Thursday, January 28, 2016

A Brief History of My Condition

I give a brief synopsis of my history.
Initially I was unconscious. No question there my medical records state it. Well, when I opened my eyes, I was supposedly still unconscious. I was diagnosed as that. I was deemed vegetative (PVS, not MCS). PVS is Persistent Vegetative State and later becomes "Permanent" if recovery doesn't shortly happen. This was me.

I slowly got better. "She's gonna die, anyways," was the thought.  I managed to get out of a hospital setting. I did up my diagnosis to "semi-vegetative." It was still vegetative, though.
Not only did I not die, but you are reading my account.

The local newspaper did a story, The pictures are at the hospital that sent me home. I was not typing at that point. I sent the man next to me in those top photos a message, but that was difficult. You can read I was a vegetable.

I keep telling people I am getting better. Only a few believe me. Someone is impressed with my speech improvement and makes some study videos. A year later I made my own.

A year after that I published an update.

I think it's pretty obvious I am not in a coma- an open eye one. It is explained to me that I am, though, in this letter. I also think it's obvious I am not vegetative. This vegetable talks and makes videos. Get it straight or be laughed at! I'm just fine. I have no cognitive deficits. My mind is the opposite and dances around you.

UPDATED  10/31/2016

Sunday, January 10, 2016

It's Not My Birthday

I should have died 6 years ago by government calculations. They calculated wrong. I did not die.

I had something in my head. It wasn't a tumor, because that's tissue. Mine was blood, a tangle of blood vessels. It was called an AVM (Arteriovenous Malformation). "There are several different approaches. The idea is to get rid of the tangle. Surgeons can open up the brain and actually cut out the problem area. Another approach is radio-surgery, which uses gamma rays to eliminate the tangle. Or doctors can thread a small tube through the arteries and inject a glue-like substance that closes off the blood vessels." Sometimes none of those procedures can be done if the AVM is in an area that can't be touched. That was mine. It couldn't be touched. That was the thought, anyway.

The government refused surgery. They would treat me with medication. I knew this would only slow the growth of this thing and I would die. Stanford University thought they might be able to remove it. They did.

I had each one of those above mentioned procedures done. It was experimental. It worked, though.

The government still has something in my head that should have burst and killed me 6 years ago. There isn't. There is nothing miraculous about me living longer than thought. That was just plain stupidity to deny the surgery ever happened.

The miracle is the recovery. To go from severe to moderate has been done by a few children I've seen. (I worked with neurologically involved children.) So far I have done this. I believe going severe to mild is remarkable. I'm now going to mild.

To top it off, I can explain the math and the error of government's ways. Providing the surgery may not have been possible for the government, but it never should have been denied that it ever even happened.

So I'm now turning -6 years old. I should have died 6 years ago. Dear government, will you please explain this to people.