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I have spent a lot of my adult life trying to change the conversation around health issues. The first step in that process is to look at the meaning of words in common use. If those words don’t convey what we think they do, it’s important to rethink them, and to use other words. A great example is the word “prevention” in the context of breast cancer. Since there is no guaranteed way to keep from developing breast cancer, anything offered as doing that or promising that outcome is, to say the least, inaccurate. It would be more accurate to talk about “risk reduction.”
Now that I have ALS — a devastating, relentless and pernicious disease that is robbing me of my ability walk and talk (before it robs me of all my other functions) — other words and phrases capture my attention.
My very first blog — https://barbarabrenner.net/?p=20 — tackled one of these phrases: “How Are You?” While I won’t rehash what I said there, I do want to talk about other things that are part of common parlance in English, but that maybe wouldn’t be if we thought more about what they mean. My examples today are the phrases “I’m dying to . . .,” and “Be well.”
Are You Really Dying to Do Anything?
Wanting to be erudite about the phrase “I’m dying to . . .,” I sought Google’s help in discovering the source of the phrase. Unfortunately, this is one occasion where a Google search failed me, but I did find lots of examples of the use of the phrase. Here are few choice examples:
— “I’m dying to travel the world”
— “I’m dying to hear what you have to say”
— “I’m dying to be beautiful”
Wikepedia describes the phrase as hyperbole. I think that’s an understatement. If you look at these phrases you will notice that the goals set out will be impossible to achieve if the speaker is dead. As a dear friend said to me, why would the deepest expression about longing be about death and not about living? So why don’t we say, instead, “I’m living to . . .”
I realize that because I know that I am dying (not tomorrow, but sooner than I thought I would be and sooner than I lot of people I know are likely to be) and know what will kill me, I may be a little oversensitive to the phrase “I’m dying to do . . . .” But really folks, is there anything so important to you that you want to die to achieve it? And even if there are one or two things that meet that threshold, it can’t be that most things do.
How about, “I can’t wait to . . . ,” or “I’m glad to be alive so that I can . . .” as better phrasing? Next time someone says to you “I’m dying to . . . ,” ask them what they really mean.
Be Well With an Incurable Disease?
And then there are the related phrases that we American English speakers seem to toss off at the drop of a hat: “be well,” and “I hope you are well.” I can’t tell you the number of emails I get from people who know my situation that start or end with “I hope this message finds you well,” or “be well.” They are matched in number by the number of times I part company with friends who say, “Be well.”
In my better moods, I usually respond to the “I hope you are well” inquiry with something like, “I’m as well as I can be given that I have an incurable disease,” followed by the winking emoticon ;-).
But I am much happier when people hope I’m having a good day (a phrase that, long ago, seemed like the epitome of bland saccharin, but now seems to be the preferred alternative for me) or urge me to take care (which I do) rather than wishing me something I will never experience again.
I understand that most people are not faced at this moment with an incurable and fatal illness, and that often “I hope you are well” or “be well” are perfectly appropriate wishes to extend to folks. But, if you know something about someone that makes these phrases inapt, please think twice before you say them.
© Barbara A. Brenner 2011
Love this! Take care 😉
I think we can all learn something from my close family member, who invariably just tells it like it is. Rather than bothering with the usual fake platitudes like “you look great”, she just says “you look like sh!t”. And you know what? She’s usually right on the money. And as for the “be well” phrase….like it’s in our control…if only! 😉
I, for one, have more to be thankful for than I can name. Reading your blog and having shared moments with you in my life is VERY high up on the list. Thank you for all your pearls of wisdom. Deep love and regards, susan
As usual you put thoughts in writing that many of us have lurking in the recesses of our own thoughts. You have a gift that we are the better for your taking the time to share.
I find those that tell me,”you look good,” with what I often take as, “I expected someone like you should look far worse, ” maybe that can be inferred as positive at least that is how I take it with the thought, “I’ll try to look more terminal on our next meeting!” I’m a people pleaser so I’ll do my best not to disappoint them. NOT!
Please continue to pen the thinking we often share without your ability to identify much less tap out into cyberspace.
I also get that “you look good” thing, and my usual response is somewhere between “what did you expect?” and “this is how it looks.
I hope today is a good one for you.
Barbara (aka BBZinger)
I thoroughly enjoyed Pink Ribbon Inc. Took me some finagling but finally found your blog. Thank you for your eloquence and for reminding me to avoid pink yoplait and pink walks with pink pompoms. I attended the premiere and my favorite line from that film quotes you. “Write a cheque”—-I roared laughing. Hope tomorrow is a good day.
Barb, don’t you think many people who tell you “be well”, really mean, “I hope it is going as well as possible for you”, and that you should factor in their good intentions?…
I don’t question people’s intentions when they say things like “be well,” to me, it’s their language with which I take issue. I think we can do better.
I used to have a button which said “Have a good day, unless you’ve made other plans”. So I tend to avoid that phrase. I think I have fallen into saying “be well” – and it is meant as a wish or a prayer or hope. Not as in “you will be healed of this illness, will no longer be terminal etc”, but as in “what I wish for the person I’m talking to is a sense of wellness or wholeness”. I know that when I’m personally having a hard time, almost nothing anyone says will feel right to me, so I take your words to heart and will attmept to become more conscious of when I and how I say things.
English is not a good language for communication…too bad it is the only one I have….a
Barb, as a woman also facing dying early from ALS (I am 56), I have a different take on “be well”. I can no longer be defined by what I can DO, which leaves what I AM. I try every day to be well emotionally and spiritually. I am under no delusion about physically, and my efforts don’t always succeed, but I try. I don’t think the wish to “be well” is incompatible with a terminal disease.
As someone who, as far as I know, is not yet terminally ill, I find Barbara’s blog enlightening no matter what she’s writing about. This made me think about how difficult it is for the healthy to know what to say and what not to say to friends who are no longer well and who face more and more difficult and scary times. We want to help if we can, and not to give pain, but it is a guessing game at best. What bothers one might be welcome by another (as evidenced by other comments on this thread.) More, please – tell us more. I am paying attention.
“Savings” rather than “cuts” is another abuse of language which we see every day in austerity Britain.
I’m certain you touched a nerve for many people with this one, Barb.
Never am I so aware of my language than when I’m in an infusion room. It seems to be a place where common phrases can feel like daggers.
I also did a search on “dying to” and never came up with anything. How the word “dying” replaced the word “longing” is a mystery to me. And that “be well” sign off that has become so common always sounds like a weird demand to me As if there is some control involved. It isn’t at all the same as “wishing you well”. To anyone struggling with health issues it has all charm of a face slap.
So I’ll sign off wishing you much love, comfort, and peace.
Thank you Barbara for how you keep speaking up, teaching us, and calling us into deeper levels of mindful living; speech, relationship with ourselves, you, and others. Thank you, your the best!
This month’s blog subject takes me back to “sensitivity training” at work regarding cultural diversity. We become more aware of the significance when we have our own personal experiences.
Now imagine this conversation that I witnessed within the last 6-8 weeks. At an ALS fundraising dinner event a woman whose brother passed away from ALS and the family since has created a productive non-profit in support of ALS patients & families approaches a man in a power wheelchair. Her first question in a very happy voice “Do you have ALS?” He & I exchange glances and I know where he’s going with his reply of “No” (of course he is thinking a few expletives to accompany the “no”, but refrains from stating those). Unfortunately someone else interjected “yes”. I say unfortunately because I would really have wanted to see the direction of the conversation travel a little bit. The insensitivity did not stop there. The woman now informs the man with a very chipper happy voice how lucky he is to have been chosen to have ALS.
Need I say more? There are a multitude of “imagines” that can be discussed especially knowing the woman’s personal experience with ALS and heading up a non-profit.
I am still shaking my head!!
Barbara, We invite you and all your readers to join us in our activist approach to ALS.
Here below is the on line Petition created last week by the ALS-Treat us Now! Steering committee asking for treatment now.
Our Petition calls for a compassionate use approach, or other methods for patients to obtain life prolonging treatments, even when efficacy may still await large population validation.
The Petition was referenced in one or more write in comments read during the recent Ask The Experts MND/ALS conference session in Australia.
Members of the Petition Steering committee would like to discuss the Petition’s request with you and other readers of your blog who want to help. . My email is firstname.lastname@example.org, ……cell 252-767-2942
Our Petition seeks no more or no less than the Quote from the ALS Association TREAT ALS brochure:
“Now is the time to capitalize on this progress and translate laboratory observations into effective therapeutics for ALS patients. That is the goal of TREAT ALS.”
We also seek your help with directing the petition’s message to ALS Society/Organization Executives, MND Society members, Researchers, Doctors, Academics, and others should all be made aware of the heartfelt request written in the petition.
Hopefully our collevtive activism will help patients gain early access to treatment….any main stream treatment. Patients have little to lose. … Hope for treatment is what keeps many patients entering Drug Trials to have a chance at prolonging life.
We feel the ALS community should have the same benefit of early access as the HIV population received. Early access helped many HIV victims survive for many years….we need the same level of attention.
Thank you for your help.
I respect your perspective, yet holistically speaking I believe wellness can be relative and I recommend that every person utilizes the wellness concept daily. I believe that so many people with ALS are passive about wellness. I dedicate every day to wellness and I intend to scientifically demonstrate that there are things PALS may do to have greater wellness measurable through physical, mental, emotional and spiritual aspects.
I see so many people with ALS give up on achieving greater wellness and in some cases I have explored in depth, there is an angry self destructive quality, like they either want a cure or they will eat a junk food diet, resent ALS and other choices which we know make people in general less well. I take responsibility to be as well as I can and you strike me as somebody who might do the same. You have a good point as well, but I am concerned about throwing out the wellness concept just because somebody has ALS. Great blog website!