‘Til Death Do We Part: Intimacy During And After Illness

[Start]
Esther: So, people it’s the middle of the afternoon and you have been listening to all kinds of aspects of the human condition; and yet there is one primary dimension of our lives that has basically been completely left out. Which is?

Audience: [Inaudible]

Esther: Thank you. I mean you know the ancient Greeks, they understood that every Thanatos, the god of death that there also is Eros, the God of love, of unbridled feelings and of desire. As a couples and family therapist, I often work on the perilous edge between Eros and Thanatos. Between fear and fascination and I help people, or I facilitate conversations about their sexual and their relational lives.
[00:01:00]
What’s interesting is that in my practice when I think about the word death, I actually don’t think about it in the complete literal sense of the word. I think of it as a concept and as a metaphor. As such people will talk about many deaths, the death of love, the death of intimacy, the death of desire, the loss of identity, the death of pleasure and from that place I work with them to resuscitate. Even if it’s resuscitation with intermittent eclipses. So, that they can once again experience aliveness, vibrancy, vitality, renewal, energy, all of which I call erotic intelligence. So, I want to talk with you about that definition of eroticism. Which goes way beyond the repertoire of sexual techniques or a bunch of unbridled urges. But really looks at it from the mystical and the existential sense of the word.
[00:02:00]
What does it mean to maintain a sense of aliveness in the face of death? In the face of adversity, in the face of loss and trauma and grief and all of that? That’s a paradox that people often don’t think they can put together. It’s as if these two things should not meet and yet, I’m sure in this room there are people who have experienced their most intense aliveness in the midst of intense grief as well. For me, the personal connotation for that relates to my own growing up. So, I grew up in Antwerp in Belgium and I was a child in a community that was entirely made up of Holocaust survivor families. In Antwerp, I always thought there were two groups of people in my community those who did not die and those who came back to life. You can apply this to all trauma, this is just my context.
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But the people who did not die and who survived often lived very tethered to the ground, without trusting, with the world being a dangerous place and therefore without the ability to experience pleasure. Because you cannot experience vigilance and pleasure at the same time. You cannot be in the grip of worry and experience the freedom and the unselfconsciousness that goes along with pleasure. But the people on the other side, those that came back to life, taught me something very important about what it means to maintain a sense of connection to life, to hope, to possibility, to freedom in the midst of imprisonment and slavery for five years. From that place on I learned something that was really very important, that my dad also talked about when he fell in love with a woman in the midst of the camps. It’s that it actually maintains a sense of dignity and humanity to continue to talk about sex in the places where they try to dehumanize you the most.
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So, this is now what I focus on. But I focus on that in the midst of a landscape of relationship that is massively changing, and I think I want to give you a brief summary of what I think is happening and then how some of this intersects with illness and death and dying. But I will let it to you the experts in this field to make the connections between the micro and the macro. You know one of the biggest changes that I think has occurred at least in our societies, I was in Mexico, Romania and South Africa recently and when I want to say the past, it’s not the past in other places, it’s actually very much the way people still live. But in our quarters, we have shifted from a life that was deeply structured. Structured means that they were tight knots and that we could not leave so easily.
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But in that communal life we were given a clear sense of identity, a clear set of rules, a clear set of gender specific roles which implied everything having to do with caregiving and illness by the way and a responsibility for the well-being of others. We knew where we belong, and we had a good sense of continuity. You didn’t have to worry or to ask yourself, where will I die? How will I die and what will happen when I get buried or will I be buried, or will I be in ashes? Because your religious structures with whom you grew up basically told you what was gonna happen to you and you don’t argue with divine Commandments.
From a place of certainty and clarity but zero personal freedom, we move to urban living where we have unprecedented freedom and unprecedented choices and options. Everything that used to be rules, today is a freaking negotiation.
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It all has to be figured out and that figuring out has created the situations where the burns of the self, have never been heavier. With a lot of uncertainty and a lot of self-doubt about knowing what is the “right thing” to do. For me, that requires a good amount relational and personal self-awareness and that’s not an obvious thing to do. Now when this happens, the topic of today for me was till death do us apart. But my reality is that I work with relationships, marriages, couples and it is no longer till death do us apart, it’s still love dies. The threshold has shifted, you can be married for 25 years has a complete system of interdependence, separated breakup or divorce and get sick two years later and anything you thought was going to happen, you have a disruption in the narrative flow of your life. You thought you knew what was going to happen but it’s not.
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Marriage was always a pragmatic institution, it was primarily for children, economic survival, companionship, social status, succession and then we turn marriage from an economic arrangement into a romantic arrangement. Now, it was based on affection and on trust. We brought love into marriage, we brought sex to love and we brought and connected sexual satisfaction with marital happiness. Happiness by the way used to belong to the heavens. You suffered when on earth and if you did a good job you could be rewarded afterwards. But no, common mortals that we are we brought happiness down, first it was an option now it’s a mandate. So, we no longer divorce just because we are unhappy. But we divorce because we could be happier. That’s a major shift when you work with relationships in which there is going to be crisis and distress and illness and death. Now what also happens is that intimacy, also fundamentally changed its meaning. You know intimacy used to be, we share the vicissitudes of everyday life together, including those that we’ve been talking about the whole day.
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But now intimacy is ‘into me see’ meaning that we are going to share with each other our intimate life not our hurts. That’s a whole other thing and that has created a situation where the romantic ideal at this moment is one in which we are asking one person to give us what once an entire village used to provide. Now you add to that stress and distress and illness and vulnerability, that’s what starts to happen. Now what happens there is this, people continuously ask me. What is the fate of desire in the long haul? You know the long haul as we’ve just been told keeps getting longer. Now what then becomes the fate of desire, when we are not in our typical story? What happens to sexuality in this context? It’s not just in this conference that it takes till now to have the word sexuality mentioned.
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If I want to look at a family medicine literature as a systemically trained family therapist that’s the first literature I will go to. Look, sexuality is absent from the literature. It’s very simple it’s absent from the health literature much of the time too. We don’t like to include sexual health as part of overall health, let alone do we include sexuality as what happens to us when we get sick. What is expected is that we stop thinking about it. It’s taboo, how can you think about pleasure, sensuality, tenderness, touch, fantasy, aliveness, curiosity? All of these erotic ingredients when you are in the midst of death? That’s exactly what we do but it’s not okay, so we don’t say it out loud. So, the person who is ill is the person who is asking themselves, you know am I still attractive? Can I still give pleasure? Can I still receive pleasure? Am I still desirable? If I ask you, if I’m desirable and I am not well, please tell me yes. Tell me yes and lie to me, because a good amount of self-deception goes a long way.
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There are moments when you do not want to be truthful and transparent because it is my staying connected to my imagination, to how I think of myself, to how I have known myself that allows me to not stop loving myself. It is essential to the intimate connection between two people but on the part of the partner, I think that that’s where the thing is more interesting. When I ask people all over the world, when do you find yourself most drawn to your partner? People typically will say when I see my partner on stage, on the piano, on the horse, in their element, competent, in the studio, every time it means when my partner is radiant, self-sufficient, doing their thing, good at it, passionate about it and all what these things imply is, they don’t need me.
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When you need me, I can be very loving, I will take care of you. I will feel responsible for you, I will worry for you, I will attend to you. But love and desire they relate and they also conflict and herein lies the mystery of eroticism. It’s very difficult to experience one of the fundamental things in sexuality which is surrender loss of control, when you are next to someone who you experience as fragile and feeble because once I’m looking out that you are okay, I cannot go inside myself and let go. That becomes part of the systemic de-erotization of a relationship. Now if you think sexuality inside the relationship is missing from the literature, can you imagine what happens when desire goes looking elsewhere? Meaning infidelity, that is the real unmentionable in that moment and yet I have seen so many patients in my office who literally come out of the surgery.
[00:12:00]
Get their reconstructed breast or God knows what they have experienced and just throw themselves in a massive rump. Not because they don’t love their partner not because they’re not deeply grateful for their partner not because they want to leave the partner, but they want to leave what they have become. Not because they want to find somebody else but because they want to find the last parts of themselves. They cannot imagine doing that in the same place where they have just experienced all what they’ve gone through. Often, it’s a short thing, it’s quite reckless and it goes. Of it doesn’t get interpreted far from that. On the other side, the same thing happens. What happens when you go three times a week to the nursing home? When you know that it’s for the long haul. What are you going to do with yourself in that moment? You know it’s like one of the first time somebody made me think about it like that, a much less glamorous side the one that helps you and that there is deep loyalty sometimes in people who are not at all faithful.
[00:13:00]
When the man said to me, is it still called cheating when the person no longer knows your name? That’ll get you going for a while, right? You know because it was this distinction it was actually the idea that this experience on the outside is what allows me to do what I need to do on the inside. It’s this idea that it is not just the kind of cliché’, ultimate betrayal but it is sometimes a deep rebalancing of the relationship. If the person who is sick, it is an experience of reclamation for the person who is taking care of the sick person it is often an experience of balancing and stabilization. To me, because it’s not really my field but I know that I’m not thinking about the specific illnesses, but I am looking at how a vulnerability, a crisis, a disruption in a relationship will recalibrate the complementarity of a relationship.
[00:14:00]
Every relationship straddles complementarities, multiple ones. But there’s one that to me really stands out. That is the complementarity between security and adventure between stability and change, between familiarity and novelty. All of us have two fundamental sets of human needs. We are born with that, we are born with a need for connection and with a need for freedom, with a need for togetherness and with the need for separateness. All of us will come out of our childhood, some of us needing more protection and some of us needing more freedom. We will often mate with a person who is on the other side. As a result, in many relationships there is a fundamental dynamic that is this. One person, more in touch with the fear of losing the other and one person more in touch with the fear of losing themselves. One person more in touch with the fear of abandonment and one person more in touch with the fear of suffocation. [00:15:00]
But illness for the first time brings the fear of loss of both at the same time. That totally creates a disruption in the in the balance. Now I want to play you a very short clip from my podcast, that was mentioned, where should we begin because it’s three-hour sessions. Where I invite you in the office and I speak in this case with the young couple he’s in his late thirties, he has had early onset of Parkinson’s, it’s evolved rapidly. He has three young children and the reason this gripped me is because the wife said to me, I don’t just want to go to these caregivers’ groups, I don’t just want to be a caregiver, I want to be his wife.
If I can think of myself as his wife, I can think of him in many other things than just the new definition that we have been put under that is supposed to become not just a situation but an identity. So, let’s listen.
[00:16:00]
Podcast Female: We were looking so forward to this year because the little one was gonna get bigger and that’s so you know it’s easier to go out and babysitters, everything gets easier once they’re out of diapers and closer to sleeping through the night you know and we thought you know we’re gonna do all these things again. Now the energy is not there, so we have to also figure out how do we rebalance. Now that every time it feels like we rebalance, then the disease progresses and so then you have to rebalance again. We’re in this constant like trying to get our feet under us and that leads to this horrible cycle of survival, survival, survival, rather than living. I don’t want my kids to grow up like that. You know I want them to enjoy things.
[00:17:00]

Podcast Esther: And are you able to enjoy it with them?

Podcast Male: Some days.

Podcast Female: He’s trying but it’s like bringing [Inaudible].

Podcast Esther: All right but there’s a difference between energy and attitude. At this point, it’s very it’s still early first day with the shock there is them what does this mean there is the how fast it is progressing, there is the I’m gonna continue normal. Then there is the new normal, then there is the unknown. There’s a lot of things to absorb here and I don’t know that one can avoid it. It is the it is what it is but then starts a new phase and that new phase is, how am I going to live with this? What can I control in a way? What can I determine and what attitude do I want to bring to this? An attitude is different from energy.
[00:18:00]
Very healthy people, physically healthy people with a terrible attitude and they are very sick people with an amazing attitude. They radiate.

Esther: Now you know sex is not just something we do; sex is a place that we go. when I went to work with one of the teams and the radiology at one of the big hospitals that were working with patients for prostate cancer, I thought to myself what would be a sexual conversation that they can have? I said you know the interesting thing is what you’re telling your patient is basically look I can’t save your ejaculations; I’ll try to save your erections. What if instead you said look you have had a sexuality that was primarily genitally focused and you’re about to discover a whole new world of sexuality that you never knew existed, because you’re going to find out that you have a whole body and you don’t just have to rely on one organ. Tell me how it goes. That is the conversation that doesn’t happen. Why?
[00:19:00]
Because so many of the doctors were male doctors who I assumed have castration anxiety. So, I have to talk with these guys about it. I told you it is the quality of our relationships that I think determines the quality of our lives. I applied it. I have never told this story. I told of it as I was preparing this talk and I figured I leave you with that. My mother passes away, my father who was quite still healthy took her to the hospital the day before. Everything was fine, basically goes into shock induced dementia. I understood that, somebody told me that such a thing existed. I did not know but it was so helpful to me because I knew nothing about dementia, but I knew a lot about trauma. What I knew is that he had no idea who he was, what he was, where he was, who I was, he was completely gone.
[00:20:00]
I thought I have to find a way to give him back his story, his narrative, his memory and the best way I can do this is not by putting him into a home which is what the pressure was about. I took him, I flew in from Belgium to the Catskills, where he had his best friend with whom he had been in the camps together. I put them together for a month. One had the head, the other one had the legs I figured that will make one whole. You know and the guy talked to him, talked to him talk to him and we basically brought him back his sense of continuity and his sense of identity. Because it was through his intimate connections with people, that he could recover health. It did absolutely nothing you know there was zero intervention, there was nothing that the doctors told me to do. There was just good old common sense and I just want to leave you with that, when you miss certain people, two things. One is, make sure that you don’t feel too embarrassed about sex in the context of illness and dying, it’s crucial.
[00:21:00]
Two, the pleasure of being with other people, it’s not just care of other people, it’s the pleasure of being of other people can give you a few more years to live. Thank you.
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