Tuesday, 26 January 2010

Dinner with Roger Ebert

What would you miss most, or remember most, if you couldn't eat or drink?

Film critic Roger Ebert was diagnosed with thyroid cancer in 2002. He later underwent surgery and treatment for cancer in his salivary glands, and near his right jaw.
These surgeries resulted his inability to speak, eat or drink- he has a feeding tube.

In his very touching blog entry, Nil By Mouth, Roger Ebert tells his story of losing the ability to eat, drink, and speak... something that most of us just couldn't imagine.


I've been reading, in class, about the use of storytelling (aka the narrative) as a way for caregivers to better understand their clients, and as a way for individuals to understand, control, make sense of what's happening to them; as a way to cope, to heal. Another purpose of storytelling is to make the personal public- to connect with others, to share, to get others thinking and talking ("personal narratives energize public narratives"). Kind of describes a blog, right?

As you read Roger Ebert's story (or my summary, below), think about the role of storytelling:

If you have a journal or a blog (and blog about your life)... why? What does it bring to you?

If you don't write down your story- keep a journal, for example- do you think doing so would help you... cope with, understand, have control over.... certain situations in your life?

If you were to see a new health care provider- a doctor, dietitian, therapist etc.- would you feel more comfortable and honest telling them why you're there, or presenting them with a story? Which would represent you best?

Roger Ebert's Story (as summarized by me):

Ebert writes that he was never told that he might lose the ability to eat, drink or speak during his first surgery, and while subsequent surgeries were supposed to 'fix the problem', they failed... and, he recalls, "it gradually became clear that it wouldn't ever be right again. There wasn't some soul-dropping moment for that realization. It just...developed. I never felt hungry, I never felt thirsty, I wasn't angry because the doctors had done their best. But I went through a period of obsession about food and drink".

In his hospital room, he recounted his fantasies of drinking Root Beer to his brother-in-law and his wife, telling them that, for the first time in 60 years, he remembered, with complete clarity, driving with his father to the A&W Root Beer stand.

His brother-in-law, a religious man, interpreted Ebert's "story" in terms of his own faith, saying:

"Could be, when the Lord took away your drinking, he gave you back your memory".

Ebert states that: "those were the words I needed to hear. And from that time I began to replace what I had lost with what I remembered".

But while he could remember clearly the meal he regularly ordered at Steak n' Shake or the tastes and texture of the amazing "cheap" candy he used to buy, what he missed most about not eating was not the food, but the loss of dining. He ends his story:

"It may be personal, but for me, unless I'm alone, it doesn't involve dinner if it doesn't involve talking. The food and drink I can do without easily. The jokes, gossip, laughs, arguments and shared memories I miss. Sentences beginning with the words, "Remember that time?" I ran in crowds where anyone was likely to break out in a poetry recitation at any time. Me too. But not me anymore. So yes, it's sad. Maybe that's why I enjoy this blog. You don't realize it, but we're at dinner right now".


Jme said...

Great post. I often think about how best to engage people and find out about them as they find out about me. I think dinning together is a great way, as is this blog!

Anonymous said...

Wow. That's a powerful story. Thanks for sharing that with us. You ask great questions. I don't have a journal or a blog, but I have come across many very personal blogs- of people coping with illness and seeking support and energy from strangers, that become intimate friends. I think it would be wonderful if we could present our story, in written form, to a new doctor or health care professional. There are so many things that I would be more likely to write down than say in a rushed 10-minute meeting. They would also get such a better sense of who I am and why I'm there.
Great post.

ings said...

Really nice post. It's true that having a Blog and sharing personal experiences is a form of therapy for both the writer and the reader. Writing things down helps the writer reflect and the reader relate to someone else. For me, I see my Blog is like a memoir in the form of a scrapbook forever immortalized in the WWW. It helps me understand my feelings and myself a little better; but more important; knowing that others can read my thoughts makes me feel connected to something greater than myself. The possibility of a stranger relating to or finding comfort in something I write, makes Blogging that much more therapeutic!

Sybil Hebert, RD said...

Thanks for your comments Jme and Sharon and Ings!
Jme- glad you enjoy this blog!! :)
Sharon- I agree, presenting a new caregiver with a story would allow them to get much more of a "complete picture" than whatever I could manage to tell them. I guess it then depends on whether the caregiver would really read the story, for the sake of learning about their client.
Ings- I love your blog and have gotten to know you better through it... keep blogging!

Lindsay said...


The eloquent summary you provided of Ebert's personal narrative demonstrates once again demonstrates to me the enormous power food has to connect us all. He didn't miss the food itself but rather what it represented - times together with his family and friends. In an instant, the smell of cookies baking in the oven or the sight of Grandma's famous mashed potatoes can transport us to an entirely different place. Because of this, I view the SOCIAL aspects of nutrition communication (what our whole class is about) as an important topic for dietitians and other health care professionals to understand. Food is comfort. Food is hope. Food is life. Food means something different to each of us.

I agree that a blog is a certain kind of storytelling. Some people may feel like they are confiding in a close friend or a journal as they quickly type their thoughts down, perhaps not even considering the global community they are connecting with through the power of their words.

To answer some of your questions posed in your post:

As a child, I used to keep a journal. I enjoyed writing in it, and though I haven't looked at those entries for a long time now (they're probably quite funny!), I cherish the memories that are contained within the pages. Writing things down allows us to think about situations and ideas in a different way. When we process these thoughts that we then write down, they can't rush out as quickly as our verbal words; we can contemplate and consider, pausing in our brain or halting our fingers before those thoughts are written down. And then, there's always erasers and "backspace" keys. It’s not final until we decide it is so. The written word, vs. spoken word, requires more effort. It is often more eloquent too...hence why politicians recite speeches instead of simply ad libbing!

Narratives can be extremely personal. I believe an initial assessment of a patient or client is one way health care professionals learn details about an individual, but these often happen in very formulaic ways, directed by the professional. The provider asks certain questions, and the patient answers them. I wonder how different medical appointments would be if the only question the provider asked was, “Would you please tell me your story?” and let the patient decide what information to share! (I can picture a few responses to the scenario. Since this is so vastly different from how things are traditionally done, some people would scratch their heads and say, “What?!” And likely, the health care provider would not find out details that are important for his/her job to get done, so some guiding of the conversation would definitely be necessary). During my internship, a dietitian who I really respected opened up her conversations with her clients by saying, “Tell me about why you’re here” (or “What brings you in to see me today?”), empowering the client to determine the agenda of the appointment. Sybil, you mentioned this way of doing things in your post. This acts an invitation, allowing the client to determine which details to disclose. Of course, having his/her medical chart handy for reference also helps!

In the end, when others listen to their stories, they feel cared for. People want to be heard, and using narratives can be an effective tool to meet this goal.

Sybil Hebert, RD said...

Lindsay, thanks so much for your very eloquent comment!

You're right- food represents so many different things to different people- it can represent time spent with friends, hope, comfort... but can also represent fear or pain for some- maybe if they've struggled with an eating disorder, or their weight...

That's a great way for a health professional to start a meeting "what brings you in to see me today"- not just for the sake of asking "tell me what's wrong so i can fix it", but to allow the client to be heard and to really understand why they're there...

Thanks again!