Hope Center

established to address the unmet needs of patients & families

affected by HIV in Knox & surrounding counties

What is the Nature of Hope?

The following excerpts by patients illustrate why hope is important:

I was visiting this guy who didn't have any family--never had visitors in his room. He was in the last stages so I just sat there with him so he could see that someone cared about him. And then, all of a sudden this woman came rushing in his room and started screaming at him that he was a disgrace to her and his father. I guess she was his mother because she said he'd never be a part of the family, she would disown him and God was punishing him. Good-bye. And she left. For once, I was speechless. I wanted to get up and throw her out, but I couldn't move. The poor guy was crying, tears streaming down his face. About 30 minutes later, he died.- Randy

A few years ago I was in the hospital and this nurse said I had to buy my own stethoscope for blood pressures because I guess they were afraid of getting AIDS through theirs. I still have that around somewhere. She was the only one who used it, I think. The nurses only came in the room to bring medicine and food. When they weren't in the room they kept the door shut. The IV pole was electronic and would beep often. It would ring the nurses' station and they would say we'll be in there in a minute. Thirty minutes would go by and no one would come and change the bags around, so I figured it out and changed them myself rather than listening to the beeping all night. One night a doctor came in to check my throat. He had on plastic goggles, plastic hat, plastic pants, shoe covers, top, mask, and latex gloves. He asked three questions and started taking off his protective gear, and said, “That was easy.” Seems like a waste of plastic to me. I felt dirty and like I belonged in a leper camp. I really learned a lot about the medical profession...and it's really sad that human beings have to be so cold to other human beings.- Allyn

They never even mentioned his name at the funeral--never said that he had died. He had Generic Funeral 101. The family was isolated from everybody until the service and then they went out a side door and you never got to greet them. The person sitting in front of me stood up when it was over and said, “That's the stupidest memorial service I ever went to!” - Peter

The minute I told people [I am HIV-positive] they got this strange look--and it wasn't shock. There's something else right under the surface. They were looking at me because they wanted to see what it looks like to find out you're going to die. It's a more civilized version of executioners looking into the eyes of people they guillotine. People want to know what it's like.- Garrett

The scariest thing is the rejection. I don't want to be abandoned. Another scary thing about this illness is that--and I think this is like what old people go through too--is that you lose your peers. They lose people that they've grown up with and they've known or people they thought would be there. It's like before I left here a few years ago, I was attending a HIV support group. When I came back, they were all dead. None of them had made it. That's a very sobering and scary thought. And you see, when I found that out and then my family rejected me, well, I don't want to sound like I'm whining, but it really zapped my hope. And when you lose people you know, it's really, really scary to think that life can be just snuffed out like that. And that's why I said I think that's what old people might get depressed about, because people are dying all around you. - Nick

Source: Gillian, J.V. (Ó1996). The Nature of Hope Among Men and Women Living with HIV-AIDS, (a two-year phenomenological study). Doctoral Dissertation, The University of Tennessee, Knoxville. Revised August 2008

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