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. That’s because the story is hers.

当我在思考如何讲述这个故事时，我和我的母亲聊了很多，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. She’s an optimist. I worry about all the terrible things that are going to go wrong. She’s impulsive. I’m cautious. We’re so different that it took me a long time to realize we had something important in common. We both respond to challenges by writing stories. It took me such a long time to notice that we had this in common because the stories we wrote were so different. She self-published a book of poems and short stories about living with Parkinson’s disease over the last 20 years. I write comics like this one. And my comics are about stuff like life with my mom.

我母亲的名字是乔瑟琳，我们母女俩并不相像，她是个乐观的人，而我则整天杞人忧天。她感情用事，而我则谨小慎微。我们实在有太多处不同，我过了很久才意识到，我们有一个重要的共同点，我们都用写故事来面对困难。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。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缠斗，我写的则是像这样的漫画书。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. She couldn’t write stories anymore, and communication between us kept getting harder. My mom’s doctor didn’t get it. He asked her questions like, “Well, what city are you in?” She knows the answer. He asked, “What year is it?” Well, she knew that answer too. He just said, “You’re fine!” But my mom had been having hallucinations. She sometimes thought she was surrounded by ghostly people. The doctor couldn’t see it, but my mom could ... and now so can you.

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，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。我母亲的医生没法理解她的认知障碍，他会问她一些问题，比如“你住在哪个城市？”她知道答案。他又问：“今年是哪一年？”她也知道答案。他就会说：“你身体好的很！”但是有时我母亲还会出现幻觉，她有时会觉得身边有一群幽灵包围着自己，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. Now, at the heart of this movement is a kind of a comic called a graphic pathography. A graphic pathography just means a story about illness that’s told in a visual medium. This comic is that kind of a story. You can see the ghostly hallucinations, and you’re invited to feel empathy for the patient’s experience. You can share my mom’s concern that her symptoms have not been recognized. That’s one way that words and pictures can work together to tell a health care story. And this is something anyone can do.

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。这个领域的核心是一个叫做“图像式病史”的概念，“图像式病史”的意思就是把疾病用可视化媒介表达出来，漫画就是其中的一种，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，你可以感受到我母亲的担忧，担忧她自己的症状不被医生承认，文字和图片结合在一起，就很好地讲述了一个疾病的故事，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.” But that’s OK. You don’t have to be. A health care story can benefit from very simple pictures. 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.

你可能会想：“我可不是什么漫画家”但没关系，你不用成为一个漫画家。用很简单的图画也可以讲好疾病故事，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. By this time, hallucinations and early-stage dementia made it hard for her to explain what was going on. And it was hard for the hospital staff to trust her. I was constantly hanging around the hospital. I felt like everything depended on me. Doctors and nurses came and went, arriving and leaving unexpectedly. I felt like I was standing at the side of a highway, trying to get the attention of the drivers racing past. 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. She was leaning off to the left, her head and upper body slumped sideways. During the day, she’d slide out of her wheelchair, and her leg would get caught in the wheels. And at night, her inability to straighten out her body made it hard for her to get a good sleep.

当时我母亲的身体每况愈下，我们常常要去医院。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，而医院的工作人员也很难相信她说的话，我一直在医院里待着，感觉好像所有的责任都在我身上了，医生和护士来来去去，来去都匆匆忙忙。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，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，她身体一直向左边倾斜，她的头和上半身一直侧斜。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，到了晚上，因为她无法伸直自己身体，所以很难睡个好觉。

Now, the doctor was aware of this, and we’d ruled out the possibility that there was anything dangerous going on like a stroke. But still, I didn’t want to leave because the night staff were going to arrive and they didn't know my mom. This sideways posture didn’t have anything to do with the reason she’d been admitted to the hospital. They might just overlook it. Or if they did notice it, they might assume this was just her regular posture. And it really wasn’t. I didn’t know what to do. And that’s when it came to me: a picture could help. So I drew one. I wrote “Help for Jocelyn.”

当时的医生知道这个情况，我们认为有可能她有中风之类的危险。但是我还是不想离开，因为晚班的医院员工马上要上岗了，而他们并不认识我的母亲。我母亲这种向侧边倾斜的症状和她进医院的病症无关，他们可能会直接无视这种症状，或者有可能注意不到。他们可能会以为这是她日常就有的姿势，但是她平日里真的不是这样的。我不知所措，这时候我突然意识到，也许画一张画可以有用处，于是我画了一张画，我写道：“请帮帮乔瑟琳”。

“She leans to the left. Please support wheelchair and bed with pillows.” I drew a circle around the leg that kept getting injured, and I drew my mom lying in bed, and I wrote, “This is a comfy sleeping position!” I taped it up on the wall above her bed, and I left. And suddenly I felt I didn’t need to keep standing at the side of the highway. As if I just planted a big sign at the side of the road that anyone passing by would see, and I could go home.

她身体一直向左边倾斜，请用枕头来撑住她的床和轮椅。我圈出了那只经常受伤的腿，然后我画了我母亲躺在床上的样子，写道：“这个睡觉的姿势很舒服！”，我把这张画贴在她床头的墙上，然后离开了。突然间我意识到我不用一直站在高速公路的旁边，好像我只要在高速的路边树一个牌子，让所有路过的人都能看到，那我就可以回家了。

Thanks to that picture, I got a good night’s sleep. And so did my mom. When I went back the next morning, I saw that someone had propped up her left arm with a pillow. A nurse who I’d never met had seen the picture and known what to do.

多亏了那张图片，我睡了个好觉，我的母亲也睡了个好觉。第二天早上，当我回去的时候，我看到有人在她的左胳膊下面垫了个枕头，一个我不认识的护士看到了那张画，知道了要怎么做。

This was the first of so many pictures I drew to help my mom, and what surprised me was how fast this worked. I carried pictures like this around with me everywhere I went to pull out whenever I needed them to save me explaining things again. And I learned that a picture’s worth a thousand words that you just don’t have time to say.

我画了很多张帮助我母亲的画，这是第一张。让我惊讶的是，这些画真的很快就起作用了，不管去哪里，我都随身带着这种画，这样我就可以随时拿出来，不用重复解释一些事情。我认识到了，一图真的胜千言这些事情，用说的总是会时间不够。

Then my mom was moved to another part of the hospital, and there was a whole new team of staff members who didn’t know her, so I got ready to start drawing some new pictures. But then I thought ... when I drew those first pictures for my mom, I’d made choices about what health care issues to highlight on her behalf. At that time, she hadn’t had the words to speak for herself, so those pictures were just my best guesses about what might help. But big questions arise when you try to tell someone else’s story. That kind of collaboration depends on trust. So this time I sat down with my mom, and I asked her what pictures I should draw. Her answers surprised me.

后来我的母亲被转到了医院的另一个地方，那里有一整个团队的医院员工都不认识她。所以我准备开始画一些新的画，然后我想到我在给我的母亲画那第一批画的时候，我替她选择要突出哪些健康问题。那个时候，她没法为自己发声，所以都是我在尽量猜画哪些内容可能有帮助，但如果你尝试着讲一个别人的故事，就会出很大的问题。这种合作取决于双方的信任程度，所以这次，我和我的母亲一起坐下来。我问她，我应该画什么样的画，她的答案让我感到惊讶。

She said, “Please tell them to call me Jocelyn. They don’t know I go by my middle name!”

她说：“请让他们叫我乔瑟琳”他们不知道我一般用的都是中间名。

She said, “Please tell them I’m left-handed,” and she asked me to draw a food tray on which the items had been placed where her hand could reach them.

她说：“请告诉他们，我是个左撇子”她让我画一个餐盘上面所有的东西都放在她可以拿得到的地方。

She asked me to draw a picture that said, “Please remove lids!” That's because nerve damage in her hands makes fine motor skills a challenge.

她让我画一张图上面写“请把盖子拿掉”，因为她手部神经受损，很难做这些精细的动作。

She asked me to draw a picture that said, “Please fill cups halfway! A full cup is too heavy!”

她让我画一个杯子上面写“请把杯子装到半满”装满整杯的话太重了。

She asked me to draw a picture that said, “Please tell me your name! I can’t read your name tag.”

她让我画一张图上面写“请告诉我你叫什么”我看不到你的姓名牌。

And she asked me to draw a picture to go on the door of her room, so she would know which room was hers.

她还让我画一张图放在她房间的门上，这样她就可以知道哪个房间是她的了。

These small details were a big deal. They gave me insight into challenges I hadn't even been aware of. Now, in the picture of the door of my mom’s room, I drew her face. I’ve drawn my mom so many times I have a way of drawing her face, but the point isn’t that it has to look anything like my mom. It could be a circle with two dots for eyes. The point is that there’s a face; there’s a person with a voice. And if you listen to the picture, the voice can be heard because the face can be seen. The message matters more because it comes from someone.

这些小的细节其实意义很大，它们让我看到了很多我之前没意识到的困难。在我母亲房间门上的画里，我画了一张她的脸，我画我母亲的脸画了太多次了，我已经总结出一种固定的方式来画了。但是重点不在于要画的多像我母亲，甚至可以直接画一个圈里面画两个点当眼睛。重点是，一定要画一张人脸，这个人是能够发声的人，如果你仔细倾听这幅画正是因为有这个人脸，所以人的声音才能被听到，这其中的信息更重要，因为它来自一个活生生的人。

After I’d drawn all those pictures, my mom asked me ... “Now draw one more. Draw me looking healthy. Draw me walking with my walker, and label it: “Jocelyn’s Goal.” She said, “The staff here are just going to see a sick old lady in the hospital bed, someone who’s weak and confused. It’s easy to think that’s all I am.” She said, “I want them to understand what we’re working for. Sometimes you have to see it to believe it.”

在我画了这些画之后，我母亲跟我说，现在再画一张，画一张我健康的样子，画一张我用助行器走路的样子。写上：“乔瑟琳的目标”。她说：这里的工作人员只能看到一个躺在医院病床上的病恹恹的老妇人，一个脆弱而迷茫的人，他们很容易以为这就是我的全部了。她说：我想让他们明白，我们的目标是什么，有时候你只有用眼睛看到才能真正相信。

If I’m honest, I have to admit that sometimes I was the one who just saw the sick old lady in the hospital bed. And trying to capture my mom’s goal in a picture helped me believe in it more myself.

要我说实话，我必须承认，有时候我才是那个只能看到病床上病恹恹老妇人的那个人，通过用图画来表达我母亲的目标，让我自己更加相信这个目标。

My mom did reach her goal, and a few months later, she walked out of the hospital on her own two feet. She moved to long-term care, and for the first time her care needs were more managed and predictable. Now she did still hallucinate about being surrounded by ghostly people. But my mom and I have always responded to challenges by writing stories, and now we’ve learned to write stories together ... like this one.

后来我母亲真的完成了她的目标，几个月之后，她用自己的双脚走出了医院大门，她转为接受长期照护。这是第一次，她的需求变得更加容易管理和预测，现在她还是会有被幽灵包围的幻觉，但是我们母女现在会用故事创作来面对这些困难，现在我们已经学会了一起写故事。比如下面这个。

Here’s me asking my mom, “How’s the writing going?” And she responds, “Not great. Maybe I need a ghostwriter! I already have the ghost!”

这个是我在问我的母亲：写得怎么样了？她回答：不怎么样，也许我需要一个幽灵写手来帮我写，毕竟我身边已经有幽灵了。

Remember my mom’s doctor, the one who didn’t get it? That comic about him was part of this same story. It’s a comic my mom and I wrote together for a magazine dedicated to destigmatizing dementia and supporting people impacted by this disease. My mom’s name appeared in the byline right next to mine. And this comic was one of the ways we carefully documented her symptoms, which led to her being able to start a new medication that helped with those ghostly hallucinations. But more than that, this comic let her use her experience to help others whom the magazine could reach. And besides, isn't it just cool that a medical magazine these days has comics?

还记得我母亲的那个医生，还记得那个不太明白我母亲症状的医生吗？那个关于他的漫画就是这个故事的一部分，这是一本我和我的母亲一起创作的漫画，发表在一本致力于消除痴呆症的耻辱感的杂志上，帮助那些被这个疾病困扰的人们，我母亲的名字出现在署名中，就在我的旁边，这本漫画是我们仔细记录她的症状的方法之一，这让她可以开始使用新的药物来帮她缓解了那些幽灵的幻觉，但是不止于此。这部漫画让她能够用自己的经历来帮助这本杂志可以接触到的其他人，而且一本医学杂志上面有漫画，这件事本身不是就很酷吗？

My mom and I have continued to write comics together, and she’s continued to trust me with sharing the stories of life with dementia and life in long-term care during the pandemic. I think she's been OK with me sharing these vulnerable moments because she knows I’m not just telling the story of a sick old lady in the hospital bed. She knows I understand that even though I may be the one drawing the pictures, she’s a collaborator with an equal part in the work.

我和我的母亲继续在一起创作漫画，她也一直信任着我，由我来分享她和痴呆症共处的故事以及她在疫情之下接受长期照护的故事。我觉得，她之所以能够让我分享她的这些脆弱时刻，是因为她明白，我不只是在讲述一个在医院病床上的病恹恹的老妇人的故事，她知道我明白虽然我是那个真正画画的人，但是在这个过程中，她也同样参与其中。

And here’s my mom saying ... “Do not write about that in this comic!”

这是我母亲在说不要在漫画里说那些东西。

The reason this all started didn't have anything to do with art or writing or even health care. It came from me wanting to help my mom. And that’s the same power you have in your relationships with the people you care for. You know their health care needs, you live their stories with them. I understand you may still feel a bit skeptical about showing up at the doctor’s office with a sketchbook, but you may be surprised to discover that the people in your health care community are already familiar with graphic medicine, the growing movement at the intersection of health care and comics. They may already know how a picture can be an amazing time-saver or a tool for creating empathy and personal connections. Just imagine if your new doctor opened your chart and saw pictures that sparked curiosity about the person, not just the symptoms.

这件事情的开端和写作艺术这些事情都无关，甚至和医疗保健都无关。最开始只是我想要帮助我的母亲，而你也拥有这种力量，在你和你关心的人之间，，你懂得他们在健康上的需求你和他们一起经历风雨。我知道你可能还是持怀疑态度，居然要带着一本速写本去医生办公室，但是你可能会惊讶地发现，你所在的卫生保健社群中，已经有很多人很熟悉图像医疗这种发生在医疗保健和漫画之间的交叉变革，他们可能已经明白一幅图画可以省下很多时间，可以产生人与人之间的交流和共鸣。想象你的新医生打开了你的病历，看到了图画，从而产生了对这个人本身的好奇，而非只是对这个人的症状。

When I looked at all the pictures I’d drawn of my mom, I did see her symptoms, but I also see my mom. She’s there in all the words and pictures that have continued to hold us together.

当我翻看我画的我母亲的图片时，我确实能了解到她身上的症状，但是我也能看到我母亲这个人她就存在于这些维系着我们的的文字和图画之中。

Jocelyn: [Thanks for helping me!]

（SH：谢谢你对我的帮助）

SH: [I thought you were helping me.]

（乔瑟琳：不是你在帮助我吗）

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. That’s because the story is hers.

当我在思考如何讲述这个故事时，我和我的母亲聊了很多，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. She’s an optimist. I worry about all the terrible things that are going to go wrong. She’s impulsive. I’m cautious. We’re so different that it took me a long time to realize we had something important in common. We both respond to challenges by writing stories. It took me such a long time to notice that we had this in common because the stories we wrote were so different. She self-published a book of poems and short stories about living with Parkinson’s disease over the last 20 years. I write comics like this one. And my comics are about stuff like life with my mom.

我母亲的名字是乔瑟琳，我们母女俩并不相像，她是个乐观的人，而我则整天杞人忧天。她感情用事，而我则谨小慎微。我们实在有太多处不同，我过了很久才意识到，我们有一个重要的共同点，我们都用写故事来面对困难。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。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缠斗，我写的则是像这样的漫画书。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. She couldn’t write stories anymore, and communication between us kept getting harder. My mom’s doctor didn’t get it. He asked her questions like, “Well, what city are you in?” She knows the answer. He asked, “What year is it?” Well, she knew that answer too. He just said, “You’re fine!” But my mom had been having hallucinations. She sometimes thought she was surrounded by ghostly people. The doctor couldn’t see it, but my mom could ... and now so can you.

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，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。我母亲的医生没法理解她的认知障碍，他会问她一些问题，比如“你住在哪个城市？”她知道答案。他又问：“今年是哪一年？”她也知道答案。他就会说：“你身体好的很！”但是有时我母亲还会出现幻觉，她有时会觉得身边有一群幽灵包围着自己，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. Now, at the heart of this movement is a kind of a comic called a graphic pathography. A graphic pathography just means a story about illness that’s told in a visual medium. This comic is that kind of a story. You can see the ghostly hallucinations, and you’re invited to feel empathy for the patient’s experience. You can share my mom’s concern that her symptoms have not been recognized. That’s one way that words and pictures can work together to tell a health care story. And this is something anyone can do.

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。这个领域的核心是一个叫做“图像式病史”的概念，“图像式病史”的意思就是把疾病用可视化媒介表达出来，漫画就是其中的一种，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，你可以感受到我母亲的担忧，担忧她自己的症状不被医生承认，文字和图片结合在一起，就很好地讲述了一个疾病的故事，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.” But that’s OK. You don’t have to be. A health care story can benefit from very simple pictures. 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.

你可能会想：“我可不是什么漫画家”但没关系，你不用成为一个漫画家。用很简单的图画也可以讲好疾病故事，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. By this time, hallucinations and early-stage dementia made it hard for her to explain what was going on. And it was hard for the hospital staff to trust her. I was constantly hanging around the hospital. I felt like everything depended on me. Doctors and nurses came and went, arriving and leaving unexpectedly. I felt like I was standing at the side of a highway, trying to get the attention of the drivers racing past. 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. She was leaning off to the left, her head and upper body slumped sideways. During the day, she’d slide out of her wheelchair, and her leg would get caught in the wheels. And at night, her inability to straighten out her body made it hard for her to get a good sleep.

当时我母亲的身体每况愈下，我们常常要去医院。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，而医院的工作人员也很难相信她说的话，我一直在医院里待着，感觉好像所有的责任都在我身上了，医生和护士来来去去，来去都匆匆忙忙。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，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，她身体一直向左边倾斜，她的头和上半身一直侧斜。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，到了晚上，因为她无法伸直自己身体，所以很难睡个好觉。

Now, the doctor was aware of this, and we’d ruled out the possibility that there was anything dangerous going on like a stroke. But still, I didn’t want to leave because the night staff were going to arrive and they didn't know my mom. This sideways posture didn’t have anything to do with the reason she’d been admitted to the hospital. They might just overlook it. Or if they did notice it, they might assume this was just her regular posture. And it really wasn’t. I didn’t know what to do. And that’s when it came to me: a picture could help. So I drew one. I wrote “Help for Jocelyn.”

当时的医生知道这个情况，我们认为有可能她有中风之类的危险。但是我还是不想离开，因为晚班的医院员工马上要上岗了，而他们并不认识我的母亲。我母亲这种向侧边倾斜的症状和她进医院的病症无关，他们可能会直接无视这种症状，或者有可能注意不到。他们可能会以为这是她日常就有的姿势，但是她平日里真的不是这样的。我不知所措，这时候我突然意识到，也许画一张画可以有用处，于是我画了一张画，我写道：“请帮帮乔瑟琳”。

“She leans to the left. Please support wheelchair and bed with pillows.” I drew a circle around the leg that kept getting injured, and I drew my mom lying in bed, and I wrote, “This is a comfy sleeping position!” I taped it up on the wall above her bed, and I left. And suddenly I felt I didn’t need to keep standing at the side of the highway. As if I just planted a big sign at the side of the road that anyone passing by would see, and I could go home.

她身体一直向左边倾斜，请用枕头来撑住她的床和轮椅。我圈出了那只经常受伤的腿，然后我画了我母亲躺在床上的样子，写道：“这个睡觉的姿势很舒服！”，我把这张画贴在她床头的墙上，然后离开了。突然间我意识到我不用一直站在高速公路的旁边，好像我只要在高速的路边树一个牌子，让所有路过的人都能看到，那我就可以回家了。

Thanks to that picture, I got a good night’s sleep. And so did my mom. When I went back the next morning, I saw that someone had propped up her left arm with a pillow. A nurse who I’d never met had seen the picture and known what to do.

多亏了那张图片，我睡了个好觉，我的母亲也睡了个好觉。第二天早上，当我回去的时候，我看到有人在她的左胳膊下面垫了个枕头，一个我不认识的护士看到了那张画，知道了要怎么做。

This was the first of so many pictures I drew to help my mom, and what surprised me was how fast this worked. I carried pictures like this around with me everywhere I went to pull out whenever I needed them to save me explaining things again. And I learned that a picture’s worth a thousand words that you just don’t have time to say.

我画了很多张帮助我母亲的画，这是第一张。让我惊讶的是，这些画真的很快就起作用了，不管去哪里，我都随身带着这种画，这样我就可以随时拿出来，不用重复解释一些事情。我认识到了，一图真的胜千言这些事情，用说的总是会时间不够。

Then my mom was moved to another part of the hospital, and there was a whole new team of staff members who didn’t know her, so I got ready to start drawing some new pictures. But then I thought ... when I drew those first pictures for my mom, I’d made choices about what health care issues to highlight on her behalf. At that time, she hadn’t had the words to speak for herself, so those pictures were just my best guesses about what might help. But big questions arise when you try to tell someone else’s story. That kind of collaboration depends on trust. So this time I sat down with my mom, and I asked her what pictures I should draw. Her answers surprised me.

后来我的母亲被转到了医院的另一个地方，那里有一整个团队的医院员工都不认识她。所以我准备开始画一些新的画，然后我想到我在给我的母亲画那第一批画的时候，我替她选择要突出哪些健康问题。那个时候，她没法为自己发声，所以都是我在尽量猜画哪些内容可能有帮助，但如果你尝试着讲一个别人的故事，就会出很大的问题。这种合作取决于双方的信任程度，所以这次，我和我的母亲一起坐下来。我问她，我应该画什么样的画，她的答案让我感到惊讶。

She said, “Please tell them to call me Jocelyn. They don’t know I go by my middle name!”

她说：“请让他们叫我乔瑟琳”他们不知道我一般用的都是中间名。

She said, “Please tell them I’m left-handed,” and she asked me to draw a food tray on which the items had been placed where her hand could reach them.

她说：“请告诉他们，我是个左撇子”她让我画一个餐盘上面所有的东西都放在她可以拿得到的地方。

She asked me to draw a picture that said, “Please remove lids!” That's because nerve damage in her hands makes fine motor skills a challenge.

她让我画一张图上面写“请把盖子拿掉”，因为她手部神经受损，很难做这些精细的动作。

She asked me to draw a picture that said, “Please fill cups halfway! A full cup is too heavy!”

她让我画一个杯子上面写“请把杯子装到半满”装满整杯的话太重了。

She asked me to draw a picture that said, “Please tell me your name! I can’t read your name tag.”

她让我画一张图上面写“请告诉我你叫什么”我看不到你的姓名牌。

And she asked me to draw a picture to go on the door of her room, so she would know which room was hers.

她还让我画一张图放在她房间的门上，这样她就可以知道哪个房间是她的了。

These small details were a big deal. They gave me insight into challenges I hadn't even been aware of. Now, in the picture of the door of my mom’s room, I drew her face. I’ve drawn my mom so many times I have a way of drawing her face, but the point isn’t that it has to look anything like my mom. It could be a circle with two dots for eyes. The point is that there’s a face; there’s a person with a voice. And if you listen to the picture, the voice can be heard because the face can be seen. The message matters more because it comes from someone.

这些小的细节其实意义很大，它们让我看到了很多我之前没意识到的困难。在我母亲房间门上的画里，我画了一张她的脸，我画我母亲的脸画了太多次了，我已经总结出一种固定的方式来画了。但是重点不在于要画的多像我母亲，甚至可以直接画一个圈里面画两个点当眼睛。重点是，一定要画一张人脸，这个人是能够发声的人，如果你仔细倾听这幅画正是因为有这个人脸，所以人的声音才能被听到，这其中的信息更重要，因为它来自一个活生生的人。

After I’d drawn all those pictures, my mom asked me ... “Now draw one more. Draw me looking healthy. Draw me walking with my walker, and label it: “Jocelyn’s Goal.” She said, “The staff here are just going to see a sick old lady in the hospital bed, someone who’s weak and confused. It’s easy to think that’s all I am.” She said, “I want them to understand what we’re working for. Sometimes you have to see it to believe it.”

在我画了这些画之后，我母亲跟我说，现在再画一张，画一张我健康的样子，画一张我用助行器走路的样子。写上：“乔瑟琳的目标”。她说：这里的工作人员只能看到一个躺在医院病床上的病恹恹的老妇人，一个脆弱而迷茫的人，他们很容易以为这就是我的全部了。她说：我想让他们明白，我们的目标是什么，有时候你只有用眼睛看到才能真正相信。

If I’m honest, I have to admit that sometimes I was the one who just saw the sick old lady in the hospital bed. And trying to capture my mom’s goal in a picture helped me believe in it more myself.

要我说实话，我必须承认，有时候我才是那个只能看到病床上病恹恹老妇人的那个人，通过用图画来表达我母亲的目标，让我自己更加相信这个目标。

My mom did reach her goal, and a few months later, she walked out of the hospital on her own two feet. She moved to long-term care, and for the first time her care needs were more managed and predictable. Now she did still hallucinate about being surrounded by ghostly people. But my mom and I have always responded to challenges by writing stories, and now we’ve learned to write stories together ... like this one.

后来我母亲真的完成了她的目标，几个月之后，她用自己的双脚走出了医院大门，她转为接受长期照护。这是第一次，她的需求变得更加容易管理和预测，现在她还是会有被幽灵包围的幻觉，但是我们母女现在会用故事创作来面对这些困难，现在我们已经学会了一起写故事。比如下面这个。

Here’s me asking my mom, “How’s the writing going?” And she responds, “Not great. Maybe I need a ghostwriter! I already have the ghost!”

这个是我在问我的母亲：写得怎么样了？她回答：不怎么样，也许我需要一个幽灵写手来帮我写，毕竟我身边已经有幽灵了。

Remember my mom’s doctor, the one who didn’t get it? That comic about him was part of this same story. It’s a comic my mom and I wrote together for a magazine dedicated to destigmatizing dementia and supporting people impacted by this disease. My mom’s name appeared in the byline right next to mine. And this comic was one of the ways we carefully documented her symptoms, which led to her being able to start a new medication that helped with those ghostly hallucinations. But more than that, this comic let her use her experience to help others whom the magazine could reach. And besides, isn't it just cool that a medical magazine these days has comics?

还记得我母亲的那个医生，还记得那个不太明白我母亲症状的医生吗？那个关于他的漫画就是这个故事的一部分，这是一本我和我的母亲一起创作的漫画，发表在一本致力于消除痴呆症的耻辱感的杂志上，帮助那些被这个疾病困扰的人们，我母亲的名字出现在署名中，就在我的旁边，这本漫画是我们仔细记录她的症状的方法之一，这让她可以开始使用新的药物来帮她缓解了那些幽灵的幻觉，但是不止于此。这部漫画让她能够用自己的经历来帮助这本杂志可以接触到的其他人，而且一本医学杂志上面有漫画，这件事本身不是就很酷吗？

My mom and I have continued to write comics together, and she’s continued to trust me with sharing the stories of life with dementia and life in long-term care during the pandemic. I think she's been OK with me sharing these vulnerable moments because she knows I’m not just telling the story of a sick old lady in the hospital bed. She knows I understand that even though I may be the one drawing the pictures, she’s a collaborator with an equal part in the work.

我和我的母亲继续在一起创作漫画，她也一直信任着我，由我来分享她和痴呆症共处的故事以及她在疫情之下接受长期照护的故事。我觉得，她之所以能够让我分享她的这些脆弱时刻，是因为她明白，我不只是在讲述一个在医院病床上的病恹恹的老妇人的故事，她知道我明白虽然我是那个真正画画的人，但是在这个过程中，她也同样参与其中。

And here’s my mom saying ... “Do not write about that in this comic!”

这是我母亲在说不要在漫画里说那些东西。

The reason this all started didn't have anything to do with art or writing or even health care. It came from me wanting to help my mom. And that’s the same power you have in your relationships with the people you care for. You know their health care needs, you live their stories with them. I understand you may still feel a bit skeptical about showing up at the doctor’s office with a sketchbook, but you may be surprised to discover that the people in your health care community are already familiar with graphic medicine, the growing movement at the intersection of health care and comics. They may already know how a picture can be an amazing time-saver or a tool for creating empathy and personal connections. Just imagine if your new doctor opened your chart and saw pictures that sparked curiosity about the person, not just the symptoms.

这件事情的开端和写作艺术这些事情都无关，甚至和医疗保健都无关。最开始只是我想要帮助我的母亲，而你也拥有这种力量，在你和你关心的人之间，，你懂得他们在健康上的需求你和他们一起经历风雨。我知道你可能还是持怀疑态度，居然要带着一本速写本去医生办公室，但是你可能会惊讶地发现，你所在的卫生保健社群中，已经有很多人很熟悉图像医疗这种发生在医疗保健和漫画之间的交叉变革，他们可能已经明白一幅图画可以省下很多时间，可以产生人与人之间的交流和共鸣。想象你的新医生打开了你的病历，看到了图画，从而产生了对这个人本身的好奇，而非只是对这个人的症状。

When I looked at all the pictures I’d drawn of my mom, I did see her symptoms, but I also see my mom. She’s there in all the words and pictures that have continued to hold us together.

当我翻看我画的我母亲的图片时，我确实能了解到她身上的症状，但是我也能看到我母亲这个人她就存在于这些维系着我们的的文字和图画之中。

Jocelyn: [Thanks for helping me!]

（SH：谢谢你对我的帮助）

SH: [I thought you were helping me.]

（乔瑟琳：不是你在帮助我吗）