Don’t ask me how I am!

Friday, March 04, 2011

Years ago, over lunch with a friend who had been treated for very advanced breast cancer, I asked the question many of us ask when we see people we haven’t seen for a  while: “How are you?” My friend very kindly responded that the question was one to which, given her situation, she couldn’t possibly know the answer. Better for her if I asked “How are you today?” or “What kind of a day are you having?”

If you think about it, none of us can really know “how we are” on any given day. We can know how we feel, but not what’s going on inside our bodies. For example, people who turn out to have breast cancer often feel healthy until they are told by their doctors that that lump found on their most recent mammogram is not benign.

And we can sometimes not tell by looking at someone that s/he is ill. If you look at me  now for example, I look pretty much as I always have. My hair isn’t falling out, my skin tone is good, and my smile is pleasant. But I have a disease — ALS, or Amyotrophic lateral sclerosis — a degenerative neurological illness for which there is no cure.

When people ask me how I am, it drives me nuts. I don’t want to discuss with everyone I see what it means to live everyday with a disease that I know will make me less and less functional, and ultimately kill me. How fast this will happen is unknown, but that doesn’t make it easier to talk about.

What kind of a day I’m having, or how I am today, is an easier question to answer: I’m tired or not, it’s easy or hard for me to walk, or I have too much going on to tell. But at least these kinds of questions don’t feel as prying and insensitive as “how are you?”

Christopher Hitchens, author and journalist who has advanced esophageal cancer, recently said something when asked how he was that is worth remembering. He put it something like this: “I’m dying. So are you. But I’m doing it faster than you are.”

I’m too busy living to spend time answering questions about my thoughts on dying. And, in any event, I don’t want to discuss that topic with everyone I see. So, don’t  ask me how I am.

P.S. Big thanks to Roche Janken for setting up my website, and encouraging me to write this particular blog.

© Barbara A. Brenner March, 2011

 

 

 

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58 Responses to Don’t ask me how I am!

  1. Susan Tobin says:

    Thank you, Barbara, for the continuance of your irrepressible insight and promulgating words that those of us who live with loved ones who face life-challenging disease need and want to hear. I love you. Always have; always will.

  2. The phrase “how are you” (without a question mark at the end) has become such an automatic part of our greeting someone upon a visit that it has lost its real meaning as a query into the person’s medical / mental condition. This is true in Persian–my mother language–as well as in English. (The French and the Germans ask “how goes it?” which is even less personal, and the automatic response translates “it goes well”, whether “it” does or does not go all that well. I have not yet figured out what “it” refers to, but that may be because I am not fluent in those wonderful languages.)

    My automatic response to “How are you” may be “I am alright” even if I am suffering from a bad case of urinary tract infection, a cold, or a chronic backache–or all three at the same time. I know, none of these ailments is going to kill me–at least not in the short term–but, still, my automatic response may be “fine, and you?” without really wanting to know the full answer–or even a partial one.

    That is the way I deal with the question now, at 72, approaching the end of my life, but so far without a terminal illness. When/if that happens, I am sure the phrase “how are you?” will elicit an entirely different feeling and response, quite possibly similar to what you have so eloquently described, Barbara. I will try to keep my mouth shut (at least on that automatically uttered phrase) next time I see you, hopefully very soon.

  3. Rachel says:

    First, I love the title of your blog. The irony and pun is awesome.

    Second, MIL GRACIAS for writing this missive.

    I can relate to your reflections and irritation about the seemingly benign question of “how are you.” When my doctor asked me how I was, right after I was diagnosed with breast cancer and was getting prepped for a mastectomy, I laughed and just said that other than having cancer, I was doing just great and felt healthy. What else could I say?

    My dying mother refused to talk about how she felt about her impending death. Why bother and dwell on the one thing in her life over which she had no control? In some ways that line she drew in the sand made it easier for us to spend time together and live day-to-day. Although I’m not a great Hitchens fan, his quote is perfect. I remember reading that article a few months ago.

    Thanks for writing and keep on bloggin’.

  4. Vidita Chopra says:

    Hi Barbara,
    Great website! Thank you for sharing this with me. I really appreciate your honesty and insight. However, I do want to remind you of something that I find missing in this article. I don’t want you to forget that people who ask you how you are doing care about you and most likely love you. If I have ever asked you how you were doing it was not to invoke any negative thoughts but rather to gauge if I could do something to help. I don’t think people mean to be prying or insensitive when they ask such things. Ignorant, yes, but I can see that this blog will remedy that :) I look forward to your next blog!

  5. Irma Herrera says:

    Thanks Barbara for providing some tips/tools to help me be a better friend to people I care about, present company included. A couple of days ago I said to Mark, I feel really good today. Great he said, how come? I didn’t know the answer, and it wasn’t until I said it that I realized how sad and overwhelmed I’d been feeling the last few days. Worried about things I can’t control, like decisions that our teenage son makes that I think demonstrate poor judgment and which I fear will make life more difficult for him.

    How I feel right now is thankful for big and little things, an excellent Chinese dinner with friends at a hole in the wall restaurant in downtown Oakland, the internet, my family, news from the BBC, a car that works, and my good fortune to have friends like Barbara and Susie. Random thoughts.

  6. Beautiful, elegant website, dear Barbara; it certainly reflects your persona.
    Thank you for continuing to bring up the difficult subjects–those that may be too frightening for some of us to even think about on our own right now.
    I agree with Irma that this first blog will help me be a better friend and I’ve forwarded your blog address to several loved ones with difficult chronic conditions.

  7. bella August says:

    It is great to hear from you! You have raised a thought-provoking comment, as you can always be counted on to do. I found myself asking that automatic question to a good friend in a bad situation, and had to say right after it came out of my mouth, “dumb question.” The photo at the top is gorgeous, and I wonder if it is a place you have visited. I am also curious to know your thoughts on the recent turn of NBCC, if you ever feel like sharing them. I’m not sure what to make of it yet. Un abrazo, bella

    • bbzinger says:

      Hi, Bella,

      Nice to hear from you, and I will publish your comment after I answer your questions. The photo is one I took two summers ago at Lake Louise, in the Canadian Rockies. One of my very favorite places! We have been there many times. I do have thoughts about the NBCC turn, and it’s a topic for a future blog so stay tuned. I still have a lot to say about breast cancer, and this topic has been long on my mind. xxoo, BB

  8. eileen hansen says:

    I am so glad you are blogging! Thank you for continuing to inspire and provoke. The title you chose is perfect and bbzinger is a great fit. Keep ‘em coming!

  9. kate says:

    I love this blog. I love your insight and truth-telling and I love you my friend.

  10. Mary Hughes says:

    Where ever you are, whatever is happening, you are teaching. I am learning.
    What a gift. To give and to get. Thank you.

  11. Julie Randolph says:

    Hey, there, Ms. Barb! I’m glad to have a way to keep up with you. Thanks for the blog and for your openness. This post (along with your friends’ comments) reminds me to stop paying so much attention to what scares me and, instead, to see and hear the person in front of me, in this moment.

  12. Scott says:

    Hi Aunt Barbara! I hope you stick to keeping this updated. Love, Scott.

  13. Lyllian Wendroff says:

    Hi healthy Barbs,
    Great blog. When people asked me how I felt after Alan’s death, I never knew how to respond. I wasn’t feeling anything. I hope we can all take your suggestions seriously.

  14. Richard Levine says:

    Others have already said it better than I can. Great to have your insights. Love the blog title. Even like your About page. (How rare is that?) Think of you often, and your writing and thinking have always reinforced that.

  15. Jo Ann madigan says:

    Bravo friend! Love the site. Love that you are blogging and that you helped me right out of the gate. Love lake Louise. Love you!

  16. Sharon E. says:

    Hi Cousin Barbara,
    It is wonderful to read your blog. Thank you for helping me become more aware of my language so I can be more empathetic and helpful to you and others living with illness and disability. Keep up the great work. I’m looking forward to your next entry.
    Love,
    Sharon

  17. Bev Scott says:

    Barbara, Thanks for your insight, courage and clarity in helping us be more sensitive and to be really present with the person we are with.
    Thank you.

  18. Jeanne DeJoseph says:

    Hi Barb – the picture is beautiful – you are beautiful – and the disease sucks! (another button?). Know that Sue and I love you – thanks for giving all of us who love you a way to keep in touch.

  19. Sandy Glickfeld says:

    Dear Barbara, Thank you for grabbing me (us) by the collar with a little shake to face your deep authenticity. You grabbed my listening too. What you said is personal yet universal, I think. I appreciate the humbling reminder to stop and think before thoughtless utterances fall out of my mouth. I know I will stumble again and I can ask for forgiveness. Thanks for sharing yourself this way. With gratitude and love…

  20. roz ehudin says:

    Ah at last, the student becomes the teacher. Actually with you, Barbara, the reversal happened quite a while ago. Irv and I are thinking of you. When we sang Debbie Friedman’s Misheberach last night, we sent thoughts to you and we spoke your name as we shall continue to do.
    Thank you for the blog and for sharing your words.
    Hugs to you and Susie,
    Roz

  21. Barbara Ehrenreich says:

    Thanks, Barb. Ten years after my bout with breast cancer, I still get people I haven’t seen for a while asking, “How ARE you?” and my unspoken response is always, “Strong enough to give you a punch in the nose!”

  22. Peg Stevenson says:

    Thanks thanks thanks for your admonitions and insights. Love the site, the pix, you.

  23. Mary Jo Kahn says:

    Well put.
    Keeping us updated is a generous use of your time and energy. Thank you.

  24. Donna Brorby says:

    It is a wonderful gift that you guide your friends how to be with you as you face living with ALS. Thank you for every direction you are able to give.

    You have always had the gift for living fully. You model it now, again. You inspire me.

    I am resolved never use “how are you?” as a routine greeting; never to ask that question unless I really inviting an honest, serious answer; and to respect your, Barbara, and my depressed brother’s and anyone elses’ express wishes with respect to inquiries about how they feel. I would second the comment that someone else wrote, I want to know as much about how you are and what you are thinking and feeling as you are wanting to share with me, no more and no less.

  25. Rachel Cramer says:

    I think that when people ask “How are you?,” they are implicitly asking how you are feeling as opposed to asking for a medical assessment. Being that life is not much like a deposition (unless you’re talking to me maybe), you can answer whatever question you wish the person had asked instead. The great thing about that approach (other than the sheer perversity of it) is that it allows you to experience their caring about you as well as giving you a chance to be compassionate toward difficulties they may be facing in not knowing what to say in the face of serious illness. After all, it’s not like our culture gives us much guidance and even when we draw on our own experience, there is no way to know that what we would have preferred is what someone else wishes would be said. Barbara, I’ve been arguing with you since I was 15, I see no reason to stop now. Rachel

    • bbzinger says:

      I’m glad you’ve never had a life-threatening illness, Rachel. I guess how you hear this depends on where you are in your life. Thanks for writing. BB

  26. Denise Martini says:

    Thank you for your clarity, Barbara- so beautiful and right on! Please keep teaching me/us how to be with you, so I/we can learn how to be with you and others too.
    Love, Denise

  27. Judy Brady says:

    Good going, Barbara! You are kinder than I am; I haven’t been “fine” for years, and I am perfectly aware of the expectation when I am asked how I am that I reply, “Fine.” What I really want to say (and now maybe I will) is: “I am shitty, thank you…and how are you?” And you cannot imagine how pleased I would be if when I asked the perfunctory “how are you,” that someone would reply “Shitty.” Ah, the truth. So much more palatable that platitudes, don’t you think?

    • Vera Purcell says:

      What a great website. I hope your music will lead you to other responces to that question you detest, like Piazzolla has made my day because I can count the whole damn piece! and make it dramatic and beautiful. How many people can say that?
      Keep those fingers making great music!

    • bbzinger says:

      I don’t think I would say I’m kinder than you are, Judy. But, like you, I have always considered the truth more palatable than platitudes.

  28. Allison Young says:

    Hi Barbara,

    I just found your blog and this entry really speaks to me. I am working at CPMC now and ask patients all the time “How are you?” Of course my intent is to ask about their feelings and thoughts in the moment, and I didn’t realize it doesn’t always come across that way, so you have given me a new way to communicate to them and hopefully help them more.

    I am glad you are writing and look forward to reading more of your words. I hope you are taking great care of yourself and living life to the fullest.

    • bbzinger says:

      Alison,

      I’m so glad to hear from you and to know that what I have written is helpful to you. Thanks so much for your kind words.

  29. karen topakian says:

    I’m glad to see you are on your way blogging. There will be no stopping you know. Thank god. catchy title!

  30. mary Whitehead says:

    Hitchens has written some great thoughts. I am so glad to know, Barbara, that you are you, in spite of all diversities, and that you continue to grow with the flow of tidal waves in your life. Sending love and admiration to you always. And your thoughts are ever valuable – thanks for putting them down in your blog. Miss seeing you.

  31. Cindy Pearson says:

    Hi Barbara,

    Once again, you’ve taken a horrible personal situation & found a way to respond that moves the world forward, at the same time as being the right thing for you as a person. Like one of the others who has already left you a message said, I’m glad you’ve created this website so those of us who have been moved by you will be able to keep interacting with you.

    I imagine you’re not intending to make this website all about your diagnosis, and I want you to know that I’m eager to read your thoughts about breast cancer, advocacy, bad corporate behavior and anything other opinions you want to share.

    I AM sorry that you’re dying faster than I am (at least as far as I know) but I’m so glad you’re staying engaged and throwing your Barbs. Can’t wait to read the next one.

  32. tom lockard says:

    bb, can’tt beatt banff. nice snapp.

    • bbzinger says:

      Glad you like the pick, Tom. Lake Louise is one of my very favorite places. I love this picture (guess that’s why I took it).

      BB

  33. Deb Forter says:

    So really….how are you?…..I’m kidding, I’m kidding! I hope your smiling, and your eyes are as bright as ever today, right now. I share your frustration with the inadequacy of words. I hope you can feel me smiling at you. Your candor and wit are unscathed which is a blessing for us all. Rat on, sistah! Your barbs will teach us all a thing or two in the years ahead. And I for one am eternally grateful! Looking forward to more!

  34. Gayle Shiba says:

    With grace, class, and brutal honesty…. Thank you for sharing these experiences and your thoughts with all of us. It has taken me awhile to respond…words are so inadequate and yet the emotions and feelings that I have for you knowing what you are experiencing is freeing in a sense because of this blog… that I can say things (and not wonder if it is the “wrong” thing to say) because you will let me and the rest of us know with your Barb style what you think…and I wouldn’t wish to have it any other way. Even though I teach students about communicating and interacting with the people that they care for, I am planning to share your blog with them… if that is okay with you. It is easier when caring for “patients” than it is when you care about and for a friend. You are indeed a special woman and as always continuing to share and advocate for people even as you are dealing with ALS. Love to you and Susie….

    • bbzinger says:

      So nice to see a message from you, Gayle. Share away please. As June Jordan said, “each one, teach one.”

  35. Lauren John says:

    Nu, Barbara?
    That’s what I will ask here instead of “how are you?”
    It’s Yiddish, its affectionate, and its all purpose.
    Glad you are blogging and blogging well.
    And my favorite post so far is Barbara’s letter to Kaiser.
    Because people could actually cut and paste it and use it in their own red tape e-mails.
    Love, Lauren (and George) John

  36. Kathi Turner says:

    Hi Barb,

    My love to you and Susie. I continue to follow your blog and am deeply moved by your personal journey as well as its translation into activism for the collective. This has always been your way, so no surprise. What you share about your experience is at the same time so personal and yet so universal… we never ask for wisdom to come in this way, but sometimes it does and there you are.

    I send you much love, we are Grandmas of a one year old now and reveling in it.

    Kathi

  37. JoAnn Loulan says:

    Apparently Dr Oz just talked about increase in thyroid cancer in women thought to be from mammas & dental stays. Just a quick comment. More later. Love it that of course you’re kicking ass & taking names Barbara! XoJ

  38. JoAnn Loulan says:

    By mammas I mean mammas hate autocorrect! I was correct to begin with!! Xo

  39. JoAnn Loulan says:

    And by dental stays I mean xrays. Grrr

  40. JoAnn Loulan says:

    Omg mammas came out again instead of MAMMOS!!!

  41. Steve Halle says:

    When people ask me, “How are you?”, I often answer “Terrible, how are you?”. I don’t do this because I am asking for special attention and want the person to stop and “Pay attention to me!”. I don’t care for that. And I am happily quite healthy. I have the daily trials and tribulations that most healthy 40something’s with kids have. Really..no big deal. I answer this question that way to try and make the asker reflect, to THINK. Most people, when asking this question, don’t want to know any REAL answer other than “I’m fine”. It makes them uncomfortable when the askee, is NOT FINE. BTW…all things considered, I’m fine.

  42. Barbara Cohn says:

    Hi Barbara,
    I am so pleased to hear from you. I ask about you as I work with the CABCRP folks and with Marj. I learned the essence of this blog watching my husband as he moved through his lymphoma journey which ended nearly exactly 5 years ago. You might add–don’t ask the ones left behind how they are doing either, because they too are just getting through each day-confirming what you already know–that living itself is the same journey for everyone, with different paths and just according to different and always unknown schedules.

  43. Arlene Mayerson says:

    Hey Barb,
    I am just so glad that I found this blog because I have been thinking about you and wanted to just say, hi and hope you are doing o.k. (today). I have always thought of you as one of the coolest people I know. Cool meaning, involved, passionate, effective, great hair, smart, savy, ironic, cultured and on and on. Thinking of you.
    Bets always,
    Arlene

  44. vera purcell says:

    Barbara,
    What a Beautiful piece of music to air with your interview, and very artistically played.
    You have an abundance of talent in so many different aspects of life! Please continue to share with all of us! You are a beacon of light and hope for all!!!!
    Love
    Vera & Patricia Purcell

  45. vera purcell says:

    Barbara,
    What a Beautifuj piece of music to air with tour interview, and very artiscally played.
    You have an abundance of talent in so many different aspects of life! Please continue to share with all of us! You are a beacon of light and hope for all!!!
    Love
    Vera & Patricia Purcell

  46. Pingback: Can We Watch Our Language, Please? | Healthy Barbs

  47. Ollie says:

    I am in the same boat as you with bulbar onset. I don’t think people mean to be insensitive, but they sure are. I think what bothers me most is peoples’ ” suggestions” on how I could manage better . This illness makes me so angry and frustrated. I have lost the two things I did best, talking and helping and my love for food. I also had great plans for how I was going to ” repurpose” after retirement but it was not to be .

  48. Judith Gedalia says:

    A huge crime here is that the FDA kowtows to big Pharma and apparently has no use for educated patient advocates. Time is critical in many cases and in these trials, stopping points should have been set up by the initial IRB. Small thinking by people with blinders.

  49. abby abinanti says:

    Finally….I was reading this as an e-mail and just realized that I need to blog it or whatever it is called….
    my response was that I find it appalling that they think for one moment of their day that they are qualified/entitled/allowed/have the guts to make ethical decisions, it is or would be funny except that they are messing over you. The dominant society has talked only to itself for so long that they have no clue how morally compromised they have become….I too almost always agree with myself….but at least some of the time I realize that is all I am doing…. you deserve better than you are receiving.

  50. Audrey Koh says:

    Thank you, Barbara, for managing to link something meaningful and thought-provoking (the ALS PSA), beautiful (the double rainbow) and funny (the surprised woman image) to the Superbowl (which I did not see much of, so did not know of the PSA).
    Audrey Koh

  51. Chris says:

    Not that I am all comparing the injuries sustained in an automobile accident (our case, and while harrowing and permanent, they ultimately won’t end in death), but the SIX years missed of work (and the ensuing financial carnage/ruin) really is not a topic we (my spouse and I), wish to discuss. I CANNOT stand it when folks ask how are things going? I know they mean well, but after 6 years, you would think they could deduce the answer to be “not well”.

    Anyway, I think the absolute BEST web rant I have ever read on the subject was published by a man who lost his testicles to cancer and can be read here: http://www.markallencam.com/itsnotgonnabeok.html

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