Walk With Me….

I receive posts and have conversations with so many beautiful people as they attempt to chronicle their life journeys – ups and downs etc and I am truly honored that whilst we all together battle the horrendous debilitating condition known as dystonia, it is not a time for dirges and eulogies cos we are still alive and in it together. I am also ecstatic considering that this month will (has/is to be) officially recognised as Dystonia Awareness Month (DAM is so much better than Damn), however I apologize yet again for the break from writing. It has indeed been a whirlwind of activities – playing hosts and with a wry smile, thankful that hospitality is also something that God demands of us. There will always be situations where you go in as daffodils and almost emerge as dried up floral specimen in a history book somewhere, however yet again the choice is yours because the strength, grace and panache is available as and when due. Quite a few notable transitions have taken place, my deep condolences to those left behind and I always advocate that whilst the sorrow and loss will inevitably be felt, we can choose to make them happy that we encountered them and possibly took something positive from the encounters.

I still am hard pressed regularly and put through the paces regarding the subject of myoclonus dystonia and the various members of the huge Dystonia family. For one, I would say, take a moment now or after you are done and look it up online because dystonia is not a disease like the ravaging ebola virus or any other ‘really bad’ disease that has an open and shut chapter of visible symptoms manifested by every one infected. I would say that just like I learned as a child, discernment is an awesome gift and the success at being a triage champion is not to be fazed by the amount of blood gushing from wounds/body orifices but the ability to stay calm and see through the almost quiet complaints of internal pains because more often than not – what hurts and damages the most is rarely always physically seen by everyone until its too late. Love hurts but forgives and it is long suffering, yet the heart hidden away behind the bars of the rib cage still beats away, hoping that time does its work (time is everything? Uhmmm! I would opine that God is everything!) The greatest thing to have has always been, will always be and is love – it does provide amelioration not amortization of wrongs and just as God says, you can never go wrong with His love. Choose to love, every time – its limits has never been determined by us anyway.

As a child and till date, one of the most fascinating skills to me has always been sculpturing and even though construction will always be a part of my life and joys (the investment part, professionally speaking), watching a stone mason utilize the mallet and the chisel on rock, concrete, granite et al always gives me some shudder as I watch the strength behind each blow and watch the sparks fly away with every little piece detaching…..I used to appreciate how blessed the object of construction or destruction or sculpture as the case may be was because it was inanimate and lacked feeling. Ironically, some events no matter how long you watch, rehearse for (if possible) can ever prepare you for the real deal. And how much truth lies in the words of J.K Rowling (Dumbledore to Potter) : ‘Numbing the pain for a while will make it feel worse when you finally feel it’ (now there goes out the window my own opinion of some current management procedures). Dystonia is like having a rambunctious ill behaved kid running wild inside you armed with a chisel whizard/hand point (and regardless of how soft the blow is or what end is used, you still must deal with the pain) and the blows are unceasing, what varies is the intensity. Some days, a blow knocks me to my knees and even in the foetal position, little or no comfort is derived. Every blow, tap sends painful reverberations through me, and it does not help that my brain also compounds the event by automatically doing what it does, sending out signals in response. Extremities are always the worst hit – cramped painful fingers, awkwardly twisted painful ankles, cervical contortions etc

Nobody loves living beside the train tracks because every time a train passes, that motion does something annoying to you – transference of kinetic energy. Now imagine living just around (beside, above, beneath) the Victoria/Euston Park station in Central London and that does not even suffice to describe the tremors brought about by the chemical imbalance in my brain. regardless of how weary I get, the tremors go on – aggravatingly attempting to counter combat the little runt with the chisel. And the usual question of scaling when it comes to pain sometimes ticks you off because you wonder why must 10 be the limit when there are greater numbers after that. On the bad days, even my muscles are weary and yet they still must react and so that in itself creates sore points in my joints, so bad that it feels like some tendons just want to snap as against continuing the compression and extension. A simple handshake feels like I have got 4 cute blue 10 lb weights strapped around my arm (and yes they look cute but they don’t feel cute) so I have opted for hugs when I can. The hugs are a better option although I still have those same weights pulling in the opposite direction of how and where my neck wants to stay, plus I have to deal with not toppling and knocking the other person down. I miss being able to do a double take and I am grateful that at best I have still got 30 degrees to 50 degrees rotation of my neck, and so when my head is tilted most times, I wish you could understand that I am not rehearsing a role for a circus performance.

Oh how I used to love bounding up the stairs like you sometimes do when you are in a hurry, instead try doing it with the diving shoes worn by Cuba Gooding Jnr in ‘Men of Honor’ during his reinstatement exam and then you would not have to look at me crazy next time when I tell you I usually do not do stairs or when I am panting after the few steps up the platform just because I have weighed the distance to the ramp and the steps are less than five. Walk with me to the ramp instead, and understand that my palm hurts frequently even with my ergonomic staff because every step is like walking through a mud slogged patch of swamp, not wading, walking. And yet I am thankful that even though I hurt every step, some days my legs take a poll and call a strike action and so I am thankful for the convenience of benches. I want to get up after the rest but there are weights anchoring my lumbar vertebrae to the chair and so forgive the wince and allow me catch my breath cos I sure cannot lay on that chair. It just does not support the specialized posture that my orthodontic bed, neck brace and pillow give me which is just one way – face up because laying on my side gives the hammer guy more time to try out music notes on my spine. When next you are wringing that dish towel dry, imagine what that would feel like if twas your spine in your hands – I do not complain and now that I am so used to synchronized medication (it could be a sport some day), it really does not help when I am so into writing that I would love to finish this piece because the medication sometimes brings relief and sometimes its just an opportunity to get more fluids into my body. Either way, I choose to abide by what I carry around and wait for another barrage of cursive prescription outlining another bouquet of medication because remember life is all about dynamism. I shake my fists in contempt at the pharmaceutical giants as they chuckle amongst themselves but I know that I can also chuckle too because it is all about who gets the last laugh. That flag flies full mast at my door, because I have not and will not succumb to dystonia, myoclonus dystonia (MD?)…..what a joke!

You think insomnia is just a fancy word or at most a figment of someone’s imagination? Try shutting your eyes in sleep in futility because your brain like mine is at full steam, each cycle processing every noise in the quiet and so I opt for the TV screen and/or the classical music from my bedside digital radio to keep my brain a  mite focused on some distraction with better options as I wait for the night time pills to kick in and even when they don’t, I am thankful for the extra time I have to do something. There is no point in wasting it because remember, God is everything and even He does not and has never worked in a manner that suits our comprehension. I choose to flip the lemons into lemonade because someone else out there could do with a drink because I know what it feels like to have a perpetually patched palate. Water comprises 70% of our body and note that we can survive longer on water than food as most people think. So I am thankful for the high metabolic rate brought about by md because I now drink more liters of water, and guess what – I have chosen to make it all fancy,  its a dash of lemon in sparkling water, my pouch of multi-coloured, varying sized capsules that comprise the accoutrement to my faith in my job at fighting md.

I have learned that we are who we are by choice, and the circumstances of our lives only shape us. Remarkably, what a responsibility that God bestows on us to always choose so make that choice wisely today. Do not celebrate dystonia because it sucks, really sucks but celebrate the fact that I and many others have chosen to and are smiling it its face and someday we all will appreciate that life as a journey is best made with wisdom. It is not just the acquisition of knowledge but the application as and when due that can be called wisdom. Now you are aware, be a positive in somebody else’s life and if perchance you have scornfully cast away a friend, relative or even a stranger because of your appalling lack of knowledge, love and faith….seize this moment because love is a decision and do not grow weary in well doing because there is a harvest accruing and God is watching over us all. He gave it all up so that we can have and give of what we have received.

Remember “I cannot change the direction of the wind, but I can adjust my sails to always reach my destination” – Jimmy Dean

עד שנפגש שוב בזמן שלו, לא דגל לבן הוא אי פעם הולך לתלות מהמשקוף שלי

Adios!