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Learning to Live With Grief

The Impact of HIV-Related Loss and What Helps Survivors Through Their Sorrow

Summer 2014

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Learning to Live With Grief

Just as AIDS has challenged us to rethink much about individual and community health, so too has it expanded our understanding of grief. For those of us who are long-term survivors and those of us who have been connected to communities ravaged by AIDS, we may know multiple losses.

While there seem to be certain common responses to death, there are also unique factors associated with HIV-related deaths. The impacts of stigma and discrimination, disenfranchisement, lack of spiritual support, fear of contagion, multiple losses, illness-related complications and survivor guilt are tremendous.

In our grief, those of us who survive may feel a greater than usual amount of rage, fear, shame, unresolved grief, guilt, helplessness, insecurity, numbness and pessimism. We may be more likely to experience a loss of intimacy. We may develop new physical symptoms or those we already have may worsen. For some of us, grief can affect our will to stay healthy -- we may lose the motivation to adhere to HIV treatment and take care of ourselves. To some, these reactions might be viewed as "symptoms" that signal pathology, but they can also be seen as normal responses to catastrophic events.

At the same time, there are many stories of incredible resilience -- of people who are transformed by their loss yet remain steadfast in their determination to continue to love and courageously engage with community. This, too, is part of the legacy of AIDS-related grief.

According to the Public Health Agency of Canada, 76,275 people in Canada have tested positive for HIV since 1985. And, yes, many are doing just fine. But we also know that at least 14,030 Canadians have reportedly died of AIDS-related causes. And there are others in our communities of people living with HIV who have died from other causes -- such as cancer, heart attacks, organ failure and overdoses. With each death, a network of family, friends, colleagues and healthcare providers is left behind to grapple with the impact of loss. Many of us find ourselves immersed in what feels like unending waves of loss. This becomes our new normal: We are challenged to live and cope with our loss, with our altered hopes and dreams.

I asked four people with both professional expertise and lived experience to offer their thoughts on grief and grief support. These individuals know a lot about life and loss -- and, I believe, about love.


Al McNutt

HIV+ 27 Years, Chair of the Board, AIDS Coalition of Nova Scotia
Truro, NS

When my partner Gary died 21 years ago, I felt guilty that I was still alive. And I still do. I can tell you exactly what he did before he died. There was a poster from Longtime Companion (a movie about the early years of the AIDS epidemic) on the wall, showing a scene where everyone reunites at the end. Gary and I had talked about that scene, about how when he died, everyone in his life would be reunited -- his mother, me, Rob and Doug, Ralph and Ian, and his ex-partner John. (From the four couples who spent a lot of time together, I'm the only one left.) Before Gary took his last breath, he looked at me and smiled, touched my cheek, touched the poster, and then stopped breathing.

Initially I didn't feel worthy and took unnecessary risks because I didn't think I mattered. But then I realized that I had to stay healthy to contribute to society. I decided not to give up. Many of us already feel so beat up and are dealing with lots of pain in our lives, but we have to find our own unique ways of moving beyond that pain.

I have to love HIV in order to love myself. It's part of me now. We have to co-exist. It's no longer a loss but an opportunity to live in a fuller, more meaningful way. Life is too short to be dragged down by it all.

As people living with HIV, we have so much to offer. My advice is: Try to step out and face the world head on. Be yourself. Speak out. Your story is valuable. People will listen. Try not to stay in a place of fear. We need you to become the advocates of tomorrow.

Spend time with your photo albums and journals -- and keep your vodka and orange juice handy! I have a video of Gary and me line-dancing that I replay, that still makes me cry. I know that pain can stop us from looking back, but the more you visit your story, the more crying you can do and the easier it becomes to remember. Crying is good therapy. It's important to think about our relationships and who we were in those relationships. What we shared with our loved ones matters.

I have Gary's urn on the mantle in my office, so I see him every day, along with my dad's urn and my sister Bonnie's, who died 40 years ago of cancer. Sometimes I look at the stars and wonder if my dad is up there and whether he's found Gary and Bonnie. Pain can be unbearable but facing it gives us our own teachable moments, our own therapy. Talk is also good therapy. We're not so alone in our grief if we can share our stories.

As far as my own death goes, I'm not afraid of dying but I worry about leaving my kids (even though they're now 30 and 34). When they ask, "What are we going to do without you?" I tell them: "Get on with your lives. Carve out your niche in the world. Take on your own advocacy pieces. Never forget the wonderful moments we shared -- the hugs, the stories, the laughter. ... Those memories are going to keep you going through the hard periods. When my time comes, rejoice in the fact that I've had a wonderful journey."

Dr. Alejandro Peralta

Counsellor, Dr. Peter Centre

I have seen people deal with grief as they live with chronic health challenges and deal with losing loved ones. We learn to deal with loss with the inner capacities, strengths and resilience that we have. Each person has to develop their own grief strategy.

I learned Elizabeth Kübler-Ross' five stages of grief -- denial, anger, bargaining, depression and acceptance -- but in life, the process isn't linear (nor did Kübler-Ross intend them to be). Whereas my psychotherapy training followed a more classic disease model (crisis intervention and providing support for a brief period, to reach a specific goal), I've learned to focus on where a person is in this moment and help them develop strategies from that place.

At the Dr. Peter Centre, we consciously create community. Giving and getting support is an important part of people's mental health. Professionals and community members alike build relationships and trust. We meet people where they are and accept where they are. We spend time together on a daily basis. We establish stability and work from there. We aren't about "interventions" in a traditional sense. These shared aspects of daily living are our "interventions." In this way, relating to your counsellor is not outside of people's day-to-day experience. I go to them, they don't come to me.

Depression is an aspect of grief, and I believe it is part of people's resilience. Losses are something people have to live with and depression is an integral part of letting go. Although doctors sometimes prescribe medications to people who are grieving, I believe that people have to go through this part of the process to get to the crux of their unique situation. People have to relate to all aspects of their physical, emotional, mental and spiritual parts to be well.

Our clinical team gets together at the beginning and end of each day. We discuss the issues that arise and how we are doing. Many of us have a spiritual practice, such as meditation. I practice yoga and Buddhism (even though I was born Catholic) and try not to get stuck in the material world. I lost my mother 20 years ago. You have to live through these losses. I'm concerned that we don't allow ourselves to go through these times with awareness.

I understand my role is to provide companionship to the person I'm lucky to meet. Through that, I, too, mature as a person. My skills and tools are not just my knowledge but my presence, my ability to empathize. As I lend you my strength, I need to keep building my own.

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This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
See Also's AIDS Memorial
More on Grief and Mourning


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