Brotherly Love

Toxoplasmosis is the most common infection of the central nervous system in patients with acquired immunodeficiency syndrome. The classic presentation is that of a single or multiple focal lesions with mass effect. Hydrocephalus due to cerebral toxoplasmosis is a very rare condition with headaches, dizziness, gait disorders, weight loss, and intermitten chronic diarrhea.

Where did the words go? His memory drowned. His brain flooded with infection. No power of speech. No expression in his face. His once vibrant eyes had lost their sparkle. Nothing danced. Mouth agape, he trusted me with his thoughts and left me speaking the words he could not say. Would not say. Never did say, even when he could. HIV – three letters bonded us. Blood brother. Eighteen years my senior. I was his sister at last.

I read his face with my intensely focused gaze. A Braille-like sign language only I could speak. It was subtle, silent, slow, hidden. I watched his eyebrow. It could talk. From his bedside I interpreted its movement. Up a little meant yes. No movement meant no.
I tested his lucidity. “Where are you?” I asked.
Ever so slowly his eye would reach up to the left corner in an attempt to remember.
“I’m in upstate New York, I know that.” He responded.
My heart sank. In the den of our Mother’s California home, I patiently, calmly, desperately tried to sift out the tiniest speck of thought. Of memory.
“What year is it?”
“1985.” It was 1994.
“Who is president?”
“Jimmy Carter.”
“Where are you?”
“At Aunt Angeline’s.”
“What year is it?”
“1956.”
On one occasion he looked worried.
“Are you wondering something?” I asked always with the undaunted belief that one of my questions would liberate him.
“I’m wondering…” he paused. I waited, urging him to complete his thought with my nod.
“Whether or not,” he continued, “I’m pregnant.”
Stunned, I looked down at myself and the absurd conversation I’d been carrying on. I cringed with embarrassment at my own denial. Denial: the accusation I was so quick to heap upon him for not taking the test sooner, for believing it was depression, for waiting too long, for not having insurance, for the unopened video tape, “AIDS What is it and How do you Get it?” In that moment, I was slapped in the face. There was a fine line between false hope and denial.
My brother was dying of AIDS, but denial was what was killing him.
Without flinching, I said to my fifty-three year old brother, executive, businessman, publisher, mentor, trainer, teacher, salesman and opera lover -
“No Bob. You are not pregnant.”
And with a relieved sigh, he said, “Good.”
I leaned over and kissed him on the forehead and walked away. I hadn’t realized that, for as long as it had taken him to formulate that thought, I had been holding my breath. I heaved my own sigh as I reviewed the pathetic scene in my head.
My brother who could not remember, could not use words effectively, could not control his bowels, could not sit in a chair, could not scratch himself where he itched, could not hold a pen, could not turn himself, could not lift his leg, could not bite a sandwhich, could not wipe his face with a napkin, could not remember what his glasses were or what they were for –
And me, whose life had become turning schedules, medication charts, night sweats, HIV, AZT, Diflucan, Mycobutin, Sulfa, Sween Cream, Periwash, diapers, chux, attends, pull sheets, keeping the egg crate dry, bending his leg when I rolled him, wiping him, bathing him, brushing him, shaving him, stroking him and guarding him against the indignity of it all.
Only one day did he cry. It was when I returned from seeing Andrew Lloyd Weber’s musical, SUNSET BOULEVARD. I came to his bedside with the program, ready to begin my critique anxious to share with him my conceptual differences with Trevor Nunn, the director. Bob’s face twisted. His eyes grew wild, panicky, and filled with tears.
“I wanted to see that,” he said. “There’s still a chance I will have the opportunity.”
“Yes,” I lied. “There’s a chance.”

We listened to musicals and the opera that Sunday afternoon at Mom’s. My brother who couldn’t remember the year, could remember every word to “I Still get Jealous” from the musical HIGH BUTTON SHOES and could name every aria we played. I sang, “Papa Won’t you Dance with Me” and my brother’s trembling hand conducted.


At the end of the day, my face close to his, I whispered, “I love my brother.”
And he said,
“And he loves you.”
(Aria -A Sister's Journey With AIDS continued in next post Hospital Bed of Honesty)