"Warning bells went off . . ."

A reflection by Myrna Felix.

Myrna Felix is a member of Freedom Clearinghouse. Readers can visit Freedom Clearinghouse on the Internet at www.freedomclearinghouse.org.


a bell I am lucky to be free today. My personal nightmare started when I awoke with back spasms so severe that I couldn't even sit up -- let alone get out of bed. I had to go to the emergency room.

They wanted to keep me there overnight for observation, to which I agreed, because I was concerned that the horrible pain might return after the pain injection they'd given had worn off.

Next morning my doctor came by and told me I would most likely be released after the physical therapist saw me.

Small warning bells went off at the mention of physical therapy. But I wasn't too worried, because although I have Friedreich's ataxia, I have continued to live in my own apartment, with four hours of personal assistance daily.

The therapist instructed me to get myself down from the very high hospital bed into an extremely low chair, without a transfer board or anything. Since I required a lot of assistance from her (well, duh!) she reported to my doctor that I needed to be placed in a nursing home to build up my strength!

When the nurse informed me that I had only two options -- either find someone to provide me with "24-hour care" or go to a nursing home -- I lost it. I screamed and cried. I called a friend and explained hysterically what was going on. He told me to keep my wits about me and promised to call my doctor. He told the doctor that I neither wanted nor needed to go to a nursing home, and that if the hospital persisted with a plan to send me there we would get a lawyer.

In a short time, the nurse came to tell me the doctor had called and instructed them to release me.

The nightmare doesn't end there, however. My parents, who live in a different state, called. And my own mother asked me if maybe it wouldn't have been "a good idea for awhile" for me to go into a nursing home.

Even my parents don't get it. When the counselor for our state's home services program visited a little while later, she told me she had learned my parents were coming to visit in a month to look for a nursing home to put me in.

Could my parents claim guardianship over me, even though I'm an adult? It would be extremely hard, I was told. Still, it is all too easy for us to be seen as incompetent by others.

Luckily, it didn't happen, and I'm in my own home today. But one memory from that hospital stay continues to haunt me: I overheard my nondisabled roommate's doctor one day stressing to her how much he wanted to "get her back in her own home." And here they were trying to convince me that a nursing home would be "best for me." The injustice of that difference really struck me. It angers me even now.


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