Thursday, February 20, 2014

I Am Conscious

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,  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,  

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:

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.

No comments:

Post a Comment