stonebender: (Default)
For context:
Freeping the Hugo Awards

George R. R. Martin's View

David Gerrold's

And Connie Wills's response.


I hesitate to ask, but to my fannish friends who know about the puppy whoo-haw: Is there any useful or helpful actions I can take?
stonebender: (Default)
Take this list, remove a thing, sort it by how much you like the things, add a thing at the top, a thing in the middle, and a thing at the bottom (preserving the sortedness, pedants): This version is via [personal profile] wordweaverlynn.

(most liked)
My music
A slice of sourdough bread fresh from the oven
Handknit scarves
Porridge (if Cream of Wheat counts)
Going up into the mountains
Getting something in the mail that isn't bills
Tidying
Steam locomotives
Emptying the dishwasher
Wandering
Twitter
Thermal underwear
Firefox upgrades
Cleaning the refrigerator
Doing paperwork (like tax forms)
Getting a seat on the commuter train
Celery in a stir-fry
Getting up early
Eating paper
Uber
Undercooked Aubergine
Fear
(most disliked)
stonebender: (Default)
Sign up for programming before 1/28! Even if you'd rather watch a panel than participate, FOGcon needs your vote.
stonebender: (Default)
I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.
stonebender: (Default)
An update. Apparently the mother would only accept palliative care for her children because their disability would shorten their lives. I have the same disability and spent a lot of time thinking I wouldn't live very long. I'm 56, so how long does a life need to be to be worth living?
stonebender: (Default)
This article by Marilyn Golden gets to some of what I worry about when it comes to legalizing assisted suicide.

Opinion

Oct. 31st, 2014 12:58 pm
stonebender: (Default)
My thoughts on assisted suicide prompted by this article:

Assisted Suicide is More Dangerous...

I've been struggling with this issue for a long time now. I'm a person with a disability and I really do believe that terminally ill people should be able to decide when they want to end their lives. However, with all the talk about reducing medical costs and how much more expensive treatment is towards the end of life, there are huge financial incentives to "allow us to die with dignity". It wasn't that long ago that babies with Down's Syndrome were pushed to the back of hospital nurseries and "allowed" to die from neglect. "For their own good."

For a couple of years in college I worked as a crisis intervention counselor and I know from personal experience that many people who feel driven to suicide just need some time and perspective. This is not to diminish their pain and suffering, but I've talked to people who say they wish to kill themselves. I know, that if I could keep them on the phone long enough, they changed their minds. Sometimes suicide is not a desire to end their lives, but a desire to end their suffering with the only option they believe they have.

Too many people already think my life is a burden to me even though I love my life and the people in it. Too many people have said to me, "if I were you I would just check out." Personally I would be much more comfortable with the whole issue if I was sure that people with disabilities got the services and treatment they needed to live as full a life as possible. If that happened, then I would be more interested in talking about my "right to die."
stonebender: (Default)
It's official FOGhorn 1 went out. Check out the SF convention I'm chairing. I'd love to see everyone there.

FOGcon 5
stonebender: (pic#50771)
I like TV. I like most media, but TV is where I spend a lot of my time. I'm also a fan. Which for me means that I tend to notice tiny details. Things that most people don't give a damn about. I not only notice them but sometimes they are the reason I like or dislike a particular television show.


I especially like noticing details that feel like they are a special secret between me and the creator of whatever show I watch. Maybe a reference in one show to a previous show the creator worked on or another show an actor was in before. It feels like it's a special joke directed at me and anyone else who notices. Now some are clearly intentional and others aren't. Some are coincidences that are only funny to me. Knowing that the guy who did the voiceover for The Wonder Years was also in Breaking Away make me happy.

Some shows really play up some of this trivia knowing that fan boys like me eat it up. Castle does a lot of it. So did Buffy, The Vampire Slayer. Last night two shows gave me a bit of a chuckle. The season premiere of The Walking Dead had the appearance of an actor who played a character on an earlier episode of the show. The character ran into Rick and Carol while they were on a run. The character and his girlfriend were very friendly sweet people who clearly had only survived through unprecedented amounts of luck. The character had dislocated his shoulder and Carol reset it for him. Not long after the girlfriend was found dead, but the guy just disappeared. So anyway, he shows up in the episode and I think, "Hey, that's the guy with the dislocated shoulder!" I also realize that he is now playing the guy who will become The Penguin in the new Gotham television show.

I know this is unimportant, but I told you these were stupid details.

Now, this last one was clearly on purpose and is more generally fun and not so much a private joke for me. On the The Good Wife which usually plays against The Walking Dead. Last night's episode has Alicia guiltily fascinated with a TV show that is clearly a take off of Talking Dead the show that follows The Walking Dead and talks about that evening's TWD episode. Fun!
stonebender: (Default)
Aftermath (Invasion of the Dead, #1)Aftermath by Owen Baillie

My rating: 2 of 5 stars


This was a decent attempt at a zombie novel. I don't think I liked the different types of zombie introduced by Mr. Baillie. Unless the different types becomes a bigger deal in future installments, they didn't seem to effect the plot much except that every now and then a zombie got identified as a type 1 or 2 or whatever.

It also seemed strange how much time went into resolving old relationships while zombies were doing their best to make a snack out of them.

I'll try the next book in the series.



View all my reviews
stonebender: (Default)
I can't really talk about most of what is bothering me, but every time I start feeling like maybe I have a better handle on things in life. Life makes it absolutely clear I'm not even in the right league. This may be the last time I do many things. Not worth the emotional trauma.
stonebender: (Default)
My partners and I have talked about this type of thing for a long time. I couldn't see enough of how the controls worked to know whether it will really be useful to me, but I Really Want This!
stonebender: (Default)
[personal profile] [personal profile] jesse_the_k has given me the letter F.

Something I hate: fear

Something I love: film

Somewhere I have been: Freemont

Somewhere I would like to go: France

Someone I know: Fabian Franchi

Best movie: Fight Club

If you comment asking for a letter, I will provide!
stonebender: (Default)
Posting for my own benefit, a dream I had yesterday. Carol and I are watching a video on television. The music playing is Alex Clare's song "To Close". But it didn't have Alex in the video. I seem to have matched up the music with perhaps a Timberlake video but no Justin either. The video was black and white and had a man in a sleeveless tuxedo and no shirt underneath. So you see the man's arms and some of his chest. The man was heavily tattooed, but tattooed in an old-fashioned way. I think of the tattoos being sailor type tattoos. Anchors and hearts and the massive ships on the ocean. The tattoos are fuzzy and badly drawn.

So I start criticizing the tattoos and as I badmouth them Carol says to me, "Well you're one to talk, yours are exactly alike." With that I look down at myself and I do have tattoos almost exactly like the guy in the video. I look up to Carol and say: "Well, you're right, but I wear my tattoos ironically."
stonebender: (Default)
Last weekend I attended another FOGcon 4 committee meeting. Things seem to be chugging along. Eli Bishop is contributing his talents towards our program book cover this year. We got our first chance to look at it Saturday. It's beautiful take a look,
here.
stonebender: (Default)
Does everyone knows I'm Chairing FOGcon 4 this year. We just reached a big milestone. Program sign-ups are live! Remember, the convention is coming soon we only have about eight weeks till March 7. You have until February 21 to buy a membership online. After that you must buy your membership at the door. Once you by your membership you can go through the programming sign-up. You can tell is what program you'd be interested in participating in or just let us know what programming looks good to you. I hope to see at least some of you in Walnut Creek this March.
stonebender: (Default)
I've been having a rough time lately, but managed to get out of my house yesterday to see my therapist (the first time in weeks and weeks). I've been feeling a little weak, so instead of schlepping from Telegraph all the way to Tuk-Tuk Thai Cafe on Shattuck (as is our custom). I decided to try this new place on Telegraph near my therapist Rangoon Superstars. [personal profile] loracs and I over ordered as we tend to do at a new restaurant.

We both just loved the place. I can't remember what soup we had, but it had like a potato dumpling in it. On the spicy side for me, but I'm a wimp and I still liked it. We had salt and pepper calamari which was amazingly tender. [personal profile] loracs loved the jalapenos that went with it. I was able to eat around the jalapenos and enjoyed the appetizer quite a bit. I had some garlic noodles with duck. She had a shrimp dish. I discovered a new favorite drink: Burmese Milk Tea.

I was happy to run into [personal profile] serene as she walked home from work. Lots of vegetarian options probably several vegan ones as well.
stonebender: (Default)
It wasn't a surprise, but I'm still oddly sad that this morning I found this in my inbox. For those who missed it, read this for some backround.
stonebender: (Default)
Last night, almost 24 hours ago I passed out. [personal profile] loracs and I were coming back from a movie after having eaten Thanksgiving dinner. I had some gastric distress and felt pretty tired. So I asked [personal profile] loracs to put me to bed. I went to the bathroom, but still wasn't feeling so good. I had her put me to bed and roll me on my side half way onto my stomach. So I could try to squeeze out the Hindenburg of gas still in my intestines.

My head was on a pillow and my nose was a little stuffed, but I felt fine. She put the blanket on me to keep me warm and the sheet fell over my face. I knew it was there but it didn't seem to obstruct my breathing and I only planned to be laying on my side for a few minutes. I thought about asking her to remove the sheet, but I honestly felt fine about leaving it there.

[personal profile] loracs went to the study to give me some privacy, and I got to work. After a while, I started having trouble getting my breath. I wasn't scared, it wasn't a big deal. It was just uncomfortable. So I called [personal profile] loracs. No answer. I called louder and still no answer. I kept calling trying to get louder, but I started feeling like I couldn't breathe at all.

I tried to calm down. I tried to concentrate on breathing, but I didn't feel like I was getting much oxygen. Pippin, my dog, jumped on the bed and did what she usually does which is go get [personal profile] loracs. At least I think she went to [personal profile] loracs. I did hear her bark, but Pippin has been barking more lately because we are doing some home remodeling and she doesn't enjoy all the changes. I tried one more time to call [personal profile] loracs and still couldn't call out loud enough. Things started getting blurry and darker. I felt my throat completely close up. The last thing I remember thinking was: What a stupid way to die...

The next thing I knew, there were three big burly guys in my bedroom asking me questions. "Do you know who the president is?"

"Obama?" I answered.

"How old are you?"

"55"

"What year is it?"

I turned to [personal profile] loracs because the answer wouldn't come immediately. She shrugged waiting for my answer and then it came to me. "2013"

The answers seemed to satisfy them. I noticed every breath I took improved my mental state. Turns out they checked my O2 and it was at 92%. 95 to 100 is what I've been told is normal. I already felt like my O2 level was going up. After my bout with pneumonia years ago, I have some experience with these things. The paramedics wanted me to go to the hospital. They checked my heart and it seemed to be functioning normally. I tried to tell them that, because of my disability, I was unable to move my head when my airway got obstructed. I think they thought there was some other cause but I was pretty sure there wasn't.

So I'm fine now, but it was scary. [personal profile] loracs said when she came to check on me I was blue and unresponsive. She dialed 911 and tried to get me to react. She was just getting ready to try what she remembered of CPR when my eyes opened and I seemed to start breathing. I don't remember any of this. I really only came to after the paramedics got here.

I'll call my regular doctor after the holidays just to double check, but I'm feeling physically normal and only periodically freaked out for a minute or two.

[personal profile] loracs is blaming herself and I feel like if she is at fault, I'm at least 50% at fault as well. I thought about telling her to move the sheet, but it really didn't feel like it was obstructing my breathing, until it started obstructing my breathing. It was an accident. A scary accident. I'm certainly glad she was here to revive me.
stonebender: (Default)
My morning attendant gave her two week notice Tuesday. I haven't had to look for new workers much in my life. I tend to hang on to the ones I hire and often before they leave my employment they have another family member or friend who wants the job. To me this is nice for stability sake, but he does make me feel like whatever abilities I need to interview and higher a new worker atrophy before I need to use them. So here I am in the unusual position of needing to higher a new person. In the old days there used to be an informal network of people with disabilities who knew who was looking for work or needed more hours etc. etc. Read more... )

Profile

stonebender: (Default)
stonebender

April 2015

S M T W T F S
   1234
567891011
12131415 161718
19202122232425
2627282930  

Important (to me) Links

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags