because miracles do occur every moment. And then It hit me, I had scheduled a house call by my friend and brother and so immediately, with barely responsive fingers (thank God for bluetooth ear pieces), I called out and he rushed to my assistance – helping my quivering  mass into his car and home. Phew! that was really a close call. Anyway we got talking and at the end of the nice company, absolutely unexpected gift and him being there for me, I took away that phrase that until each of us begin to vote with our feet, we are pretty much consigned to a world where anything goes. A case of whichever goat cries the loudest is taken to be the hungriest. And here again, I am completely flummoxed….why do we spend more time making all these neighing noises and yet still standing where we are. One of the fundamental principles of life is that a real man puts his money where his mouth is and in this case, money represents action. We are constantly inundated with words from all sides but the real difference is the ones that actually get put into action.

Like I said, it has been a week – commenced the novel Redcord therapy (redcord.com) here in the UK and undeniably it is something new and worth a shot. Why curl yourself into a ball, throw a pity party and allow yourself be thumped into submission when you can simply get up and actually do something about your present circumstances. Vote with your feet, enough of the semantics and the speeches – it is time to do something and even if it has to be baby steps – get your feet moving. In a bid to fight insomnia, I have downloaded ‘Sleep Time by Azunmio’ which helps record my sleep cycle and tell me how I am faring and even though the stats are not very encouraging, at the very least I am doing something about something. Thanks Vas! I do understand how difficult is it make you understand how difficult it is to really get that sleep but I am thankful for the few hours I do get to notch because I am aware that there are a few who cannot even get an hour. So irrespective of how beaten down you may be, just take a second to realise that there is someone out there who could with a sincere expression of love, humanity, kindness and compassion because it is only in giving off ourselves that we can truly make room for something newer and different.

I recall the teenager who after loads of tests (as usual) was finally diagnosed with idiopathic hypersomnia, which is an entire reverse of insomnia but I applaud her resilient spirit because nobody can take that from you. And what an awesome experience it has been for me, choosing to place that resilience (it needs upping sometimes) in the Hands of the One who is sure to stand by you through the gloom of the valley of the shadow of death because there is really no hiding place from Him but you have got to vote with your heart and feet and then trust Him to do the rest. It is definitely no bed of roses but you know that you are never walking alone, and that feeling is priceless because no matter how much, a friend, brother, acquaintance pledges to be there for you – this is your journey and they have got yours so save yourself those heart- wrenching moments of despair when they just cannot fit you into their plans, remember it is their plans, not yours and there is only One whose plans for you are true and He will also be there walking you through them but you have to vote with your feet and heart, begin with a sincere conversation with Him and give Him room. I have done that and it sure keeps me going when all else fails.

I have learnt to continue giving for as long as I have got something to give and amazingly there is always something to give but you just cannot let the thought simmer forever in your heart, get those feet moving. Stand for something at the very least or like the crowd on the bandwagon, you will fall for anything. If you have truly experienced the pleasure of seeing that glow light up another’s face when you can share something positive in deeds then that alone is a dead ringer that you are more than just mere statistics. As each day affronts us with its myriad of opportunities, let us do less of words and more of action because you will be remembered not by the words you spoke but by the actions you took – and it begins with casting off that indifference and nonchalance and actually doing something. Thank you for the likes of gorgeous Ure, Funsh with his persistence even if he always has to say the last word, Estee for simply wanting to be different, solid Lola, amazing Shirls, Dee and HCM and a host of many who have been raised up for times such as these. I am giving back too and will continue to because life in itself is a test and you either choose to take it or be forced to take it. It is such a beautiful day indeed and yet again, I see hope even as the morning rays make their way into my room. Grab the opportunity and actually do something for a change – givers never lack and that is why I have chosen to be one. Anyway I really cannot afford to lack more than I already have but with each day, I know it is gonna be better than the last.

Remember what woes of miseries betide they who are simply existing when you can truly experience a life of purpose.  I cap my thoughts for now and see what catnaps i will get 😀

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!

 

Behind the Shroud…

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Seated comfortably in the cozy reception of the Chelsea Consulting Rooms, I resist the urge to make my way slowly but steadily to the park and just lay my weary body down. Had another nice session with my pain physiotherapist and with three appointments scheduled for today, it’s one down and two to go. What better way to spend the moments in between than to chronicle my thoughts about my continued battle with FMD, generalised or myoclonus dystonia – many names to this elusive foe that continues to elude the best of experts and yet cunningly ceaselessly pummels our bodies. Each day, gratefully received with thanksgiving and an undeterred view to conquering and triumphing regardless of the shortcomings of medical science.

Over the last week, I have encountered a crop of unique individuals who unknowingly have given me something new to hold onto whilst contemplating the old and the present. Boisterous Dee who has been a friend from outta the blues but from same origins, a triple feathered hat adorning her beautiful crown and an amazing personality – not battling alongside many of us but she still stands out. Roxy who has shown such feistiness in her own battle, determined not to give into the apprehensive future unknowingly created by many medical experts and a worthy ally in this fight. Pam who has doggedly continued in the paths of her parents, not focussing on her struggles with this foe but determining to change the world one person at a time. Debbie and Jamil, empathetic and yet cheering me on in this battle, the list goes on…….You may now understand how special this past week has been.

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein can’t have put my stance more aptly. Dealing within the last few days with a tumultuous aftermath of a wonderful barbecue, working past a severe bout of sciatica and intense aggravating pain, watching bemusingly as my fore finger insists on differentiating itself from the rest of my fingers…..the list goes on and on. This battle goes on, each day defining itself by the little steps of successes achieved despite the irritating restraints occasioned by a neurological system wanting to be independent, I refuse to be bullied into silence neither will I become a victim because “when I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and could say, ‘I used everything you gave me’.”- E. Bombeck

One thing stands clear even with my wonderful team of consultants, each adopting an approach that’s most comfortable with them, this is a personal battle and there can only be one victor……Me. Regardless of the diverse approaches, there is a limit to the extents to which we can unravel the mysteries of the human body and its complex systems. What lies behind the shroud concealing the answers to our numerous unanswered questions will definitely be unimaginable and whilst we yet struggle with our puny attempts to understand, time passes on and the question we should ask is how best can we make use of this inevitably scarce resource called time. Continue to be fazed and depressed when individuals like us can’t provide the answers we seek or channel our time and talent towards improving the life of just that one person at a time. My choice has been made, there will be no white flag across my door. I will stay in the trenches until I’m out of ammunition and even when I have run out, I choose to lift my eyes up and exploit the inexhaustible supplies available to each of us.

This is yet another clarion call to my friends and fellow warriors, as long as breath remains, there is yet work to be done. Remember that the best way to triumph over your weaknesses and frailties is to assist another with theirs and even when the attempt is rebuffed, be glad you made the effort because in the effort lies victory. The bills may be overwhelming, the pain a constant nuisance but acknowledge that there’s a reason for every season and whilst we may yet not comprehend the reason, acknowledge it is a season and plug in those talents – each of us complete with a unique set…….for what a tale of misery and woe if we choose to allow those talents to waste because it is better to wear out than to rust.

I have to dash (not literally) across for my next appointment but I will remain valiant because that is my choice. Nothing is going to brow beat me into forced submission, my voice will be heard not in tales of woes and misery (the world is sad enough) but in a tale of triumphant victory that despite it all, I conquered and triumphed. Many will come across my path as I will, across many and knowing fully well that in life, we meet to part and part to meet, I want to make those brief moments count. It has never been about the numbers and never will but for the very few that choose to stand alongside me, I raise my hat to you for together we will chart a path of hope, victory and legacies for generations unborn.

Remember, we were made to live and not exist.

פרידהעדשנפגששובחבריםיקרים

Adios!