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.

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.

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….

Butter that bacon, boy

(This salad in a bacon cup is from Not Martha)

Monday, I started the Atkins diet. I’m doing it with my daughter, Carapace, who is trying it to see if it will limit her seizures. Me, maybe I will lose weight. Or not. I’m mostly doing it as moral support. It’s hard being on a diet all by oneself, and a lot easier if family participates.

I am doing it without the knowledge or blessing of my doctor, who is concerned about my cholesterol levels. Am I concerned about my cholesterol levels? No. They tend to run high in my family, yet no one seems to have any troubles until their 70s. The doctor wants me to stop eating bread and butter. As he told me what he wanted me to do, I kept pointing out that I don’t eat wheat products, therefore, I have very little reason to use any sort of spreads. In an entire year, I don’t quite finish off one quart of cooking oil or a pound of butter. Whatever caused my cholesterol to be too high for his satisfaction, it wasn’t my diet. At least, by being on Atkins, in a couple of months, I will finally have something to give up. And I look forward to that day, because Monday’s meals were tasty but way more fatty than I am used to.

Breakfast: 2 eggs, cooked in butter, one cup half decaf coffee
Snack: boiled egg
Lunch: A fatty pork chop and 2 cups of lettuce, with an olive oil dressing and cheese
Dinner: Who can eat dinner after all that fat? It took me all afternoon to eat lunch.
I have drunk a lot of water today, which I don’t normally do, so I guess that’s a benefit that I wasn’t expecting.

I did breakdown and have a handful nuts, which I understand are a bit too carby for this stage of the diet. But I wasn’t driving 30 miles home without something for my brain to burn.

Tomorrow, I’ll try for more cheese and some zucchini. Doesn’t that sound nice? Zucchini with cheese and proscuitto.

I’m really looking forward to more vegetables in two weeks time.

Isn’t Yahoo in violation of the ADA?

According to Yahoo’s service agreement, there is no recourse for people who have seizures from exposure to their blinking ads except to stop using their service:

A SMALL PERCENTAGE OF USERS MAY EXPERIENCE EPILEPTIC SEIZURES WHEN EXPOSED TO CERTAIN LIGHT PATTERNS OR BACKGROUNDS ON A COMPUTER SCREEN OR WHILE USING THE SERVICE. CERTAIN CONDITIONS MAY INDUCE PREVIOUSLY UNDETECTED EPILEPTIC SYMPTOMS EVEN IN USERS WHO HAVE NO HISTORY OF PRIOR SEIZURES OR EPILEPSY. IF YOU, OR ANYONE IN YOUR FAMILY, HAVE AN EPILEPTIC CONDITION, CONSULT YOUR PHYSICIAN PRIOR TO USING THE SERVICE. IMMEDIATELY DISCONTINUE USE OF THE SERVICE AND CONSULT YOUR PHYSICIAN IF YOU EXPERIENCE ANY OF THE FOLLOWING SYMPTOMS WHILE USING THE SERVICE: DIZZINESS, ALTERED VISION, EYE OR MUSCLE TWITCHES, LOSS OF AWARENESS, DISORIENTATION, ANY INVOLUNTARY MOVEMENT, OR CONVULSIONS.

This is ridiculous. It would be a simple matter for them to include a preference for non-blinking, non-strobing ads and backgrounds. Shame on Yahoo.

Subway Hero

I suppose everyone has heard the story of Wesley Autrey’s heroic act by now. And I certainly have no intention of arguing that Autrey was anything other than heroic when he rescued Cameron Hollopeter from the oncoming train.

But…

If you ever come across a person having a seizure, you don’t stick anything in their mouths. Never, never, never. This is something that my daughter lives in fear of, that some helpful soul will come across her while she is defenseless and stuff a spoon in her mouth. Stuffing a pen in the mouth is equally Not the Right Thing to Do. If you don’t believe me, believe the Epilepsy Foundation.

So, what should you do? It’s easy, and you don’t need to be particularly heroic:

Move anything dangerous out of the way.

If the person is in a dangerous place, like the middle of the road or the edge of a subway station or face down in a puddle, move the person having the seizure out of the way of harm, just like you would for anyone else you find in a dangerous place.

Wait with the person to keep panicky sorts of helpers from stuffing things in their mouth or doing CPR or other inappropriate things.

Do not restrain the person having the seizure.

Seizures generally don’t last more than five minutes or so, but afterwards, the person who had the seizure will likely be tired and maybe a bit fuzzy. Ask them if they would like a chair, a drink, a bite to eat. Ask if they would like you to stay with them for a bit. At this point, they will be able to tell you what they need. Believe them when they say they’re OK.

Now, isn’t that easy?

Thanks.

fairy dusted

This particular story takes place at the ren fair this past weekend. Saturday had pleasant weather, but it turned out to be too hot for my daughter, who tends not to sweat and was in garb. She began displaying signs of confusion and irritation, but was determined to charge onward all the same. Which, unsurprising to me, led directly to a seizure.

Now, I am used to these events and know that, as long as she is still breathing, that there is nothing to do but wait it out. Most people simply passed by, not ever noticing the young woman prone in the dirt. A few came up, asking if they should call for assistance. This is the norm. My role in all this is to simply assure others that she isn’t dead or about to die, and to make the entire situation look as unremarkable as possible.

After a good 15 minutes, she finally regained consciousness and began slowly scolding me, as usual, for not having done an adequate job of both being right there and leaving her alone. She’s my child, so I expect this too.

While we engaged in our ritual of mother/daughter dynamics, and I was thinking that I no longer had to be on the lookout for people bothering her, a foot suddenly comes down on her diaphragm. Attached to that foot was a woman in a fairy costume. After a shocked split second, M.D. pushes the fairy off and chokes out: “I’m not part of the performance” while I holler “She’s just coming out of a seizure. Get off her!” A different fairy inquires if she should go get help, but personal-space invader fairy just stands there gob-smacked.

We expect people to stare, to inquire, to want to try out their Red Cross skills. We expect them to just walk by quickly, pretending there is nothing out of the ordinary happening at all. But we never expected that anyone would decide that someone who has fallen to the ground makes a great prop.