Two things...

During the trip to my father's funeral, two things about my current condition came to light for me ... at least are now ever present on my mind: Accessibility and Auditory Processing.

The more that I need accessibility measures, the more I have noticed: 1) "accessible" places are few and far between and 2)  even "accessible" places are not all that accessible.

I have written of this before, my first thoughts along these lines being handicapped parking places.  For one, I have found that few retail places have more than the minimum requirement for handicapped places.  At my last job, we did not even have the minimum.  And the staff from the Secret Service training center, who shared our building for most of my tenure there, regularly used the single handicapped spot as a place to set up tables for their outdoor training activities.  I finally advocated for the landlord to address the latter activity and then researched the required spaces for the building and asked that they be marked off.  My advocacy did not go over well with either my bosses or the landlord.

I did find it interesting that the landlord came to speak to me, told me that he was happy to comply, and announced that he was pleased to announce that he would be offering more than the minimum spaces.  In the end, though, in my tenure there, the parking lot was never more than approximately half full, he actually did not even meet the minimum requirements.  Instead, he tried to minimize loss of regular parking by coupling access for two spaces into one slot, but then did not allow for the required access width in adjacent spots.  He also reassigned the original handicapped spot as normal parking, making the closest spot to the door fair game for anyone.

But what I first noticed about handicapped parking spaces was the fact that, in the DC metropolitan area at least, most of the snow plows used the handicapped spaces as a convenient spot in which to pile up the snow.  Not only were the handicapped parking spaces then not available during the snow, but they were the last spots of the parking lot to become available as the snow melted.

Because of my mother's interior design business, I first learned of universal design before I needed any accessible measures.  Within universal design is the concept that a space is available for use for all ages and myriad physical capabilities.  Universal design is a growing business at the moment with more and more of our population wishing to age-in-place rather than move to residential homes.  With remodeling and new construction projects, my mother would talk with her clients about leaving open the possibility to age-in-place by having features such as seamless transitions in flooring, levered handles, touch plate switches, varied counter heights, pull-out storage, walk-in showers/tubs, and multi-stage lighting in task areas.

In the hotel accessible rooms, there were touch plate switches, but the outlets and switches were not at a height accessible by wheelchairs.  The layouts were not ones that would accommodate much maneuvering in a wheelchair.  While there were grab bars in the showers, there were not ones adjacent to the toilets, nor were the toilets appropriate height.  In the newly renovated room, there was no slip proof surface immediately upon entering (which made for tenuous walking coming in from the snow) the laminate-floored room and there were rugs next to the bed that were trip hazards.  Also in that room, the hot and cold water in the tub/shower were mislabeled.

But what stood out to me was the surface heights.

In rooms designed to sleep four people, there was only one luggage rack.  While luggage could be put on top of the room safe, its top was less than two feet off the floor.  There were dresser drawers, but they, too, were rather low.  I also am fairly sure there was not a single surface beneath which a wheelchair could fit so that someone might work.  In fact, there were few surfaces in all three rooms that were of a height that did not make the arthritis in my lower back scream with agony trying to bend over them for any length of time.  Until this trip, I did not realize just how much I have taken to doing tasks at spaces/tops where I do not have to bend over at all.

I found myself sitting on the bed to tend to things, but sitting unaided is also an agony for me.  I have to have something supporting me from behind, as one has in a chair.  I can ... and do ... find myself sitting down unaided to work.  And I will do so for long periods of time, caught up in whatever it is that I am doing.  But the moment I move it is highly difficult to stifle a scream and the pain in my lower and upper most portions of my spine lingers for far, far too long.  I only sit these days because I forget that I should not do so.  Ever.

In any case, until this visit, I did not realize how much I have restricted activity in my own home to places I find high enough to tackle tasks without pain.  In many ways, I think this is one of the reasons why I do so much lounging in the GREEN chair.  I even fold laundry there!

The second enlightenment actually came through my best friend.

While we were driving and driving and driving and driving in the car, I pulled out my iPhone and played one of my playlists for her.  I wanted to sing the silly songs to avoid the things that I was thinking and feeling.  I rather happily sang my way through a set not understanding how much my distraction was hurting my friend.

You see, I listen to music with the treble turned all the way up, the bass turned all the way down, and a bit loudly.  That is the way I can hear the songs.  Until she gently told me she could not bear another song at those settings, I never considered that my adjustments might be hurtful to another person.  But it was her disbelief in my not understanding there was anything amiss with my music settings that hit me ... like the proverbial punch in the stomach.

Bettina lightly mentioned how one of her friends is learning about auditory processing problems.  Her child is currently seeing an audiologist.  Bettina noted that she did not think my seeing one would be helpful, given the nature of why my hearing is off, but she suggested ... in an utterly unspoken fashion ... that I might want to consider just how off my hearing could be.

[Oh, has Bettina honed her speaking-gently-to-Myrtle skill!]

I have written recently (I think) about how, with all the online television and movie watching I have been doing, I look up a synopsis of what I am to watch and read through it both before and during the watching.  I need the guidance to comprehend the stories to which I am listening.  I also have begun to watch something a second time before moving on to something else.

During Advent, one of the evening prayer services had a homily by a guest pastor.  I heard not a single word he said.  To me, it was as if I was listening to an episode of Charlie Brown and that unintelligible person was speaking.  I was with Sandra, and she said there was a problem with the microphone, but it did not seem as if she heard nothing, as I did.  It seemed that she had a problem hearing, too.  I wonder if she understood that I heard nothing.  

I know I have written how I cannot hear the melody line in organ music and thus have not learned any of the hymns sung during service ... even for the ones with six or more verses.  In fact, aside from when I am listening to things at home or on my iPhone, I discern few words in most music even if I might hear a bit of the melody.  And I know that I have noted that I learn music best now if it is sung a cappella by a male voice ... mostly only if I hear it that way.  This is such a vast change for one who used to learn music completely by ear and who could harmonize with most of what she heard, at least in part.  A Grand Canyon kind of change, if you will.

Thinking on Bettina's unvoiced suggestion, the pieces of my hearing problems started fitting into a new picture for me.  I mean, I know that my last auditory evoked potential was abnormal and that my last hearing test showed a loss.  At the time, I simply did not want to think about what that meant.  I mean, if it is wonky nerves, what could anyone do?  Nothing helps the blurred or double vision spells I have.  But not understanding how distorted my music can sound to another was a shock.  And it made me wonder if my hearing problems are a larger a part of the comprehension problems I have than I understood (pun intended).

I have noticed in the past few months, but not written about, that I now find it rather difficult to follow sermons.  I like, very much, that one of my pastors writes out his sermons and will send them to me if I remember to ask.  [I wish I remembered more.]  I can then take the written version and re-listen to the sermon because they are now being posted to the church's website.

Note-taking used to be a highly honed skill of mine. In fact, I would give seminars to high-school seniors on college prep that included teaching my own method of taking notes.  It involves using symbols instead of letter or numbers to create notes that have a hierarchal nature.  This enhances listening comprehension as the note-taker makes decisions about what he/she is recording.  However, if I try to take notes, I miss anything that is spoken whilst I am writing.  In fact, if I actually find myself thinking about what I am hearing, I miss whole chunks.  Oh, has my brain changed!

While parts of me can still talk in an erudite fashion, most of me needs to have discussions filled with repetition and peppered with simple statements.  And I need for the other person to write things down or send me follow-up notes if I am to remember what is said.  I speak of remembering as a problem more often than understanding, but the latter is equally a problem as the former.  I just mask it more.  I pretend more.  I deny more.

Even here, where a blog entry might have taken a half an hour or perhaps a whole one in the past, I now find myself spending a half a day or more (sometimes much more) trying to write what I want to say. This one has been four days in the writing.  In a way, it is one of the reasons why I have grown more and more reticent to respond to things on Facebook even though I ache ... deeply ... to be engaged in any sort of thinking discussions.

For me, the work of crafting a message has become so darned laborious.  I struggle to write, which exhausts me and discourages me.  I become distracted, which confuses me and makes me feels as if I should abandon the attempt.  I note these things and despair.  Perhaps a good comparison might be asking an ice skater to perform her routine on ice without skates.  It can be done ... but not as quickly or easily as with them.  What skater would even want to do so?

And the truth is that I have really only just begun to grieve the changes in my brain, to absorb all that I have lost and am losing.  To be able to face that ever-widening chasm.

The funeral trip was difficult in so very many ways, most of which I am not sure I can write about and really have no where to speak them.  But these two things, these two observations, have remained uppermost on my mind. The former because of its representation of how much physical freedom I have lost and the latter because I wonder if auditory processing problems are affecting far, far more of my life than I have acknowledged ... even to myself.


I am yours, Lord.  Save me!