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"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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