Posted in family, friends

What family means to me.

Family means everything to me that it means to most people, but it also means more things.

“I love you” in American Sign Language with a rainbow hand.

Which means when I use terms like birth family I am not using them the way some people use them. I am not using them to either make it more or less family. All of my family is family no matter how they came to be a part of it.

I do not like using the words chosen family. I think that is a wonderful concept for those who experience it that way. It’s not how I experience family at all, no matter who the family are. I have not chosen a single relative, whether biological or not.

I won’t get into what makes someone family if they’re not biologically related. I’d never finish the post.

But love is a lot of it. And being in my life in certain ways is a lot of it. And I’m incredibly grateful to everyone who has become my family in this manner.

But the important part.

The really important part.

Is this.

Having non-birth-related family does not take away from either my relationship with my biological family, or my relationship with my non-biological family.

And I do not, in my head or my heart or anywhere else people use as words for thoughts and feelings, I do not put either biological or non-biological relatives as more or less important, more or less loved, or more or less part of my family.

You’re all family.

And I love y’all. Every single one of you.

And I’m sorry I couldn’t make you the post you deserve.

But I did my best.

And the post got written.

And that’s something.

No, it’s a lot.

But thank you all for being in my life and making it better even though I am terrible at keeping in touch with other people. You all matter to me and having, say, a second mom, doesn’t mean I don’t also have a first mom. and these are all just bad translations of family relationships. But the big thing: More family means more people I love, it doesn’t mean dividing people into greater and lesser parts of my family. And yeah I don’t get along with everyone, but that’s true of every kind of family I’ve ever heard of.

Thank you for being out there.

Thank you for being my family.

Sorry, again, that I haven’t been able to make you the post that you deserve. But I love you, both people I know and people I don’t. people I’m related to by “blood” and otherwise. And again the reason I don’t use the term chosen family is because I didn’t pick anyone out any more than my biological family picked me out. My non-biological family are no more chosen than my biological family, and chosen doesn’t make anyone better or worse than anyone else, or more or less close to me, or more or less loved.

Also I have both immediate and distant relatives, and living relatives and ancestors, within my non-biological family. Just as there are in my biological family.

So. All of you: Thank you. I love you.

Posted in Being human, family, friends, Monday / lundi / lunes / måndag / Monntag

I’ll never write this one if I try to explain it all either.

Understand guys — I wanted to make y’all a post. I know exactly how I want it organized. I know what I want to put in it. And the whole point is showing you I love you. But for whatever reason, I can’t write it as intended. It’s like walking through sludge until I’m surrounded by bramble and can’t find my way out in any direction. Then my head gets tangled up in everything else and I run off and don’t write.

The reason it was going to be so complicated was because I wanted to really pay tribute to each of the individual people in my life who currently count to me as family. This is difficult for many reasons. One reason is juggling privacy concerns — who to use names, who to use initials, what details to leave in, what details to leave out, what details to change. I’m not talking about legal limits on privacy, I’m talking about my attempts at common decency. Which are sometimes stricter.

So there’s a post I want to make, and I’m trying to make it. And I think I’m gonna succeed at making it, at this point. But this is the lead-in to it — that again, I’m having issues with trying to get everything said. So I’m trying again for allowing myself to write without writing as perfectly as I want to.

Because if I had my way?

I’d have a drawing for each and every one of you, or a photograph. And a little bit of commentary. And it’d all be done so that only some people were identifiable, and only in some ways, and so forth. And that’s just not how it’s gonna happen.

The most likely outcome is I’m gonna write a summary about my relationship to y’all and what it means to me, but without as much personalized touches as I would like. And then maybe the personal touches will trickle through to the light of day in the end when I’m done writing all this other stuff.

But for now? This is all I can promise. This post here. Because I already wrote it. But I am pretty sure I will be able to at least write a couple short posts. Where “short” doesn’t necessarily mean the post is short, it just means… something in my brain leading up to the post is shorter than it would’ve been otherwise.

This gets a little bit carried off into corners of my brain it’d never come back from — if I were to explain to you the communication and cognitive issues that I am having here? If I took more than just these couple sentences in this short paragraph, to describe it? I would never get the post written. So this paragraph has to be all, for now. Suffice to say temporal lobe epilepsy does not make for being an efficient writer.

Anyway I’m gonna go and try to write the best post I actually can write, as opposed to what I want to write, and that’s gonna have to be good enough.

Posted in family, medical

Thank you SO MUCH to my brother and my first mother. (Medical Monday)

For my birthday last August, I got one of these:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A blue GOMCO suction pump. There’s a lighted switch on the front, and also a separate light. the switch has three settings: Off, 90 mm Hg suction, and 120 mm Hg suction.

This is a GOMCO suction machine, designed for suctioning things out of your stomach. It has three settings, one off and two on. The two separate on settings are for two different levels of suction: 90 mm Hg and 120 mm Hg.

From that box where the pump lives and the on/off switch lives, a tube goes to a jar. The jar is glass and can be cleaned and sterilized easily. This is the jar:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A glass jar that says “Allied Healthcare Products, Inc.” sitting in a metal holder to stabilize it so it doesn’t fall over.

There’s another tube coming off of the jar. That tube connects to my G-tube.

What does all that mean?

Since my stomach is partially paralyzed, it doesn’t drain into my intestines properly. Some days it drains too slowly. Some days it doesn’t drain at all. All days this means that fluid builds up in my stomach and tries to travel up my esophagus. Then I am likely to aspirate that fluid. I don’t mean a little silent aspiration, although I get that too. I mean I wake up choking on bile, spend hours coughing it out, and end up with either aspiration pneumonia or aspiration pneumonitis as a result. My life was in danger and I got my feeding tubes partially to address this problem.

Unfortunately, while the feeding tubes helped the aspiration a lot1, the bipap made the aspiration worse. Anything that came up into my esophagus far enough, the bipap would blow straight down into my lungs. This is dangerous and has to be avoided at all costs. At one point they were even talking to me about a trach2. This happened every night that I used the bipap. Back to that later, it becomes important.

So the way the drainage system works, is I have a G-tube, a tube that goes into my stomach. It attaches to something with suction. The suction pulls the fluid out of my stomach, into some kind of storage device.

Until now, I was using one of two things that amounted to the same thing: A suction drainage bag, or a Jackson-Pratt drain. They’re both things that you squeeze. And then they slowly expand. And that produces suction. Which drains all the fluid out of my stomach. They’re built differently (one is an accordion attached to a bag and some tubing, the other is a bulb attached to some tubing) but they do roughly the same thing.

But the problem with both of those is you have to be awake to squeeze them.

So the moment they filled up, I’d aspirate, and all the stomach fluids would overflow out of the drainage system and all over me or my belongings. I put up with this, but I didn’t enjoy it, and I couldn’t use my bipap.

This GOMCO pump is amazing because.

It produces suction electronically. Constantly. You don’t have to keep hitting buttons or squeezing bulbs or accordions.

And it dumps into a giant container, compared to what i was draining into before.

So as long as the tubes stay connected there’s much less leakage.

And.

And.

And.

And.

And.

I’ve worn my bipap for 3 nights now, as well as part of the daytime (I have a very irregular sleep schedule without medication).

I have not aspirated once.

Not once.

This is me tonight:

Mel wearing a bipap with full face mask

You have no idea how grateful I am that this is even possible.

Thank you to everyone in my family who helped me get this vital medical equipment.

Being able to wear a bipap has saved my life more than once. The three most memorable times:

  • When I stopped breathing and landed in the ICU, they found other ways to keep me breathing and had my caregivers grab my bipap from home to use as a vent. They knew that its central apnea settings would make it detect absent or shallow breathing and provide the breaths for me, so they let it do that.
  • One time I went to an art gallery opening because I was one of the artists. Being around crowds of drunk people is stressful to me. They were all poking and touching me. Then when I got home, I got involved with a developmental disability self-advocacy event where we were put by the moderators into the position of having to justify our own existence. It was a debate where the other side literally wanted to make it legal for parents to kill children with developmental disabilities. Adults with developmental disabilities were pissed off about this and said so. It got heated, I was already stressed, and the effect on my adrenal insufficiency and myasthenia was muscle weakness (both conditions are made worse by severe stress) including some of the muscles involved in breathing. i had to wear the bipap to breathe deeply enough, for about a week. My pulmonologist said I did the right thing.
  • Just before I was diagnosed with adrenal insufficiency, it got severe enough that I stopped breathing entirely every night, for hours. This was due to severe weakness at the same time of day that you have the least cortisol in your body — around three to six in the morning. It wasn’t just my lungs, I couldn’t move any of my body. I’d wake up with my head flopped onto my chest and horrible pain shooting down my neck because I couldn’t lift my head and the muscles weren’t holding it up. Without the central apnea settings on the bipap I flat-out wouldn’t be here. There was nothing else that could’ve saved my life, because as hard as I tried, I couldn’t even push the wrist button I had to call for help.

Most people hate their bipaps. I love mine.

I love my bipap because it keeps me alive.

I think I am going to come to love my GOMCO drainage pump in the same way. It lets me use my bipap, which also keeps me alive. And the effects of untreated sleep apnea are so wide-ranging and severe I can’t even begin to cover them. I would take some aspiration risk over the risks of untreated sleep apnea. It was just that every night was too much risk.

But the untreated sleep apnea has been our biggest medical problem to solve, and if this keeps up the way it’s going, my doctor is going to be as thrilled as I am. It’s nice to have good medical news for a change. It’s too bad I had to do all the research and my family had to pay out of pocket for this, though.

And that’s a part of disability-related injustice I should talk about here:

We are not offered what we need.

I needed something like this years ago. Not only did nobody offer it, nobody even mentioned it existed. It was taken for granted that I just couldn’t wear my bipap anymore. My doctors didn’t have enough knowledge themselves to offer me the stomach drainage pump. This simply wasn’t offered even though it might save my life and I could’ve died in the meantime from aspiration or complications of untreated sleep apnea.

There’s something wrong with a medical system where this can happen. And does happen. All the time. Especially to disabled people.

Before this, I was literally thinking I’d need someone to sleep nearby me in order to squeeze any of the drainage devices I used up till now. Now I can just turn this thing on and as long as someone helps me dump it out and clean it (easier and safer than the drain bags and drain bulbs I used to use) I can do this.

I’ll still need the other drainage system for more portable purposes. Like I’ll still need drain bulbs when I go out of the house. (Or I can drain manually, but that carries its own risks.) But when i’m in one place, sitting there a long time, like when I sleep or an in bed for other reasons, then this drain machine is perfect.

Here’s a webpage that has the pump on it.

Official picture of the GOMCO suction stomach drainage pump with Allied Healthcare storage jar for fluids.

Also, this should tell you something: I got this in August and was only recently able to set it up and use it. We have been fielding so many minor and major crises medically, that we’ve had very little time and energy to spare. Not even on answering emails. I’m very sorry about this but right now we’re operating so close to capacity that it’s either hard or impossible for us to take on more a lot of the time.

But I’m really, massively excited about the combination of the pump and the bipap actually working. Most people hate their bipaps but I love mine and have been utterly frustrated by being unable to treat one of the most treatable conditions (sleep apnea) out there. I was starting to have all kinds of extra sleep problems including parasomnias, including confusional arousals3 that were terrifying both to experience and to witness.

But basically, if it took me this long to put together something this important to me, understand that my inability to get back to people isn’t because it’s not important to me. This is literally as important as breathing and I couldn’t get to it for months.


1 Yes, feeding tubes overall make aspiration worse. Please don’t “inform” me of this, it doesn’t apply to me. I’ll explain.

Aspiration is any time that you get things in your lungs that you shouldn’t, like food, water, fluid, etc. When you “swallow wrong” and choke food down the wrong hole, that’s a mild aspiration.

But aspiration comes in many kinds and severities. Most people are familiar with aspiration associated with difficulty swallowing (called dysphagia). Most of the time when people talk about using feeding tubes to avoid aspiration, and how it doesn’t work, they’re taking the overall statistics of everyone using feeding tubes, so most aspiration they talk about is from dysphagia.

I have some dysphagia. But most of my aspiration is from a combination of:

  • Gastroparesis: paralysis of the stomach
  • Gastroesophageal Reflux Disease (GERD): When stomach contents flow backwards into your esophagus.
  • Laryngopharyngeal Reflux: When things flow backwards even further up the esophagus into the throat and windpipe.

Meaning, it’s not coming from difficulty swallowing. it’s coming from fluids that are in my stomach. Some of those fluids are manufactured by my stomach. And then anything i swallow (and I try not to swallow anything other than spit, but sometimes in a moment of weakness I’ll eat or drink something). Anything that makes it to my stomach, just kind of sits there. And after it sits there for awhile, it builds up to a larger amount. And that larger amount is much more likely to travel up to my throat and down into my lungs.

I have mixed central and obstructive sleep apnea. I also have conditions that have required the central apnea settings on my bipap as a noninvasive ventilator. It is vitally important to my health that I wear a bipap. I have not been able to wear a bipap in years. Because as bad as the complications of sleep apnea? They’re nothing like as bad as the complications of a bipap blowing all your refluxed bile and stomach acid into your lungs every single night.

So what my G-tube (the feeding tube that goes to my stomach) does, is drains my stomach at the source. Anything in my stomach then goes into a drainage container of some kind, which must be emptied frequently. It has to be suction drainage, no other kind of drainage has worked for me at all. But it does work.

So my situation is not the situation of someone trying to use, say, a nasogastric tube, to avoid aspiration associated with difficulty swallowing. And our situations should not be considered the same statistically or otherwise. There are many kinds of feeding tube and many kinds of aspiration, and to understand whether a feeding tube will help your aspiration, whoever you are? You have to understand a lot about the reasons for the aspiration, the form the aspiration takes, the kinds of tubes available, and so forth.

A little knowledge is a dangerous thing.

And people who say that all uses of feeding tubes to fix aspiration are wrong, have a little knowledge.

Mind you, I don’t understand every part of this either. I’m not claiming medical expertise i don’t have. But I know enough to know why my aspiration and tube situation is different from using some other kind of tube (or any kind of tube) to treat dysphagia. I don’t know whether there are more effective ways to use feeding tubes against dysphagia and lss effective ways, or whether there’s no way. I just know that two tubes — G-tube to drain the stomach, J-tube to put food water and meds into the intestines — is pretty standard for gastroparesis and can when the conditions are right prevent aspiration. And of course this won’t be reflected in overall statistics on aspiration and feeding tubes, because most people who aspirate and have feeding tubes don’t have gastroparesis.


2 We decided against the trach for many reasons, but there was one big one. Apparently there’s a mechanism in a trach that keeps reflux from getting into your lungs. Apparently the amount of reflux I had meant that it would basically just go right through the mechanism and into my lungs and then I’d be aspirating anyway, plus dealing with all the risks that a trach involved. Even when I need a vent, which I sometimes do (not just for sleep apnea but also for congenital myasthenic syndrome, central apnea while awake, and a few other things including when my adrenal insufficiency makes my muscles weak during cortisol lows), my bipap works better anyway.


3 It’s where you wake up completely disoriented and often, for some reason, angry. I don’t remember what I’m like when this happens, but apparently I’m grouchy and rude most of the time. So I wake up to people who are already mad at me or scared of me and reacting to things I don’t remember doing but that certainly sound unpleasant. Or I wake up in the middle of shouting at someone. Whatever it is, I hope it goes away when the sleep apnea is better treated. It may not be as dangerous as breathing problems, but it’s scary.

Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Friends and Family Friday

friends and family Friday
friends and family Friday.

Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.

Posted in crossroads, death, Developmental disability, disability rights, family, history, Self-advocacy, Temporal Lobe Epilepsy

Crossroads #05 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

Your bone resonance exists unseen
By those who can only
Read the words
On gravestones
Without feeling
The bones underneath

The grave of my dad’s aunt Voicy — he was close to her, she was more like a sister in age (my dad was 1941-2014). May they both rest in peace, and her husband as well. The gravestone is in Rose Bud, White County, Arkansas.
My great-aunt Voicy.
(I think. I’m faceblind and
some memorial websites get her and her
mom confused. I honored both of them
in my name change.)

They would have it
That you were a crip
And only a crip
You almost believed them
And were probably afraid
To say what you may have suspected

But your bones know better
And so do I

Spoken from the bone,
Mel

Posted in Being human, family, food, friends, medical, people, tube feeding

My big dream in life.

I don’t think this life is going to happen.

But here would be my dream.

It’s very simple.

I’m 80 or 90 or something.

So’s Anne. I assume so is her SO. And my other roughly same-age friends (for some reason I don’t have many) like Joelle.

We get to hang out as old people and reminisce over a lifelong friendship.

That’s what I want.

I don’t expect it.

But it’d be massively cool.

Anne is kinda my cognitive doppelgänger. She’s the other human in this picture (her SO took it, so he’s kinda in the picture if you count behind the camera as in the picture):

Anne, me, and Igor. All with weirdly similar posture and facial expressions.

I want to be old and I want Anne to be old.

That’s what I want in life.

Full head of grey hair and a friend or two to use up all that time with. And as many cats as can safely work out for everyone.

As it is, I count every grey hair as an accomplishment. And right now I’m working on making it to 40, which I had a good chance of never seeing, so that’ll be an accomplishment too.

I don’t think it’s wrong to want this.

I do think it’s realistic to expect it’s unlikely. But there’s a chance. I’ve got some good longevity genes. They might make up for all the other crap. They sure have with my mom, who’s managed to survive a number of codes with some of the same conditions I have and is in her seventies. Her mom’s in her nineties.

Anne does longevity research for a living, and says I actually have longevity genes that are known about. I could’ve guessed it from the long lives of many of my relatives, but it’s reassuring. Some part of me wonders if the longevity genes are how we survive to adulthood at all with some of the medical crap running in our family.

But at any rate, that’s most of what I want out of life. No matter what my life looks like at that point — that’s part of the interest in life, is you can’t predict it. Right now my life is looking kind of sucky from the outside, but I value being alive just as much as ever, and I can’t stand the idea that being old or disabled is a ~fate worse than death~ and all that. Right now I’m living on a bed in someone’s living room and we’ve both been in the hole financially since the beginning of the month, and that’s just the start of a long description I won’t go into. Suffice to say that my sense of time makes managing finances without help about as possible as managing meds without help. We’re tightening our belts, but it’s hard.

But basically.

I just want to be around for life. I don’t need to be healthy, I don’t need to avoid dementia or anything like that, I just want to be there. I’ll have plenty of time for death when my time comes.

But I already feel lucky.

Because I’m here and I have had so many times I almost wasn’t.

I’m already older than I or medical professionals predicted.

Nobody — nobody — is guaranteed any time at all. We get what we get.

So every moment we’re alive is a chance to experience that life, to live, to love.

And every piece of us is gunning for us.

And then in the end we die and get to become part of other kinds of life, that wouldn’t be here if it weren’t for us. Just like the mushrooms and asparagus in the fridge — some of our last fresh veggies my roommate made into a delicious tube-soup for me — get to be part of me in a minute. They had their time to be part of a fungus and a plant respectively, and now they get to be part of a human being and the assorted things that live in and on the human being. I love the idea of being part of that whole chain of life.

But I still want to be here as long as I can.

And I do love that this is biologically a part of what life wants, so this isn’t just a directive from my brain, it’s a directive from every living part of my body. And I do feel like I have to take into account the opinions of things most people don’t think of as having opinions. I think of humans and other animals as basically very very very weirdly complicated and specialized fungus-like or slime-mold-like creatures living together and cooperating inside portable bodies, alongside assorted hangers-on and symbiotes.

Not exactly, but that’s as close as I can get with words, so take it or leave it. I think it’s cool. And given how much I rely on my entire body, I care quite a lot about my survival as an entire organism, not as a couple of thinky bits that like staring at themselves a lot. Don’t get me wrong, I like my thinky bits as well as the next animal, but they’re not all there is to me. And I think things with thinky bits do tend to get a little bit intellectually vain about the whole matter when it’s just the way our bodies grow.

So.

Grey hair. Friends. Cats. Longevity, or hell, even just slight old age. Want.

Posted in family

Uncle Lindy

Uncle Lindy standing behind Mel, who is sitting down with a cat on hir lap. Both are wearing collared shirts, suspenders, and flat-top hairdos, without intending to look the same that day. The cat is calico and wearing a Cone of Shame due to eye surgery. Uncle Lindy is wearing a blue shirt with green suspenders and has white hair. Mel is wearing a green shirt with black suspenders and has black hair. Both are wearing glasses.

This is my Uncle Lindy. Great-Uncle Lindy to be exact. He’s my mom’s mom’s brother. I just found this photo again so I thought I’d post it. My brothers and me always called him Uncle Lindy even though he was technically our great-uncle. Like many people in his family, he was long-lived.

He lived with my great-grandma until she died. She was in her nineties. I was about twelve. He took care of her so she could live in her own home.

Whenever people talk about respecting traditional family values, I think of that. In our family it is normal to move in with a disabled relative if they’re in danger of institutionalization. Some people in our family prefer to put relatives in nursing homes, but most don’t. Whatever else we all disagree on, most of us seem to agree that people belong at home and that we have some responsibility in making sure they can to the best of our ability.

I think about that a lot because that’s a value of both the family I was born into and the family I have acquired along the way. And Uncle Lindy showed it by what he did, not what he said. I never talked to him about it, I just saw how he treated his mom, and that’s how I learned you don’t put relatives in nursing homes. That’s a real traditional family value I can get behind, although I also think family members should have a lot more support than they usually do when they make decisions like that.

I want to tell you a bit about (Great) Uncle Lindy because he’s very important to me even though there are ways in which I barely knew the man.

Uncle Lindy rarely talked to me. I don’t actually remember having any conversations with him. They might have happened, but I don’t remember any conversations at all. I remember spending time around him, but I don’t remember either of us talking, and I don’t remember that being weird in any way.

Uncle Lindy lived with my great-grandma in a tiny house. Tinier than my apartment. There was a long thin kitchen that was a tight squeeze even for a child. Then one tiny bedroom and an equallly tiny front room that doubled as a living room and my great-grandma’s bedroom. I think it must’ve been a fold-out couch, but I remember a bed taking up most of the room and her lying in it most of the time as she got older. She had a voice almost too small to hear.

There were stories about Uncle Lindy’s generosity. He never bragged about it. You heard these things from other people. But things like, someone came to his door who didn’t have shoes, and by the time he left, Uncle Lindy had given him his shoes. He was the same way with animals — dogs and cats came to his door wanting food or needing medical attention, and he gave them both. If they stuck around, they became his pets. He wasn’t an animal hoarder — they were clean and he took proper care of them. He was just someone who loved animals and gave them everything he could. He also hiked fish into mountain lakes in his backpack.

Anyway most visits to Uncle Lindy were kind of like this picture. I really like this picture. So I’m gonna post it again.

Me and my Great-Uncle Lindy with one of his cats.

I would be sitting there interacting with some of the animals. And he would be there, or not be there, as the case may be. Sometimes he’d go off and take care of other things or talk to my parents. Sometimes he’d just quietly hang around me and the animals. I’m sure he must’ve talked to me about something at some point, but I don’t remember a single conversation. Conversations were certainly not the focus of our visits.

Glass knickknacks in the window at
Uncle Lindy’s house.

Also, it’s not quite as obvious in the photo as in real life, but behind me and Uncle Lindy, the windows are lined with glass shelves. And the shelves are lined with beautiful glass items that are great when the light shines through them. Little knickknacks basically. Vases and tiny sculptures and dishes.

Anyway, the light shines through all of those things, and it’s beautiful taken as a whole. He must have collected those.

Swedish decoration style involves a lot of ways to use light. There’s a lot of the year in Sweden where there’s not a lot of light at all. So Swedish house decoration often involves a lot of pale colors and other ways to make whatever light you’ve got count for a lot. I wouldn’t be surprised if Lindy’s beautiful knickknack collection, which captures the light coming in the window and makes the whole room sparkle with colors from the glass, has something to do with this. Swedes are often experts when it comes to making a little sunlight go a long way, and I wouldn’t be surprised if his mom took this expertise with her on the boat to America.

Also, we weren’t planning on dressing similar and having the same haircut that day, it just happened.

Calico cat wearing Cone of Shame
from recent eye surgery.

That was the last day I ever saw Uncle Lindy. I was in Oregon visiting my grandparents for the first time as an adult. I discovered that I liked Uncle Lindy a lot. So it wasn’t just bad discoveries on that trip, which is good because I’d also discovered the same day exactly how much I disliked my grandfather. But I discovered I liked Uncle Lindy just as much as I disliked my grandpa, so it evened out. (Both of them had to do with cats, too. My grandpa was proud of having hurt cats for fun. Lindy helped cats and never made a big deal about what he did. You can see one of the cats he helped in the photo, complete with Cone of Shame from recent eye surgery.)

Anyway, that’s my Uncle Lindy, and I miss him. He died shortly after one of the few relatives who does believe in nursing homes, had him put in one, away from his pets. After all Lindy did to keep his own mother out of one for decades (she ended up in one towards the very end, but he did his best), this seemed horribly unfair.

But what I remember the most about him is the way he cared about people, whether two-legged (human), four-legged (cats and dogs), or no-legged (fish). And he never talked about that, to my knowledge. He just did it. But what he did showed enough of his character, you didn’t have to talk to him to see it.

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 family, history, Okies

Atomic Vets Again

I’m late for Memorial Day, and I have no new posts on it planned to make, so this is it. But I made old posts. So for Veteran’s Day and Memorial Day, I always remember America’s atomic vets. I have at least one in my family — he died from the experimentation he was subjected to by the military — and until I heard his story, I’d heard of this kind of thing but had no idea my grandpa’s cousin was involved in what I’d thought of as just another part of history. And that’s the thing: History is made up of people. Every single one of us is history. That’s important. And it’s important that we understand where we and our families and friends are part of history.

US Army troops in Nevada, training for nuclear warfare.
These troops are about 6 miles
from Ground Zero. The Pixley Farm was about 120 miles away.

Ronald Baggs, My Life As a Ping-Pong Ball

My father wrote this in his memoirs about living in the San Joaquin Valley on a farm called Pixley Farm during that time period, which meant Nevada where the nuclear testing happened was right over the other side of the Sierras:

In the early 1950’s, everyone was afraid of the communists, Russia and China in particular. In 1949, the communists took control of China and Russia exploded its first atomic bomb. Russia was supplying arms, ammunition, aircraft and tanks to the North Koreans and China. China joined with the North Koreans to fight UN troops in October of 1950. The mood in the United States was one of near paranoia. It seemed that war with Russia was inevitable. The specter of WW3 loomed on the horizon. It was at this time that Senator Joseph McCarthy began his famous communist witch-hunt. He contended that there was “A Red under every Bed”. The United States engaged in extensive Atomic Bomb testing in Nevada. From our vantagepoint on the farm, the flashes of light from the tests lit up the sky behind the Sierra Nevada mountains. Following the flash of light by a couple of minutes, we were jarred by the shock wave. The roar of the blast came many minutes later. It was an eerie experience. On one occasion, just before sunrise, I was helping Dad set siphon pipes when we saw the flash. We hung on to the pickup until the shock wave arrived. When it hit, it was so strong that it sloshed water out of the irrigation ditch. On another occasion, I was knocked out of bed by a shock wave. Atomic bombs were fearsome things to a nine-year-old kid. (They are fearsome things to a 66-year-old.)

Ronald Baggs, My Life As a Ping-Pong Ball
The red marker that says E Terra Bella Ave shows roughly where Pixley Farm was located, where my dad could see the atomic testing over the mountains.

This is the part where my dad talks about meeting the atomic vet in my family, who eventually died as a result of the radiation:

One afternoon, I came home from school and there was a strange man in the living room talking to Dad and Mom. He was one of Dad’s cousins and was home on leave from the Army. I sat and listened with wide eyes as he described his participation in the atomic bomb tests in Nevada. He along with many other soldiers had sat in a trench one mile from ground zero. They had dark goggles and ear protection that was their only special equipment. The bomb sat on a tall tower. They were told not to look at the tower or to raise their heads above the edge of the trench. When the bomb went off, Dad’s cousin saw a blinding flash, and was thrown backwards against the trench wall. He said that the blast was deafening and that a sheet of hot sand whistled over his head. We talked for a while and then he left. I never saw him again. Six years later, in 1958, I heard that he had died of leukemia.

Ronald Baggs, My Life As a Ping-Pong Ball

I made a more detailed post on atomic vets awhile back, called America’s Atomic Veterans, if you want to read it.

I think it’s important to remember not only the soldiers who died in foreign countries, but also the soldiers who died right here in America. They died without volunteering to be experimented on by their own government. The government considered them expendable. Just human guinea pigs to see what the bomb would do to them. And while we’ve made progress, neither the living vets nor the people who died have been properly compensated for the mess created. This isn’t a partisan thing, and it’s not about whether you approve of the military or not, this is just messed up what happened to people.