Some personal thoughts (and its connection with my movement disorder movimiento)


Far from establishing any theory or similar through any of the next reflections, no more than personal points of view of mine, I believe it’s really interesting to know somehow those things that flow through the mind a person with dystonia (or any similar disorder) regarding  some important matters. You will agree or not with some of these thoughts. Others could be surely discussed for long in a deeper way.  It doesn’t really matter. The interesting thing is to consider if any of these inputs can be really useful for some people’s  philosophy of  life, and to redefine positively some of their ‘strategies’ in front of the challenge they face, and I do face, every single day.


Life: In a practical way, the less you think about it, the better. So there exist philosophers and philosophy (sometimes very interesting; others just wasting time). My perception of life cannot reach beyond the knowledge of human beings, those who explain the miracle of life, although many of them do not consider life the best business. Anyway, as the only demonstrable miracle to my eyes, life deserves the greatest respect from those who are lucky to enjoy it somehow. In many cases life becomes difficult to get managed, even since childhood. Many others have so serious difficulties to deal with it that it is fair they even don’t respect life as an option.


However, even when dealing with very delicate circumstances as ours, I strongly believe life must be lived if only to enjoy those specials moments you are invited to attend with passion. Please notice those moments were just planned for you as a load of load of personal and nontransferable sensations, the only way to feel them properly. Places and rest of people must be exactly as important as they deserve, and nothing else. Your life is only yours. 


Death: Kind of a present, everything wouldn’t make sense anymore. Every single thing could be postponed, and then life would lose its own dynamism. Death itself means the basic sense of life: doing things, and more things. Stopping to think and think… is not doing things anymore, but dying somehow. The present, my present consists of a period of time from now until a week later, and my target for the short term must be to carry out every duty and wish the best way. Over and above this, there exists an expiring date that we don’t even know, and there its grandeur is. Growing old must imply your own personal satisfaction when looking back with authentic dignity. If you have lived with a movement disorder, and you have been able to cope with it, you should feel really proud of yourself.


Dying means to put the finishing touches to the painting of you and resting, in the end, having lived (or not) as a worthy person. Fear of death has much more to do with the loss of many known things and persons, and less with the uncertainty of the unknown. These last moments bring to scene our final selfishness exhibition, although we don’t need to apologize this time.


The disease: I usually prefer to believe illnesses doesn’t really exists but as kind of an ‘agreement’ that doctors decided to invent. The idea means each one copes with his/her physical and mental circumstances, and somebody decides to face that ‘medical profile’ (they call it this way) to ideal healthy patterns, far from any reality. You must think you are the way you are, and the rest is conventionalism. Anyway, the key is the way you decide to face your ‘abnormality’: a) as something to be fixed whatever the cost, or b) as a situation to be accepted in your life process. And then I strongly believe the second one is the healthiest, at least psychologically. I hope my model can help other people, after 20 years without any treatment and having understood the self-acceptance (in a very high %) as my best way to cope with it.


It’s great that scientific and technological advances help us to alleviate many of our symptoms, specially if thanks to this, we are also able to accept and love ourselves a bit more. Probably the more you love yourself, the most you are able to love others. It’s easy to understand that when you feel better everybody notices.  


Love: I only understand this feeling when talking about personal devotion, depending always on each one’s possibilities, but based on measurable facts. On the other hand, I strongly believe in everything you do putting in a lot of personal effort in order to benefit the other/others. I don’t believe in that kind of love you can measure in money, in details to order, or in remote desires in the shape of a dream. But I do believe in that kind of love you can ‘weigh’ in time, in dedication, in plans of one’s own to make happier the other. But not in that kind of complicity which turns into dying plans as soon as one of the mates/lovers notices what feeling lonely means. I believe in that kind of love you make decisions in name of two, even more, and you make feel important the other/others. And you work for it within your means, whatever they are. I believe in that love which makes you devote yourself to it, even if you haven’t been able to do as much as you would have wanted to.


Physical limitations, as others, may make your capacity for love seem diminished somehow to other people’s eyes. It doesn’t matter. Only you really know what you do, the person you do the things for, and the way you carry out. Apart from it you even know the ‘weight’ in ounces, in miles or minutes of your effort.


Commitments: Delicate matter to deal with, I would define this, without any exception, as the prelude to failure. Promises, verbal agreements, any kind of commitment, contracts… In fact, too many things to be considered with an expiring date most of the cases. What would be the honest thing to be done under my point of view? Very simple: doing or avoiding doing, depending on the situation. The commitment with any single person should consider the premise 1+1=1+1 as a normal rule, and =2 in those cases, matters or plans that need the participation of both sides; the most genuine example: sons. Other examples you can imagine are leading any efforts to failure unless one of the persons have a special interest and then works for the whole team, which is also kind of a failure.


When suffering a movement disorder it seems much healthier to consider very honestly one’s potential and then asking for any help that you need without blushing. Maybe it is not easy at all but, believe me, once you understand and accept this situation you will be able to settle successfully the basis of the only valid and undisputable commitment you must consider with yourself: trying as hard as you can. No doubt it may be the only exception to the prelude to failure or deception that most commitments entail.



Responsibility: Depending on several circumstances and the personal/social environment, I consider this matter a very special value. Much more than respect or duties, it probably includes them and beyond. Feeling the responsibility for your people, with environment, with those important thing and/or beings, etc., mean standing close (just as close as necessary) to the scenery of the events, and then deciding the relevant actions. No less. This concrete point is not easy to be established, and the normal thing is trending to extreme stands: the distrustful vs the careless, the busybody vs the uncommitted, the unsecure vs the kamikaze, etc. Extremes we are usually sensitive to (we watch them from a distant perspective) when we cannot choose owing to our physical and psychological limitations.


Maybe this is the key, meeting that precise position that allows us to act as honestly as possible when facing those worrying things of ours. In fact, I only understand the most responsibility when thinking of other around me. Maybe, somehow, kind of a big mistake.    


Pain: When you get used to it, and your suffering threshold gets higher and higher with time, you only feel sensitive to twice sorts of people: type A: those who face the slightest pain and are not able to stop and think for a while, and then compare themselves with you, your difficulties and your real trouble; and type B: those who unfortunately are even worse than you. Pain is just the face of a symptom that can be treated (with medicines, therapies…) although you can get used to it up to a point. Type A fellows, mostly whining, will never ever understand those ones who belong to type B. Perhaps we should forgive them. They think a person can never get used to pain or, at least, this one shouldn’t. It is logical they think this way, specially those ones who seem neither feeling nor suffering. I think the responsibility of many sick people as we are must always consider people belonging to type B.


There are (we are) lots of people who, being sick but somehow capable, must play the important role of understanding: maybe the only human tool able to alleviate a kind of pain which shows itself as fears, insecurity, embarrassment, weariness, surrender, etc. It is the pain of soul, and I guess this one doesn’t distinguish between type A or B people. In fact not many people seem to be ready to face it.


God: Among the many different ways to call him, I prefer the word ‘Inertia’, with capital “I”, because I just believe and recognize God both this ways. And I recognize and found him through my acts, my willpower, my feeling like doing things, and that bonus of energy I exactly don’t know where it comes from towards me. When I was a child I thought that God had eyes as mine, and also that he watched me from the corners in the ceiling. And I was sure he was taking care of me at all times.


Having grown some years, I just believe in kind of an entity (non personal at all) that, however, is able to convert  the potential energy that I have (leaving to rest) into movement, facts and action, the extreme tiredness into strength to keep on working, or the slackness into true passion and responsibility for some of my loved ones. The rest usually comes by itself. Maybe this is also the reason I watch God as a synonym for Inertia.       



Nature: No doubt, the other way I personally met God. Nature when there is a beautiful landscape, but nature when there comes a human being. I usually like to lean on the sensations that nature transmits as the main basis of many emotions in my life. Very intimate emotions belonging exclusively to you, and maybe you must perceive in those moments when thoughts have no place. These people able to reach the state of meditation say this one is produced exactly in the silence period between a couple of thoughts.


Taking these things into account and being the sick of dystonia that I am, I must say I feel really good when my thoughts start to fly freely and then I met something similar to those meditations: I just ride my bike by the countryside watching the beauty in any single place of the landscape around and, simply, breathing the cold air beating against my face. Just at that moment I feel I am a piece of the nature that I love, even though nature itself hasn’t given a lot of health to me, but the possibility to understand me myself, exactly the way I am, welcome inside of it.    





Sex and sexuality: Instead of analyzing a matter with hundreds of books written about, it seems much more important an approach from the movement disorders’ meaning, far from the physical point of view, personally the one I am less interested in. I prefer to consider more specially the meaning of attraction, and the capability of attracting and feeling attracted by others, because nature has provided us with much more than genitals and body to attract others. People’s sensibility for so very lovely values as generosity, intelligence, kindness, willpower, etc. means enough arguments for a person to promote attraction, the magnetism which produces the natural means of our sexuality that must never been cut off by any physical disorder.


Fortunately, most of people are something else than walking genitals and so we can live our sexuality, as a general rule, much more rationally than animals. Well, this could be even debatable. That’s probably the reason that I am more interested in attraction and even seduction.             


Time: It is commonly said you spend your time better worse, even suffer, when time runs slowly. But this sensation, almost real very often, doesn’t make the songs shorter (or longer) than they are. Maybe this the reason why I usually cling to music when I am feeling a bit depressed. Well, I admit I usually cling to music whatever the circumstances are. Some specialists call it musical therapy and it is really useful when dealing with those things that seem hidden somewhere, those magic places where passage of time has no importance at all. That’s at least the way I live this.


Anyway, time is the currency that makes us equal when facing the expiring date that death shows in its label. Death as kind of a mystery that should drive us to do things for our own benefit, but specially for other people’s, motivated by that divine Inertia and the responsibility of loving others, and also for the aim of living far from any kind of isolation and immobility that would make time have no meaning.