A few moments after entering Boutique bar, my go-to martini lounge in the heart of Toronto’s gay village, I was instantaneously captivated by a man whose beard of white complimented a thick set of dark eyebrows that every man over the age of 60 would be envious of. I soon began to realize that his distinguished look harmonized well with a humble persona that could be spotted a mile away – or at least a few feet away, in a dimly lit room full of bona fide regulars.
Locking eyes on more than a handful of occasions, my lifelong crony couldn’t help but notice my intrigue. “His name is Mark Wilson”, he nudged, “and it looks like you need an introduction”. As we slowly met ways in the tight knit seabed of bodies, he introduced himself with a deep hug that I couldn’t help sink myself into.
It wasn’t before long that I noticed that Wilson had a keen sense of story telling that dragged you in and kept you there. I was more than willing to take the plunge and I came to realize that he was just the subject of my very first interview. We exchanged numbers and further pleasantries, concluding with a scheduled coffee at Glad Day Bookshop, the world’s oldest LGBTQ bookstore.
Reuniting with Mark Wilson was met with another hug and a kiss on the cheek, but this time the atmosphere was bright and pleasant with the walls painted a flamingo pink. It was both of our first time visiting Glad Day Bookshop’s new location, yet the content of Wilson’s experiences during the HIV epidemic marked synonymous with those written in the pages of the books fitted on surrounding shelves.
According to An Annotated Chronology of the History of AIDS in Toronto, 1981 marked of the first reported cases of pneumocystis carinii pneumonia primarily affecting gay men. By 1982, Acquired Community Immune Deficiency Syndrome (ACID) – later knows as AIDS – was published in the Body Politics.
Wilson’s story begins in the mid 1980s, when he became a personal care worker for a close personal friend that had been diagnosed with HIV. It was this friend that introduced Wilson to a specialty volunteer group at the former Wellesley Hospital, which was the primary care centre for HIV/AIDS patients in the Toronto area at the time. This specialty volunteer group (SVG) was primarily committed to the care of HIV patients, who were eventually moved to a separate wing of the hospital to ensure better focus and access to care.
“I remember when I started volunteering there, when the red ribbon campaign was really big. I was wearing a red ribbon, and I went to work one morning, and I get in the elevator and our president of the board jumps in – nobody liked him and he was just plain ignorant and so full of himself – and goes ‘what’s the red ribbon for? Did somebody’s pet die or something like that?’ Well, you should have seen the people look at him, ‘boy are you ever ignorant?’ as the red ribbon campaign was everywhere. I didn’t talk too much about my involvement with the hospital, but clearly somebody decided to let it be known that this is what I was doing, and he called me in to his office and told me that I was not allowed to speak about it, my involvement with the program, and I should consider leaving that program… due to business and stake holders…. and I just looked at him and said ‘what I do in my own time is my own business and not yours, at all. I have no intentions of stopping or leaving. SO if you want to take this further, we can do that but I suggest we just leave it here.’ He hated me.”
Individuals in the SVG consisted of men and women of various age groups, straight and gay. “To my best recollection” Wilson points out, “I think gay men in the group were the minority. There were a few of us, but I distinctly remember there being more straight women. Some of which had a personal relationships with someone who had already passed away or they had friends who were diagnosed already.”
“It was a very eye-opening and enriching thing to experience. To uh, because you saw… the things you witness from some family and friends… the absolute denial. Unbelievable. ‘no they do not have that disease… they have cancer’. Okay, well, none the less. But, they were the same ones who didn’t want to touch them – and they were family! And, those were the hardest things to deal with. To watch. People who should know better, the relationships just fall apart.”
Indeed, this was a period where medical professionals and the general public were still wary about touching someone who had AIDS/HIV. Nurses would double up their gloves to touch the patients and wear face masks as a precautionary measure. “From the get-go, I didn’t have an issue with touching someone who was sick. I didn’t believe from the very onset that it was something you were going to get from touching someone, like measles. It was my instinct. It was just my instinct. These people were in need of some human contact, because all of a sudden somebody says ‘Well you’re sick and this is what you have, this is something we don’t know so much about’ and then all of a sudden you’re put in a bell-jar and isolated, with no human contact… sending you off to a Leper colony and stripping you of your humanity.”
Wilson and the other volunteers were met with initial resentment from the nurses, because they thought the volunteers were taking over their jobs. While it was not the responsibility of volunteers to administer medications, Wilson was trained on IV protocols. Eventually the nurses saw the value in the added support, eventually leading to routine meetings together which bridged the gap between communication. While the nurses could monitor other patients in separate wings of the hospital, for example, the HIV patients needed social interaction, bathing, and other services not otherwise offered by the general staff.
“One of the things that we were taught was how to coach somebody how to die, which was a very new thing. I remember going, ‘wow, how do you tell someone that it’s okay to let go?’ but fortunately I only had a couple – about 3 situations – where that was the case. And then you have to go away, yourself.”
Wilson recollects a time spent with a young patient, who was found to have scabies after his admission. “They were insisting that everybody glove and wear a gown and a mask, and this person was not in good shape, at all. Uh, his family was there and they came from out of town. And um, just a very difficult thing for families to even understand because they may be just discovering that this person was gay. And then have to take all this in. They were sitting there, and they were always in the room – there was always someone there and then someone would come along and someone would take a break. SO I went at one point, and said ‘you all need to just take a break. I’m going to stay here with him’ so he wasn’t left there on his own. He wasn’t conscious, and um so I stayed with him.”
One thing that the volunteers were taught was that most people, conscious or unconscious, don’t want somebody there when they go. The majority of people would rather be on their own; however, there were certainly exceptions.
Some people didn’t cope as well, we’d get some in the program and they didn’t last very long. You know, it was too much for them.
“I had one guy that I was a primary caregiver for, and he did NOT want to be alone. No, he had to have somebody there – had to have EVERYBODY there as far as he was concerned – but this guy wasn’t conscious. They left the room and I did not glove. I just held on to his hand and talked to him and he was unconscious. And then, he just, I saw him take his last breath and I just waited… and waited… and we were suppose to buzz… but he had been through enough, so I had just waited for about 10 minutes and then I went to the nurses station and reported it. That he was gone.”
Mark Wilson’s willingness to be present with patients during their most dire hours got himself in trouble on a few occasions, where he put his life on the line and defied what was expected of him.
“There was a patient where his family was in total denial. He was a straight guy. Wife, brothers, sister, mother. He was middle aged I guess and he had full-fledged AIDS and he was in the beginnings stages of dementia. And he came in and he was equipped with a hickman line. When he was admitted, they wanted to put a possey belt on him, on account of the hickman line and his dementia, so it was important to put the possey belt on so they don’t rip out all of their lines. His family were getting antsy, ‘well he’s not crazy, you’re not strapping him down, the man’s got cancer… you’re not putting restraints on him!’ and I tried to explain very nicely and said ‘it’s for his own good’ and I showed them how it’s put on, and I said ‘we are not strapping him to the bed like his psychotic or something like that, it’s just going to keep him from getting out of bed when he has an IV and a hickman line in place. It’s very dangerous’. ‘nope, nope, we do not want to have that on him’. Okay… can’t put it on, family won’t allow it.”
“He was on my patient list that night, and he seemed fine. He was in a relatively good mood, he didn’t seem off. And then it was towards the end of the shift, making sure everyone was comfortable. He was in a semi-private room and he was in the bed near the window, there was no one in the first bed. And so I opened up the door to the room and he’s not in the bed. And there is blood on the wall, there is blood all over the bed, there is blood everywhere… and I went in, and he was on the floor between the bed and the window, and he was bleeding, because he had ripped out his hickman line. And so I immediately applied pressure there and reached up to call the buzzer for the nurses and, now… stupid thing was, they had gloves and everything but they were in a box outside of the rooms. So, in a situation like that … you don’t have time to say ‘I’ll be right back, I just have to put some gloves on’. So I got in trouble for that…
“That was another case where I witnessed the house keeping staff refusing to clean up the blood. They just wouldn’t touch the blood. It was very simple, you just put on some gloves, and you clean it up like you would any other way… like it was anyone else’s blood. But, you know they wouldn’t touch it so I cleaned it all up. And, we got him all cleaned up and into another clean bed with a possey belt, and the family came the next day… and they were upset about the possey belt but we told them what had happened. ‘you know the hospital rules’, ‘well yes I know the hospital rules, but some circumstances dictate you have to do stuff’. And then you have to go through a test for 6 months to make sure you don’t have it. Never did, never have been.”
While his time at the Wellesley Hospital was marked with sad moments, Wilson recounts those that reinforced his hope in humanity. “There were some situations that were just… the most wonderful cases, where family just came together and were just wonderful. There were men, um, straight men, who were all of a sudden diagnosed with the disease. And uh, they were married with children. And like how can this happen? Well, the obvious thing would be blood transfusion, which at the time was one way… however, there were straight men who were clearly doing things on the side. Unbeknownst to the family. And uh, there was one family. They were just the most incredible standing there. They knew what he had, and they weren’t afraid to touch him. And I would talk to them, and they were a very religious Roman Catholic family and I got a call one night. It was about, well, one o’clock in the morning that he had been readmitted to the hospital and he wasn’t doing really well and his wife, it was one of the nurses that had called me, his wife had wanted to know if I would come and shave him, because he hadn’t had been shaved for a few days. So I had said ‘ya, for sure’. So I had gotten out of bed and arrived at the hospital, and chatted with him and kind of gave him a bed bath and shaved him and got him all cleaned up and cut his hair. And so the next day when the family had come in, he was looking really good and he passed away about four or five days after that.”
“And they sent me a beautiful letter, his wife did, uh, after the funeral. I didn’t go to the funeral, as it was one of the things I didn’t do. You know some of the patients you would get close to, and they would say you shouldn’t get emotionally involved, but you can’t help but to get emotionally involved to a certain degree, and but I would never go to the funeral. Unless it was a personal friend of mine, but I just would never go to the funeral. It’s just how it was”. There was no general rule; however, but for Wilson, “it was just my rule”.
I learned I was capable of doing a lot more things than I ever thought I was capable of doing. I learned that fear is based on ignorance.
When I asked Wilson about the coping strategies, he stated that he had nothing in particular, other than keeping himself busy.
” I didn’t… I didn’t let what happened with these people kind of interfere with my daily routine. I had to kind of separate the two. Um, and it was sometimes difficulty. Sometimes, I just needed to go, um, I can always sometimes be a solitary person so if I just go for a walk, go sit in a park, and just sit quietly, just let my mind flow and let all that stuff go through, and empty out, and then it’s… I guess that’s just one of the things… Sometimes it would be, um, necessary to talk to somebody. Just go and talk to somebody else. We supported each other a lot, that group, so if you had a particularly bad situation, um, ya. We also had other, um, other things that were open to us as far as support, if we needed it at any time… at all. We could call somebody. Kind of like a distress center, or whatever. Pretty much, we were the ones trying to relieve the stress of other people. And that’s the way I would do it. Some people didn’t cope as well, we’d get some in the program and they didn’t last very long. You know, it was too much for them.”
Among the contrasting stories of hope and despair, Wilson recounted some humorous memories which painted a picture of his truly humble nature and resilience.
“I went in to see the patient, and this person was perky and fine, sitting up reading, and I went in and I stood there and I said “you know what, I’ll be back… just bare with me”. There was this massive spider on the wall, behind the bed okay, well.. I was just the worst arachnophobia, so I went to the nurses station and I go ‘somebody’s gotta go in to that room. There’s a spider on the wall and you need to get rid of the spider’… and there were two or three nurses at the station and they were looking at me, you know, ‘you’re not serious!’, ‘O, I’m deadly serious’, I said, ‘I cannot go in and deal with that patient with that spider on the wall’. They all started laughing and someone went in to get rid of the spider. And they all said ‘Really, you’re that afraid of a spider?’ and I go ‘I’m terrified of spiders… if there’s one in my apartment I have to call somebody to come in and get rid of it’. It was just that bad.”
“A week or 2 went by, and my supervisor called me into her office when I was coming in on my shift and said ‘O I have another course that I’m going to send you on… it’s going to take place in the afternoons, it’s only for about an hour or so everyday for about 5 or 6 days.’ And I said ‘o, okay…’ and she said it’s at the Clark Institute, which is now CAMH on college street right before Spadina. And I was thinking that it must be some form of psychology course. No, it was a doctor who was doing a study… and training thing on arachnophobia to help people overcome their fear. I could have killed my supervisor. SO I said ‘okay, I’ll do it. This is silly’. And so I go in and my expectation was me and maybe half a dozen other people and we’re going to talk about our fears… no, it was just me, the doctor, and the research assistant and a whole lot of spiders… alive! It was totally trying to desensitize you… so today, I can put a glass over a spider and catch it to put it outside. I will react very differently if one lands on me or starts crawling on me, I will scream like a little girl.” His graduation after 6 days was to pick up a tarantula out of a jar and let it crawl up his arm. “And I had to encourage him to go up my arm”.
“Another afternoon shift… there’s a bat in one of the rooms, a 4 bed room. There was no one in it at the time, because everyone was afraid of this bat… The nurses said ‘We called security, but security won’t touch it’. So, I went in and I just put on gloves and I chased it around. And finally it was clinging on to a curtain, so I had to stand on a window ledge and I took a towel and I just put it on top and grabbed the little guy. And I’m holding on to him and, they’re cute… but he’s gnashing his teeth and his head is going back and forth and I took it out and they all went screaming and I go ‘Ya? Remember the spider?’ and I just took him outside and let him go. They’re just little animals, that’s all.”
As the interview was coming to a close, I couldn’t help but to ask what his greatest life lessons were. “There were many”, Wilson insisted, “I learned I was capable of doing a lot more things than I ever thought I was capable of doing. I learned that fear is based on ignorance. I learned a lot about people and their intolerance and, um, certainly their compassion or lack of compassion, which we saw a lot of. And the need for human beings to have human connection. Don’t be so quick to judge people based on their appearance or based on whatever. You don’t know their history, you don’t know… you see street people, they were somebody’s kid at some point. It taught me to become more compassionate for people, because it’s not always their fault if that’s where they are. Certainly I learned that you can push your limits, and that it’s good to do that. That’s where you find out where your strengths are, and your inner strengths lie. About how much you have, and uh… the idea of the fear of the unknown. There’s nothing to be fearful of, you have to learn and there’s nothing to fear. Fear is all in your head… For the first couple of years that I was there, people would say ‘you’re going to do this or that’ and I’d say ‘are you fucking nuts, I would never do that’. But what is there to fear?”
When Wilson’s friend passed away in December of 1996, who he was a primary caregiver for, he went back to the hospital a week later and thought “it’s been a long year and I would estimate that probably 30 to 40 odd deaths I had dealt with that year, and I feel like I reached my quota of deaths and I need to step away”, which the hospital recommended. “Next thing you know, they were closing down Wellesley Hospital. They were moving the HIV patients all down to St. Mikes. A catholic hospital as it is, did not want HIV patients all in one area and wanted to spread them out because they didn’t want… they had their reasons… but clearly we understood that they didn’t want people to know that there were HIV patients there. They also made it clear that they did not want the volunteer group. ‘You can volunteer, but we are not maintaining that type of volunteer program at St. Mike’s hospital. You can push the book cart or the gift cart, but not willing to maintain that particular program at St. Mikes.’ And that was the end of it!… I was looking forward to going back, but that was the disbanding of the whole thing. Most nurses had retired since then, some moved away up north, we just all of a sudden lost track of everybody. Everybody went off to do their own things.”
Once the interview ended, we took a walk along the AIDS memorial path. He pointed out the names he knew and the personalities he was fond of. It was transparent to me that Wilson’s memories served as a sense of strength for him. His contagious smile was a constant reflection of his resilience, an intimation that solace can indeed be found in historically melancholic circumstances.
Since leaving the volunteer position, Wilson focused on his career as a pension administrator up until his retirement a few years ago. “I look back today, and I really learned a lot. A lot about myself, and if it’s the same situation again, if you can turn back time, I wouldn’t change a thing. I would do it all over again. Exactly the same way.”