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Within You, Without You

Tuesday, 21 October 2008 / Published in Blog thoughts / 3,317 views

Jagadbhandu das: Recently, after reading some of my writing about my experiences with my autistic daughter, a friend wondered how long we could continue to care for her under conditions of such extreme stress (which in his estimation as a healthcare professional were enough to kill our immune systems). My casual conversational reference to the Vedic conception of soul science caused him to sarcastically remark about my being in the “School of Karma” (along with a snide quip about my apparent solipsism). He also wondered if the reason we did not institutionalize our daughter was because of our potential consequential guilt after ‘sending her away.’
I thanked him for his thoughtful critical observations before I told him it’s more like finding inner serenity through harmonizing with inevitable external conflict than any thing in the School of Karma. No external blame for my circumstances. No quarrel with my environment. Nobody’s fault but mine, etc…. Some might call it tolerance or surrender. I call it being a soul. At last.

Please know that what I’ve tried to convey in words about our situation is really only the tip of the iceberg in terms of the full extent of our severity (and detail). Also, because of inherent subjectivity, words often fail to communicate accurately (especially written words) because the same word can have different meanings (possibly self-stigmatized) for all who read it. Every morning we awaken to a virtual apocalypse. A hurricane inside the house. Concerns of dignity and privacy also prohibit me from fully expressing the true extent of our actual dilemma without rephrasing in a fictional context. It’s not a question of how long we “can” live as we do. We must continue on forever (or as long as it takes). A sort of Zen determinism, if you will, intensely focused only in this moment. And then the next.

It’s readily appreciable and easily apparent that others who haven’t similar intrinsic disposition and subjective experience aren’t likely to share similar perceptions. Therefore, I do not consider that others should reason as I do. About anything. I do know that the continued lessons of the tough school in which am the current neophyte student, continues to make me go deeper and deeper. A better question might be, “How deep can you (I) go?” How deep is the ocean?

I wouldn’t hazard to guess what anyone might feel guilty about or not because I can’t walk in their shoes, but can only try and live my own life. Possibly I have failed to adequately express that there is no one but us who can “help” our daughter. “Sending her away” doesn’t occur. In any case, the clinical treatment of my daughter’s condition is non-existent. Besides, I find the institutional model for “regular” thought and behavior has failed more than just those persons who are severely autistic.

My friend (who is fond of Emerson) wondered if our daughter might benefit being read aloud to from the writings of other emergent autistic persons. I explained that she wouldn’t even be able to understand Emerson if I read him to her, what to speak of the writings of other autistic persons. Sometimes we think she only understands tonal modulations like a dog. That not only does she lack verbal communication, but she also might not understand it. However, it may prove useful to consider that a speech therapist she once had found that she expressed her needs quite well through her own unique system of nonverbal communication independent of conventional contrivances.

After reading about the severe daily struggles faced alone by my wife when I am forced to be away from home for long periods because of trying to earn an income with which to support our family, he wondered about whether my wife had any influence on our domestic duress. And also about what effect all of this was having on our younger “regular” teenaged daughter. I told him that my wife has plenty of influence in both my life and that of her children. But she doesn’t quite have my mercurial velocity of existential concentration. And my younger daughter has her own problems of developing respectful social constraints that had already begun to manifest before her sister was even known to be autistic. Unfortunately, many “regular” teens nowadays seem to suffer from the same disorder of extreme rudeness. As a child the first thing I learned from my old-fashioned father was to respect others. Sadly, contemporary pop “culture” seems to discourage this in youth (and adults). So everyone seems to think ill of everyone.

For a number of years we were somewhat involved with the directors of the Center for Autism and Related Disorders (CARD) at the University of Florida/Shands. They visited us in our home on more than one occasion. In their accredited estimation we were doing such a fine job with our daughter that we were put on their inactive list. When I mentioned to one of their directors that I was writing a book about my experiences with autism. He thought I could probably write two.

There is of course, a certain vicarious aspect to my writing about my experience with autism, being that I’m not autistic myself. Therefore what I can say about autism from a truly firsthand subjective viewpoint is necessarily limited (although living with autism has very nearly left me feeling as if I were myself autistic). Rather, what thoughts I attempt to literally compose in this regard are about what potentiality eventual beneficial effect severe harshness can have in beautifying the spirit of my unique specific individual consciousness. Never mind apparent manifest preference of ideological conception.

My friend likes Emerson. I like Camus. He really believed in latent human potentiality manifest under great duress. To me, The Plague is a beautiful book. Others find it depressing. What is day for some, is night for others. Darkness for some, is light for others.

I like Blake too. Especially what he said about his contemporary “Christianity.” You and I read the Bible, both day and night/whereas you read black, I see white (loose paraphrase). Or the as the Beatles said in Within You/Without You, “I was talking about the space between the lines.” And trying my best to not go completely insane in the meantime. From this moment, to the next.

One version attempting to describe our inspirational experience with autism (and severe hardship) is called “Lovelight,” because it’s about love. Love which can make humans become very nearly superhuman in their affectionate dedications and consequential self-sacrifice. It’s also about inspiration. To become truly inspired to dig deep in order to mine the silver lining of every dark cloud looming on the horizon of the subjective evolution of my unique individual consciousness. What more can anyone do?

Or as Plato once said, “Be kind. Know that everyone you meet fights a great battle.” With their true inner self. The jihad within.

2 Responses to “Within You, Without You”

  1. bhakta piyush says :

    Hare Krishna, Please accept my humble obesisances. All glories to Srila Prabhupada.
    I had read your article and later came across this information. I am not sure but it may help?

  2. jagabandhu dasa says :

    Hari! Hari! Please accept my humble obeisances. All Glory to Sri Guru and Gauranga Mahaprabhu! All Glory to Srila Prabhupada!

    Many thanks for your kind consideration!

    We’ve actually had her on specially formulated B vitamins for some time. It’s helps a little. We also tried the gluten-free, casein-free diet for years and it also only helped a little. Autism is known as spectrum disorder and so severity of affliction is manifest in a broad range amongst all those who suffer from it. The B vitamin therapy and dietary restrictions seem to work better with those who are less severely afflicted. Our daughter is at the most severe end of the spectrum with little hope of treatment by either alopathy or homeopathy. Conventional medicine would only fill her with heavy ant-psychotic drugs like respirdol (which can have potentially fatal side-effects of diabetes and liver cancer).

    The problem we presently face is two-fold. Autistic persons can suffer from self-injurious behavior (SIB) often combined with obsessive compulsive disorder (OCD). In her case this means that she has steadily picked away at her gums until she has fully exposed the roots (nerves) of her eye teeth. The physical pain from these exposed nerves have nearly destroyed her appetite and can make her howl with excruciating pain all day and all night. Last night I was up with her all night. She barely slept at all. Also there is an unhealthy symbiosis between the medical profession and the pharmaceutical conglameracy which makes it difficult to pursue even minimal usefulness in this regard.
    So we’re sort of on our own. Allwe can do is become stronger (and deeper) from within. By God’s Grace. And become evermore compassionate to her suffering until the self-indulgent false egotistical conception of our own “suffering” become completely obliterated by our real concern for the suffering of others.

    The second aspect of my problem is merely economic. The intensity of our situation has rapidly escalated so that both parents are necessary at home in order care for our daughter 24/7. Having regular employment has become nearly impossible. So we are left with the thorny dilemma of income earning (even though we already have full time engagement/employment in caring for our daughter).

    The only solution to this is to really assert myself according to my best innate capacity in order to finally become situated according to my true vocation/avocation. Same as it ever was.

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