The East Kingdom lost someone very dear to many - I never got to meet him but heard and am still hearing many good things about him - last weekend.

Well, one of the things His Grace was apparently well known for was encouraging people in their endeavours.  After his passing, His Grace Lucan said to those of us who call him friend, in honor of His Grace Kendric, that we should try something new.  So, here is the (potentially crazy) thought that popped into my head.  I am both a herald and a bard, as you know, but I have always longed to be able to be a fighter.  Um, yeah, my illness/disability kind of prevents that.  I have done thrown weapons (we call it Thunk here in the EK), and I actually did enough seige training to get my authorization card once upon a time:).

One of the things you probably don't know about me is that I do sword with my cane when I have good enough balance to do so (almost there again.  It's very good exercise, actually!

But, well, here's what I thought of:  creating a group called Disabled Fighters of the SCA.

Read that again.

We know what it means to be a fighter, to actually fight for your life.  I'm also betting that I'm not the only one here who can't safely fight as it stands, but who would love to do so.

Well, if you have the ability to stand, (hidden illness/disability MOST likely) I can show you how to swing a cane.  (I know very basic moves; anybody watching this who knows better ones, let me know).

If you're in a wheelchair, I'd count you as a mounted combattant.  But, I can still teach you to swing a cane.

I'd suggest using your cane as a mark of who you are, NOT completely helpless, but still a fighter.

Now, obviously, current Marshals' rules would call this a red flag; can you be safe on a field?  In a skirmish?  No.  Not currently.  Nor would I want the current fighting styles be dumbed-down; that is the exact opposite of what I want.  At the moment, as things stand, we can do seige weaponry and thrown weapons, and that's that.  I think this could somehow work, though.

Thoughts and ideas are very, very welcome.  Of any kind.  And yes, I'm ok with getting into heated discussions about this, if it comes up.  We are disabled; doesn't necessarily mean we're done.

(I told you it was a crazy idea:)).

at your service
Lady Brigit of Longwood

I'd say one of the worst things in the world for a SCAdian is to not be able to BE a SCAdian.  Sure, there are other, terrible things in our lives, but that's my point:  a SCAdian with a disability can't necessarily navigate those dark corners as well, if at all.  We can push ourselves at times, depending on various things, but other times let's just face it:  events are hard to do when you're feeling crappy due to your illness/disability.

So, let's talk about how to be a SCAdian when you're not able to "be active".  Well, we can be active even so, a good deal of the time.  Sure, there are definitely different priorities when in a hospital, and again when rehabbing this or that.  Buuut...

At home, we can do a lot.  Me, for example, I'm both a bard and a herald.  Oh, man do I love reading scrolls in court and watching people get awards.  I used to be able to tromp around event sites yelling "Oyez!"  Currently, not, but someday I will do that again.

Right now, you see, I have to go to events with a wheelchair.  I spent Crown in a wheelchair.  And, well, my system's currently not strong enough to do a lot of the voice herald stuff I love.  Soo, what do I do?  Book heraldry.  I can do the Kingdom Letters of Intent when they happen.  And, in between, I can read and comment/ask questions at the Heraldry Chat Facebook group.  Haven't exactly figured out a bardic equivalent, but it'll come.

The point is, I'm feeling like I'm still useful because of that.

So.  When you're stuck at home because your illness has flared up or is really tiring you out and causing you pain, think of what version of the stuff you love about the SCA you can do there, till you can get out again.  What would you do?  Could be reading on the subject, watching videos or movies about it... let's think here.

Yup, the last event we were at was indeed fantastic, and not just for regular SCA things I'd been missing:  I was very happy indeed to see a rather accessible site, not only that, but some things that thrilled me even more such as a sign-language interpreter in at least the final Court!  (I didn't see an earlier one because I was busy with something else).

There were many other people than myself who were present with a visible disability.  Years ago, back in 2006 or so I believe it was, I remember few folk with wheelchairs or canes at events.  You'd occasionally find someone with a service dog; I've a friend with one so yeah that was present:).  Not common, however.  I spent awhile speaking with a very nice gentle named Severin in fact, about how by now there's a handicapped camping area at Pennsic!  And, I also learned later when we reached home that someone at there had actually been livestreming the fighting, which is an advancement that even I (a half-luddite) can approve of; it allowed those of us unable to be there for whatever reason to enjoy the event from home!

Now then, things that were, um, not so positive.  You see, I remember myself at a higher stamina level.  Lol, a VERY high one, some might say.  *sigh*  And I'll fully admit that even at home, when I'm walking around my system rarely gives me notice before it juhst, erm, goes.  So yeah there's that.  Now then.  I brought pain meds with to the event, and certainly took theSm.  I made sure to try and keep hydrated too!  And, I took breaks.  I had literally promised people beforehand that I would, and if you know me, you know I keep my word.  So I figured I was doing the right things, ALL of them.  No kidding.  Even when the event went a bit later than I expected, I still felt reasonably ok.  (I think actually I've discovered the flaw in my case in wheelchair-sitting; there's no legs folding under you or anything like that, or ANY signal that'll happen).

So, yeah, this all gave me a false feeling of "Oh, I'm fine" - and 20 minutes down the road, wow I was not. 

My adrenalyne crashed - HARD.  Yeah.  In the car:(.  NO warning, as I've said.

It took me a couple days till I at least felt ok enough to write on my regular LJ a post about the event; it's taken a couple more for me to formulate how exactly I wanted to phrase this one.  Seriously, I'm pissed at myself and my own damn body for doing that.  It means, I know, I need better stamina for one thing; I've come a loooong way just to be able to get through an intense event like Crown.  But, I'm not certain what other things I can do.

So, I pose these questions to you folk - this'll be xposted to facebook as well - because there are many things I don't know:

* If you sit in a wheelchair even for some of the time, how do you know when you need to rest/drink/eat/more?

* Quick ways to keep adrenalyne supplied during the day?

* I've listed the good improvements I saw at just one event, what others have you noticed, and what suggestions would you make?

Sorry, folks, that I haven't posted here in a WHILE; illness got in the way.  I have returned, however!  (with a now three-year-old ostomy... yeah, that happened).

Anyway, I'll be cross-posting to - and with permission from the Accessibiliity Porters FROM - the Accessibility Porter FB group for my Kingdom:).  Info, tips, questions, thoughts, all are welcome.  And if you're a friend or family member of a SCAdian who's disabled in some way - mental, physical, visible or invisible, all are important - you are definitely welcome too!

So, here in the East, we have Crown Tourney coming this Saturday.  This will be my and Milord's first event in wow, a LONG while.  Oh yes, I've been to events with illness issues before - I currently have two lupus flares going and that was the case at events in college - and my last event was using my wheelchair for distance (at a barely accessible camping site, lol, that was some experience).  But, the colostomy puts a new wrinkle on things.  For one, of course, I've had to pretty drastically change my diet (I pine for salads, which I adore, but which my digestive system will no longer tolerate).  We thankfully know the lord in charge of dayboard (he's from our Shire*G*), and he posted a pretty-digestible list, so I'm good there.  Have worked hard on things like walking with a cane again - I've done that cycle sooo many times - and sitting up for longer periods - In case you don't know, having to have a number of intestinal surgeries requires a lot of healing inside and out, including the very large scars, and your core which your body uses for balance takes a huge hit meantime:(.  I only just got back to being able to do yoga this past June!  Soo, my current sitting ability is about five hours, ROUGHLY the amount of time I'll be up Saturday (the current Shire Herald is picking us up around 7am).  Nervous?  You bet.  All sorts of things could go wrong, though at the same time I'm - well, mentally, since I can't jump anymore - jumping up and down: I'M GOING TO CROWN!  I'M GOING TO CROWN!! (lol)

with all that in mind, here ar some travel tips:

http://www.ostomy.org/Ostomy_Travel_Tips.html

https://www.mobilityworks.com/blog/10-accessible-travel-tips/?utm_source=Facebook&utm_medium=boosted&utm_content=10-accessible-travel-tips&utm_campaign=Facebook+Blogs+CD

at your service
Lady Brigit of Longwood (herald/bard)

Today I discovered a wonderful site for yoga: http://www.yogaempowered.com/ I mean, fantastic. I listened to the author's recent podcast and it was a Compassion Meditation, and afterwards felt - I don't know, very emotional, both exhiliarated and moved to tears at the same time. Lol I suppose I could meditate on my meditation but that's a little recursive... I think I'll just let it process. Wow though.

I was watching tv today and saw an ad for Flexpen (for people with diabetes). It reminded me of when I was in college doing my thesis on how people deal with disability, and one of the women I interviewed said she tested her blood wherever she had to, even if it meant in the cafeteria. My thesis advisors were horrified by this idea, that it was "so unhygenic" and so on -- and you know what? Those commercials have a man saying how he used to have to explain what he was doing at the dinner table, or somewhere else. Now, ten years after my thesis, I wonder how my advisors would feel these days about it. Just a thought.

It made me wonder again about showing a person's disability, and/or trying to "pass." With my own illness, a lot of it is "hidden", as in you can't tell I'm particularly ill if I don't have a rash. But then again, I do often use a cane, and I wear splints on my legs sometimes, and then I feel self-conscious. I worry about what it looks like.

I think the worst for me, personally, was trying to go to SCA events with a wheelchair. All of a sudden, there was the freaked-out reaction from a lot of friends of mine, both former and present, as in "what HAPPENED?? ARE YOU OK?" and over and over I had to reassure them no, it's only sometimes and for long distances. I haven't for the moment been to an event in a couple years for various reasons, but that's one of the things I dread happening again. I feel much more comfortable with "hidden illness" than the very obvious things, like a chair, you see. I doubt that's uncommon, either.

It's difficult learning how to live with a disability, even now. We aren't hard-wired to automatically adapt to a change like that, whether you just found out you have diabetes or you lost a leg, like a friend of mine did recently. Interestingly enough, the stuffs that are around to help people, like more comfortable splints and wheelchairs, easier-to-use blood test kits or insulin pumps, more snazzy asthma inhalers, can only help to a certain degree. Because you still have to get through the psychological aspects of it: in the end, you need to learn to be comfortable with going out with an illness or disability (sometimes both), regardless of to what degree the visibility of it is.

What do you do? Do you feel comfortable showing people your disabilitis? Do you feel ok going to an event in a wheelchair, or do you back off till you are at your absolute best and can pass well enough as a healthy person? And what are the consequences of it, whatever you choose?

Well, some of you know I spent some of my time gaming these days:)  (for various reasons)  Anyway, I discovered a new resource for people with disabilities, that looks very good.  http://www.disaboom.com/adaptive-sports-and-rec?utm_source=adbrite&utm_medium=cpv&utm_campaign=Sports  Hey, maybe someday I'll be able to camp again!

at your service
Lady Brigit of Longwood

Hi guys

I'm sorry I haven't posted in awhile; life has been nutty around here.  But anyway, I was reminded this morn of something I was going to post about this summer:  namely Going Out in Summer!

This has been an especially nasty summer in many parts of this country.  I'm not going to blame it on global warming; there have been summers as bad and worse in past decades (apparently here in Worcester, for instance, this summer has STILL not broken the record for heat)! 

However, it has been bad all the same.

I daresay you know these, but here's the generic summer notices:

1)DO NOT FORGET SUNSCREEN WHEN GOING OUT.  Spring was pretty wet, and then we got -- this.  Heat, heat, heat.  Which means we're bound to wear less clothing when venturing outside...  Keep in mind that even on cloudy days, the UV index will still be going.  And ultraviolet rays are what you're trying to avoid.

2)Slow it down, especially on extra-hot days... yes, sure this is the time for going out and having fun when you can, historically, but don't overdo it.  I've had heat exhaustion myself years ago; not fun.  http://www.medicinenet.com/heat_exhaustion/article.htm in case you aren't sure.

3)DO NOT chug water.  Yes, it's good for you, but like everything drink water in moderation, because if you don't it can destroy your electrolytes and actually give you dehydration.  A lot of runners collapse every year from dehydration after drinking too much water -- substitute gatorade, alternate with juice, because both of those will replenish electrolytes.  And actually, munching on something salty every so often will help quelch that thirsty feeling too.  (I am actually not kidding).  However, long as you keep uo a balance of fluids, it shouldn't be an issue:  http://www.medicinenet.com/dehydration/article.htm

4)Be CAREFUL about going outside.  There've been many days this summer so far with heat warnings in the Northeast alone; I know in the central part of the country it's been even more dangerously high.  So think carefully, especially if your illness/disability is severe, but in general you should.

Ok those are the general warning things.  I know as for me, I've stayed mostly indoors since the last heat wave -- for me somewhere around 79 is getting too hot, and those days when humidity's added into the picture are worse!  Before that, though, I was doing my regular careful summer routine.  This year I've gone back to sitting on the porch sometimes, when it isn't too bad outside, and I've learned that it's possible to get out during even the hotter days if you go outside at dawn or dusk when the weather's cooler. 

But yeah, heat's generally my enemy in summertime.  I long for the thunderstorms; I think there haven't been enough of those this year (not for me at least).   Heat just scares me in a way cold weather doesn't at all.

I hope you guys are playing safely, and any other thoughts let us all know!

at your service
Lady Brigit of Longwood
Bardic Guildmistress Shire of Quintavia

(some of this is xposted from my own LJ)...

I've started in -- um, sometime in this month it started going off and on -- to a state of blankness/functional blankness, as I call the two. The absolute blank state is one I really dislike, because it tends to bring things like trouble moving and speaking. Regular old blankness I don't like much better, because it's full of confusion and man do I get easily confused then. Functional blankness -- where I am right now -- is a bit better, though editing my work is impossible, writing has to be as highly patterned as the rest of my life must be at such times.

I need to remind myself of stuff I can do while blank, or while functionally blank. I used to have a little list by the bed, got rid of it because Brain was doing so well. I'm upset writing this, because of fear of what could happen -- at the same time I think it could be helpful to others.

When functionally blank:

1)housework
2)gaming -- but NO SPELLCASTING OR CREATURES WITH LIGHTS (which includes higher levels of Spore)
3)heraldic consult
4)Internal Letter of Intent
5)sewing
6)embroidery
7)yoga
8)Critters/Baen edits for others
9)walk (accompanied)
10)stream-of-consciousness writing

Note that almost all the physical creative stuff is very organized, patterned; I need patterns at this point.

When blank:

1)watch cartoons,or movies with animation -- one of my favorites for this period appears to be this kid's show that teaches Chinese
2)extremely basic housework (like dishes)
3)embroidery
4)yoga
5)walk (ACCOMPANIED)
6)very basic gaming, absolutely nothing with flashing lights... but it's something I can focus on
7)drawing

There's a much tighter focus of stuff I can do at this point; I get much more easily confused than when functionally blank. (that's why I call it "functionally", you see).

I can't really read in large amounts at this time, not even when functionally blank; I lose track of chapters and sometimes paragraphs (the latter is when I'm actually blank and therefore just shouldn't read).

I don't tend to have a lot of emotion once I've entered the full state of blankness; right now I have some. I can very slightly feel bothered by what's going on. And well, I'm happy I've gotten at least this amount done.

I belong to an LJ group for people with lupus, and today the subject of invisibility came up, which I realized I'd only slightly touched upon here. I know we've members with all kinds of illnesses and disabilities, so I'm going to only start with invisible ones and plan to do something for more obvious disabilities later on in the coming months:)

Anyway...

As was remarked a few months ago in here, autism is one such illness/disability you don't always see so people don't always figure something is wrong with you or a loved one. There are stereotypes for all illnesses and disabilities in fact and we've all heard them, from the vacand-staring low-functional person with autism to the person with osteoporosis who constantly breaks bones (neither is always true). I remember a couple years ago when I still needed a wheelchair for a good amount of the time, and went to an event with my then boyfriend who is now my husband -- we ran into a friend of mine who went wide-eyed upon seeing me, gasping "Oh my God, what happened??" Which made me feel very weird when later on I needed the chair less than earlier, despite the fact I'd explained to the best of my ability that no, I didn't need it all the time.

There are scores and scores of illnesses and disabilities like that, and most of them tend to waffle in and out of visibility levels -- when they're at their most visible is when the general public seems most comfortable with them, because then people can quantify their experiences, then there's something tangible. Nurses and doctors are notorious about this kind of thing; I can recall a horrific experience maybe a decade ago when I went into the ER with a rapidly-progressing flare of petecchia, when I had to spend the night screaming at the doctor on call to treat me, while he in turn insisted "there's no way anyone can be in that much pain that fast." All because he couldn't really see the illness progressing faster than a speeding bullet.

So what does this have to do with the SCA? Tons.

1) First of all, we need to let our various Accessibility Porters know we're there. We need to be out there even when our illnesses and disabilities are not, to better help our various Accessibility Porters know what would help us. If they can't see what is going on with us, then they might not know how best to help. I say "we" even though I by no means "us versus them"!

2) Next, we need to be out there and advocating for ourselves as much as we feel comfortable, so that our friends and sometimes family understand what's up with the illnesses and disabilities that affect us. This is very important in such a large group as the SCA -- don't we pride ourselves on diversity anyway? If someone knows we've got diabetes, they're less liable to look shocked if we need a snack at a random time in the afternoon. If someone knows we've got a form of autism, they might explain things in a different way or take a little more time with a question.

3) Third, since we deal by and large with events in a different way than some folks, we need to educate about what we have. I remember getting into huge arguments with my father when I was younger, about going to an event or other not long after or before I was due for chemo. His reasoning was that I "might lose it any time," and mine was "well, I need to live -- when do I go out, then?" After a while, I drew up a list that I still have of stuff to bring to this or that kind of event, and generally made sure to have someone with me. I'm different now and so is my illness, so the event decision and prep might change, but my point is I was getting the point across to him the best way I could.


The best thing you can do is to educate others, so that they understand about what you have, guys. I encourage you to post as much information as you feel comfortable posting on your own pages and blogs, to educate yourselves as much as you can to keep up to date with whatever's going on in the medical world regarding this or that illness, and to post in here about what you or a loved one has. Learn to live with what you or they have, and to seek out a cure if one is feasible -- but learn to live with it too, because that helps others learn to live with it.