Recovering from a 'Persistent Vegetative State'

NPR ^ | 10-23-03 | Rus Cooper-Dowda

[KosmicKitty]

...it was eventually believed that I would not come out of it; there was much talk about pulling the plug, but the only problem was that I was there and could hear it but the means I had to communicate were not conventional. I couldn't talk, but I could draw letters in the air, and while I was drawing the word D O N ' T in the air backwards so they could see it, and while I was blinking like crazy and doing everything I could think of on my own to commmunicate while they discussed that I couldn't communicate.

That was particularly terrifying, to lie there with folks deciding when would be convenient for their schedules for me to die. I was aware, and I could hear, and I began to strategize for how to prove that I was there....

I spelled letters in the air consistently with my hands, with my fingers. That was difficult because if I did it repetitively, in exactly the same way, they would assume that it was seizures and heavily medicate me. If I did it intermittently, to show that it wasn't primitive brain stem activity, the fact that it wasn't regular was cited as why there was nothing in there. So no matter how I communicated, there was a reason why it wasn't real communication. What really broke it for me was one nurse who realized that I was in there...

[KosmicKitty]

I'm still trying to get my real audio, to work, new ISP and connection, so I can hear the entire interview myself. I got a portion of the transcript off of a blog site, http://www.101-280.com/archives/000167.html, but found it to be very relevent to Terri's battle.

[smith288]

What a sucky state to live through...

[Mr. Bird]

I wonder if this is the same person from a Reader's Digest first person story several years ago. I think that was a young man. He had similar experiences, and his uncle was the only one in his family that would not consider "pulling the plug".

After I read that, my "last wishes" considerations changed significantly.

[KosmicKitty]

This was a woman, who was concious of everything going on around her

KK

[Normally a Lurker]

Since this thread appears to be general in nature to this point (dosen'd directly discuss the Terri topic), I'd like to say the following, before it goes in that direction:

The "article says: the only problem was that I was there and could hear it but the means I had to communicate were not conventional. I couldn't talk, but I could draw letters in the air, and while I was drawing the word D O N ' T in the air backwards so they could see it, and while I was blinking like crazy and doing everything I could think of on my own to commmunicate while they discussed that I couldn't communicate.

That is almost the classic definition of the "locked-in-state", and a relatively less severe case at that (i.e., as compared to many of the LIS cases). It is almost the opposite of the definition of a PVS state. (refeeence to medical web sites can be provided if necessary).

[VeritatisSplendor]

I want to read this not hear it. Why doesn't NPR give transcripts?

This is NPR! NPR! A minor miracle.

Mrs VS

[KosmicKitty]

I want to read this not hear it. Why doesn't NPR give transcripts?

So do I, I was debating if I wanted to layout the $4.95 to NPR for a transcript!!

[KosmicKitty]

The woman does talk about Terri Schiavo later in the interview

KK

[Normally a Lurker]

Soory re the misunderstanding. I read only the portion you posted at this site.

[Chocolate Rose]

Is this the same article?

http://www.ragged-edge-mag.com/extra/wokeup.html

"When I Woke Up..."

by Rus Cooper-Dowda


The following is a meditation by Rus Cooper-Dowda delivered at the St. Petersburg, FL. vigil held for Terri Schiavo.

In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn't see very well and I couldn't move much -- but boy could I ever hear!

I heard a terrifying discussion then that I will never, ever forget.

Around the end of my bed were a "school" of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, "I'm here!!" No one but me heard me.

They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was "in there."

And they would, in response, heavily sedate me...

I then started spelling the same word in the air, "Don't! Don't! Don't!...."

The doctors decided that the letters I was spelling in the air were repetitive seizure activity and just happened to occur most often when they were in my room discussing killing me...I even took to writing them backwards to make it easy for them to read...

And their response was to sedate me even more....

But, the nursing staff began to believe I was really and truly with them.

One, in particular, starting bringing in a clip board and a broken pen when she talked to me. She would put ink on my fingers, the clip board under my right hand and then ask me yes and no questions in the beginning.

With her I secretly progressed to answering in sentence fragments. However, by doctor's orders she was not allowed to document in my file what she was doing and that I was giving meaningful responses.

But...she did save my inky answer sheets and recorded the questions she asked. She got into a lot of trouble for that.

Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.

At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.

The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.

To prove I could not communicate, he then put ink on my fingers and asked while laughing, "There isn't anything you want to tell us, is there?"

In response I spelled out, "D-I-V-O-R-C-E Y-O-U!" The laughter got very nervous then. The doctors called for medication because I was obviously having a sezure.

Then the nurse who used the board first with me said, "Let me try" and "What do you need to tell us today?"

I spelled out, "D-I-V-O-R-C-E H-I-M!!!!"

There was never a questions after that about whether I was "in there' or not.

Then they said I couldn't breath on my own -- and I could. Then they said I couldn't learn to eat again on my own -- and I did. Then they said therapy wasn't important -- and it was. Then they said I would be dead within a year -- in 1985 -- this is 2003...

They also said I would never have meaningful mental function again -- yet I earned another Master's degree only a few years later.

Here's the real medical corker though -- They also said at the time that I was permanently sterile. That was a cause of great grief for me then as I had very much wanted to bear and raise a child.

But, it turned out my son, who is here at this service today, was born at the end of that year.

It turned out that I was actually pregnant at the very moment they were telling me I was sterile -- a simple test at the time could have established that.

A test they didn't think they needed to do -- so they didn't.

My point is that the medical and legal staff of that world-renown hospital were wrong and didn't listen and made startling assumptions about the quality of life for the disabled community I had joined.

In their eyes, I only had two options then -- full recovery and a lovely hospice death. I did spend time in a hospice against my will fighting to get to my OB-GYN appointments -- but that is the stuff of another story. Leave it to say that it was beyond them that most of us -- especially the disabled community -- live full lives in between physical perfection and death.

To borrow a current phase, we are here today because of that "Middle Earth." I live there as does Terri, all other people with disabilities, their familiy, supporters and friends.

Even those doctors who were so sure Max and I could not possibly be here today will live in that land between perfect health and death if they last long enough -- that is, if they don't do themselves in out of fear that someone else will have to help them someday. Then will they ever be surprized at how much love and joy and life there is for the asking in that "Middle Earth" of the disabled community....

And therefore how much love and joy and life there is to celebrate here today...


Rus Cooper-Dowda is a minister and freelance writer in St. Petersburg, Fla.

Posted Jan. 6, 2003

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[Normally a Lurker]

Is this the same article?

Yep, the article is the same / identical, but it's title, when originally written, was apparently: "When I Woke Up..."

It looks like somone along the way chaged the title to "Recovering from a 'Persistent Vegetative State'" (possibly at NPR?), even though the state described in the artivle is not a PVS state, but rather is a "Locked-in-State".

That change was made by someone, even thought the article does not contain the word Persistent, nor the word Vegetative, nor the word state, nor the abreviation PVS. It seems that someones biases / agendas / etc. is reflected in that change.

Again the article describes a relatively less severe case of LIS.

Thank you for locating the unaltered source. This gave me greater insight as to how various new "facts" may be evolving.

[GeekDejure]

What a sucky state to live through...

If you think nobody cares if you're alive, try missing a couple of car payments !!! ;-))

[spunkets]

" the state described in the artivle is not a PVS state, but rather is a "Locked-in-State"."

Ditto.

[HiTech RedNeck]

The point is that the two appear identical from many external signs. Sophisticated research suggests tests that "may" discern a difference, but the proof of the pudding is always in retrospect -- the patient "comes back" and tells what happened.

[spunkets]

Actually the 2 are very different and are easily distinguished. In the case of PVS, there is no cortical function. That is a permanent condition and is clearly shown in tomography, especially MRI. Not only is there an abscence of any awareness, or consciousness in PVS, the patient is blind and has no cortical control of muscle. PVS results when everything above at least the thalamus is effectively dead.

Locked in syndrome results when cortical function is present and can easily be demonstrated with MRI, but connection is more, or less cut off to command muscular action. Regardless of the claims of some docs, this condition is common in patients during surgery. EEGs are present and the various features can be observed and distingushed in locked in. Their is no EEG in PVS.

[HiTech RedNeck]

Regardless of the claims of some docs, this condition is common in patients during surgery.

The paralyzing effects of the curare drugs are equated to this? Pray tell.

[spunkets]

The docs should know if something like curare, or benzodiazepines was used. The idea is to have the patient unconscious and not simply paralyzed while the docs are doing all the cutting and rearranging.

[GOPbabe]

http://www.katesjourney.com/

Here's another story of a woman who survived having her feeding tube removed for eight days. Heard her on The Factor (O'Reilly) and found her website.