Time In A Bottle

Health Activist Prompt:

Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?


For people to get the real picture of what is going on with me, they would definitely have to get some of my lovely "B's."  You know the ones.  B's on sticks, B's on checkerboards.  B's floating on my wall.  If I have to keep looking at the letter B, it would make sense that some B's would go into the capsule to give a sense of what my recovery has been about.

My talking timer would be another good addition to the capsule.  It has been a good way to get me to do my VOR (vestibulo-ocular reflex) exercises.  Having the talking feature is like having a coach.  It counts down the seconds in various intervals, keeping me on track.  So, just when I'm starting to sway, it reminds me, "30 seconds, 10 seconds (it skips 20 for some reason), 9, 8, 7, 6, 5, 4. 3. 2. 1 and then the obnoxious noise of my choice plays.  What could be more motivating than that? (hey, my world is small!).

I know I'd stick my Mp3 player in there.  Yes, I'm low-tech...no ipod.  Music will get me happy, though, when nothing else can.  And my choice of songs, very telling.  Some directly from my heart.  Some just full of anger so I can scream my frustration away.  Some so very different from the life I have, the life I didn't plan on.

To really give a picture of me, this laptop would have to go in, too.  I don't know how I could have gotten through this without the Internet.  It has provided me with socialization and support, an outlet for my frustration, a means of expression, a way of knowing I am not alone.  Through the 'net I have found out so much about my condition, how to get help.  I learn just about every day.

Pictures of my family would round out my capsule.  My girls and my partner mean everything to me.  My pets, too; they are with me every moment of every day.

I hope that people would see my capsule and first know how much I value my family.  I don't breathe without their oxygen in mind.  My heart beats for them.

Then, I hope they would know how hard I worked at trying to be "normal."  It wasn't easy.  But I am NOT lazy and this IS real and it's been a long, tiring journey.  Maybe putting together some of the pieces to my puzzle, they'd get the whole picture of who I am.

sensitivity

yesterday, I worked a lot on VOR exercises (vestibulo-ocular reflex) in therapy.  they are, basically, the ones to stimulate the vestibular system in order for me to do everyday things.  for example, walking down a hallway while turning my head to simulate, well, walking anywhere while turning my head, but this is exaggerated and done over and over again.  I think I walked down the same hallway yesterday 20 times looking up, down, side-to-side and diagonally.  some of the motions made me more dizzy than others.  usually the up-and-down seems to get me.


I read in someone else's blog about something called cervical vertigo.  basically, this is vertigo caused by a compression of the nerves in your neck.  it got me wondering if this is, possibly, the cause of my vertigo.  I have been in physical therapy several times before for arthritis and this can be one of the causes.  also, I seem to have vertigo more when I move my head in certain positions than in others.  I don't know.  something to keep in my back pocket...


anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion.  I do all of these pretty well, now.  it's afterward that I may or may not have a problem.  still.  but this is progress, they tell me.  I'm doing better than when I started.  my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress?  it's scary.  because then things happen like the following:


I go on the treadmill, as I have been doing for weeks.  I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me.  she has me gradually work up to the speed she wants me to walk at.  1.3, no problem.  1.5, trotting along.  1.7 this is cake.  then she hits 1.9.  this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle.  immediately, I go into "overload mode."  my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting.  I start holding my breath involuntarily.  I am still walking the treadmill, but I start wondering if I am going to pass out right there.  my normal therapist sees this and asks if I am all right.  I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right."  she reminds me to breathe and focus and comes over to lower the speed on the treadmill.  as soon as she does, the noise goes away and my body immediately relaxes.  an assistant is with her.  Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise.  before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice.  What?


Stacy had  to go back to work with her patient a moment, and the assistant had gone with her.  I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy).  did she actually say that?  it was just a bizarre question...

when Stacy came back to check on me, I had to tell her, "I'm better now.  the sound apparently set me off or something.  she," making crazy eyes at the assistant, "thought I was afraid of the noise."  


while Stacy and Lauren (the therapist I am working with) talked about how the machine probably needs to be serviced, and that's where the noise came from, I didn't get the validation I had hoped for, like, "wow, what a crazy-assed, stupid, ignorant, uninformed, jerky, dumbass response to someone who has neurological responses to vertigo! I'm sorry you had to deal with that.  I'll let her know."  or something to that effect.


maybe I'm a little sensitive.  


maybe it's just that from working with and for people my whole life, I am hyper-aware of what comes out of my mouth at all times when dealing with people at all times.  I remember that they all have a story, a life, feelings, a family.  I don't know why, at this stage of my life, I am still shocked and amazed when other people don't.


and this was nothing.  seriously, nothing.  I know it was nothing.  she was just an idiot.  ok, not an idiot, she just was clueless.  


but, it's the tip of something much, much bigger that I have been holding onto and I am damned near ready to burst.


another post...perhaps another blog...