It seems to me that we go through life asking and giving polite but meaningless greetings to everyone we meet, even those close to us. But when I get asked 'How are you?', I don't always feel like answering with something positive (or even something polite). For it seems to me that the person asking has by-passed my disability and is treating me like any other able-bodied person.
Setting aside the fact that I'm in a wheelchair, and a power chair at that, they ignore the fact that I'm limited in where I can go, how I can get there and what I can do. They probably don't realize that I'm in constant pain, such that riding down the sidewalk hurts. It would never cross their mind that I might be discouraged, or feeling badly about my lost ability to travel. Or that I might simply be having a bad day.
A few times recently I'll admit I've been really tempted to answer 'Well, I'm having a sh&$!y day thanks, spending all day in this f&%$@*!g wheelchair, and to tell the truth it's a sh)(*&y life altogether!'
Thankfully I haven't stooped to that level of depravity yet. but I have found myself answering 'Well, I'm surviving', which isn't a very inspiring answer at all, though perhaps it tells them where I'm at. For much of my life I've made a point of answering 'I'm great!', which seems more positive at least.
This is multiplied when you're talking to someone close to you who knows quite well what you're going through and yet asks the same old question, 'How are you?' With them you can be more honest and tell them how tough life is, or what a difficult time it is for you just now.
Of course my current cynicism may all just reflect being stuck inside for the winter, made worse this year by even things like church being cancelled due to the pandemic.
I do think there are ways the question could be asked more honestly. Even asking 'How are you today?' implies that you know the bigger picture, but you can honestly ask how is it just now. This works well for people you see fairly regularly. Asking 'What's new?' is similar and opens the door to a sensible answer.
However, the fact that I might be tempted to give an impolite answer to the question in the first place raises the important question of how you do stay positive in the face of life-changing injuries.
If there's one big surprise in the past three years, it has been how my brain immediately adapted to my new situation. Right from the beginning I have thought not about what I've lost but about how to adapt to my new situation. My 'self' doesn't reside in my whole body, it resides somewhere in my brain (or maybe my soul). I can be happy or sad, discouraged or successful regardless of the fact that most of my body no longer works. In that context I can honestly answer I'm great' unless I'm having one of those really bad moments.
I'm not sure that family caregivers, spouses or adult children, react the same way. Their life has been limited entirely through something that's happened to someone else. They have no control over it, they just have to give care. And therefore I think it's more stressful for family caregivers than for the disabled or ill family member themselves.
All this is to say that I need to measure my days based on my own definition of great, even if it's very different from what you might consider great.
Boy, I sure wonder what someone might say if you really answered that question honestly. It seems weird to think of asking someone in a wheelchair how they are, really. Usually nobody expects anything other than "fine, thank you." I only recently learned that you are in constant pain and thought that being paralyzed meant freedom from pain. How wrong thinking that was. :-(
ReplyDeleteIt's an interesting discourse that you raise here. There are all kinds of inane comments that grease the wheels of every day life and pass for social intercourse. When I greet an able-bodied person by saying, "How are you?" I expect an answer such as "Fine, thank you" or "Not too bad". I don't anticipate that he or she will say, "Well my knee hurts, and lately I have been having pains in my side." There is a difference between genuine concern and socialization. While sympathizing fully with your situation, I wonder what you might have said to a person faced with your challenges before you had to deal with them yourself.
ReplyDeleteI think there is an uncomfortableness in people when meeting someone with special needs whether mental or physical. Not knowing what to say and certainly not wanting to say the wrong thing they may come forth with their familiar standard greeting of, 'how are you?' or a lighter 'how's it going eh?. There's a moment of difficulty or awkwardness on both sides. By writing this you have informed anyone reading this of the situation and even though I may have said 'how are you' to someone in your situation I do not have to worry now about saying it again if so confronted. You have taught me a lesson and I thank you for that.
ReplyDeleteIn my mind you have every right to say exactly how you're doing as indelicately as you please. As you say it's often something one says to another and there is no expectation that the answer will be anything that fine or okay or not so bad. But just as no one can know what is happening in another person's mind, they also can't feel what is going on in your body so telling them how it really is could be a reminder of the difficulties you face.
ReplyDeleteTake care.
Perhaps being perfectly honest with people would help them to understand your situation a LITTLE better, although none of us can fully understand how other people's lives are. If you're having a rotten day other people should know that; it doesn't mean you have to be obnoxious about it, just forthright. I had a good friend, a physician, that had Parkinson's disease, when asked how he was, he would always reply "Deteriorating". For he was, in fact, deteriorating and that continued until the disease finally proved fatal.
ReplyDeleteWhen I was disabled, used a walking stick for years, could not drive and at one stage could not get dressed by myself, my answer was " Not Bad" until one day Hugh said " What do you mean by not bad? Is it bad, really bad or partly good" Then I realised my reply did not say how I was at all. We had a very good friend who had an accident when a tree fell on him, instant paraplegia, he can use his arms, has a car modified with hand controls, but is in a wheelchair all the time.But, like you, he always looked for the good every day. None of us really understand your limitations, the level of pain, the reliance on others to do so much, but tour words, photos, attitude and research speak volumes of how you have tackled this huge adjustment to a different way of life.And I am so sure that you have always been aware of others with disabilities, huge sadness and so much more.Down here, a tragic boating accident has seen one family of five lose a child, another in critical condition after their small boat tipped over on a bar where the river went out into the sea. So their lives have changed in a different way, but you know so well the immense grief they will be going through. To end this long comment, Happy Easter to you both, rejoice in every day, and let that spring sunshine warm your souls , hearts and bodies.
ReplyDeleteThank you for speaking about your experience in the wheelchair. I didn’t realize there was so much pain which came with paralysis. It must be exhausting to deal with all the time.
ReplyDeleteThere are two men who wheel along the boardwalk any day they can. Thank you for opening my eyes to what life may be like for them too.
This is an eye-opening post for me too. What flies out of our mouths is almost a robotic question "how are you?" I've sometimes wondered when I ask it of an able-bodied and able-minded person just what I would say if they were totally honest in their response. I know I will heed this 'lesson' and try to do better. I do have to say that it isn't just reserved for disabled or ailing people. Bill and I had to word carefully, the beginning of our phone call to our dear friend who just lost his wife, his whole world. We knew 'how he was' so had to be sure not to ask that STUPID query.
ReplyDeleteThank you for drawing this to our attention, F.G.
Happy Easter to both of you! 🐇
How are you today works for me. I am continually asking my husband how he is...for him that can change from minute to minute. Most of the time I can tell...but when I am unsure I ask:)
ReplyDeleteI figured out some time ago that this question was more like "hello" or "I acknowledge you," so I never think about it anymore. Perhaps it really means something like "how are you in this moment as compared to other moments." See? You've got me speculating after I said that I don't think about it anymore. :) I can see how it could be rather off-putting to someone in your condition, which sounds quite grievous.
ReplyDeleteFor some years now when anyone asks how I am I answer “still alive!” But with a smile so they don’t perhaps realise how I feel that I might not be. I was very ill in 17 following a small stroke. We never found out what the problem was. Possibly a virus. But it really knocked the stuffing out of me and I went from full time work to three half days and that was a struggle, and I’ve never really got better. Then last year I had an operation to close a hole in my heart (probably the cause of lifelong ill health that caused most of my relations to sneer at me most of my life) which went well but unfortunately I managed to develop a blood clot on my lung and the 3 months course of anticoagulant medication really made me feel ghastly. So I am well aware that most people who ask how you are aren’t really looking for an answer. And that’s a shame. We should be more aware of how the people we meet are feeling. And we should genuinely care what response we get. Only we don’t do we?
ReplyDeleteAnyway, we got married yesterday! And we are both absolutely shattered with the exhausting stress of have 6 guests! I do hope you are having a good day today. I do feel for you. And I do so enjoy reading your posts. Is your pain clinic helping? I do hope so. X
Wow! You certainly got us all thinking. I found your post an eye-opener and likewise the comments. I'm left wondering what is the right thing to say. How about when you take leave of someone. To say "Have a good day" which is the usual saying is sort of dumb if the person is obviously not going to have one. Life is complicated.
ReplyDeleteBTW, my response to How are you? is normally "I can't complain" mainly because I'm aware of all the people who have much more to deal with than I do.
Hi Stew, you're by no means the first person to ask these difficult questions and after twenty-odd years of working with people with various abilities and disabilities it's something I've had to give a lot of thought to. There is no simple answer that I can give in a brief comment on a blog, but remember you live in a very civilised country in comparatively enlightened times: there are people around who you can have this conversation with, either specialists in counselling in this area or perhaps others in your neighbourhood have similar issues to contend with. You have shown by publishing this article that you are open to discussing these matters, so, if you haven't already done so, I hope you'll consider making these contacts as I'm sure they'll be of some help.
ReplyDeleteAn elderly gentleman I used to drink with in my local pub (and by "elderly" I mean about the same age as we are now!) always used to reply when asked how he was, "Worse than I'd hoped, but better than I'd feared!".
Take care.