What Medigap Changes Mean For Elders
Too Old to Fall

A Question of Organ Recitals

Friends

A few days ago in a comment, a reader made an approving reference to a friend who refused to take part in groups of old people who indulge in “organ recitals” - that supposedly clever but disparaging phrase for discussion of medical problems.

(It is always applied to elders. Young people who talk about their health are never accused of being boring but we'll save discussion of that kind of ageism for another day.)

Certainly we have all known people who carry on at mind-numbing length or go through the details of their surgery at inappropriate moments – Thanksgiving dinner comes to mind. But there is another side to this issue.

A couple of weeks ago, on a post here in which Crabby Old Lady was writing about her cancer, reader Rina Rosselson who blogs at age, ageing and feature films, left this note in the comments:

”Thanks for your crabby post. At 82 I still have not heard what my friends had been going through when struck by a serious illness. There is such reluctance and fear to communicate and share these feelings. Your posts make it easier to talk about these changes.”

Rina is right. As much as some organ recitals can be excessive, plenty of other people go too far in their silence about serious medical issues. It helped me a lot, eased my mind to a degree, especially when I was first diagnosed, that people I know – in “real life” and on this blog – passed on what they had experienced during cancer treatment.

Conversation

Even if it would not closely match my experience, it helped me understand how difficult or easy my treatment might be and, most important, that those people had got through it - a real question when facing so much that is frightening and new.

Here is another thing that happened – to me, anyway – after the surgery and during recovery from it; even as I desperately wanted to not become a “professional patient” and wanted to hang on to my pre-diagnosis life, cancer is insidious in at least one additional way beyond the physical attack on the body:

Over time, and not all that long a period, it creeps into every cell of your brain. Trying to read a newspaper or a book? The mind strays to cancer. Watching a movie on TV? Next thing you know you're wondering if the chemo will actually work, and you've lost the thread of the film story.

Even washing dishes or making the bed, you suddenly worry that you forgot to take your pre-meal pill at lunch.

But perhaps the worst? Those ubiquitous commercials for various cancer treatment centers scattered in cities around the U.S. that always imply that they can cure cancer.

They enrage me. As much as I suspect a generally positive attitude is helpful in treating cancer, I resent being lied to as though I'm incompetent. And although, if you listen carefully to every word, they don't promise a cure, few of us pay that kind of close attention and it sounds like that's what they are saying.

Either way, there you go down the cancer rabbit hole again.

One thing I've noticed is that too often when I've told people about my diagnosis, they don't know what to say – they are stunned - understandable - and I think part of that is our general reluctance to discuss such things at all.

So I'm with Rina. I think discussing details of our serious diseases and conditions (appropriately, for sure) is a big help in reducing fear in everyone involved – friends and family as well as patients. Talking about these dramatic changes, when they hit us, with loved ones goes a long way to finding a way to live with them.

I am reminded of the large number of doctors and nurses I have been dealing with through these months. They answer every question with the truth, even the hard truths, with compassion, understanding and a good deal of humor. The rest of us should be doing that too.

Friends Having Lunch

Comments

I think it is a matter of tact and timing. I'm glad you are sharing your journey with us. Organ recitals become tedious when presented to an unwilling, captive audience.

When a senior lunch-time friend told me he'd been hospitalized and had bowel obstruction, (and diverticulitis) I was able to share with him that Alan Alda had had to have surgery for something similar. It seemed to help my friend, who didn't get the shock value that he probably had expected in my response. And he was grateful to know that a famous person had experienced similar circumstances. Yes, a bit of sharing does give us useful information, but we have to avoid advice giving based on personal experiences!

"Organ recital" is a putdown, people who think that should probably refrain from mentioning it. Saying stuff like that may make us feel momentarily superior, but it does not reflect well on our personal character. I am as guilty as the next person of such thoughts and it is always instructive to have it pointed out.

What an unkind, needless remark. Sometimes listening to someone tell about their medical problems is therapeutic both for the teller and the listener.

Absolutely spot on as usual Ronni - it is important to take the secrecy,fear and in some cases shame out of serious illnesses. When I told an elderly friend that I was going to have a mastectomy she tried to reassure me by saying "It's alright I won't tell anyone"! She could not understand that I felt quite alright about telling people and in fact felt that it was important that people knew how commonplace cancer is as we get older - and it can be treated. I think the key word in your post was "appropriately" - health problems and operations shouldn't become the centre of every casual conversation - but sharing and being open can only be helpful in dispelling fears and letting others know they are not alone in dealing with their problems.

Friends of mine in whose wedding I was an attendant, have declared—and it was his idea which she thinks is so cute: "When we get together we need to talk about the happy things in life, not about our health issues."

We don't get together more than once a year and I never tell them anything beyond an answer to a question regarding how I am. I say only I am doing well. It isn't a lie, but any problem I have had or am having would not be appreciated for what it is.

It is interesting to me that he has begun to talk of his back hurting after a long drive. She has had a couple falls and has shared the details of her recovery. They seem to not notice that I say nothing about my ailments. I am doing well, with complications off and on and with the emotional/mental dealing with the reality of no cure and always threatening treatment and its attending possible side-effects. That dealing is not always there, as you say, Ronni. The reality is there to be entered allowing a niggling for whatever time you can let it be faced, but it is amazing how it can be forgotten for lengths of time as you are busy with what has to be done just to keep the house clean, (I don't do that very well.) clean, feed and clothe and nurture yourself.

Living alone makes it necessary to find at least one other to talk to about what you are experiencing and any need you might have.

Luckily I live in a community of neighbors who ask and tell what is happening as we meet walking, at club-house gatherings without our information being overly boring or burdensome to anyone.

Thank you, Ronni, for relating your realistic approach to life.


I agree with you!

I have started pointing out how common our diagnoses of cancer have become. My hope being people will recognize the need for increased research on causes and improved treatment. The need isn't necessarily accepted if the problems are kept secret.

I can't imagine being diagnosed with a serious condition, and not talking about it at least a little. I appreciate your accounts of treatment, because they are factual and basically hopeful. Perhaps, we should all be more accepting when others with serious conditions feel the need to talk about their conditions.

I am remembering how we young mothers talked among ourselves about our child birth experiences. We had undergone an immemse change in our lives and talking about it to others helped us put our individual experience into perspective.

Same thing here. When we undergo tremendous change, it is crazy to not talk about it.

I would be far more inclined to avoid a person who characterized other people's health issues as "organ recitals" than the people who are doing the talking. Some of the most important things I've learned have come from genuinely listening to people and hearing their fears and hopes. If I can't take the time or have the patience to listen to another human being, I wouldn't think much of myself.

Maybe there's a fine line between narcissism and being interested in one's own life experience -- which most definitely will include illness for most everyone. As you have so eloquently said, curiosity is the lifesaver. We're here in these strange bodies on this strange planet, and incarnation is a wild and fascinating ride, including but not limited to anxiety and fear. It's when some people talk about their illness in the mode of myopic self-obsession (as opposed to? relating their experience to that of others and to the universal human condition? being connected rather than isolated by it?) that it becomes tiresome.

I would hate that a friend of mine would go through a serious (even not-so-serious) health problem, and not feel that they could talk with me about it. If I care for someone, then I don't only care when they are healthy or not worried about anything. It's kind of like a marriage, for better or for worse. You stick by your friends & help them any way you can. If they want to talk about what they are going through, then I want to listen. I want to be there for them. That's what friends do.
And for S. C. Jones, if your friends aren't there for you, then I hope you have other friends that are. There are too many people who only care about their own lives. I have a "work" friend who calls me several times a month since we have retired. She launches into a running commentary about her life & her kids & grandkids, but only occasionally at the end of our (so-called) conversation will ask how I'm doing. Some people just seem to focused on what is happening to them, and feel that surely everyone else must be also. I rarely say much, because I don't think she cares & is just waiting for me to finish so she can continue on. Some days I don't answer her call.

I'm a big believer in support groups and do realize they are not for everyone. Over 25 years ago, I was diagnosed with breast cancer and we had moved to an area that had limited resources of support. I started and facilitated my own by placing an ad in the local newspaper. I always had the support of loved ones and close friends but, they didn't walk in my shoes. Being with others who did and who never tired of hearing any individuals journey, was a positive and healing proactive time for me. Today, support groups for every and anything can be found. I have been there and never tire when someone wants to talk of their situation. Many did for me ...a little empathy and kindness goes a long way for many.

There are most definitely appropriate and inappropriate times to discuss the details of one's personal illness or infirmity. Many people would rather not hear such things. It makes them uncomfortable; they don't want to be privy to such intimate details. That's why I started a second blog for all my cancer notes, progress reports, etc. Folks who wanted to read it, could. Those not interested or uncomfortable with the subject could stick to my regular blog.

Here at the ALF, discussing one's illnesses, deformities, medical procedures, pills, and preparations is considered a recreational activity. And, while there are some folks who wallow in their desire to let everyone know every detail of their medical history, most of us only discuss our ailments if asked directly about them.
I. although I don't find any pleasure in doing so, will gladly tell anybody who is interested about my condition in an effort to provide accurate first hand information about something they may be going through. It's all a matter of knowing when informing become just plain kvetching.

Another thoughtful post, Ronni. The kind all of us so appreciate from you. But I must register a gentle objection to the new use of stock photos. They make your posts look like so many others, which is not what all of us love about your always special ones.

I have never commented before but I "lurk" for every posting. I am living with multiple types of blood cancers for which treatments are relatively easy (phototherapy every other week, phlebotomy every 6 weeks). I have also been through a rare form of eye cancer for which I had radiation, spinal chemo and "regular" chemo. Through it all (and with a husband very ill with Parkinson's) I talked about it with friends and family. It just made it more bearable. Ronnie you are an inspiration to those who have been through treatment and to those who may some day need treatment. Keep it up and Happy and HEALTHY New Year.

My life is so limited now that I wouldn't have anything to talk about if I didn't have health issues.

I had been taught to reply when asked how are you, "Fine thank you". Now I tell them that I'm okay except for having a migraine. If they ask, I assume they want to know.

I fond it very therapeutic to talk about my last illness and it helps so much to get it off of my chest, so to speak.

I well remember how often I used to hear those disparaging "organ recital" putdowns--and you're right that they were in a universally ageist context. The implied meaning seemed to be that if you "cheered up" (ie, shut up totally and acted young) nothing scary or sad would ever happen.

How ridiculous! I wouldn't share the details of my struggles with younger relatives or disinterested strangers, but other people who have the same problem have been invaluable to me via Internet bulletin boards. Then I--and they--want to know EVERY detail because we're right there ourselves.

We'd all like medical professionals to be more empathetic and informative, but the nature of the problem is that it's the least likely thing to EVER happen to medical professionals. They know from textbooks, but not from life, and it's not their fault. But other sufferers? I'm all ears. Bring it on.

My battle with pulmonary hypertension leaves me with such a plethora of miseries. It would be so much worse without a support group of fellow sufferers ... new friends who know just how I feel. You are so right about the need to tell someone how difficult it can be to get through some of the worst days. I won't get back to my old "normal" which was dealing with the pain and fatigue that is there from fibromyalgia and myofacial pain syndrome. I have a new "normal" now and I have learned to accept it and maintain happiness and joy in life in my limited lifestyle. My writing has suffered from it though, especially my blog. Maybe I should revive that old scourge of enjoyment and be more candid. Now my diary, that is where I write but no one reads it. I think it is wonderful you have been open and informative through your cancer. I get strength from my fellow seniors who face health issues on a daily basis. Even though it sometimes feels like it, we are not our Diseases. We are people first and we are stronger than we ever thought we would have to be. Thank you, Ronni, for years of uplifting, informative blogs.

I am a new subscriber to TIME GOES BY and learned a great deal about your cancer treatment and cancer in general. Think it takes courage, bravery and fortitude to disclose to others your experiences. By doing so you make it easier for "we seniors" to share our thoughts and feelings about other things both pleasant and unpleasant that might be going on in our own lives.

This is a very thoughtful post with many excellent comments, e.g., Jean's comment: It's kind of like a marriage, for better or worse.

A related topic is injuries which require immediate care. Recently, I injured my left eye while helping my husband clear out our local storage unit. The following morning, my eye hurt a lot, and I couldn't see clearly if I shut my right eye.

My husband immediately drove me to a local Emergency Room. (We joked that it was payback because I'd driven him to the same ER when he cut his hand badly some years ago.)

Injuries can be both painful and alarming, because the person with the injury doesn't know whether she or he will fully recover.

Okay. On my previous comment the word scourge was supposed to be"scourge". It changes the whole sentence. I have to laugh at the jokes my phone likes to play sometimes.

No! Two times ina row is not a laughing matter. The word is source!!!

Good luck if you try to use Medicare or Medicaid at those various cancer treatment centers. Just a warning...

I think one of the most challenging aspects of life is that it is both wildly magical and deeply disturbing. Joy and sorrow. "Both" rather than "this or that." I keep trying to remind myself of this and seek balance when I can.

I'm in a different situation. I have been diagnosed with a disease that could be deadly, but I've decided to not get treatment. I have done a lot of research, and that is my decision. I've told my friends about the disease and the decision, and they're the ones who continue to bring it up, telling me they know so-and-so, who did well after treatment, shouldn't I see some more doctors, etc. I know they care, but I'm an adult, and I've asked them to please accept my decision. I now wish I hadn't told anyone.

Gay, Very interesting. It's all about what you can afford. I'm for single-payer health insurance.
Ronnie, thank you for posting all your experiences with this cancer and being so open about the daily regimen you have to go through. I am not a stranger to having a family member die from cancer. My niece, Breast Cancer at 35. My Dad, Lung Cancer at 57. My Mom, Colon Cancer at 60. None of these cancers were found early. No one in my family talked much about their health issues till it was too late. I wonder how I have survived this long. But I'm here and certainly willing to listen. Also glad you persisted with your symptoms.

One more thing, I agree your blog looks a bit weird with the photos. Although I use them on my blog, I don't think you need them.

Love and Light

Joyce, depending on the situation, I would probably be with you. No one (including me) ever knows exactly what they would do if/when confronted with a life-threatening condition, but I would need to weigh carefully the risks and benefits of treatment v. palliative care. At 80 Y/O I'm not as worried about death as a event as I am about how I will get there.

I've found myself thinking about the same thing lately. In my case, it's how much to tell my adult kids. They ask, they listen, but I worry about worrying them. So I find myself emphasizing the positive.

The truth is that not a whole lot is known about interstitial lung disease, and anyway it's a grab-bag diagnosis that includes a lot of different causes. So this could be what ends up killing me, or it could settle down into a limiting but stable condition, or it could even get better. I have thought quite a lot about the first possibility, but if I talk about it with them, I will only frighten them. And yet... if it turns out to be what happens, someday they will wonder, won't they? how it felt, for me. Was I scared? And if not, why not?

Maybe I am in denial. Maybe I just don't have enough sense to be scared! But it doesn't feel like that, to me, from the inside.

So far, I've chosen to talk mostly about the other two possibilities. I do answer their questions if they ask. If they are secretly thinking, "Uh-oh, that's mom trying to be cheerful and pretend everything's all right," and still feel terrible on my behalf (because they know me pretty well)... there's not much I can do about it.

While I surely don't want to initiate a big organ recital anywhere, I do currently yearn to find someone with whom I can talk about several recent shocking catastrophes which have left me with almost unbearable pain at times. I experience too many moments of anxiety re: the here and now, and I find it so hard not to obsess about what surprises might very well await me in future days.

I have a need to find a kind listening ear (for ever so brief of time) so I might air out some of my stress. In return, I'd be so glad to hear of the other's struggles..........and know that
I am not alone in these "Golden Years".

Hey Gal, I'm a Tennessean, a 72 y/0 retired lawyer (a prosecutor). I go to PORTLAND tomorrow to visit my son for 10 days, leaving there the 30th - and a great fan of your blog and of you. I would be honored to do a chemo run with you, or bring in food, or get you for lunch and a visit. Will have use of a car, etc. Call me at 615-587-2038 if I can do that for you. Roe Ellen Coleman

Ronni: Your life-threatening diagnosis. Your coming to grips with it. Getting prepared for surgery. Those who love and will help you. Your responses (soon after) to the surgery. Recovery. Physical Therapy. Returning to a semblance of 'normal' life. Chemo. Each is a compelling story of it's own. What a journey! Thank you for letting us come with you, - - well in the background at least. It may be an 'organ recital', but it's one we've chosen to attend. In tuxes and formal gowns. I could hit the 'delete' button. But I won't. Thanx.

Health issues are a big part of what we experience as we age. The people who don't want to hear about them are probably frightened by such talk, and they more than likely have not experienced a health problem yet.

I like real- always have. Real people talk about what is real in their lives, and hopefully they have real friends who will listen even if the discussion is frightening.

Continue on, Ronnie.

Thanks, Bruce, for your amusing take on life with old age ailments at the ALF. I commend you for providing a sympathetic ear for those who need it and for your patience with those who make you krazy with their kvetching.

And Edna, you're wrong. It IS a laughing matter, and we need to laugh more and more as we get older. I laughed, so it must be funny. All of us have been sabotaged by autocorrect many times. I turned mine off and rely now on old-fashioned proofreading. Sometimes I catch my errors, sometimes I don't. But at least I have only myself to blame (or commend).

As for sharing and over-sharing, I would do much more of the latter except that if I do, I bore myself, and it takes time away from the limited time I have to talk about politics and books and other people and life in general.

What a fascinating and thought-provoking blog and comments!

The first person who used the term "organ recitals" in conversation with me was my mother. She had recently had to give up driving and then independent living due to progressive loss of vision due to Macular Degeneration. After living at an ALF for a while, the term in question came up in relating her experiences living with a lot of old people with disabilities. One of her rules of living for herself was "never be a crabby old person" . That must be why she never complained or "crabbed" about how devastating her loss of vision and, therefore her independence, must have been.

After the ALF got too expensive, she lived with me and my brother alternately. I now regret very much not asking her about her vision loss experience and giving her a chance to vent if she needed too. Also, it would have been instructive to me, as I am now walking in her moccasins.

I'm all for support groups, sharing circles or whatever one wants to call them. A friend of mine and I have created a group for folks in our town who are struggling with vision loss. Here they can learn from each other ways to cope and mourn together our losses with mutual sympathy and understanding.

Ronni, thanks for raising my awareness of the ageist nature of the phrase "organ recitals". I'm struggling a bit with discovering my inherent prejudices and I guess I've been guilty of
ageist thinking. Does today's post mean it's OK to talk about one's physical struggles by name in the comments?

I'm like Pat (a few comments up) I need someone to talk to about my "new normal".

Tarzana...
Of course, you can talk about your physical struggles in the comments. What no one can do on health issues is recommend or suggest treatments, drugs, procedures, etc. "What has worked for me..." is a good phrase to remember and use.

None of us can judge for another person how much pain or nausea they can stand. Just as no one can judge whether a person is willing to go through intense misery in order to try to live as long as they possibly can.

Just as I believe we should have the choice to say, "Enough! I can't take any more of this! I want out!"

There are no guarantees yet in regard to some diseases. And I do not judge people who have carefully considered their options and have decided that they will not go through treatment.

Any more than I would judge someone who will do anything, clutch at any straw to try to stay alive, even a few hours longer.

It helps some people to talk to someone. Other people keep their pain and anxiety to themselves, some because they aren't sure that they want you to know their private thoughts...

Talking about how we feel surely isn't age-related as I reflect on all the years of my life. I recall beginning in my early adult years hearing from others or expressing myself how I was feeling. With some who I knew were genuinely interested I would be straight forward, others asking "How are you?" usually heard from me just "I'm fine" once I picked up on the fact it was simply a meaningless greeting from them.

In fact, there was a joke that went around that when someone said "I'm fine" that what "fine" really meant was they were f----- up, insecure, neurotic and emotional -- likely were experiencing crazy-making times since there could be lots of distress in life besides physical diseases and illnesses. The point is, i concur sharing with one another information about our ailments has never been limited to older people despite such a stereotypical ageist view.

We just have to exercise some judgment about who we talk to about what, where and when -- which is pretty much true of everything else going on in our lives. Think your photos demonstrate interesting graphic images of individuals, groups in classic conversational settings whatever the source.

I have a small group of friends who all have some dehibilating disease. We meet for lunch a couple of times a month and I bring the cannabis infused capsules, topical oils, cookies or brownies, RSO, and my bong. I have an OMMP card. (Oregon Medical Marijuana Program) and the knowledge and ability to make these things at home.
We have a nice lunch and talk about what ails us. We all have some sort of complaint-chronic pain and arthritis for me, MS, Parkinson's, epilepsy etc. and all have spoken to their doctors about using cannabis as part of their medication.
Talking to others who aren't critical or judgmental, who are interested in how your life is, hot you feel, what you're doing is so helpful. Much better than complaining to my daughter, who I live with.
Then we put on 50-60s rock music and dance together (we call it the old lady crip step). We smoke weed, laugh like loons and I always leave feeling better!
Most of these ladies hadn't used cannabis before this, unlike me, I've self -medicated with it since 1960. I was a loner and introvert in college and it helped me relax and become more outgoing.
Without this group to talk to I'd be very alone with my aches and pains.
Talking really helps.

Wow, these comments could make up a book!

My good friend has colon cancer and is having a tough time with chemo. I am a colon cancer survivor. I take my cues from her- when she wants to talk, I listen. When she just wants to go to a movie and forget about cancer for a while, we go to a movie.

It helped me to join an on-line support group when I was doing chemo and radiation. Just be sure you have a knowledgable moderator!

All I can say is thank god for my husband of 53 years who has been right at my side through the ordeals (and joys!) of the months since my diagnosis in January and the chemo I have gone through. I'm now on palliative and doing way, way better than anyone had anticipated. Having to paddle my own canoe at this stage, with no chance of a cure, would be unendurable . I have to have steadfast person I can count on.
And I have encountered mostly kindness and understanding, as well, from family, friends, neighbors and health workers. They seem to be OK with me being being an old woman with cancer and still regard me as human, ready for whatever I can get out of life, still.

Great blog and comments, Ronni. In one of my fantasy moments, I imagine being King of the World: my first act is to outlaw all pharmaceutical and cancer cure ads on television.

Love this blog and all the comments. I think it's VERY important to share with others all our fears and concerns about growing older, whether it's financial or health or any other concern. Friends and family can be of great help, but there's nothing like a group who are experiencing some of this stuff. I wish meetup groups had some geared for older adults or hospitals offering discussion groups about health issues. There always seems to be grief groups, of whixbut not much else

I get a full dose of straight medical talk weekly, from my friends at " The Ranch." and I am interested.

Why? Turns out the best life advice comes from those at least twenty years my senior.

Hey, it's not their first prom!

I welcome straight talk about their life experiences, even though it may be scary.

Yesterday was my first day back at my volunteer busing table job at "The Ranch."

Hugs all around.

It was an emotional moment seeing my friends after a month traveling in Europe.

Residents entered the dining room. Some used walkers or canes.

There are a few new residents.

But where is S?

"She is in the hospital."

"B is moving to an assisted living home, because she keeps taking all her medication at the same time. She forgets everything."

It's like musical chairs. You get to know a lovely person, next time you find out she or he was rushed to the hospital.

Maybe they return, maybe not.

After someone goes missing, I continue to look at their chair, like it's their chair forever. That missing person had a life. The chair might be taken over by someone new, but I can still picture the first person who sat in that chair at that table.

Why?

Because I began volunteering at "The Ranch" the day it opened.

N was 100 years old when she left the building for the last time. I would see her in the local mall. A tough woman, living alone above a drug store, she fought moving into to The Ranch until she couldn't handle the stairs any more.

Over in the corner, B is smiling at me. I call her "Baker B." She makes the most delicious pies, but only for those she likes. B baked me a pie because my husband handed her his seat on the local bus.

Baker B continues to take the bus, even though she has a million medical issues.

My husband gave B his seat and BING Baker B put me on her pie list.

M needs a heart operation. She's 90.

D hates the food.

"I threw my whole plate in the garbage yesterday. They say our lunch is worth $12.50 a plate, but it's not even worth $5.00.

"too much fat, salt and sugar."

"D, please speak up. You have a voice. Use it. You can't be evicted for complaining about the food."

"Yeah, I will."

Back to my blog after jet lag abates.

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