我该不该离开我垂死的男友

一个无浪区。

an No wake zone.

连一丝风都没有。

Wake Not even catching a breeze.

一天早上我醒来，发现他不在床上，我下楼问他是不是整晚没睡，他说他不知道。

One morning I woke up and he wasn't in bed and I went downstairs and I asked him if he'd been up all night, and he said he didn't know.

我去洗了个澡。

I got in the shower.

我不知道为什么。

I don't know why.

我得赶快冲个澡。

I have to take a shower real quick.

我们为什么要做任何事？

Why do we do anything?

比如我要带我们的儿子去托儿所。

Like I'm going to take our son to daycare.

所以我洗了个澡。

So I took a shower.

我出来了。

I got out.

我当时想，我要送我们的儿子去托儿所。

I'm like, I'm going to take our son to daycare.

等我回来，我们就去急诊室。

And when I come back, we're going to the emergency room.

当我们到达那里并说明了情况后，他们做了CT扫描，发现了一个肿块，情况立即转为紧急。

And when we got there and explained what was going on, they did a CT scan, they found a mass, and it was immediate emergency.

那一刻，信息量太大，但我记得回家的路上感觉，这没什么大不了的。

At that point, this is so much information, but I remember going back home feeling like, This is just it's fine.

他们会照顾好他的。

They're just gonna take care of them.

这需要一点时间，而且我工作中有个人曾经得过脑瘤，是良性的。

It's gonna take a little bit, and somebody at my work had had a brain tumor, and it was benign.

就像，哦，这种事时有发生。

It's just like, Oh, this happens.

没关系的。

It's okay.

当时我婆婆和我在一起，我们就说，先回家吃个午饭吧。

So my mother-in-law was with me at the time, and we're like, let's go home and have lunch.

我们刚到家没几秒钟，他们就打来了电话。

And when we got home, within seconds of being home, they called us.

他们说，你必须立即回来签署文件，要紧急在他头上钻孔，因为肿胀太严重必须立即减压。

They're like, you need to I come had to sign papers immediately for him to have an emergency hole drilled in his head because the swelling was so bad that they had to relieve it.

几天后，他接受了手术。

So a few days later, he had surgery.

他被实施了药物诱导昏迷。

He was put into a medically induced coma.

几天后，他做了手术。

A few days later, he had surgery.

我们的第一次开颅手术。

Our first craniotomy.

然后，耶。

And yay.

那时候才确诊的。

And that's like when the diagnosis came.

是啊。

Yeah.

没错。

Yeah.

所以，我们俩都是胶质母细胞瘤的遗孀。

So, and so both both of us are specifically glioblastoma widows.

我们都清楚这种特定的恶魔，这不是什么好诊断。

We both know that specific beast and it's not a good diagnosis.

自1970年代开始调整治疗方案以来，患者的预期寿命和治疗手段都没有太大变化。

The life expectancy has not really changed nor has the treatment changed much since the 1970s when they started changing it.

这非常残酷。

It's very brutal.

我想和你谈谈这封邮件，有几个原因。

And I wanted to talk to you about this email for a few reasons.

其中一个原因是你确实做到了。

One is that you really did.

我现在要哭了，但你就像我黑暗中的一束光，因为你比我更早成为寡妇。

I'm going to cry now, but you were like that light in the darkness for me because you were a widow first.

你明白我的意思吗？

You know what I mean?

你先经历了这一切，我当时就想，她还在这里。

You did it first and I was like, okay, she's still here.

我也能做到。

I can do this.

总有一天我也要面对这些，但我能看到她做到了。

I will have to do this someday, but I can see her do it.

我会永远记得保罗的葬礼。

I'll always remember Paul's funeral.

我会永远记得你致的悼词。

I'll always remember your eulogy.

没错。

Right.

就像，能撑起那片天花板。

Like, can hold that ceiling up.

并且了解照护的现实情况。

And know the realities of caregiving.

你知道陪伴一个人走到生命终点意味着什么，而你的悲伤轨迹彻底改变了你的人生。

You know what it means to walk someone to the end and your grief trajectory completely changed your life.

现在你有了完全不同的事业，我也想请你跟我们分享一下。

And now you have an entirely different career that I also want you to tell us about.

是啊。

Yeah.

自那以后，大约在保罗去世一年后，我成为了其他脑癌患者特别是护理人员的同伴导师。

So since then, about a year after Paul died, I became a peer mentor for other brain cancer, specifically caregivers.

这是保罗生前非常重视的事情。

It was something that was important to Paul.

我们曾去过一个志愿者网络活动，那里提供免费披萨。

We had gone to a, like volunteer network thing, and they had free pizza.

他当时就说，走吧，免费披萨和脑肿瘤讲座。

And he's like, let's go, free pizza and brain tumors.

好吧，

Okay,

这是脑肿瘤讲座吗？

Get a that's brain tumor?

还能得到一片免费披萨。

Get a free slice of pizza.

对吧？

Right?

那披萨确实很好吃。

It was good pizza too.

美国脑肿瘤协会当时正在开展这类同伴互助项目。

Had been there, the American Brain Tumor Association had started this sort of peer mentorship program.

实际上这个项目是基于我们的关系建立的，因为我在吃披萨时提出过，我们需要能真正理解这种处境的人来交流。

And it was actually based on our relationship because I had brought up in that over pizza that we need people to talk to, that like get it, and can understand.

于是，我成为了一名同伴导师。

So, I became a peer mentor.

我决定重返校园，攻读心理咨询与心理服务硕士学位。

I decided to go back to school and get my master's in counseling and psychological services.

所以我现在在一家企业诊所工作。

So I work now for a corporate clinic.

我是一名预备执照咨询师，正在努力获取明尼苏达州的执业资格。

I'm a pre licensed counselor, so working towards my licensure in the state of Minnesota.

我从事哀伤辅导、创伤治疗，也处理多动症、抑郁、焦虑等问题，这份工作变得无比有意义。

I work with grief, I work with trauma, I work with ADHD, depression, anxiety, all of those things, and it's become incredibly meaningful.

我想，这大概是我在悲剧后的成长吧。

It was my, I guess, like growth after tragedy.

是啊。

Yeah.

是啊。

Yeah.

我觉得这真的很美好。

I think it's really beautiful.

我邀请你来正是出于这些原因，因为你知道，这确实让人感到迷茫。

And I wanted you here for all those reasons because, you know, it's very disorienting.

当你明知某个人的生命注定比你短暂时，与他相处会让人非常无所适从。

It's very disorienting to be with somebody whose life you know for a fact is going to be shorter than yours.

你知道，开始一段关系、婚姻时，没人会想着'我们要携手共度，最好能在睡梦中手牵手同时离世'。

You know, you don't you start a relationship, a marriage, anything thinking like we're going it together and like hopefully we'll die at the same time holding hands in our sleep.

这种情况极少发生。

That very rarely happens.

当你的生活发生改变时，它往往不以你期望的方式出现。

And when your life changes, it is not in the way that you asked it to happen.

而且这种改变从来不会让你觉得完全可控。

And it's never in a way that feels like completely manageable to you.

有人递给你一个婴儿，说要在七月四日从这艘浮筒船边呕吐，也许是因为龙舌兰酒，也许是因为我脑子里有个肿瘤。

Somebody hands you a baby and says, gotta throw up off the side of this pontoon boat on the July 4, and maybe it's the tequila, and maybe it's the fact that I have a brain tumor.

所以，我还有一个问题。

So, I had one more question.

哦，是的。

Oh, yes.

那么作为一名从照顾者转变为寡妇的人，你对这封邮件的第一反应是什么？

So what was your first reaction to this email as a caregiver turned widow?

我的第一反应是愤怒，不是愤怒，是对社会的沮丧，认为照顾他人就意味着要完全牺牲自我并承担一切。

My first reaction was anger, not anger, frustration with society that caregiving somehow means sacrificing your entire self and carrying everything.

这就像我们不是在给予关怀。

It's like we're not giving care.

我们仿佛必须处处倾注关怀。

We're like we have to bleed care everywhere.

这就是我初次阅读那封邮件时的感受。

And that's what I kind of felt from the email when I when I first read it.

是的，我的护理经历可能有些反常，或许我只是深陷其中而无法察觉。

Yeah, I my caregiving experience, I think was it might have been anomalous, you know, but I I, and I might have just been so in it that I couldn't feel it.

就像我无法感知它的巨大，因为实在有太多事情了。

Like I couldn't feel the enormity of it because there was just so much.

所以我的第一反应是，天啊，什么情况？

So I think my first reaction, which was like, oh my God, like, what?

你在说什么？

What are you talking about?

老实说，这就是我的第一反应。

Which was honestly my first reaction.

比如，什么？

Like, what?

如果这是你一生的挚爱，你就会义无反顾去做。

If this is the love of your life, you just do it.

对吧。

Right.

我的反应是针对她停下来审视自己整个人生，意识到这项任务有多艰巨，而我当时要么没时间思考，要么没刻意留出时间思考。

Was my reacting to her taking a pause and looking at the entirety of her life, looking at how big this task is, which I either didn't have the time to do or did not make the time to do.

但我也在照顾一个没有抑郁的人，而我本不必如此。

But I also was giving care to a person who was not depressed and I would not.

艾琳是个开朗、快乐、善良的人。

Erin was a buoyant, happy, good person.

如果我被诊断出脑癌或任何绝症，特蕾西，相信我，我会变得很糟糕。

If I were diagnosed with brain cancer or anything terminal, Tracy, trust me, I would be horrible.

我会让人难以忍受。

I'd be insufferable.

我可不会默默忍受。

I would not suffer quietly.

我不会死得很有尊严。

I wouldn't die with dignity.

这一点我可以明确告诉你。

I'll tell you that much.

就是不会。

Just wouldn't.

我就是做不到。

I just wouldn't.

因此我认为他在这方面让我好过些。

And so I do think he made it easier on me for that reason.

而且脑瘤确实会对人的性格产生各种影响。

And also the fact that brain tumors can do a lot of different things to your personality.

疾病能彻底改变一个人的性格。

Illness can do a lot of things to your personality.

而他没经历这些，意味着我也不必面对。

And he didn't experience that, which meant I didn't experience it.

他一直都是他自己。

He was always himself.

而且，你知道，我认识一些照顾过痴呆症患者或脑瘤患者的人，那些脑瘤影响了他们大脑的某些部分，彻底改变了他们的性格。

And, you know, I've known people who gave care to people who suffered from dementia or whose brain tumors ran a part of their brain that completely altered their personality.

而她正在经历一种我未曾体验过的孤独，因为艾琳一直在我身边，我们真正共同面对这一切。

And I she is experiencing a kind of loneliness that I didn't have to experience because Erin was right there next to me, and we were truly in it together.

嗯。

Mhmm.

人们以不同的方式应对事情。

And people cope with things in different ways.

嗯。

Mhmm.

他的应对策略与她的应对策略不同。

And his coping strategy is different than her coping strategy.

是的。

Yeah.

我也有同样的经历。

I experienced the same thing.

保罗不想和我谈这件事，但他还是主动提出去接受心理治疗。

Paul didn't want to talk to me about it, and he was still willing to like, volunteered to go get therapy.

那时候我甚至都没在做心理治疗。

I wasn't even in therapy at that time.

没有。

No.

我没时间做那个。

I don't have time for that.

不。

No.

我哪有时间去？

When would I go?

他去接受心理治疗，把他的存在性死亡焦虑、恐惧等等都带到了治疗师那里。

He went to therapy and he brought his, like, existential mortality, his fear, and all of that to his therapist.

他并没有——他看起来，再次，像是我们共同面对这一切。

He didn't- he looked, again, like we were in it together.

是的。

Yeah.

而且他不会给我额外压力，要求我帮他解决如何为这件事做情感准备。

And he wasn't going to put extra pressure on me to figure out how he was going to emotionally prepare for this.

没错。

Yeah.

他自己承担起了这份责任。

He took responsibility for that on his own.

所以我完全不需要背负任何情感负担。

And so I didn't have to carry any emotional weight.

而且我认为任何人都不该独自承受全部的情感重担。

And I don't think anybody should have to carry all of the emotional weight.

确实。

Yeah.

所以它会变得沉重。

So it gets heavy.

确实很沉重。

It is heavy.

是的，很沉重。

Yeah, it's heavy.

非常沉重。

It's heavy.

没错。

Yeah.

我觉得这很有意思，因为你提到美国文化中对待护理工作的方式让你愤怒——所有成本都落在护理者身上。

I think it's interesting to me because you mentioned it makes you angry for just the way that caregiving is treated in American culture, which is that the cost lies with the caregiver.

所有成本都落在患者身上。

The cost lies with the patient.

在美国生病根本没有真正的社会安全网，而原本就脆弱的社会安全网现在每天都在变得更加支离破碎。

There is no real social safety net for being sick in America and whatever flimsy social safety net was there is definitely just being frayed more and more each day.

所以这些担忧并非毫无根据。

So these are not baseless concerns.

而且我个人并未经历过这种失去。

And also I did not for myself experience the loss.

我并未将其视为一种失去。

I didn't take it as a loss.

我自己也没有感受到这是一种失去。

I didn't feel it as a loss myself.

让我震惊的是，她两次提到选择只在自私与无私之间。

And what struck me in this is that twice she says that the choice is between selfishness or selflessness.

但我并没有那种感觉。

And I didn't feel that.

我不认为这是个非此即彼的选择。

Don't know that that's a true binary.

我认为不该期望一个人燃烧自己来温暖他人。

I don't think that the expectation should be that you light yourself on fire to keep somebody else warm.

那也不是我的现实情况。

And that wasn't my reality either.

尽管确实很多，你知道吗？

Even though it was a lot, you know?

对。

Right.

对。

Right.

你提到了一个关于无私或自私的辩证关系。

And I you brought up a a a dialectic of selflessness or selfishness.

而这之间还有很多可能性。

And it's there's so much in between.

有爱。

There's love.

还有同情。

There's compassion.

彼此间有着同理心。

There's empathy for each other.

有着共同的悲痛。

There's shared grief.

有着共同的悲伤。

There's shared sad.

就像，这不是非此即彼的。

Like, there's- it's not one or the other.

是的。

Yeah.

我们必须同时兼顾两件事。

And we have to kind of hold two things at the same time.

同时处理多件事情。

Multiple things at the same time.

如果你能同时兼顾两件事，那真是太幸运了。

You're so lucky if you're holding two things at the same time.

我有两只手。

I had two hands.

我能应付得来。

I can manage it.

有什么了不起的。

Big deal.

我们就这样下车吗？

Would this how we get out of the car?

这是，这是一个，这是真实的写照

This is, this is a, this is actual representation

的——好吧。

of- Okay.

那就是我每天去上班的样子。

That's me going into work every day.

是啊。

Yeah.

每一天。

Every day.

是啊。

Yeah.

要知道我们一次可以拿不止一样东西。

Know we can carry more than one thing at once.

而这条信息，对我来说，尝起来像是孤独与隔绝的滋味。

And the message, to me, tasted like loneliness and isolation.

再次强调，我们讨论的是这类极端情况。

Again, we're talking about these sort of extremes.

非此即彼，但让我猛然警醒或最初深有感触的是那种为某人将生活搁置的理念。

It's one thing or the other, but something that jumped out on me or jumped out at me and initially felt very to me was the idea of putting your life on hold for somebody.

那种当你照顾所爱之人——你认为是你一生挚爱时，你把自己的生活搁置起来的观念。

The idea that you are putting your life on hold when you are taking care of somebody that you love and that you think is like, you know, like the love of your life.

就我个人而言，我并不认为那算是生活的搁置。

Like, I I don't personally consider that my life being on hold.

我认为，这是我如今生活中最具意义的部分之一，位列前五、前三甚至前两位。

That is, I think, top five, top three, top two most meaningful parts of my life today.

是啊。

Yeah.

我记得和你聊过，关于一系列瞬间的话题。

I remember talking with you about, like, a series of moments.

生活就是由一连串瞬间组成的。

Life is a series of moments.

我们把这句话放进保罗的纪念册里，因为你帮我校对过。

And we put this in Paul's program because you proofread it for me.

我当时就想，她的文字功底真好。

I was like, she's so good with words.

诺拉，帮我写悼词和我丈夫纪念册里的文字吧，就是那些我必须完成的程序性内容。

Nora, help me with my my eulogy and my husband's, like, by the program thing that I have to write.

这实在太多了。

It was too much.

人生是由一系列时刻组成的，而这是一个重要的时刻，但并非唯一。

It's a series of moments, and and this is a big one, but it's not the only one.

是的。

Yeah.

是的。

Yeah.

当你的伴侣被诊断为绝症，而你选择陪伴在侧时，某种程度上你是在选择暂时放弃自己人生的主导权。

There's something when you get a terminal, when your partner gets a terminal diagnosis and you're making the choice to walk alongside them, you're kind of like making a choice to get out of the driver's seat of your own life for a little while.

就像，你不再掌控一切了。

Like, you are not in control anymore.

现在掌控一切的是疾病。

The illness is now in control.

面对这种情况，你会怎么做？

And what do you do with that?

面对这种失控，你会如何应对？

What do you do with that lack of control?

是啊，你这么说真有意思，因为亚伦确诊后，我们就像把这件事塞进后备箱还上了锁，除了他需要化疗、放疗或癫痫发作的时候，我都觉得，抱歉，我们只是普通人。

Yeah, that's so interesting that you said that because Aaron got this diagnosis and we kind of like put it in the trunk and locked the trunk, you know, like aside from the times where he had to take chemo, had to go to radiation, or he was having a seizure, I was like, sorry, we're just regular people.

就像你读我博客时的反应——天哪，受不了这个。

The way that you read my blog and you're like, oh God, can't do this.

对吧。

Right.

我不认为这是个好决定，但我们没参加任何互助小组。

And I don't think this was a good choice that we made, but we didn't go to any support groups.

没错。

Right.

这类活动我们都没去，因为觉得不不不。

We didn't go to any of that kind of stuff because we're like, no, no, no.

我们只想做自己，癌症要来就来吧。

Want to just be us and cancer can come along.

但我们不能变成'癌症患者'，因为我们本就不是那种人。

But we can't be cancer people because we're not cancer people.

对。

Right.

我们几乎是在为生活的常态而辩护。

We were so almost defensive over the normalcy of our lives.

我不知道那是否纯粹是错觉，但几乎就像你说的那样。

And I don't know if that was pure delusion, but it's almost like you are correct.

你无法掌控。

You're not in control.

没错。

Right.

我曾以为自己是掌控者。

I believed that I was in the driver's seat.

就像，我相信我们能控制可控之事。

Like, I believed we could kind of control what we could control.

比如，哦，我们还是要结婚的。

Like, oh, we're still going to get married.

我们还是要生个孩子。

We're still going to have a baby.

我们还是要度蜜月。

We're still going to go on a honeymoon.

我们还是要花钱看演出、买耐克鞋之类的东西。

We're still going to spend our money going to shows and buying Nikes and things like that.

但那是因为，从大局来看，我们头顶上有个巨大的时钟在倒计时，而我们不知道炸弹何时会真正爆炸。

But that's because, like big picture, like there is a giant clock above us ticking down and we don't know when the bomb is actually going to go off.

而且不知道。

And don't know.

说实话，特雷西，这对我来说很难，因为我从未、从未想过其他事情，除了‘好吧，下一步是什么？’

Honestly, Tracy, here's why this was hard for me, because I never ever, ever thought about anything except like, okay, what's next?

我们接下来要做什么？

What do we do next?

所以我从没想过。

And so I never thought.

我从未想过会有退出的可能。

I never thought there was an exit ramp ever.

这根本不在我的考虑范围内。

It just didn't cross my mind.

我能理解写这封信的女性，因为我知道她害怕的是自己是个坏人。

And I feel for the woman writing this because I know what she's afraid of is that she's a bad person.

但我不认为她是个坏人。

And I don't think she's a bad person.

我认为她只是对可怕的事情产生了合理的恐惧。

I think she's being appropriately afraid of a scary thing.

而且我认为她是个了解自己需求的女性，她已经在为那个她以为自己会拥有的人生而哀悼了。

And I think she's a woman that's in touch with her needs, and she's a woman who's already grieving the life that she thought she would have.

所以

So

一切始于七月。

start everything started in July.

我们之前已经谈过这个话题了。

We had had the conversation.

我们的儿子两岁半左右时，我们讨论过组建家庭和搬离北明尼阿波利斯去郊区的事，你知道的，为了孩子的教育和家庭发展。

Our son was two and a half about building our family and moving out of North Minneapolis to the suburbs, you know, for schooling for our kids and building our family.

后来我们去梅奥诊所找了一位神经肿瘤学专家进行二次诊疗，我向他咨询了冷冻精子的事，因为我一直惦记着这件事。

And we went to get a second opinion with a neuro oncologist at Mayo, and I asked him about freezing sperm because this was on my mind.

对吧？

Right?

就像，我们本该...我本不该出现在这里。

Like, we're supposed like, I'm not supposed to be here.

我本该是在备孕的。

I'm supposed to be getting pregnant.

是啊。

Yeah.

然后这位医生看着我说：嗯，这要看情况。

So, and this man looked at me and doctor looked at me and said, well, it depends.

你想当两个孩子的单亲妈妈还是一个孩子的？

Do you want to be a single mom to two kids or one?

那是最诚实的回答。

And that was the most honest answer.

我当时很生气。

I was mad.

不，你应该帮我保持希望。

Like, no, like help me keep hope.

让我继续活在幻想中，以为我能过上计划中的生活。

Like, let me continue to live the delusion that I'm going to live the life that I had planned.

然后呢？

And in what?

就像，很快地。

Like, real quick.

是的，不，你将会成为单亲妈妈。

Yeah, no, you're going to be a single mom.

你终将成为一位单亲妈妈。

You already are going to be a single mom.

你可以选择抚养一个或两个孩子。

You can have one or you can have two.

我当时想，我不想成为两个孩子的单亲妈妈。

I was like, I don't want to be a single mom to two kids.

但这却成了我的现实。

That became my reality.

是啊。

Yeah.

所以

So

当我们选择成为照顾者时，必须学会放手——放弃我们原以为拥有的掌控权或未来。

we have to let go of we we let go of what when we make a choice to be a caregiver, we let go of the control or the future that we thought we had.

并给自己空间去哀悼这种失去。

And we give ourselves space to grieve that.

是的。

Yeah.

她说她不想再经历悲痛了，因为她父亲两年前去世，她刚刚走出来。

She said she doesn't want to grieve again because her dad died two years ago and she just got through it.

就像，这就是悲痛。

And it's like, this is grief.

你现在正在经历它。

You're experiencing it now.

我记得有人在我亚伦生病时对我说过类似的话，我当时反应是：不，你错了，永远别再对我说这种话。

And I remember someone saying that to me when Aaron was sick and I was like, no, you're wrong and never say that to me again.

我感到非常被冒犯。

I was so offended.

真的非常生气。

I really was.

我当时就说，别那么说。

I was like, don't say that.

不，我没有。

No, I'm not.

不，我没有，因为他现在就在这里，你知道吗？

No, I'm not because he's here right now, you know?

所以不，我没有在哀悼。

So no, I'm not grieving.

但我当然是在哀悼。

But of course I was.

我们并未得到我们以为会拥有的那种人生。

And we did not get the version of life that we thought we would.

而且我本来就不确定这一切是否曾在我们掌控之中。

And I don't know that it was ever in our control anyways.

你知道吗，我喜欢问——谁又能说得准呢？

You know, I like who's who's to say?

就像，如果没有这个晚期诊断，又会发生什么呢？

Like, what would have happened without, you know, this this terminal diagnosis?

但你知道吗，生活中从来就没有任何保证或掌控可言，从来都没有。

But like there's just no guarantees and no control in life ever, you know, like ever.

即使她选择和这个人在一起，即使她嫁给了他，没有那个诊断结果。

Like even if she stays with this guy, even if she had married this guy, was no diagnosis.

你无法保证能在想要的时候得到想要的东西。

There is no guarantee that you will have the thing that you want when you want it.

而这与明知自己得不到之间是有区别的。

And there's a difference between that and knowing you're not going to get it.

就像只是知道，只是知道自己并非如此。

Like just knowing, just knowing you're not.

她提到自己毫无希望，而她正是靠着希望支撑的。

And she mentioned she has no hope and that she runs on hope.

我

I

我想听听你对这件事的看法。

I want to hear your take on that.

我想听你谈谈，当我们对曾经期待的生活失去希望时，我们该怎么办？

I want to hear you talk about what do we do when we don't have hope for the life that we thought we would have?

是什么支撑我们继续前行？

What keeps us going?

对我来说，就像是，好吧，我们既然在这里。

For me, it was just like, okay, well, we're here.

那就去做吧。

Let's do it.

她的主要问题是我该怎么办？

Her main question is what do I do?

对。

Right.

而且我们不告诉任何人——没人会告诉你

And we don't tell anybody- nobody doesn't tell

该怎么做。

you what to do.

我不知道你该怎么做，对吧？

I don't know what you do, right?

但我害怕因为生育年龄而将生活搁置。

But it's like scared about putting my life on hold for my childbearing years.

这就是我想要的。

This is what I want.

我想和他一起实现。

I want it with him.

他是我一生的挚爱。

He's the love of my life.

但我真的想这样做吗？

But do I want to do this?

对我来说，根本问题是：我是个坏人吗？

Like to me, the underlying question is, am I a bad person?

而对我来说最终的问题是：但我没有帮手。

And the final question to me is, but I don't have help.

比如什么？

Like what?

如果没人帮忙，我该如何度过这个难关？

How do I get through this if I don't have help?

所以我认为，我们每天都能找到希望。

So we find, I think, we find hope in every day.

我想我始终抱着希望，也许这很天真。

I think I held on to hope, and maybe it was naivete.

好吧。

Fine.

好吧。

Fine.

好吧。

Fine.

这就是我的思维方式。

And that's just how my brain operates.

比如，哦，事情发生前我不会去担心它。

Like, oh, I'm not going to worry about it until it happens.

我觉得保罗和我都是这样行事的。

And I think that's how Paul and I both operated.

虽然确实会有焦虑涌现，但大部分时候，在化疗间歇期以及我们面对的所有事情之间，我们就这样过来了。

And it made for I mean, there was anxiety that bubbled up, but for the most part, in between chemo and in between all of the things that we were dealing with, we just were.

是的。

Yeah.

我不知道还能怎样，希望正是由此而生。

I don't know how else to and that's where the hope came from.

那是我们家庭中每天感恩的微小时刻，对每一分钟都心怀感激。

It was it was, like, little moments of gratitude in our family every day and and grateful for the minute.

当然，也有痛苦，比如我坐在餐桌对面，看着空荡荡的椅子，因为他病得太重无法来吃饭，而我的孩子还坐在高脚椅上。

Of course, there was pain and there were, like, moments I was sitting across from the dining in the dining room table and sitting across and looking at an empty chair because he was too sick to come to dinner and my kid child is in the height chair.

而我感激他就在楼上

And I was grateful that he was upstairs

嗯

Mhmm.

在睡觉

And sleeping.

是啊

Yeah.

希望不会随着人一起消逝

It's hope doesn't hope doesn't die with the person.

我希望

I hope.

对我来说希望是种很奇妙的东西

Like hope is such a strange thing to me.

不知道

Don't know.

就像我真的不太明白

It's like I don't really know.

我想我可能无法确定，比如，你什么时候会失去希望？

I guess I couldn't have identified, like, when do you lose it?

你什么时候拥有它？

When do you have it?

就像，你知道的，它对我来说感觉有点难以捉摸，因为它某种程度上是对一个永远超出我们掌控的未来的执着。

Like, you know, it's it feels like a little bit slippery to me because it's sort of a fixation on a future that is always out of our control in a way.

然而我确实认为我也曾陷入同样的错觉中，想着，好吧，统计数据说是三到五年，但总有例外情况。

And yet I do think that I operated in that same kind of delusion to where, Okay, well, the statistics say three to five years, but there's outliers all the time.

直到脑癌挣脱我们捆住它的束缚，让他癫痫发作，或者他不得不去抽血检查之类的。

So until brain cancer kicks its way out of the trunk where we have hog tied it and he has a seizure or he has to go get his blood drawn or something else.

它就是不在了。

It's just not there.

我不知道那样是否健康。

And I don't know if that was healthy.

我不知道那种程度的心理隔离是否好，但它确实不仅让事情变得可以忍受，还让我拥有过很多快乐。

I don't know if that amount of compartmentalization was good, but it definitely made things not just bearable, but did have I had a lot of joy.

我想我之前向你描述过那些年，特蕾西，那可能是我生命中最快乐的时光，因为我为每一件不那么糟糕的小事而心怀感激，因为我们彼此都如此活在当下。

I think that I've described those years before, Tracy, as probably the happiest of my life because I was so grateful for every small thing that wasn't horrible and because we were so present with each other.

即使我们情人节那天是在医院里度过。

Like even if where we were was the hospital on Valentine's Day.

感觉就像一切都变得更加浓烈。

Like it just felt like everything was heightened.

我为这位作者感到难过，因为我觉得她并没有体会到那种感受。

And I'm sad for this writer because I don't think that is is she's not feeling that.

而且

And

我

I

根据我的经验，危机能让人头脑清醒。

guess crisis clarifies in my experience.

所以有时候我会觉得，天啊，我完全清楚自己要做什么。

And so either like I have felt like, oh God, I know exactly what I'm going to do.

或者我感到不知所措。

Or I felt like I don't know what to do.

所以我会坐在这里直到想明白。

So I'll sit here until I figure it out.

但就像，我只是...我不确定自己是否有过那种感受，但在和艾琳相处的那段日子里，我确实没有这种感觉。

But like, I just, I I've, I don't know that I've felt, but in like the, in the, in the, you know, in the situation that I was in with Erin, I did not feel, I didn't feel this.

我没有这种感觉。

I didn't feel this.

我也一样没有。

And I didn't either.

我在思考一个叫做'环形理论'的概念，它很沉重，是的，当事人处于中心，配偶在下一个外圈，然后是子女，我们不断向外延伸，原则是'安慰向内，宣泄向外'。

There's a concept I was thinking about called ring theory, and it's heavy, yeah, the person is in the middle, and then the spouse is on the next outer circle, spouse, children, and then we keep going outer and outer, and it's comfort comes in and dump out.

就是这样。

That's what it is.

安慰向内，宣泄向外。

Comfort in, dump out.

嗯。

Yeah.

是的。

Yes.

所以你得想办法在这种照顾他人的角色中为自己找到那种支持。

And so you figure out how to kind of obtain that for yourself when you're in this caregiving role.

比如，我该去哪里寻求帮助？

Like, where do I go?

在我看来，这位女士或许能从写作中受益。

And it appears to me that this woman could benefit from writing.

是啊。

Yeah.

写作确实是——这个月我强烈推荐这个方式，特蕾西。

Writing and is is This my month, that was my big recommendation, Tracy.

这就是我们总结出的关键——你必须得有个可以依靠的人。

This is like where we bring it on home is like, you gotta have somebody.

你必须有一个理解你的人。

You gotta have somebody who gets it.

你必须有一个懂你的人。

You gotta have somebody who gets it.

这个人不一定要是你从小一起长大的挚友，而他们的伴侣不会在三年内离世。

And it doesn't have to be, you know, the best friend that you had from growing up whose partner is not gonna die in three years.

也不一定是你的同事，而他们的丈夫没有脑瘤。

It doesn't have to be, your coworker whose husband doesn't have a brain tumor.

可以是一个朋友的朋友，她发邮件给你是因为听说你们经历着同样的事情，你们可以一起吃早餐，然后互发短信，可以打电话倾诉，哭诉，说出任何你需要说出的疯狂话语。

It could be a friend of a friend who emails you because she heard that you're going through the same thing and you go have breakfast and then you text each other and you can call each other and cry and say whatever crazy thing that you need to say.

但你真的需要有这么一个人。

But like you do have to have somebody.

你必须要有这么一个人。

You got to have somebody.

一个可以倾泻情绪的地方。

A place to dump out.

一个可以倾吐的地方。

A place to dump out.

真的很恶心。

Really gross.

抱歉。

Sorry.

我知道。

I know.

得加上这个，就像个生动的预言。

Got to put that there's like a graphic fortune.

上面就是这么写的。

That's what it says.

上面写着类似'在倾吐中寻求安慰'的话。

It says like comfort in dump out.

你知道吗？

And you know what?

这是真的，因为有多少次人们当着你的面来向保罗倒苦水？

It's true because how many times do people come and try to dump on Paul in front of you?

你会说，不，这不行。

You're like, no, it's not happening.

你不能那样做。

You can't do that.

你不能那样做。

You can't do that.

我们有种本能反应，就是你不能这么做。

We have this instinctual, you can't do it.

但自私与无私之间就是有种微妙区别。

But there's just something about that selfishness versus selflessness.

她一直在问，我该离开吗？

She keeps saying, do I leave?

我该留下吗？

Do I stay?

我要为这个人放弃所有的生育年龄，暂停我的人生吗？

Do I give up all my childbearing years for this person and pause my life?

我甚至产生这种念头，是不是很邪恶？

Am I the devil for even thinking this?

这感觉就像一场全押或全弃的赌局，我也能理解，因为风险实在太高了。

And it just feels like a lot of all or nothing, which I also understand because the stakes are so high.

风险实在太高了。

The stakes are so high.

我不知道。

I don't know.

特蕾西，对我来说，爱一个人...

I also feel, Tracy, to me to love somebody.

现在我要哭了...爱一个人是种荣耀。

And now I'm going to cry to love somebody as an honor.

同时也是种责任。

It's also a responsibility.

我们确实对我们所爱之人负有责任。

We do have a responsibility to the people that we love.

如果我说，比如你是我一生的挚爱，我不知道此生还能做什么，唯有爱你至你生命尽头。

And if say if I tell somebody like you are the love of my life, I don't know what else I would do with my life, but love you till the end of yours.

说实话，我觉得这正是我难以理解这部分内容的原因。

I think honestly, that's where I had a hard time reading this.

如果我是那个只剩三年寿命的人，我想我最大的恐惧会是——我不值得别人用三年生命来陪伴。

If I were the person who had three years to live, I think my greatest fear would be like, I'm not worth that three years of someone's life.

我并非说这个代价不高，但对我而言，知道这点会很难承受。

I'm not saying that's not a high price to pay, but that would be hard thing for me to know.

是啊。

Yeah.

这需要同时接纳两种事实。

It's holding two truths at the same time.

是的。

Yeah.

我爱这个人。

I love this person.

我想陪伴他们走到最后。

I want to walk them through to the end.

这意味着我的生活正在改变。

And that means my life is changing.

嗯。

Yeah.

嗯。

Yeah.

关于孩子的事。

The baby thing.

我-我们还没跟医生谈过孩子的事。

I- we didn't talk to a doctor about the baby.

我本来打算去谈的。

I was going to do it.

你知道，我觉得这不被推荐。

You know, I don't think it's recommended.

我认为这不被推荐。

I don't think it's recommended.

我理解为什么。

And I understand why.

对吧？

Right?

比如生孩子是件大事。

Like having a baby is a huge thing.

这确实是件大事。

It's a huge thing.

这确实是件大事。

It's a huge thing.

噢，别再添一个孩子了。

Oh, don't add another baby.

你就是不该再给自己添一件需要操心的事。

You just don't add another thing that you have to care about.

我做到了。

I did it.

我做到了，而且我尝试了两次。

I did it and I tried to do it twice.

我知道。

I know.

就像，我也不知道。

Like, and I don't know.

我不知道那是什么。

I don't know what that is.

我当时就想，不管是什么，我都能搞定。

I just was like, whatever it is, I can do it.

不管是什么，我都能搞定。

Whatever it is, I can do it.

我不知道自己能否做到。

I don't know if could have done it.

在我看来，你们必须互相沟通。

To me, I'm like, you guys have to talk to each other.

你们必须进行对话。

You guys have to have a conversation.

不能没有交流。

Can't have a conversation.

你们必须展开对话。

You have to have a conversation.

我要陪你去医院吗？

Am I going to the doctor with you?

如果你们没结婚，当他的家人到场且不希望你留在房间时，你就无权待在那里。

If you're not married, don't have a right to be in the room if his family shows up and they don't want you there.

这些对话是必须要有的。

You have to have these conversations.

你必须能够进行那些令人不适的对话。

You have to be able to have uncomfortable conversations.

如果你想称某人为一生挚爱，你最好能做到这一点。

And if you want to call somebody the love of your life, you better be able.

这对任何人都适用，不仅仅是这位来电者。

This goes for anybody, not just this caller.

对吧？

Right?

如果你想称某人为一生挚爱，你必须能和他们进行任何可能的对话。

If you want to call somebody the love of your life, you have to be able to have every conversation under the sun with them.

你必须能够说出所有难以启齿的话。

You have to be able to say all the hard things.

这不是那种你可以随便应付过去的事情，因为其中还涉及医疗和法律上的漏洞或问题，你会...

This is not just something that you can kind of wing your way through because there are also medical and legal loophole or medical and legal issues that you will

是的。

have Yes.

致

To

你必须进行这些对话，但这并不意味着你必须成为他所有情感的接收器，或者由你来承担这一切。

you have to have those conversations and doesn't mean that you have to be the receptacle for all of his feelings or that you're the person to do that.

但你得知道，计划是什么？

But you got to know, what's the plan?

已经过去几个月了。

And it's been a few months.

你必须有个计划。

You have to have a plan.

你必须知道计划是什么。

You have to know what the plan is.

如果你要去医生那里就诊，医生那边发生了什么？

If you're going to the doctor's appointment, what happened at the doctor's appointment?

如果他再也无法说话，会发生什么？

What happens if he can no longer speak?

如果他以其他严重方式丧失行为能力会怎样？

What happens if he's incapacitated in another serious way?

你要么现在进行这些对话，要么永远没有机会，而后者情况会更糟。

You either have these conversations now or you have them never, and it will be worse to not have them.

你是怎么和保罗进行那些对话的？

How'd you have those conversations with Paul?

他只是比较配合，你还记得吗？

He was just amenable to like, did you, do you remember?

我只记得看着亚伦，因为猜怎么着？

I just remember looking at Aaron because guess what?

另一位曾经历过脑瘤的人告诉我，现在立刻去找律师。

Another brain tumor person who walked that road before me said, go to a lawyer right now.

现在立刻去找律师，立遗嘱，制定医疗指示，取得医疗授权委托书。

Go to a lawyer right now, make a will, make a healthcare directive, get medical power of attorney.

而我们为彼此做了这些。

And we did it for each other.

我当时想，我也要为自己这么做。

I was like, I'll do it for me too.

你可以作为我的备选人以防万一。

You can be mine just in case.

现场有第三个人帮忙分担了很多压力。

A third person there took a lot of the heat off of it.

这里有位律师在场。

There's a lawyer here.

她，她会问我们所有这些问题，我们将在受控环境中回答。

She's, and she's going to ask us all these questions and we're going have them in a controlled environment.

确实，我可能会哭一下，但最终我们还是完成了。

And yeah, I'm going to cry a little bit, but also like at the end we did it.

好的。

Okay.

这大概花了一小时，现在我们已处理好这些事，不必再担心这些具体问题了。

It was maybe an hour of our lives and now we have tied things up and we don't have to worry about those specific things.

会有新的事情发生，对吧？

Something new will happen, right?

但我可以说，是的，我有这份法律文件，这很重要。

But I can be like, yes, I have this legal piece of paper and that matters.

这些事情确实很重要。

Like those things do matter.

我们在保罗第二次手术前一晚做了很多这样的准备。

We did many of those things the night before Paul's second surgery.

比如，打电话叫邻居过来当见证人，因为在那之前我们完全没考虑过这件事。

Like, called our neighbors and asked them to come over and be witnesses while we were filling it out Because we hadn't thought about it until that point.

直到肿瘤复发，这一切才显得真实。

Like, it wasn't real until the tumor came back.

是啊。

Yeah.

我们原以为一直在积极对抗病魔。

It was like, we thought we were actively fighting it.

我们坚持了整整一年。

And we were for an entire year.

是啊。

Yeah.

然后咚咚敲门，我又回来了。

And then knock, knock, I back.

是我，那个肿瘤。

It's me, the tumor.

然后我们就想，哦，我们得把这些事情搞定。

And then we were like, oh, we got to figure these.

而且我们那时也更年轻。

And we were younger too.

我当时，这是十一二年前的事了。

I was, and this was eleven years ago.

我们当时就是不知道。

We just didn't know.

没人会为这种事提前教你。

Nobody prepares you for this.

没有。

No.

我不知道。

I didn't know.

我连遗嘱都没立。

I didn't have a will.

我当时想，为了什么？

I was like, for what?

就为了我储蓄账户里那78美元，在支票账户之间转来转去？

Like my $78 in my savings account that just goes back and forth between my checking?

是啊。

Yeah.

谁想要我的害虫收藏？

Who wants my pest collection?

我原以为没有。

I thought no.

好吧。

Okay.

是啊。

Yeah.

对啊。

Yeah.

谁会想要我那些Forever 21的塑料衣服呢？

Who wants all of my plastic clothing from Forever twenty one?

我得为此做个计划。

I got to have a plan for this.

必须得有个计划。

Got to have a plan.

我们当时没有。对啊。

We didn't Yeah.