Welcome to Let's Kick ASS NY
Let's Kick ASS (AIDS SURVIVOR SYNDROME) NY
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Town Hall Events. |
Reaching Out to Long Term Survivors and Community Organizations. |
We hold Community Event Town Halls with specific topics for HIV+ - like a general meeting where we have medical, insurance, quality of life, Advocating for yourself, Caring for a PWA's, and inspiring stories from LTS themselves. We have had a specific program that included issues of the Brain and HIV and the medicines to treat HIV. Our programs are for Men and Women.
24/7 Live Support for issues LTS's have personally.You can reach us at 866-707-2345 if you want to join or need help? You can reach us by email at [email protected] or [email protected]
You are not alone. We are a community who cares. Our Members.We are a Group that recognizes that LTS are Positive and Negative . While we do focus more on HIV+ individuals in our quest to let folks know they are not alone. We want to welcome those who have been in the fight against AIDS/HIV as Activists/Advocates, family members, partners, husband's, wife's, sons, daughters, and friends. AIDS has been around for 38 years. As long as some have been alive. So we want all to help Long Term Survivors who are positive feel welcome and all get the help they need.
LOCATION SERVED.
We are a METRO NYC organization serving NJ, NYC, 5 Boroughs, CT, and Long Island.Long Term Survivors with programs in NYC Manhattan. We have had programs at hospitals, community centers, and local sites, like Governor's Island in the Summer. We are thankful to be working with other AIDS Organizations and community businesses helping Long Term Survivors.
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We have worked with ACRIA, NYC DOHMH, Visual AIDS, American Run To End AIDS, ACTUPNY, ACTUP ALUMNI, GMHC, My Fabulous Life, END AIDS NOW, Mt. SInai Hospital AIDS Center, and the LGBT Center NYC, SERO Project, U = U, IMPACT+, and Long Term Survivors both positive and negative. No one is alone.
Our Beginnings in 2013.We started as 7 individuals in a break away group at an ACTUP ALUMNI NYU SUMMIT on November 10th, 2013. LTS Matt Ebert said so well in 2014, after our first get together "Last month, I invited fifteen of my ACT UP Alumni friends to join me for a retreat. The purpose of our journey was to understand the needs of HIV/AIDS long term survivors. We shared, among other things: loneliness, depression, thoughts of suicide, our poverty, isolation, grief, loss, sorrow, and the impact of HIV on our lives. We discussed the antiretrovirals to subdue HIV, and their effect on the body and the brain--especially the brain, where ARVs, or HIV itself, is hyper-aging the body’s computer. In other words, our brains are aging at a faster clip. We are always at the forefront, aren’t we? But sometimes being the oldest brain in the room has it’s drawbacks. I forget keys and phone numbers, I forget names and faces, and I wonder sometimes if that is a symptom of survival.
Then we ate S’mores, and we told AIDS ghost stories over the campfire. Well, we would have told AIDS ghost stories, but Rollerena had other plans. Rollerena told us about PTSD and her time in Vietnam as a young, drafted, army soldier. Did you know Rollerena started skating as a way to help overcome her PTSD from that horrible war? Pass me the key, Ro, and she did. I am still receiving the wonderful and powerful books on the Vietnam War that Rollerena promised to send. They are outstanding and potent reminders of the effects of trauma on the brain. I don’t know where the words “Long Term Survivor” started in relation to those of us who suffered the emotional and psychological effects of the epidemic. I know I heard it here on FB, and I identified right away. It’s not a very sexy name, but identification, satisfaction, and accreditation do not always go hand in hand. I have been HIV positive since 1995, but I don’t have to be HIV positive to be a long term survivor of HIV/AIDS. If you were there, in the middle of the darkest days of the epidemic, and you survived while others died around you, then your HIV status doesn’t really matter at all to me. The trauma of those years has a remarkably similar effect on everyone. The group I invited to the FEA was mixed. Many of the problems living through the crisis mirror each other in everyone’s consciousness. Addiction features, depression, and mental health problems are acute in all long term survivors. While HIV positive folks have to deal with regimens of antiretrovirals, HIV negative folks tend to suffer a disproportionate amount of grief, anxiety, and guilt of the--“Why did I survive, and why did my lovers and friends die or seroconvert? Why not I?”. That is a whole other chapter in the Physicians Desk Reference. It’s a punishment we lash on ourselves, and it’s time to let it go for good. Recognize and absorb the larger movement today, recognize the needs of all people with survivor issues, and help a comrade recover today with a call or message. People with AIDS, PWA--I like that term. Some find me old fashioned, but PWA can have a new meaning on this day. June 5, now considered a kind of anniversary for AIDS, do we really need or want one? To me, PWA can stand for any Person With AIDS who’s grief is written on their forehead. That would be millions of people who lived through it, who still suffer the effect of memory. This day is another one for the history books. This is the day when you can take out that photo of your loved one: the child, the parent, the lover, the friend, the sibling--then stand it next to that selfie from last summer, you smiling at the beach, and ask yourself: “Would my loved one want me to die on the vine when I could blossom like morning glory?” The answer is certainly--”No.” Our dead, in their honor, would want you to live your life to the fullest. Celebrate long term survivors today, you are one of them. We are all together now, so dream of someone to honor. I’ve got a reason to celebrate and it’s a good one. I, an HIV positive man, who remains healthy and alive, I represent the living. I get to bless the spirit of those friends who didn’t make it by doing the best I can with my life. I’ll live it to the fullest today and every day because death, a lot of death at a very young age or any age, will reorganize one’s priorities. And once reorganized, those cards can never fall back to where they once lay in that deck. I am at the forefront of medical science, and I am giving back to future generations the experience of my journey. May that journey through science, healthcare, advocacy, and love improve the lives of future generations. We should not be shunned, we should be held up as sages. I beat death. I beat it back with activism, I beat it with my mind, body and soul. In 1999, my mother died of cancer. In the years between her diagnosis and her death, she enrolled in every study she could find at Johns Hopkins and other medical universities. We’d drive for hours up and down the coast to take her to new trials, new testing sites, new doctors and nurses. She never complained. She would say to me: “If my body can be used to help others beat cancer, so be it. It is what it is, and I accept what is, not what isn’t.” She also liked the newly coined: “Don’t go there, girlfriend.” which made me laugh a lot. I think of her journey often. I think of the long road home from Bethesda to Cornwall. The tears I stuffed like shells on days when I knew she was physically suffering, I can cry those tears now. A joyful release, a potent reminiscence, transforming my conscious contact with the living every day. My mother taught me on warm days to roll down the back seat windows of the car so the air wouldn’t blast us in the front. We could talk without the gale force winds and the smell of diesel fuel. In those talks, those hours, she quietly taught me to be courageous, fearless, and generous with my body and soul. She taught me not only to survive, but to thrive, come what may, and that lesson will never go away. This time around, this anniversary day, I’m sending her a message of thanks. And to all of you who lived through the worst of the epidemic, find a fellow survivor, reach out and hold each other tight. Remember your loved ones, and know that just like my own, when it comes to our shared grief and our fallback to guilt, horror and frustration--well, don’t go there, girlfriend. Stay alive and celebrate this day because no one who went before you wants anything less than your personal success, happiness, and pride for a life well lived. That is the great gift of losing so many, we get to live in their honor. Their light shines upon us, never to darken, always to glow like phosphorous in water, so dive in and let it surround you. Don’t wait for it. The fireflies too come to life in June, and the red cardinal and the hummingbird are at your window for a very good reason--to sing your praises and share in the glory of this life. Until AIDS is a text book issue, we press on and celebrate a major victory, ARVs, and in their honor we continue to fight until there is a cure. Someday, before my 100 birthday, I’d like to taste that victory too." |
We recognized with AIDS approaching 40 years and some individuals living with HIV and AIDS for about the same time or even those diagnosed in the last few months the stress can seem like a lifetime dealing with Aging and HIV. We also recognized that some LTS are not infected with HIV, but have been in the same fight against HIV/AIDS with friends and family. You are not alone.
Don't Let Life's Issues Overtake You living in with HIV
Vacations can be fun. Vacations from Medicine can be okay or a danger. Make sure you have talked to your doctor before a med vacation. Then make sure you understand the risks. If you develop any complication, then call your doctor or go to the ER with a problem.
Crystal Meth is a problem in our community. There is help to get off addiction. ACTUPNY even has a Crystal Meth working group addressing issues around Crisis' and problems in the ER/.Hospital. Education is paramount. Know you body. Know your mind. Know Crystal Meth. |
Email if you want to know about social Events and Organizations that can connect you to others in the HIV Community or HIV Activist Community
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