Crash, Bang, Here We Go Again

When I was a kid, I was a Girl Scout who went to camp every year, and eventually I was a camp counselor.  So I know far, far more than my share of camp songs.  Matter of fact, I don’t know anyone who knows more of them than I do.  There’s a particular one that is coming to mind right now…

Crash, bang, here we go again. Here we go again, here we go again!

Crash, bang, here we go again.   Jolly good friends are we.

We laugh, we sing!  We laugh, Ha ha! We sing, tra-la!

Crash, bang, here we go again.  Jolly good friends are we.

To give you an idea what this little ditty sounds like, you have to know that there are motions done with it.  This was one of the dining hall songs.  With all the kids and staff sitting at tables except for the handful of us (staff, that is) whose duty it was to lead songs, we’d start this song.  You clap your hands on the word ‘crash’ and slam your elbows into the table on the word ‘bang’ to make a big noise.

Why is this coming up?  Well, I had one heck of a crash yesterday.  I was at a baseball game.  Now, don’t get me wrong, I suppose baseball is a fine sport, but it’s not one of my preferred sports.  I much prefer watching basketball or soccer, and back when I played, it was always soccer.  But that’s neither here nor there.  I was there because it was a service dog training day with my service dog organization.  They get tickets for us all together, and we practice working in crowds and having our dogs around loud, scary things.  For the most part, it goes off pretty smoothly, but last night, I was the exception to the rule.

See, it’s the POTS.  Not the cookware variety, but my disorder that just got diagnosed a week ago.  It was a hot day, so at first we were back in the shade, sitting flat on the cool concrete.  The sun went pretty permanently behind clouds, and it was going down, so we moved out to the benches where we could actually sit down.  We must have been out there half an hour at least when suddenly, in the middle of sharing some ice cream with the boyfriend, I wasn’t feeling so good.  In fact, I was REALLY not feeling so good.  I drank some more water and leaned against the arm of my stadium chair.  It got worse and I grabbed on to the back of the row in front of us.  And then I had two hands on the back of the row in front and my god the ground was close and I felt like I was falling fast and going to splatter against it any moment.

The boyfriend noticed when I first reached for the bench in front of us, I think.  I know he started saying something to me, but when I’m that far along, everything sounds a bit like the adults in Charlie Brown cartoons – all nonsense syllables.  One of the stadium’s EMTs noticed me slumped forwards like that with the boyfriend trying to get my attention.  I think she must have had to ask me everything two times, at least, and I’m sure I was mumbling my answers down into my chest.  I don’t know if the trainers, who were behind me, started reacting to the way I was acting; I barely remember the EMT! 

They sent for a stair chair to get me back to first aid and covered me with 4 icepacks, shoving them under my armpits, against my chest, and between my thighs.  They asked me if I could stand to get to the end of my row.  HAH!  Are you kidding, staying conscious while sitting was hard enough.  Fortunately, I was sitting in my stadium chair, so they were able to slide me down the row on it and they only had to have me stand up for a moment to get in the chair.  Once they had me up the stairs, one of the EMTs had to leave because while they’d been trying to take care of me, someone had been hit with a baseball.

It must have been an eventful night, because in the second inning, I was their 37th incident.  And this wasn’t a major league park, where you’d expect that, it was a AA game.  They stuck me and Hudson in a first aid room the size of a large closet and kept piling ice packs on me, moving them so that they sat on places like my head, or between my forearms.  You can imagine how crowded a room that size must have been, to have me and Hudson and two EMTs in there.  The boyfriend was stuck outside waiting to find out what the verdict was, but I had a feeling I knew what the answer would be – go home!  The door opened for a kid who’d scraped her knee and needed to have it cleaned up, and almost hit Hudson in the head.  The EMTs re-arranged their furniture so Hudson could squeeze in next to me, where he’d be safer.  They kept bumping the chair next to him, and because Hudson has a fear of things hitting him, that was enough to pop him up and get him trying to escape his very tight little space eeeeeeevery time.  I’m not entirely sure how long we were in there, but it FELT like a long time!

After a little longer, they managed to get my temperature down by a couple degrees and decided it was safe to send me home.  They asked me if I wanted to go home, and my first thought was that I didn’t want to get in trouble with the trainers!  Silly, when having to call ambulances is a semi-regular part of training.  Hey, I didn’t claim that I was able to think real well in that state!  They told the boyfriend to pull the car up right next to the stadium entrance and come back up, then they’d wheel me out in their wheelchair and we could go home.

So he does this.  Now, all this time I’ve been in the stair chair, which is kind of like some sort of summer folding chair but with wheels on the back feet, so it can be backed up the stairs.  So we have to transfer me to the wheelchair, and if the wheelchair is in the room, there’s no room for Hudson!  Poor boy got handed outside to the little room and be held by the EMT’s wife while they got me set up.  Because they weren’t used to handling a service dog plus a wheelchair going in and out of their little tiny elevator, I let his wife take Hudson again.

They sent me off with ice packs to keep me cold on the ride home.  My theory that I wasn’t dehydrated must have been true, because a few minutes out from the station, I REALLY had to pee!  We got off the freeway in the middle of nowhere at a stop that said they had food and fuel.  Well, one gas station didn’t have a public bathroom, and the other one, someone had locked the key in the bathroom!  Desperate, we went into a place whose sign said it was a tavern.  I figured the boyfriend could order some fries to go, so we’d at least be sort of patrons.  No dice!  He ended up buying a 6-pack of beer to take home.

I went into the ladies’ room only to discover that they didn’t have a handicapped accessible stall!  And the doors swung inwards on both of the stalls, so there was no way I was squeezing a dog in there with me.  Hudson was supposed to wait outside, but he decided he wanted to follow me, and then plonked himself down on the floor.  At least it looked clean.  I had to put the handle on his harness down flat so I could close the door, and it was juuuuust barely enough space.

Well, we made it home eventually.  I was hit hard enough that I didn’t make it to the class I was supposed to be at today.  You see, this kind of crash takes a day or two to recover from.  Don’t worry, I don’t have much planned for tomorrow – a trip to my physical therapist and maybe sending my aide out to acquire a few groceries.

One bit of good may have come out of this – the EMT and his wife would like to donate a couple of puppies out of their litter, once they have it!  I don’t know how that will work out, but if there do end up being two more service dogs (or home companion dogs, which are basically service dogs but only inside of someone’s house) because of this, well, I guess I won’t take it too hard.

And Hudson?  Well, Hudson thought it was all a grand adventure, because he got petted by the EMT and his wife, so he made new friends.

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From many small things, a bad day is made.

Today is a devil-is-in-the-details sort of day.  You know what I mean, right?  Where theoretically it all looks fine, but when you get down to it, all kinds of little things go wrong.

I woke up 15 minutes before I needed to leave for physical therapy.  That’s normally plenty, since I just toss on a pair of shorts and a tank top, cram some breakfast into me and the dog, dress the dog, and head out the door.

It wasn’t enough today.

First off, I woke up with my neck and shoulder so cramped that my shoulder was almost touching my ear.  It took me a good 5 minutes just to that worked out enough that I could manage to drive.  It hurt like hell, and I was caught between needing to get moving pronto and needing to be gentle enough that my physical therapist could still work on the muscles in my neck.

What do you do with 10 minutes to get ready?  You mutter at yourself, throw your clothing on, stumble down the stairs, dress the dog, and then realize that your keys are lost.  Crap.  5 minutes later, I discovered that the couch had eaten my keys, but not in the usual place it eats things.  I promised the dog I’d feed him when we got to physical therapy, crammed a poptart in my mouth, and scrambled out the door.

I would have been on time.

Well, if not for the workers repainting the road.  It took 45 minutes to move 1/2 mile.  The freeway was at a stand-still 1/4 of a mile before the exit, and I was baffled.  This just doesn’t happen, especially not for such a length of time.  Maybe there was a car accident, I thought.  I eventually got up to the end of the off-ramp, where they were doing the painting, and I swore a blue streak.  If they had put signs up, I could have avoided this exit and gotten off at the one before and saved myself 30 minutes at least.

So, 45 minutes late for physical therapy, I get parked, explain the electronic meter system to a guy who is staring at the pay station looking bewildered and intimidated, pay for my time and get my stub to put on my windshield, and then realize that I left the dog’s breakfast at home.  Shit!  Double shit!  Agh, my poor long-suffering Hudson.

My physical therapist is a wonderful, wonderful man.  He’s a great PT, for starters, but he’s also incredibly accomodating.  He managed to squeeze me in around another patient, letting one of his assistants supervise me doing the exercises on machines that I needed but doing all the body work himself.  That man has amazing hands.  A-freaking-mazing hands.  He manages to tease out tension with almost no pain when I or the boyfriend would put me into tears to get the same result.  We talk while he works, and among other things I brought up the fact that I miss roller coasters and was wondering if he thought it’d be safe for me to ride on them, if I wore a soft neck brace.  We talked about what kind of rides I should probably avoid (sharp lateral motions, or rougher rides like wooden coasters), but he agreed that it would probably be safe for me to ride the kind of roller coasters I like best, the big aggressive fast looping type.  Aw yeah.  Pity for the boyfriend that he’s not crazy about those, aheh.

Right.  So now it’s 2:00 when I’m finishing up instead of 1:00, because of that damn traffic jam and because it takes a little longer to be seen when you’re being squeezed in.  I feel really, really bad at this point, because the dog should have eaten at 11:30 when I got up.

So we need to head home.  On a Friday of what promises to be a scorcher of a summer weekend, I’m NOT about to risk the freeway after noon.  I drive past the onramp and feel justified by the traffic I see building up.

The only trouble is that using streets rather than freeways takes a whole lot longer.  50 minutes instead of (ideally) 25.  So by the time I get home, I’ve been driving for a total of 2 hours and 15 minutes, and I don’t take driving well.  It stiffens up my back and makes me soooore.  And oh man am I exhausted, ’cause I slept badly with my boyfriend out of town.

I get home, undress the dog, finally feed him (poor pooch!), let him out to pee, and damn it I’m awake again so I can’t even go back to sleep.

And this is the point where I find out that shit is going to hit the fan this weekend.

When my boyfriend took this out of town job for the next 3 weeks, he was told it would be Monday-Friday, that he didn’t need to be there on the weekend, and hey, the pay is great.  Well, it really is 3 1/2 weeks, because he had to go in on Thursday of this week and be there today, and for chunks of Saturday and Sunday.

Saturday and Sunday when he’s supposed to be driving me to service dog classes.  Classes I can’t miss or I risk losing Hudson.  You see, we are required to attend 6 classes during our first year.  My first year with Hudson was rough as hell healthwise – there were the months when I was having maybe-they-were-seizures, there were multiple ER trips that interfered with us getting to classes, there was my schedule being less than ideal making us miss classes, and oh yeah, there were migraines.  So I missed almost all of the opportunities to take classes.  And thus, here I am, just over a month from when we must have our classes done by, with only 2/6 done.  So I somehow have to make it to 4 classes.  And I’m dealing with POTS and aggressive summer heat.  And the service dog classes take place an hour from here.  And with the exception of the classes on the weekends, they last all damn day.

There are 2 classes that will take place in my city.  One would involve driving to 45 minutes west of my city during the early part of morning rush hour, getting on a train, riding said train for an hour, walking around the city center for 3 hours, and then riding the train an hour back out so I could get in my car and drive back into the city into the teeth of evening rush hour.  The other would involve being out at the zoo all day – a place that has virtually no air conditioning, when I’ve been fainting in the heat.  My doctor nixed the second one, and frankly doing the first would put me at serious risk of getting into a car accident from fatigue.

So the boyfriend is going to drive about 5 1/2 hours tomorrow to get me to a terrible baseball game 45 minutes from where we live because on Sunday, his required chunk of time is going to coincide with my class.  So on Sunday, I MUST be able to drive an hour there, be there for 2 hours, and then drive an hour back.  The sum of this is that I need him to drive me tomorrow so that I hopefully will be able to make the drive on Sunday.

And all of this is happening while I can’t get a signal on my phone in the house.  Texts are unreliable, and calls are unheard of.  I eventually figured out a way to fix it, but this was after hours of worry and frustration, and about 2 days of not being able to get or make calls.

I called my doctor to ask about possibly adding a medication to help with the POTS, since the gatorade was only helping under certain situations and not in others.  Well, my blood work is back, and the news isn’t good.  My thyroid is apparently very low – low enough that it could be causing some of my dizziness, fatigue, and near-fainting.  I need to start taking calcium supplements, which may be adding to the problem and could be behind the mysterious muscle cramping I’ve had lately.  And the real humdinger of the whole thing: my blood sugar is high again, and has been high every time it’s been tested in the last year.  Which means I’m probably pre-diabetic.

This is worse news than it appears at first.  For those of you who know diabetes, you see that and think that I need to ease up on the carbs and the sugar, add some exercise, and all will be well.  Here’s the thing: my diet is already pretty restricted from my IBS.  A number of the things you eat to make a more diabetic-friendly diet are things that make my IBS miserably worse: whole grains, veggies, that sort of thing.  And frankly, I’ve needed my easy to digest carbs and sugars.  On bad days or when my reflux is really bad, that’s about all that I can get into me.  On bad days, the fatigue and pain means that I eat what is ready to eat, and ready to eat foods are HORRIBLE in terms of carbs and sugar.  And exercise?  When I’ve been dizzy and near fainting just from existing?  Who ARE you kidding?!  I do my strength and flexibility exercises that I need to prevent more injuries and pain, and that’s all I can manage- no cardio, no way.

I could have dealt with one or two of these things without it making for a bad day, but in sum, they represent a really frustrating, worrying, irritating, and downright crappy day.

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Disability makes people uncomfortable

There are a great many topics we consider taboo in the workplace – religion, politics, sex (usually) – and disability definitely has to go on that list.

Because I have POTS, I’m at a risk for fainting or needing to do things that look odd like suddenly sitting or lying on the floor.  I thought it was only fair to warn my coworkers.

First I warned the legal secretary in our office, since I know her best.  She’s a lovely person, she really is, but it was clear she was uncomfortable.  I mentioned that there’s a risk of me fainting in the heat, and she started asking if it might be blood pressure issues, that sort of thing, but in the sort of tone that acknowledged that this was Not Spoken Of At Work.  I told her that on the rare occasions when I faint, I generally come around within a minute or two, and not to worry or call for help unless I was down for more than five minutes.  I managed to ease her worries by pointing out that I haven’t had a full faint in 2 years, and that the most likely thing to happen was that I’d get woozy and dizzy, and sit back down hard in my chair when I tried to stand.  She eventually got comfortable enough to make a joke about keeping the air conditioner blasting in the room where I work.

Today, I told my supervisor, the judge’s clerk.  I told him that it was possible that I’d have to do something odd like sit or lay down on the floor, and he gave me this look like I’d just dropped a frog in his lap.  I told him that it was a blood pressure problem and it got worse in the heat, so the current weather was very hard on me.  He continued looking like there was a frog squirming on his lap, and said, “Er, okay.”

Now, I was warning my coworkers so they wouldn’t panic or freak out if I did happen to faint or collapse, or sit on the floor for no apparent reason.  I hadn’t expected them to be so very uncomfortable with discussing my disability, in ways it might affect them, but boy were they!

Because we treat disability as a very taboo issue, when a person chooses to speak about it, we tend to react as if they had just stripped down to their underwear and started dancing around in the middle of the office.  While disability is indeed a very personal issue, and one that I think shouldn’t be broached without a firm relationship with the person who has the disability, it’s disconcerting to realize how much other people don’t want to deal with it.

There are reasons, of course.  If you talk to a healthy looking young person about their disability, you have to admit that there is theoretically nothing to stop anyone – including you – from becoming disabled.  You have to acknowledge that disability makes their abilities different, and many people have to struggle over the idea of whether that changes their value as people.  You are given an introduction to a different perspective on the world, especially if the person with a disability chooses to talk about some of the ways the society’s treatment of us sucks.  It’s a pretty big paradigm shift, especially if you can wrap your head around the idea that being human, and thus of value, is not dependant on having certain abilities – it is an innate quality in all of us.

But part of getting to that point is learning to listen to people talking about disability without getting the creeping feeling that somehow talking and listening to/about disability is wrong.  You have to get over the idea that disability should be hidden, shameful, embarassing, and degrading.

It’s a lot to ask a person to do.  Any time you push someone to take a closer look at their privileges and their prejudices, it’s a very uncomfortable journey for them, because they have to admit they HAVE privileges and prejudices.  And let’s face it, none of us wants to admit that we have accepted and shaped our world view around bigoted notions.

So I can understand why my coworkers are so uncomfortable when I mention that my disability might have certain affects on me while I’m in the office.  But that doesn’t make it any more comfortable for me.

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Another diagnosis to add to the pile

One of the things about living with Ehlers-Danlos Syndrome is that you don’t just live with EDS, you live with EDS and all its friends and relatives.  And my, oh my, does EDS have a lot of them.

Today, I officially got diagnosed with POTS – Postural Orthostatic Tachycardia Syndrome, which is a particular variety of dysautonomia.  To understand what POTS does, I have to give you a little bit of background biology.

Your autonomic nervous system regulates all of the involuntary parts of your body – digestion, heartbeat, heating and cooling mechanisms, so on.  Now, when you move into a more vertical position (say, from laying down to sitting, or sitting to standing), gravity has a greater affect on where your blood goes.  A certain amount pools in your lower limbs and your abdomen.  In a normal person, the veins in your body tighten slightly and your diasystolic blood pressure increases a bit, to make sure your head gets enough blood.

In someone with POTS, that increase in diasystolic pressure never happens.  In fact, blood pressure usually falls.  To make up for it, the heart starts racing (which is known as tachycardia).  The result is that you end up with dizziness, headaches, nausea (even vomiting), disorientation, fainting, near-fainting, tunnel vision…the list is really quite long.  It’s much worse in the heat, or when you’re dehydrated, or when your electrolytes are imbalanced.

This is the reason I got stuck in the bedroom in the heat wave a couple weeks ago.  It’s why I have to stay in climate-controlled places.  It’s why I always have water by my side, and have to snack on salty foods often.  It’s hurt me, it’s come close to hurting Hudson (when I nearly fell on him and squashed him).  It’s why my heart races every now and again, for no reason.  It’s why I fall back down into chairs a couple of times a day when I go to stand up.

I’ve suspected I might have this for…well, years.  It’s gotten perceptibly worse the last 3 years in a row.  Finally, I’m symptomatic enough for them to put a name on it.

Here’s the hard part of that: expecting the diagnosis doesn’t make it less upsetting.  It may seem silly.  You would think, okay, I know this is likely to be the result, so I can emotionally brace myself and it won’t swamp me nearly as badly as it would have if it was a surprise.

Well, not exactly.  The things that make a diagnosis tough don’t change just because you are expecting that diagnosis.  It doesn’t make your symptoms any less real.  It doesn’t make them any more likely to go away – quite the opposite, most of the time.  It in fact makes it clear you aren’t imagining them, which can be affirming but also means that these annoying, even upsetting things are real.

So tonight, when I’ve had something of a triumph in getting a doctor to acknowledge a set of symptoms (most of which can’t be measured) and give them a name even though the test wasn’t 100% conclusive, I’m frustrated and angry and upset.  I’m so damn tired of there being one more diagnosis, one more thing wrong with me, one addendum to the list of things to watch out for and activities I ought not to do.

I suppose when I put it that way, it makes sense, doesn’t it?

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Balancing Career and Disability (part 2 – accomodations)

Sorry it’s been so long between these Career and Disability posts. Live has been a bit out of control lately, and I’m afraid my blog has suffered a bit because of that.

So. I talked a bit about what a person has to do to balance career and disability in my first post, which you can find here.

One of the things I talked about in that post was accomodations. Since I know a lot of my readers aren’t disabled, or don’t have official accomodations, I thought I’d walk you through what the formal, legal accomodation process looks like. I’m saying ‘company’ here, but this process tends to hold true for companies and for schools, though schools are required to do a LOT more accomodating than companies are as a general rule. There are exceptions.* For the record, I’m dealing with what happens under the Americans with Disabilities Act in the United States. I’m nowhere near familiar enough with other accomodation systems to write about them, though I understand the kind of push-and-pull negotiations that I’m describing happen under them, too.

So let’s start with the basics. What’s an accomodation? An accomodation is a limitation on what you can be expected to do in either the work or school environment. It is a restructuring in some way that is supposed to make the place accessible to you in an equivalent way as it is for everyone else. Accomodations can be modifications to the structure, location, or the job itself.

As soon as you know you need an accomodation at your job – hopefully before you start work there, but ‘as soon as possible’ is important here – you go to your doctor and you get a set of restrictions written up. The restrictions say exactly what you can and can’t do – for example, for quite a while I had one that said I couldn’t lift more than 35 lbs overhead and more than 50 lbs overall, to protect my bad shoulder. I also had a restriction on how long I was to be placed in a kneeling or crouching position, to protect my knees – I think no more than 15 minutes without 5 minutes of being out of that position. In order to get an official accomodation, my experience is that these restrictions have to be very specific – it can’t just say ‘no heavy lifting’, it needs to say ‘no lifting over X weight’. They also need to say what the company needs to do to accomodate your need, for example ‘requires parking within 100 yards of her office, due to difficulty walking’. The more specific the note from the doctor is, the clearer a guideline it presents to the company you’re getting an accomodation from – an absolutely vital thing. If your note isn’t specific enough, you’ll find yourself bouncing back and forth between the company/school and your doctor. “does this cover it?” “No” “Dr, can you write a note that says X?”

Now, getting this note is not always a walk in the park. Some doctors don’t like writing for accomodations, for a variety of reasons including internalized ableism. I’ve had doctors who refuse to write notes for anything but other doctors and treatment, which made me want to pull my hair out! I’ve also had doctors who were great and worked with me and faxed several versions of the note to try to get specific enough to satisfy my employer (which was REALLY frustrating for both of us). Getting your doctor to understand why you need an accomodation can be frustrating. My current accomodations letter actually came from my neurologist, back when we thought I might have a neurological disorder in november or so of ’07 – which is to say, the doctor had no idea why I had the problems I had, nor did he have any way to verify that I needed the accomodations I outlined, but he was willing to work with me because he thought it was very important that I maintain as normal a life as possible, which meant staying in school. Fortunately, by then, I knew what accomodations letters should look like, so it only took 1 version to get what I needed carried out.

Anyhow, back to the process. So now you have your doctor’s note specifying what you’re not supposed to do.

You take it to the company. Now, the company does NOT have an absolute requirement to give all necessary accomodations. (on the other hand, a school recieving federal funds has a much stronger mandate to accomodate!) The company has to give necessary accomodations when the person can still perform the core duties of the job. Many a fight over accomodations revolve around what ‘core duties’ entail, and more than a few court cases have been fought over that very point. If a company wants to fight you on giving the accomodations, this is frequently one of the ways they will do it – by saying that if they give you the requested accomodation, you will not be fulfilling one of the necessary and important parts of the job.

In theory, the question of hiring and accomodating are different processes. Your need for accomodation is not supposed to be part of the hiring analysis; they are not supposed to consider whether they will need to bend their policies and practices to work with you. However, a great many companies use the principle I just talked about to un-hire people who their hiring process approved. I’ve come very close to having it happen to me. The company cannot revoke its job offer unless they come to the conclusion that you cannot fulfill one of the central requirements of the job, but as I already said, that’s quite a fuzzy area that is often a battleground.

The company may propose alternative accomodations that they believe will equally make the workplace accessible. Your guess is as good as mine as to whether these are actually going to be worthwhile propositions – I’ve heard it going both ways. Generally, these alternatives are a matter of monetary cost. Usually, they’re what in the law we call a ‘good faith’ effort – the company is well-intentioned and looking for ways to try to make things work well for both the company and the individual requesting an accomodation. Sometimes, though, they’re used as a way to make work impossible but try to shield the company from liability – “look, we accomodated zir**, but ze still was not able to perform the job adequately.”

So now, we’ve navigated getting the note, taking it to the company, and theoretically getting an accomodation.

Next there’s actually applying the accomodation, and this is another area where there are struggles. Your accomodation may say you have a flexible schedule, but your immediate supervisor may decide ze wants to see you 6 out of the 8 hours ze’s in the office, which really does a number on the flexibility of your schedule. Especially on something like that, if the accomodation is vague, you’re in for a fight to get it applied in the way you interpreted it. The more precise you can get the language of the accomodation (and for heaven’s sake, get it in writing!), the safer you are from this kind of problem, because then you can bring out your accomodation letter and show it to your boss. Mind you, this is definitely NOT always the case. I’ve worked places where accomodations were regarded as absolute, and if my boss asked me to do something contrary to my accomodation, all I had to say was, “I’m not allowed to lift that much” and I’d get moved to doing something else. Most people, once they have an accomodation letter, will not encounter their bosses trying to…whittle away at their accomodations. However, there are an unfortunate number of people who believe in the ableist notion that accomodations are favoritism, and thus you may get harassed by your boss or your coworkers over the very changes in your environment that make working possible for you. It’s not fair, but frankly the world is often not fair to those of us with disabilities.

The long and short of what I’m trying to say is that getting accomodations is often a big negotiated struggle. It’s not always that way; I know people who have informal, verbal agreements with their supervisors that have worked out well for them (this is particularly true for short-term things, like broken legs and shoulder surgery). But here’s the thing: if your company fails to live up to the agreed upon accomodations, an accomodation that was put together through the process I just described and documented will stand up in court, and be clear on what it means. Verbal agreements do not protect you as well, in part because there is no record of what happened, so whoever you talked to can forget or misremember what was said. As with many other things this law student has said, here again, I have to emphasize…GET IT IN WRITING!

It’s not fair that it’s such a big process to get an accomodation. We shouldn’t have to work so hard to get our employers to work with us, and some are a lot better than this. I’m trying to show what a normal, average process looks like, though, and in my experience, it looks like this.

Out of the whole thing, I find myself very grateful for the cooperative, helpful doctors I’ve had, who have been willing to write for accomodations that have let me work, stay in school, and generally live the life I want. Having your doctor on your side is one of the biggest helps you can have in this process – the other one is having a company that really wants you and is thus willing to work with what you need.

* Specifically, I know that med schools and law schools have successfully survived challenges to their scheduling and attendence policies (respectively). I am not certain why medical schools have survived the challenge, though I suspect that they were able to make the case that the kind of run-around that you go through as a med student is tradition because it’s necessary to prepare you for being a resident. I know the law schools’ attendence policies have survived because it is a requirement set up by the American Bar Association, and ABA accreditation is very important in the legal world.

** I try to use gender-neutral pronouns when I remember, because these kinds of matters affect people of all gender identifications.

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Life, plus one (service dog)

I realized the other day that while I’ve written a lot about Hudson being funny or difficult, I haven’t written a lot about…well, what everyday life with a service dog is like. Which feels kind of silly to me, since I write so much about what everyday life with a disability is like!

If any of you are coming new to my journal from this post, Hudson is my service dog, a 3 year old labradoodle who I have been with for almost a year. I actually break one of the rules our trainers set out for us – when Hudson and I are in the house, Hudson is almost never on a leash, because he’s so well behaved. With very rare exceptions (like really needing a drink or to go outside), Hudson never leaves the room I’m in, and never runs to anyone or anything, so I don’t worry about him not being leashed. Unlike most service dogs, Hudson has very little interest in the outside world, so he’s not about to run to the doorbell or run outside given the opportunity.

So here’s what a normal day looks like, living with Hudson.

I tend to kind of grumblingly wake up before I’m actually ready to get up because my bladder is demanding a trip to the bathroom. The doctors can’t decide whether it’s interstitial cystitis or functional bladder disorder, but I’ll tell you one thing for certain: it’s annoying! So I drag my grumpy butt out of bed. Hudson’s a bit of a lazy bum in the mornings too, so I have to call him several times and sometimes even poke him with my foot before he’ll hop up to accompany me to the bathroom. We drag over to the bathroom, and then drag back to the bedroom, and I go back to sleep for a while longer.

When it’s time for me to actually get up, usually Hudson’s already awake. As soon as it looks like I’m getting out of bed, he pops up excitedly and starts frisking around the narrow space between my side of the bed and my dresser. He comes up to me to get petted, but he’s too excited to stay, so he scampers back and forth, back and forth. Once in a while he gets TOO excited and whacks me with his open mouth, which ends this particular playtime.

When I get dressed, most of the time Hudson insists on smelling at least one article of my clothing. Otherwise, he mostly stays out of the way when I get dressed.

I live in a hundred plus year old house, so the halls and stairways are narrow, I send Hudson down the stairs in front of me, so we won’t foul each other up. This was something I had to learn – the stairs are theoretically just wide enough for the two of us, but he wants to go down the middle. He doesn’t want to be on the side towards the room because he’s afraid of heights, and he doesn’t like going down the wall side because he doesn’t like the feeling of being too close between me and a wall.

This summer, we put up a curtain hanging across the bottom of the stairway, to keep the livingroom air conditionering in the living room, and Hudson is still very uncertain about it. He walks veeeeerrrrrrrry slowly up to it, and waits for me to move it out of the way. The one in the kitchen doorway is, for whatever reason, less scary. That one, he just wants a big enough space open to squeeze through, and will walk right up to it before that space is opened.

Anyhow, so we get downstairs. I throw him out to do his business. Our backyard is concrete, so we have a little wood framed box of mulch for him to pee and poop on. We tried with dirt at first, but that got really icky, wheras this rubber mulch can be cleaned with a hose or by the rain, so it stays relatively clean. When he comes back in, I feed him and then get my own cereal out, then pack my lunch.

Right. So I’m dressed, we’re fed, what next? Let’s assume this is a work day.

I walk over to our front door. His gear is right next to it. No matter what kind of treats I offer him, Hudson doesn’t want to come over, because he knows that he’s going to get dressed and start ‘work’. I eventually coax him over, and once he’s there he’s pretty cooperative in getting dressed. He’ll duck when I try to put his harness over his head, but that’s the only attempt to make it more difficult for me.

Now that we’re all ready, we either get in the car (if my boyfriend is available) or go catch the trolley. Hudson likes the car, so those days are a lot less eventful. If we have to take the trolley, we walk about three times as far, which tires me out a bit. We get on the trolley and they let me pay the disabled rate, something they never allowed when I was disabled and walking with crutches. I have to ask the person in the front-left seat to move because that’s the only spot with enough room for the dog because the seats don’t have space under them for him to duck into. We ride the trolley for I guess 8 or 10 blocks, and then we get off to catch the subway.

I’ll note, at this point, that it’s inevitable that someone will comment on my dog – usually at least one person per vehicle. More often than not, they ask what he does for me, which is rather rude as effectively it asks, “Hey disabled person, what can’t you do for yourself?” There is almost always a comment on how handsome a beast my boy is, and queries about what his breed is are not uncommon. I try to be nice and friendly when responding to all these questions, because a service dog user is, in the eyes of the world, kind of an ambassador for service dog users. I’ll admit most of the time I wish they’d leave me alone just like they would do anyone else on the trolley or subway, because travelling is uncomfortable to me, and the dog is usually scared so requires a lot of my attention. They believe they have a right to my attention, and if it were only for my own sake, I’d be more willing to make it clear to them that they do not, but I represent service dog users so I have to be nice.

This branch of the subway is actually elevated on our end, so we take the elevator up, pay at the window and then walk back to the accessible gate (because harnesses are not compatible with turnstiles). I have to ask someone to open the gate for me, because it’s beastly heavy. Hudson is nervous to be up on the platform, from which you can easily see through the tracks or through the fences to the ground. He spends most of our time up here shaking, while I pet and verbally reassure and feed him treats.

Then the subway comes, and he’s scared so everything he’s doing is very abrupt and jerky (OW!). We get on, and more often than not I have to ask someone in the handicapped reserved seating to move – they almost never give up their seats without me asking, and sometimes they’re very rude about it. I get sat down, and get Hudson down as much out of the aisle as possible. He does his best to stay in the aisle as much as he can, which is of course hazardous to both him and other passengers. We continue on a bit of a tug-of-war the whole way to work, which is hard on my body and frustrating.

When I get up, he wants to bolt off the train, so he does his best to drag me along and I use his pinch collar to remind him that he’s not supposed to do that. Once again, we have to use the handicapped gate to get out, but this station isn’t accessible so I have to trudge my way up the steps to get to the surface. Ugh, I hate steps. Especially when Hudson’s wound up so he’s less help.

Hudson’s still darting and pulling, because he hasn’t calmed down yet. Because my background check hasn’t come through yet, I still have to go through the visitor’s entrance at the courthouse. The security people keep making me take an elevator all by myself, nevermind that the worst Hudson might do to anyone is sniff them. Up the elevator to my floor. The way the building is designed, I have to walk around 3 1/2 sides of it to get to my office, because the 4th side doesn’t have a through passage. Oh I hate this walk. The building is a block to each side, so it’s a long haul for me. And it’s not an accessible building – there are stairs, a few up, a few down. By the time I get to my building, I’m feeling woozy from the heat and sore as all hell from the trip in.

I put out Hudson’s rug and get us both some water, then we settle down to work, him to doze on his rug, me to read motions and petitions and research them. He pops up when I get up to move around the office for things. I eat my lunch in the office.

Around 2, we head outside for his bathroom break. My office has been very nice about it, and the security guard in the corner nearest my office will let me back in so I don’t have to do the big treck around the whole building to get back. It rains here often, and so sometimes his bathroom break gets postponed while I wait for it to stop. We walk across the street, and then across again, so we’re catty-corner from where we started, at the small park. I have him do his business in a planter so that no one is going to end up stepping in or sitting in or so on his pee or any of his poop that I can’t clean up. He usually poops at this time of day, so I take one of my bags out of his harness packs, grumble to myself as I climb into the planter, and clean up after him.

We go back to work for another three hours, and then we get to travel home.

Because we’re travelling home at 5:00 every evening, the subway is PACKED, and the crowd presses in around Hudson, which he finds uncomfortable (and I can’t blame him). It’s harder to get people to give up their seats this time of day, and I often have to point at the sign that indicates these are reserved seats to make them move. The struggle to keep Hudson out of the aisle is harder now, because the crowd puts him a little more on edge, and more important, because the aisles are so crowded with people standing.

We finally get to my station, and I breathe a sigh of relief as we get off the blasted subway. Hudson is jerking and pulling like a fiend. We get on the elevator up to the crossing to the other side, where there is an elevator to the ground. Walking across that pedestrian overpass scares the hell out of Hudson – too much ‘down’, too easy to see through the chainlink fences, on both sides, so that even if we walk down the middle he can see down.

Elevator down, finally, and then we cross the street to the trolley platform. It’s just a little island in the middle of the road with a railing on one side – no seats, no shelter. On hot days, if our timing is bad, I’ve come very close to fainting here. I lean against the railing and wait. Hudson is still anxious, and having cars and trucks and motorcycles going by on both sides of us doesn’t help matters any. I’d really like to just zone out and wait for the trolley, because I’m feeling lousy by now, but I have to stay paying attention to him and soothing him. And of course, because we’re standing there, people often want to comment on how cute my dog is and ask what he does for me, yet again.

Finally the trolley is here. This stop gets a lot of people boarding ’cause it’s the intersection between the trolley and the subway. They rush on, but they tend to be polite about giving Hudson and I enough space to board. I try to get on early so the person I depose from the front-left seat will still be able to get another seat, and no one has ever given me the slightest bit of a hard time. People who I chit-chat with on the platform occasionally stand near me to help shelter Hudson, who inevitably has part of his body out in the aisle. I do appreciate that quite a bit – he’s been kicked twice on the trolley, and I worry that he’s going to start associating the trolley with being walked into. I have to keep watch for people exiting and entering, to make sure they don’t step on him, and try to stop them with voice and outstretched hand when it looks like they will. You’d probably be surprised by how often people don’t even register the voice and hand unless I push back pretty hard, which tends to hurt me.

We finally get to our stop. Hudson’s worked up, I’m worn out and ready to collapse, but there’s still 3 2/3 blocks to walk home. I swear, it feels like these are the longest blocks in existence, as the dog jerks and pulls and I’m tired and god it’s hot…

We get home. I want to collapse, but I take off Hudson’s gear and get him a drink and let him out to pee first. Sometimes I even remember to get a drink into myself. Then I stumble up the stairs to go lay down in the bedroom, because it has the best ratio of air conditioning power to space. I usually manage to get out of my work clothes before I collapse. I stay down until my boyfriend makes dinner, usually.

The rest of the day is pretty uneventful. Sometimes we watch a movie and I spin yarn, my newest and favorite passtime. Sometimes I feel too flattened for that, or it’s too hot and our underpowered airconditioner in the living room won’t cut it, so I stay curled up in bed and read. Usually, the boyfriend either goes on his computer or plays video games then, because I’m feeling crappy enough that I need to tune out the world and fall into a book.

On work days, I usually don’t recover enough for a rousing game of chase-the-dog-around-the-livingroom, which is the only athletic play I’ve managed to get Hudson interested in at home. Work days are, for me, travel – work – travel – rest – eat – watch tv or read – sleep. It seems positively dull spelled out like that, but, well, I suppose work days are a bit dull because I don’t have the energy for them to be anything but. Work takes everything I’ve got, and at my current job, I don’t have the set-up that would enable me to work 2 days in a row.

That is, I suppose, part of the story of life with my disability more than it is life with my service dog. You have to pick and choose what you’re able to do and in what order and how. Having my service dog makes my disability matter less in some ways, but the disability will never go away and no adaptive aid or assistant is going to change that.

So there you go. An average (work) day in the life of a woman with a disability and a service dog.

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Evil summer heat, but decent people

Sorry it’s been so long since I last posted, folks. When I explain, I hope you’ll understand.

See, one of the things that often comes along with EDS is heat intolerance. I’ve heard it postulated that it’s connected to a lot of different individual changes in our systems caused by our defective collagen. For me, the heat intolerance means a couple of things.

1) If I get too hot, I faint, especially if I am standing. My ‘too hot’ is significantly lower than most people’s.

2) In addition to fainting, I sometimes collapse – I just kind of fold up involuntarily. No loss of consciousness (or only momentary loss), but my body just buckles.

3) I get dizzy, nauseated, and exhausted.

Now, the temperature at which all of these things happens lowers significantly if my hydration, salt, or blood sugar levels dip. No matter which level it happens at (1 being the most severe, 3 being the least), I feel ‘off’ for a significant period of time, up to 2-3 days. That period can be shortened by getting IV fluids, but I really, really hate getting IV needles poked into me. My veins are deep and difficult, and so it tends to hurt like hell.

Anyhow, here in my little corner of the world, we had a pretty big heat wave this week. The boyfriend was a hundred miles away by train at a 3 day interview/testing session for one of the jobs he’s applied to. To be perfectly honest, if it weren’t for my aide, I would not have gotten fed most of the nights he was away. I was in bad shape all week.

On Tuesday, I had my first day of my summer job, at the judge’s office where I worked the year before I got Hudson, but with a new supervisor. Unfortunately, I got sat in a hard wooden chair, and even my little memory foam travel pillow I took with me couldn’t save me from my back getting verrrry uncomfortable. I nearly fainted as I waited for the trolley to take me home from work, and staved off collapsing by leaning very hard against the railing at the edge of the trolley stop. That night, I ran out of one of my important pain relief medications. Without it, not only do I ache like I’m bruised and battered all over, I also can’t sleep. I didn’t fall asleep until 6:00 AM. On Wednesday, in addition to still being in bad shape from the day before, the lack of my medication was getting worse…and the heat was oppressive. I slept most of the day. On Wednesday night, my prescription was finally filled, but it takes me about 24 hours to recover from not having it for a day. Despite having slept most of the day, I slept just fine that night. I missed work Thursday because I was just in too much pain – the lack of medication and the hard seat at work on Tuesday had locked up the muscles in my back, neck, and shoulders to the point where I couldn’t even raise my hand to level with my chest or turn my head without wincing.

Friday, the boyfriend got home 4 hours earlier than we expected from his interviews. Great, right? Well, sadly between the heat and the back/neck/shoulder musclejam, I was still feeling under the weather. That evening, the heat finally broke. I was starting to feel better.

The boyfriend and I decided that it was too damn hot in the kitchen to make dinner, so we went to Taco Bell to get something to eat. We would have gone to the Arby’s that’s right around the corner, but my stomach was grumbly enough that I needed to avoid grease, and I am very unhappy going to Arby’s if I can’t get curly fries.

So we figured we’d go out for a quick jaunt, get food, and come home so I could go back to resting. We left the house at 7:15, ordered our pseudoMexican food, ate, and then…

Cue car trouble. The car won’t start. We tried to get a jump from a couple of nice guys who volunteered to help, but it didn’t get us anywhere. The boyfriend has AAA Plus, so they sent out a tech to diagnose our problem. The boyfriend suggested that I take a cab home, but well…I’m a little worried about money until the boyfriend officially lands a job, and the way cabs drive tends to hurt my back (sometimes quite badly), and I occasionally get crap about Hudson when I get into one. I decided I’d wait it out, after all, the tech was supposed to be there in 20 minutes.

If it’d been what we originally thought – a simple dead battery – the tech would have jumped us and gotten us on our way in just a few minutes.

Instead, the tech spent an hour trying to figure out what was wrong. His diagnostics computer said everything was working just fine. When we were hooked up to him via jumper cables, the car would start just fine…but within 30 seconds of removing the cables, the car would die. An hour of him charging and having us start the car and taking off the cables and listening to the car die again. I honestly am pretty upset that the guy spent an hour doing that, because frankly once he eliminated things he could find, he should have tried a couple of times and QUIT.

Why do I say that?

Because the tow truck to take us home didn’t get called until the tech gave up.

So at this point, it was 9:15. 2 hours, when I’m not in shape to begin with, is a long time to be upright. I needed to get home and lie down. The tech calls AAA, they say they’ll dispatch a tow truck.

I realized at about 9:45 that we had no idea when the tow truck would arrive. I called AAA on my phone, because we were expecting the tow truck to call us on his phone. My phone number is from the opposite side of the country, so the AAA office I got patched to? Yeah. Wrong side of the country. After an interminable wait on hold, I finally got a hold of a person, who said the truck was supposed to be there at 10:10.

Well crap. 25 minutes of waiting weighed against the discomfort I knew would happen if I got into a cab. The boyfriend has developed a very, very ‘soft’ driving style that uses gentle changes of velocity to protect me – almost completely antithetical to the lead-foot driving you get out of most cab drivers. Alright. I’ll wait another 25 minutes. What else am I going to do?

Naturally, the tow truck got hung up. It was 10:20 by the time he got there. He got the car popped up on the truck efficiently, and didn’t say anything as I stripped Hudson’s harness off so we could get him in the cab with us. I’ll admit, I had seriously feared a fight with the tow truck driver about where the dog was going to go, and with my boy’s fear of big machines, there was no way in hell I was leaving him in the car to ride on top of the truck (and to deal with getting loaded on and off the truck!)

The tow truck driver, though, was one of those unexpectedly decent people you run into now and again. A minute or so into the drive I mentioned my relief that he hadn’t hassled us over Hudson, and his response was something along the lines of being laid back about things, and besides, what was the dog going to do, chew on everything? Hudson, he said, was far better behaved than the drunks he’d get called to pick up because they called AAA and said they were having car trouble when really they were just avoiding driving home drunk. He was a very congenial fellow, and if it weren’t for the fact that the boyfriend, the dog, and I were kind of wedged together, it would have been as pleasant as being towed gets.

We had him drop the car off at the car repair shop in the closest shopping center to us. The boyfriend had offered to run home, get my car, and come pick me up, but by that time, I was so stiff from sitting that I thought a walk would do me some good. Compared to the weather we’d been having, it was a beautiful, cool evening, and besides, it was maybe 3-4 short blocks.

Except oh lord are those blocks ever long when you’ve been sitting for the best part of 3 hours. It didn’t help any that Hudson was being a bit of a butt. He’s afraid of big vehicles like trucks, and he got picked up (which he does not like) and put in one (which he did not like) and then picked up (which he does not like) to be put down. His post-fear reaction is almost always a bit of…being hyper. Which means he pulls on me and wants to go EVERYWHERE and smell EVERYTHING and is generally a handful to manage, especially for a sore, exhausted girl who has been in the heat way too long.

We got home at quarter to 11. I stumbled upstairs, wiped my icky sweaty self down with a wet wash cloth, and collapsed into bed.

It has been a long, LONG, LONG week.

And it’s not like we’re letting up. Ha. No, silly things that we are, we went off to a shop to get curtains (so we can try to close off our livingroom from the kitchen and the stairwell) and a bit of clothing for me, and then a stop for ice cream on the way home. I’m still all wobbly tonight, and rather pitifully glad that I have 2 days to get myself back in shape to go to work, because I think I’m going to need them.

Sometimes, life is just…exhausting. Well, I should say sometimes life is PARTICULARLY exhausting. When you wander around in a body with as many faulty bits as mine, every day is an exhausting day.

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