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cover of episode I Don’t Want to Be Your Caregiver, I Want to Be Your Wife

I Don’t Want to Be Your Caregiver, I Want to Be Your Wife

2024/12/9
logo of podcast Where Should We Begin? with Esther Perel

Where Should We Begin? with Esther Perel

AI Deep Dive AI Insights AI Chapters Transcript
People
E
Esther Perel
丈夫
妻子
Topics
妻子:丈夫患有早发性帕金森氏症,这给他们的生活带来了巨大的挑战。她感到无力应对,并因沟通困难和丈夫隐瞒病情而感到愤怒和害怕。她希望在丈夫患病的情况下,仍然能够保持夫妻间的活力和亲密关系,体验生活中的活力,而不是仅仅停留在生存模式。她对支持小组中将她的身份仅仅定义为“照顾者”感到不满,希望能够维护夫妻、恋人等其他角色。她承担了大部分家庭中的情感工作,希望丈夫能够更多地表达内心的想法和感受,以便加强彼此的联系。她担心丈夫的沉默并非因为没有话要说,而是因为隐瞒了一些重要的事情,例如长期以来的色情成瘾和冲动消费。她对丈夫隐瞒财务状况感到不安,这让她难以信任他,也难以享受夫妻间的亲密关系。她认为照顾孩子和照顾丈夫让她无法进入性爱的状态,只有当丈夫以自信和需求感而非依赖感与她互动时,她更容易进入性爱的状态。 丈夫:由于疾病和治疗,他大部分时间都感到身体不适,难以享受生活。他难以在支持小组中找到与自己年龄和病情阶段相符的人,也难以与那些已经退休并拥有更多时间参加康复课程的人产生共鸣。他承认自己长期以来一直与色情成瘾作斗争,担心这会让他失去妻子。他倾向于寻找解决方案,而不是处理和表达负面情绪。他将钱花在了游戏内购上,而不是色情网站上,但他承认自己的行为给妻子带来了困扰。他意识到自己需要寻找能够带给他快乐和活力的事情,以帮助他应对疾病带来的负面情绪。 Esther Perel:婚姻中面临疾病和死亡是夫妻关系和家庭关系中的主要压力源之一。妻子希望在丈夫患病的情况下,仍然能够保持夫妻间的活力和亲密关系。她担心丈夫的沉默并非因为没有话要说,而是因为隐瞒了一些重要的事情。色情满足了男性在性关系中的一些脆弱感,例如害怕被拒绝、担心自身能力不足以及无法确定对方是否享受性爱。女性的性欲与她们扮演的角色有关,当她们处于“母亲”或“照顾者”的角色时,她们难以进入性爱的状态。积极的态度比精力更重要,即使在面对疾病时,也应该保持积极乐观的心态。即使在面对无法控制的困境时,人们仍然可以选择自己的态度和生活方式。

Deep Dive

Key Insights

What are the primary challenges faced by the couple due to the husband's early onset Parkinson's Disease?

The primary challenges include the husband's physical symptoms, his compulsive behaviors, and the strain on their relationship. The wife feels overwhelmed by the caregiving role and the husband's reluctance to share his feelings, leading to communication breakdowns and a sense of isolation.

Why does the wife feel resentful when the husband is quiet?

The wife feels resentful because she worries that his quietness is not due to a lack of things to say, but because he is hiding important issues or feelings. This lack of transparency makes her feel like she doesn't know what to expect, leading to a sense of fear and resentment.

How does the husband's addiction to pornography impact their relationship?

The husband's addiction to pornography has caused significant trust issues and emotional distress for the wife. She feels betrayed and worried that he is hiding more details about his spending and activities. This has also affected their sexual relationship and the wife's ability to feel desired.

What advice does Esther Perel give to the husband to improve communication and emotional support?

Esther Perel advises the husband to acknowledge his wife's feelings, validate her experiences, and empathize with her. She suggests he should create a safe space for her to vent and not try to fix everything immediately. Additionally, she recommends using a code word, like 'glove,' to indicate when he needs to be a supportive listener.

Why does the wife find it difficult to shift from 'mom mode' to a sexual relationship?

The wife finds it difficult to shift from 'mom mode' to a sexual relationship because being in caretaking mode makes her feel selfless and responsible for others' needs. When the husband comes to her with confidence and strength, it helps her transition out of caretaking mode and feel more desirable.

What are the couple's fears regarding the future and how do they differ?

The wife fears that they will not live a fulfilling life and will remain in survival mode, while the husband fears losing his wife. These fears highlight the need for them to find a balance between dealing with the disease and maintaining their quality of life.

What advice does Esther Perel give to the couple for dealing with the progression of the disease?

Esther Perel advises the couple to continue creating joyful experiences, separate their roles as caregivers and partners, and build a support network. She emphasizes the importance of choosing a positive attitude and finding creative solutions to maintain their quality of life despite the challenges.

Chapters
A young couple navigates the challenges of early-onset Parkinson's disease, affecting their intimacy and daily life. They discuss the impact on their relationship and family, and their struggle to balance caregiving with maintaining their identity as a couple.
  • Early onset Parkinson's diagnosis at age 39
  • Impact on intimacy and daily life
  • Balancing caregiving with maintaining identity as a couple
  • Challenges of communicating and expressing emotions
  • Telling children about the diagnosis

Shownotes Transcript

Translations:
中文

What you are about to hear is a classic session of "Where Should We Begin?" with Esther Perel. None of the voices in this series are ongoing patients of Esther Perel's, and each episode is a one-time counseling session. For the purposes of maintaining confidentiality, names and some identifiable characteristics have been removed, but their voices and their stories are real.

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Support for this show comes from Amazon Prime. However you plan to make the most of the holiday season, you can do it with Amazon Prime. Whether it's last-minute ingredients and stocking stuffers or a themed puzzle to solve with the family, get fast, free delivery on holiday essentials with Prime. And with Prime Video, you can curl up on the couch, warm drinks in hand, and have a holiday movie marathon. Throughout it all, you can tune into classic holiday playlists on Amazon Music.

Whatever you're into this holiday season, from streaming to shopping, it's on Prime. Visit Amazon.com slash Prime to get more out of whatever you're into. Among the top stressors in any couple's relationship or family relationship is death and illness. When you get married, you think, I'll be with you in sickness and in health. And that's true, but you picture being old.

I have early onset Parkinson's. I was diagnosed about a year ago. This is a young couple. They're at the beginning of their life together. They have three young children and their entire life has begun to change more and faster that they can even get their head around. I just feel so...

ill-equipped to handle something that I know is just going to keep getting worse. So I know that communication is hard for me. Between not being able to get a facial expression from him when we talk to this hiding stuff, I love him so much and I want to support him unconditionally, but I'm angry and scared.

When I come home from work, there are some days when it's all I can do just to get in the door and not have to talk about anything. I believe that she deserves better than that. And the beauty of the request from the intake interview was not how should we deal with his illness. It was her saying, how do we continue to experience ourselves as young, as beautiful, as vibrant, as loving, and as sexual?

I'm not ready to just not be dead. I still want us to experience aliveness and vitality between the two of us. Please help. This is Where Should We Begin with Astaire Perel. I feel like we've been in survival mode for so long. Fundamentally, I think we have two different fears in life. And I think yours is that you would lose me. And mine is that

we wouldn't live. Just be in survival mode for so long that we're not really living. You've been good at living before. Yeah. You've been good at feeling alive before. Yes, yes. And now you are most more focused on not feeling dead? Yeah. That's a good way to put it. Yeah. That's a good way to put it. Put it in your words. I think, like personally with all the health stuff, it's... How old are you if I may ask? 39. Um...

It's like, I spend so much time doing doctor's appointments and medication and all that. It's like just finding a day where I don't feel like crap is a challenge. All the medications are to control the symptoms. There's no medication to change the trajectory of the disease. Are you doing any of your own things? Exercise. What kind?

Some boxing and swimming and running and cycling. They say the boxing is the new Parkinson's. It's a very intense workout, but it's kind of cathartic at the same time because you get to hit something. And that helps. And are you part of any type of group?

Do you have a source of support and information? We've taken some classes, informational sessions. We had one once a month for the last school year and that was very informative. As far as support group, I'm not really in one right now just because I don't feel like I'm in a place for that. Meaning?

In some ways, I just don't want to face it. So seeing people that are more advanced in the disease is a little challenging. So it's kind of like an ostrich in the sand kind of thing. Do you think age is part of it too? I think age is part of it. The average age for diagnosis is 55. So in most of these groups, I'm a good 10 years younger than everybody else in the group. 20. 20 in most cases because the average age of diagnosis is 55, but then, you know,

Most people that are in groups like that have had the disease for a while. So they're 60, 70 and higher. So finding people to relate with that are going through the same things is a bit of a challenge. The first person we talked to after the diagnosis was like,

this can be the best thing that ever happened to you. You know, it's a great time to take early retirement and do a new class every day. All these classes are offered. So I do a different exercise class every day. And all of those things are offered during the workday. So if you can't retire and you have kids who need to be at dance class and school and reading homework,

It's hard to relate to people who are retired. Yeah, yeah, yeah. And don't have little kids in the house because it's really different. They're like, it's, you know, we talked about telling our kids one day and they were like, you know, it's so hard. I had to call my daughter at college. I was like, my daughter was two. So that was a real different conversation. And you've told your kids? Yeah.

And have they changed anything about how they are with you? Or do they continue just being kids with daddy? So in general, they're just being kids with daddy. Our middle son had a bit of a hard time. He went through a couple weeks where we had told him, but he was still processing and he wasn't asking questions.

So he was going through this thing where he thought he would catch it, just like playing with Daddy. So once that came out, we kind of corrected him on that. He's not as freaked out about it. We felt like we had to tell them because they knew something was going on and we didn't want to lose their trust.

There were a lot of extra appointments and a lot of shuffling them to different care places. And they could see that the adults were all worried. We didn't want them to hear it, especially the oldest, from somebody else. So we told them a very rare story. The children's book version. Yeah. Wow.

You have three kids. You have both sets of parents. Yes. You are an only child. Yes. You are the youngest of three. All these people are part of your life and friends. I would say so. It feels a little lonely sometimes. Say more.

Because what's happening, what I think sometimes happens, is that there's such an emphasis on the physical. And on how you're doing and how you're feeling and your exhaustion and this and that, that the rest doesn't get enough attention. Not...

How you feel, not what this means for you, not how you're dealing with it as a couple, not how you are not going to classes where they keep calling you a caregiver and they forget to call you the wife. Oh, I hate that. Why do they do that? It's like the worst thing ever. That was like our whole class. We took once a month for like what? Nine months. Nine months. They called us the caregivers. We'd have caregiver breakouts. Care partner. Oh, care partner. Whatever. It's still, it's a horrible thing.

Right. So have you been able to preserve the wife and the husband? The man and the woman? The partners? The lovers? We're trying, but I think that a lot of times we just feel like we're surviving. I think you go. I think we are partly. That was quite a cue. She's good at that. I think I tend to defer to her on everything.

raising the children and that kind of thing. - Raising the children and what else? - Housework and the stereotypical house roles. - I don't think you have the language for this, but he means the emotional work. I'm in charge of connecting, having conversations.

It's my job to talk about feelings, connection, emotion, state of the relationship. I have her do all the, like she said, all the talking. The family I was raised in was, we didn't talk a whole lot. It was like, I know my parents loved me, but it was never, it wasn't said that often. And so I just don't bring it up very often. But you chose this woman.

I think in some ways it was because of that. Because she... This is gonna sound cheesy, because... It's okay, we like cheesy. But it's... I forget what the movie's called, but the "You Make Me Want to Be a Better Man". It's kind of like that. Where she brings that out of me. So... When's the last time you told her that? About ten seconds ago. So, you're gonna do it again, but this time you can look at her rather than me? "You Make Me Want to Be a Better Man"?

So while she knows the man she's with and she knows he's an introvert and she knows that he will come home and keep to himself and not speak much, at this point where she needs to feel more connected with him, she wants a little more, a little bit more of his internal voice, of what goes on inside of him, so that she doesn't feel like she has to do all the talking for her and for him.

And that's why when he begins to talk about why in fact he did leave it to her to do what she clearly calls the emotional work, I encourage him to speak that which he rarely says, but no less feels. Keep going with that. You helped me do the things that I never thought I could do. You are so amazing with the friends and family in our lives that

I kind of take that for granted sometimes. You make me get out of my comfort zone. Like today. Right here, right now. Right here, right now. Keep going. You're doing really well. You're alone. You've got no kids. We have time. You have nowhere else to be. I feel like one of the things that keeps me going is seeing you when I get home. I love that you stop everything you're doing to say goodbye or greet me when I come home. I know I don't say it a lot, but that means a lot to me.

And this is where I stall out because I can't have anything else to say. Even when I come home and I don't say a word to you, it's not because I don't want to talk to you. Say it in your own words. When I get home at the end of the day, I feel like you always try and take the time to see how everybody's day is going and check in and do highs and lows. And I know I'm not always good at participating in that, but...

It's always amazing to me that you take the time to do that. I really appreciate it. I feel like you do a lot of the things that I have a hard time doing. And I think that's why I want to spend my life with you. And if there's something that you could do better, what would it be? You may not become as extroverted as her. I don't think that's possible. But you could be more often reminding her that you actually...

I appreciate the way she goes about it. If there's something I can do better, I think it would be telling you what I see in our children, just how you bring these amazing people out of them. I think our kids are very in tune with a lot of their emotions because you help them with that. I don't do that. You help me see that I can be

a better father and a better husband just by interacting with you guys more. You bring the boundaries. I bring the boundaries. Which is good. They need that too. I'm the heavy. But they need both. You're essential too. Thank you. And actually I would say that you're one of the most appreciative husbands that I know. Really. Thanks. The thing I worry about is when you don't tell me not like the little stuff and I feel really appreciated. I worry that you don't tell me the stuff that

you're afraid of or ashamed of. Because that's what makes me resentful of quiet, because I don't know when that other shoe is going to drop. Does that make sense? I think so. She highlights a very important distinction here. I worry that you're quiet, not because you have nothing to say, but I worry that you are quiet because in fact you have something very important that you don't want to say.

And she knows the distinction between his being quiet, introverted, versus his obfuscating, hiding, something that he actually ought to let her know about. We'll be back with a session right after this. And while we love our sponsors, if you want to listen to this session ad-free, click the Try Free button to subscribe to Astaire's Office Hours on Apple Podcasts.

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So, ready to feel good and do good? You can head over to bombas.com slash Esther and use code Esther for 20% off your first purchase. That's B-O-M-B-A-S dot com slash Esther. Code Esther at checkout. Speak to that. You worry that I won't bring the big stuff to you, the things that I'm ashamed of. When she says the things you're afraid of, what are we talking about?

that for a lot of our married life, I've struggled with addiction to pornography. Like she said earlier, one of my bigger fears is that I will do something to lose her. I get that I married someone quieter, and it's not the quiet that bothers me. It's when you don't know if the quiet is not having something to say or if the quiet is hiding things. And then...

When I sense something is off, then I feel really resentful. My life is so busy. I don't want to have to pull things out of you. I just want you to tell me I can't love you or accept you for who you are if you don't share it with me. I know you worry about losing me. I worry about us not ever really sharing that and moving forward. Not sharing...

Well, a huge thing is that when he came, was on one of his medications, they told us when he went on it that it could bring out very compulsive behaviors and that he needed to call the doctor at the slightest inkling of a compulsive behavior that for most men it was sex, for most women it was shopping. And we talked about it and promised that he would

come to me, but he didn't come to me until it was really out of control. By the time he told me, and honestly, it didn't feel like he told me because he wanted to tell me. He told me because we were on the way to a doctor's appointment. He knew he needed to get the medication adjusted, and he knew I'd be in the doctor's appointment. If it wasn't for that, I don't know if he would have told me. So I got this

bomb dropped on me while I'm driving the hour to the doctors and then we were going to have our first big date night like the next day. So we had our first like great big night out honeymoon, not honeymoon, anniversary and I'm still processing that he spent our savings and that I don't necessarily believe what he says he spent the money on. So

I never know if I've gotten to the bottom of it because I know he's ashamed. I know he's afraid of losing me. He has me. You have me. I'm left in this state of fear, not knowing what is coming or is there more than I need to know. And you've had that conversation? Mm-hmm. And this is...

This is where it usually stops, right about here. And he says he's sorry and I don't want him to feel guilty. He should feel guilty. Why shouldn't he feel guilty? Well, and this is part of the problem. I feel like... No? I mean, isn't that the... Amongst other things, but isn't that one appropriate response to when you've done something that's... It's true. I just... I feel like I have to be so perfect when he comes to me about something because I don't want to shut him up more.

So if he feels bad about something, you can't get mad because... Yeah, and then I don't get to be mad. That's the thing. I feel like I should have at some point... I didn't put the kids in a single summer camp. I had all three of them 24 hours a day, seven days a week, all summer, even when he was out of commission for more than two weeks.

because that we didn't have the money because of whatever he spent it on. And I don't get to be mad because I have to be a safe place to tell things to, you know? This is a quintessential moment that shows what she means when she says, "I do the emotional work." He should feel bad. It's normal that he should feel guilty.

But if he feels bad, then she feels that she has to go and attend to him, to make him feel better, to bring him up, to pamper him, which then usurps her possibility of actually say how mad she is about the fact that he squandered their entire life savings. And so she's caught because she has nothing to gain from being mad because then she will feel so bad that she has to take care of him. And on the other hand, she needs a room for her feelings as well.

This is an interaction that I think so many of us recognize. I do resent that, but I don't know how to move past it. Because, well, are you worried that if you tell him you're mad that he's going to go in his closet? Yes. Yeah. Is that, do we know that for a fact? Or are you protecting him from himself all the time, but we actually don't know? I think any strong emotion from me and he automatically shuts up. That's been my experience.

Any negative strong emotions? Yeah, I mean, it doesn't even have to be directed towards him. I mean, I've been grieving all summer because my two best friends, after the diagnosis, just totally ghosted on me. So when he says we have a community around us, I don't feel that. And that's not directed at him, but just me being angry at them makes him shut up.

To the point I finally had to say to him, like, I feel like you're not on my side. He said, oh, I am on your side. I just want it fixed. I just want you guys to all be friends again. Yeah. I did say that. But I want to understand something. So when she becomes more vocal or more intense or not even at you, I hear, just even, you what? You get overwhelmed? You feel like, like...

It's too much noise. It's chalk on a blackboard. It's... You want to fix it. You want to make it go away right away, but you don't know what to do. You freeze. What? I want it to be better. I want it to... I want it to go away might be... Might not be the right word, but...

I don't know what to do about it, but I want there to be a solution. To what? To whatever the strife is, whether it's... Why do you want there to be a solution? Because I feel like I always have to fix it. I always feel like I have to have the, here's, you do step one, two, three, and four, and then we're done. But that's engineering. Yes. That's not relationships. I agree.

So do you know what's the best thing you can do when you say I want to do something? No. Have you asked her? I don't think I've asked you. It depends on the thing. But when it comes to like my friends, like I just want you to be mad too. I just want you to say like, really, really sex and I thought they were better people. Yeah. And it's not fair and give me a hug and then we can move on. Grieve it and let it go. Yeah.

So, if I give you a sequence, would that be helpful? I think so. Right. Step one in the sequence. We're going to take the example of the friends. One is in relation to your friends, one is relation to each other. I'm really upset my girlfriends... Go ahead. I'm really upset that after everything I did for my friends, that they are being so cruel that I can't even wave at them when we drop the kids off at school.

You know what I've done for each of them in the past. And it's so unfair and so hurtful and so petty. I'm really angry. So step one, you just say, "I hear you." Say more. What else? Just bring it on. I hear you. That sucks. You acknowledge. Step one is you acknowledge. Okay. Not what happened, but her feelings, her experience. "Oof, you seem really upset."

What else? What happened? What more? Where are you at with this now? Be curious. Okay. I don't know if I have the language. I hear what you're saying. I...

Wish there was something I could do to make it magically go away. No, no, no You don't have to do squats. I know that's create a space where she can unload And if you know that that is doing plenty You don't have to do more than that Okay, you're not gonna fix her relationships with her girlfriends and maybe she will and maybe she won't at this point She needs a place where she can safely vent. Yeah, I

That is doing plenty. You create the frame and you hold it. I don't get more angry when you commiserate with me. I get less angry because what happens is like I feel so attacked and made into the bad guy. And it feels so unfair to me that I'm just reacting to like, I'm not the bad guy. Like, why can't I say hi to you at school?

Doesn't make me more mad. It just makes me go, thank you. Yes, they suck. That was mean. But then I can let it go. Like, it doesn't build up and get more and more mad. It just is like, okay, it's right. That does suck. And you are my friend. Yes. You're on my side. You're with me. Yeah. I'm not alone. No. Yeah. Yeah. You're not alone. No matter what. I know I don't say it. Sometimes I don't know how to say it. But...

You were never alone. And then, on occasion, you bring her a glove. A glove? Yes. Why a glove? Because you just said it feels good to hit. Okay. We do have gloves in the basement. Yes. And you bring her downstairs and you say, you need to get some steam out. And then you get to work on your illness. She gets to practice and unload. And you go for five minutes downstairs. You bang away and off you go. It is fun to hit something.

So show her that will also make the boxing not just be a medical thing. Deal. And on occasion, if need be, just say to him, I need a glove. Okay. And that becomes the code word that says, I'm really pissed and I need to feel that there is room here for me to be mad on occasion and not be afraid that you're going to shrivel up. So if you would have a glove, you don't shrivel.

I think that's really wise. I understand. Now do the same. The steps is first you acknowledge and then you may need to validate and just say, if this was done to me, I'd be pissed too. Or if this was done to me, I would be really upset. You just validate it. It makes sense that you're pissed.

After the validation, you can empathize and then, you know, me too if the shoe was on the other side. I'd be feeling like that myself. It's very lonely. It's like this is a raw deal. And then the next one is, honey, I'm here. There's not much to say and that's why the hug speaks volumes. Come here. Is that doable? Yes. That would mean a lot to me. And now we need to do the same thing

around the compulsion and spending the savings in response to the side effects of the medication. But the compulsion to porn, did that begin just now or that's been there before? That's been there before. All right. So then those are not one and the same. Right. Right? And I understand that compulsion is related to the medicine. But that's not all of it.

And he didn't come to me or a doctor or the people in our community we'd set up to say, if you can't talk to me, talk to this friend. If you can't talk to this friend, call the doctor. He can email this doctor at any time over side effects from the medication. And we had set that deal up because I didn't want to be your mom.

I feel like this is the ultimate, like, sex killer in our relationship as is that I am in such mom freaking mode all the time. We have three young kids who don't sleep through the night. And I wipe butts and I check on feelings and I sort out disputes. And when I feel like I am also caretaking this, then I don't want to have sex with it. Like, I...

That is a really hard hat to shift for me. And so... For most women, by the way. Okay, that feels good. But do you know that? Do you know that? I don't think I do. When you initiate sex...

And I'm like unable to just like get in that frame of mind. It's because I am in mom mode and mom mode is like the furthest thing from sexy mode ever. Like it's just like such a hard transition. I have to come out of mom mode to enjoy sex. Otherwise, I just... And what helps you do that? What are the things that... The biggest thing is when I feel like you are taking care of yourself

and coming to me from a position of strength, then I don't feel like I'm your care partner. Then I feel like I can get in touch with, "Oh, right, like I'm a woman with a partner." That feels so different to me, but that mental shift is really hard to make sometimes. She's shedding a light on one of the very important aspects of female desire. In mom mode,

She needs to be selfless. She needs to be responsible to attend to the needs of others. She is in the burden of caretaking. If he comes to her with confidence, that's what she means about strength, the biggest turn on, confidence. Then it means that he's not coming to her saying, I need you, but he's coming to her and saying, I want you. If he needs her, then she's more of mom.

She's once again in caretaking mode. If he wants her, then she can focus on herself. She can attend to her own desire. She can be self-centered rather than selfless. We are in the midst of our session and there is still so much to talk about. We need to take a brief break. So stay with us.

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And so now when I don't want to be your babysitter or your mom or give you discipline like I had to do with the kids, I still have this haunting over me that like, oh, but where did our savings go? And I still don't really know where that money went. And I don't think you've told me everything. And that feeling of insecurity, I don't really know all of theirs to know. I don't really know all of you.

And maybe I better be taking care of you and looking up on you and checking in on you. Makes you feel like a naughty teenager, which is super unsexy. So this is the part where if you can come back at me, we can have a conversation. But if you don't come back at me, I feel like I've just shut you down. So as far as the money goes, I have told you everything. So you really spent it on games and not on porn? Nope, I did not spend it on porn.

I spend it on in-app purchases on video games. No. Not at all. I know it seems like a lot to spend on video games. It's stupid, but it's the truth. And your porn use is? Getting better. Not all the way gone. You get different with me when you're watching more porn. I can sense it.

But I can't always put my finger on it. And then you get way more like, grabby, like, and I'm like, oh, gross. Like, can you touch my arm first? Like, we like have a connection or like a breath together or look in my eyes. I feel things slowly changing in our dynamic. And then I suspect that you're watching more porn. But because you're so ashamed to talk to me about the details, what I worry about is, are you watching it at work?

Are you watching it when I'm letting you rest and I'm running on empty? Like, to me, there's a big difference between the kids are in bed and I want to go masturbate or whatever. And like, you know, are you coming home late because you're watching porn? I don't know. It's always in the times where kids are asleep. You're asleep. I feel like I'm definitely not as in tune with you.

when I'm watching more porn. I can definitely feel it. It's one of the things I don't like. You know, in porn you never get rejected. There's never somebody who says, "Don't come." In both sense of the word for that matter. But you don't get rejected. In porn you don't have to ask yourself if you're being competent or adequate. You don't have to measure yourself up one bit.

And in porn you don't have to wonder if she's enjoying it or not because she'll pretend that she's having the best time. It takes care of three very important male vulnerabilities. So it's not for its own because I enjoy on occasion watching porn. It becomes the go-to for a lot of things. Okay means what? Okay means I hear what you're saying and now I'm trying to fix it. It means that I'm...

Trying to think of when we leave here. Mm-hmm. What am I gonna do with that? Maybe the thing is just like knowing that that's the thing and Acknowledging that and just saying I'm worried. Yeah, I'm anxious. Yeah, I'm lonely. I'm restless I'm turned on I want to be turned on I feel and then fill in the blank. Yeah, I

And then make a list of 10 other things that you can do as well. Do you like to build things? Do you like to fix things? Yes. Do you like to fix mechanical things? 5 o'clock in the morning, some people build beautiful things. I think she's onto something here. Yeah? I think one of the reasons why I drive so much in our relationship is because sometimes you think

you don't have a hobby and you feel a little lost and maybe this is a great chance for you to try and figure out what it is that brings you joy because we can't control how you feel physically but i think the more you could find stuff that you just really do enjoy they can feel alive even if you're feeling really tired and crappy

We could have continued focusing on the porn. We had just begun. But knowing that we were nearing the end of the session, I made a different choice. He's been the protagonist of the relationship for the last three years. And the last thing we needed was Hurt continuing to help him figuring himself out with now me joining her so that it's two women helping him to figure himself out.

I thought in this moment that she needed the space. And so we changed direction. We were looking so forward to this year because the little one was going to get bigger enough. You know, it's easier to go out and get babysitters. Everything gets easier once they're out of diapers and closer to sleeping through the night.

And we thought, oh, we're going to do all these things again. Now the energy is not there. So we have to also figure out how do we rebalance? And then every time it feels like we rebalance, then the disease progresses. And so then you have to rebalance again. We're in this constant trying to get our feet under us. And that leads to this horrible cycle of

survival, survival, survival rather than living. And I don't want my kids to grow up like that. You know, I want them to enjoy things and... Are you able to enjoy it with them? Some days. He's trying, but it's like bringing this brain cloud along. Right. But there's a difference between energy and attitude. At this point, it's still early. First, there is the shock. There is the, what does this mean?

There is the how fast it is progressing. There is the I'm going to 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 what it is.

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. Very healthy people, physically healthy people, with a terrible attitude. And they are very sick people with an amazing attitude. They radiate

Right now, you have a bit of a story. I am the guy who doesn't talk. I am the guy who needs to fix things, but then I am the guy who doesn't have a big repertoire of how you fix things. And it's a little narrow and it's a little rigid, and I don't see it being that true. I think once one gives you and says, do this, even if you mimic me,

Because the way we learn, like your children, is first you imitate, then you identify, and then you internalize. So at first you mimic me. I say do it, and then you do it. And then at some point I say do it your way. Do it with your own words. And then after a while you just do something that is not at all what I suggested, but it has the same effect. I hate the whole care partner business, but if this does keep progressing as fast as it has...

Things are going to change for us. What do you say to young couples who, you know, we're not old. We said in sickness and health and we meant it. We just thought we'd be a lot older. I don't have anything revolutionary to say. I think on many levels you probably know so much more than me already about this.

But the attitude is one in which you continue to do two things. You continue to create experiences that bring joy and pleasure and fun, even if they are small things. Beauty, music. You try as hard as you can to separate when you're the woman and when you're the wife and when you're the caregiver and you too. At some point, you may need a caregiver.

You're going to create other sources of support that are creative. You're going to continue to educate yourself and you're going to look at what are some of the things that other people, there are young people. You just have to find them. And what have they done? You can't just go by the doctors. You have to go by the people who have experienced it and have tried things. That doesn't mean that's the right thing for you, but it gives you ideas. And you're going to start to create a network.

of people that you've never met that live in various parts of the world, you're going to use all your nice little tech skills for something else than to load on porn. In moments like these, I too have to confront my own helplessness. There is nothing I can do towards the progressive ravaging effects of his Parkinson's. But I always think about the book Man's Search for Meaning by Viktor Frankl.

which he wrote about his experience in the Nazi concentration camps, when he said that everything can be taken from a man, but one thing, the last of the human freedoms, to choose one's attitude in any given set of circumstances, to choose one's own way. And I want to give this man that freedom, that he can know that he didn't choose his illness, far from, but he can choose how he will live.

Live with his illness.

She also created a game of stories called Where Should We Begin? For details, go to her website, estherperel.com.

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