So Phil gets home from school at 2:40. I ask him how his day was, and he gives a few details. He has to go to the bathroom, so we take off his hat and gloves, remove his tray, unbuckle his vest and carefully remove his coat. We roll into his room where I unbuckle his lap belt, and slide an arm under his knees, and the other behind his shoulder with my hand under his far arm, making sure his head is positioned in the crook of my arm, and my hand is not bumping up against his g-tube. I then adjust my stance so my back won’t hate me, and hoist his 70-pound frame out of the chair and onto the bed.
We chat about this and that while I roll him onto his side and slide half of his pants off. I reposition his hands and arms and roll him back toward me so I can slide off the other side. He winces, but he knows the routine. Cradle carry him over to the commode and again, watch the back while I swing him into position and set him gently on the seat. He divulges more of his day and finishes his business, while I stretch my back on his bed. I go back and pick him back up off the commode, and lay him back on the bed, and roll him away from me. We pull up half his drawers, roll him towards me and wrestle up the other side, and then I roll him onto his back, and we are both winded. So this is a good time to chat.
“This would be so much easier if I could walk!” he exclaims, in a surprisingly casual and objective tone.
“You got that right, pal,” I reply as I smooth his hair back on his head. “But I don’t mind. But this is just how we roll!”
He smiles and was quiet for a moment, and then out of nowhere asks me, “Does this mean I have to die to walk again?”
I would like to say I was thunderstruck – but that’s way too loud and far too understated. No one heard a thing as my heart elevator took a plunge all the way to the basement.
Up to this point, I suppose I have been pretty good at coming up with quick responses, clever diversions, true-but-vague and abbreviated answers. But they didn’t come this time. The question was too spontaneous, and asked in such a tone as to unnerve me to my core. Matter-of-fact. Not whiney, not emotional. Objective. Rational. I could not find anything in my arsenal of words to formulate into anything that even remotely resembled an answer that measured up to the question. A fairy tale answer about a hope for a cure would have been insulting. A flat out “Yes” would have been cruel, because despite the objectivity of it all, the inquirer is still just a 12-year-old boy who just got done telling me about the girl in school he has a crush on.
So what Phil got from me was, in fact, not an answer to his question at all. What he got was a declaration, drafted from a place of rawness and nakedness…a place of extreme vulnerability. “Phil, I’m not sure how any of this is supposed to go. I just don’t know. We’ve just got to figure this out together I guess.”
“Is there anything that can help me to stay stronger? Like that guy in Texas?” he asked, referring to the Vecctor treatments we have looked at.
“I don’t know, buddy…couldn’t hurt, I suppose. But that’s one reason we do your physical and occupational therapy. We want to keep everything moving as much as we can since you can’t move on your own.”
I look into his eyes, and I can see questions there that he can’t even ask. And I want him to know that this is okay. It’s okay that he takes up a ton of time. It’s okay that I have to tend to him like a baby. I don’t mind. Yes, it’s lopped off a big portion of what I thought my life should be – but in exchange for what? In exchange for knowing him, loving him, caring for him, and learning a whole lot about life in the process. So what if I never see Italy? When it’s all said and done, I will have spent years witnessing a human spirit whom I love overcome a disease process – now THAT is something for the record book. This is an experience that not just everybody has. No – nobody asks for it, and nobody really wants it. But when it’s what you’ve got – at some point you have to realize that it has a rare and valuable element, and is to be treasured.
But how do you get to that place? Because I was not there. Not hardly. While the rest of the day passed in the ebb and flow of dinner and dishes and bedtime, my heart was tossed overboard in the maelstrom of my mind. I cried while Mark held me through the night, hoping that the light of day would bring a new perspective. But it did not.
What resulted was the following journal – written by me, TO ME, and for me. A literary volcano, which emanates from the depths of what is uniquely me.
So why publish this? I had to ask myself this, because while I can sanitize anything I write to appeal to a broader audience, that is not why I write. I write for me – for the sake of clarity of thought and purpose. Turns out, many people think and feel the same way, but perhaps lack the ability to get it into writing. We don’t want to share the ugly stuff – the inside scene that might make people think less of us – and so we suffer that in silence. But perhaps – just maybe, someone will read this and find their OWN answers within my tormented ramble.
I am choosing to share this, except for a few spelling and grammatical errors, unedited. It’s bound to offend, upset, and disgruntle folks – but that is not my intention. Please take nothing personally – as the person who I am addressing is ME. There were no faces before me – only the bulk of humanity. My theology is my own – I have no scores to settle, and no cause to soapbox for here. I simply needed to go back to the source of it all to try and find reason and sanity in my own life, which seems to be sadly lacking in both most of the time. I realize this makes me vulnerable, and open to all manner of criticism – but the words pour forth from MY heart and soul, and they are what they are, and I am who I am. Love me, hate me, but please – respect me as you would anyone who endeavors to be true to themselves in a world in which it is becoming increasingly risky to do so.
I hope, too, that each one of us who shares this particular burden, on this particular planet, can come to the source of peace within them that I am in the long, arduous, but important and rewarding process of finding within myself.
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So I go on Facebook for the pick-me-up that it can be – but it turns into another mourning session of Duchenne Parents – crying, whining, supplicating and politicking for a cure. Most pathetic. We even toy with our boys brains by telling them that this is our quest. The worst thing about this disease, I think, has been that the people struck by it have no where to go with this pain, and so we turn to the ridiculous “hope” of a cure. There is none, and there never will be. And why is that?
Because everything we do, everything we ARE, everything we think – everything about being human is a fucking sacrifice – and nobody wants to acknowledge that. We think we are evolving, and we are not. We are going backward because we are human.
Example: When we invented the car, it was at the cost of a lot of deaths along the way – but we deemed the benefits of the car a risk worth taking. So what if some handle the machine irresponsibly…most of us will be able to travel to and fro, safely and quickly. The 1,000,000 people or so that get wiped out each year, well…that’s the price we pay. Get the idea?
So, if we go back to the caveman – what have we here? What is this ingredient that made us give a shit about each other, while the animals accepted whatever came down the pipe?
They are evolving – we are not. In exchange for being human, we will be hampered by our weak and sick. We will not mate for survival of the fittest, or abide by natural selection. When nature de-selected Philip, by fucking with his chromosomes, we decided to bypass nature. Nope. We are keeping this one, and 1 in 3500 others whom nature deemed unfit to live, reproduce, or to contribute in a tangible way. Which is one reason why we don’t worship nature…we have the free will to over ride it – supersede it, and continue to breed and reproduce whatever we want, whatever we get.
So what within US gives value to THEM? To the weak, the sick…, why do we care about the old and infirm? Why do we care about how people FEEL? Why do we care what other people THINK? There is no evolutionary reason – evidenced by virtually everything else on the planet, from the elements to the animals – they don’t CARE. They do what they do because it is for the betterment, the adaptation, the natural selection, the survival of the species. Not us. Nope – something is different here.
I see the parents of sickly kids through the years. Initially, it was institutionalize them. Let them die. Give them to the state to take care of. Ignore them. Then there was the movement to keep them home. We accepted our mongoloid children, our birth injured children with cerebral palsy, our spina bifida babies, our muscular dystrophy kids. Way back when we were a little more primitive, we just accepted the hand we were dealt, modified our lives accordingly, and did the best we could for our kids, limitation of life, activity, brain waves and all.
But now, that’s not enough. No, now we have to shout our pain from the housetops, but to what end? “We cannot – no! We WILL NOT accept the fact that our kid is handicapped!” We will publicly cry and lament and piss and moan this hand of cards.
Then we see the scientists working to stop the viral and bacterial plagues on the planet, and see that they’ve got a peek into inner space and what’s going on there, and we are silly enough to assume that we can make an adaptation to this disease. We’ve brought it on the species ourselves, kind of like the ol’ Adam and Eve sin thing. We’ve not been careful about breeding, and we’ve somehow created a genetic monster that we don’t want. And so we naively think that because we are at the threshold of beginning to understand a tiny fraction of the inner workings of life that “those guys”, those genetic researchers, must surely have the answer in their bag of tricks.
They don’t – any more than the Wizard of Oz had a heart, a brain, courage, or a ride home to another realm. But hey – if you want to put some money in their hat so they can experiment with this stuff – well, that’s mighty generous of you, but mighty foolish, too, if you are sacrificing quality of life in the quest for a cure. Our boys will sit and shrivel away in inadequate chairs, with inadequate therapies, and experimental medicines that turn them into lab rats; drug therapies, with only heartbroken families as the casualty when the experiment fails. Big deal – there are a lot more where they came from, and they can exploit our hopes in the name of a cure, and our desperation keeps them in business. My, how advanced we are, that we have now politicized the whole sorry mess. We have to lobby for rights, and money, and care. Is this really what we want?
What manner of fools have we become? Oh crucify me for saying it out loud. It’s the truth. Will we ever come to an understanding that this is the child we have, and we have to just live with it? Will we ever accept that? I hear the Fundraisers Battle Cry, “We will NOT ACCEPT THIS! We want a CURE!” Well, man-up, will you? You HAVE to accept it – it is what it is.
There is no cure now, and there never will be. Treatments are not a cure, and most of these are a lifetime away. The longer you put off embracing Duchenne, the longer you will see your son as a problem to be fixed, and not a person like any other person at their core – with all the value that we attach to a human life. Don’t you see how our refusal to embrace the defect that is Duchenne just turns the lives of our boys into some sick, sad, dog-and-pony show of begging for money for our pimps in research? We condemn our sons to be the sad and pathetic victims of a disease – rather than just a human being who is differently-abled.
Hitler could not accept dark skin, and dark eyes. This was abominable to him – something to be eradicated. An Arian race was the ticket. And so he set about to fight this plague with all the political clout he could muster with his eloquence. The man may be called a monster now, but let’s not forget he had a great big fan club at one time – that’s how he got to where he did. But he was smarter than us when it comes to eradicating a defect. He KNEW you couldn’t change brown eyes and dark skin. You had to eliminate it. He didn’t waste time trying to cure brown-eyed-ness. You had to stop breeding it, and get rid of that which already existed. Granted, the man evidently had no human emotion – but he did have animalistic logic: The only cure for Duchenne is to kill them all at birth. Don’t breed a known carrier, and test each kid before you get attached, so you can drown it in a bucket at the bedside. Not the cure you were hoping for? It’s the only viable one.
Yes, Phil…you will have to die to walk again.
.........
How does this factor in with loving others like you love yourself? As long as we see their genetic defect as a blight, how can they ever love themselves? And in turn, how can they ever reach out to love others, when they themselves, by the decree of their loving parents, are unlovable?
That’s an irony, a dichotomy, a dilemma of the worst order, and something they face every day of their life. As long as we are kicking and screaming for a way to change what we have come to view as a cosmic injustice, I guess each and every one of them will just never have been good enough, because they were born into bodies that we tacitly agreed to accept in exchange for being HUMAN!
Unfortunately, this disease is quite logical. It has no feelings. Despite the metaphors I am so very fond of, it is not a monster. It is not a tornado – it is not an animal. It is not alive, it does not seek to kill and destroy. It’s just a random, mutant package of genetics, that we, as people, agreed to accept because we wanted the freedom to procreate at will; to ignore natural selection and survival of the fittest unlike the rest of creation.
We are somehow different. I know that religionists are quick to interject god as they understand “him” at this point, to say we are the superior creation, created in “his” image. I do not see it that way. I DO see that we are unique among all of creation. We alone have desired to do more – to challenge the status quo of evolution, to cook our food, to work with tools, to congregate into cities, and to make things better, easier, more efficient, faster. We have lost a lot along the way, but we pat ourselves on the back because our brain was able to come up with some compensatory plan for that which we left go.
It starts with acquisition of food and water, which is all any living thing knows in its beginning. And we genetically adapted through the eons, but people took a different road. Animals developed things like faster speeds, better feet, losing a tail, or growing one as the case may be – all in a quest to survive and thrive. Diseased animals were discarded at birth. They did not go on to make more diseased animals. They understood, somewhere in their genetic coding that this would not bode well for their survival. Food would be wasted on a non-producer.
We went on then and created every problem that we are now running around willy-nilly trying to end. From the fact that there seem to be too many people concentrated in too little space, and eating up all the food, sickness and disease, to the political unrest that comes with a race of beings that feel they have any inalienable rights. Really, we gave up all those rights in the face of…LOVE.
It manifests itself in the fact that we have emotions – a weakness that made us soft, and weak, and will ultimately end in our self destruction. We made this choice – and now we really don’t want the outcome. It’s a bit late in the game to reverse this decision. There is no way out of it. And then we go one better and serve up to humanity a God that has the same weakness? I think not. We had our Eden – a metaphor for all that we gave away for a bite from the “tree of knowledge of good and evil”. It makes for a great story – because it gives an explanation for the ugliness we see in the world today, and few things are uglier than a fatal illness. But that’s the choice we made. Christianity has given it a name and called it sin…and went so far as to offer a Savior for it.
But God is only that which you wish it to be. There is no proof – there are only stories that were told and retold through the millennia, and we buy them because they help us to sleep at night. We want a Wizard who will pull our need out of his bag. We want a vicarious sufferer so we don’t have to. We had fine minds who cooked up a concoction of spiritual beliefs to wash our wounds with. And since it’s too painful to accept that this is what we are and this is what we do, we buy into it.
But is it really too difficult to see our sons as simply the less-than-desirous result of going one better than the animals? Shame on us for trying to get the animals to live according to our subjective and emotional reality. They don’t know this. They rejected this. Dogs did not breed like we have forced them to. Left to themselves, they had bred selectively, and there was no overpopulation. There were predators and prey, and a balance of nature. We opted out at some point. We wanted to go for a better plan. But this is it. We are the “car accidents” in the world of sacrifice for change. We want it all – but we don’t want the consequences. We want the freedom without the responsibility.
But it’s too late for that. We’ve got it. It’s all we’ve ever known in this generation: All the love, and the joy, all the war, all the pain; all the death and disease and fighting, alongside all the wealth, and happiness and life. It now looks quite pathetic to be supplicating the powers that be to take from us that which we have created.
There is a great truth in the story of creation – which is present in all religions by parable. At some point, we separated ourselves from the animal kingdom, from the creative thrust, and decided to go it solo. We got smart, like Lucifer, and decided to give the Source a run for its money. But we are the created – we are the experiment.
Or are we?
Maybe we ARE the creators. Certainly, since the “garden incident”, we have become the creators of our own reality...you know, the sweat of our brow that now only yields thorns and thistles? All the benefits of Eden that were tabled when we decided that we wanted to renegotiate the contract. Talk about collective bargaining.
So one has to come to a conclusion about all of this. Either there is a power that is greater than us, or there is not. I am looking at the empirical evidence and telling you that there IS. The odds of all of LIFE for millions of years happening randomly is ridiculous. The idea that our personal little hundred year sojourn here means anything at all is ludicrous. We freak out about “global warming”, when, in fact, the earth has been going through some major cyclical changes long before this generation decided to stare it down under a microscope. Bacteria was here before we knew it existed, or what it was, or what it caused. It wielded lots of power over us, and killed a great many of us before we figured it out and tried to put an end to it. But we cannot. We cannot Un-CREATE. Bacteria is here. It cannot be killed off. Matter IS. It can change its form, but it never goes away. All that is now is all that was then. We can merely manipulate it. And yes, we figure out new ways to manipulate shit every day of every year. We invent things, and build things, and discover things – and we will never understand or discover it all. Not while trapped in the bodies known as HUMAN.
Humans are finite. I know because I have seen what happens to them. There is a force at work greater than any collection of US, and we cannot stop the forward motion, the destruction called aging. And as we age, things break down, and ultimately our body gets to take its dirt nap, and we return to the dust from whence we came. We cannot stop it. We can prolong it – we can skirt it – but we can’t stop it. The only thing that cannot be stopped by this planetary process is the animating force inside the being.
Yet as long as we are stuck inside these little machines, with grey matter processing everything from the need to eat and shit to the need to love our offspring, to the need to believe in something bigger to get us out of this fix – all of it gets filtered through your brain. You cannot have an experience without your brain. If you can, we are not aware of it, and cannot quantify it – because someone, somewhere, will have to process the information through the grand computer of the human brain. And now it’s polluted. Good name for it – GREY matter – because it can take something that is pure white, and muddy it up in no time – so that the closest we get to white is a dingy grey.
So where is the redemption in all of this? What makes any of this worth it? Why isn’t suicide or genocide the answer? The Christians have served us up Jesus Christ on a cross as the answer to that which ails you, but I’m no longer buying that. I actually bought it and tried it on and wore it well for 15 years – but it never did fit right, and now it’s time for that frock to head out to Good Will. That story and its solution only lead a person into being a problem to be fixed – perpetually fucked up and in need of saving. A GREAT excuse to just keep fucking up – kind of like the old “I’m an addict” card. Addiction is not a disease. Duchenne is a disease – there is no choice in the matter. No bottle or needle or herb ever jumped into your hand. No sin ever accosted you and made you commit it.
Interestingly however, the state of sinfulness could very well be equated with the disease process – because we didn’t choose Duchenne, and we did not choose to be sinners either, now, did we? Just born that way, they say. Duchenne only gets 1 in 3500 a year – and you are telling me that sin has every fucking one of us from the birth canal? And the “cure” for that dilemma is the death of one guy two-plus millennia ago, but we won’t see the results of that cure until we are dead anyway? By that logic, then Duchenne has already been cured, too.
Okay – this is just not generating any hope, help, happiness or resolution in me. This sounds like a bad attempt at “mommy-making-it-all-better” by lying to me. Now Phil is not just a sinner, he’s a diseased sinner. The direction this is going is south – in a hurry. I need a better explanation. I need a better reason for all of this.
I need to know that every day is not just a waste of time. I need to know that there is some reason for my being alive, drawing breath, being born into the human race, which is intrinsically flawed with regard to the rest of the planet. I want to know why any of this matters at all. If it doesn’t, then I am pretty much done trying to do anything at all except survive my own life.
Yesterday, I was okay to just feel like I was about to drown, but today, I am feeling the part that wants to live, and the struggle begins. The primal urge to breath – to survive – to fight for ones life. But the vortex that is the drain I am circling just keeps spinning faster and sucking me down with increasing gravitational pull. I feel like I’m on the event horizon – going into the nothingness, and I don’t want nothingness. I want life.
And so I’m just going to go below deck again. The easiest way to do that is to go back to bed and sleep all day in a clinically depressed state. This will not do, however, as this is not what I am supposed to be learning here. I need to get into the observant position in my life, and see it for what it is in the big picture – and not get lost in the details and shit of today. What’s the worst that could happen? I will live through this.
I feel like a wheat field – which just got shit spread all over it. I reek. I stink. The gulls are having a field day in the refuse, picking out the goodies and further shitting all over me, tugging and pulling and biting me. In the pristine, snowy landscape, I look dirty, and ugly. Tire tracks and shit. I am in no way enjoying this.
But I know what I’ve got that no one can currently see. Seeds of wheat, properly germinated. And the ingredients in that shit are going to break apart in the natural process, and something good is happening there on a cellular level. Something beneath my surface will respond with that which is filtering down. On a microscopic level, all that shit is a very good thing as it interacts with the ingredients in me. It’s subtle, and quiet, and quite invisible. Faith in what is happening is needed, because on the surface it just looks for all the world like the most barren, miserable of fields; host to scavengers looking for a free meal of waste and scrounge. But underneath, is there life? Yes – it’s here. It’s moving, and breathing, and growing, integrating with me.
All of this is just an archetype - a microcosm – an analogy…it’s all part of the process – the LIFE process. The fact that we have added emotion and human value to our equation does not negate the circles and cycles of life. This was a process designed, set in motion, and sustained within a Source that is not bound by the same.
Like the power plant that simply generates our energy, it does not distinguish between power that is used to power a toaster, or to kill someone who elects to stick a knife in a socket. It simply IS. It offers no solution to the situation we ourselves created – none is required. It does not see our choices as good or bad, as only we can interpret that information. The same shock that re-starts a heart is the same shock that will kill another heart. We are responsible for assigning rightness or wrongness to any situation we find ourselves in – no matter how righteous, no matter how heinous. What we choose to do with the power we have is entirely up to us – and the consequences are entirely ours to bear. And in this model, I will be creating my own reality. And to spend my life lamenting what IS, is to spend it unwisely.
Philip is my son. I adore him. I love him for all that he is, genetic mutation, broken body and all. I know what I believe about the afterlife, and how it integrates with the life here and now. But it’s only MY belief. And someone else’s belief is just that – THEIR belief. None of us has any definitive proof that ours is the “correct” one. If we did, we would all believe the same. How many people disagree that we need water and air to live? The evidence is inarguable. There is no evidence for what one believes about the spirit world, now, is there? This has to generate from within.
Remind me, then, Sally, what I am learning here. To say that there is a “reason” for everything is too dumbed down. Too much of this life seems nonsensical. But put in the context of all I have spilled here for my sanity’s sake, I can make it make sense. I can be the wheat field. I can accept what IS – the hand I was dealt was the hand I was meant to have. What I choose to do with it here and now is my responsibility. I can mourn – there is surely a time to mourn. I can laugh – I can cry. I can shake a fist at the Source – and not fear retribution. I can stand in the sun, hands raised skyward and project a love, honor – or even worship – for all that this world is and all that I AM. I can be humiliatingly covered in shit – but know that this earth still turns, and the seasons will come and go, in a series of comedies and tragedies, all culminating in an entire experience that is incomparably beautiful.
I can know that when I reach the end of my brief human existence, that whatever accountability factor there may be, I will stand tall in the face of it, knowing I have taken all the ingredients of my life, and used them all in the creation of THIS life.
I can bemoan the fact that I have no yeast, and never bake a thing because of it – or I can look around and find the recipe for unleavened bread. And I can make a lot of it. And I can share it. Or if all I ever offer up is one bland communion wafer because that’s all I had – with this I shall be well content. No deity could have asked for more. In the end, it will have been enough. But this is up to me, and me alone. And in the final analysis, it is for me, and me alone.
My son, Philip, was born with Duchenne Muscular Dystrophy. Shall I make a list of all the things that each one of my children was born with? The features and the flaws? The assets and the liabilities? We simply make room for each one – and deal with each one in the manner that accentuates the positive, and eliminates the negative – just like any other kid – any other person – on the planet. The longer I put off accepting this as a part of the rich, rich experience that is my life, the longer I will remain trapped in a cycle of grief, running in circles, chasing my tail, and spinning a cocoon instead of a tapestry.
If I take the power from the Source, and plug in every appliance and cook up a grand feast with whatever I have on hand – and I am happy – how could there be displeasure in what I have created? If I, on the other hand, bemoan the fact that I don’t have a gourmet kitchen, and all I have is a hot plate, well – I guess I can spend my life in quest of a better facility, or I can get about the business of creating something with what I’ve got. Which will be a life better spent?
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Philip came home from school today. They had gone on a swimming field trip and stopped at the Chinese Buffet for lunch, and as I took his tray off, I noticed he was clutching a small piece of paper.
“What ‘cha got there?” I asked.
“My fortune. I saved it. It’s my fortune, you know.”
“What does it say?” I ask.
“I dunno – here – read it,” he says and uncurls his fingers for me to take the crumpled paper from his hand.
I don’t know anymore if tears are just easier to come by as the female anatomy starts the retirement process, but they arrived and blurred the words of his fortune for me – but not before I read them, and had full clarity:
“You are far more influential than you think.”
All I could manage to say was, “Right on, kid.” I leaned over and hugged his thin frame, kissed him on the head and whispered, “Thank you for being a part of my life, buddy!”
There is no cure now, and there never will be. Treatments are not a cure, and most of these are a lifetime away. The longer you put off embracing Duchenne, the longer you will see your son as a problem to be fixed, and not a person like any other person at their core – with all the value that we attach to a human life. Don’t you see how our refusal to embrace the defect that is Duchenne just turns the lives of our boys into some sick, sad, dog-and-pony show of begging for money for our pimps in research? We condemn our sons to be the sad and pathetic victims of a disease – rather than just a human being who is differently-abled. 
We ARE the creators & you love with such courage & spirit
ReplyDeletethank you for bringing your story here ,,,, truly profound
love ...