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.