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This is the story of how I used comics to help me in my role as a caregiver for my mom in a way I couldn’t have imagined.
这是一个关于我用漫画来帮助我照顾母亲的故事，而且是用一种我以前难以想象的方式。
When I was thinking about how to tell that story, I talked a lot about it with my mom.
当我在思考如何讲述这个故事时，我和我的母亲聊了很多。
That’s because the story is hers.
因为这毕竟是一个关于她的故事。
My mom’s name is Jocelyn, and we’re not alike.
我母亲的名字是乔瑟琳，我们母女俩并不相像。
She’s an optimist.
她是个乐观的人。
I worry about all the terrible things that are going to go wrong.
而我则整天杞人忧天。
She’s impulsive. I’m cautious.
她感情用事，而我则谨小慎微。
We’re so different that it took me a long time to realize we had something important in common.
我们实在有太多的不同，我过了很久才意识到我们有一个重要的共同点。
We both respond to challenges by writing stories.
我们都用写故事来面对困难。
It took me such a long time to notice that we had this in common because the stories we wrote were so different.
我之所以过了很久才发现这一共同点，是因为我们写的故事有很大的不同。
She self-published a book of poems and short stories about living with Parkinson’s disease over the last 20 years.
她自己结集出版了一本短篇小说和诗歌的合集，主题是20年来她和帕金森病的斗争。
I write comics like this one.
我写的则是像这样的漫画书。
And my comics are about stuff like life with my mom.
这些漫画大多是关于我和我的母亲的生活。
Now, over the years, my mom and I got used to her physical health challenges, but a while ago she started having cognitive challenges too.
这么多年来，我们母女俩已经习惯了她生理方面的障碍，但是最近她在认知上也开始有障碍了。
She couldn’t write stories anymore, and communication between us kept getting harder.
她失去了阅读故事的能力，我们之间的交流也变得越来越困难。
My mom’s doctor didn’t get it.
我母亲的医生没法理解她的认知障碍。
He asked her questions like, “Well, what city are you in?”
他会问她一些问题，比如“你住在哪个城市？”
She knows the answer.
她知道答案。
He asked, “What year is it?”
他又问：“今年是哪一年？”
Well, she knew that answer too.
她也知道答案。
He just said, “You’re fine!”
他就会说：“你身体好的很！”
But my mom had been having hallucinations.
但是有时我母亲还会出现幻觉。
She sometimes thought she was surrounded by ghostly people.
她有时会觉得身边有一群幽灵包围着自己。
The doctor couldn’t see it, but my mom could ...and now so can you.
医生看不到这些幽灵，但是我母亲可以看到，现在你也可以看到。
I want to tell you about graphic medicine, a growing movement that refers to an unlikely partnership between health care and comics.
我想给大家讲讲“图像医疗”，这是一个正在发展中的领域，主要研究漫画和医疗保健的关系。
Now, at the heart of this movement is a kind of a comic called a graphic pathography.
这个领域的核心是一个叫做“图像式病史”的概念。
A graphic pathography just means a story about illness that’s told in a visual medium.
“图像式病史”的意思就是把疾病用可视化媒介表达出来。
This comic is that kind of a story.
漫画就是其中的一种。
You can see the ghostly hallucinations, and you’re invited to feel empathy for the patient’s experience.
你可以用眼睛看到幽灵的幻觉，你可以和病人的经历产生共情。
You can share my mom’s concern that her symptoms have not been recognized.
你可以感受到我母亲的担忧，担忧她自己的症状不被医生了解。
That’s one way that words and pictures can work together to tell a health care story.
文字和图片结合在一起就很好地讲述了一个疾病的故事。
And this is something anyone can do.
这是一件大家都可以去做的事情。
You might be thinking, “No, I’m not a comics artist.”
你可能会想：“我可不是什么漫画家”。
But that’s OK. You don’t have to be.
但没关系，你不用成为一个漫画家。
A health care story can benefit from very simple pictures.
用很简单的图画也可以讲好疾病故事。
I'm going to show you how, but we’ve got to go back a few years to a time before I drew those pictures that I just shared.
接下来让我好好解释，我们先往回倒几年回到我画刚才那些画之前的时候。
My mom’s condition got worse, and we were in the hospital a lot.
当时我母亲的身体每况愈下，我们常常要去医院。
By this time, hallucinations and early-stage dementia made it hard for her to explain what was going on.
她当时还有幻觉和早期痴呆症，所以她很难描述自己的症状。
And it was hard for the hospital staff to trust her.
而医院的工作人员也很难相信她说的话。
I was constantly hanging around the hospital.
我一直在医院里待着。
I felt like everything depended on me.
感觉好像所有的责任都在我身上了。
Doctors and nurses came and went, arriving and leaving unexpectedly.
医生和护士来来去去，来去都匆匆忙忙。
I felt like I was standing at the side of a highway, trying to get the attention of the drivers racing past.
我感觉我好像站在一个高速公路旁边，想要让飞驰而过的司机注意到我。
There was this one evening when I really had to get home to my kids, but I didn't want to leave the hospital because my mom had been having this weird symptom.
有这么一天晚上，我真的很需要回家照顾孩子，但是我又不想离开医院，因为我母亲当时出现了一个很奇怪的症状。
She was leaning off to the left, her head and upper body slumped sideways.
她身体一直向左边倾斜，她的头和上半身一直侧斜。
During the day, she’d slide out of her wheelchair, and her leg would get caught in the wheels.
白天时，她容易从自己的轮椅中滑出来，她的腿还会被轮子卡住。
And at night, her inability to straighten out her body made it hard for her to get a good sleep.
到了晚上因为她无法伸直自己身体所以很难睡个好觉。
