I’m right here……

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invisible

Posted a video some weeks back, something completely out of character for me and I’m still dealing with the reactions. However, I’ve never heard this statement before and I told him same; “Oh yeah! I saw the video but I thought you were acting a drama!”. No, I’m not kidding you at all. In continuation, “it was when I saw the comments from other people that I went back and saw I had assumed wrongly!”. Honestly, that brings mixed feelings, do you laugh it off or take the time to explain? But the question is, when taking a walk on the beach, do you stop and ensure all your footprints are covered. My hilarious buddy, Uncle Donut inspired this post and maybe with his permission, I’ll include to his video. A truly amazing guy whose resilience also inspires me.

What’s going wrong with the world and its occupants? I’m right here! I can see you and I know you can see me, I can hear you and I know you know that too, I can also talk and just in case you’re assuming I can’t talk, we just exchanged pleasantries!!! I’ve had people say hi, return my smile and then stop Joiv and ask “why does he use a cane? Is he okay?” Hello! I’m 5’11”, 200lbs, a redhead with freckles and people say I dress like a Brit (a particular category I’d believe cos I’ve seen my fair share of Brits with saggy pants, comfy with puke all over his shirt and totally inebriated), speak fast and have a carribean twang in my talking. In summary, even if I try to hide, I’m pretty easy to find. So “hey! once again, I’m not Harry Potter, I don’t have a cloak of invisibility (and if it does exist, I probably might have some difficulty standing and trying to conceal myself while standing.)

The other day, I came across an elderly couple on my way to the pharmacy to pick up my medication and after saying hi to them, the lady asked the pharmacist, “why are you asking him if he’s taken these pills before?” Ummm! I’m right here” and if you think it might be rude asking me then just begin by asking me if I don’t mind you asking me a question. I don’t mind and I’d really prefer to do a 360° with the shopping cart in the mall or dance to the music coming through the mall speakers if I could so that I can also prove to myself that I’m real.

I really think it’s time to start testing myself in weird ways because why bother to send out or accept a friend request on social media if you don’t plan on having a conversation. Why bother spending seconds (incase you’re a fast reader with a 180 IQ) reading a post or an article and just leave without reacting or leaving a comment. I mean if there’s some super spy agency that requires those ‘skills and has very good health insurance coverage, please sign me up as fast as you can, I really would appreciate some financial rewards for being nonchalant.

Okay, let’s back up a little here – I just added “I want to be invisible and get paid for it” at the top of my list. I sure would like to eat a banana and wrap it back up with duct tape or prise open that can of pistachios and take a handful, oh I do love yogurts but since they’re not sealable, I’ll probably just put it back empty on the shelf…..walk right out the mall and drive home. I actually feel today’s grocery shopping should be on the house because if you’re polite enough not to see me then I guess I should return the complement. Why embark on a fact finding mission of looking for your car keys while you are driving? There really must be something I’m missing here.

Anyway, I think it’s time to actually become invisible and that also applies to you dystonia, “go stand in the naughty corner!” Are we really being polite or just becoming more nonchalant because I would really love to sit naked on the beaches of Tahiti, sipping on some carribean juice rather than being ‘not seen. If the price is right, I would love to supervise the pilot in the cockpit even though I know nothing about flying. Or better still, walk up to that horse and ask him to scratch my ears. What? We’ve both got ears, why should he always be the one who gets the scratching done? Lord! All the things I would qualify for by being just invisible however I’m not and so please don’t be offended if I’m unable to not be invisible.

Ever been to the dealership to have your oil changed and 30 minutes after you’ve handed over the keys, someone walks up to you and asks you what you are doing there? Oh no, there’s no reason why I should get offended, ‘I couldn’t find an apartment to live in so I’m currently residing in the dealership’ and while you are at it, ‘could you please get me a cup of coffee and some cheese croissants?’ It’s just outright amusing when the ostrich’s idea of hiding is to bury its head in the sand, the huge derriere will just blend in. So please when next you see me, remember that I’m perfectly capable of seeing, hearing and talking.

Nobody aspires to be a nonetity, that is not a career choice in any part of the world except the mall on Mars has job openings. I recall my first and only psych evaluation after being diagnosed, he sent me a copy of his report and I wrote him a letter attaching his report and politely explained to him that he would probably fare better as a zoo guide because the animals don’t talk but I can and yet nothing in his report related to all that I said to him. I guess it was the luck of the Irish that got to him, so an amicable parting and some extra quid in my pocket was really a good deal.

Now let me go get some duct tape for my eyelids tonight because desperate times call for desperate measures!

ללא שם: בואו לא נהיה עייף עדיין, עדיין יש קצת אושר שם בחוץ!

Adios!

The miracle of brokenness……

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Broken but not alone!

I have been, in the course of my journey through life, asked so many times; “what is a miracle?”. And my answer since April 1992 has really not changed! A miracle is an encounter with The Sovereign God that marks a transformation to one’s entire being producing an altered and improved state thereafter. An encounter that cannot be literally expressed sufficiently enough because more often than not, there is such a new and heightened relationship with the source of the miracle that words cannot adequately capture. All miracles have an outward manifestation, be it healing or just simply waking up in a new day. However what i have also learned is that the most important miracle is not the healing of broken bones or the provision of a new job but it is the healing of a broken spirit. Since 2013, when I published my first post, it has been my prayer that every post transcend just mere reading of words but actually filters through to the spirit where ultimately transformation takes place. It is usually in the midst of brokenness that the significance of a miracle is most felt.

Has my life been devoid of miracles? Definitely not, birth in itself is a miracle and no matter how much you strive to attempt and define the source of the miracle, there is just One Source that evokes the miracles that matter. Do miracles always have that earth shattering result that has become so widely associated with being a Christian  as publicised in the media? Definitely not! My own experiences have shown me that the miracles that occur with no fanfare, no thunder rumbling or multiple lightening strikes on the same spot, are those that tend to affect you more significantly. It has almost become conventionally accepted that more potential is attributed to the miracles that come with fanfare and blowing of trumpets, which I think is somewhat like missing the mark. Nonetheless when you can percieve in the stillness of the moment within your spirit the beauty of the miracles that occur every day, then the profoundness of that miracle and its associated benefits are truly yours to enjoy.

In the course of the last two weeks, I have opened up my heart to more people especially those living with some neurological disorder as I am and those who, even though are not ailing, but by virtue of being caregivers to family and friends are also part of this group. Within this group, I have seen such resilience and defiance to being constrained and made a prisoner of Parkinson’s or Dystonia, that with every encounter I consider myself truly blessed. It is in the chats and conversations with these amazing group of people that I whole-heartedly attest that I am in an arena filled with champions. Champions defined not by the physical parameters of bulging biceps or stunning physiques but defined by their refusal to give in to these disorders and their astounding sincerity of actions that can only be fuelled by true love. In all honesty, this caption was born from the utterances of an incredibly amazing man whose craving for donuts and his humorous videos make him extra special. With his permission, I want to share his words;

If this makes any sense, there’s been an unimaginable benefit to having this disease. What are you talking about Uncle Donut? Well, I’m glad you asked, so hear it goes. If I didn’t have this disease, I would have never been exposed to a world where people who have such compassion and kindness, struggle with the simplest things. Being on the outside looking in, I would have never known that the person beside me in the store, may have just been through a Dystonia storm, or my neighbor down the street may have had Yopd (Young onset Parkinson’s Disease) and smiled while taking walks with his family. Physically I was strong and confident, but I have learned something about that. True strength is fighting everyday to keep going, even when your body says no. True strength is when you have a dystonic storm, but you get up to make cookies with your kiddos. There’s so many stories I could tell you, that I read about. I’m overwhelmed by a world of compassion where you are not judged, mocked, or belittled because of your disabilities. A world that welcomes you with open arms, and its ok to have bad days and not be criticized. I would have never experienced this, had it not been for PD. My eyes were truly opened, and I’m thankful to be part of this world. So please keep fighting, people don’t realize how beautiful and incredible you are. You may not feel this way some days, but I’m here to tell you, you are a bright light in a dark room. Much love guys.” – Keith McKoy

Reading this just allowed me re-appreciate the uniqueness of our individuality, expressed through the choices we make everyday. Even when we are broken, there is a miracle there if you can only just change your perspective and focus on the world around you. It is a miracle that defies the weakness, fragility and limitations of our human body. It is a miracle that forges a more resilient spirit, acknowledges that we were not created to be alone and taps into a Core that we never realised existed. It is a miracle that produces the strength to love someone else regardless of location, language, skin texture, size etc. It is in this brokenness that we can truly love in deed and not just words, and that is itself is a miracle. As long as we stand side by side, through the billowing and raging of the storms, through the darkness that seems unending, though the unpredictable and severe dystonic episodes, there is a miracle occurring through it all. Today, once again, I choose to give and when I have nothing more to give, I will stand/sit in silence with you because every life is special and nobody deserves to be alone in the storms of life.

עד שנפגשנו שוב, אולי התענוגות שלו להיות העונג שלך לעשות

Adios!