Date: Fri, 19 Jul 1996 09:45:38 -0400 (edt) From: Sam Damon Subject: Re: [Fwd: Hi All] > This was in our local paper. So thought I would send out to you all and > see if any of who can help this kid. > ------------------- > I have lost someone who has meant the world to me. My dad left me lonely > and sad and I miss him so terribly that my heart aches for him. My step mom > is HIV positive and my little brother is as well. Sometimes the pain is > overwhelming! I wonder if there is anyone like me -- a kid who has lost a > parent or has a parent with AIDS. I would very much like to correspond > with those like myself. And maybe start a support group. Is there help > for kids like us? Please write to: Kenny Barney, Route 3, Box 181, > Astoria, OR. 97103. > > Take Care > Ron > Web Page: http://rever.nmsu.edu/~roncat > Private E-mail: roncat@acca.nmsu.edu Jim, thanks for forwarding us that heartwrenching message. Unfortunately, neither GayNet nor QueerLaw may prove very helpful since most gays don't have parents with AIDS/HIV. Still, I can't think of many more appropriate forums, and since many gays volunteer/work in AIDS, I suppose it's a good place to start. Ron's plight is all too common in New York City, where heterosexual IVDU's constitute the majority of newly acquired HIV infection (which is not to say that Ron's loved ones are heterosexual IVDU's). Many of these heterosxuals also have children, or are pregnant. Unfortunately, ignorance of safer sex and needle/syringe cleaning is usually synonymous with ignorance of contraception. I attended a conference several years ago that highlighted the growing problem of "AIDS Orphans." Unfortunately, I can't seem to find my notes. Although there are many such children in NYC, few of them are as eloquent and resourceful as Ron. Many haven't even begun school yet, much less have a PO Box and email (and web page!). Communication then will be difficult. Still, I love the idea of starting a Usenet group on the topic. Speaking of Usenet groups, there are several devoted to AIDS which you and/or Ron might try accessing. Posting your message there should prove helpful. Here are a few more suggestions: 1) Buy or borrow a copy of _Landscape Without Gravity: A Memoir of Grief_ by Barbara Lazear Ascher. In it, she writes of her brother's death from AIDS and how it affected the rest of the family. And most importantly, how she learned to grieve anf finally, to find closure. Unlike most such books, it's not a preachy how-to book. It's extremely personal and eloquent, offering a perspective that we often ignore: that of the heterosexual sister after a gay brother's death. And much to he credit, there is no sentimentality. The brother was no angel and she makes that clear. Yet there is no blame, just a path to healing. Lazear, who also writes travel pieces for the NY Times, founded a support group for the siblings of People With AIDS. I was so moved by her book that we invited her to speak at our weekly AIDS conferences. Her voice -- and *your* voice, Ron -- is a voice too often forgotten, when in fact, you suffer along with the person infected. 2) Call the National AIDS Hotline for a local support group, or at least one that you can contact. They're at 800-342-AIDS, 24 hrs. I used to volunteer for them and have handled scenarios like yours. Simply give them your zip or area code, and type of referral you need. And please call them as well if you simply need someone to listen. I did the midnight-8am shift and many calls were simply panic calls that weren't seeking information, per se. 3) Call the PWA Coalition Hotline at 800-828-3280. This excellent resource is operated by people with AIDS so they can offer a firsthand account of what it's like. Additionally, on Mon, Wed and Fri, they have the mothers of PWA's staffing the hotline so you can see how others are coping with loving someone HIV+. They also have an excellent library of information which they can photocopy and send to you free. Just give them the topic of interest (i.e. Protease Inhibitors, finances, grieving, tuberculosis, etc) and it'll be in your mailbox within a week. Although we were supposedly the experts on Peptide T since we're AIDS researchers, one call to them got us a 30 page packet of information, much of which we never knew, Lastly, they have a wonderful magazine which PWA's can get free; a donation is requested from others. Call them! 4) You can also try AIDS Project Los Angeles at 800-922-2437; they can provide some networking hints even if you don't live in LA. 5) Assuming that you or your brother is a teen or near it, you can contact the Ryan White Foundation at 800-444-RYAN. They offer support and resources for teenagers affected by AIDS. Ryan White, for those who don't remember, was a hemophilian teenager who made headlines for his tireless activism. He befriended many celebrities and Elton John even sang at his memorial. 6) My listings are often outdated but I found two AIDS hotlines for Oregon: 800-777-2437 and 503-223-5907. 7) If you are religious, I can give you denominationally-specific referrals that deal with AIDS. Although I am not religious myself, I've seen the emotional power of religious support to those who are. Let me know your denomination if you are interested in this. 8) HBO had two specials within the last couple of months that dealt with loved ones dying AIDS. They were both shown in a series called "Video Diary" I believe (not sure). About three months ago, a young woman made a tribute to her father, who had recently come out as gay and subsequently died of AIDS. And two weeks ago, they had a touching video diary made by a woman dying of AIDS to give to her young daughter. Based on her behavior during the funeral, the girl is probably still too young to understand what happened to her mom, but the video legacy will prove more powerful than any oral account. I have both these on tape if you want them. 9) Hale House in NYC is an organization that takes care of babies with AIDS. Mother Hale and her daughter Lorraine has won many national humanitarian awards for their selfless and pionnering efforts. Unfortunately, I don't have their number offhand. Remind me if you want it. 10) Lastly, if you can afford the call, here are some AIDS-specific modem-accessed bulletin boards: HIV Info BBS (CA) - 714-248-2836 Fog City BBS (CA) - 415-863-9697 Black bag Medical BBS (DE) - 302-994-3772 AIDS Info BBS (OH) - 614-279-7709 MIdwest AIDS Info exchange (IL) - 312-772-5958 Critical path AIDS Project (PA) - 215-463-7160 AIDSNet (NY) - 607-777-2158 Good luck; if you need further info, please don't hesitate to contact me at: damon@dorsai.org PS - I'm going to take the liberty of forwarding this to a friend (Hi George!) who is much more of an AIDS activist than I am. Perhaps he can think of better resources and/or forward this to his AIDS forums.