Wednesday, January 30, 2013

"Regrettably, the matters you raise in your email are not within our jurisdiction."

There have been problems. The included letter and e-mail show that. This letter is in response to the reply I received from The Office of Civil Rights. This is how the government is when it comes to brain injury. The e-mail is telling me I remain unconscious because that office doesn't handle this. I'm given a physical mailing address. I specifically asked for "electronic." I am not given that.

This is how brain injury is viewed. To top it off, a government office is not reached by e-mail? There is a serious problem here. I have included the letter and e-mail correspondence.
"The brain doesn't get better" is the prevailing feeling. All I can say then is look at me and believe your eyes.

This letter is in response to:

Tue, January 22, 2013 11:56:38 AM
RE: not right
OCR Mail <>
To:Angela Ronson <>; OS OCR Complaint (HHS/OS) <>

Thank you for your email to the Office for Civil Rights (OCR) Complaint Mailbox.  OCR is responsible for enforcing a variety of Federal civil rights laws that prohibit discrimination, as well as a Federal law protecting the privacy of individuals’ health information. 
Regrettably, the matters you raise in your email are not within our jurisdiction. We are unable to provide you w-ith assistance.  You should contact the Centers for Medicare and Medicaid Services (  at the below address for assistance:
Centers for Medicare and Medicaid Services
San Francisco Regional Office
90 Seventh Street
Federal Building, Suite 5-100
San Francisco, CA  94103
To learn more about civil rights and your rights under the rules protecting the privacy of medical records, please visit our website at
From: Angela Ronson []
Sent: Thursday, January 17, 2013 7:51 PM
To: OS OCR Complaint (HHS/OS)
Subject: not right
Please read

I am vegetative, PVS. I know that this is unusual for you to be getting this, but technology now makes this possible. You will notice this complaint is all electronic. I have worked for years to get one finger to be able to type. The above goes to something I wrote. I have had a consciousness disorder. There is nothing wrong with my cognitive skills.  I continue to have problems with speech and movement...not cognition.

The complaint form is attached.  I use the date of the letter  as the date of consciousness.

Angela Ronson

I prefer e-mail correspondence due to my voice quality.

Thursday, January 17, 2013


I have had a consciousness disorder. There is nothing wrong with my cognitive skills. 

I wonder how it is all these years I could have my eyes open and know what is going on around me, yet be considered "vegetative." I got to thinking about the levels of consciousness (LOC). (For ease I will use Wikipedia


Scales and terms to classify the levels of consciousness differ, but in general, reduction in response to stimuli indicates an altered level of consciousness:

Levels of consciousness
LevelSummary (Kruse)[2]Description
ConsciousNormalAssessment of LOC involves checking orientation: people who are able promptly and spontaneously to state their name, location, and the date or time are said to be oriented to self, place, and time, or "oriented X3".[7] A normal sleep stage from which a person is easily awakened is also considered a normal level of consciousness.[8] "Clouding of consciousness" is a term for a mild alteration of consciousness with alterations in attention and wakefulness.[8]
ConfusedDisoriented; impaired thinking and responsesPeople who do not respond quickly with information about their name, location, and the time are considered "obtuse" or "confused".[7] A confused person may be bewildered, disoriented, and have difficulty following instructions.[8] The person may have slow thinking and possible memory time loss. This could be caused by sleep deprivation, malnutrition, allergies, environmental pollution, drugs (prescription and nonprescription), and infection.
DeliriousDisoriented; restlessness, hallucinations, sometimes delusionsSome scales have "delirious" below this level, in which a person may be restless or agitated and exhibit a marked deficit in attention.[2]
SomnolentSleepyA somnolent person shows excessive drowsiness and responds to stimuli only with incoherent mumbles or disorganized movements.[7]
ObtundedDecreased alertness; slowed psychomotor responsesIn obtundation, a person has a decreased interest in their surroundings, slowed responses, and sleepiness.[8]
StuporousSleep-like state (not unconscious); little/no spontaneous activityPeople with an even lower level of consciousness, stupor, only respond by grimacing or drawing away from painful stimuli.[7]
ComatoseCannot be aroused; no response to stimuliComatose people do not even make this response to stimuli, have no corneal or gag reflex, and they may have no pupillary response to light.

The beginning of consciousness.
Looking at this, I was awake, but "confused" in the beginning. I wouldn't have used that term, but rather have used "impaired thinking". I wonder now...the definition of this state says  "People who do not respond quickly...." I did not respond quickly. I still don't. If you have heard my voice it is rather slow. At the time of hospitalization, it was even slower, or not even there at all.
Was it really a consciousness problem, or a communication problem?

It clearly becomes discrimination of my speech. Ask me to write it out and I can. Sure it might take me awhile because I only type with one hand. If I have to verbally say it, forget it. You may or may not even understand me. Again, at issue is speed. In order to be conscious I must be fast and and my speech understood. If that is the criteria, I fail.

Writing became my main method of communication. 
In the hospital, I was having a problem getting people to read what I wrote. This was a long process for me. I needed another person because my arms didn't work. This meant waiting (sometimes days) for my mother to visit so I could have someone write it out. Staff weren't reading the messages I had her write, so I came up with a different idea... 
(This is El Camino Hospital, around St Patrick's Day, as you can see by the shamrocks on the door.) Look at my shirt. It's covered part-way, but reads "IF I GAVE A SHIT, YOU'D BE THE FIRST PERSON I'D GIVE IT TO." Staff read that! I got more.

I guess consciousness was in a sarcastic t-shirt quote...with a curse word.

Conscious but Different.
I am different. The word "vegetative" has been used to describe what I am, although this is a misuse of the term. I am not vegetative. I'm just very slow. The slowness appears when I talk, not when you read. If I try to speak faster, you can't understand me.

If the data doesn't fit, you don't throw out the data. You throw out the idea. So I don't fit. You don't put me in a category just to get rid of me. Throw out your idea and start over;  no assumptions.

Saturday, January 12, 2013

Don't Ask Me

"So tell me...What happened?" Another doctor appointment with yet another doctor.
There's something wrong with the system.
A person ends up in the hospital. That person is found to be PVS. Put that person in a care home and forget.
10 years later that person is putting stuff on the Internet.
What happened? You are the one who forgot about that person, and you are asking? Isn't that your job? Don't ask me.

(I'm used to doctors asking me what happened and getting a funny look. I hate first appointments. What about the patient who doesn't know what's going on? What if that patient can't talk? You can't ask them. They are probably still in the care home, anyway.)

[At the last hospital I was at, there was one person who started pointing at letters on a communication board. This is what I did! He went to a nursing home when that hospital unit closed, though. The hospital staff person that worked with him on the communication board wouldn't be there. There's no guarantee that the home even had communication  boards. They usually don't. He would have lost those skills in the first few months-use it or lose it. I'm sure he lost it. All the patients in that ward were "semi-vegetative." It was mostly funded, if not all, by Medicaid, and was closed due to cost. Nursing homes are cheaper than hospitals. I was released to family which is no cost at all. There could have been two "talking vegetables", but money was more important. Also, at this hospital, one could communicate, but be "semi-vegetative", probably because "once PVS always PVS." I hope it's not because of funding, but it was once explained that the government paid more for the more one is disabled.]

Monday, January 7, 2013

Fine, I'll Do It My Own Way!

The only reason I'm alive today is because I did not follow the government's policy on the treatment of my condition. "Washington, DC – In a first of its kind study, the National Disability Rights Network (NDRN) determined that performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities."

My disability comes from a blood clot in my head that leaked, but did not rupture all the way. Common sense would say to remove the blood clot so no further damage can occur. The government policy is to leave the blood clot and treat it with medication.


In my case, I was given a life expectancy of a few years ago, because the blood clot should have fully ruptured and claimed my life by then. I am older than what was predicted. I did not follow this policy.

The first hospital records state:

I did have "recovery of consciousness and motor function." My insurance wouldn't provide what I needed, though. The policy is to manage the problem with medication. Not only does one remain disabled, but also at-risk of dying.

I found someone, Stanford, who would remove the problem altogether. Once that was out of the way, other things could be worked on, like this

The surgery that Stanford provided is key. What you see now wouldn't be possible without them.

Fine government, I'll do it my own way!


UPDATED     12/26/2015