In her 2021 documentary Dance Me to the End of Time, South African film-maker and educator Melanie Chait has produced a truly great film. Not only for the breadth of themes it broaches – from cancer to green activism, from lesbian love to arts therapy – but also for the intensity with which she deals with these themes.
One of the hallmarks of a great film is its ability to transport audiences; to hold their undivided attention and evoke deep emotions in them. The documentary does this, as it pieces together four years of home movie footage filmed by Chait.
This very personal, award-winning film chronicles the final years and death of Chait’s life partner, London theatre director Nancy Diuguid. Diuguid died from breast cancer. The film is, of course, more than just about the death of Diuguid. It is also about the triumph of lesbian love in the face of death as well as the ecological and feminist politics of Chait and Diuguid.
In the process it elevates itself above death and disease to become a veritable celebration of life and love. Powerfully original, it is also likely to change the way people think about the food they eat and how it is produced. This is particularly important given the ever increasing prevalence of cancers.
The art of death
Dance Me to the End of Time has been enjoying a successful festival run after premiering at the Encounters documentary festival in South Africa and has won several internationalawards.
The documentary fits into a genre of film-making which focuses on disease, dying and death. This genre was popularised in the early 1990s by films which documented the death of people living with AIDS. These are films such as Silverlake Life by US director Tom Joslin and Modesty and Shame by French writer and photographer Hervé Guibert. I argue in an article on this genre that there is something more to such films than just the representation of diseased bodies and slow deaths.
Dance Me to the End of Time shows how two women face the presence and reality of death. Diuguid thinks through how, although she was losing control of her body, she still wanted to be “present in the process of dying”. Chait contends with the idea of losing her loved one. She expresses her helplessness in offering the comfort that her dying lover required:
It felt like I was playing God: deciding what to do, when. Nancy was so unlike the Nancy I had known. I only wished I could do better with the process of knowing how to comfort and help ease her anguish.
Despite the difficult conversations they have about death and the meaning of loneliness, it’s fascinating how the film eloquently demonstrates that even in the face of death, the couple was able to experience happiness. In many instances, Diuguid is filmed swimming in the ocean or dancing with their adopted son, Desmond. This film is a beautiful ode to lesbian love, an elegy of two women loving one another through sickness and health.
Ecological and feminist politics
Chait also weaves into this personal story the important feminist and ecological work that the couple did to expose the health dangers of pesticides. When diagnosed with cancer, Diuguid decided to adopt a holistic, integrated medical approach combining traditional medicine and natural methods.
The story of US scientist and ecologist Rachel Carson is woven into that of Chait and Diuguid. From as far back as the early 1960s, Carson had exposed the health hazards of pesticides, especially DDT, used to spray farm crops. Diuguid grew up on a farm in Kentucky and experienced how small wildlife would be killed days after the spraying of their farm.
Diuguid and Carson both died of cancer. By drawing parallels between their lives, the film highlights the politics of what and who is responsible for causing cancer. In its focus on the gruesomeness of the effects on cancer, Dance Me to the End of Time is itself political in dealing with ecological questions and the impact of pesticides.
The film also shows how, when Diuguid was diagnosed, she was able to use the creative arts and her lesbian identity as tools to campaign for justice and to heal others. Through an initiative called VOICES, she used expressive arts to help women and children deal with trauma in the townships of Johannesburg. In addition to the historical trauma of apartheid, townships in South Africa have had to do contend with high levels of intimate forms of violence.
Vulnerability and dignity
Even in chronicling Diuguid’s dying, the film does not rob her of her dignity and humanity.
In fact, the film celebrates her life and her important work in expressive arts therapy.
In its personal and deeply emotional texture, Dance Me to The End of Time offers a sincere depiction of how to face death and more importantly how to live life to its fullest.
Grief is an experience that everyone navigates at different points in their lives. For the past three years, the COVID-19 pandemic has impacted peoples’ lives in myriad ways and left many experiencing significant grief.
Loss can also deeply affect one’s sexuality, a concept referred to as sexual bereavement. Any form of loss, not just the loss of a sexual partner, can alter one’s sexual desire. As noted in Alice Radosh and Linda Simkin’s 2016 article published in Reproductive Health Matters, both sexuality and grief are stigmatized, which creates a double-barreled taboo. This double stigma can result in someone not feeling comfortable or confident addressing the topic.
When working with clients who have experienced loss, counselors must consider the interplay between grief and sexuality. There are few spaces where clients can address their grief and even fewer safe spaces where they can discuss their sexuality, so it is important that counselors consider how they can approach this subject with clients. This article discusses why this topic is important and when and how counselors can address the intersection of grief and sexuality with clients.
Why is this topic important?
Radosh and Simkin noted that some bereaved clients want to discuss how their sexuality has changed as a result of grief, yet they are often hesitant to do so. Clients may perceive that sexuality and grief cannot coexist. If this is the case, then they may feel shame if they have sexual feelings while grieving. Clients may also believe it is inappropriate to admit that they miss intimacy or that their sexual desire has changed. Other clients may perceive sexuality as distant and remote — something that may never again feel accessible.
The complexities of this topic, combined with counselors’ and clients’ personal discomfort, may cause counselors to avoid addressing it. This discomfort can arise because counselors are uncertain about how to broach the topic, counselors are uncomfortable with the topic of sexuality in general or the client is hesitant to bring the topic up. Although we do not know a lot about how various aspects of sexuality are affected after a loss, it is clear this is an issue that people experience as part of their normal development and growth, so counselors must be prepared to address this topic.
When to address this topic?
Although there is no right time to address this topic, counselors can introduce conversations related to the topic early in the counseling process. They could include questions about how grief has impacted the client’s sexuality on the intake form and then use the information the client provided to gently broach the topic during the first session. Counselors may also need to go slow and consider if it makes sense to bring up the topic during one of the initial sessions. For example, it may not be a good idea to discuss it in the first session if the client has a lot of shame around the topic of sexuality. In this situation, clinicians need to establish therapeutic trust and rapport before mentioning the topic. This approach will help clients feel safe enough to share their experiences.
Counselors can also ask clients to describe the various realms in their lives that have been affected by loss and grief, and they can mention sexuality as one possible area. And throughout the counseling process, clinicians can validate and normalize their clients’ experiences regarding grief and sexuality.
Because clients will move at their own pace and some may want to revisit the topic throughout counseling, regular check-ins with clients can be helpful. Counselors can encourage clients to engage in these difficult conversations by asking them to create “permission slips” to attend to forgotten or challenging dimensions of grief. Clinicians can give clients a scrap piece of paper and ask them to write out an area in their lives that is affected by grief that they find difficult to discuss. Another option is for counselors to write down overlooked topics related to grief and sexuality — such as dating, desire and arousal, physical changes, ways to talk about grief with a partner — on a sheet of paper and then ask clients to choose a topic from the list they want to discuss.
How can counselors help clients?
There is limited research on how to support clients’ sexuality in the context of grief. Formal interventions, however, may not be as important as the compassionate environment and empathic presence a counselor provides. Empathic presence can help clients introduce difficult conversations at their own pace and on their own terms.
Psychoeducation can also play an important role in counseling this population. For example, counselors can share that for some clients, sexual desire and arousal increase after a loss while others have the opposite experience. Providing education around the different reactions people have to grief can validate clients’ experiences and help them connect with the ways they may be experiencing grief. Counselors can also teach clients that grief is not just relegated to the cognitive or emotional domain; our bodies carry and process grief as well, and in this way, our bodies grieve. Providing this education to clients may allow them to feel relief that their somatic reactions surrounding sexuality after a loss are valid.
Another area of psychoeducation that could be valuable to clients is the identification of their grieving styles. The Grief Pattern Inventory is a tool that can help clients gain insight into how they are approaching the grief process. (For more, see Kenneth Doka and Terry Martin’s Men Don’t Cry, Women Do: Transcending Gender Stereotypes of Grief.) Understanding how a person is grieving can help the client and counselor gain valuable insight into the client’s grief process. Intuitive grief is an emotional style of grief in which emotional expression is valued, whereas instrumental grief is a cognitive style of grief in which problem-solving is valued. According to Doka and Martin, a client who identifies as having an intuitive style of grief will prefer a space to emotionally express the wide range of feelings that emerge when considering the intersection of sexuality and grief. In contrast, a client who identifies with an instrumental style of grief may prefer using specific techniques to reengage with their sexuality because they may view the changes in their sexuality after a loss as a problem to be solved. Counselors can introduce this concept to clients and invite them to consider how their grieving style may be affecting how they approach their sexuality after loss.
Finally, creative interventions can be a powerful way to help clients navigate these issues. Counselors can invite clients to write themselves a permission slip to engage with their sexuality in whatever way feels appropriate to them. For example, they might write, “I give myself permission to lean into the feelings that arise when I consider how my sexuality has changed in the following ways.” Clinicians can also encourage clients to create a grief playlist in which they share songs that help describe or capture the feelings surrounding the areas of their life that are affected by grief (including sexuality). Clients could share their grief playlists with their partners and identify how their grief experience is similar or different. Overall, outward expression of loss can help validate the complexity of feelings that arise when navigating this double-barreled taboo.
Addressing personal biases
When working with this population, it is important to be mindful of biases that both the client and counselor may have about grief and sexuality. Some common biases include the assumption that sexual desire disappears after a loss, sexuality is not appropriate to discuss after a loss or having sexual desire after a loss is wrong. To address these biases, counselors can use reflective questions and journaling prompts that ask individuals to reflect on what they have been taught culturally about grief etiquette, sexuality and scripts surrounding what is normal after grief. Again, some might feel judgmental of a griever whose sexual desire and/or arousal has increased after a death. However, addressing our own biases will help create a hospitable environment where a client is met with nonjudgment.
Counselors play an important role in empowering clients who are grieving. Even though we live in a grief-avoidant culture where we shy away from pain, counselors can create a refuge of hospitality where we can openly acknowledge what is uncomfortable. It is in our power and our scope of practice to gently remind clients that it is OK to talk about the intersection of grief and sexuality and to meet our clients with compassionate curiosity and encourage them to grant themselves permission and space to grieve and embrace their sexuality after loss in whatever way makes sense to them.
— Sex might help us cope – but he has lost interest
We have had seven happy, loving years together. But I’m feeling the need for physical comfort
By Pamela Stephenson Connolly
My partner and I have been in a loving and happy relationship for seven years. During the past two years three of our parents have either died or been diagnosed with a terminal illness. We remain close but physical contact has become less frequent and meaningful. I find sex a cathartic way to deal with the stresses we have faced, and a way to demonstrate our closeness, but he has understandably become reluctant to be intimate. I feel our need for sex has a different purpose and miss our shared understanding of what closeness means for us.
Grief certainly can negatively affect a person’s sexual response and many people find that recovery can take quite some time. Occasionally, bereavement develops into depression, which in itself can shut down sexual interest or functioning. It is unfortunate that you and your partner are having different sexual reactions as you work through loss and try to heal, but recognise that you are simply experiencing different sexual responses to grief and, if possible, share those feelings with each other to feel more heard. Grief counselling could be very helpful. Your bereavement is relatively new, but if healing does not appear to be progressing it will be essential to seek help. At any point in a relationship it is extremely common for sex to hold different meanings for each partner. Take heart – it is reasonable to maintain hope that there will eventually be healing and a resolution of your current sexual issues.
All humans experience loss. This loss can include the death of a partner or spouse. Grief inevitably follows during the bereavement period. What is not commonly talked about is the reality of sexual bereavement. When a long-term sexual partner dies, so does one of the most pleasurable features of that connection.
For many, life brings love and sexual intimacy with a special someone. Illness and death require us to experience the journey of grieving. Responses to grief are as unique as each human fingerprint, but we all share some commonalities. The model of the 5 stages of grief, outlined in 1969 by Dr. Elizabeth Kubler-Ross, is well-known for normalizing what humans encounter over time after a loss.
What is sexual bereavement?
What isn’t so recognized is what is known as sexual bereavement. This is the grief that relates to losing sexual intimacy with your long-term spouse or partner. It may come after the death of the loved one. It can also begin before the loss as their health declines.
Our sex lives are private matters. When we subsequently feel deep sadness when our life companion dies, identifying the loss of the profoundly close sexual attachment once shared can be difficult. In addition, older adults statistically lose their spouses at a higher rate than younger age groups. Sexual bereavement, in turn, is a part of grief seniors may not be talking about.
What we know about sexual bereavement
Research in the area of sexual bereavement is sparse. In 2016, the term was coined in a small study of 104 older women, calling it “disenfranchised grief.” This seems to be the only formal study on what seems to be a common occurrence after loss.
One conclusion noted in this peer-reviewed research is that people aren’t talking about sexual bereavement because, as a society, we don’t recognize that older adults are sexually active beings.
What are the barriers to the discussion?
Baby Boomers are starting to shine a spotlight on the fact that seniors do have sex. The old media image of the asexual elder is giving way to a more accurate one of the sexually active senior. Scientific research is now following suit.
Previous sexual wellness studies typically had an age range that did not include those over the Medicare benefit age. Times are changing for the better as evidenced by the increased numbers of sex studies embracing the older population.
Another reason sexual bereavement isn’t commonly spoken about is that sex is an intimate topic. Older adults tend not to talk to their primary care providers about it, and primary care providers typically don’t ask.
Given that professionals are hush-hush about sexual wellness, how safe do you feel in sharing about the loss of sex in your life with your family or friends?
Until recently, research and discussions have primarily focused on a married, heterosexual experience of sex and the loss of intimacy after a death. If an individual is cohabitating or LGBTQ+, and possibly polyamorous as well, there is virtually no relevant public dialogue with which to relate. Any combination of these barriers can be devastatingly isolating.
You are not alone
Sexual bereavement is a legitimate grief response. Nowadays more people are saying it out loud. With the accessibility of the internet, personal story blogs and virtual support groups specifically addressing sexual bereavement are growing in number. Book publishers are giving voice to older authors telling their stories of love, sex, and loss.
Am I normal?
Because grief and bereavement are complex journeys, responses and behaviors can manifest in ways that may be uncharacteristic of one’s baseline personality. Grief tends to undermine decision-making processes and warp the sense of normality.
For instance, grief can pour water on all sexual fire an individual usually has. Energy typically spent in intimacy is now being rerouted to the hard emotional work during bereavement. So, while sexual bereavement is there as an emotional reality, physical sex drive may be absent.
Another authentic possibility within grief is a noted increase in sexual desire. This can be extremely shocking when a long-term sexual partner is gone, and one is left feeling a strong need to connect sexually.
According to science, it can be normal to feel the need to fill the void left by loss with sex. Orgasms and physical touch typically increase dopamine levels in the brain which elevate optimism and calms the nervous system. Oxytocin, the so-called “love hormone”, is also found in the intoxicating hormone cocktail produced with sexual pleasure. It stands to reason that having a rise in libido is the body’s way to seek pleasure when grief brings little.
Steps for healing
Accept your feelings around loss of sexual intimacy as both normal and appropriate.
If your sex partner is still alive but is unwell and unable to perform sexually, talk to them and find other ways to support intimacy.
Don’t compare your loss and bereavement to others.
Allow for time to grieve without outside timetables or agendas.
Identify one close person in your life with whom you feel safe and talk about your sexual loss.
Seek professional grief counseling or a grief support group, either online or in person.
If you experience physical sexual dysfunction during your bereavement, speak to your primary care provider. What may seem a normal part of grief may be a treatable medical issue separate from the grief response.
Grief and clinical depression are not the same. Speak to your primary care provider if you suspect mental health changes.
Grief is a complex human experience; so is sex. Sexual bereavement may arrive and complicate the process further. With gentle acknowledgment and conscious processing, this too may be overcome. Remember, you’re not alone in your natural human grief journey.
Sex after pregnancy loss is not just sex. It’s complicated sex.
For starters, there’s the whole grieving thing. Can you – should you – experience pleasure in the middle of grieving a loss? If you had infertility before or after your loss, sex might become a matter of getting down to business. You might be feeling conflicted about your body because of your loss. Maybe you’re trying to come to terms with your postpartum self. Plus – hormones. A lot of them. Oh, and did I forget to mention that you and your partner might be on completely different wavelengths on when, how often, and whether to try for a baby or to prevent?
Like I said. Complicated.
Before we break down why sex after pregnancy loss is complicated – and the phases your sex life might go through – let’s get down to basics.
When it’s safe to have sex after pregnancy loss
You may be wondering when you should start having sex again. The answer to that is largely personal based on all the circumstances of your loss. However, the first step is always to make sure you’re cleared by your provider to resume sex. If you had an uncomplicated, early miscarriage, your provider may OK you to start the next cycle. You need to avoid having sex while your cervix is open to reduce your chances of infection. You should not insert anything into your vagina for two weeks following your miscarriage.
If you had a complicated or later loss, your doctor will likely recommend you wait longer. For stillbirth or live birth ending in a loss, you may need to wait a full six weeks. A general rule of thumb: Wait until your bleeding has stopped. Again, factors such as if you had surgery, how far along you were, and if you experienced complications can affect how long your provider will tell you to wait“All About Sex and Intimacy After a Miscarriage or D and C,” Ashley Marcin, Reviewed by Valinda Riggins Nwadike, MD, MPH, Healthline Parenthood, February 29, 2020..
When sex feels safe again.
Sex is vulnerable. And when you are already in a tender state of grief, sex can be triggering. You might be reminded of when you got pregnant with your baby who died. You could be unsettled wanting to get pregnant, but then terrified of getting pregnant. Your relationship might be a little more fragile than it once was. There are many reasons why it can be hard for both you and your partner to be in the mood.
The phases of sex after pregnancy loss
Sex is as individual as the couple. But when it comes down to doing the dance, there are a few stages loss couples often go through when it comes to physical intimacy.
You might hit all of these in rapid-fire succession – or you may skip quite a few. But you’ll probably experience at least some of the following stages:
Don’t even think about it.
You might know you’re in this stage when you make sure your partner never sees you naked, just so they don’t get any ideas. You may feel panic when they start to touch you or instantly shut down. You may not come to bed until they are fast asleep. Or you may just frankly tell them, “Don’t even think about it.” You could feel anything from simple disinterest to complete repulsion. Whatever the cause, whatever the effect, sex is the last thing you’re in the mood for.
Have sex – then cry.
Maybe it’s been a day, a month or a year, but you finally feel ready. Sex feels not only okay, it feels good. You feel close with your partner, and for at least a little while think this was a good idea. And then it happens … you’re triggered. Maybe you’re remembering having sex to get pregnant or having sex while pregnant. Or maybe it’s nothing that cerebral at all. You just know that one minute you were having sex. And the next, you’re crying.
I want to. But physically, I can’t. Or it hurts.
Emotionally you might be ready to hit the sack with your partner again, but physically your body is saying no. Perhaps you haven’t yet gotten the clearance from your doctor. Or you have a wound, such as a tear or incision that is causing extra pain. Whatever the case – if you are emotionally ready for sex, but it’s not safe physically, explore some alternatives to help you achieve the intimacy you want with your partner.
Don’t get pregnant, don’t get pregnant, don’t get pregnant.
Two of your most basic instincts – procreation and survival – go head-to-head in sex after pregnancy loss. On the one hand, you might associate sex with your desire and ability (or inability) to have a baby. And on the other, you may feel like there is absolutely no way you’d survive another loss. The resolution: Strict lockdown on all things baby-making. Condoms? Check. Birth control? Check. Ovulation predictor kits used to prevent sex during ovulation? Check. You want to have your baby. But because you can’t, right now, you just need to focus on surviving.
I feel so numb, I just need something to make me feel anything at all.
When people talk about grief, they almost always associate it with sadness. But you know that sadness is sometimes preferable to not feeling at all. Sex provides a bit of an escape from the numbing. For a short time, you can feel something, anything.
I have a super complicated relationship with my body right now.
Chances are, you want to feel sexy and confident in your skin. But a loss of a child in pregnancy or after can seriously mess with your relationship with your body. You might feel angry at it for “failing” you. You might feel like it doesn’t deserve to feel joy or pleasure when your baby is gone. Or maybe you are just dealing with your body looking and feeling completely different. You may have scars that remind you of your loss that you’d rather not expose. Sex might expose areas you are already feeling particularly vulnerable.
Ready to try again for a baby.
And by ready, we really mean not ready at all – but you figure it’s time to start. If you didn’t deal with infertility before, this stage might look a lot like casual sex. Just without any protection. What is not the same, however, is the obsessive thinking afterward about whether “this was it.” And before, you likely weren’t quite this compulsive over the next two weeks checking for pregnancy signs.
Check ovulation. Text husband: “Sex, now.” Transaction occurs. Legs in the air. Then do it all over 48 hours later.
If you don’t have time for casual baby-making, or you have dealt with infertility before, your version of sex after loss might look a lot more regimented. And frankly, not as fun. Because conceiving again usually means having sex regardless of your current mood. On the one hand, this focus on sex and timing gives you something to focus on besides your loss. It makes you feel like you have some measure of control. On the other hand, it often feels like a transaction, one your mind and heart can be absent for, as your body only is required. While regular sex can be good for your partnership, scheduled sex like this can be draining for you both.
I want sex because I need to be close to my partner.
You and your partner are both grieving, and one thing you need right now is to feel a close connection. You need to know that somehow, you’ll get through this together. Both men and women can find comfort in an act of intimacy during grief. Sometimes, it’s the one way you can communicate your love for each other when words fail.
Sex after pregnancy loss is complicated.
As you work to figure sex after loss out, give you and your partner lots of grace. You have the right to wait however long you need to or want to. Have clear communication with your partner on your expectations and show your partner the same respect. It can take a long time to physically, mentally, or emotionally be ready to have sex after pregnancy loss. Give it time.
While it is complicated, sex after pregnancy loss is worth having.
Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.
But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.
Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths.
For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.
A Better Way to Die
Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders.
If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife.
When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says.
Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving.
Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”
Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.
In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.
“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.
Preparing for the Inevitable End
Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.
Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.
There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard.
Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.
When COVID-19 first hit Chicago in 2020, essential worker Elias Renaud texted his sister and a good friend from the bus on his way home from his job at a grocery store.
“If something happens to me, this is where I want things to go, this is what I want done,” Renaud, who uses the pronouns he/him, remembers telling them.
The 44-year-old transgender man, from Edgewater, drew up a living will with the cautious hope that when he dies, his body would be treated with dignity.
“I think by the time I die, there will be a lot of people doing death work that will have had experience with trans bodies or will be trans people themselves, or nonbinary people themselves,” he said.
For trans people like Renaud, as well as for nonbinary people, life comes with its own set of difficulties. But so does death.
As the death care industry grapples with changing cultural attitudes and questions on how to respectfully lay to rest those who identify as trans or nonbinary, a South Side-based LGBTQ community center called the Brave Space Alliance is set to launch the final portion of its Dignity Project this month, completing an umbrella of services that aim “mainly for violence prevention, and to perpetuate dignity in our communities,” said interim CEO Jae Rice, whose pronouns are he/they.
The project includes $400 microgrants for trans people in Chicagoland, a name change clinic and a funeral fund that will give up to $6,000 to cover funeral and burial costs for trans people. The funeral fund is the first of its kind in the country, they say. And beginning this month, Rice said, the Dignity Project will be providing living wills for trans folks in the area as well.
“So at the time of their death, they will have something that’s on record to show how they want to be buried, how they want to be presented, what they want to be buried in, their name that they want to be called — all that stuff,” Rice said.
Multiple conversations with experts unearthed how end-of-life issues become more pronounced for trans and nonbinary people, including deadnaming, misgendering, gendered death care and legal documentation, and how they play out in various institutional settings: funeral homes, the medical examiner’s office, the media and more.
“Deadnaming refers to when you refer to a trans or a nonbinary person by a name that they no longer go by. Often this is their birth name, or it may be their legal name. And this happens either on purpose or accidentally — intention sometimes doesn’t matter,” said Aster Gilbert, manager of training and the public education institute at Center on Halsted, a community center that advocates for LGBTQ health and well-being.
Misgendering similarly refers to when a person is referred to as a gender that they do not identify as. A trans or nonbinary person’s lived name and gender might not match their legal name and gender markers because of what constitute expensive and time-consuming legal transitions, and the anxiety and emotional distress that publishing one’s name under a newspaper of record may cause.
“If there’s a person who was found (dead) and you only have their legal documentation, that may not reflect who that individual actually is, because we’re all required to have legal state and federal documentation that may not have anything to do with our lived realities,” said Gilbert, whose pronouns are she/they.
In a statement to the Tribune, the Cook County medical examiner’s office said the office “treats every decedent in our care with dignity and respect. The loss of a loved one is tragic in itself. When a transgender person dies without having updated official records, their loved ones can face additional challenges that make the loss even more painful.”
That being said, the medical examiner’s office follows the direction of the Illinois Department of Public Health. “The decedent’s gender is reported on their death record or death certificate as the person was officially recorded while alive,” the statement continued. “So, if she was recorded, for example, as female on official documents (i.e. birth record, driver’s license) then that is how she must be recorded at death … We are very sensitive to the concerns of transgender persons and their loved ones, and do our best to respect their wishes to the extent that the law allows us to do so.”
In 2021, the Illinois Vital Records Division of the state health department added a new option to its system: an “X” gender marker in death certificates, which prints as nonbinary.
But though the gender markers in passports and Illinois birth certificates also allow people to choose a gender-neutral option, according to Illinois Legal Aid Online, that is not yet the case with driver’s licenses. Although Gov. J.B. Pritzker approved a measure in 2019 to include nonbinary gender markers on driver’s licenses and state ID cards, the new option won’t be available until the secretary of state’s current technology vendor contract ends in 2024.
Rice said that Brave Space Alliance and Southsiders Organized for Unity and Liberation will work with the Cook County medical examiner’s office and funeral homes to make sure trans people are not misgendered or deadnamed during end-of-life care.
“That is something that our community doesn’t have the pleasure and privilege to think about, is after death care. We’re just trying to survive right now,” Rice said. “The launch of the Dignity Project is to instill dignity while you’re here. And after death as well.”
Death work is necessary, especially for the trans community, said Phoenix Kelley, a death doula based in Jackson, Michigan, whose pronouns are they/them.
“Many funeral directors will go with the family of origins’ wishes, which often means that a trans person is misgendered, deadnamed, dressed as the gender that they did not identify with during their viewing and listed like that in their obituary,” Kelley said. “So one of the things that my work is trying to do is to normalize thinking about what you want your death and after death to look like.”
Kim Sabella, the funeral director at Wolfersberger Funeral Home in O’Fallon, Illinois, near St. Louis, said she encountered a situation recently in which the parents referred to their child who had just died with she/her pronouns, whereas some of the deceased person’s friends and peers used they/them pronouns to refer to them. So, she had to take a step back and confirm what pronouns the decedent preferred in life.
“The bigger issue here is how we all, in our workplaces, need to be more sensitive and more aware. And so not be afraid to just sometimes simply ask the question,” Sabella said. “I think that we just have to stop making assumptions about everybody but especially people that are already disenfranchised … We just have to be kinder humans. And I just think that’s just more important than ever before. And especially when we encounter (others) in the midst of grief and loss.”
Kelley, the death doula, strongly recommends that trans and nonbinary people create an end-of-life care document, naming someone specific that has permission to make medical decisions, and to get that document signed and notarized so that it’s a legal document.
“Even before I started doing any training to be a death doula, I knew that preparing a will or some kind of document for your end-of-life is really important,” they said.
The Illinois Department of Public Health offers online resources to those looking to prepare an advance directive, designate a health care proxy or draw up a living will.
At the Center on Halsted, Len DeWilde of the Transmasculine Alliance Chicago does a workshop about the legal steps trans and nonbinary people can take to preserve their own identity in the event of death. This includes sharing information about the different forms and designations that can be filled out, “especially if your next of kin are either not aware of your gender identity, wishes, or you’re afraid that they would actively try to kind of undo it in your death,” said DeWilde, whose pronouns are he/him. The next workshop will likely be held in December or January, he said.
But for some, delving into these documents can be daunting.
“The conversations surrounding what I would like to happen once I’m gone have been happening for a while, but in terms of really putting that onto paper — I think that’s where a lot of the fear comes into it,” said Chicagoan Sydney Kamuda, a 25-year-old nonbinary artist whose pronouns are they/them. “It’s another fearful idea that you are entering into a space where, again, I’m going to have to explain my pronouns and why I look a certain way.”
One of the reasons death work is necessary, Kelley said, is because of the rates at which trans people — especially trans people of color — are killed.
“We have this sort of this community knowledge that it’s very possible for us to die and especially to die suddenly, but taking the time to make those preparations can be scary,” Kelley said. “Even for me, because it makes it feel more real.”
“We say ‘at least’ because too often these stories go unreported — or misreported,” the Human Rights Campaign notes on its website. “In previous years, the majority of these people were Black and Latinx transgender women.”
Since the Human Rights Campaign began tracking fatal violence against trans people in 2013, it has recorded 12 deaths in Chicago, all of which have been Black transgender women.
Deadnaming and misgendering trans people, Rice said, translates into not having an accurate count of trans deaths and a consequent inability to fully understand the violence trans folks face — “because so many trans deaths are not labeled trans deaths.”
“But when we don’t know that these people who are dying are actually trans folks, then how are we going to get toward any sort of actual liberation?” Rice asked.
Nonbinary artist Kamuda, who was 16 years old when their father died of complications from lung cancer, said this close experience with death has made them think about their own mortality. Death, they said, is one of the singular unifying factors in everybody’s lives.
“The main thing that I think about is how I’m treated now, versus how I’ll be treated once I pass on,” Kamuda said. “My only hope is that I have people who are around after me who can advocate for me.”