Dr. Peter Centre Vancouver | Excerpts from The Diaries

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In 1999, at the end of the decade, Dr. Peter Jepson-Young was ranked among the top 100 British Columbians who shaped the province in the past century. The documentary “The Broadcast Tapes of Dr. Peter”, was nominated for an Academy Award in 1994. In 2002, CBC-TV commemorated Peter’s death with another documentary “The Energy that Is Me”, and the Dr. Peter Centre was highlighted as part of Peter’s legacy.

Friends: “When you are ill, friends are the people who spend time with you, rather than send flowers and chocolate. I treasured the friends who stayed with me in the hospital when I was sick.”

Family: “The effect of my HIV diagnosis was hard on my family. They had to deal with the effects of my having AIDS at the same time as accepting my being gay. The CBC diaries were a sort of “coming out” for my family who had initially been afraid of being judged and were concerned with the stigma. However, after they talked to friends about what was going on, they were overwhelmed with the response and support they received.”

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Perspective on time: “My time with my family is much more precious, knowing that it is finite. I make the most of every moment.”

Health: “People’s most valuable commodity is their health, which enables them to participate in everything. Having experienced illness, I find that it is such a gift to be able to do things again.”

Adjusting: “Getting an AIDS diagnosis meant going through adjustment phases. Now I am learning how to be blind.”

God: “My family initially had concerns with my ‘lack of belief’ and worried that I would have a fear of dying. I developed my own Affirmation coming from a sense of being able to draw in the forces around me to enable me to heal.”

New state of AIDS: “AIDS used to be a death sentence. Being relatively healthy and active, I consider it to be a nuisance.”

Stereotypes: “The straight and gay cultures each have stereotypes of each other. I was concerned about my acceptability working out in a gym. I got LOTS of help from people there which blew my stereotype with out of the water.”

Strength to carry on: “After the Diaries were aired, people would come up to me when I was out in the community. Many asked where I got my strength to do the diaries. I became quite humbled by a person I saw some years ago who, despite his extensive disfigurement, was very positive and cheerful. It gave me strength when I was assessing my situation.”

Family adjustments- telling the kids: “My sister and I researched how best to tell her three kids about their uncle’s situation. So, my sister and her husband sat down with the three kids and talked about AIDS and about me. The children were very accepting and were a bit intrigued. They needed some basic information and have adapted to my blindness, becoming more touching and feeling in our relationship.”

Church and AIDS care: “There are many ways the church can be involved in helping with the crisis in AIDS. One example is with addressing death and dying with clerics. However, the Church has also perpetuated a homophobic dogma. It is important that people not feel judged. That they’re going to get help and care and hope.”

Fear and Losses: “Most people are afraid of losing their independence. AIDS is a disease of losses. You may lose many things, including loved ones, friends and family. You may also experience the loss of health, loss of job, or loss of functioning, such as vision or the ability to walk. There is also the loss of independence and control. My losses came one at a time and I could cope at that pace. But, if they come all together, it’s all too much to cope with. Sometimes death is a way of regaining control.”

Losing friends because you’re dying: “Sometimes people close to you are afraid of losing someone that love in a week or a year, and they “take to the hills”. Since you can’t protect yourself against sudden losses (as with accidents etc.), why be selective and get rid of people you KNOW will die?”

The changing demographics of AIDS: “The first wave of people who were hit with the AIDS epidemic was gay men. These people were ignored but, because they were well-educated and had resources, they could cope and build awareness for the epidemic. Now, however, there is the increasing second wave, composed of the urban poor. AIDS has become another face of poverty. In Canada it is affecting street people, particularly native people. There is a high cost of medical treatment and many have no access to medical care.”

Life goes on... Celebrating life with AIDS: “I enjoyed a surprise birthday party arranged for me by my mother. She arranged for people I had grown up with, old family friends and medical school friends to be there for the occasion. It felt like a wedding. It was unique in that everyone shared their different experiences of living with me and it felt good. You miss out on compassion if you keep yourself isolated. We all need to access compassion.”

...make the most of everyday like it is Christmas.”

AIDS and paranoia/ AIDS as a social disease: “I used to be afraid of other people knowing about my AIDS diagnosis. This stemmed from a perception of AIDS being a disease of prostitutes, gay people and drug users, people who are not valued. There was a stigma of having the disease of “those people” as it was not something that one could relate to and one didn’t want to get involved with them. There was no concern with how people came to get the disease. AIDS represents problems in society. Society is not comfortable with prostitution and IV drug users.”

Social disapproval of AIDS: “It’s bad enough for someone with the HIV virus to face a variety of serious debilitating illnesses and possibly an early death. But to have to do this in light of the amazing weight of social disapproval adds a deadly aspect to the disease which no medicines can remedy.”

Stigma of AIDS: “Many people are very self-conscious about being seen going into St. Paul’s Hospital for a blood test of medications. They=re afraid of who they run into or who might see them go into the building. And all of this comes from an aspect of AIDS that is much more than an infection that causes illness and death. It was to do with who was affected by this illness initially; gay people, drug addicts and prostitutes. People not at all valued by our society.”

Response to diaries: “The response by the public to the diaries has been very positive. I have become a sort of local celebrity. People say it has opened their eyes and taught them a lot about the issues.”

Fear and anger: “I found it was better to keep my emotions in control and anger can distort the story you are trying to tell.”

AIDS in third world countries: “Although AIDS is spreading in third world countries, many governments are ignoring it or denying what’s happening. It was the same in Canada in the early days- we didn’t even have an AIDS policy in 1988 and governments were slow to provide education and support to the AIDS diagnosed. By the year 2000, the projection was that 40 million worldwide would be infected.”

Music and art: “I re-connected with music after my AIDS diagnosis, bought a piano and took lessons. I learned that there’s more to art than the tangible and that we can connect with art in the way we live our lives. AIDS teaches that time isn’t indefinite and that we should take advantage of what comes along. Painting while blind made me realize that there ARE opportunities.”

Trust: “When you get AIDS you need to depend more on others and trust them. When I lost my sight, I needed to trust people to help me with shopping, something I had enjoyed doing spontaneously before.”

AIDS and the native community: “Tragically, natives acquire the AIDS virus in the cities through prostitution and drugs and then bring it back to their rural communities who currently don’t see AIDS as a high risk. We need to educate about the high and low risks of AIDS infection. One chief noted that “We learned our lesson in the past through smallpox... we don’t want it to happen with AIDS”.”

AIDS in prisons: “I have advised inmates on how to reduce the spread of AIDS. Living in a restricted, artificial environment, inmates are dependent on others. Society needs to acknowledge that things happen and help people who can’t protect themselves.”

Public honours: “In being awarded an Honourary Doctor of Law by Open University, Peter was credited with: “Having shown the public how to deal with AIDS and has exhibited qualities in how to deal with difficult circumstances with grace, humour, spirit, determination and dignity. All while being an ordinary person. There are no great men- merely ordinary men, responding to great challenges and dealing with great, unbearable burdens. We all have been touched, moved and changed by Dr. Peter.” Peter responded that the honourary degree adds another dimension and provides a completeness into “how a project can be done in such a simple fashion.”

Adapting to the progression of AIDS: “I have had to progress and change to respond to the progression of AIDS. Initially, the concept of using a wheelchair raised a fear in me that, by allowing it to happen, it would represent a loss. In the end, getting a wheelchair was a relief as it enabled me to get out of the building.”

Getting affairs in order: “I gathered a small group of people I trusted to carry out my wishes, with regards to medical care when I could no longer make the decisions. I wanted to be clear on my wishes, including the one to be at home in my own bed when I die.”

Inner strength: “In deciding where I was to be buried, I visited St. Peter’s in Quamichan, and the pastor there spoke to me about inner strength. I thought of the inner strength and love that keeps me going, something that I want to share with others. My sense of spirituality is really about belonging to me self and developing a sense of spirituality with my surroundings.”

Drugs and AIDS: “IV Drug Use- ...sometimes because of our inability to see beyond stereotypes and other negative feelings we have about this group, we’re not able to address a lot of concerns that affect this group and one of them is HIV infection.”

IV Drug Use: “I certainly don’t condone IV drug use, but I don’t see that we should be condemning those people. It’s not enough to be a junkie- you’ve got to be a junkie with AIDS. Adding HIV to all that despair only makes life that much worse. If the best thing that’s going to happen in you day is going to come out of a needle, who is anyone to judge?”

AIDS Medications: “I’m beginning to feel a bit like a toxic waste dump, and I wonder how much my body can tolerate.”

“...there is something out there that I might be benefiting from, but I just can’t get included in having access to it.”

Poverty and AIDS: “Another side to AIDS is being a disease of poverty...someone may be unable to work and may not have protection of a disability plan....Often people in the second wave of HIV do not have education and they don’t have access medical care.”

“The first wave of the AIDS epidemic, being gay, were largely ignored by society and the powers that be. The gay community included people who were well-educated and had resources to draw upon in order to improve their own situations...the people affected in the second wave don’t have these resources - they often don’t have an education, they don’t have access to medical care and so on. It’s pretty frightening. What’s going to become of those people?.”

“AIDS creates poverty. The diagnosis leads to a downward spiral of disabilities that lead to loss of work and loss of income.”

Having AIDS: “AIDS is one of those illnesses where it is often the sick looking after the dying. And if you lose someone who has meant a great deal to you and then you face your own illness, there’s often nothing left for yourself.” (CBC Diary #69, January 2, 1992)

“There is always a fear that something else is going on. Just because you’ve got one illness doesn’t mean you can’t get another, and this is the reality for many people with AIDS.” (CBC Diary #89, May 27, 1992)

Comfort Care and AIDS: “The quality of life and well being are sometimes as simple as a trip to see family, a meal out with friends or being able to live the rest of one’s life at home. You may be surprised to know that even these small goals are out of reach for many people living with the financial pressures of AIDS.” (Final public statement, November 10, 1992)

Dying: “Having death stare you in the face has a nasty way of putting things into perspective and you sort out pretty quickly what’s really important and what’s not...objects are just things...people become the really valuable commodity...also things you are able to do.”

Conquering AIDS: “No one has ownership of this disease, it belongs to all of us....the only way that we are going to conquer this is through cooperation.” (CBC Diary #77, February 26, 1992)

AIDS and Hospital care: “Many patients die in acute care beds simply because we have no other place to put them. I’ve been in acute care beds before and I know for sure; that’s not a place I would like to die (CBC Diary #13, November 7, 1990)

Endings: “It is important to have the church so accepting. I see my burial in the churchyard on the island as coming home.”

Final words: During Peter’s funeral, Andy Hilcox, his partner, spoke about Peter as “everyone’s special friend—an identifiable face.” He acknowledged that Peter appreciated the affection of those who wrote to him about the diaries. They made a difference to him.

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