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what it feels like: 'it was my job to fight' after hiv diagnosis
12 minute read
allan carpenter — also known as chef allan — was diagnosed with hiv in 1988. credit: ken meyers studio
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content warning: this interview contains references to suicide and violence against members of the lgbtq2+ community.
raised in timmins, ontario, chef allan was encouraged by his italian family to develop a passion for food and cooking. after high school, in the ‘’80s, he moved to toronto to start a career in the culinary scene and then moved to new york where he became a successful restaurateur.
when two of allan’s subsequent partners in toronto passed away from complications related to hiv/aids, allan decided to get tested for the virus. he says he was initially relieved when his results came back positive, as he would know to not pass on the virus to anyone he loved, but soon had to find the strength to survive the experimental medications and rampant discrimination against those with hiv.
hiv is spread when semen, blood, vaginal fluid, rectal fluid or breast milk infected with the virus is absorbed by the body of another person — usually through anal or vaginal sex or through sharing needles or other drug injection equipment according to catie. (more information on how hiv is spread is available on the cdc’s website.) hiv cannot be spread through the air, via saliva (including on dishes), tears, sweat or through touching (like hugging or sexual activities that don’t involve bodily fluids).
modern antiretroviral therapy now causes viral suppression and can get patients to the point where the hiv virus is virtually undetectable in the blood. this helps prevent illness and also prevents transmission through sexual intercourse.
chef allan sat down with healthing to share his experiences living with hiv in the ’80s, working with his doctors to find the right medications, what he loves about his life now and the upcoming, sold-out, dining experience with the casey house.
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this interview has been edited for length and clarity.
what led to your diagnosis?
i was diagnosed officially with hiv in 1988. i was living in new york and enjoying life with my third partner. my first two partners died of aids, so when i fell in love the third time, i thought i was a carrier. so both my partner and i went and got tested and i found out i was positive. basically, they told you to go home, quit your job, stay away from stress and write a will.
what was through your head when you tested positive?
first of all, i was happy now knowing that i was positive. i was not going to give it to the man that i was in a five year relationship [with]. i loved him. so it was a relief for me because i kind of knew, like, my first husband got wastings* and went blind — he committed suicide because, in those days, the doctors would give you some pills to help you go away. and then my second partner got ks** and he died in three weeks. finally i said, if i’m a carrier [of] this disease that they know nothing about, i could never give it to somebody i love. so that’s why we went and got tested. so i felt relieved, on one side, for my love.
but the next day i woke up and i says ok, what does this mean? i just continued to live for five years [because i didn’t start to show symptoms for that long]. there was all this paranoia. in new york, they wanted to put us in isolation and quarantine us. some guys committed suicide, some guys lost their apartments. some guys lost their jobs — they were teachers. but i decided that it was my job to fight. i didn’t want to die in my 30s. i love life. i was a good person. i decided to give all the pills a shot. because, in those days, we would take about 80 pills a day. they didn’t know the dose and they didn’t know which ones were good.
i always got lucky. there was this young doctor who was my age, and i just said to her, why are you interested in me? i’m gonna die. and she said, you’re my age. you shouldn’t be dying. i want to help you out. i always got great help even though, in those days, they didn’t know what they were doing. they were trying to find out the dose [of medications], the amount, when to take them, how to take them. then there’s the bad [pills] — i took both ddi and d4t which they are not using anymore, thank god. ddi gave you chronic neuropathy. so i have that in both my feet and hands. i don’t feel my hands. i don’t feel my feet and at night my feet swell up, my toes, burn my hands burn.
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i had anaphylactic reactions [to one medication]. there was this drug, sustiva, they were trying to find out if a human body could take it. i took the first pill on the friday and by the evening my lips have swelled up over my nose, my nose swelled up over my eyes, i turned red and they rushed me to emergency and no one would come into my room. they would just look in the curtain and go away. we’re there an hour, two hours, three hours. so finally, i walked out in the nude with [my iv]. security stopped me, they say where are you going? i said i’ve been here eight hours, i take pills that need food. i’m going home. so he brought me back to my room and then two people put on hazmat suits, and they put benadryl in one arm and something else in the other arm. that was my first anaphylactic reaction. it could have killed me.
*wasting syndrome is a complication of hiv, marked by a loss of more than ten per cent of the patient’s body weight and fever or diarrhea for 30 days or more.
**kaposi sarcoma (ks) occurs when cancer cells develop in the skin and mucous membranes that line the gastrointestinal (gi) tract. it occurs in immune-compromised patients that have also come into contact with human herpesvirus 8.
how did that feel when you were in an emergency and the medical professionals weren’t helping?
i felt like i didn’t belong in society. i felt like a third class citizen. i felt like i already ran through the stigma of being gay in a roman catholic town. it wasn’t my choice; i was born that way. and then to find out i’m gay and had hiv … i could deal with it, but everyone else couldn’t. i wasn’t ashamed, i didn’t feel sorry for myself. i just knew that i was dealing with something unknown and i had to listen to the doctors and do whatever they say and take all the pills.
we were guinea pigs. we didn’t know what we were doing. we were scared out of our lives. we were sad that we had to tell our loved ones that [we] don’t know how much longer [we] have. but i was brought up to fight, i was brought up to work in a small mining town. so i fought my heart out. i continued to survive until they brought me back to canada — that was in ’96. that’s when i really got sick and they gave me six months to live.
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is that why you left new york?
in new york, there [wasn’t] much they [could do] for you. but my doctor knew that canada was better, and she said allan, you got to go home. medical care is better there. even if you die there, you’ll be more comfortable. and i didn’t want to go because i lived in new york for 15 years, all my friends and family were there. but i luckily got out at the age of 40 and got an apartment downtown [toronto]. i lived in an hiv building, casey house, where to live here you have to [have] hiv. i am still on welfare, but i’m in something called [the] ontario disability support program. and they pay for diapers, my wheelchair, my hospital bed. so i’m glad i moved back because i started to live a better life.
casey house was a home. my last friend died in 1998; all my friends died. all those years, friendships, dinners — died. i was afraid to make a friend because i was sick of funerals and i was sick of missing my friends. but as i got better, i started just getting more help. it takes like a huge team of people to take care of you on so many levels.
but the stuff you think about, the emotional stuff that you go through. like, going to a friend’s place for dinner and they give you paper plates to eat off of and plastic cups, and they have you sit at the children’s table. and they’re your friends, but they’re afraid.
that’s unbelievable that you’re still experiencing people who don’t know how hiv is spread.
last week, i got a shower bench that sits inside and outside the shower from our beautiful government. [the delivery guy came to drop it off.] and the order form says, installed and delivered. and the guy sees my movie poster that’s a picture of me [from] a fundraiser that i did for smash stigma and my aprons says hiv is my disease, is ignorance yours? so the guy’s looking at me and i’m looking at the four pens in his pocket and the chair’s in the hallway. and he says, now you’re going to go get a pen. i want you to sign this. because if that’s you in that picture, i want to get the f*** out of here.
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he said that to you?
yeah. that happened one month ago.
it’s the stigma that we hope [we’re addressing with these] restaurants. i’ve done three of them. it’s education, education, education. when i was in school, i learned world religions — why don’t you teach a simple sex class on stds, ok? we forget that sex is a big part of our life.
when did you get back into cooking?
i grew up in an italian household, so you have your nonna and by ten you learn how to make wine, you learn how to make soppressata. you watch your mother cook. food is life, food is conversation, food is everything to us. when i got to toronto after i graduated [school] and worked for the sheraton center, i found that f & b [food and beverage] was my calling. so, i started in f & b in 1981. and for six years, i worked at the sheraton center as a senior account executive in catering. i was on top of the world when i moved to new york; i opened seven restaurants in 14 years in manhattan.
then i came back [when] i got sick and i took care of myself. i started to feed people on my floor, started to feed people across the hall from me and started to feed homeless people. and then in may of 2017, smash stigma and june’s hiv+ eatery created the persona chef allan. so 14 of us opened up a pop-up a restaurant for three days because 50 per cent of canadians would not eat food from a person with hiv.
how does it feel now to be able to cook for so many people and get back at running a restaurant again?
it feels like i’m useful. it feels like i’m productive. it feels like i’m a part of society. i fit in again, even though i know i [have] hiv. it gives me great happiness, even though i’m restricted with my disabilities.
how do you keep going when you’ve had to contend with so much stigma from so many people?
i don’t want my mother to have to go through [her son] dying before she does. i do not want to cause my mother’s pain. i want to thank all the people that spent all this time on taking care of me and pay them back by them seeing me healthy; it’s a drive i had. everything i get from somebody, i want to pay them back. i want to say thank you, [but] thank you isn’t enough for me. because they saved my life.
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now i’m dealing with long-term side effects of the hiv meds. i’m dealing with being a senior, disabled, all that and it’s a whole new can of worms. because the old days when you went to casey house you went to die. simple as that. [its purpose was] to assist you to die with dignity and love. now i go to a casey house day program, i get five meals a day, i have a foot nurse, massage therapist, physiotherapist. i go on outings and [i’m] in the community. they’re doing all that for me? so i’m going to become chef alan and do this restaurant every year so they can make a couple $100,000 and keep up the good work.
i’m so lucky to receive all this love, compassion, dignity, acceptance, a safe place — that’s so important for me to be in a safe place, a safe environment that not only accepts me as a [person with] hiv, but now [that i have a disability]. i think i’m lucky.
i love life. we’re a community, a community that is stronger together. and i see that community when i fight to stay alive and survive. i do my best, out of respect to the government who pays for everything for me, even though i live on welfare. and out of respect to my care team that has never given up on me. i have kids coming up to me and hugging me and saying, thank you for taking the pills for us. because i took 80, they’re taking one, two and three now. the bad ones i proved that they were wrong [because] i had a body that could tolerate it.
it is incredible that despite everything you have experienced you are still giving back.
i want to change everyone’s perspective. i remember in the early ‘’80s walking down young street and a group of gangbangers threw my lover onto young street to get run over by a car. and that was their hobby, to come into the city and beat up homosexuals.
we used to go to the halloween nightclub parade, and the police would stand [between us and the onlookers] and let them throw eggs on us as we walked into our dance hall. this is 1982 in toronto.
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so when there’s that much stigma, you have a number of choices. you can feel sorry for yourself — that’s a waste of time. people have it worse than me. i’m gonna survive. you know? i want to help people. i want to feed people.
the casey house is always good to me. i don’t mind having no money. i’m surrounded by a few friends that give me a lot of love. i have great caregivers. i’m close to my mother and my brother. and i can’t open restaurants anymore, i can’t jog in the park anymore, but if i could educate, provide compassion to the new innocent people that are still getting hiv, it would be my honour to help people because i got help.
readers interested in learning more can visit the canadian aids society, the community aids treatment information exchange (catie), and casey house. june’s hiv+ eatery event is sold out, but information on upcoming events can be found at the casey house website.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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