Saturday, April 21, 2007

Still learning how to cope with the after-effects of cancer treatment

I was asked by Jeanne Sather, author of The Assertive Cancer Patient, how I handle the weird looks I get when I go out wearing my mask. At her suggestion, I have included what I wrote back to her (which stretched into wondering how to handle well-meaning folks asking why I am not eating with everyone else), as well as some of her suggestions. Please leave comments with other comebacks that you think of - I am about to start traveling for my job, and figure I should have my arsenal ready, along with extra packages of unsalted sunflower seeds.
---
Well, the only time I have had a really bad episode of someone staring at me and making a potentially rude comment was this week ON MY CAMPUS. I will send a message to the faculty member in charge of professionalism, offering to speak to the group of students and let them know "what's up with THAT?!" probably shouldn't be the first statement out of their mouths when seeing anyone looking a bit different on our medical center campus. (I had to rush to give a tour in the library, or I would have used the time to educate the little bugger on just what IS up with me, and how it is a miracle that I am still walking around in public.) I am working this episode up for adding it to the blog, and including links to sites that offer comebacks, if I can find any.
I dealt with the stares last summer (when I had the white burn cream all over my face) by just looking the folks straight in the eye and smiling, if they stared long enough. I guess it helps that I have been a 'booth babe' in a hundred exhibit halls, and have gotten paid to get folks to look my way - who knows. (I exhibited at medical conferences and trade shows, and still exhibit, for information resources. Used to do it for the National Library of Medicine, now do it for our library.) Rick heard a guy say something about 'you'd think they would wash the cold cream off before leaving home' to his female companion, and he just spoke directly to him that it was burn cream. I could send Rick over your way, if you need someone 6'4" and about 300 pounds to be your spokesperson, too! It helps that he is former military - gets their attention.
The other day, I was going into a church to visit the wonderful antique sale they have every year (what a cool way to raise money!), and as I entered, a small boy on the entrance stairs was staring at me, open-mouthed. I just whipped the visor off and said hello, and walked on by (if he had been older, I might have pulled the 'Darth Vader' reference on him, and said I just transported from the Death Star.) I ride my bike past a skateboard park, and know of one instance where someone watched me too long and got hit by another skateboarder, but I don't feel like I owe them an explanation. The cool times are when someone just directly asks me about the story on why I wear the visor. Usually this comes from older males, but I welcome the chance to give them a story they can repeat. I don't look as stylish as the lady in the banner on the company website: http://www.facevisor.com/ , but when I show up for meetings carrying the thing, I offer the chance for folks to try it on - and just might have sold a couple to some administrative assistants who realize this is cheaper than prescription sunglasses. I usually joke that I hope Paris Hilton will start looking like I do so it will become the fashion. Unfortunately, I am going to have to get something else that covers me up much more - my ear and neck hang out and both are getting all red again. Either this http://www.coolibar.com/01009.html , or this http://www.coolibar.com/02515.html if the visor could fit under the brim, or this http://www.stingray.com.au/merchandise/details.asp?productID=285&CatID=13 pulled up around my cheeks more and sunglasses. Just another example of all the extra coping stuff we get to learn and deal with... Maybe because I have always been large, having a few extra weird things about me hasn't really rattled me too much - I just bring them up in conversation, like showing a new piece of jewelry. When I got so bald from the radiation, I think the folks at work took it harder than I did (of course, they could see it and all I was worried about was not dripping white burn cream goo everywhere I went!!). I have my hair cut short, and the sides are different because hair won't grow back on all the radiated spots, but would really like to get it cut like Jamie Lee Curtis - just a cap's worth of hair.

My bigger issue now is the fact that I don't eat what 'regular' folks eat, and so much of what we do - meetings, celebrations, get-togethers - center on food. (Even the support group for head and neck cancer survivors offers unclaimed cookies and coffee each meeting - go figure.) I probably eat more healthily than I ever have (Kashi pilaf, sunflower seeds, blueberries - I like the way they pop in my mouth, water chestnuts, anything crunchy and not refined.) I can only get by holding a pint bottle of skim milk so long before someone comes over and asks how I liked something, or why wasn't I having any, or whatever. Trying to go back to the coping things taught in Weight Watchers has helped a bit, but usually the helpful friends I have start trying to figure out just what I could eat if I put my mind to it, and really get quite worked up about it. Maybe they have a hard time coming to the realization that I am not the same as before, or that cancer left a bigger shadow than they thought. (I have gotten used to the new 'real life', but others might take more time or won't at all.) I have no idea how I will handle the meetings at the conference - actually turned down some of the really fun things that are sponsored by vendors because the events were sit-down dinners. On the other hand, I am a very cheap date! I figure it will die down after a few weird times, when folks will start taking for granted that I am not one of the eaters they have to plan for. What I have said this week (it was National Library Week, and we had special treats and lunches for staff all week) is: since I can't taste it, eating that would be like eating at a bad restaurant, and I want good memories of our day together.
----
A bit of Jeanne's message to me:
I think the straight in the eye and smile approach works well. Most
people snap to when you do that. Sometimes I add, "Excuuuuuse me?",
and then the eye contact.

But that visor, which looks pretty cool, by the way, should give you a
range of possibilities. I will think on it. Darth Vadar's not bad,
especially for kids. Maybe something like, "It's my Darth Vadar look."
And nothing more, just keep moving.

The important thing, I think, is to be prepared so that these weird
encounters don't upset you. If you collect them for your blog, that
might make it fun. I saw something on one of the bulletin boards, YSC,
I think, about what to say to telemarketers, to have fun with them.
That's not quite what you want, but some of the women were really
getting into it, saying they were going to keep the list of snappy
things to say next to the phone.
----------
Cheeky Librarian again, here. Please add comments on how you have handled or would handle unsettling comments about your appearance. I have no problem walking on by with my head held high (hey, I can still hold my head high - that is a triumph in itself), but would also like to pull someone's tail if I have the chance and can think fast enough. (My one and only best comeback was in the summer of 1990, when I was about 10.5 months pregnant with my daughter, and a stranger asked me in a store when the baby was due. I looked him dead in the eye and said, "I am not pregnant.", and left him with his jaw hanging.) Walking around downtown Philadelphia or in small town Nebraska with my mask on and carrying skim milk shouldn't be that noticeable, right? !

5 comments:

Jeanne said...

Teri-I am so glad you put this up. It is a fabulous, thought-provoking post. And I will keep thinking of snappy comebacks for you.

Jeanne

Jeanne said...

How about answering in a foreign language? That always upsets Americans. What languages do you speak well enough to say something firm and emphatic? (Six words will probably do.)

I can give you the Japanese: Nan desu ka!
Which has lots of translations, but the best one here is just "What?!" Or, "What is it?!"

Say that with authority to people who are giving you weird looks.

Jeanne

scraps said...

Hi Teri! Know I have been one of the food offenders. Have a couple of thoughts for you. I keep forgetting you are surviving cancer. You are not, to me, your cancer. You are simply my friend and food is such a social event. Worse for you, many of us were raised that it is rude to eat in front of those who don't. And that we should be hospitable and offer others food. Unless we consciously think about it, we just don't censor that training.
As for comebacks, Comeback a friend used to use was "take a picture - it will last longer." It points out to people they are staring.
I think I would also be tempted to ask them if they were alright, then suggest that maybe they better get their eyes checked.
Or maybe you could offer to autograph their hands/cups/books, etc. After all, they have obviously recognized the famous Cheeky Librarian (you could even add the web address)...
And for small children, I have adopted the strategy of simply agreeing with them when they announce that I am fat. They are not trying to be rude (generally); they are sincerely trying to place what makes you different. if they ask questions, I give them an honest answer.
Being stared at is not easy but I, for one, am just glad you are around to be stared at.

Teresa Hartman said...

No way that you have been an offender, Scraps. You and I have enjoyed times together that have nothing to do with food - and, after all, you were the one that shared my last Thai meal, so you are fine! I am glad that I am more than the cancer to you. Here's to many more social events for us in the future!

Peg said...

Hey Teri -

Also so glad you wrote this, and hope you can mention it as part of your paper at MLA, even if I have to go to another session.
Recovering from arthritis brought on by forced immobility due to viral cardiomyopathy, with the heart failure again exacerbated by breast cancer chemo, hasn't helped my "large" status and the problems I have with standing. At least I now have walker to help negotiate our annual meeting...
All chronic illnesses have this emotional component, and the providers haven't learned to consider the quality of life issues along with the cure. Even in our own field, my paper that focused on the stages of dealing with cancer diagnosis and confronting death was rejected in favor of another that sounded very much like the lead-off. This is what is so hard for people to understand - we are more than the cancer, and there may well be other health issues going on...
Take care!

 
Who links to my website?