Clocks Of Our Own Creation

There's a boy. Just a boy. I don't know him or his parents. I don't even know where he lives. But I don't need to. I keep him in my pocket, close to me.

This boy is 10. He has Duchenne. His family documents his time here on video. He is not doing well. I write in the halted way my heart feels for this small and new person who somewhere, out there, has just found out he is dying. His heart has really broken. He's in pain. The doctors have sent him home to die. Ten. Of heart failure. How long is ten years? Not long enough to have even seen or done anything of his own. To have finished making himself yet.

When a kid is diagnosed with Duchenne, their parents are given a trajectory, a guessed path he will take and then we build the framework around that. We mark in our mind whether he moves faster or slower than the promised timeline, whether he falls, whether he walks, whether he breathes freely or labored, and whether the sound of his heart swishing and pumping moves in the right rhythm at the right time. And when. We clock these like a four year old measures themselves, their back to the kitchen wall. Bit by bit, but you can't really see it happening. Every step thinking, is this too soon? How can we fend this off longer? We rely on this idea of a calendar to plan our time, stretch it out, place our hope like a hat on his head. We dream of longer, farther. We gun for twenty, thirty years in our dreams. It's possible. The men, who live to grow despite this break in their DNA, tell us we must expect our children too will go farther. The researchers would have us hold out hope long enough to see it to fruition for the next child born who can't outrun their DNA. But we rely on these clocks and what they say to hold us together.

I would be lying to write that mourning is something that is easy, or fun, or any kind of upbeat thing you can imagine. I also can't say I was an optimist before all this. I am a mix of hope and mourning, probably, in all things I do now. But to say that we are only allowed to hope, we must keep it up or risk failure, impact his health (as more then one misguided friend has suggested) is to negate the powerful force that mourning is in us when we know, with too much warning, that our most important people are guaranteed to be lost in front of us. That our children will be taken from us. The expectation that we must stay pollyanna-ish upbeat, to be noble, or to work tirelessly without ever turning to look at our pain, in the face a child who may suffer, may hurt, may take their last breath, is a disservice to the children who do go early.

It is true, there are men with Duchenne, married, having babies, writing books, you know life, who remind me every chance they get that I should expect this for Milo, and for that I am grateful. There are also men and women, living full lives, despite some pretty fucked up circumstances with whatever disabilities they have, and they do it, not with sentimental tokenism, but by taking what they want and doing what's hard despite.  And our family feeds off their energy and dogged determination. But there's a schism between what they think I should feel and how I do feel.

I want to honor the kid who might not make it. The kid who may never have had a meaningful conversation about what's happening to them yet, who expects to live, to grow. But doesn't. The kid who may be mine. Or not. Feelings of mourning are needed to bear witness to children who die. For me to survive such a thing. I sometimes need to stop the timer and just spend the day looking deep into very dark and wet eyes.

Hiding the Information

Many people I know are in a state of hiding from their children. Odd, if you think about it.

Until you think about who I know. Parents of kids who have this monster keep a lot hidden. Until they can't any longer.

Like me. The beginning was simple. We told him what he needed to know. 'Your muscles don't work the way you tell them to', we named the things happening as they happened. We were in no state to tell more anyway, so the fact that he isn't the kind of person to ask questions meant we were off the hook. And still are. When he was six we told him it was Muscular Dystrophy ('stupid muscular dystrophy' 'save your steps for the fun stuff'). We eventually said the word Duchenne. There is a difference. To the parents who may have to say 'Listen sweetie, this shit's gonna kill you someday', to not name it is a struggle. Something to control. But really that is never true.  You have nothing you can do to keep that hurt from coming to your child's doorstep. Nothing.

So even now, we wait. For the right moment. He's not stupid. He knows his heart is on the line. His lungs' power has to be measured, worried over. He won some lottery no one tries to win. The gene pool is poisoned.

He knows this thing has taken his every physical ability away as soon as he has mastered it. He is an incredibly astute and intelligent person. So though he's never heard my mouth say the words, I know at some level in his bones, he knows. He knows the logical end. Not when, not how. The only thing left is waiting and hoping for the right moment to come and lay itself out so naturally. To tell him. It's his life, his right. But how to know when the when? The internet awaits. The great repository of information at his feet, with every inherent wrong answer, every answer I can't be sure he'll understand. But that is my trying to control. It won't change what happens to him.

But it will change how he feels. I'm trying my damnedest to give him every moment free from the knowledge that the clock is not his friend, that his body is not his friend, that his life is marked for some inevitability that I can never protect him from. Trying.

On Friendship Then

   I have this friend, who once mentioned to me a theory of hers, that I took to mean: girls' friendships are enthralling, like being in love, but as you grow older your relationships mature and they are no longer primary or ecstatic. There's no longer time, energy, or hormones for all that anymore. You have to go to work. Or feed the kids. Or your kid has a terminal illness. Or you're just lazy anymore.

   Another friend of mine wonders why she doesn't make the kinds of tight knit bonds with women she has seen other women make her whole life. She's outside looking in. But she says she doesn't mind.

   I, on the other hand, am a hyper social person, wondering what is outside, where the people are, what am I missing. I don't like to miss anything. If someone is doing something, I have always been the person to drag my sorry butt outta bed and go do it, too. I like people. And I know and love some amazing women. There's no shortage on quality.

   But most of my friendships are virtual or fluctuating, the neighbors who move across town, or the faces that change on the school yard, or the friends who move to another state for their partner's new job, or the friendship is based on the fact we share a similar fate (but little else in common).

   Time doesn't touch some eternal friendships, but it doesn't mean you talk regular either. You just know you can if. Like you forget about your garden all winter.

   And of course, aging doesn't help. Friends stay home. They can't find a a sitter. Or have an early commute. Or, god forbid, they are younger, and have energy, and are single, with no kids. And you despise them for it. Mostly, though, I have the feeling the world (friends, other family, distractions) will eat up all I have left. It takes energy to explain your life when you have extenuating circumstances, or to be close, or to do for others. It's hard to look people in the eye and say 'I'm really doing fine'. So I abdicate. I am a poor excuse for a friend at times. I need too much of other people, with not so much available in return.

   Luckily, there's plenty going on at my house. It's chock full, five of us happily crammed in this little house, plus some furries. It's easier to stay in. I like them all. Right now, there's a flute, a piano and a ukelele cha-chunking and ker-fluttering a rough and silly rendition of a Satchmo tune downstairs. I guess that means I don't need as many outside distractions. Today.

So Hello.

   I've decided to start writing this blog again. I've been off, you might say, looking for other distractions from myself, but really it's time to sink back into a healthy daily habit of writing. A casual friend wrote a blog post here on the perils of adult friendship (or the lack thereof) and it somehow led me here. 

   In a roundabout, I realized that what I have to say can no longer fit squarely into a neat little package, that the reason my big mouth has been getting me in trouble in the last few years is that I am expecting a contraction of who I am, a yoga pretzel instead of standing up tall. I have pussyfooted with writing honest letters with my oldest friend, who is also a thwarted writer and has moved far out of my reach. She has never actually been given the chance to open an envelope. I occasionally mark up a page or two, or get amped about a something I want to write, or I could write, or I have things to say about, then I let it float away. I talk with other writers about writing again. And how I should. I don't make it important. I negate it.

   Working erratically from home, with mostly my kids for company, several of my closest friends having moved away in the last year to the other side of the country, and one friendship (surprisingly) having crashed and burned in the last year,  I am feeling the lack of close friendships. So maybe it's time to befriend myself again. Writing is my narcissistic way of saying hello again to myself, reminding myself I'm worth it. I'm worthy. 

   So hello.

   One thing to think about, if you somehow found yourself here, reading this. If you are here because you know me outside of Duchenne, you will hear a lot of death you might not be comfortable with. If I tell the whole truth. And that's okay. And if you're here because of Duchenne, you are more than likely to hear something about living you aren't comfortable with. If I tell the whole truth. And that, too, is okay.

Long Time No See

It's been a long hiatus and I'm feeling like the time might be right to start over. I just refreshed my memory on what I'd written six months ago. Lots has happened since then. I wrote about my friend who was battling a mystery illness. Her name was Amy and she died maybe two weeks after I posted about her. I think she was 39.
We always mythologize people we love who die but she really was pretty cool in a stealth quiet kind way of shining. She was someone who really knew about pacing herself. And pie plates. She had things like 5 extra pie plates, one from her grandma's house across the street, one from the flea market, maybe a few left over from a party. She was that kind of person. She didn't just have the one "perfect" thing, b/c she wasn't worrying what people thought of her. She just had what she had and was just in herself so calmly. That may seem to be about material goods but it shows her spirit. She didn't have a dining room table. She cooked food on this vintage stove, home cooked food mind you and fed her children lovingly. Then she sit on some kid chair and feed herself. You see what I'm saying here. She was living but in that zen calm that just is. Maybe that seems silly and for sure she would not have put it that way but that's how I remember her. She didn't seem to care if dirty dishes were piled up when you came over, she was too busy being with you. Or gardening. I guess I see that in a golden light b/c I so need even just a little of that in my day.
Amy left behind two fairly amazing children and there's nothing golden I can possibly make of that. (Pause to weep a little)

That of course brings up M7(!). He's doing fine. In his own way. He can fold himself into a yoga pretzel and for that I am so grateful. I can't think of any more hopeful sign. He's still falling and everything, he's got some weird physical stuff going on but mostly the kid is fucking alive and that's all I care about.
Not that I can honestly say we are living life in some new way. I think we are still losers who yell at kids. We struggle to get them places on time, have a hard line as far as rules. Screw it. When does the fun start? When do all these "memories" we're supposed to be be making (cue disney music and starry background) goddamn start?
I'll let you know.

No need for a title

Give sorrow words.
The grief that does not speak
knits up the overwrought heart
and bids it break.

Shakespeare

On Death and Trees

Today, I was rereading a memorial website for a friend who died three years ago.
This is an entry I forgot I wrote:
Tomorrow is Dia de los Muertos and I sit trying to figure out how to remember the people that are gone - just gone. I don't know how to burn them into my brain. I know that's what needs to be done, sear them into some part of my flesh to carry them on, bring them with me. I've lost someone every year since I became a mother, so much so that now I see a pantheon: whenever I think of one, the rest piggyback in, like a Greek chorus, squeezing all together in one small brittle heart. I can only hope that Matthew is finding a kindred spirit with my Gramps, that my Grandma Millie is not driving him nuts, that he welcomes my friend Leah's mother, who died a painful and sudden death last week, and helps her through whatever horror that is. I see Tim Krafft, looking all the 50's poetry beatnik, fully recovered from his overdose, talking to Matthew about noises and how to make them. Becky might dance as Matthew plays though it's not to her taste. This is my comforting delusion. Maybe it's all a crutch and they really are just feeding trees but I hear them talking to each other, making new family as they need to, finding comfort and watching us, sharing friendly gossip about the ones they left behind. And that's not far from a wisp of wind, not too different from providing nutrients for the earth to renew and grow. In fact, it could be exactly the same thing.
(Posted by: Queenie at October 31, 2004 06:46 PM)

I can only plead the universe that's true, for M's sake and for mine.

One Thing To Be Proud Of

Today, walking down the street I had an encounter that I've had far too often.
I passed a homeless shelter (that's not the familiar part) in front of which a couple of guys obviously down on their luck for more years than they can shake a stick at, were hanging out. Now, I'm not particularly shy about being a white woman passing a group of brown men. I was raised that you greet people on the street (yes, this was Berkeley in the 70's), especially people of color, especially older people, especially people with disabilities, etc. I have always been the sole white girl in the cholo neighborhood or the Black Panther neighborhood. I have spent more nights in West Oakland or in the Mission or in West Berkeley when the low riders still ruled, than most people I know of any color. I have worked in East Oakland, I have walked the streets of Richmond or the Acorn housing projects in West Oakland registering people to vote who didn't have their electricity turned on, getting cat calls the entire time. I have been that sole teenage girl riding the bus into Oakland every Saturday night at 3 AM. Ok, so that's the background, back to being proud.
Walking the gauntlet is what I call it. You pass by a bunch of guys who you're not sure if they'll hassle you or not. There have been phases of my life when my reactions have ranged from cursing someone up and down (endangering myself), ignoring them and looking away (leaves me feeling so ashamed), trying to give some pathetic excuse for a steely glare (well, that's pathetic). None of these leave me feeling GOOD which is how I have a right to feel. I mean, I was just walking down the street, minding my own business, thinking about cats or honey mustard being good in egg salad or how maybe I should learn to change my car's oil myself, you know the kind of meaningless reverie that is a luxury for me (no life-altering disease stress, no kids yelling).
So today, I walk the gauntlet. I pass delicately through a small opening in their sidewalk monopoly. I avert my eyes and fiddle with keys, feeling obvious in a pretty skirt. I get just two feet passed and one of them mutters, 'she's gone all Amazon and sh**'. They laugh at me together. Feel the blood boiling.
As an aside, any of you who know me will logically and correctly assume I have heard this particular comment more than once in my life. I'm six feet tall and even when I starved myself when I was fourteen I would have still had the moniker 'big-boned'. Add two kids and much eating and I'm a Big Woman. So, you can see, this is actually the form my sexual harassment has always taken. Occasionally it's the 'hey baby' sort but usually it's this particularly annoying variant. Back to the story.
I stop, turn right back around and directly but politely say 'I think that's pretty rude' to Rudeman. Another one of them says 'you don't even know he was talkin' to you, he coulda been talkin' on a cell phone' which is funny now b/c I was standing right in front of Rudeman and he so obviously didn't have one (points for creativity?). So I sez (granted holding back tears b/c I get so emotional when I'm mad) 'I like to treat people with some respect' and I turn to a third guy and say 'I'm Queenie (insert real name)' and reach out to shake his hand. Then I went around the whole crowd of 4 men until I got back to offending Rudeman and without saying my name reached out and shook his hand. Then I walked away. I felt pretty damn proud of myself.

But later I still walked all the way around the block to avoid them. There's proud and then there's stupid.