“Give a man a fish and you satisfy the hunger pangs of his stomach for but a day. Teach him to fish and you assuage his fears of being hungry” – Maimonides. I grew up with dogs, ever since I got Snoopy as a birthday gift; with his floppy ears and wheels attached to his paws, faithfully following me everywhere. Since then I’ve never looked back, that the dog is man’s best friend is still a fact in contention but not for me, because life has shown me that you find the rarest of gems in the most unlikely places…..if only you can recognize it when you hold it. As a parent, I believe that owning pets was my parents’ way of instilling responsibility in us and I am passing that lesson on to the next generation. Ofcourse not all of my biological siblings share my passion for dogs, however I’m talking about me. One item on my to-do list is becoming a canine consultant, owning a farm where I can breed dogs, socialize them and also be a refuge for strays….that box is half-checked because dystonia swooped in and like the carefully arranged dominos, all my dreams started unraveling while I helplessly watched.

One of the very first erroneous lessons I learnt was that if you wanted a male dog to become bigger, then you took a trip to the vet and tearfully watch your dog being emasculated. Nursing the dog back to health was a responsibility borne out of love and compassion. Despite the emasculation, I cannot recall having a dog with such a growth spurt that it learned credence to that lesson. The dogs could do everything but when it came to reproducing its kind, that was a ledge it could never ever get to and so I’m forced to think that it was just a way of instilling birth control. Immediately I became independent, I waded into dog breeding and the subject of emasculation was an anathema. Yet again, life happened and I had to go through the painful process of being stripped bare so I could learn that no matter how analytical and logical I want to be, there is a limit to what I can do. I learned that trust and faith were more than just words but they embodied a concept that we barely grasp. It is always in the dark nights, the fiery furnace, the valley of desolation, the house of mourning that much wisdom is learned. It is in those times that you realize how little you know of life and its seasons because some lessons just have to be acquired through sheer persistence.

As a kid, barely holding my emotions in check, I remember those visits to the vet. Those memories are so vivid that even if the city was rebuilt, I am certain that I can still locate where the vet clinic was located. Today, I understand that life is like a pair of scales, and each day, we must utilize our abilities and limitations, carefully applying them in the right proportions to get the scales balanced. It’s about learning how to prioritize, emotions and sentiment in check, because until you attain the right measures, you just might spend endless hours fluttering from one pan to the other. And since time is always constant in its passage and many of us unfortunately are yet to understand the word ‘balance’, how then can you apply sugnificant and needed actions? Actions based on a preconceived and largely wrong understanding & foundation will never get you anywhere. And so sometimes, just when you think that you’re on a roll: all stations manned, all hatches properly secured, retirement plans drawn up, that’s when the storm hits you and shakes your very foundations loose. It is then the realization dawns that you are neither The Architect or the Landowner, but just an actor on the stage called life.

Living with dystonia has tipped my scales. Now I find beauty in the stillness of the dawning day, I appreciate the opportunity to help another in need even when I am barely able to support myself. I understand that it might seem alright to bask in the bliss of ignorance but in reality, ignorance has no bliss. It is an empty gourd that must be filled and if you choose to dance around with your empty gourd, convinced that when the drought hits, there will be something in your gourd to quench your thirst, then what a significant display of folly awaits you. The emperor with no clothes on! Even though your meagre wealth has gathered a train of sycophants, the harsh truth is that proudly strutting in your nudity is what is amusing the crowd around you. And someday when your barns are empty and your cellars dry, those sycophants will flutter off to the next ‘big’ thing, leaving you to come to terms with reality.

I know what it is to have and not to have, I know what it is to have people tracking you just to gain your attention and lay out their woes, desperate for some token from your money belt. I also know what it is to be ridiculed because of lack, to be derided because of one’s disabilities, to be scorned because I am different. I know what it is to shed tears of frustration because you know that you cannot get on or off the bus all by yourself. To discard ego and solicit for the attention of a caregiver, to swallow the bitter bile of pride and accept a much needed meal from a stranger. I know what it is to watch with teary eyes as a friend goes fund raising from strangers and people she’d never have spoken to just to ensure I can keep my next medical appointment. I know what it is to realize that the trust set aside for tuition for my daughter is in the negative, when I have to rest after taking a shower so that I can recover just a bit in order to get dressed. I know what it is to listen to the unanswered ringtones and voicemail on a friend’s phone because it is assumed that I am calling to ask for financial aid.

Dystonia emasculates; forcefully taking from you those things you taught were part of your birthright. Things like being a man: providing for your family, doing whatever it takes to cater for your loved ones. Emasculation is not circumcision! They are both processes occurring around the same area but that is all they have in common. The society’s definition of a man can batter the senses as it struggles to readjust your roles as a man living with dystonia. Rather than attempting to corral the chaos, choose rather to dwell on the little details that make life beautiful. The ticking of the clock, the slight scent of the evening breeze, the scurrying of the chipmunk…they might be too insignificant to catch your attention amidst your busy life but those things assure me that there is beauty in the ashes, gold in the blackened hearth, hope and inspiration from my life.

My ability to reproduce or not isn’t what defines me as a man, neither is it in the color and number of my credit cards, it is not in my inability to do a regular 9-5 job or the constant weakness that plagues me. My abilities and inabilities don’t define me, it is what I’m being used for by God that defines who I am. My ability to embrace my caregivers whilst answering the barrage of questions my daughter has as she grows up. My fatherhood is not measured by how long I can stay in the suite that houses my business (waiting for that big break to come), rather it is in the little fun activities I can still painfully participate in with loved ones. It isn’t measured in the dismay that the elevator is not functioning and my office is upstairs, but rather in the silent company as I prepare myself for that one torturous attempt climbing the stairs. It is not measured by the fact that I am barely able to wear my shoes but rather in my daughter’s excitement as she helps me put on my shoes. It is not measured by my inability to play a round of basketball or soccer with her but rather in the slow walk together to the park and my coaching from the bench beneath the trees. I have received numerous ‘recommendations and suggestions’ from friends but they are unable to grasp the everyday challenges I face; that even on my bed, I have to be careful in laying down so as not to set off a dystonic bout.

I am a medical enigma because I am not fazed by what the limitations of dystonia are, I set a goal outside of my comfort zone and even when I am being told, “you should sit this one out” I choose to press on because it’s just one shot I have and so I am committed to making it my best shot in the present circumstances. Yes, there will be the inevitable price to pay as my body painfully tries to re-establish an already skewed equilibrium point, but I gave it my best shot. Like the night owl, I sit quietly and watch, with limited movement in my neck not so much as to gather wisdom but to carefully apply my strength when it’s mustered because I know that regardless of the uniqueness of my situation, I must attain that balance. I do not have all day to spend because my efficiency is indirectly proportional to my time. It is not wisdom trying to redefine laziness, it is laziness trying to appear wise when this is my own race to run.

With every need that arises, a balance has to be attained but in order not to embark on some frivolous wild geese chase, I must first apply wisdom.  Your genealogy might stipulate that you should be tall, intelligent and athletic however your circumstances dictate something else. To grasp the definition of my boundaries, I must first of all acknowledge that there will always be boundaries but what I do within the parameters of my boundaries is a function of the choices I make. To either shine bright like a diamond and amaze or glow dimly like the coal embers and give off the much needed warmth, that is a choice to be made. And even when ego wants to reassert its place, I am careful to remember that ego is like the bliss of ignorance. It is available but not necessary for this season and even as I struggle with the mild irritations that occur as a result of my impaired boundaries, I must choose wisely.

What miseries lie ahead for the one who embarks on a journey without first learning from the experiences of others who have plied a similar path? For many have developed an ardent distaste for courage and are eager to put the blame for their limitations on every other thing including life and its inherent mysteries. Skipping around from stone to stone in the shallow stream is an obvious display of enthusiasm and excitement but it will serve me better to curb that outward display and instead use it in celebrating those who have greatly sacrificed their pleasures for my sake. Nonetheless whilst we struggle with our imperfections, let’s strive to inspire others by making every of our shots count. Even as we take the center stage, our caregivers are an irreplaceable aspect of our journey and without their selfless sacrifice, our journeys would have been choked to an untimely end.

Remember “no one can go back and make a brand new start, however anyone can start from now and make a brand new ending” – Anon E. Moss

עד ניפגש שוב, תן את היופי של ארשת שלו לזרוח עלינו

Adios!