I knew every step of the way. I don't care what others said, I knew. I couldn't say anything. I had no voice. It's said vegetative people don't know. Well, not this vegetative person. I knew. My body just didn't show it.
My first word was "No." Any wonder why?
Family
was told, "She doesn't know you," and "She doesn't know you are
there." Wrong. I knew. I knew who visited and who didn't. Not only did
I know my name, where I was, what day it was, and who was president (all hospital questions.),
but I could give a short history of most subjects and explain how most
things work. Of course all of this was in my head. I had no way to get
it out.
That's why I'm happy to have this finger and a computer. I can say and be understood.
Don't say, "She doesn't remember." I do. I remember everything. All I've seen...
______________________________ _______________
The closest I could find to my situation that was on video was:
He just doesn't have the memory or awareness of the rehabilitation. I do. I'd also venture to say it's not done yet with me. Obviously it's not done if there is continued substantial progress, rehab is not done. His rehab was a few years. It's already been quite a few with me recovering skills. I'm still listed as being in a coma. Isn't this proof enough I'm not?
All I was trying to do was contact the government and tell them they were wrong. They don't want to hear it. They are dead set in their belief, and refer to me as being in a coma.
_________________________________________________
When
I first got the e-mail I was stunned. It was telling me I was in a
coma. Second, I guess this institution of the government sees fit to
communicate with persons in coma by e-mail. Some would say it's the
government at its finest.
Where
did they go wrong? Actually, it started many years before I was born. A
belief existed that humans are born with a certain number of neurons in
the brain. That's it. If you lose or damage those, they are gone
forever. "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/normandoidge.com/EXCERPT.html
The belief is wrong. I
am just a person. Sure I went a little further faster, but that doesn't
mean the rules don't apply to me. It means the wrong rules are being
applied. Listen to the video clips. Those are more like what should be
applied.
I once was in a coma. I slowly came out of that. I had a brain surgery (with a scan that shows I have a brain!). I've trekked to various facilities and homes. I've gotten better. Since the notion exists that once a brain is damaged it's damaged forever, I remain in a coma. Since brain cells were damaged in the initial bleed (I've heard 80% of my brain), I still don't have most of my brain. Old beliefs need to be re-evaluated. They just sent someone in a coma an e-mail. They better notice. I AM NOT IN A COMA.
I couldn't be reading this right. The first few sentences.... You read it.
Dear Ms. Ronson:
We are responding to your email to the National
Institute of Neurological Disorders and Stroke (NINDS) concerning
persistent vegetative state, sometimes referred to as coma.
We
are sorry to learn that you are currently in what could be considered a
"semi-vegetative" state that has significantly affected your ability to
speak, write, and perform other tasks. You explained that your
condition was expected to decline, but that you have slowly gotten
better. We can certainly understand your desire to share your blog with
others and seek advice about your case. As a biomedical research
funding agency, the NINDS cannot provide people with personal,
case-specific advice about a medical condition. However, we can provide
general information about neurological disorders and direct you to
other possible sources of assistance. If you are seeking a neurologist,
the resources in the "Additional Information" section at the end of
this message may be helpful.
The NINDS has online information
that provides an overview of coma and summarizes the Institute's
research in this field. You can access this information at the
following website: http://www.ninds.nih.gov/disorders/coma/coma.htm. The following section lists voluntary health agencies that provide services to those affected by coma: http://www.ninds.nih.gov/disorders/coma/org_coma.htm.
Such organizations often prepare newsletters with stories that inform
and inspire others who are coping with conditions such as yours. They
may be interested in learning about your experiences.
In
addition, you may wish to visit the MedlinePlus website offered by the
National Library of Medicine (NLM). The site is designed to assist
people in identifying resources that will help them with their health
concerns or questions. Resources on coma are provided at http://www.nlm.nih.gov/medlineplus/coma.html.
For
citations to research articles, you may wish to search PubMed, which
provides free access to an online bibliographic database of published
biomedical literature from the NLM. You can access PubMed at http://www.pubmed.gov.
The search strategies "coma AND review" and "persistent vegetative
state AND review" are possible starting points to find articles. Some
articles are available free of charge online; if so, the citation will
indicate that. Otherwise, to obtain copies of any articles identified
by your search, you may need the assistance of a librarian at the
nearest university or medical library. Alternatively, the NLM offers a
service called Loansome Doc that allows PubMed users to order a copy of
any article they locate in the database directly from the Internet.
Finally,
you may be interested in learning about research studies at the
National Institutes of Health (NIH) or in your area. The "NIH Clinical
Research Trials and You" website at http://www.nih.gov/health/clinicaltrials is
a good starting point. The site offers resources for people interested
in volunteering for a study, including questions to help determine the
potential risks and benefits of participating in a trial. The site
provides a link to ClinicalTrials.gov (http://www.clinicaltrials.gov/),
an NIH database that has information about federally and privately
funded clinical research studies on a wide range of diseases and
conditions. You can search the database to learn about research studies
in need of participants, as well as their location, purpose, and
criteria for patient participation. Tips for searching
ClinicalTrials.gov are provided at http://www.nih.gov/health/clinicaltrials/CTgovSearchTips.htm.
The site also includes a link to ResearchMatch, an NIH-funded registry
to help connect volunteers with researchers who are in need of study
participants: https://www.researchmatch.org/.
We hope this information is helpful.
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
ADDITIONAL INFORMATION
Finding a Specialist
Voluntary
health agencies focused on the disease or disorder that concerns you
may be able to direct you to specialists in the United States. A list
of approximately 300 national non-profit health organizations concerned
with neurological conditions can be found at this NINDS site:
http://www.ninds.nih.gov/find_people/voluntary_orgs/organizations_index.htm.
Another
option would be to visit the National Library of Medicine's MedlinePlus
website, which offers a variety of resources to help people with their
health questions. This MedlinePlus site has information about choosing a
physician or health care service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareservice.html. The following site includes links to directories or listings that may help you locate specialists: http://www.nlm.nih.gov/medlineplus/directories.html.
If you click on "Find a Neurologist," you will be prompted with a
search box that will allow you to select a particular state.
4-14-14
To begin with, they state "coma." I've known PVS (Persistent Vegetative State) is also a coma. They take the stance that my diagnosis is proper. "We are sorry" you are in a coma. Why is a person in a coma able to read? Why are they writing to someone in a coma? The letter should just start, "Dear Vegetable."
That beginning negates the whole letter. It doesn't matter what the rest says. It got off on the wrong foot.
Changing those words a bit, "Don't talk to me like I'm an idiot. I may not have a neuroscience degree, but I'm not in a coma."
(By the way, I can tell you what my phone number was when I was 5 years old.)
____________________________________
My response? It can be viewed in the style of that clip....
Don't
be sorry for me. Be sorry for u. A copy of this is being sent to
Neuroscience News. It will also be published n u can read w/ the rest of
the world.
You
take this lightly. It was taken lightly when I was severe. That was a
clue right there when I opened my eyes. That never should have
happened. At 1st, I was fooled like u, but as time goes on u can see. I
used to be severe, unable to move or talk. When I started making
sounds that should have been another clue for u. I have no brain, just
brainstem! Where was this sound coming from? 4yrs in various
hospitals...still u have no clue. I should be in a nursing home, but I
did some things n I'm not. Now u have a vegetable on the loose! I
managed to get 1 finger to move so I could type out what I want to say.
My speaking still isn't that great, but I do it. It progresses like the
rest of me. Gee, I was severe now I'm moderate. I'm working towards
mild. What comes next?
Do
the math! I was severe. I slowly gained muscle movement. I no longer
require a ventilator n now have a big hole in my neck. (Pictures speak a
thousand words n the media will love this 1.) I managed to get out of
the hospital, taught myself to type, n have gone public? Like I said
don't be sorry for me, be sorry for u. This was your opportunity n u
blew it. This has already been sent. U can't un-ring a bell once it's
rung.
I
don't seek a doctor or advice. They don't know anyway. The best advice I
got was from a retired biologist who has passed away. He said don't do
anything. So I haven't. I just keep body parts properly positioned n
I'll do exercise. Nothing invasive is done. U just
need to be aware then. I'm sure there r others who would jump at the
opportunity to research what is going on.
I do that.Actually, that’s being done to
me. I can handle that better than other brain injury patients, though. Simple
orientation is all that’s required, not a breakdown of complex theories.
Statistically, this was bound to happen.
"Far too often, 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." http://www.wired.com/2013/02/searching-for-consciousness/
I’d venture to say 1 out of
1400 people diagnosed PVS will end up regaining consciousness enough to be reclassified. I’m just
applying the figures. I’m not doing any math, so that's where I get 1400. That’s an observation
of that report. Now this is where I'm not too clear...1 of 1400 of those people would have many skills such as I do.
I
recovered this far in skill and predict there will be more attained. Keen observation of
myself and others and an understanding of developmental processes allow
me to make this prediction.
I would be doing extraordinary things, so I'm extraordinary evidence. Now let me make an extraordinary claim...PVS (Persistent Vegetative State) is a form of consciousness. It's just lower than MCS (Minimally Conscious State). Think about it...there's brain dead, PVS, and MCS. PVS is not brain death. It's not conscious enough to be minimal (MCS). It's consciousness right before death. It can get better or it can get worse, just like anything else.
UPDATE 6/20/2015
New skill of movement can be seen in my other "paralyzed" hand...
UPDATE 5/15/2017
Note that a return to consciousness does not mean a cognitive return.
First off, there's issue with "soul perfectly in tact, but can't get the words out." Isn't that aphasia? Maybe he's talking extreme. Isn't that Locked-In Syndrome (LIS)? LIS is documented. A movie was even made (subtitles are in English).
Here's
the bigger issue, though...I'm not conscious. What he says about
damaging one part of the brain happened here. My parts are not only damaged, but are dead. I was listening to a radio show once, and a doctor gave reference
to me and said "80%." So 80% of my brain was dead. No one is sure why I woke up. Well now, regarding what this person above says, I'd like
to think I still speak English.
I've previously explained what I
thought happened. Another scan of my brain will have to be done. As it
is now, I'm writing and giving commentary with enough brain to barely
stay alive.
"Two steps forward" is progression. A "step back" is a lull in development.
Long
ago in my Master's training program, there was a guest lecturer. She
was a therapist. She said when you reach a stall in development, a
plateau, you work through it. Now this was a program for early
intervention in special education. I didn't know the practice in some
physical therapy was to stop if there was a lull in attaining
developmental skills. Special education teachers can be working with the
same student for years. There may be lulls in the student's
development, but that's what makes it "special." A teacher doesn't quit
working with a student because he or she doesn't
learn.
Although development is slow, the student "gets it"
eventually, sometimes years later (the particular task worked on). Gosh, there probably was a lull at that
moment in time when started, but it wasn't forever. The same can happen in brain
injury. Prime example...me. My developmental skill progression was
slow. Sure I had a lull in development at the beginning of my brain
injury. "No Progress" is determined. I was placed with the vegetative. That is how I remain today. Years later I am writing
this. It wasn't "Wham! She can write." It's taken many years and I use
accessibility features on the computer. I was published in 2009, http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage. My accident was in 2002. There's just a lull right there in dates. I
don't know of any rehab that lasts 9 years. A special ed teacher would
last that long, though, and that is what I used to do. That's what I
did when therapy ran out. No therapist showed me how to type.
Accessibility is an area I used to cover. I've
just applied techniques to myself.
"The
nerve fibers from the cells were severed, but the cells themselves
remained intact." Nerve cells that have not died can form new
connections. It goes on to say, "The new research suggests that instead
of the sudden recovery Wallis
seemed to make when he began speaking and moving three years ago, he
actually may have been slowly recovering all along, as nerves in his
brain formed new connections at a glacial pace until enough were present
to make a network."
http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm
This
thing was written a few years ago. How can anyone without that proper
equipment determine there will be "No Progress"? A person would have to
be able to see "nerve fibers from the cells." My eyes aren't that good,
so I can't. From the way it read, this wasn't a regular MRI either. This
was a few years ago, so I'm sure the technology is more widely available now. Still,
though, to the naked eye, progress can't be determined.
I go on
to reassure that rewiring can't be seen and may take years. With this
research available then, why is it that people are still being told
there will be no progress? The "plateau" isn't really there.
I have to get my feeding tube changed. (Update 3/11/2020)
I
have a hole in my neck...but I can breathe now so I don't mind. How did I get a hole? I
couldn't breathe. I lost consciousness and I guess at some point a hole
was cut into my neck to hook me to a machine to breathe, a ventilator.
Breathing
has been such a big deal, but it has been treated as secondary. What
good is anything (medication, medical procedures, or therapy) if the person being treated doesn't breathe?
I
put some pictures together that show it has been a very long time. Completely breathing on my own has been a long
process. That process didn't end with me getting off a ventilator, but
many years later. My lungs were finally able to get continuously off a
machine. The tube may be left in, and mine was, in case machine hook up is
needed. When the lungs are strong enough, the tube is removed.
This
is where my hole comes from. Although I was removed from the breathing
machine, the ventilator, the tube was left in my neck for years. When the
tube finally comes out, the hole left behind will naturally close on its
own. Mine didn't. The skin over it had to be surgically closed. I've
been left with an indentation that slowly gets smaller over the years.
Breathing treatments (I was frequently getting these) soon ended after
closing the hole. I used an inhaler (like for asthma). Breathing issues now can just be handled by my regular doctor.
The above was taken at a birthday party. I got out of the hospital for the day. The picture below is just an enlargement of me. After the party I returned to the hospital. I was placed back on the ventilator. I was not all the way weaned from it yet. This third picture is the same day and you can see my arms. Besides the IV bruises, I have hospital arm bands on. These pictures were 2003. I remember that as soon as I got back to the hospital I was hooked back up to the ventilator. This party was the longest I had been off. The hospital was in the process of weaning me off of the machine.
____________________
This is in 2006 before I got out of the hospital. The hole in my neck was just closed. Prior to that it was open and I could breathe through it. The tube had been out a year, leaving an open hole. I used that open hole for breathing.
____________________
This was my profile pic at WeAreTBI.com. That was 2009. You can see the hole is closed and healed.
____________________
In 2013 you can see the hole has gotten smaller. At this rate, I will have a hole a while. Eventually it will become a scar.
________________________________________
2/2/2017 Here's 4 years later. Obviously changes are happening.
______________________________
2019 Update
15 years after the tube was removed, I still have a hole in my neck from the ventilator. I had this thing for 2 years, which is unusual to breathe on your own again after being on a machine for so long.
I was weaned to room air after the first year. It is all out now. This process is taking years. It's not just being on a machine, but also the many years of damage.
This video was earlier this year (2019). At 55 seconds I start turning my head and you can see the hole. I did a tracheal tube for years. It was removed a few months after the surgery and procedures at Stanford to remove the AVM (blood clot). Then I had an open hole for a year. I had surgery in 2006 to close the hole. (Tracheal tube was removed 2004 and the hole did not close on its own.)
I've had many pneumonias. These have become less frequent. The last few years it has been bronchitis and other bronchial infections. That's where it ends for now.
