X marks the Day!

It's here at last, Xmas Day! The most X-citing day of the year. Yes, there are the gifts and the relatives, and the contemplation of all I didn't get done (stack of cards addressed but never sent, as usual? Check!) But the really thrilling part is what comes next: Putting it all away!

Wheeeeeeeeeeeee!

Oh, you think I'm joking, don't you? Well, you are so wrong. See, I grew up with a tradition that the house must be clean come January 1st. Tree and decorations taken down, things replaced by new gifts packed and taken to the thrift store or tossed if too ratty, the general mess of the holidays cleaned up and the household ready to start in on the new year's troubles with as few of the old year's as possible. And I only have 5 days to do it in! And on the sixth day, I make a nice simple dinner of corn bread, greens, and black-eyed peas. And that is my favorite holiday dinner of all. 

I finished all the wrapping and deciding who gets what on Christmas Eve (except for my daughter and son-in-law, I can't generally remember what I got for who), and started the process of putting all the papers and tissues and bows away, and attacked the Room of Doom where such things as gifts waiting for wrapping and projects hoping to be completed lie in wait, strewn on every flat surface, and on some surfaces which are not quite flat but allow for artful balancing. The Room of Doom is much less doomful now, having transferred the doom to my knees and feet since I foolishly did my sorting without wearing shoes. Which means without orthotics. Which means I will be paying for my oversight for quite a while.   But no rest for my weary soles! There is more cleaning to be done in the early morning before the day's festivities begin. And then there is breakfast to cook.

Just knowing that the new year is coming, I am feeling much perkier. I might even get some cards in the mail.

Open Letter to Obama

President-Elect Obama,

I was among the millions stirred by your victory speech the night of November 4, heartened by your call for the contributions of every American, including the "disabled and the not disabled." I was so excited that I immediately blogged about it.

Since then, I've been thinking about your invitation. It wasn't specific, which is entirely appropriate since you have no way of knowing what each individual may be able to bring to the table. What can I do, what special insight might I have? More generally, what can disabled people offer a country that often thinks of disabled folks as nothing more than an unfortunate expense? Now, since your bizarre and inappropriate selection of Rick Warren to give the prayer at your inauguration, I have a better idea of what we can bring: a sense of what inclusion actually means.

I have been disappointed in the Democratic Party for several years now. Back in 2004, at my county convention, I put forth a proposal to support the strengthening of the Americans with Disabilities Act in the wake of the Supreme Courts undermining of that important civil rights legislation. All the time, I hear "oh, no one is against the disabled." Well, you'd have had a hard time proving it that day, as person after person, with increasing vehemenence denounced any such bill. And what justification did they give? To a person, they each stated that they were against "special rights."

"Special rights." What are special rights? Apparently, (here I'm judging from the comments made by fellow Democrats) the right to a fair chance at employment, the right to housing, the right to visit the homes of friends, the right to access public buildings and businesses. There is a further context, the right to the body, the right to sexuality, the right to marry. The tradition of denying people with disability reproductive rights is not just a sorry history painfully recorded as a warning to the present. Instead, it is an ever-present reality. As the Ashley X case made clear, public support for even the violation of body integrity is widespread, with sexuality being considered a burden for the disabled rather than a natural function. While law has changed to permit marriages for people with intellectual disabilities, social sentiment has little budged, and practice continues to deny people with disabilities full rights to control over personal sexuality.

What other group in the United States currently faces similar restrictions against their sexuality, their employment, their right to housing? Who else is told that access to the same rights as everyone is "special rights"? That would be everyone considered homosexual, the group you have chosen to single out as expendable in your choice of Rick Warren to offer an inaugural prayer. Rick Warren, who actively campaigned for California's Prop. 8, and who embraces only "ex-gays." This is a wholly unnecessary slap in the face to gays, lesbians, bisexuals and transgendered people. And it is an insult to those of us who are straight and count among our friends and family non-heterosexuals. We have seen their pain, their isolation, their hardship, and see how the inherent difficulties of being a member of a minority group are magnified by legal discrimination. Rick Warren wants to continue to make life as difficult as possible for non-straight people, justifying his discrimination with "love the sinner, hate the sin," and calling for non-straight people to change rather than society to change. This is as preposterous a stand as demanding that people with disabilities stop being disabled before being included in society. And, yes, people do make that argument,that people with disabilities aren't being excluded, that it is the disability at fault rather than society, and once we get "cured," we'll be welcome. Such an invitation to fellowship rings hollow whomever you are.

You can't distance yourself from Warren's small minded hatred. You didn't need to have a prayer offered at all, and as a supporter of the separation of church and state, I'd argue that you shouldn't be having one at an official government event. But you obviously want to make some kind of public statement, to present a particular type of image, by having a prayer said for you. And thus, your choice of Rick Warren has indeed made a statement. It is a statement that your support for civil rights for disenfranchised minorities doesn't run any deeper than campaign rhetoric. 

Your public distancing of yourself from gay and lesbian supporters isn't the only rejection going on right now, either. In the name of "security," the inaugural welcome of those of us with disabilities has also been rescinded. No chairs at the parade route, insist security officials. What about walkers, canes, wheelchairs? The latest I read is that security is still "thinking" about that. Thinking about it? Thinking about clearly violating the ADA? Sadly, it won't be the first time, since "homeland security" has been allowed to trump civil rights at every turn.

So, I am telling you now, as a person with disabilities, that what you need to do, what you need to make uppermost in your priorities as president, is embrace full civil rights for us all, not just those who already hold positions of power and privilege in our nation. You remember us, right? If you don't, then all your beautiful words about hope and change are meaningless. Full civil rights undergirds everything we in the disability community have been campaigning for. To live in communities, in our own homes, rather than warehoused in nursing homes and institutions. To be employed based on what we can do, rather than idled based on fears of what we can't do. To have mature sexual relationships, to have children or not depending on our own decisions, to have the right to adopt, to marry and form families. These are not "special rights" of only privileged groups. These are among the rights of all Americans. 

Help some cat in Japan

Via Elizabeth, I learned of the Japan Cat Project, a trap/spay/return program to reduce the feral cat population. You'd think the land of Hello! Kitty wouldn't have any unwanted cats, but you'd be wrong. If you find you are short of a gift for a cat-lover, why not make a donation in their name? I'm sure they'd rather have that than whatever it is you were going to pick up at Walgreen's. Face it, you don't even know what you were going to get them at Walgreen's.

No "good death"

I have been absolutely sickened by the news coming out of Britain. It's just horrible. My daughter and I have started avoiding British news and programming because of the euthanasia drive. I know we shouldn't, that we should actively confront this monster on the global scale, but there is so much bigotry, so little understanding of disability--where to start? How to get it through people's heads? It's a kind of terrorism directed at the disabled, I think. More of us have been openly identifying as disabled who in the past would have denied it and tried to hide it. We've experienced relief in doing so, and found solidarity with our brothers and sisters who are unable to disguise their differences at all. And here the bullying able-bodied world wants to shame everyone again, to clear their days of any interaction with openly disabled people. It will be those with learning disabilities and neurological problems and bad joints pretending that they don't need any accomodations, so they can keep their jobs. It will be those in wheelchairs, in braces, those who are deaf or blind, cloistered behind drawn curtains so no one has to have visual reminder of disability. And those already largely housebound pressured to submit to the ultimate exclusion, euthanasia. And once it is a common place to kill those who require nursing care, the next level of social "burden" will be targeted. None of us are safe in a culture where the answer to weakness is death.

Pro-euthanasia advocates insist that they would never pressure anyone into committing suicide. But they lie. Their language, as William Peace shows,  reveals how they routinely devalue and disparage the lives of people with disabilities.  Daniel James's parents are excellent examples, saying that their paralyzed son, along with disabled people in general, are "second class citizens." Since when is the solution to a problem of second class citizenship euthanasia? I'll tell you when! The Indian Wars! Oh, those poor Indians, losing their land and culture. Let's kill them off toot-sweet and put them out of our misery. It's a veritable final solution to the issue, one might say as one goose-stepped along. 

Euthanasia advocates also purposely muddy the waters, appealing to people's wish to resolve the suffering of loved ones who are truly dying in distress in order to get assisted suicide legalized. Thus British television viewers were given the opportunity to witness a disabled man said to be at the end of his life kill himself at a Swiss clinic while talk still swirls about Daniel James, who was not terminal. Disability does not mean dying, but if the euthanasia advocates get their way, it will soon.

&*$%#!!

Damn. It's cold. I know, I know. It gets cold every winter. But every winter, I take the dip in temperature as a personal affront. People, it sleeted on me on the way home last night. I had to stand outside in the sleet and hail when I got home, covering the plants as best I could, hoping that they don't all just shrivel up and die.  Poor, poor plants. I'm a bad plant mommy.

And, apparently, my cover is completely blown. I blame the norther. Its howling winds and freezing temperatures, combined with Hell Week at work, seem to have left me actually looking as bad as I feel. OK, maybe it was the cervical collar. Or the knee brace. Or me having to take a lie-down on the back office floor because back went out. Or the ashen look on my face ams I fought down nausea and headache most of the evening. Maybe the boss is right and I am falling more often.

If only I could get someone to reduce my left shoulder before my left hand gets anymore numb. But, sad. I'd usually ask my housemate but he's actually sick right now, and I'm completely what passes for healthy in my gene pool. And in many ways, I feel better tonight than I have in several days. I don't know if this is because the front is actually here now instead of coming in, or if I'm feeling some low-grade giddiness antecedant to headache. I guess I'll find out soon enough.

Just another boring week

I know, I know. You are wondering what I've been doing all week. Well, it's just been so exciting.

Monday: Fell down in front of people at work.

Tuesday: Fell down in front of people at work.

Wednesday: Avoided falling down. Started wheezing.

Thursday: Cedar (mountain juniper) season began in earnest. I took an Allegra at noon. My nose kept running. I took Sudafed. My nose kept running. Except for when it was sneezing. I work with the public, mind you. I called the doctor's office to beg an appointment. How about Monday? Ha! I'd be lucky to last so long. OK, squeeze in for Friday morning? Perfect.

I get home at 9:30 PM, my nose still running. I took Claritin. Yes, I know I'm not supposed to layer antihistimines, but I do, because antihistimines are easy to get but steroids always require a prescription.

Friday: I'm so tired, between the allergies and antihistimines that I can hardly stand. I get to the doctor's. I wasn't trying to go for the death warmed over look, but I suppose the chest rattle makes it convincing. Steroids! Fresh new inhaler and sinus spray, ridiculously expensive but I no longer have to contemplate telling my supervisor that I will be taking sick leave during our most hectic time of the semester.

Saturday: Now it's just the regular pain of my left leg feeling like it is rotting and my hands being stood on by elephants. And the falling in public.

.............................................................

Heroes

s

p

o

i

l

e

r

C.P.? They have got to be kidding. She was so disabled by C.P. that she could not walk, but she somehow managed to build a scare crow in the corn field and make regular visits to talk to it? That's one unusually accessible corn field. And how's she fitting back into her braces? Last I knew, metal doesn't have particularly elastic qualities. I know, I'm just nitpicking on an issue that most viewers won't catch at all, but still, sheesh.

It does look like Daphne's belief that Arthur Petrelli had given her her powers was just a lie he had told her to control her. Maybe she and her dad are both particularly gullible, and she never had C.P. but rather one of hundreds of other possible mobility conditions that her lazy-ass small town doctor couldn't be bothered to read up on. OK, that's my fanwank, and I'm sticking to it.

Heroes, disabled

S * P * O * I * L * E * R * S



Hey, I'm going to talk about the show. I will reveal things that happened. If you haven't watched it, but plan to, and just hate having the plot revealed, Go back! Go back! Captain Kirk, go baaaaaaaaaaaaaaack.



Last Warning!



I got caught up on my favorite TV show, Heroes, yesterday. The Eclipse, Part I is something of a study on disabilty attitudes. Everyone lost their powers and suddenly became disabled, merely normal after they had gotten used to being supernormal. Each character reacted differently to their loss, with their reactions in keeping with their personality and values.

To some of the characters, the loss of powers is a relief, even though it brings them great pain. For the super-healer, Clair, the pain is what she cherishes most, since she had lost the ability to feel it. Even though she is shot in a botched kidnapping attempt, and can't immediately heal like she usually would, she is happy that she now has confirmation that she is human after all. Series all-purpose bad guy Sylar is also content with his loss of ability, focussing on his release from the constant hunger and discontent his super-comprehension had put him through. In comparison to what he was, he now has a cognitive disability, and he couldn't be more pleased. And Mohinder, who had mutated himself in the service of mad science, is thrilled to no longer be turning into an insect...at least until the heavies come around and threaten to beat him to a pulp.

Some of the characters are irritated with their loss and resistant to adapting. Nathan Petrelli, at the beginning of the episode, was chiding his younger brother, Peter, who had lost powers to their father earlier in the season, for being resentful over his relatively disabled state. Then he also loses his powers and begins lashing out at Peter for suggesting that they take his inability to fly into account in their travel plans, and his stubborness leads them both to a deadend. Psychic Matt Parkman, who had nearly given up on finding happiness when his superpower first began to manifest, again nearly gives up on finding happiness--this time with the excuse that he can't do anything to win his intended without his ability.

The most pathetic character, though, is the one whose loss of super-speed renders her disabled by TAB standards. Daphne is ridiculous. Tim Kring, why did you pull out the self-pitying disabled person stereotype? All this time, we were led to believe that Daphne was in thrall to the evil Papa Petrelli because of some super terrible feature of her pre-super life. And now we find out that the terrible thing is that she has leg braces and forearm crutches? And to avoid having her powers stripped by Papa Petrelli was willing to betray everyone she loved and act contrary to her own moral code? What kind of a person would rather be someone else's puppet than be unable to walk? This is a completely unbelievable personality flaw, and a libel against people with disabilities. If you had other characters who were traditionally disabled without their powers, then it would be OK to show one of them as being a self-hating cripple. But you don't. You are using one character to stand in for an entire class of people. You may as well kill off the black cast members on a regular basis. Oh, wait. You do that, don't you. Maybe you all need to think a little harder about your positions of privilege?   

The one character that I think best reflects the disability reality is Hiro. He refused to allow Parkman to feel sorry for himself, insisting that a real hero wouldn't need special powers but would find a way to save the day. He is confident that everything will be fine, that they must simply have a plan. Yes, right now, he has the mind of a child and is looking to get his own power back. But it is his basic personality that is leading him, and that views regaining both his adult mind and powers as simply a means to an end. And if he can't be a hero with his abilities restored, he will still be a hero. He's already saved Parkman's romance.

(Hiro is actually reminding me a bit of my mom right now. She has messed her leg up but good. Again. Maybe permanently this time. And she is irritated about not being able to do what she usually does, but chalks up her inconvenience to not having what she needs for the circumstances: a wheelchair, someone to walk her dog, handrails. She has a plan. She's going to get those things, and everything will be fine.)

Rudolph, redux

Way back in December of aught-six, I considered that perennial classic, Rudolph, the Red Nosed Raindeer from a disability standpoint. And now, in November 2008, Ces Marciuliano sends up the cantankerous, small-minded Santa of that stop-motion favorite.

Santa in 4 panels
To Donner: "Hey, if I didn't build Dasher an office ramp after the bus accident I'm sure not gonna put your handicapped son on my team, Donner..."­
To unseen elves: "'We are Santa's Elves'...Well, maybe next time, invest in an electric pump before committing musical abortion."­
At dinner, talking about the Misfit Toys: "They're misfits!!! I can't deliver misfits! Even blind kids would know they got fucked."
Angry, to unseen Momma Claus: "Do you think I wanted to hit you, Momma?! Do you?!"
Final caption: The not-so-endearing Santa of "Rudolph."

On Beth's meditation: Falling

Beth uses her seizures and falling as a metaphor for the difficulties that people face, and enjoins her friends to see people's falls (in the sense of adverse circumstances) as an opportunity to be the hero we imagined ourselves as children.

I fall quite often. It comes free with the bad hips, bad knees, bad ankles and bad feet. What I have learned is there is no point to fighting it. When I feel me going down, I bring me down instead of trying to stay upright. People often think I just suddenly decided to sit. Indeed, I did. I decided that suddenly sitting would be better than suddenly slamming into the floor. Gravity is a harsh mistress.

It's peculiar who will stop to help and who will make it a point to not see that any help is needed. Some people are terrified to acknowledge that others are having difficulties, even small ones. To notice the needs of others would force them to have to consider helping. To refuse to help would make them Bad People. But to offer help would undermine their autonomous self-image, since in the act of rendering real assistance, the helper and the person being helped become one in their goal. And some people fear being helped for exactly that reason, that loss of the illusion of independence. I mean, it is an illusion. We are all interdependent, we truly cannot live without each other.

Walking!

I took a walk today. The wind was blowing hard, much harder than I would usually dare to walk in. But I learned from my TRF experience that I can walk almost as well as I used to if I use two canes, so I decided to try it out. And it worked great! I went almost the equivalent of three city blocks in a wind that would normally have knocked me down. Now I think I will try to do this every day, or nearly every day. Maybe I can develop a bit of muscle tone; that would be refreshingly different.

In other news, if making a recipe, make sure to know what country the recipe came from. Oh, yeah. England. Explains why these cheese biscuits are flat as cookies. They are cookies.

R!M goes to TRF

Pictures, at last! None of me or my daughter (I'm not photogenic and she is skittish about having her picture taken in the first place). But a renaissance festival is always filled with hams ready to cut it up for the camera. Especially if you hand them a prop.

First off is Lewis, of the Other Brothers Juggling Show, seen here about to take a bite out of Raaaaahr. They are always on our "must-see" list. 

And from the other side of the festival grounds, it's Shelby of Sound and Fury. R!M is very impressed with Shelby's facial imitation, perfectly capturing R!M's permanent expression of horror and bewilderment. 

Next we have a frightening encounter with the Bilge Pumps, as "Harvey the Corpsman" goes Lewis one better, actually biting into R!M's felty arm. See, there are reasons R!M never changes expressions. When you are a six inch monster, the world is full of danger, including ravenous pirates. Oh, if you are looking for pirate music for your next Talk Like a Pirate Day party, their inaptly named Greatest Hits v. VIII is probably the best buy for your boullion. R!M wants them to sell lots of music, so they can buy food and not be so hungry for monster flesh in the future.

At last, life is looking better for R!M. From Valentine's Academy of Arts and Armour. It's a bloodthirsty show, but not for monster flesh.

Here's one of the lady supporters of the program making bosum buddies with R!M.

Even the violent Hard John Thomas takes a shine to R!M.

By this point, R!M was getting a bit worn from the handling, so took a good long nap in my bag whilst I enjoyed the melodious bagpiping of Tartanic. And some other things about Tartanic.

Nothing about us without us

Courtesy of Frida, I learn of We Can Do's campaign to get people with disabilities to write the Obama disability policy team to take advantage of this historic opportunity to have our voices heard and have a part in the change to come:

But we cannot afford to allow the moment to end here. Whether we supported Obama, McCain, or another candidate, we all know there is far too much work ahead before we can say, “Yes, we have made real change for people with disabilities.”

It is time for people with disabilities, our loved ones, our neighbors, and colleagues to join together, across ideological divides, to reach out to Obama. We should all send an email to Kareem Dale, Obama’s National Disability Vote Director (at kdale@barackobama.com), WITH COPIES TO Anne Hayes, a volunteer on the Obama Disability Policy Committee (at ahayesku@hotmail.com).

Girl, with legs

For your viewing pleasure, a lovely cartoon of a young woman with prosthetic legs. And, also, a cat swishing a prosthetic tail. Click on the picture or click right here to go to the artist's site.

Huzzah!

This past weekend I went to Texas Ren Fest, camping Friday and Saturday nights. I'd show you pictures, but I think Carapace has the camera. OK, so I'll show you pictures later. I know what you are really wondering is, "how'd it go what with walking around the festival?"

Pretty damn good.

I took two canes, a knee brace and, of course, my orthotics. The combination kept me steady and took the weight off my legs and feet that usually has me done in after a couple of hours. I was exhausted and dehydrated and hurting at the end of Saturday, but a night's rest and plenty of water had me feeling much better Sunday.

Funniest line I heard at TRF this time was from a toddler who observed me and then told her daddy with great excitement, "She has two sticks!" Heh, someone is learning to count. I am glad to have been of service. Second funniest line was from a patron, in mock horror, on her way to the exit. "Someone stole all my money!" It's a fact that money seems to disappear unaccountably at ren fairs. Apparently many people were losing all their money this past weekend. I made a point of asking vendors how their sales were, and each one I asked told me the same thing, that this weekend people seemed happier, more willing to part with their money, than the week before. Almost like some major event had happened that left consumers feeling a bit more confident. I don't know about other business people, but the TRF vendors seem quite pleased with Obama right now.

I didn't buy a whole lot, being mostly kitted out already, but I did get a nice rucksack with a dragon design while I was there, relieving me of having to manage a shoulder-carried bag while using canes. And I got a few odds and ends. There was some beautiful artwork for sale that I would love to have if I had the room. But I don't. Anybody wants a bronze water fountain in the shape of a dragon or a green man, I know just the guy.

Other good things that made the weekend pleasant:

new Coleman propane stove with instant lighting. It was nearly as easy as using the kitchen stove.

new tent with 7' height and enough space for two twin air mattresses. Sadly, one air mattress wasn't worth the attempt to inflate it, but the good one left Carapace sleeping comfortably, as did her tall-sized sleeping bag.

my adjustable portable table! It's not just good for sewing; it also fits nicely into the back of my car and is light enough that even I don't struggle with it.

taking Monday off for recovery. I had a whole day to put things away, wash clothes, and sleep after I got back. And so I went back to work Tuesday happy and feeling good.

Next year:

Don't bring lounger. It never got used.

Remember jacket. Sure, I can just wear all my garb, but it would still have been nice if I remembered to bring a jacket.

inflammation advantage

On the bright side, I'm the only person in the office today not freezing.

Disability denial

Drake, at Cloud Viper, talks about the trouble he has accepting that the body he has always known is a body with disability. One Sick Mother makes a really valid point (in the comments) about you not having had time to adjust after so many years of being encouraged to be in denial. Now you don't need to be in denial anymore; you can take care of yourself and learn to live in the body you have instead of the body that nondisabled people expect you to have. But all those years of denial are going to be a while in the getting rid of.

And even then, there will be times that you think to yourself, "Oh, I'm just a whiner. I'm not really disabled." I do the same thing myself. And then I get out of bed, like I did yesterday, putting my foot down to stand up, and I scream. And all day, people ask me what I did to cause my foot injury. And they look at me as if it isn't the most everyday thing in the world to injure yourself by standing up. And today? Foot is pretty much back where it is supposed to be.

Now, why, when you and I and OSM are so regulary reminded by our own bodies of just how unreliable they are, do we ever have a problem accepting that we are disabled? What difference does a diagnosis make? Nothing at all has changed in the way your body works since you got diagnosed. If a new doctor disputes the diagnosis, again, nothing changes. What's going on that we, and others around us, are resistant to the bleeding obvious?

I think there are at least a couple of factors. A very important one has to do with that damnable stick figure sitting on a half circle. Yes, that faceless, degendered symbol of disability the world over. Ever notice how s/he is always in the same condition, day after day, year after year? S/he never shows up for work with a foot working that didn't work yesterday, or eyes not working that worked only last week. And everyone knows immediately on looking that Handy Stickperson is Special. And, also, Handicapable. Good old Handy is completely healthy, just missing a part or two, or maybe with a nice injury that can be conveniently covered up under clothing. Handy plays wheelchair rugby or runs track. Handy does not need to spend weekends in bed, shaking from pain and in pain from the shaking.

You and me, buddy? We just need to snap out of it. Get with the program. See a shrink for Munchausens. Get right with God. Take a supplement. Stop being weak. But we aren't disabled, right? Because everyone's seen disability. And it is painted blue and uses a ramp and doesn't have people challenging its right to park in the disability spot. After all, those spots have the portrait of their owner, and we don't look like that.

People are always so helpful, screaming at us that there was nothing wrong with us other than being lazy, or stupid, or whatever the adjective of the day was. See how not-disabled we are when so many fine folks have taken it on themselves to call us fakers and complainers? And we agreed, didn't we? We accepted that we must be normal, since that seemed to be the most prevalent opinion. And then some doctor comes along and tells us that our normal isn't. So, who you gonna believe? Some doctor, or your third grade physical ed teacher?

President-elect Obama!

I am so happy. At last, I can once again hear a politcal speech without screaming. It's like Obama has reset the bar for public speaking. McCain's concession speech was good and unifying. And Obama's victory speech was fantastic!

And he gave us a shout out! In our language! In his speech importuning Americans to continue to work together to turn this nation around, he specifically mentioned those of us with disabilities:

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

Now, that may be a small thing, but when was the last time we were called to serve? Or included as part of the key to victory? When was the last time we were seen as part of the solution instead of a problem to solve?

Good start, Obama. Good start.

New Doctor visit

When I moved in March, I kept right on seeing my old doctor, despite him now being 15 miles in the wrong direction. But now he's closing his practice in the area, and I figure if I am going to get used to someone new, it should be someone I don't have to schedule an extra hour of travel time to see.

The new doc is a friend of the old one, so I am hoping he will have some person skills in common, since I like the old one. The new patient visit was yesterday. Summary:

Office is cramped. I don't know how they get people in wheelchairs or scooters to the back. Maybe they move furniture. The scale is inconveniently right in front of the doorway to the hall. Speaking of which, I've lost 10 pounds since this summer. I've also lost .75 of an inch since the last time I was measured, way back in my twenties.

Dr. M. is nice. He listened to me describe my current condition and past things that I thought he should know about that weren't asked on the new patient form. He said that the scar on my nose from the basal cell surgery was well done and acted like he could hardly see it, which either means he is extremely polite or in need of glasses.

He also prescribed blood pressure medication for me upon the one reading, and directed me to buy a blood pressure cuff. It seems a bit much to me to prescribe blood pressure medication off a reading at a new patient visit, but maybe there is something else he noticed or something in his notes from my previous doctor. We'll see. He will find I am a reluctant meds user, so he'd better keep the number of prescriptions low. Already, I misplaced the bottle and had to go on a safari to find it, and I hadn't even taken any yet.

I told him that my cholesterol was high the last time it was measured, but that I didn't want statins because of the associated muscle weakness, and that I couldn't afford any more muscle weakness than what I have. He promptly tested my muscle strength, which revealed itself to pretty much not exist. Ah, the old "squeeze my fingers" trick. Try to break them off, he said. Bwa-ha-ha! Hey, I'm just happy that I can complete a grip. Then he tested my arms and legs, with similarly sad results. Unless he can pull a magic potion out of his bag that will instruct my muscles to actually build, there is not going to be any useful change. (I can see it in his eyes, the question forming for next time. Would physical therapy help? No. No, it won't. But it will be exhausting and painful. Thank you.)

And he renewed my pain pill script, which is good, because we are coming to the time at work where we are standing most of the day. Except when we are bending.

And he wants me to keep a migraine diary, because he thinks maybe I should be taking a preventative. Oh, this will be hard, remembering to keep it. And knowing what to say.

OK, so I begin with that today. Woke up. Left side of head, behind and to the side of eye, hurts. Treatment: Ignore it. Breakfast: cup of coffee with cream, gluten-free waffle with butter. Head still hurts.

Oh, one more thing. I bought that blood pressure cuff right after the visit, since I needed to go to the pharmacy anyways. Checked blood pressure last night at the close of work. Also checked my vegetarian boss's. We have the same blood pressure.

A new book to find and read

Well, begin reading, anyway. All around me are books that I have begun, yet not finished. Is it my fault I forget where I have put them and then have to start over?

At any rate, author Gary Presley has asked me to spread the word, so I am doing so. From his email request:

Seven Wheelchairs: A Life beyond Polio was recently released by The University of Iowa Press.

The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable."

Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling account," and "powerful and poetic."

I hope you can mention Seven Wheelchairs on your blog. We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.

Of course, the book is also available through Amazon and Barnes & Noble.

--
Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press

Looks intriguing. Carapace, want to get me another book to attempt to finish?

Everyone else, got any ideas for helping me get all the way through something before misplacing it and starting something else? I've read more halves of books than anyone I know.

Assistance requested

I need help! I've begun a filk, but only have the chorus and one verse down. Now, to the tune of the Eagles' "You Can't Hide Your Lying Eyes," please join me in writing

You Can't Drive with Migraine Eyes

(chorus)
You can’t drive with migraine eyes
Because the lights
Are way too bright
Thought by now
You’d realize
There ain’t no way to drive with migraine eyes

(1st verse)
Silly you forgot to bring your Zomig
Had to make do with coffee and Naproxen
Another drive
It’s going to be a long one
You squint at the road while your head begins to scream

Please add to the desecration of this classic rock ballad by contributing in the comments.

Better living through cheap accessories

I bought a $25 folding table with adjustable legs a few weeks ago, thinking I would use it as Thanksgiving loomed. Then I thought, oh, why not use it now? Why not use it to do some sewing since it will be several more weeks to months before I actually get the designated sewing room cleaned up enough to do any sewing there.

And so I used it Sunday, and it was great. With the legs as short as they will go, the table is perfect to sit at while in my favorite comfy chair, and gives me lot of space for what I'm working on. And it's very sturdy. I wish I had got a table like this before. But I have one now! And that's what matters. Yay! Mending got done! Real projects now stand a chance of being completed! Excitement!

And I really like sewing in the front room. So I might just keep doing that, and just organize the spare room for optimal storage. That would be a good thing, too.

Not accessible

What, you are asking yourself, is that picture? Why, that's the door to the "accessible" women's restroom at the Travis County Expo Center. The other restroom, in the other building we went to, had a large garbage can holding the door open, making it impossible for anyone in a wheelchair to get by. This one, as you can tell, is impossible to open if you use a wheelchair. And once in, while the wheelchair user stall was large enough, the door swung inward, making it difficult to impossible for someone in a manual wheelchair to shut or open the door on her own. But I guess they figured that no one in a manual wheelchair would be there without an assistant, seeing as how every single entry door had a threshold so steep that it required both being pulled in backwards while a third person held the door to get in or out. And then there were the vendor booths and exhibit sites, in the stock barn, placed so that there was a drop off the pavement into sand at each one.

There is a reason why the Texas Civil Rights Project is suing the Expo Center for failure to be accessible despite their recent multimillion dollar face lift. Go get 'em, tigers!

(While the site itself has led Carapace and me to decide we will never again go to an event held there, the Expo staff themselves are decent people working in an impossible place. Thanks, especially to Isaiah. We couldn't have even got away from the car if it wasn't for him going out of his way to fix Carapace's chair.)

Minor league griping

This past week has been rather uneventful, other than the usual slings and arrows. Which have annoyed me more than they normally do, merely because I had been having a good run of it over the summer. While I enjoyed having several weeks without daily pain, it has a negative in that, with the return of the distinct feeling that my joints are shredding and liquifying, I am irritated unreasonably. It isn't like I didn't know that my respite was temporary, and I know it seems petty to be grumpy over having the daily pain again when so many never get a break from it ever. 

Still.... Poop. I would like to be able to go to TRF without my knees and hips driving me to the point of tears. How to manage it? My ideas from the summer seem so paltry now.  Will two walking sticks work? When I tried it out Saturday, when my kneecaps were trying very hard to take up residence on the backside of my legs, it seemed futile. Should I get a new rollator? I hate taking a rollator to TRF, but what else can I do to take the weight off my legs? Scooter? Hated that, too, at TRF. Things that work well on pavement don't work so well on hard-packed, sometimes muddy, dirt. And then there is getting about in the shops to consider. You think your local mall is inaccessible? Look upon the ren fest and note how the lack of shop accessibility is the one area in which there seems to be no anachronism. And my very favorite show is always at the least accessible stage.  What do people have against ramps? Grumble, grumble.

It's still not enough for me to not go. Or to not camp. I am looking forward to it. But I also want to have the best experience possible, so if anyone else has ideas, please pass them on.

Oh, also. You know what I hate that isn't usually painful? Waking up to the sudden sound of a joint going "pah!" And those few moments when I wonder, "OK, so can I still move?" It's especially unnerving when the joint in question is a couple of vertebrae. Anyone else have this, or is it just me?

OK, I'm done with my whining. Anyone else want to grump about relatively minor things? The comments are open. Oh, don't tell me how good I've got it or offer (yecch) sympathy. Whine, dammit! Whine! Or tell me your hints for ambulating at Big Events.

About me....

I left a comment over at Do not read this blog, and Blane asked me a question:

yanub, you seem to have developed a very balanced and healthy perspective on these things. I don't know anything about you--but is there anything you'd be willing to share about your life or background that would illuminate us regarding your outlook? I agreed with your comment about comfort, but still, don't you ever have just a small bit of sadness when you think about your consciousness ceasing to exist?

Do I have any sadness over my consciousness ceasing to exist? No, not really. I regret that, when I do die, there will be people who will be sad because I won't be around. At the same time, it would be even sadder if no one missed me. I fret more at the prospective loss of those I love than over my own prospective death, and want to stay alive because I know others feel the same way about me.

I've lived through a long period of depression, which is behind me now. What got me through my own lack of desire for life was knowing that I was loved, even if I couldn't fully feel it, knowing that my death would affect others and hurt them. And I've never wanted anyone to hurt because of me. But when I am dead? I will be as aware as I was before I ever came into existence. I figure, if I don't mind the previous non-existence, I have nothing to fear from that non-existence to come, either. I really only regret my decades of depression. I wish I could have somehow stopped that sooner, because that is a sort of existence without existence. But a disease must run its course, and there is no fault in being sick. And no turning back time, either.

So, now I am well into middle age, with a body that creaks and gives out like I am well into old age. And while I feel free to grumble when I hurt or have to bypass doing something I would have liked to do because I can't get cooperation from all the important bits and pieces, I also don't really care. I don't care if people stare when I limp. I don't care if they think bad thoughts when I use a handicapped spot and seem to walk pretty good at the moment. I don't care if they keep asking what happened to my neck. Or if they ask about my finger splints. I have no problem saying "no" if asked to do things that I simply can't do. I have nothing to prove, no one to impress, and wouldn't try to prove anything or impress anyone if I did. 

I owe a great deal of how I feel about things now to Carapace, who talked me through my depression and my outrageous anxiety attacks, and who still impresses me with her (un)natural good humor. Oh, yeah, she's my daughter, but I've always admired her as a person. Wearing her reverse headgear to fifth grade with such confidence and hope for improvement that all teasing bounced off her and shriveled away. Her indignation over the school's treatment of a mentally ill classmate while brushing aside her own treatment by the school while she was using a wheelchair. Her intense excitement over her crafting and art despite the high cost she bears with the associated migraines and seizures during a creative burst.

And then there's Elizabeth, about whom I've recently posted. How can I help but want to be a better friend and neighbor when Elizabeth is such a great one across so many miles? Or my friend Sheila, who is always concerned about my welfare even when she is most despondent? Or my religious parents, who were once disfellowshipped for actually caring about people instead of just trying to "save" them? Or my atheist boss who everyday exemplifies gratitude and the sort of humility that comes from really believing in equality? My grandmother who traded pies for tamales, who insisted on being known by her first name by her neighbors because she was her own person, not her husband's.  My grandpa, who completely agreed.  I could go on and on. But the point is, all these people have had and continue to have an enormous affect on me. When I lose one of them to death, they will still be alive--in me. And if I go first, I will be alive in them. We are all shaping lives yet to come, people who will never know our names. Our personalities and goals, our hopes and dreams, everything that is essentially what we think of as our consciousness, we get that from other people, from people who are around us now, and from the people in the past who passed on their hopes and dreams. When I die, then, my awareness of consciousness will stop, but what is essential about it--that belongs to the living, and always will for as long as it is worth passing on.

I was raised Christian, and taught to expect, at anytime, the end of the world and a final judgment that would leave the majority of people ever born in eternal torment. Compared to such a horrible thing, death, plain and simple, is a small thing, and the ability to participate in making the present and maybe the future more pleasant for everyone is a large and wonderful thing. 

Blane, I hope all that sort of addresses your curiosity.  

Hooray for the open road!

I was able to park in my own driveway tonight, much to my relief. And we got an unexpected benefit from the road work. The speed bumps are now wider, which means that getting to my place at the end of the street, past 3 speed bumps will no longer be so jolting to my spine. Or injurious to my car's suspension. So, that's good. 

Still, here's hoping it will be at least a year before they resurface my neighborhood's streets again.

In other news, the ankle is getting better. It stayed in place most of today. If I baby it this weekend, maybe it will forget its wild ways and stay where it is loved and appreciated come Monday. As an incentive to good behavior, I ordered new orthotics since the old ones have lost most of their spring. 

It figures

So, today they closed down my street to do road work. Meaning that I can't park near my place. And, of course, this morning, my left ankle went out on me. The ankle has since been joined by a metatarsal. Now, this may not sound like much to you, but if it doesn't, it's only because you aren't the one trying to walk with a foot that feels like a large shard of glass has taken up residence in it. Parking on the next street over is hellish. I am not happy about having to cross through dark yards from the next street over to get to my street. No consideration for accessibility was made at all. This doesn't have to be done this way. Half a street at a time could be done. The way it is being done is just stupid.

Confidence

My neck was squeaking like mice in an old sofa. And it had been doing this since I had awoken in the morning, with no sign that it was going to simply click into place like I had been hoping. So, out came the cervical collar. I slapped it on over my hair, little caring how it looked. I could fix my hair later. Besides, it isn't like no one isn't going to notice it no matter what. Eventually, people get used to seeing me with bits of gear, depending on the trouble of the day.

A lovely young woman came in to the office a moment later, asking for her paperwork. But she didn't have her official identification. She'd been in before, and we'd let it slide once but couldn't again. She really didn't want to have a picture made, not like she is right now. "How much longer with the eye patch?" "At least two more months. Do I really need to get it made now?"

I was trying to think if I dared assume the authority to grant another extension. "Oh," she asked, "are you alright? What happened?" "Huh? Oh, yeah. Nothing happened. Sometimes I have to wear this. It's how I am. It's OK. ....Your ID, you know, you really need it."

She smiled. "It's fine. I'll get it."

Support EFM!

Why should you help Elizabeth McClung? If you follow her blog, you know that she is a good friend, a generous person, and way, way too self-deprecating to have accepted help before now. Her wife Linda can tell you what they need help with specifically. Linda has finally gotten a Paypal button working at her brand new blog, A Girl's Gotta Fly, because so many of us have begged to be able to help.

Let me tell you how Elizabeth came into my life. She's the one who took the initiative, browsing blogs during a night of insomnia. She found mine, and posted a comment about pain and dislocation. I'm a chronic insomniac so I responded right off, and then went to look at her blog. And I posted. And she responded! She responds to everyone! She's great that way! To Elizabeth, everyone is important, and everyday is a day to be grabbed and lived. And she is astonishingly honest about the reality of life with a rapidly progressive disability.

I said she was generous, didn't I? There's no need to take my word for it. When she and Linda went to Japan, they took all Beth's readers along, too. Tell me, if your health was steadily deteriorating and you had the chance to go on the vacation of a life time while you still had life, would you bring along a motley assortment of people you've never seen? But Beth did, posting wonderful photographs and in-depth coverage of her Big Adventure every single day, no matter how badly she was feeling at the end of a day of sightseeing. While there, she made a point of buying postcards to send to all of us who had asked for one, and she mailed them off steadily while she was still there! And since then, she has continued the fabulous Postcard Project. If you haven't gotten a personalized postcard from Elizabeth, it's only because it's either in the mail right now or you haven't asked.

Probably, if you are reading this, you are already a friend of Elizabeth, and I am telling you nothing new. But I wanted to post about her again anyway, and the advent of the Paypal donation button seems like as good an excuse as any.

Blue Tag

For months, Carapace and I told ourselves we'd be sure to bring the camera to take a picture of this parking space sign.  Today, at last, we did.  Underneath the traditional blue handicapped parking sign is another sign, in red and white:  "If you don't have a handicapped sign, and if you are planning to park in this space, the owners of this property will place on your bumper the following sticker:  I (heart) parking in handicapped spaces and I don't care."

I suppose it would be better if the owners would simply call the police to have the vehicle ticketed, but maybe some people are motivated more by the threat of a public shaming than by a fine.  In any case, I've never seen the two spots with these signs being abused by non-placard holders.

Obama!

In case anyone is waiting to decide who to vote for until I officially announce my support:

Obama!

Check out Obama's disability issues platform!  

And if you are in Texas, vote for Noriega for Senator.  We can do without Big Bad John, who has chiefly contributed to the state image through his hilarious comedy video and concerns for box turtles.

How wheat causes dislocations

It began innocently enough. I saw the fried catfish on the menu and, hopeful, asked the waitress how it was prepared. "Oh," she gushed, "it's coated in corn meal. "Just cornmeal?  I wanted to make sure. "Yep. I've worked here nine years, I know all about how everything is cooked."

By midnight, I knew wasn't as familiar with the kitchen as she thought she was. The evidence? The sores that were developing in my mouth. Sores that make their painful appearance when I've been eating something with wheat in it.  Damn. Damn damn. I took a benedryl, washed my mouth out with antiseptic mouthwash and went to bed.

When I woke up, I instantly wished to stay home.  Some mule driver had come into my room during the night and had their jackass kick me square in the face.  I felt horrible. The sores were hot little wounds. And my sinuses were swollen--another effect of the wheat, combined with the ragweed in the air. I ate some plain yogurt, making sure to get it all over my gums. I took another benedryl. I sat down in despair. Damn that mule. I should take something for the pain. Naproxen? Who was I kidding? I already had sores in my mouth and probably my entire gut. Maybe Darvocet would help.  

I went to work, hoping the Darvocet would kick in. Or the benedryl. Or that my face would explode and kill me. Really, any change would have been welcome.  After a couple of hours, the sinus swelling from the allergies started to go down, though the pain was still relentlessly hanging on. Another couple of dispiriting hours went by. Suddenly---Pop!  My jaw went into place and the pain began to dissipate.  

Wow, my mouth sores had been annoying me so much I hadn't even noticed that I had dislocated my jaw. Too bad, because I could have fixed that right off.  So that's why I felt like I had been kicked in the face. I must have been grinding my teeth in discomfort during the night. I'll try to avoid a repeat of this experience, and take the pain killer before going to bed tonight. Because those mouth sores? Still there. I'm sticking with the grilled catfish from now on.

Another recipe

On a high fat diet because you've cut all the carbs out and have to have something to burn?  Or simply want to make a nice treat but you don't have the energy/skill/accessible kitchen to do anything interesting?  How about making a cream soda?

Cream Soda

• sparkling/seltzer water
• flavored syrup (sugar free if you are avoiding carbs)
• whipping cream
• ice

There are no particular amounts to use, because measuring takes the surprise out of life.  Experiment with what seems good to you.

Pour syrup (this is the sort of syrup used for coffee drinks) and cream into a glass filled with ice.  Pour sparkling water over it.  Mix with an ice tea spoon.

Be careful!  As with ice cream floats, this treat can rise well above the edge of the glass, so you can't see where the liquid starts and the foam begins.  Taste your drink and decide if you need more of anything.

Heh.

Darn liberal elitists.

Texas Sunshower

White light streams through shining clouds onto pastures below.  

(Yes, I took this picture!  It's mine, all mine!   If you want to use it, be courteous and link back here. )

Recipes sweep the disability web!

As often is the case, Dave started it.  Then Frida jumped in.  And since my non-broccoli eating housemate asked me to buy broccoli again, I suppose I should add my secret recipe for getting crucifers into vegetable haters.  And it is gluten-free!

• two heads of broccoli
• onion to taste (dried or fresh chopped)
• water to cover
• one can of broth 
• one stick of butter
• 1-2 cup/s shredded cheese 
• 2 medium eggs
• 1-3 cups liquid (water/milk/cream/broth)
• black pepper
• salt

There's a right way to do this, and the way that I do it.  I'll tell you my way.  

Wash the broccoli and break it up.  It doesn't need to be chopped, because you are going to cook it down until it breaks apart.  Put the broccoli and the onion into a large enough sauce pan, cover with water, and set to boil.  Pay attention or you will burn the broccoli, and that is something you definitely don't want to do.  Add more water if needed.  You will boil until so soft you can break it apart with a spoon.  (Checking to see what I left out, and it's this:  Break up the broccoli!) Turn the heat down to a low simmer.

Add the broth and the stick of butter.  When the butter has melted, add the cheese (I use Muenster, because that's what's been cheap around here).  Stir.

While the cheese is melting into the broccoli, break two eggs into one cup of the remaining liquid.  Whisk it really well.  Now turn off the heat from the pan, and slowly pour the egg solution into the soup, stirring vigorously the whole time.  Stir, stir, stir.  If you don't stir with spirit, your eggs will end up scrambling instead of thickening.  Also, now is when you are breaking your broccoli into tiny bits.  Stir, stir, stir!

Now, add the rest of the liquid, as much or as little as you please.  Taste.  Add salt and pepper as needed.  Taste again.  Get bowl for yourself.  Eat it.  Then dish yourself some more and give the rest to everyone else.  

***************

OK, who's next?  If you also publish a recipe, tell me in my comments.

I hate allergies

"Atopy" comes from an ancient Greek term meaning "out of place."  How appropriate.

Yesterday, I got nothing done.   And it's all because of allergies.  I hate allergies.  Of all the things that my body does to make my life more, er, interesting, allergies are the worst.  I started having slight asthma symptoms at the beginning of the week, but since I was having a fairly laidback week it wasn't anything I couldn't ignore.  And then yesterday, the mucous membranes got into the act.  In a bid to stop the constant flow and sneezing, I was taking antihistimines every two hours.  Everything I took was supposed to work a minimum of four hours, and some for twelve.  But faced with my immune system's insistence on working overtime, Claritin, Drixoral, Zyrtec, and Benedryl merely tuck tail and run.  So, in exchange for minimal relief from the incapacitating symptoms, I got the side effects of lethargy and heaviness and mind-racing panic from the antihistimines.  It's always a toss-up as to which is worse.

I had decided I'd go to the clinic today for steroids if I wasn't better, but fortunately the big storm we had seems to have given me a reprieve.   I'm grateful, because I could see I was headed fast to a full-fledged general atopic collapse.   

Vacation success!

We're back, poorer in pocket but richer in memory and know-how! I appreciated the good wishes sent me prior to taking off for vacation, and especially appreciate Elizabeth's ideas about making things safe as well as fun. I did take that to heart and found us a beach with lifeguards and lots of other people around, in case of trouble.

Also, we ended up not camping. The more I thought about it, the less I wanted to expose Carapace to even one day of unremitting sun, seeing as she is photosensitive. As luck would have it, I stumbled across a funky beach cottage establishment that still had an efficiency for rent at astonishingly affordable rates. So we stayed there both nights, enabling us to go to the actual beach twice on Thursday, and then swim in a pool after the sun set.  It was really quite an old cottage, but all the same it was almost accessible.  If they would just ramp the entrances (which all had high anti-flooding thresholds) anyone could get in.  The door to the bathroom was already plenty wide.  A sliding bench and some hand rails would have made the shower and toilet available to anyone.   But I can tell from the rates they were charging that there are no major renovations planned for these 80 year old cottages any time soon.  I'm frankly astounded that the upkeep is as good as it is in such old cottages.  I'd stay there again, but if I needed a wheelchair....well, that poses a whole set of problems for a community built on sand.

Here's what I did that made our vacation about as safe as it could get for us:

• life jackets--Carapace didn't want to wear one, but I did, and it helped me a lot. Last time I went to the coast, the waves battered me pretty badly and I was so exhausted that I couldn't enjoy it. This time, the life jacket did the work for me so that I didn't have to try to fight to both keep my head up and keep my limbs from being jerked out of place by the waves.
• Dark goggles--they kept both the bright light reflecting off the waves as well as the waves themselves from stinging our eyes. I have a particularly badly shaped forehead for keeping liquids out of my eyes, so not having to deal with that nuisance was great. My goggles, unfortunately, did tend to create a vacuum around my eyes that I had to keep breaking to keep being able to see. But it was a fair trade off. Just, next time, I will try on the goggles before buying them.
• Rash suits--I wore both a sleeved top and long pants, and C wore a sleeved top over her swim suit. This kept us from burning, and also offered some protection in case of jelly fish. Weirdly, we saw no jellies or portuguese man-o-war the entire time, but experience has taught us that there is no swifter end to a beach vacation, so it was good to be prepared.
• Morning and evening at the beach, afternoon in the air conditioning.  Avoiding the hottest, sunniest part of the day also was a big factor in keeping us from becoming toast.
• Cheap canes--this was the result of an unexpected find at the island grocery store.  They had wooden canes for $1 each.  We each got one, and so were able to do some beach combing without worrying about messing up our good canes.
• Cervical collars have more than one use!  This was also an unexpected "find." I use a cervical collar because my neck tends to go out of place on an annoyingly frequent basis.  But I didn't need to use it at night during vacation.  At least, I didn't need to use it on my neck.  Instead, I wrapped it just above my left knee to keep my leg bent like I need it at night, instead of using the towels I had brought.  It worked much better, since it didn't fall off when I moved or need to be readjusted.  Now I know that when I replace this cervical collar, I can continue to get use out of it. 
• Not overdoing it--this was maybe the most important thing.  We made sure to get plenty of rest and never spent more than an hour doing any particular activity.  Sure, there was a lot more we could have done if we had been go-go-go the whole time.  But this vacation was about relaxing, enjoying different surroundings without demands, and being ready to go back home where work and chores await feeling refreshed mentally.
• Coming home with enough time to recuperate--who doesn't need a vacation from vacation?  We went during the week so that I could have the weekend to do laundry, buy groceries, and rest my weary bones.  And rest I have.

I also put to test something else I had been considering, that anyone who hates re-packing might do.  I bought a couple of disposable roasting pans, a disposable grill top (such as is supposed to be used on a regular grill), and instant-light charcoal.  I punched some holes in one of the pans, and bent both pans so that the inner hole-y one was up a little higher than the outer one.  I put in the charcoal, bent the grill around the pans, and lit the coals.  Soon, I had our hotdogs ready to eat.  All I had to do after that was pour water on the pans and throw them away.  Nothing dirty to pack back up!  Yay!  If I was at a park instead of the beach, I would want to put the pans on a couple of bricks or something, because they get very hot.  But for the beach, this was perfect.

Oh, and I made sun tea by using the car windshield and the foil-covered window sunvisor as a lazy woman's solar cooker.  I put water and 8 tea bags in a large sports bottle full of water, and set the bottle between the windshield and the sunvisor.  It made for a strong tea ready to be diluted in my half-gallon pitcher, in just 90 minutes.

Another important thing I learned is that I can really book with two canes.  Next big adventure will be TRF, and I will have two hiking sticks with straps on me, even if they aren't period authentic for Tudor England.  Maybe this time I will be able to avoid the pure agony that comes from dragging one leg around all day.

Okay, okay.  I know, this is educational and all, but did I have fun?  Yes!  I had some very nice food at Moby Dick's and Virginia's on the Bay, where each place went out of their way to make sure C's and my diet were accomodated.  We successfully beachcombed!  We played in the ocean, bobbing over the waves.  A big pelican flew right over my head, close enough to make out the breast feathers even with my goggles on!  And a school of fish moved in on us, very nearly slapping C upside the head as they lept out of the water.  One of them swam right under my foot as I moved to stand in the chest deep waves.  It's a strange feeling to stand on a fish!  We had a long and fun conversation with the evening barista at Sips.  We fed the seagulls at the park.

Was there anything bad?  Well, I did have a terrible cramp in my right calf that still hurts two days later, and that tried real hard to cramp up my thigh, too.  But that could have happened at home just as easily.  And my neck went pretty badly out of place on the drive home.  But again, that sort of thing happens all the time, so it's no reason to not have a vacation.  Besides, that's why I carry a cervical collar everywhere, so it isn't like I wasn't prepared.  And C ended the trip with a migraine.  But again, that was likely to happen anyway.  Because we both anticipated having our usual gamut of problems, we were able to have a good time while also taking care of ourselves.

Not NICE

I just returned from my very lovely vacation, and am catching up on my favorite blogs. And what do I find at Junkfood Science, but a review of Social Value Judgements, a report put out by Great Britain's National Institute for Health and Clinical Excellence for the purpose of shaping its National Health Service's policies and budgeting. Sandy Szwarc rightly declares this document dangerous:

The entire world should care about what this disturbing document forewarns. It is the most palpable document in recent history to bring the same bioethical dilemmas, on the moral claim of personhood and quality of life versus the interests of the state, that were raised in the 1920s.

Szwarc ends with a warning that this devaluing of individual personal judgment regarding one's quality of life is

the inevitable outgrowth of what happens, as history has taught, when health becomes public. When health is a measure of good citizenship. This is the foreseeable results when government foots the bill for healthcare: the state then assumes power to decide what happens to an individual’s body and to determine when a life is of insufficient quality or too costly to society to preserve.

I think that blaming government-run health systems is too limited a view. As we've seen in the US with insurance companies, the corporate board can be just as coldly utilitarian as any government bureaucracy, and will just as readily adopt bioethical reasoning in pursuit of limiting expenditures. The real caution is for us all, no matter what system is in place in our particular nations, to value human life so much that we refuse to allow the machinery of governments and corporations to treat any of us as no more than replacable cogs.

Words Hit Like a Fist bmp

I took the liberty of turning Active Gray Matter's pdf of Dave Hinsburger's Words Hit Like a Fist card into BMPs, for anyone who wants to embed them in their own blog. Sue at Active Gray Matter has also arranged to give away 10,000 of these cards to activists and advocates! So what are you waiting for? Go there now and ask for your cards!

Labels

Via Andrea's Buzzing About:

Only words

Sunday, I listened to the neighborhood children playing, reminiscing about when I was so young and playing was serious work. In particular, I heard two boys talking.

"I never knew that! I am stupid!" He spit out that last word with venom.

I was shocked. How often had that child been called stupid that he so quickly offered it as an explanation?

His friend's voice was soothing. "You know it now."

"I am stoooooooopid!"

Now the friend was astonished. "You are stupid?"

"Oh, I am soooo stupid!"

"I am stupid all the time," the friend countered. "Stupid, stupid, stupid."

"Stupo"

"Stupiddy"

For five minutes, they went on changing the word in singsong voices, two sweet little boys who were spending their time playing peacefully and teaching each other. But you know what neither of them did, not even once? Call the other one "stupid". Instead, the slightly older boy went out of his way to make his friend feel better about his initial ignorance, and made himself his buddy's equal in all ways. Together, they reclaimed the word "stupid," taking away the sting until it was nothing, until the venom was gone and they could no longer even remember the judgment they were mocking.

It reminded me of another time, back when I was a teenager. At the local swimming pool, a little boy told me it was dangerous for him to go out of the shallow end since he was still learning to swim. I told him he was smart. His face broke out in an enormous grin and he rushed off. Five minutes later, he was tapping on my elbow with a burning question. "I'm smart?" "Yes, you are," I reassured him. He took a breath in excitedly, like he had just been given a new bicycle, and again rushed off.

I thought then, as I thought now, what are the adults in these children's lives teaching with their words? Why would a child be convinced he was stupid? Why would a child be surprised to be considered smart?

I need hints and encouragement

This coming week, Carapace and I are going to go where gimps and spazzes aren't supposed to go. Yes, we are going to the beach. The plan is to camp one night, and then spend the next night in a motel so we can go home without carrying sand in our intimate regions. The motel bit I'm not worried about, as long as the room is reachable without stairs. Nor am I worried about the camping bit. Car camping is completely within my capabilities and skill set, and it won't be like we'll be away from civilization.

No, what worries me is the actual beach. I so want to be there, feeling the salt water bounce me around. But I do worry. I can't exactly swim worth crap anymore, with my shoulders always ready to slip right out of place and the one leg's tendency to float in a direction different than the rest of me is going. I don't know...how does one keep a leg from floating sideways? And then there is Carapace and her seizures. They've been pretty much under control, and I do have shoreline life vests for us both. Those are supposed to flip an unconscious person face up. I haven't used one since I was a little kid, so I don't really remember how they worked in reality. I'm hoping that with the life vests, I won't tire as fast and Carapace will have a margin of safety. Oh, and they are orange, which will make it easier for Carapace to see me despite the world being a particularly sloppy impressionist painting when she takes off her glasses. Oh, and I got her some dark goggles, too, which I hope will be good enough for her photosensitivity to not be triggered. And sunburn-prone me will be covered ankle to wrist.

So, anything else I should do to make sure we have fun and that I won't spend our time fretting? What experiences have you all had? Tell me!

In which I take a moment to complain

I taught today, which means I was on my feet, up and down, for three hours. I feel it now. For a change-up it is my right leg that is killing me instead of my left. I shouldn't whine. I've had two really good weeks. Even though I have felt pretty much constantly like I was going to fall over at any moment, I only fell over once, and I have only had one incident of that horrible electric burning stabbing pain in the past 14 days, instead of having more like 14 in one day. So, all in all, good. But I have to repeat today's performance again on Sunday, and then every weekend until the second week of August. On top of working during the week. I hope the legs hold out, because I would very much like to go to the beach after all this is over, and the only way I am going to get there is if I drive myself.

OK, moment of complaint is over. On to other things. Elizabeth is talking about how some asshats think she is faking it. Apparently, you aren't allowed to be severely disabled and still get anything accomplished. Please. May I present Ivar the Boneless, Viking berserker? I particularly like how the Wikipedia article says that after his invasion of East Anglia, "An accommodation was quickly reached with the East Anglians." Yes, I know what it really means, but I prefer to envision old Ivar putting accessible transportation in his list of demands. Then there was Timur the Lame, who would totally have kicked your ass if you so much as hinted that, just because he took over all the territiory between the Levant and India, and was on his way to taking over China, that he was lying about being lame. Yes, and after he was done kicking your ass, he'd set you on fire and then toss your skull onto the closest big pile of skulls he had at hand.

Fortunately, most people with disabilities are nice folks who don't spend an inordinate amount of time plotting to take over the world. But the point is that people with disabilities, with diseases, with even terminal conditions aren't dead yet and have no intention of practicing being dead before drawing the last breath makes it mandatory. Harriet McBryde Johnson is one of the best known faces of that spirit of living fully. When she died, it was, as she had planned, while she was alive, not in a state of mournful waiting, but a state of planning for the next day and the next year, in a condition of action.

What about people in pain? Should they be out pushing themselves? Of course, they should! Distraction is necessary for living with pain. Sometimes, pain is too much to keep going in the way you had before, but life doesn't stop for pain. Usually, you have to do things simply because you have to do them. Not everyone is as full-bore determind as Elizabeth to push physical limits, but everyone stays as busy as possible for their situation. Boredom only makes everything worse. And spending part of your day in seizures doesn't count as boredom relieving. You can check ask my daughter about that. She constantly has projects going, different ones for different levels of daily ability. That's not unusual. That's what people do.

Me, I'm going to finish the laundry and go to sleep. And in five weeks time, I hope I will be driving two hundred miles to salt water and setting up camp.

Can this be real?

And why isn't it available yet?



A power wheelchair that looks like an office chair and weighs less than 50 pounds! Wow!

Site changes

I have made changes to my blog roll. The main thing is that I replaced my list with my disability RSS feed. Stuff that wouldn't transfer as an RSS, I have kept as web links. Most of the blogs I had successfully made the change. Some didn't, either because I find myself not reading them, they update even less often than I do, or something weird just happens when I try to subscribe to them (Evil Lunch Lady, I'm looking at you!). And there's always the probability that I just screwed up and deleted something I meant to keep.

Anyway, I hope you like it, and if you are feeling left out, drop me a line.

Oh! One more thing!

I got to see the city fireworks display from my own backyard! I hollered at the neighbors that we could get a clear view, and then we sat out in the yard, listening to the squeals of the pre-schoolers in response to the brilliant display just over the tree tops. Hurray for fireworks! Hurray for neighbors to enjoy them with! Hurray for silly five year olds!

Ketosis

Well, I have reached ketosis on the induction phase of Atkins. After the first couple of days, this diet got much easier. Since I don't usually eat bread, pasta, or cookies to start with, about the only thing I've given up on a regular basis is corn tortillas. So, I just have to have my tacos in lettuce leaves instead.

Lettuce-leaf tacos (wow, that's a bad picture!)
Friday, I had roast beef with lettuce greens, lettuce, a bit of bell pepper, a jalapeno, 4 strips of bacon, more chicken, flax seeds, chicharrones with habenero sour cream, cream cheese and celery, and cream. And a small glass of red wine.

I have pretty much finished off that chicken, unless I want it to be soup, so I guess I should finish off one of the pork chops. And I intend to make some freezer ice cream, partly because it seems like a good way to mix in the fiber supplement I'm taking.

Now for speculation. Usually, I have terrible burning stabbing pains that erupt in my legs, hips, and abdomen. I haven't had one this week. Is it because of this diet? Or am I just having a lucky week?

Declaration of Interdependence

The best thing about disability is that it really brings home the truth that community and individualism are intertwined. The best community is one that supports individual achievement and difference, and the best individual is one that gives back to community.

Elizabeth is a great example of that in action. Beth has repeatedly defied society's vision of what someone in a terminal condition should be doing (i.e. looking at plants), and dared what so many of the rest of us have only dreamed. But she does it, in large part, knowing that she has supporters, people who think the world of her and her fierce determination. What she does, who she is, how could she do or be without any of us? When we cheer her, we cheer us, too. And she gives back fully. By daring to take risks, she encourages the fainter hearts among us to do what otherwise might only be a dream. Carapace (yes, I'm prejudiced here) is another person whose independence and individualism is supported by a community, and she gives back to make the community stronger. She doesn't do it the way Elizabeth does. She does it by dint of her sunny personality. Right now, she can only work a few hours a week, due to her seizures. But because her boss tolerates her seizures, her husband and I provide transportation, and the US taxpayer covers her medical expenses, the reward is that everyone who comes to the desk when she is on duty goes away feeling better about themselves. She has a compliment for everyone, insidiously spreading good will and positivity every chance she gets. Take a look at Stephen, over in the UK. He's the first to tell us all that his wellbeing is dependent upon a community that cares about him as an individual. From his loving wife, to his mother-in-law, to the infamous NHS, a community web exists that allows him to make his individual contribution to the greater good. Where would his kids be without him? Or the many friends and kinsmen who count on him as part of the joy in their world? I could go on, but I'd really rather people tell me about how they see this interdependence in their own lives. (Yes, that's a plea for comments).

Where the individual wheels, the path becomes smoother for those coming behind, who are not trailblazers, and for those who are adventurous by nature to take new, fresh risks that will continue to open the path for the community. So, by supporting individualism, the community benefits by having individuals who are more able to be part of the community.

Happy Interdependence Day, everyone.

Days 3 and 4, and this looks like it will be worth it

Wednesday, Carapace came to work with me and she made sure I ate just like I was supposed to. I had a piece of cheese, some proscuitto, and an onion for breakfast; beef, chicken, sour cream, lettuce and a bit of cheese and salsa for lunch; then a dinner of beef, zucchini, and mushrooms. For snack, I had chicharrones.

Today I didn't eat breakfast, what with needing to go to the store and to pay some bills before heading off to work. But lunch was roasted chicken, baby greens salad, a little cheese, and sour cream. I haven't eaten dinner yet tonight either, as it approaches midnight, though I just had a snack of chicharrones and sour cream with habanero salsa. I also had a Coke Plus today, which I had never had before. It is a diet Coke with vitamins and minerals. Other colas have been doing this for decades, but Coke just started this recently.

I split the Coke with Carapace, who was at work today, too, even though she thought she wouldn't be able to make it as she was anticipating a major brain meltdown. But it never happened! Sure, she was in pain and lost partial control of the right side of her body, but she never once went unconscious! Oh, let her tell it herself....