This video is where they are, and this here is where I am.
This is ridiculous.
I'm still vegetative! I don't know what to do next. I've contacted the
government, on their forms..."Regrettably, the matters you raise in your email
are not within our jurisdiction" is what one office says,
http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html
I made it so all could see. Contacting CMS, the Centers for Medicare & Medicaid Service, was just as bad but not so eloquently worded. I've gotten more interest from the private
sector, but I am just "followed." I guess they are waiting to see what
happens.
I
communicate, although it's said I can't. I do this by hitting one key at a
time on a computer keyboard to spell a word. It's fast enough now to be called typing with one finger. I am able to put the words
together to form sentences. The sentences
are now stories, and those are getting much longer,
http://thoughtfulveg.blogspot.com/2013/06/how-do-you-communicate.html
Writing gets better with time. I started with blinking for letters. I
could only do this with my mother as the time to see if I could
communicate had expired. Obviously I could communicate. I just wasn't fast enough
for timelines. This is what says I can't communicate and is still being
used.
I initially got speech therapy and nothing was probably
expected. That speech therapist was shocked when I started making
sounds. Hence though, my insurance capped out! I switched to the government and got
nothing. (I was vegetative and vegetative gets nothing.) I taught myself. It has taken years to get up to this one finger. (It would go faster if I was able-bodied to give therapy and had the proper equipment. Physical therapy is affected the most.)
"Fear
of the feeding tube being
removed"...yes, I had this. Way back when I left the hospital, I set up a
Twitter account. When I was able to (at that time Twitter's cap of 140
characters was fitting), I messaged the ACLU. I still have what they
contacted me with:
16 Jun 2011 Is your question regarding the Terry Schiavo case? That wasn't something our ACLU Affiliate worked on, to my knowledge.
16 Jun 2011
Followed you, so you can DM back. Looked at the brief from 2004; it was @ACLUFL's case. If you have a legal matter, see: http://aclunc.org/faq
You know it's important when they get involved. They protect my feeding tube. I still have one and will continue to have one for a while. I feel safer knowing they are there.
I
don't have that fear anymore of having my feeding tube removed. When I first left the hospital, fears
revolved around my physical well-being. Feeding tube, losing
consciousness, and being placed in a facility were primary
concerns. Concern turned to family next. I regained custody of my
children. They still had high school. I lost them when they started
elementary. I may not have been conscious in the eyes of the state, but
the law saw differently.
Now that my children graduated it's time to set things right. I am conscious. I
do not walk, that is the most noticeable...but my posture is slowly
changing. (This is now going on 11 years.)
I was just sitting up here after being bed-ridden.
Now I can independently push to a stand.
I still have one foot that turns in. The other has
already straightened out. I typed this. I used the index finger of my
left hand. I use accessibility features on the computer. I no longer
have my hands splinted. My right has been slower. It is now doing what
the other did. (It didn't move back then.) My right eye is no longer patched. I can see with it, but like services, the unconscious don't need vision, either. Speech is still hard to
listen to, but it is mostly understood.
I
still have a feeding tube. I do not fully swallow. Cognitive skills are
amazing! I wrote this! (I earlier wrote in here that losing consciousness was a
concern. Well, after all these years, I did. You know where I ended up? I
went to the E.R. Everything was okay and I had a conversation with
medical personnel. Medical terminology was used. Those words come easy.)
The cognition needs to be studied, but I'm not conscious. A not
conscious person isn't studied for cognition.
Right now, there's a very smart
unconscious person writing up a storm! She doesn't really know what to do next.
When I say I'm like Rip van Winkle... I've been asleep for years. Actually I'm listed as having my eyes open, but I'm not conscious. I'm sleep-walking I guess. I
left the hospital as "semi-vegetative" so I remain "semi-vegetative."
A
while ago I was referred to a specialist for pneumonia I think. This doctor got my file and
read it before he met me. He probably wondered what I was doing out of
the hospital. When my appointment came, all he could do is ask "What
happened?" and he stared at me. I'm not the person in the medical reports.
I don't
remember what I said to him, but it was probably medical and philosophical. It
was probably theoretical, too. I don't know how I do that, but I do. All of it would be with textbook jargon and terms.
Okay,
so there's this person who was in a coma. It's obvious she isn't
anymore. To top it off she's conversing with doctors and is
knowledgeable about some difficult theories and concepts. This is
normal? (Normal in the sense of average. I don't need lectures on
"normal." I know this isn't normal. Does anyone else?)
Okay, lets say I'm conscious. What does this mean? I guess it means I'm not "semi-vegetative." Did I suddenly become conscious? When did that happen? Does "semi-vegetative" have some component of consciousness? If so, what makes "semi-vegetative" different from Minimally Conscious State? If you are a vegetable are you always a vegetable?
I
don't really communicate with speech. I do have some, and it has gotten
much better. I'm sure it will continue to improve, as I use it every
day.
People have asked if they could
talk to me. There's no guarantee on my speech, though. On a good day
I'm understood. On a bad day, I'm not. I've reserved using the phone to
close family and friends only. It's been better that I use the written
word. So I use communication like this.
The following video shows where I'm at now. I do not get speech therapy. I did in the beginning until my insurance ran out. Now I have Medicare and I don't get therapy. There have been a few sessions over the years, but nothing to have gotten me this far. What you see is what I have done.