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course, so many questions. How did this happen? Why wasn't he more
careful? What would my friends say? My God, I had kissed him
goodbye! Was I safe? I'm not proud of my initial feelings but they were
a common reaction to AIDS at that time.
Of course I had heard of AIDS but I really knew so little about
it. If I was to be of any value in supporting my brother and helping the
family in this crisis, I knew I must first deal with my own fear and
repugnance. There was some medical information available, and I read
everything I could find. The disease is transmitted by body fluids. AIDS,
Acquired Immune Deficiency Syndrome, is a result of the Human
Immunodeficiency Virus, or HIV. People do not actually die from AIDS
but from secondary infections such as cancer and pneumonia that their
body cannot fight because their immune system is shut down. The
prognosis, once it has reached the AIDS stage is very poor, although, if
treated early, people have lived many years with HIV. I found valuable
information on home care with advice on safety of the patient and the
caregiver. Reactions to medication and secondary symptoms to watch
for were listed. As in many things, knowledge made it less frightening
and many of my fears and misconceptions were put aside. Reading of
the vicious progress of the disease, however, increased my fear and
sorrow for Tom. All the facts I had gathered, however, although of great
value in the next few months, never touched on the most devastating
aspect of AIDS... the fear, revulsion and judgmental attitudes of poorly
informed people and the resulting isolation of the AIDS patient. I would
see this first hand.
I chose to spend three weeks with Tom and the family in July.
We felt that he would still be well enough to enjoy my visit and, by then,
his mother would be tired and appreciate the help. My first sight of Tom
was shocking! From a tall robust man, AIDS had reduced him to a
painfully thin shadow of himself. Most devastating to me, however, was
his total lack of interest in life and the dead look in his eye. Although an
occasional spark would rouse him, generally his thoughts and feelings
were turned inwards. He had given up and it was as if he was already
distancing himself from the living. I began to realize how difficult these
three weeks would be.
Tom's moods were like quicksilver. Sometimes he wanted to
talk; other times he would lash out in anger or retreat into a sullen
silence if anyone even spoke to him. Some days he wanted to go out,
others he would refuse to move from the couch. We never knew when
he would change his mind about anything. We made plans that never
happened and did other things on the spur of the moment It was like
living on a roller coaster.
Object Description
| Rating | |
| Title | Write On! |
| Language | en |
| Date | 2004 |
Description
| Title | Page 58 |
| Language | en |
| Transcript | course, so many questions. How did this happen? Why wasn't he more careful? What would my friends say? My God, I had kissed him goodbye! Was I safe? I'm not proud of my initial feelings but they were a common reaction to AIDS at that time. Of course I had heard of AIDS but I really knew so little about it. If I was to be of any value in supporting my brother and helping the family in this crisis, I knew I must first deal with my own fear and repugnance. There was some medical information available, and I read everything I could find. The disease is transmitted by body fluids. AIDS, Acquired Immune Deficiency Syndrome, is a result of the Human Immunodeficiency Virus, or HIV. People do not actually die from AIDS but from secondary infections such as cancer and pneumonia that their body cannot fight because their immune system is shut down. The prognosis, once it has reached the AIDS stage is very poor, although, if treated early, people have lived many years with HIV. I found valuable information on home care with advice on safety of the patient and the caregiver. Reactions to medication and secondary symptoms to watch for were listed. As in many things, knowledge made it less frightening and many of my fears and misconceptions were put aside. Reading of the vicious progress of the disease, however, increased my fear and sorrow for Tom. All the facts I had gathered, however, although of great value in the next few months, never touched on the most devastating aspect of AIDS... the fear, revulsion and judgmental attitudes of poorly informed people and the resulting isolation of the AIDS patient. I would see this first hand. I chose to spend three weeks with Tom and the family in July. We felt that he would still be well enough to enjoy my visit and, by then, his mother would be tired and appreciate the help. My first sight of Tom was shocking! From a tall robust man, AIDS had reduced him to a painfully thin shadow of himself. Most devastating to me, however, was his total lack of interest in life and the dead look in his eye. Although an occasional spark would rouse him, generally his thoughts and feelings were turned inwards. He had given up and it was as if he was already distancing himself from the living. I began to realize how difficult these three weeks would be. Tom's moods were like quicksilver. Sometimes he wanted to talk; other times he would lash out in anger or retreat into a sullen silence if anyone even spoke to him. Some days he wanted to go out, others he would refuse to move from the couch. We never knew when he would change his mind about anything. We made plans that never happened and did other things on the spur of the moment It was like living on a roller coaster. |
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