Posted in Being human, death, Death & Mortality Series, family

Saying goodbye to my dad.

Towards the end of 2014 was also the end of my dad’s life. He died at home. In his last few weeks, he couldn’t speak anymore. I was too sick to travel all the way across the country and into my parents’ house in the middle of the mountains. So I was the only member of our immediate family who couldn’t come to see him in person. And I couldn’t speak either.

We’d been doing video chats on Skype a lot. He’d talk, and I’d type, but mostly we just hung out and loved each other. But now neither of us could talk and he couldn’t type either.

When he became unable to talk anymore, my mom set up their laptop on my dad’s hospital bed, and started Skype video chats for us. Instead of talking or typing, we just stared at each other, and loved each other. And that’s how we said goodbye.

I never knew there were any photos taken at the time, but during the hospital stay after I broke my back a second time, my mom sent me this photo of me and my dad Skyping. I’m really glad to have these memories. I’m really glad we had the chance to say goodbye. I feel amazingly lucky for that.

My dad lying in a hospital bed doing a Skype video chat with me on a small laptop.

When he died, he sent me a chunk of his beard hairs. (When I was little, he always let me play with his beard and his loose skin.)

I have been wearing those in floating lockets ever since, and they’re really beautiful. Photos don’t do them justice. But I’m able to walk around with a piece of his beard worn as jewelry every day. My mom sent some more beard when I was in the hospital, because somehow in the lead-up to the hospital stay I lost my other locket, and my spare beard hairs are in a drawer somewhere inaccessible to me right now. So when she sent the other beard hairs, I was able to put them in a new locket. I’m equally grateful to have something physical and tangible to remember him by any time I want to. Beard hair is more durable than memory sometimes.

My father’s grey beard hairs in a circular metal floating locket.

And I’m really glad to have a father who understood how much can be said without saying it, who knew how to communicate using objects, and who spent his last days doing his best to love as much as he possibly could.

Posted in culture, family

It’s not a cowboy hat or an adventurer hat or a costume.

People react a lot to my hats.

Mel wearing a brown brimmed hat I wear all the time.

Maybe it’s because I’m in Vermont.  I don’t know.  People come up with a lot of weird meanings for my hat.  They think it’s a cowboy hat.  Or an adventurer hat.  Or some kind of costume.  It’s not any of the above.  It’s my father’s hat.

Maybe it’s an Okie thing.  People wear hats.  Wearing hats has specific meanings I can’t put into words easily.  I can look back in generations of family photographs and find people wearing similar hats, similar clothes.

ancestors with hats
Some of my Okie ancestors, with hats.

My father always wore a hat.  But he wore them for different reasons.

One of my favorite memories of my father and his hats was the way he’d wear it when he was headed out to do something important.  He might still be wearing his usual jeans and shirt, but the hat meant things were important and he was dressing up.  You could tell by how deliberately he put it on.

And he wore these hats as if the hats grew out of his head.

I saw hats in family photos, hats on family members, I saw the way people treated their hats, the way they touched their hats, the way they wore their hats.  Hats are important in my family and culture.

Ron holding baby Mel.
My dad in one of his hats holding me as a baby.

Dad squatting in woods
My dad squatting in the woods in one of his hats.

When my father died, he sent me a lot of his hats, and a lot of his shirts and suspenders.  I began wearing his clothes, or his style of clothes, every day, including his hats.

People told me for the first time in my life I looked comfortable in my own skin.

Me in my dad's clothes
Me wearing my dad’s clothes and hat, feeling utterly natural.

It wasn’t a conscious thing.

But the clothes started looking like they grew on me, the same way they looked like they grew on him, the same way similar clothes look like they grew on many of our relatives who dress similarly.

I started feeling more connected to him.

It sounds like a cliché, but maybe some things are clichés for a reason:  Wearing his clothes made me able to feel connected to him, I found the parts of me that he left deep inside of me when I wasn’t looking.  It wasn’t about how I looked in the clothes, it was about how I felt in them.  I felt connected to him, connected to my family, connected to my culture.  I felt things that have no words, no names, more depth than you’d imagine from a set of clothing.

But then I always connected to the world well through objects and the connections between them.

And, it turns out, so did my father.

I continue to discover him inside of me in ways I could’ve never imagined.

I continue to discover the things he has passed down to me without word or instruction.

And those things, that love, are the most valuable things of all.  They form connections and bonds between people.  They’re important.

Photo on 3-2-18 at 2.58 PM #3
Mel slouched over in bed wearing my dad’s clothes and hat, with my cat Igor looking on.

Mel wearing one of my dad’s orange shirts and hats.

So when you see me in any of my dad’s hats.  It’s not a costume.  It’s not a cowboy hat.  It’s not an adventurer hat.  It’s a connection to things I didn’t even know were inside me, between me and my dad, between me and my family, between me and my culture.  It’s remembrance and love but it’s so much more.

People are often taught to view clothing as superficial and vain.  To view objects as just meaningless dead things.  But clothing can tell you a lot about where you come from.  It can connect you to your roots, however loving, uncomfortable, and complicated those roots might be.  It can be a reminder of who you really are.

I’m glad I wear my father’s hats.


Posted in Being human

I’m never waiting to be alive.

Dad holding Mel as a kidThe last time I saw my dad, he flew out to see me in Vermont.  I was in my early thirties, he was in his early seventies.  Older than just about any man on his side of his family ever got.  Both of us were dealing with serious health problems.  We never said it, but we knew we’d never see each other again.

I think he’d only heard secondhand and thirdhand about how I was doing, for a long time.  Neither of us were big on phones or emailing at the time.  He’d gotten some weird ideas into his head over the years.  But they’re pretty common weird ideas to have.

At the time, I’d been very sick for years.  Doctors really didn’t know what was going on, despite looking.  I’d bounced in and out of the hospital.  They’d find out pieces the hard way, but something more was always going on than what they’d expected.  They could never really figure out what.  I’d always get sicker than I should under the circumstances.  At home I was mostly in bed.  I’d use a tilt-in-space powerchair if I got up, but every second was exhausting.

Anyway, I wasn’t constantly looking for a cure.  I wasn’t holding out hope that one day someone would figure out everything, and my life would be better.  And longer.  And easier.  Or whatever.  That just wasn’t where I was focusing.

Somewhere along the way, he’d mistaken that for giving up on life.  People do that.  They don’t get it.  At all.  That that isn’t even the thing.  I wasn’t depressed or hopeless.  I was reasonably happy.  I didn’t have a death wish.  I hadn’t accepted my fate that I was just gonna die and that’s what happens to people like me.  It wasn’t any of the stories people tell themselves about disabled and sick people to make themselves feel better.  And I wasn’t doing what some disabled people do, I wasn’t repeating those stories back to myself.

I just wasn’t on their map of life at all.  And most people, they don’t want to look too hard at the place I was.  It scares them.

Anyway, my dad was genuinely worried about me.  I wanted to make him understand.  And I struggled to find words.

I told him I’m not waiting around to be alive.

I’m not staking my happiness on something that does not happen to most disabled people, ever.

I’m not staking my happiness on certainty.  Even healthy people don’t have the certainty they think they have.  Nobody does.  You can’t actually ever be happy that way, because you’re grabbing something that’ll never be there, unsatisfied without it.

Honestly I’m not even staking what I want to do with my life on happiness.  I’m reasonably happy, but if I’m not, I’m not gonna wait around to be happy before making a contribution to the world.

Because there’s nothing more that close shaves with death and living long periods of time with Death as almost some kind of companion that’s nearby but not quite there, has done to me, than made me want to do things for other people.  When I can, of course.  And not in the weird sense like you have to have a job to do that, because that’d be ridiculous.

Anyway, I was insisting pretty forcefully that I don’t know how much time I have and I’m not gonna spend that time waiting for something that just does not usually happen to people.  I’m going to do whatever I can with whatever I can to live the life I can, like anyone else.  I’m not different.  And I’m not fucking waiting around to be alive, especially if I don’t know how long I have.

I was pretty intense and fierce and passionate about this and he could see that.

And something shifted.

He went from seeing me as giving up on life, to someone who was living my life.

And I think he finally went from seeing me as a child he worried about to an adult he thought was gonna be okay.

I don’t remember what he said either.

I just remember you could feel the air shift, like he had not even realized what I was doing was a thing you could do.  And as soon as he understood, he knew I’d be fine no matter what happened.

We hugged, and we cried, and he left.

He died before I ever saw him in person again.

I… wasn’t cured.  But they figured out what was going on.  Really three things that were going on, one thing after the other after the other.  One I’d been born with, one probably developed ages ago, and one had started recently.  And they treated or modified my body to handle those things.  And I’m still alive long after I would’ve been if they hadn’t.

I’m not cured.

My life is not any more certain.

The treatments have their own risks.

I’m alive right now and that’s all any of us can say.

But my health is precarious.  It always will be.  Everyone’s is.  Mine is much more obviously and easily.

And all of us have to make a life where we are, not where we might have maybe could’ve been in the future sometime if we hoooooooooope enough for a cure.

Like yeah if they can do something that’ll keep me around awhile, I’ll do that, and I’ll adapt, like I already have.  But knowing how limited time can be, I’m sure as hell not gonna spend that time just waiting.  Even when I can do nothing else but keep my body breathing and my blood pumping and I look like I’m waiting, I’m still living.  Life hasn’t gone anywhere.

And really what already happened was extraordinary and rare.  The chances that all things came together so that I was still around and they happened to be looking in the right direction to figure things out (especially since they’d already tried those directions before, but wrong, and figured they’d found nothing)… that really doesn’t happen to too many people.  It makes a good story.  People like to find it inspirational.  It’s not.  I got extremely lucky.  If people sit around being wistful about that not happening, and not doing life in the meantime no matter what it looks like, they’re gonna have problems whether it happens or not.

And to be clear — I’m not half dead.  I’m not partially dead.  I’m not dead but still being kept alive.  I’m right here.

But I’m alive.  Until I’m not.  Like everyone else.  My body and my health and all that doesn’t change that in any way.  I’m not less alive, partially alive, technically alive, creepy-artificially alive.  And that’s gonna stay true no matter what until I’ve actually got a toe tag, guys.

(In which case have me composted and dump as much as you can of the results in the ground in Redwood Terrace as close to the Mother Tree as you can get, if you want to know.  But not until.  Geez.  I have all the time in the world to feed trees and fungus and crap, and I’m glad to do so, I think it’s a wonderful thing in fact, but I have to actually be a corpse first.  And there’s plenty of people who seem determined to declare me a corpse while I’m still breathing.  And I will fight them as hard as I can as long as I can for me and others.)

But right now. I’m alive. And I’m not gonna spend my life waiting for a cure that’s unlikely to happen. I’m living right now. Always. I don’t wait to be alive. And as soon as my dad realized what I meant by that, he knew I was gonna be okay no matter how long I had left.