Where Does This Language Come From

I sit here stunned and need a place to put it. This morning I found a diary (that’s what the author calls it anyway) hidden in the bed of one of the boys with HIV/AIDS I care for. Dylan is eight. Apparently, he’s quite a writer. I had no idea. Do I feel guilty for scrounging around this diary. Not really. I would seriously like to know where this talent for language comes from.

His parents were junkies. Both dead.

Dylan is on the computer a lot (I refuse to believe this is from the computer) and it’s hard for me to get him to even crack a book. His favorite books are the Harry Potter books, but Dylan’s writing leaves Rowling in the dust. Most of the diary is poetry. Some narrative. I thought you had to LEARN (accompanied by sweat) how to do this. Dylan does not attend school. His HIV has prevented it. Anything “literary” that he’s learned, he’s learned on his own.

I can’t quote him because I don’t have his permission (yet). But I am going to tell him I found the book. His subjects are: love, sex (which mystifies him but he was born with HIV so his connection to sex is visceral), friendship (who likes who in our family and who doesn’t and who’s in who’s out and why he loves his pet pig), and loss. Some of it is in Spanish (we now live in Mexico and he’s learning Spanish and faster than I am).

But it’s the subject of LOSS that knocks me on my butt.

One of his “brothers” died last week so Dylan spills his guts in this book and writes and writes and writes. It’s the excrutiating LOSS he writes about that concerns me (and frightens me) and why I have every right to read his stuff. Dylan had testicular cancer and one of his testicles was removed. He writes that if the other one starts to hurt him he will refuse to tell me because I was the one who made (he says forced) him to go through the surgery which he describes as a living nightmare in hell. He describes his love/hate relationship with me in vivid detail. Poetry is not a dead thing in this book which certainly wasn’t written with an eye toward publication but maybe it should have been.

Even the spelling is flawless. I wish I could say the same. He speaks to how he has discovered writing and (choke) wants to be like me but he doesn’t understand why I am so angry with publishing and he wishes I wouldn’t hate it so much.

Something tells me he’ll find out on his own.

I just read it cover to cover. I will have to read it twice. Then I am going to call him in and tell him that when he is in pain he must tell me. THEN he can put it in his book. He will be angry I violated his privacy but I have lost too many of them who kept all their secrets.

Where does this language come from. This ability to speak to pain with symbols. I wonder if he will give it up now that it no longer belongs entirely to him. I wonder how I can keep him at it; if I even have those skills. I wonder if his next subject will be betrayal.

13 Responses

  1. from the mouth of babes…I
    from the mouth of babes…

    I don’t know if I could do what you do, working with these kids. I give to AIDS research, which is easier than what you do, but at least it’s something.

  2. GiftSeems to me that this

    Seems to me that this young man is proof that true writing can be a gift.

    I would love to read his journal, you’ve built up quite an anticipation for it.

  3. The DiaryYou wrote:”Then I am
    The Diary

    You wrote:

    “Then I am going to call him in and tell him that when he is in pain he must tell me. THEN he can put it in his book. He will be angry I violated his privacy but I have lost too many of them who kept all their secrets.”

    So, he’s lost his parents, numerous friends, and one testicle, and now you’re going to tell him he can’t have his own pain, and he also can’t use his talents unless he gives up that pain?

    Because YOU’VE lost too many of them? My, how arrogant. They’ve spent their short lives in pain and lack of hope, and now you are the one suffering?

    Why not call him in and express your wonder at his talent, share the joy of his art with him. And what is the wonder that he’s 8 years old? Share Carson McCullers’ writings with him, or tell him about Mozart (Both were young artistic geniuses).

    Give him a reason to share his pain, don’t just become another hammer held over his head, another control to separate him from his grief or his joys.

    Oh, here’s another clue: spelling comes from reading. By 3rd grade, I could outspell most of my teachers, because I read a lot more than them.

    So, he’s a reader, and a natural writer, a born artist with an angst as deep as the sea, and with an intimate acquaintance with suffering and death. He needs nurturing and encouragement.

    In Japan, there is currently an epidemic of suicide among young people. The response is that everyone works at trying to convince the young that there is a good reason for living, and that suicide isn’t really necessary. But no one suggests that suicide is not a right.

    Hard as it is for westerners to accept, suicide is an individual act, governed by the self, and others can persuade, but in the end they cannot control a decision to commit suicide.

    This young man’s pain, and writing, are his own to control. Let him know he has that right, that power, and then let him decide whether to share.

  4. It would be cruel and stupid
    It would be cruel and stupid of me to judge anyone in this. I can’t tell you how important it is to contribute to AIDS research. The Bush administration has settled for the status quo. They want you to believe that AIDS is like diabetes. Innovation is squashed and what is tended to is the bureaucracy and the NIH funding source. The religious right has put enormous pressure on the government to leave AIDS alone. No monies go to America’s AIDS programs or foreign AIDS programs that focus on even the word condom in educational literature. The Commerce Department is implimenting foreign economic embargoes to punish countries that manufacture their own AIDS drugs. America’s response to a world-wide pandemic looks like greed even if it looks fantastic at the public relations level. The reality is another picture and there are many of us out there in the trenches digging the graves who feel strongly that the response to AIDS by American politicians (where funding for a cure is nonexistent) is genocide. The ONLY hope for anything like a cure is coming from the private sector and places like China where there are real human trials going on. These trials are not (not one) being conducted by American pharmaceutical companies (who claim R&D when, in fact, the drugs they currently offer were developed by anti-cancer research conducted in the 1980s and whose patents became available to them by appropriation and they have done almost nothing themselves in R&D except make tens of billions in profits where the American public essentially gave away the biggest corporate welfare free for all in American history). The people doing HOPEFUL, basic research are small little firms focusing on viral genetics. Their funding is purely capital venture. The government has gladly given up and has made their right wing constituents quite happy. The only hope rests in innovation and committment. That costs money. What I do is simply put a face to it. These boys are human beings and mostly they were born with the disease they live and struggle with. They are not faceless. Finally, we couldn’t do it anymore in America. The cost alone (most of it to feed pharmaceutical companies) is about $100,000 per child per year. We DO use cutting edge drugs. Or these boys would be dead. We do not live high on the hog. We’ve been able to cut that cost in half by moving to Latin America. Our AIDS drugs do not now come from the US. NO ONE can afford them, and what the government will pay for is so limited as to be a complete joke. NONE of the effective newer drugs are even recognized by the government. Their response is dated, punitive, limited, and bureaucratic. It gives bureaucrats and social workers jobs. I recently spoke before a group of social workers who were very concerned about their funding next year. I said: hopefully you won’t be funded next year. Hopefully there will be a cure. A literal gasp from the audience. They could all lose their jobs. When I got to the part about AIDS drugs, drug company reps threw their metal chairs against the wall and stalked out of the auditorium. It does NOT help anyone get better. Our drugs come from Brazil who is doing far, far more getting these medications to the third world than anything America does, and this is in defiance of America (the Brazilians are really angry with the US for dictating to Brazil what drugs it can and cannot sell, and essentially Brazil has told America to take a flying leap). My job is to tell the stories of the boys I know and my RAGE with publishing is because: “This will just depress our readers.” I hear this knee-jerk litany day in and day out. THE RUNAWAY BRIDE gets published — Amber Fry gets published — but I can’t. America’s escapism runneth over. Publishing is indifferent and irresponsible. History is going to look at this indifference very critically considering the numbers of the dead and dying. Do not believe the rhetoric that AIDS is now like diabetes and can be managed by everyone who has the disease. We lose boys all the time. I simply, seriously cannot dig another grave. I have dug enough graves. In publishing, my own, time and time again. There is not an editor out there who does not loathe me. To say they do not take my calls is an understatement. I am this uncomfortable burr up their butts. So I turn to the Internet and in that electronic reciprocity I find people like you who give me hope. I need something to cling to because I love my boys. Thank you. Nasdijj

  5. This morning at breakfast he
    This morning at breakfast he says to me: “Okay, Dad, you can use it to write about. But I still get to say in it what I need to talk about. And I don’t want to read the emails when they come because they will probably hate me. I remember when they burned the cross in our yard in North Carolina.”

    Me, too. — Nasdijj

  6. goodthat he writes. Are you

    that he writes. Are you the first reader, no? There are different forms to socialize a text. Sure you

  7. It is SO easy and SO lazy to
    It is SO easy and SO lazy to intellectualize the suicide of a CHILD. I don’t give a damn what they do or don’t do in Japan. It is utterly irrelevant to my life or my son. It’s a little different when you’re rocking and reading to a living breathing CHILD on your lap. But in my arrogance I guess I am supposed to watch and stand by and do nothing and be passive while he kills himself.

  8. Nasdijj,You have no e-mail

    You have no e-mail here. Mine is on my profile. You are welcome to use it.

    I have held numerous people in my arms as they died, sometimes at their own hands. I have held and rocked cancer patients as young as six in the few days of life they had left.

    My concern was that you would take something so private from him in order to gain a little comfort for your own future.

    I also had my writing taken and controlled when I was young. I wanted to be certain you were looking at this from his perspective, not your own.

    Perhaps I looked at it too much from my own perspective.

    And yes, it is damned hard.
    for everyone.

  9. It was a huge step for Dylan
    It was a huge step for Dylan to share the things he did. For Dylan to even admit that he has anger is like pulling teeth. Anger rocks his boat big time. Dylan spent the first couple of years of his life in a crib in a hospital. We talk about books here. The pretty books there were displayed (sort of like books in a bookstore) on a high shelf where the drooly little children could reach but never touch. No one had time to read to them. I thought there would be a lot of crying there. Babies. It was haunting. The place was entirely silent.

    Dylan was mute for a long time. He then went to a foster family where the mother’s boyfriend (or whoever he was) terrorized Dylan in ways we will probably never know but I have no doubt in my mind were sexual. Let me rephrase that. Rape is never sexual. But it does make a huge impression.

    Dylan has a lot more courage than I do. He looks his ghosts in the eye and although Dylan may be terrified (loud voices cause him to utterly lose it) he might shake but he never runs. It’s only when the monsters are gone that Dylan disappears like smoke down into himself. Reaching him is more challenging than any white water rapids could ever be madness upon the rocks.

    For Dylan to articulate what he did today astounds me, and I am glad this place on the Web was there for him, and I’d like to thank all of you. It wasn’t any of MY places on the Web and that meant something to Dylan. His story his way. If the choices had been any of MY places on the Web, I would would have gotten the old Oh, You Love Me Anyway Routine.

    Dylan POURED over every word of the comments related to his post.

    He printed them out and took them to bed and his literary world illuminated by flashlight. He will read them a thousand times tonight.

    They are his reviews.

    Dylan loves stories. You are the people he would like to become. To be a part of what you do. Dylan is so pointed inward no one in his life ever believed he could write what he wrote today. All Dylan needs is opportunity. There are always monsters that are going to scare him. Dylan is learning how to keep himself intact. It KILLS me to watch him struggle. It want to solve it all. But I can’t. Dylan had to start speaking for Dylan. Dylan used to speak in sign. It was safer than making sounds. I had to start holding his exasperated hands. “Speak.”

    Finally he did.


    Finally he did.

    Dylan straddles a chasm of catatonic, paralyzing white water rapids. He can disappear on you into those places where he hides and retrieving him is often life and death.

    Like a wet, drowning cat.

    Nevertheless, he is a beautiful, broken child, and he breaks my heart nearly every day. What he did here is the exact opposite of the catatonic Dylan who holds him firmly in all his silent shadows from the past.

    Today, Dylan even speaks of death. That is not the Dylan I know. Even at his brother’s funeral, Dylan spoke to the now dead boy as if he were alive and there. Until today, Dylan did not accept that death. It was only in the context of the story Dylan was allowing to unfold this afternoon that he could be honest about what actually happened. Someone he loved died and although Dylan thought that saying it or writing it might crush him, it did not.

    It did exhaust him. I had to put him to bed after writing his story because it took everything he had. And I was reminded of all the writers who do, indeed, sweat at every word. Dylan is a writer now. Trial by fire.

    Sometimes it is everything I can do to keep Dylan alive. But when I see him carefully typing out his words, I’m paid in spades. Dylan is worth fighting for and you’re right, I do have a hammer, and I do pound it much more loudly than I need to. Dylan and I have been through hell together. I understand (his doctors will not) when Dylan says “I can’t do chemo again.” I will support what Dylan decides even when it is very hard to do so. I just can’t lose Dylan. He has enough in there to write down and articulate and tell his stories and become the gift that he is not to me but to everyone his path might cross. My hammers pound away. My soap boxes rust with age. My message is an echo. Those things are nothing. The smoke. The mirrors. The camouflage.

    People ask me 365 days a year why do I do this over and over. I do it because if you would be but patient with them, and gentle, you, too, could see them for all the breathtaking beauty that they are imbued with. A child is not defined by a virus.

    And you would know what I know and that is the miracle that they could change the world.

    Thank you for giving Dylan a place to put his voice. Something tells me we have not heard the last of it. My goal is twofold; to put a face on the enigma that is AIDS. My other goal is to keep my boys alive. You can email me anytime. We live in Mexico and I am Nasdijj@Peyote.com

    — Dylan and I thank you.

  10. Thank you for the realistic
    Thank you for the realistic picture. Greed. I despise the high cost of medicine.
    I will continue to read what you choose to share and I will bring the problem to the attention of others in whatever small way I can.

  11. What a brave child….What a
    What a brave child….

    What a brave child Dylan is. He sounds like an old soul. I too had testicular cancer (I’m 31 mind you, not as young as Dylan) and it was Buddhism that got me through the whole ordeal. My wife and I just had our first child last May and when you have kids, life is so much more precious. I really want to be around for another 50 years to see this little person grow up.

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