Tags: disability

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Tidbits

Various tidbits that we will pretend make a post!

1. I spent most of last week and weekend at ICFA, the International Conference for the Fantastic in the Arts, which for many people is an academic conference offering important insights about fantasy and the arts (literature, film, television, apparently tarot cards) and for me is a time to have a nice drink by the pool. Various personal issues and getting extremely sick prevented me from enjoying this conference as much as I would have liked, but I did have a chance to do a reading with Eugene Fischer and Dennis Danvers By a complete coincidence, we had all managed to choose stories on a similar theme: horror stories about the process of creating story. And by horror, the excerpt from Eugene's novella strongly suggested that we are all going to die, Dennis' story chatted about a puppy strangler – and by this, I mean, someone who strangles puppies, and my story had a house built from the teeth of small children. All very cheerful for a Saturday morning, though the puppy strangler story had us all collapsing with laughter. I think you have to read it to understand.

Special thanks to Julia Rios and Keffy Kehrli for helping me out during the conference.

2. Alas, attending ICFA meant I missed going to Megacon – and seeing many of you – but it looks like next year the events are on separate weekends. I'll keep my fingers crossed that golf is on a separate week.

3. While I was at ICFA I did get various tidbits of good news, including:

The release of Mythic Delirium 0.4, April-June 2014, available from Weightless Books here, which contains my poem, "The Silver Comb." (If you check, you will also see that it lists my name right under Jane Yolen, which is pretty awesomely cool.)

The news that Upper Rubber Boot Books will be reprinting my short story, "Twittering the Stars," as part of their new upcoming SOLES series.

I'm particularly delighted by this second bit since prior to this, although "Twittering the Stars" was hands down my most widely and best reviewed story (well over 40 positive reviews the last time I checked) it was also only available in an anthology that briefly popped up in bookstores and then mostly vanished, although the ebook is still available, which in turn meant that it was also one of my least read stories. I've been hoping for a chance to have it released into the wild again, so this is pretty awesome.

I'll also just note that Upper Rubber Boot Books offers a lovely selection of poetry books.

4. And while I was at ICFA and recovering from ICFA, Tor.com blogging continued! Two more posts on Mary Poppins, here and here, and also a second post chatting about Once Upon a Time and Oz here where I am VERY DISTURBED about the biological implications.

The Once Upon a Time Oz posts are not going to be a weekly event, primarily because so many parts of the show leave me wanting to throw things at the television or slam my head against something, and this sort of emotional reaction is a) not appreciated by the cats, who, as they have noted, do not deserve to have their hard-earned cat naps disturbed by this sort of thing and b) not really helped by friendly contact from the ABC publicity department (though I appreciate the effort.)

5. But regarding the upcoming Game of Thrones season four: yes, I do plan to snark individual episodes here, but I may be a bit delayed depending upon when exactly the new computer arrives.
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World Fantasy Con, 2013

So for those wondering why, after three straight years of attending World Fantasy Con, I will not be attending this year, I quote from World Fantasy's Con news updates.:

"These events will be held during the day in the Chartwell room at the very top of the Hilton, which offers stunning panoramic sea views on Brighton. (Unfortunately, this area of the hotel is inaccessible by wheelchair.) The maximum number of people in the group is 20. Places must be pre-booked and will be allocated on a first-come basis. We are making a minimal charge of £5.00 each to cover coffee and biscuits, plus it helps dissuade people from dropping out at the last minute, when somebody else could have had their place."

(Emphasis mine.)

As I have noted to some of you, my original plan for 2013 was to go to World Fantasy Con and then head over to Spain and Germany to catch up with various friends currently living in Europe, most of whom plan to return to the U.S. in 2014/2015. Giving up this trip was a major, major disappointment. At the same time, I did not want to attend three World Fantasy Conventions with accessibility issues in a row.

This is especially aggravating since the 2009 World Fantasy Convention in Columbus was generally fine (minor hiccups but nothing major). So it is absolutely possible for WFC to use a wheelchair accessible hotel, and yes, the United Kingdom has disabled accessible hotels and laws about disability and discrimination.

But WFC chose not to use an accessible venue, and so, I cannot attend.

(Thanks to Amal El-Mohtar and Farah Mendlesohn for bringing this to my attention.)
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Apology from Lone Star Con

Just wanted to note that the chair of Lone Star Con has apologized to me over at Rose Lemberg's blog. Since my comment responded to is one of the most minor points, I hope that the Chair also has read my two other comments there as well as the feedback from other users, and that future Worldcon chairs will take a look at well.

Otherwise, I want to thank Lone Star Con for the apology, and hope that future Worldcons will be better.
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Worldcon: the panels (warning, long)

Just before the Thursday morning Stroll With the Stars I heard a rumor that Programming was having some issues thanks to last minute cancellations and other things, with several panels having empty slots. Eyes rolled over in my direction.

Now, for various reasons, I haven't been on any panels at science fiction/genre conventions before (other types, yes). Partly this is because I still feel like more than a bit of an imposter at cons, but mostly, this is because I have a very unpredictable illness which may mean that I will have to cancel at the last minute – and may not be able to let anyone know that I am cancelling.

However. Thursday morning I was high on sugar and caffeine (thank you overpriced Starbucks) and trying to figure out how to cancel my ongoing guilt/imposter feeling. So after the Stroll With the Stars a very kind person took me to the convention center, where I met up with another very kind person who offered to take me to Programming.

Through no fault of WorldCon, Programming happened to be located in arguably the Most Difficult To Find Place in San Antonio. The volunteer and I went Round and Round and Round, and then, for a change, Round, and then more Round, before finally finding the place. There I met a clearly overworked woman desperately trying to work out con schedules. I gave her my brief bio and what I'm sorta known for (Oz, poetry, short fiction, children's literature.)

I was offered the Disability in Science Fiction panel.

I use a wheelchair.

I was also warned that the Disability in Science Fiction panel did not have a ramp to the stage but since I was now part of the panel she would try to find a solution. I was also put on the How to Publish Your Poetry panel, and then I took the little Water Taxi back to the hotel.

About an hour later, a poetry editor rejected a couple of my poems, kinda solidifying my thought that this whole paneling thing was really not a great idea, unless everyone wanted to learn How to Get Your Poems Rejected. That, I'm really really good at. I was also worried about the Disability in Science Fiction panel, largely because I mostly read biographies and mysteries, not science fiction, and I knew the other panelists knew more of the field than I did. A couple of very nice conrunners/SMOFs from another con assured me that even if I threw up on other con panelists worse things have happened. So, I stayed on.

Saturday morning Rachel Swirsky texted me to say that Nancy Hightower was moderating a Prose by Day/Poet by Night panel at 11 am which now only had two people on it and could I fill in? I said yes and got more coffee. Another very nice person pushed me over to the SFWA meeting which started at 10.

At 10:30 I left the SFWA meeting to make it to my poetry panel. I pulled out my little Helpful Map where my route had been marked out by a Worldcon volunteer. This meant going down carpet (check!) going up an elevator (check!) following my little map and going forward (check!) finding myself at another convention....

Uncheck.

After a short discussion with the People Magazine convention we agreed that I could cut through their convention IF I was escorted. I put my hands up and didn't look at anything (then) and made it to the other side. I decided to visit a bathroom, which went as those things do until I came out and someone accidentally spilled hot coffee over my right hand. Ouch. I headed over more carpet and looked at my watch and my little map and decided to ask for the most efficient route. Luckily at this point Juan Sanmiguel spotted me and took me to the panel, arriving at 10:59. Yes, it had taken me nearly a half hour to get from the SFWA meeting to the panel.

Where the three other panelists (L.E. Modesitt had joined at the last minute) were all up on a stage that did not have a ramp.

So they stayed on the stage and I stayed on the floor with a mike.

Otherwise I think that panel went well although I admit I was kinda sad when Locus came in to take a picture and missed me because they didn't realize I was part of the panel (it was when the others were talking). Oh well. Otherwise, it was a great discussion.

Sunday I headed over to the Disability in Science Fiction panel. There was no ramp to the stage. Instead, tables had been set up and we all sat in front of the stage to accommodate me. This was a relatively large room and people in the back apparently couldn't see me (some people later told me they couldn't figure out why we weren't on the stage until I mentioned that I was in a chair, but even then, they couldn't see that access to the stage was up steps, not a ramp. Also, the panel did not have an ASL interpreter. (I don't think any panels did, but for the Disability panel, that would have been a nice touch, especially since the subject of the Deaf community/writers did come up.)

I'm not going to rehash that panel here except to say that yes, I was upset, and no, honestly, I am not dealing with illness related stuff, including the wheelchair, right now all that well at all (in case it wasn't incredibly obvious.) Working on this. I also suspect that my disappointment about the Alamo (separate post) played a role.

Anyway.

A Florida friend not at the con told me to get away from the con for a bit, so I did, avoiding everyone. And took a nap. Then I came out and crept back over to the convention center for the How to Publish Your Poetry panel. This was me, Jo Walton, Rachel Swirsky and another older gentleman whose name I didn't catch. Jo asked us all to explain why we were on the panel. In answer to this, the gentleman noted that he'd been asked at the last minute to join the panel and be a warm body, and that he had last published poetry in the 1960s. Somewhat later he noted that he had written poetry to pick up girls, and that he had stopped writing poetry when it didn't get him any girls. Rachel Swirsky, who is awesome, instantly responded, "I don't know. I get plenty of girls."

I thought this panel was otherwise ok, although apparently some of my residual anger/emotional reactions were still around; the audience later said they found me intimidating. I don't feel particularly intimidating, so this is a hard word to wrap my mind around. I'm also not sure if I got my main point across, which is that we are currently in what I would call a miraculous, marvelous age for speculative poetry, with poets doing incredible work with traditional forms, experimental forms, fun forms, and just transforming words into beauty, so marvelous I want everyone to be a part of it.

It was an interesting experience overall, but I think I should probably stick to not being on panels for awhile.

Edited to add: To be clear, compared to a couple of past events, this was relatively accessible. The Marriott Rivercenter was mostly ok except for a few hiccups. The real problems happened outside the Marriott Rivercenter hotel, and were generally more associated with San Antonio/typical accessibility things.
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The bathroom saga

A few points of background. One: alas, these days when I use the bathroom I almost invariably get dizzy. Thus the need for handrails - it's not just a question of the wheelchair. Two: the Southwest gate areas at the Orlando International airport have two sets of women's restrooms: one by the food court area and one further down, in the actual gate area. That second set has exactly one - count them, one - disabled stall. Three: on each and every trip I have made through the Orlando airport I have seen multiple people in wheelchairs, mostly but not all elderly. This includes spinal users who cannot walk at all.

So, as you do, I decided to go to the bathroom before my flight. The stall was closed, which, no biggie. I could see a bag and feet moving around so figured, sigh, another parent with problematic toddler. (This happens a lot.) I wasn't in a rush, so waited, resigned, and sighed when I heard a voice say That's my baby. Minutes passed. I checked twitter. I started to get worried about timing (Southwest requires that I board early). Two more minutes and I will say something.

And then I saw it, or rather them: dog paws.

Ok, I thought, still holding to my "this involves a toddler" thought, they must be traveling WITH the dog...

And then I heard it.

I had been under the naive impression that I had become accustomed to the worst that can happen in disabled and women's bathrooms. Apparently I was wrong.

"Hello," I shouted. "Actual wheelchair user here."

"Oh," she said. "I'll be out in a minute."

"I have a flight."

"Oh."

She came out with a non apology. I peered in, swore, called the airport and sputtered the story in two languages. They got someone to push me to the other set of bathrooms and told Southwest I wouldbe late. Luckily the plane was slightly late so that worked.

I got on the plane still fuming. Passengers boarded after me and then I realized that she was sitting in the aisle seat with the dog, only one seat between us. Which was soon filled by another woman.

Dog lady didn't recognize me. But she was willing to complain, at length, about Southwest and dogs and how it cost $75 to bring the dog which is so unfair because she's taking the dog as a carryon anyway which means she has to put her real bag up so she can't even get at it during the flight and worse with the seats in the front her little dog was squished (this part was true. Poor dog who did not deserve any of this and it's awful because Orlando doesn't let you take the dog out of the bag in the terminal so she had to use the disabled restroom but what could she do? She certainly couldn't leave the dog with strangers but it was such a long way to San Diego and she had to do something.

"Or you could use a regular stall and clean it up."


"But that doesn't give her enough room!"

Also, she didn't turn off her cellphone when the captain said turn all cellphones off.

She must have gotten some hint of my fury, since she both rushed to another row once we landed in San Zntonio and asked why it was taking Southwest so long to get my wheelchair up. Then she took out her dog.

I reported her to the pilot who was coming aboard just then. She will be reported to the Orlando Airport.

In other news I am at Worldcon and can report that there's quite a few people here already, and the bar is right across from the Starbucks.
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Weekend musings

Saturday I decided it was high time to rejoin the human race, so I took my little scooter over to the farmer's market, quite forgetting that we were supposed to head down to my mother's. Whoops!

I have mixed feelings about the whole going by mobility scooter thing. I used to take the trike, but that requires using the cane once I arrive, and the farmer's market is filled with small excited children looking for clowns, camels, and ice cream and not me; I've been knocked down a couple of times. So I thought the scooter would work. And it does, sorta, but I still find using the thing outside of theme parks highly irritating -- not to mention it's kinda terrifying to cross busy streets with it. It's low to the ground, and I know drivers can't always see me in it, and for safety reasons it can only go so fast. I really wish it had a way to go just a little faster when crossing busy streets. Oh well. Not to mention that my feet swell up after a mere hour on that thing. Grr.

But I did do fairly well at the farmer's market, since local oranges, cucumbers and tomatoes were all on sale. The prices may quite possibly mean that I overdid it on cucumbers; I don't like oranges, so I restrained myself there, but cucumbers are awesome, so, no restraint. Local honey was not at all on sale, but it was there so, er, local honey. Also a mango cheddar which, yes, I shouldn't be eating at all, but, mango cheddar. What can I say?

Hopes that the trip would shake cobwebs from my head were alas overly optimistic. I came home feeling completely drained, a feeling that persisted and worsened on Sunday, when my body suddenly decided it had had enough. I wasn't dizzy - a nice change - just completely wiped, so I spent much of the day sleeping, looking outside to not see hummingbirds (they've been coming to our feeders, but never when I'm looking) sleeping, comforting a cat, sleeping again. I still feel drained this morning, if at least a little more capable of finishing sentences.

In mostly unrelated news my brother put up a second set of bird feeders and a birdbath near the dinette window. This has delighted a number of creatures, including the two cardinals who appear to have taken up permanent residence in the yard, some house wrens, one very happy cat (the window has a sill that is about the perfect size, if you are a cat), and, of course, one squirrel. The arrangement was not precisely ideal at first, since the birdbath was located within perfect jumping distance of the feeder for the squirrel, who would see either me or the cat and leap happily over to the birdbath, scattering water everywhere. This has been changed, forcing the squirrel to either leap down to the ground or climb down a pole, burning off some of the calories gained from the sunflower seeds. I've yet to see anything other than the squirrel using the birdbath, but summer is coming. We shall see.
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(no subject)

Unbelievably out of it today -- so out of it that although I made coffee and poured it into a mug, I forgot to drink it; no, really -- but I did want to point Little House fans to the news that Mary Ingalls did not go blind from scarlet fever after all.

From a writing point of view, I'm fascinated by the suggestion that Laura Ingalls Wilder, Rose Wilder Lane, and the New York book editors all agreed that "vague viral or bacterial brain infection that we don't exactly have a name for" would be too confusing, and that it was better for Mary to have the literary illness of scarlet fever instead.

Particularly interesting since in literature (not reality, before people leap up to correct me) both scarlet fever and tuberculosis tended to turn children into inspirational household angels, beloved by all, probably best exemplified by Beth of Little Women. Some of this, of course, doubtless reflected the reality of mourning for lost children and a tendency to idealize their memories; some of this may have been attempts to alleviate the anger and resentment that healthier children may have felt about the need to care for their sicker siblings.

In the case of the Little House books, Mary Ingalls is initially described as a well behaved little girl with three traits that drove her little sister nuts: Mary is bossy, superior and prissy. After Mary's illness and blindness, however, she becomes the angelic center of the household: always helpful, always good, never losing her temper, the sort of person that you would want to sacrifice everything for, which the poverty-strapped Ingalls family did, having their daughter Laura work for pay starting at 13 (in the books; 11 in real life) in part to raise the money to send the talented Mary off to college and perhaps train her for a career despite her blindness.

It's a heartwarming portrait, but I've always wondered how much nostalgia and anger shaped that portrait. This study raises those questions all over again.

Ok. Hopefully I'm alert enough to go get milk and other necessities.
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Airport security and disabilities

Headthunk.

This morning's bit of news is that the New York Times and CBS News believe that people are using wheelchairs to skip airport lines legally.
Now, neither the New York Times nor CBS nor these alleged cheaters interviewed me, but if they had, I would had had a bit of news for them:

You rarely save time by going through the disabled line in security.

If only.

Since using the wheelchair, I have had to add to my airport arrival time. Sometimes, yes – especially in Orlando, which deals with numerous disabled visitors – it's not too bad. Other times – hi, Indianapolis and, especially, Logan, Boston – it's a freaking nightmare. In Indianapolis it took me twice as long to check in and get through security as it did for the two people who arrived in a taxi two minutes after I did. In part this is because I'd sent my mobility scooter back to Florida by car, and was on the cane, thus using those temporary wheelchairs. When security saw me in a temporary wheelchair, they assumed I would be able to stand and walk without my cane for long enough to get through the X-ray and/or scattershot machines, which, alas, not so much. (No one makes this assumption when I am in my own chair -- the assumption is that I can't get up.)

But mostly, it takes time because it takes time to clear security in a wheelchair. A lot of time. Here's why:

1. Most airports have only a limited number of wheelchair attendants. So, instead of just proceeding on to security and the gate, you have to wait for the attendant. This has varied – Orlando is anywhere from five to fifteen minutes; San Diego was twenty, Boston is "pray very very hard." (Rumor has it that prayer is also critical for wheelchair users in O'Hare.) This is why many wheelchair users try to travel with a companion.

2. Wheelchair attendants often double up, pushing you and someone else. (This is invariably true in Orlando.) This means that even if you are able to stand without a cane for long enough to get through either the X-Ray or the body scanner machines (I can't) whoever is getting pushed with you often can't so you have to wait for the other person.

3. Contrary to the opinion of the Delta person quoted in the article, wheelchair users don't skip lines. Sometimes we go to the Dedicated Wheelchair line (Orlando, San Diego) but smaller airports (Indianapolis) or airports that apparently don't service a number of wheelchair users (also Indianapolis) don't have Dedicated Wheelchair lines and we just wait in line, along with the attendants, with everyone else.

4. Even in cities with Dedicated Wheelchair lines, the Dedicated Wheelchair line is not any shorter, in part because able bodied people and/or families travelling with small children are sent to stand in it, especially if the airport is busy, which in Orlando is "all the time." And yes, this means that if a small child in front of you does not WANT to remove her Disney Princess tiara, you, too, will wait while everybody convinces the small child that even Ariel removed her tiara the instant the TSA arrived. (It's someplace in one of the films, I'm sure.) Even when it's mostly wheelchairs (I've never seen it all wheelchairs, although I assume that's a possibility) there's still a wait, largely because wheelchair users need more time to clear security because:

5. Shoe removal. I can and do remove my own shoes. Most of the time, however, I'm being pushed with someone who can't, so the wheelchair attendant has to remove that person's shoes, and then put that person's shoes back on, and, yes, you have to wait for this. In many cases, "can't" also means "swollen and/or painful feet" or "special shoes that take freaking forever to take off and later put on and lace up."

6. The patdown. Remember I noted that generally speaking you aren't going alone – you're getting pushed with someone else. One or both of these two people will require a patdown. (It's always me but I've definitely been pushed with others requiring a patdown.) This means finding a patdown security guard of the correct gender (hi, wait), and then doing the patdown. Even in the Dedicated Wheelchair line this can take time since the patdown people are often summoned to other lines to do patdowns because of problems with the scanners.

The patdown itself takes a couple minutes – longer than just walking through the X-Ray machine or going through the body scanner. During this period the wheelchair attendant generally gathers all of your stuff, and gathers the other person's stuff, and then, heads to the chairs at the edge of the security area and sits and waits. Incidentally this is also a period where I can't possibly watch my stuff, and I suspect this is when many people get robbed.

Oh, and, again, you're often with someone else. That someone else often has any number of things that slow down the patdown process -- inability to lift arms high enough, oxygen containers, prosthetics, medical documentation requiring review, inability to move legs, and so on.

In one case I watched an issue with someone using a mobility scooter who went through the body scanner without a problem and then had his mobility scooter test positive for something, so they had him sit on a chair without getting his stuff back, which then led to the security people yelling that the stuff had been left there for fifteen minutes, so they took it to lost and found, and...yeah. He looked at me as I was waiting for the patdown and said, "Next time I do the courtesy chair just to get my stuff back." (People using mobility scooters to get through the airport usually don't use attendants, although I have seen airport attendants accompanying passengers in electric wheelchairs, even when those passengers appear to be with family members or friends.)

7. If you are in your own wheelchair, and I usually am, the wheelchair has to be checked for bomb residue, which is another wait. This doesn't apply to the courtesy chairs, but, again, those courtesy chairs are usually travelling with someone else, meaning an additional wait for the bomb residue.

8. Regarding the abandoning of wheelchairs at the other end – I'm sure this does happen, but it's not because wheelchair users are the last to get off the plane. It's because, news flash, you also have to wait for a wheelchair attendant and courtesy wheelchair on the other end even AFTER waiting for everyone else to get off the plane. In my case I'm usually waiting for the wheelchair attendant after I've already waited for my wheelchair to be brought up; in the "this is why I try not to book connecting flights" I would have missed my connecting flight in one case if the connecting flight had not been delayed. This happens because – see point one above – most airports have a limited number of wheelchair attendants. And because sometimes it takes awhile for your wheelchair to be brought up from the cargo department. (In one case they accidentally sent my wheelchair to baggage claim and it had to be brought back.)

Sometimes it's just five minutes; sometimes it's twenty. Sometimes it's a half hour, with you sitting there as the airline attendants call the airport again and again for a courtesy wheelchair, again, AFTER you have already been one of the last, if not the last, people off the plane. And now, think for a moment: how long does it take most people to get to baggage claim? And, a key point: family members and friends can come to baggage claim to help out. So, yes, I'm sure plenty of people, especially morning/afternoon arrivals when the attendants are both getting people to security and over to baggage claim, do decide to just head down to baggage claim on their own so that they can finally do something quickly.

Also, not to really emphasize the issue, but, bathrooms. I encountered one elderly woman who got on the plane with a courtesy wheelchair, left the plane with other passengers once we landed instead of waiting for another courtesy wheelchair, and then ended up waiting at the gate with me for a courtesy wheelchair/attendant to help her to baggage claim. Her very believable excuse for this was that otherwise Southwest was going to have a horrible cleaning job and she really couldn't wait to be helped off the plane, even though she had visible walking problems and had to be in her 90s.

9. Oh, and abandoning the courtesy wheelchair right after clearing security? I've never seen this, but I suspect if it does happen, it happens more because the people might be able to walk the short distance from security to chairs by the gate, but could not stand in line without sitting for that long, either because of dizziness/pain/whatever, and because by this time the people have already spent considerable time in line. Or, they need to get a bathroom.

Edited to add: By the way, here I am talking about people who may well be able to walk short distances with or without the help of a cane, but for various reasons (arthritis, heart issues) cannot walk long distances or stand for long periods. Quite a few people, particularly the elderly, fall into this category.

10. And also, all this said? Can we perhaps consider that quite possibly the real problem is not people faking disabilities*, but that we have lines AT ALL for airport security, a process that by many accounts is not making anyone safer but is forcing people to waste time waiting in line and taking shoes on and off while giving security agents plenty of time and opportunity to steal electronics and sell them on eBay? After all, nobody is accusing anyone of faking a disability to get on Amtrak quickly.

This is a distraction. The real issue is what, if anything, we can do to make airports safer and more efficient for everyone. Including wheelchair users.

* Assuming they are faking – many people with chronic illnesses, including me, can look perfectly fine and healthy one moment, and be very sick the next moment.