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"All I Ever Wanted to Do..."
"Update"
International Task Force on Euthanasia and Assisted Suicide
Year 2003 Volume 17 Number 3
page 6

All I ever wanted to do was live, have a child and teach since I was five years old.
But events in the mid-1980s almost stop all of that from happening.

Due to being wildly misdiagnosed, garden variety lupus spun out of control. I sank into nearly continual seizures. That earned me an extended stay in the intensive care unit (ICU) of a prestigious east coast hospital. It was so sad. I couldn't think, talk, bear children or have a meaningful life again. I had to be allowed to die with all basic treatment and stimulation stopping since I wouldn't notice anyway. Of course I would never be able to write again. The prevailing opinion was simply that my death would be better than my adequately treated disability. My husband sided with the physicians.

So I obliged the staff and died. NOT!

Here's the real story -- I could actually hear all these conversations about my futile care and demise held in my room.

I desperately started trying to communicate. When talk of my pointless life would commence first I tried moving to show the topic really mattered to me. In response I got sedated for seizures.

Then I tried vocalizing. It sounded like moans. I got more sedation for my efforts.

I switched to writing in the air, begging for my life. They didn't get it. So, I began writing my plea backwards hoping they could get it that way. Nope.

At that point I also started memorizing the ICU gossip shared over my body. I heard a lot 24/7 since I was treated like a piece of furniture. As I was not "really there," it was okay to complain about my care while "having" to "move and dust me." I heard that last phrase more than once.

I also heard allegedly funny staff arguments over what kind of vegetable I was in the intensive care garden patch.

In absolute terror at that point, I noticed a wall calendar across from me that didn't say the month, but did say the date. I picked up that the top page read "TODAY IS 21." I immediately started drawing in the air what the date was during rounds. No one noticed -- not even when I changed the number as the week rolled around.

Except for a single nurse ...

She began to work with me by my blinking. When she brought this up to the medical staff, the response was that my blinking did not fit the diagnosis. She couldn't record my budding conversation.

We continued after her shift with ink on my fingers, a clipboard and increasingly complex communication boards made from old file folders and markers.

Her loving work earned me a final session as to whether I was already "gone" or not. I was asked if there was anything I wanted to say. I replied that I needed a divorce to get therapy.

No one ever doubted my presence again.

I still had to struggle for the most basic things like trips for follow-up care, food, water, getting stitches out, counseling, and maternity care. Yes, not too long after that I found out my sterile problem was going to be born in the fall. That son started college this past fall. I earned another master's degree. Obviously I am thinking and writing for you to be able to read this now.

I believe Terri Schindler Schiavo is in a very similar situation to mine back before my son was born.

Anyone who is or knows a woman should be very concerned. Disability can happen any time and anywhere due to illness, accident, or genetics. It is an equal opportunity minority - one that people can involuntarily join instantly.

Women who lose their caretaker status are particularly vulnerable when they need that same level of attention themselves. Indeed, most wards of public guardians are women with cognitive-impairments, precisely the group mostly likely to be starved and dehydrated across all institutional settings.

Therefore, know that supporting Terri's right to live is in your own best interest. I am very proud to say I became an exceptional education teacher as a direct result of Terri's inspiration during the October 2002 hearing when, once again, Judge George Greer ordered her death by starvation and dehydration.

Rus