Maybe I will be compared to Jon Sarkin, but with a worse brain injury (acquired savant syndrome). We both had strokes in the cerebellum of the brain. I don't paint, though. I write.
I
like this video because he describes that he was bending over to get a
golf tee. I was bending over to get garbage off the floor in my car. I had an
accident earlier and the car would have to go in the shop.
I was very close to death. What this woman went through will have to be included.
"Far too often, [vegetative] patients ... are given up for gone, left to
languish in nursing homes where no one bothers with physical therapy or
even to check for glimmers of regained consciousness."It goes on, "That’s at odds with a growing body of research showing that many
patients with no outward signs of awareness retain some degree of
consciousness." http://www.wired.com/wiredscience/2013/02/searching-for-consciousness/
I don't feel like I am "languishing". At times I will get angry and frustrated that growth is slow. That means I am still progressing. I obviously am. The first seven years went by before anyone heard from me, Stroke Connection magazine p. 9.
__________________________
A rose didn't struggle to grow where it wasn't supposed to.
Savant syndrome can be caused by a brain injury. This is the acquired form.
My brain injury was a stroke. "Stroke" is specifically named in the video.
I got to wondering...just how much of this "savant syndrome" did I already have?
I played the above (Hungarian Rhapsody by Franz Liszt) at my first piano recital. I was 5 years old. I was already hearing the word "prodigy." So congenital or acquired savant syndrome becomes a question. I was in gifted classes growing up. I left high school when I was 16 years old. I had a Bachelor's degree when I was 19.
It was off to work then. Forget school. Real life beckoned. I got my M.A. while working two part-time jobs. I moved and had my first child. It had been full-time work and my children until now.
That stopped when I was hospitalized. I actually decided to use these other skills you see when I got out of the hospital. Namely it was just the memory and ability to learn at that time.
The writing thing that you see now has evolved to this. My writing is due to my ability to learn. So I wonder how much is acquired? It's not even there yet of diagnosing savant syndrome. Medical records still have me as unconscious...and that's a battle! I don't even know if savant syndrome is the proper disorder.
(Just because savant syndrome never occurred so low before, doesn't mean it can't now. Medicine has advanced.)
What happens if I'm given Savant Syndrome? Well...it means I'm conscious, which is important to me. It also gives hope to the tons of brain injury survivors and their families. I got a winning lottery ticket. There is one! So often brain injury survivors are told there is no hope. Me having Savant Syndrome makes this not true.
The person who does this will be fighting a big issue sometimes referred to as NEUROLOGICAL NIHILISM "A neurological nihilism—a sense that treatment for many brain problems was ineffective or even unwarranted—had taken hold, and it spread through our culture, even stunting our overall view of human nature. Since the brain could not change, human nature, which emerges from it, seemed necessarily fixed and unalterable as well." http://www.normandoidge.com/?page_id=1639 This issue is big. It doesn't affect a few countries, but the whole world.
I see the countries in my blog stats. It's not just a few. There are many. There are countries I never heard of. The issue of me not being conscious is global. "Come to Spain," not said in that way, but I'm too busy waving my American flag. (Actually, there was a doctor in Spain. His broken English gave that message.) It's too risky for me to move to another country.
There is a local issue tied to this. A bit ago, a woman with a brain injury caused by a medical condition, had her feeding tube removed. She died. It held lots of controversy. I've been stuck on this one a while. Then it hit me the other day...apply the same thinking we do to late-term abortion. This woman's tube was removed rather late in the game. It was highly controversial . I look at old videos and question her level of consciousness. Like late-term abortion rules, this would still be controversial, but what happened to her wouldn't have happened. I noticed a hole in her neck. Removal from ventilator early on would have been better. Time limits will have to be developed as not all situations involve a ventilator.
As it is now, the current ruling can be applied to me. I'm obviously not vegetative anymore. This is what happens when the word "persistent" is changed to "permanent." My lack of consciousness persisted, but it wasn't permanently gone. Since the word was changed, I am now permanently without consciousness. This ruling is also in part responsible for my avoidance of hospitals. I'm not going somewhere that might end my life. I find this funny because I was e-mailed explaining that I am in a coma.
Now we go on to Savant Syndrome, Acquired type. "Savant syndrome is a rare but spectacular condition in which persons with developmental disabilities, including but not limited to autism, or other central nervous system (CNS) disorders or disease have some spectacular “islands of genius” that stand in jarring juxtaposition to overall limitations." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/ Sounds like me. I wrote this paper, yet I am so disabled I should be in a coma. If you were under the impression that this disorder was autistic only, it does state, "or other central nervous system (CNS) disorders." A brain injury is this. The acquired type of savant syndrome can occur after a brain injury.
That paper goes on, "Typically the skills occur in five general areas—music, art, calendar calculating, mathematics or mechanical/visual-spatial skills." Music could have been if I was able to hold an instrument. My grandmother was a piano teacher. As a baby she would hold me on her lap and sit at the piano. Formal lessons most likely started when I was 4, but I was already advanced. I played in my first piano recital when I was 5. I played daily until I was 9 years old. I moved and saw my grandmother once a week. Children can lose interest and I did. When I was 16. I started piano again, but not as strict, as I was a teenager with ideas. When 16, right before 17, I left high school and started college I taught myself guitar when 18. I also graduated from college https://myspace.com/angelar70/post/activity_profile_366221284_dc708415bae048fd93b651b12b20bdf9/comments
Writing can be a form of art-literary art. I use it as a form of communication. That's one reason there is so much. I will be creative. That's where the art comes in. I don't think about that, though.
It is possible that I just have superpowers. The video below is a man diagnosed with Savant Syndrome, Acquired. His very first sentence, "I don't know how to say Godly moment, but it was one of those moments where you are starting to question what's going on." His injury was from a swimming pool accident. Again, a brain injury not only gives hope but wins the lottery.
Instead of superpowers, I say there must be a reason.
I
left the hospital as "semi-vegetative" so I remain "semi-vegetative."
What is that? I looked. There's no such thing. I'm only guessing, but
the term was coined to describe a high functioning vegetative person.
The only difference between "semi-vegetative" and MCS (Minimally
Conscious State) I can think of is that "semi-vegetative" starts as vegetative.
Someone can't recover from being vegetative. This is what allows some people to be terminated. This happened in a high profile case.
That case
is one reason why I left medical facilities. (I've said many times I am doing a
medical independent living. I got out rather early, but I knew how to use
medical supply companies. I was probably expected to die soon and this situation now wouldn't have occurred.) The feeding tube is why I contacted my local
ACLU. It wasn't protected while I was in care. The ACLU in Florida represented a vegetative person there. I wanted to keep my right to eat.
No
one factored savant syndrome happening in PVS (Persistent Vegetative
State), or just "vegetative" as above. I most likely have this (Savant Syndrome, acquired form). The result has been a slow
progression to consciousness. Also, there have been physical
changes which I document in photos and video. You can't go from
vegetative to semi-vegetative as I have and you can see why. Although I
could still fit the definition physically, I don't mentally. It would
have to go PVS to MCS. This then allows recovery of consciousness. If
not, this whole thing was written by a vegetable.
As for my
physical body..."vegetables" are not invested in. Therefor I do the best
I can to provide therapy, as my therapy skills revolve around the infant. I push to a stand
and my "R"s sound less like "W"s.
The way it stands now, I am not conscious. I started as vegetative, and remain that way. In the eyes of the law I have not recovered. I have been not conscious for a long time.
Besides "What the Hell happened?" her injury is a brain injury.
So, what happened with me? This is just a guess.
I really don't think there ever was PVS, http://www.ncbi.nlm.nih.gov/pubmed/8664760 I was probably MCS with low vision and labeled as PVS. As I have become more conscious it looks miraculous. I most likely had the central auditory agnosia described in https://www.youtube.com/watch?v=nPq3Qtjwsi8 plus a severe vision problem. (My mother had to present a LARGE written letter?) I would have been deemed PVS just because of that initial brain scan. Rewiring hadn't happened yet. Of course it looked vegetative.
Some conditions are difficult to diagnose.
Most likely, my brain lobes weren't dead. The wiring was dead and the lobes couldn't do anything. "The
nerve fibers from the cells were severed, but the cells themselves
remained intact." Nerve cells that have not died can form new
connections. What appeared dead wasn't. Rewiring was needed. http://braininjuryknow.blogspot.com/2013/04/getting-there.html
I do credit Posit Science and their program InSight with seeing as well as I do, but it is still with primarily one eye. I am no longer blind in the other eye, but it is weak. When typing this, I still squint and I quite often close my right eye, the weak eye. It would have been blindness due to a lack of rewiring. Posit Science's program rewired my brain. It did not perform a miracle.
Progress has been slow.VERY slow. Imagine you have a 365 page book. You are only allowed one page a day. It will take a year to get through that book. Now you have a shelf of books. That's going to take a few years. A whole bookcase? That's the rest of your life. My weak side may be doing much more in ten years. I still have a lot of books.
His "injury" was an AVM bleed like I had. Mine was just worse.
The head trauma still happened. Acquired Savant Syndrome needs to be looked at. The 'lots of knowledge' has always been there. This statement gives rise to thoughts about Acquired Savant Syndrome. Knowledge is there but it is now processed differently. I'd also say there is more and it includes things I wouldn't know. There's also an amazing recovery. "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ This is just more reason.
Why isn't this disorder recognized? It offers plasticity. That's needed. Why is plasticity here? How do we get it? Can't tell you. Since this disorder isn't recognized, no one will ever know either. Hey, I'm not conscious. So I didn't tell you that.
AUDITORY AGNOSIA 3/11/2015
Dr. Jill Bolte-Taylor unknowingly describes auditory agnosia in a stroke. At 12:55, "My colleague says to me 'Wo wo wo wo wo'."
Hers resolved, or rewired, quickly. I was in this state a while, maybe a few months. It's hard for me to tell, as I had no concept of time during that period, and no records were kept, because it's not known what to look for. It definitely was the entire coma (5 weeks) and for some time after I opened my eyes. It could be anywhere from a few days to a few weeks.
I have stated I heard in coma, but it's not words that stand out in my mind. It's an alarm. The ventilator had an alarm and this going off is what I remember. Talking to a person would still be important. The sound of the voice, if not, the words, would be understood. Some may understand words. This is only my experience.
When
I was little, I remember playing superheroes with my cousins. A cape
would be made for me from a small blanket and a large safety pin used
for cloth diapers.
I've grown up and got my super powers.
________________________________________
I'm not conscious because somebody says so...but I am. Think about it, though....Is there a veryrare disorder caused by a brain injury that causes a person to do amazing things?
"There are hundreds of thousands of head injuries every year, but only a small handful of acquired savants." So this is rare. A person with savant syndrome would be conscious. All the other extraordinary things in my recovery would also be here.
Nobody thought I'd come out of a coma. I opened my eyes. How about being able to move? That's been slow but I'm doing it. I don't fly, yet.
I talk. I started making sounds...eventually words. Those words would become sentences. It has been slow. Hey, though, you don't get super powers over night.
I write. It seems understandable. It's so understandable I can take most complex ideas and break them down. I write everyday, so this keeps increasing in showing my potential.
My knowledge is there...and some. I don't hide it. I give it away. Those who need it take it. My super powers are coming. Like most super heroes, I choose to use my powers for good, not evil.
People
don't understand when I say I'm not conscious. There is conscious and
unconscious. Then there is a third category- vegetative. I had a brain
injury, then surgery, and then a coma. When I opened my eyes, I was
classified PVS, persistent vegetative state. I did not talk and stared
off into space. At the last hospital I was in I was put with all the
"semi-vegetative" patients. This mental state is eyes open but not conscious.
(Sounds like a zombie.) Obviously you are reading this, and can see I
have gained back mental function.
A person usually dies before they can
get better in this state. This happened to me so long ago, and I eventually did get better (very slow and I did not die).
Problem now is this condition was made permanent. So I am permanently
not conscious.
Acquired savant
syndrome is caused by a brain injury and is very rare. This can't be
confirmed in me as I am not conscious. Savants are in such great need,
yet politics interferes with this, too. I can't be studied until I am
conscious. This "story" is #123. Yes, there is a massive amount already.
I manage to type all of this with one finger. Again, this would be
like a savant. Not studying sounds like "cutting off one's nose to spite the
face."
http://en.wikipedia.org/wiki/Cutting_off_the_nose_to_spite_the_face
Recently
an experience was "debunked,"
http://www.theatlanticwire.com/entertainment/2013/07/proof-heaven-author-debunked/66772/
To each his own and the freedom of speech. Experiences are experienced
by a single person. I wouldn't want to be the one who comes along and
says there is something wrong with what you experienced. You are
basically saying there is something wrong with the person. I can only
attest to my own experience. I don't want to ruin a person's understanding of their self. That could be detrimental.
I would say I am conscious. I have been all along, even when I couldn't move. I would
also say I am doing extraordinary things. That is not the case, though.
A letter was even sent to Social Security back in 2003 by a doctor,
http://thoughtfulveg.blogspot.com/2012/11/competent.html They deemed me
still to be vegetative, but I could handle my own money. I couldn't talk
then. I talk now. I'm still vegetative. I live on my own. I'm still
vegetative. I write these. I'm still vegetative. I somehow managed to
get custody of my children and not be conscious. It's funny a not
conscious person can follow those rules. I'm still vegetative.
I
invite "debunkers" to look at my case. Problems will be found with
it...but not with me. Problems shouldn't be found with my experience. Oh, I may have spelling or grammar errors on stories. I may
have some of the biology/neurology or law wrong. If it's real bad I
can be a weenie and say, "What do you expect from a not conscious
person?" That is the problem. I am not responsible for what I do or say. I am vegetative.
"Limbo" is a place between Heaven and Hell in Catholicism. It might be a reference to the book Proof of Heaven. "Limbo" is also a game.
I decided to look more into this disorder.
"Savant syndrome is a
rare, but extraordinary, condition in which persons with serious mental
disabilities, including autistic disorder, have some ‘island of genius’ which
stands in marked, incongruous contrast to overall handicap." This can happen
after a brain injury, "however, ‘acquired’ savant skills can also appear, when
none were previously present, in neurotypical individuals following brain
injury." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Being female, this here caught my eye, "Reports of female savants
continue to be relatively few." It goes on to say,"Males outnumber females by an approximate 6:1 ratio in
savant syndrome." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Not only is this rare in rare, but I am female, making this even
more rare. Here's
something to think about, "Savant syndrome, both in the congenital and acquired
types, provides compelling evidence of remarkable brain plasticity. Indeed,
brain plasticity will be a central aspect of all neuroscience research in the
decades ahead. Until fairly recently, there has been what Doidge (2007), in his book The brain that changes
itself, calls ‘neurologic nihilism’. This was a generally pessimistic view
of the ability of neuronal tissue to regenerate and rewire itself in the face of
injury or disease." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Am I a culmination of medicine and life
experiences? Brain plasticity plays a major role.
I don't really fit into the areas of savant skills.
"Considering all the abilities in the human repertoire, it is interesting that
savant skills generally narrow to five general categories: music,
art, calendar calculating; mathematics, and
mechanical or spatial skills." [Close to this. I took out
examples and non-pertinent phrases.] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ The closest you could get is saying writing
is an art form. I've done many of these pieces. There are well
over a 100 posts between my 2 blogs. [around 400 now] Could it be computers in general? I've lost track of all the
accounts I have. Before signing up for something I will first do a password
recovery. There's no sense in making a new account. Computers are too new and
therefor not included in savant syndrome skills. This was interesting to me,
"Other skills have been reported less often, including: prodigious language
(poly-glot) facility; unusual sensory discrimination in smell, touch or vision
including synaesthesia; perfect appreciation of passing time without benefit of
a clock; and outstanding knowledge in specific fields such as
neurophysiology." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ It's no secret that I have a knowledge of neurology. This
entire paper would be a reflection of that. "Think of all those miles and miles
of myelin sheath Ms. Ronson had to laboriously re-knit to heal and reconnect her
severely damaged brain," is also neurological.
http://spiritualscientific.com/DrMorseBlog/2010/11/09/angela-ronson-part-3-how-our-brain-is-connected-to-the-universe/
I don't know how I did that. The person with savant syndrome lacks
purpose. Something I have. "Cognitive skills, logical skills, and analytical
skills are absent in savants." http://beatsme.hubpages.com/hub/Savant-Syndrome
That's something I do. This neuro stuff is hard to understand and I make it more
understandable. That means I analyze it. If I am
given savant syndrome, then I am conscious. This has to be considered. It's a strange Catch-22. I don't know how possible this is, seeing that it is so closely tied to politics. What is the purpose of keeping me not conscious anyway? Does it mean someone will have to work if I am? Not being conscious means to me I am just a slave to this brain injury.
I WANT acquired savant syndrome. I would like to be conscious. I want ASS.
