Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.

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Vertigoing

I’m on leave from work right now.  This is for two reasons.  Primarily, last week I started having vertigo.  We’re not talking “a little dizzy” or off kilter, although I have that too.  We’re talking move my head and everything goes violently spinning fast fast fast.  I have a nice collection of bruises after a week of this crap.  That’s because even if I hold really really still, I still have this general “rocking” sensation and it’s making my already rather uncoordinated self into a wrecking ball.  Bathroom mirror?  Check.  Window sill?  Check.  Coffee table?  Check, check, check.  I’ve hit them all this week.

The second reason I am on leave is my experience at work having tried to deal with a new/acute and difficult symptom was the onset of the gastroparesis last year.  Last year, I stayed working through it – through days of nausea and vomitting before I knew what was up and how to modify my diet to at least lessen the symptoms.  I took time off for medical appointments, I had to come in late and leave early a lot, I had quite a few sick days.  I made mistakes, notably on my time card, because I was dragged down horribly by the illness and because there was just so much sick time to keep track of.  And weird sick time.  .3 hours lost here, 1.8 hours lost there.  And I got in a heap of trouble when my boss decided that a doctor’s appointment she had previously approved time off for was a day she needed me in the office.

So this time, I decided to cut myself a little slack, to accept that I am really not well, and to just take time off to see doctors and feel better, or learn to cope with a new reality.  Jeeez I hope this isn’t a new reality.

I have quite objective symptoms here too.  Not just the bruises and the subjective sensation of spinning.  I have some pretty intense nystagmus.  I’m up and typing only by holding very very still and even then, I’m going to start feeling too much motion sickness to stay here looking at the flickering computer screen for much longer.  Nystagmus is an involuntary movement of your eyes, I think it’s compensatory for the sensation of spinning/rotation.  You can’t control it.  It just happens.  And mine looks like I have doll eyes and someone shook me HARD.  From what I can tell, the pattern is peripheral vertigo, which is a good thing in the grand scheme of things.  Peripheral meaning something with my ears rather than something with my brain.  But I do get some vertigo with migraines, so that’s in the running too.  A week long migraine?  I hope not.  Vertigo is hard to nail down and from what I read, tough to treat.  So today I have an appointment with a neurologist at a balance clinic near me.  Please let this not be a waste of time.  And not a new trick.

Last night

Bad days these days.  Bad stuff at work since April 3.  I may not be employed much longer.  I almost passed out Saturday night.  At least I had a day to recover, this is what I think now when things like this happen.  Not “oh no my weekend is ruined”.  Nah.  That ship has sailed.  I had a rough night last night.  I fell asleep at 10:00 and woke up early, sure it was at least 4:30 AM but it was 12:14 AM.  An hour later, I fell back asleep but had horrible dreams.  So sometimes I write, I don’t know that I’d call it poetry because that sounds pretty lofty.  It’s more abstract prose.  It helps sometimes when what is going on is hard to talk about.

Last night was an April night.

From school, I remember April is rain.  March is kites.  May is weddings, or flowers…

Last night was an April night and the rain fell and the wind rattled the door

which was shut, just not tight.  All night, too loose these days, it rattled around in its frame.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens.

I wanted to swat them off, they hurt so much like needles in my hands when I tried to remove their teeth and claws from me but I didn’t want to crush them.  I was so worried I would crush them, and I  cried out but there was no help.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens I might crush and there was no help.

I woke up screaming.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

guts for garters

That is one of those phrases that is, if you stop and think about it, quite awful.  It is also one that pops into my head when my guts start spasming.  As they are now.  What prompted today’s trick?  It could be that I ate breakfast (how dare I?!).  Apparently that is still forbidden, eating before 11:00 AM.  It could be work stress.  I just was put on notice yesterday that the departmental staff appreciation dinner is in June (a very ill timed day in June) and that we are ALL expected to go.

Go and do what?  Go and watch other people eat while my window of being able to eat anything trickles away?  Go and stay out and up late on a Monday, the start of a week and a particular Monday that happens to be the day before a conference I have to go to half-way across the state?  Go and not drink but watch other people drink and get drunk, and socialize with each other but not with me  because I’ve been judged to be not a team player?

Golly.  Why not.

So my guts are in an uproar.  And so a work at home day has turned into a day on the couch.  I refuse to feel bad about this.  As soon as I finish this post (while I wait for my yummy magnesium powder drink to cool off enough to gulp down), I’m changing into my jammies, rounding up my kitties, and flopping on the couch with a heating pad and some netflix.  There’s my employee appreciation.  And they can have my guts for garters, for all the good it’ll do them.

no, thank you

I am not good at saying no.  I like to think I am, but truthfully, I am not.  I have discovered this as I have gotten sicker.  I suppose I should have noticed it way back when my blood sugar and endometriosis were my biggest problems.  Specifically, the blood sugar.  I have passed out more times than I’d like in public due to not saying “No, I don’t want to keep walking around looking for a place where EVERYONE wants to eat.  I need to eat now, you all can stand out here and debate it but I’m ducking into this convenience store and buying a snack….”  There were a few times in my mid twenties when I tried this, always inelegantly.  And that is another example of being bad at saying “no”, doing it but doing it badly.

That’s, unfortunately, still where I’m at.  My health problems mean I have to say “no” alot.  These days, I often preemptively decline by avoiding situations which I suspect would lead to a whole bucket full of poorly executed “no”s or worse, going alongs and ending up with hell to pay health-wise.  This gives me the reputation as someone who does not WANT to, rather than someone who cannot.  I’m not sure there’d be a hell of a lot more understanding for me if it was the latter, but I can tell you there is zero for the former.

E.g., my boss sent out an email yesterday letting the office know about a food discount event going on at a local touristy landmark.  Local as in normal healthy people could walk there, wander around, and walk back without it destroying their day or week.  Not local enough for me.  And not something I think I can do.  Walking there and back is one thing, but add in the wandering around a food court full of stuff I  can’t eat anyhow during my lunch break, and if I choose to bring my own food so I don’t bottom out bloodsugar-wise, I will reduce my stamina but a significant amount due to having to lug the extra weight around while I walk and wander.  So this is something that seems like a clear “hell no” but I am reluctant to reply and say that.  I guess I’d like to better understand her point in inviting me.  I’ve discussed these limits with her, it’s come up in the context of work related social events that my boss’ boss’ boss holds periodically throughout the semester.  Does my boss think that my reluctance to attend those big boss events is based in something other than physical limitations, and does she therefore think that I’m like some faker debutante waiting for just the right invite to get off my ass and flounce off gleefully and spiritedly?  Or is she just being polite in inviting her big fat crippled worker along to this particular event?  Knowing which would help me figure out how to say “no”, with some grace and dignity.

way up north

I have something like a flu right now.  I say something like and not just “the flu” because while it feels very much like the flu (sore throat, fever, aches, headache, a bit of nausea) it feels like the flu at about 20%.  Now keep in mind, I have a quite recent memory of a very bad flu that left me completely unable to get out of bed for a solid week.  When I say this is 20% as bad as that, know that 20% is still plenty awful.  It started Tuesday morning.  This is the week before classes start.  And this week, my supervisor and coworker had decided that we’d all go on a field trip way up north to the Great New England Wilderness to give a day long mini-conference.  I cannot miss this conference.  Had I been involved at all in the planning, I would have pointed out that flu season and three days before classes start is perhaps not an ideal time for such an endeavor.  I was not involved in the planning.

So I’ve known about it for a while.  I made my plans and tried to take some solace in the fact that next week, I’d have two work at home days.  These work at home days were so crucial, more so since next week Mr. Patient is going out of town Wednesday through Saturday for a conference.  I had planned on taking those days as my work at home days and then one as a vacation so I wouldn’t be stuck getting in and out of Ye Olde Historic Northeastern City on my own.  The energy, time, and expense that this costs me is significant, it’s enough to derail me for weeks.

And then my boss dropped a bomb.  She’s going on vacation next week so my work at home days are suspended.  “Yeah, I’m gonna need you to go ahead and come in every day that week…” I found out right before Christmas break.

Fuck.

To recap:  By going way up north today, I’m being asked to do an exceptionally physically difficult thing today on even less reserve than normal (i.e. flu-like illness that’s gone on for 4 days now with no sign of relenting), then to do an exceptionally physically difficult thing all week next week.  This is a recipe for hospitalization in my book.  I am left wondering if my boss really just does not get it or if she gets it but waives it when it’s inconvenient for her.

lock out

I recently posted about the accessible door to my building being locked for an event.  I have since found that the security guards in my building had started locking the door routinely in the evening.  That is, the building is still open, services in the building are still accessible for anyone who doesn’t need that door, they are just not accessible for anyone else because the guards locked them out.

Why?  I asked.  Of course I did.  The guard told me “They told us to start locking it to save energy, but now that I know you need it I won’t lock it until I see you leave.”

Um…..no.  So I wrote to the building manager, who initially thought I was saying the accessible door was locked when the building was locked (?!) but said he would look into it once I explained that I meant only the accessible door was locked during operation hours.  A few days later, I checked back in. I was told that the building had no such policy but that one of the guards had proposed that they start doing locking the only accessible entrance to the building after the guards noticed that “too many non-disabled people were using that door….” and they wanted to save energy.

Savor that for a moment.  Let it sink in.

This isn’t the first time I’ve seen accessible come up against “environmental”.  In the summer, the powers that be at this same building decided they would set the air conditioning system to less cool “to save energy” and would shut it off at 5:00 because “no one is in the building then in the summer”.  This was sent out just after an email about employee summer hours, where you can opt to work late 4 days a week then have the 5th day off.  So much for no one in the building after 5:00.  The air conditioning email was peppered with environmental rhetoric, but it was clear that this was about money.

I’ve encountered it more casually too, a fellow grad student once chastised me for taking “the lazy box” (elevator) instead of the stairs on a day when I was in so much pain and so dizzy that I had barely made it in to school.  I guess that one wasn’t so much about environmentalism, but about fitness. Both appeals (to environment, to fitness) involve people assuming some higher ground to justify the ignorant and marginalizing behavior.  Both involve people making groundless and hurtful assumptions about other people’s abilities and motivations.  They are similar in that they are both justifications for discriminating against people with mobility impairments.  And while people have the right to hold their ignorant views, they don’t have the right to impose them on everyone.  They don’t have the right to lock the fucking door.

“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

recognition

My employer recently held an employee recognition event.  Notice that it’s not “appreciation”.  That isn’t directly relevant to this story, but I thought I’d mention it because it struck me as darkly humorous initially and a little more so after the event itself.  “Come on down to employee recognition!  See people you barely know get recognized for having worked here for a damned long time” went the gist of the many emails I got about it.  It was in my building, so  I thought it might be something I could go to and sit awkwardly at (see “awkward pumpkin painting”) and put in my face time at events.  Because it’s been required of me that I go to events.  It was put in writing even, back last spring.  It’s never been rescinded in writing, so although I find it burdensome (if not downright impossible) to go to most things and although I don’t know of another employee who has a written requirement to attend ALL events and functions, I’m honestly just not ready to sue.  So I try to go, when I can.  I assume if I don’t, I’ll get passed by for a raise again, seen as a poor team player, you know, all that.

But yesterday was busy.  We’re down a staff member in my office and while we do have a temp, we’ve still divided up some of the permanent position’s work among the permanent staff.  So I have other responsibilities and we’re heading into a bit of a busy time for me.  And we’re now interviewing (finally!) for the open job, and the interview schedule is messing up my schedule a bit.  I usually work from home Tuesdays and Thursdays but this past week and next I’m in all over the place.  So yesterday, despite the emails we had all gotten inviting us to recognize other employee’s recognition, I ended up working straight into the afternoon without giving this event another thought.  Until I went out for a break, at a time that I later realized was about an hour before the event started.  On my way back into the building, noticed they’d locked the accessible entrance.  “That’s odd,” I thought.  But then they had locked it the night before too.  The night before, it was late and I figured they just screwed up and locked the wrong door.  See, the front of my building has two doors.  A revolving door (not accessible) and an accessible, normal door.  The back of my building has a door too.  A non-accessible door due to it being up a flight of stairs from street level and having no button press-opener.  To get to the non-accessible back door, you take the elevator to the building’s second floor.  To get to the accessible front door, you go to the first floor.  Got it?  Ok, back to last night.

After encountering the locked accessible door again last night, and having to wait until no one was coming through the revolving door to use it (I don’t move fast enough for some people and have been clipped in these doors before, so I’ve stopped using them)…I thought “When I’m leaving tonight, I’ll go out on the first floor and ask the security guard if this locking the accessible door is a new thing.  If it is, I’ll drop a line to the building manager to let them know that’s not ok.  They’re pretty good about fixing things like this.”  Then I went back to my office and worked.

It turned out I worked well through the event without realizing it.  On my way out of the building, as the elevator neared the lower floors, I heard a lot of noise coming through the doors.  They opened on the second floor, which deposits you on a balcony/mezzanine level that looks out over the lobby and the accessible entrance, and I saw a big fancy looking event going on, people filling the lobby, little cocktail tables, music.  Ah, right.  The employee event.  “Ok,” I thought, “not going out that way then.  And I guess I know why that door was locked tonight.”  Making a note to follow up on the whole locked door thing,  I made my way out to the back, inaccessible door.  Still, I believed I had a choice in this.  I didn’t need the accessible door yesterday, so I chose to go out the back.  I was wrong, it turned out.  Because it turned out that even if I had needed it, I couldn’t have used the accessible entrance to my building to get out last night.

The security guard who was stationed at the back entrance was the regular.  He’s chatty.  We’ve chatted while I’m waiting for Mr. Patient to pick me up on cold nights when I don’t want to wait outside, or on nights when I’m feeling to bad to stand and wait.  The security guard was very animated last night.  He told me that they had shut down the front entrance of the building “without telling anyone!  They’re just sending people back here” he said, incredulous, “and those people are pissed!” he added.  He told me people had been “yelling in my face all night” because of the inconvenience of having to find their way to the back entrance to the building.  “One woman was freaking out because they shut off elevator access to the first floor, the elevator went down and the door wouldn’t open so she came out here and was screaming ‘what the hell!?  I was stuck in the elevator!'” (I doubt very much that she was screaming.  This is a young man in his twenties.  To him, any woman who is angry and verbal is likely seen as “screaming”, so I took it as a cultural hyperbole meant to convey the intensity of her emotional state).

Meanwhile, I’m thinking “that totally could’ve been me”.  “Uh, yeah, what about people with disabilities?” I asked him.

“Whaddya mean?” he said.

“I mean what if someone with a wheelchair or a brace or a walker wanted to get in…or out of the building tonight?  What are they supposed to do?”  He shrugged and gestured to the doors and the stairs that lay just beyond them.  “You’re kidding me, no plan?”

“Nope.  I guess carry them?” he said laughing.

I was pissed off.  I was personally pissed off because there are days when I HAVE to use the accessible entrance to get in and out of my building.  If was just a matter of them locking the door but with security there, and it was one of those days, I could ask to have it unlocked.  But they turned off the elevator.  No way to get down there even.

As I was in the car and going past the front entrance of the building, I saw that there was a cop standing in front of the accessible door, arms folded across his chest, looking imposing.  I suppose he was the one who was turning people away who were approaching the entrance from the street.  Man, it’s a good thing I didn’t know he was out there.  I have such authority issues, and I was so pissed.  I’d have been over to him in a flash, asking him to explain what the hell someone in a wheelchair was supposed to do.  Cops LOVE that kind of attitude, women “screaming” in their faces and what not.  Like I said, good thing I didn’t know he was there until I was safely separated from him by the car door, mechanical motion, and the busy street traffic.

I was pissed off on principle too.  I have seen people in wheelchairs and scooters in my building.  I know that they would have been left stranded, either on the sidewalk trying to get in or (possibly worse, I think) on the second floor without a way out.  I had troubling dreams last night about needing to use a guide dog and no one believing that I needed the dog.  I woke up a few hours after falling asleep, remembered the end of the day and the door thing, and was pissed off all over again.

So, not employee appreciation, recognition.  But apparently not even recognition for the disabled employees.