go to the site and read it. It's short, well written, and to the point. If you don't read it in conjunction with mine, then you'll miss important things.
But... I don't agree with it all; the "never, ever" – which is why I've written this, just as I wrote an earlier blog entry inspired by what another article said and challenging a number of views about what not to say. My take on it got picked up and circulated world-wide.
http://deniswright.blogspot.com/p/whats-new.html segment of the blog.
I don't expect you to know or remember this web address but don't get uppity if I direct you there.
I'm not as sensitive about this as Deborah obviously is, but as she says, no way do I want to be an object of pity either.
It's well meant, and a huge compliment in one way, but some have no idea the way it makes me feel if I am going downhill - which, bit by bit, I am, if we go by the objective evidence. Are you expecting me to conquer this thing that no-one in the world has overcome before? Pardon me if I "fail". I'll do better next time if I can. I'll try harder, I promise.
If it's not meant sincerely, or as a weak attempt to ginger an ill person up when they feel rotten, it's worse than saying nothing about how they look.
But here Deborah and I might disagree, but for one good reason in my case - I do actually look better in the face than for years, with more sleep and the right disposition to accept what's happening. I know people are telling the truth when they say that to me; they aren't simply being inanely hearty. So I don't get offended by that. I believe them! So far anyway.
But if X says that, X has seen me only sitting in a comfortable chair. Watch me get about. The image might collapse.
No-one's ever said that to me, but if they are a good enough friend to be able to say it in a purposeful way, I wouldn't mind... at least I don't think so. Maybe I'll wait and see.
Come to think of it, what good purpose would it serve? If I were kidding myself and thought I looked terrific, how would it help to be told otherwise? If it's true and I do look bad, I daresay I'll already know. Safest is, just don't say that at all.
It's an expression of concern, and well meant, but yes, it can put the pressure on. Deborah sums it up beautifully in her response. Don't miss it.
Again, I understand completely that people say this because they're reassuring us that they care, and they do. But what helps is to suggest things exactly like Deborah mentions; or, as many people do, just turn up with them. If you're not sure, ring first, like Chrissie: "I just baked an extra <xxxx> pie - can I drop it round?"
You bet you can, you beautiful person....
Really? Here I was, wasting all this angst for nothing!
Funnily enough, Deborah mentioned how she was reacting to the prospect of losing her hair. I knew I had enough vanity to care, but I didn't realise just how badly I would. I'm a bloke. Bald is beautiful. It is, on some people, but when it falls out in clumps, that feels different to making some sort of choice about what you do as the hairline recedes naturally. My hair's come back, more or less. As long as you view it from the right angle! But for a woman, who rarely expects to lose her hair in her lifetime, it must be worse.
I am also vain about the fact that in two years of steroids, I've put on 13 kgs. Vain and concerned that it is a lot harder to get about carrying that extra weight on buckling knees, and a bloody sight more dangerous when I fall.
This sort of question doesn't bother me, even though I can't answer that specific one in a meaningful way to anyone who's never been through it. If people are curious, that's OK. They can ask me anything. Sometimes I can answer in a way that might make sense. Naturally I reserve the right not to answer if it's too personal.
Deborah says she wants only to chat about other stuff. Well, that's fine, but sometimes I go through an entire chat and the person gets up to go, and they haven't asked me how I'm feeling. Don't avoid the subject altogether as if it's totally taboo.
There are sometimes experiences I've had that I do want to share, so my visitor understands where I'm at. I don't want to bore people for the entire time with the intimate details of my condition, but 50-50 would be nice. I don't need to be entertained. I've got more entertainment available than you can poke a stick at.
It's worth reading very carefully what Deborah wrote here. Be sure you are clear in your motives for doing so and don't come - ever - if you are doing it out of a sense of duty. Write a note instead.
Being visited is a big thing for me – even more so if people have travelled long distances to do so. That can put incredible pressure on me.
People are. I am. All the family are. It's superfluous but it often slips out because it's how you feel. You're my friend. If you aren't upset, then it would be strange. "How can I live without you" is all about you. It's not fair to hit me with guilt about your loss when I'm gone. You might be amazed at how quickly you'll adapt and move on. At least I hope you've got the sense to and not to dwell on what can't be, because I don't dwell on it more than I need to when people I care about die. Sure, you better miss me for a little while, or I'll be offended, but don't wallow in self-pity. Get on with living.
Lastly - and I've said this elsewhere - take on board the most important paragraph of the whole thing. The last one. I'll repeat two sentences here:
Deborah's admitted it, and I have to too. This is all I'll say about it: if you love/care for me, then it doesn't matter what "terrible" thing you might say or have said. But these things matter hugely to others in circumstances like mine, so it's surely worth knowing what they may think and feel.
Next time I'll write on some worse things that people have said – but this time, including some that can only be thought of as pure arrogance and ignorance.
A few things come to mind to add to your list of what not to say/do to an ill friend.ReplyDelete
Don't "blame" the sick person for their illness e.g. my David (living with secondary progressive multiple sclerosis) has been told by close family member that he has MS because of "unresolved emotional issues"! If only he would go get counselling, do some yoga, so some self-help workshops etc etc, his MS would be cured. Grrrrr! (NB: I have never known anyone in my life as kind, brilliant, loving, functional and integrated as Dave!)
Also: When well-meaning friends (usually acqaintances)come with biodynamic, organic, hand-harvested whatever potions and pills in a bottle - or articles on a cure in India or Mexico using beestings or gold injections (or whatever) at enormous cost that would bankrupt us to seek out. And as if we were not researching and educating ourselves constantly, as well as seeking and receiving the best medical care possible.
Also: When friends come to visit and spend the whole time talking about their life and problems and never once ask any questions of Dave about his life (which is full and interesting) nor about how he is feeling....as if they are there only to entertain and inform this wise, intelligent and insightful man. They are missing out on so much!
Also: When able-bodied people come and stay for hours/days/meals and don't ask what needs to be done around the place (I sure could do with some help emptying the heavy bags of chook feed into bins, thank you so much!)
In summary - all people need to do is want to understand how it is for the sick person and to find out by asking true questions.
I haven't ever written this down before now. Sorry for using your blog to get it off my chest.
NOOOO!! Not at all - absolutely no need to apologise. On the contrary, thank you very much. These are exactly the truly frustrating sorts of things that I am going to talk about in Part 2, and you've saved me some trouble by showing us that this isn't just me.Delete
I have to say that most of my friends are wonderfully considerate, and the one danger in all of this is their thinking "Is he talking about me? Have I accidentally done this?" It's highly unlikely that I am talking about you, and you wouldn't get invited back if I were. I cannot honestly think of anyone who's visited in ages who is in this category, so don't worry!
Ros' Dave here - awake now from listening to her fingers rapidly rattling across the keyboard! She should have a blog too.ReplyDelete
First thing to say is that I am not chronically or critically ill. I am confronted by a kind of "outer circle" of reactions that people may have. Very much along the lines of what Ros and you and Deborah have said and especially the homeopath/beesting/snakeoil stream.
At the same time, me being me, there is the light side. The deep gratitude I feel for people who've taken the time to come and see me. The wonderful list of medications that a friend's 86 year old mother researched when she heard he was visiting someone with MS - one of which was actually news and possibly helpful. The Scrabble buddies who always relocate the weekly game to the Rehab ward when I'm there.
Dave: you were writing at the same time as I was. Excellent comments. I won't write more but I appreciate the input deeply.Delete
Just one other thing that you've implied. Don't forget the primary carer. Much sympathy goes to the patient or whatever you want to call us. But if you want to see courage, look at the carer. They take the brunt of everything except being on the inside of the illness itself.
They're the heroes in my book.
When I said that I wasn't "chronically ill"(I am) - what I meant was, I am not, most of the time, acutely ill even though I am permanently in a wheelchair etc etc.Delete
Carers rock! The inappropriate things people say are often said to the carer as much as to the patient. It is easy to have this conversation as if all interaction between friends/visitors is with the person with the illness. The loving carer (not talking about paid carers here) is as much part of the picture as the "patient".
The "how can I help?" question is much one for the carer than for the patient, but is not often asked.
Just to clarify completely, when I said 'you implied', I was saying you also were thinking of the carer, because I know you are thinking along just the same lines as I. I sometimes fear, as you do, that the carer doesn't always get the attention they deserve.Delete
This is a most insightful post Denis.ReplyDelete
Experiencing my own father's terminal illness taught me a lot about how friends and family handle these delicate and painful situations. On the whole folk are trying to show compassion but on occasion royally put their hoof in it. My Dad could not tolerate pity and to the end only wanted happy cheerful conversation and this is what we strove to provide. As far as my family were concerned Dad/Grandad had earned the right to dictate the course he was most comfortable with.
So very true. Thanks, Annie. All these shared experiences, even when they contradict each other, help create awareness.Delete
I think it reinforces the messages that I find coming through increasingly – that every circumstance is different, that people's reactions are always with good intent even though they may be or seem woefully misguided, and that it's not fair to be too harsh on well-intentioned gaffes.
For those of us who've never had cancer (and this group is fast decreasing in size), I recommend the movie "Wit: It appears to be a matter of life and death." I also recommend it to people who are friends with someone who has cancer (and this group is fast increasing in size). I definitely do NOT recommend it for people who have cancer, especially aggressive cancer, unless you are a mascochist.ReplyDelete
This movie documents the experience of an academic woman who is diagnosed with aggressive and advanced ovarian cancer and who opts for experimental and severe cancer treatment. Emma Thompson plays the main role and is absolutely superb, quoting John Donne on death throughout her decline. It's worth watching just for her performance.
The characters are unfortunately stereotypical -- the soulless doctors who see the patient as a machine to experiment on; the uneducated, unsophisticated nurse with a heart of gold; and even the academic main character who is all brain and no heart. However, the movie is a real "tear jerker". We watched it last night, and I thought, how appropriate for this conversation on Denis' blog -- something that could give people insight into the experience of cancer and the needs of a cancer patient without having to go there.
The movie is based on the play of the same name by Margaret Edison.
Thanks, Joan - that seems a terrific film, and I say 'seems' because I haven't seen it, and maybe never will, though I suspect it would be harsher for women to take [because of its location] than someone with my form of cancer. Emma Thompson is wonderful and will/would undoubtedly break your heart with her performance if her others are to go by.Delete
This topic has given me so much food for thought and I really have to keep adjusting my own perspective to accommodate things that hadn't occurred to me, or my ideas on were half baked.
Life. A movable feast, huh? Death, it seems is also, however wrong 'feast' may seem as an image.
I agree - don't think I would say any of these. But it CAN be difficult to know what to say. I'd add to these: "you have to stay positive, and fight!"ReplyDelete
Thanks, Jackie – now that's an interesting addition because different people would interpret it in different ways.Delete
Me, I'd have no problem with it and just take it as an expression of your concern and hopes for the best possible outcome for me.
But others I know would not like it. When people have such an illness where there are things beyond their control, they may be prone to misinterpretation of intent. Some would say hypersensitive, but it's likely they don't have the illness.
So, saying 'You must stay positive' for some would be like an accusation that they were being negative, or at least, not positive enough, and needed to buck up and do better. Likewise, with 'fight!' They may think, 'You're telling me I am weak and haven't been trying.'
That would be the last message on your mind to get across, but it could – because the person faces things they have no control over.
So what would I suggest instead? It's much easier to talk about what you shouldn't say, and it depends enormously on the person you're talking to and the nature of their illness. You should try to understand what's possible for them and focus on that only. People are not always positive because they've been fighting a long hard battle that they will eventually lose.
So maybe, if you don't have their or a similar illness you say, 'It's impossible for me to really know what you're going through, but you're constantly in my thoughts and I am with you all the way.' Or whatever you can truthfully say along those lines, of course.
Thanks again, Jackie – you gave me the perfect opportunity to show how a sincere, well-meant thought can in some circumstances get turned right on its backside.
Thanks Denis, that's really helpful. My dad has a terminal illness and recently his sister also - she passed away 3 weeks ago. I called her daughter when my aunt was in hospital and at the beginning I felt useless not knowing what to say, but I found it easier as the conversation went on, to say (I think?) the " right" things.Delete
I'm almost coming to the view that there's no need for me to do Part 2 of this, because I believe strongly that whatever is said in the spirit of loving concern by visitors springs from the same source no matter what anyone thinks that source is – but as it matters hugely to others and there are some people around who need to be pulled up, I will finish it.Delete
You have had and continue to have a hard row to hoe, Jackie. My best wishes are with you in this and with your Dad, who will be coming to grips with it daily from the inside.
There is a kind of peace that comes with accepting your own mortality. It's one of the few advantages of getting older and/or accepting terminal illness for what it is.
People blithely say that they know they, like all humans, are going to die. But few people have any idea what they are talking about until they've faced it squarely by being forced to confront it. Mea culpa till almost three years ago.
The younger and healthier you are, the less reason you have to do that. You think it's on your radar but it's not. And nor should it be.