Feeling Helpless

I got a phone call this morning from a gentleman whose wife is currently hospitalized with God-knows-what and he said in addition to what they thought she has (blood disorder, head injury) that now she has lupus. I felt his pain right through the telephone. To watch somebody suffer and not know what to do is one of the most excruciating experiences a person can endure. My family knows this.

Because 2 years ago, I was in the hospital, comatose from God-knows- what and I also have lupus. For weeks, various doctors stood around my bed in ICU, scraching their heads, adjusting medications that at times sent my lab work zinging into the stratosphere and at other times doing no good whatsoever.

I originally went to the hospital via ambulance because I had trouble catching my breath even as I tried to walk across the living room. I felt like a ninny as I reached for the phone to dial 911, but thought, I'd rather it be a false alarm than to die right here, not having helped myself. I was given oxygen en route, and when we reached the ER, I was able to answer their questions, but when I stood up to transfer from the wheelchair to a gurney, my legs buckled beneath me and I fell to the floor, hitting my forehead. I remember yelling, "Goddammit! Sonofabitch!" and then I remembered nothing else. Blackness prevailed. I was, as they say, "unresponsive."

At some point, I cracked open my eyes and noticed I was in a room by myself. I knew I was in the hospital, and I remembered I had fallen and hit my head. "Oh, " I thought to myself with shame, "I'm being punished for cussing."

My family was called. Daughter from her home near me, son from Oregon, other daughter from CA. Meanwhile, the priest was called and I was given Last Rites. (I'm Episcopalian). All this took place over several days, and my family gathered at my house and spelled each other at the hospital. My mother arrived from South Texas. I was unaware of anything; didn't know the passage of time; didn't hear anybody; didn't dream -- in short, nothing penetrated, even the doctors as they poked and prodded, adjusted medications and talked about the color of my urine.

As my daughters spelled each other, one would pass a notebook to the other, and one of the notations was, "Don't pay any attention to anything Mom says. She's out of her head." One time, I mumbled something about "The Korean guards are after me." Was I ever in a Korean prison? they asked me later.
(At the age of 8, I went to Korea to join my father in the US Occupation after WII, in 1946. )

"No, but I remember a Korean military guard in the compound scaring the bejeesus out of me as I was walking to school one morning. He called out to me, "You Christian?" And I said, "Yes." Knowing full well I shouldn't be talking to strangers, let alone and armed guard in a strange country. But I did, and then he spat on the ground, yelling, "Pah! Christians!" and somehow that scared me and I ran all the way to the safety of the school.

So that explained that little history lesson. Later, as I was moved from intensive care into sub-acute care, they wanted me to eat, yet I had no appetite. One of the kids asked, "What kind of food do you want, Mom?" since I was not eating the hospital food. (Sounds like a rational act to me!) And out of my mouth flew the word: "Cowboy. Cowboy food."

Well, old Mom was for sure out of her head now. I puzzled over that, myself, until my mother arrived and my kids told her. "Oh, that's what she called American food when we lived in Korea. Give her a hamburger." Woo-hoo! Cowboy food!

At some point I went home, but I didn't stay long. I was hallucinating, they said. Believing that my friend Joyce, who dropped by to visit, had put something in her pocket, and when I asked her what she had put in her pocket, she showed me she had no pockets whatsoever in her dress. And the topper was, my cat was talking to me. Talking not cat talk, but English.

Unfortunately, I received no Secrets from the Universe in that conversation, but my family hauled me back to the hospital. Things got really fuzzy, because they said I went into another blackout, priests were called again, and doctors warned my family that they might consider a nursing home at best, or funeral arrangements at worst.

Again, I pulled out of whatever it was. And this time, my family insisted on my going to a rheabilitation hosptial until I got all better. And I was well enough to hate the enforced bed rest, coupled with strength-building exercises, and I ate the damned hospital food, longing for a good "Cowboy" meal. I was well enough to yell at the nurse who put an alarm in my bed, to keep me from getting up and going to the bathroom by myself. I snapped that I would call the administrator if she didn't get that out of my bed "right now." And she did. Heh. In the military, they say if the troops are griping, morale is good. I was really full of morale by then.

At last, I came home. This time for good. I had a visiting nurse for a while, and Meals on Wheels for a couple of weeks, until I decided I could get my own meals, thank you.

And they didn't serve Cowboy food.

All this was brought back to my mind this morning when the distressed gentleman called. Bless his heart, he felt helpless, and I told him my family did, too, when I was in the hospital. However, if the other illnesses/conditions didn't kill her now, she would get better when the lupus gets treated.

And that's the bottom line with lupus, I think. It's worse before it's finally diagnosed and treated. I was diagnosed in October of 1988, and by February, I was in the hospital with lung involvement.

It's been a long haul upward since that time, and just when I thought things were okay, this other thing hit me -- but was it a lupus flare? My doctors "don't think so." Will this ever happen again? "Probably not," my rheumatologist, cardiologist, neurologist, nephrologist and primary care physican agree. "Well, what can I do to prevent this from ever happening again?" Shrugged shoulders; even my doctors felt helpless.

So I told my family: "If I ever go bact to the hospital with whatever this thing is, I want you to know it's not because of something I did or didn't do. Something that I ate or drank, or didn't eat or drink, or whatever. Okay?"

And that's the way it's been since June - September of 2004. I don't want to ever go back there again. But who knows? I could cross the street and get hit by a a beer truck tomorrow. I can't live my life on "what if?"

That's essentially it, folks. Do the best you can with the knowledge you have now, and trust that you will get better.

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