- "When I Woke Up..."
- By Rus Cooper-Dowda
- 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,
- 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, every time 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!
- 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 clipboard
and a broken pen when she talked to me. She would put ink on my fingers,
the clipboard 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
- 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 seizure.
- 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
- 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
- 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 family, 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 surprised 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...