Friday, September 03, 2010

Flabbergasted - Need Your Opinion

I had an odd confrontation, though that may be too strong of a word, with a friend of mine who is a loyal blog reader. She and I don't see each other very often and when we do - she knows pretty much everything that's gone on in my life because she stops in here daily. We ran into each other by chance yesterday afternoon. Joe and I had tea with our neighbour Tess and then went shopping. Joe had to go buy a box, something that didn't interest me, so I told him I was going to go on a 'run' in my power chair.

I headed down the ally that runs behind our apartment building then popped south for a half block and then went over to Yonge Street. I cruised north looking at the store windows. I kept my pace up because I needed to be back in the time it took for Joe to buy a box and then walk home. As I was looking in a window that had been newly dressed, she called my name. We talked briefly. She told me that she had just been diagnosed with Diabetes and said that she'd been meaning to call me, knowing that I've been diabetic for a few years now.

A couple of months ago I had set about the idea that I wanted to reduce my insulin and begin following the doctor's dietary advice a little more rigorously. As a result of this, I've been off insulin for a month and I've cut my need of one of my diabetes' medication in half. My blood sugar is now almost one hundred percent of the time in the normal range. I rushed to tell my friend about this.

Instead of taking the information in the manner I thought she would, she was totally pissed off. She felt that I had kept this information hidden from blog readers and that I had an obligation to document the journey I'd been on with reducing and then eliminating some of the medications I am on for 'the sugar' as my friends from the South call it.

She left the conversation abruptly, very, very angry. I've sent her an email telling her that I was going to write about this but not, of course, mention her name. I wanted to think about her assertion that 'I owed' something to this blog and the readers. I didn't think I'd signed a contract and I didn't think that I gave up the right to privacy. I weigh what I want to tell here and often tell about my observations of the world and my reactions to what I see. This is different than telling what's going on personally in my life.

As a result of this there's lots I don't tell you, lots I don't think it's appropriate to tell you, lots of stuff I simply don't want to tell you. Human beings, I have always believed, have a huge right to privacy, a need for privacy and, I believe, that privacy is necessary for good mental health. This means there must be boundaries. All this went on in my head but then I began wondering what is going on in your heads, reader dears. Do you believe that blog writers have a responsibility to you ... if so what is that responsibility?

I have been painfully aware of the lack of privacy, in almost every aspect of their lives, that people with disabilities who live in systems experience. I have written about, lectured about, wrote programs about the issue of privacy. It is my fundamental belief that we share what we wish to share and we keep private what we wish to keep private. That's true in relationships with co-workers, with spouses, with blog readers. To me ...

Her response flabbergasted me. I felt a little unsure of how to proceed. I hadn't kept the Diabetes information from the blog for any particular reason, maybe I just didn't think it was all that interesting. I thought I'd come to you for your opinions about the issue of blogs, expectations and privacy?

61 comments:

cat-terry said...

If this was in real life, I would frown, shrug and say: "Your blog. Write what you wanna write."

By writing a blog, I really don't think you give up your right to privacy, nor do I think you are obligated to write about particular topics. Like I said, it's your blog.

As for expectations . . . all I expect from blog writers (and this goes for any writer) is honesty and integrity, which you appear to have in bucket loads.

A few other bloggers have pointed out that readers expect them to write about certain things, and get angry when their expectations are fulfilled. I find this really interesting in a way. (Where do readers get the idea that we can demand certain things?) But I guess all writers experience this in some shape or form.

Blog editor said...

Well Dave, it's your blog, so you get to draw all the boundaries, wherever you want them to be. And you get to shift them if you want to too.

It is interesting that others come to feel entitled to know what is going on in our lives, and that *they* get to set the boundaries, especially in this vicarious medium. Reciprocity is important in friendship and other relationships, but this is your blog, not the private meeting of your nearest and dearest.

Isn't that a cardinal feature of privacy - that each of us gets to define it for ourselves (with due regard to the law)?

And I agree that the lives of people with disabilities (perhaps especially those with intellectual disbailities) are subject to much greater scrutiny than most of us would ever tolerate. And sometimes the worst offenders are we parents, usually with good intentions, but it isn't always necessary or even desirable. How much do our parents know about our most private lives? Would they want to?

Too much information? No thanks!

Just keep writing this brilliant blog the way you do.

Jill

Lori said...

Puh-leeeze. I'm flabbergasted too. I feel privileged that you let us in on as many personal subjects as you do. Writing your opinion is extremely personal....in my opinion. You do not owe anybody anything. As cat-terry said, we can have an expectation of honesty and integrity, but we have no business *demanding* that you divulge every detail of your life. If a blog doesn't meet a readers expectations, it's very simple, they can "change the channel".

Keep up the good work, great stories, brilliant insights and personal touches (when you choose). I enjoy your writing even when I don't agree 100% - which is very rare.

The Untoward Lady said...

Of course you don't have the obligation to inform the world every time something happens which affects your abilities!

I think in her mind she saw it as your disabilities lent authority to your writing about disability. I could see how someone could consider a writer having regained ability to change the credibility by which that writer writes about ability. Nonetheless, you still have diabetes, you're still disabled, you still have to manage your health and, quite frankly, you have a certain level of privacy for which you are entitled to.

... that and you pick and choose what is interesting to write about.

Your writing is worthy, credible, and good not because of your disability but because of the wisdom and perspective which you gained through your experience being a person with disabilities. Just because you control one condition does not mean that your perspective magically shifts.

Also, if it makes you feel any better, if you're guilty of doing this then I'm some kind of felon. My tourette's, which, unlike your diabetes, is my main issue right now when it comes to ability ebbs and wanes from virtually nonexistent to utterly incapacitating. I don't have to write a blog post whenever my disability "goes away" just to maintain my credibility and neither do you.

theknapper said...

I agree with those who have posted before me.This is your blog not your diary. I am amazed at how much you share with all of us and I don't think you owe us anything but to share what seems right to share. Your statement at a wksp I attended many years ago that privacy is a mental health issue has stayed with me. I hope you and your friend can figure out what's behind this reaction. I know when I have a big reaction there's another layer to it that's not always obvious to me.

Clay said...

sings -

"It's your thing.
Do what you wanna do."

Just keep on advocating, Dave. ;-)

Jan said...

Dave there are things that you choose to write about and things you choose not too. It is your choice and we the reader get to enjoy your choice. I do not expect every gory detail of your life.
You are doing something well as you have a strong following so I would not worry about what you do not write. Just keep doing what you do well. Thanks

Anonymous said...

Pretty flabbergasted myself, I can't really see how anyone can think any blogger has any obligation to share anything more than they want to, lots of bloggers should probably learn to share less. Hopefully she was just having a bad day.

stephanie said...

okay that's a little over the top. It's not like you had inside info on a terrorist attack about to go down or something and thought you's keep that little tidbit to yourself.

And this is your blog, and 100% your choice what you share and don't share, and HELLO you did tell her in person the good news.

In your friends defense, maybe she is scared about her new diagnosis and just over reacted. When people act out that way there's usually a lot more than meets the eye. maybe there's more going on in her life.

BTW, congrats that you were able to accomplish that! Less meds is always better.

coffeetalk said...

My feeling is the same as the majority, Dave. It's your page, your content. I do, however, know that you will give your friend leeway as she is adjusting to the news that will undoubtedly affect her daily life in a variety of ways. Sometimes we speak hastily through our emotions and often don't do it with grace. I appreciate reading your perspective on an issue that's important in my life, walking beside people affected by disabilities as we all strive for meaning and choice in our live. I'm showing up here every day to see what's on your mind and to allow your perspective to make me think. I'm not holding you accountable to inform me about anything. I will admit, though, if I were told that I need to begin to use a wheelchair that I would probably suddenly be giving more of my attention to the part of your posts that contain that information than I do now. Keep blogging, Dave. You have given me much to think about in the field of work I do as well as my citizenship as a whole. Also, Abe Lincoln knew it and I'm learning it "You can't please all the people all the time". Many thanks.

Anja Merret said...

You presume it's about you. It's about her. It has nothing to do with what you write about in your blog. Find out why SHE was so angry and you will find the answer.

Ann said...

Diabetes is such an insidious disease that what works for one person may not necessarily work for another. The disease has manifestations that may or may not impact an individual.

I believe that how you manage your diabetes is your own business. It is between you and your doctor. It may even in fact be dangerous for others to follow your example unless their doctor agrees.

I think you do a wonderful job in sharing your thoughts! It is not your obligation to tell us everything about yourself, only the things that you wish to share.

Continue your good words!

Kris S. said...

Having read the first response, I won't continue as Cat-Terry captured my sentiments perfectly. It's your blog. YOU decide what to share and what to keep to yourself. Anyone who expects otherwise has been watching too much reality television.

Laurene said...

I agree that it's your blog and you can do what you want with it. Something that occurred to me was that your friend may have considered it a form of communication between friends. But you're writing for your blog readers, not all of whom are your friends. She may have forgotten or not realized that yours is not the simple 'here's what I did today' blog that keeps friends informed.

Andrea S. said...

People who think bloggers somehow suddenly owe the universe the revelation of every personal detail in their daily lives the minute they create a blog have always perplexed me. If you want someone to "owe" you something then you can write a contract and pay them to sign it. Even then, they're still not obligated to sign. And even if they do sign it, they're still entitled to a certain zone of privacy: a contract cannot alter that entitlement because it's just too fundamental: you own your right to privacy just by being human. The Convention on the Rights of Persons with Disabilities (which Canada has ratified) even mentions privacy as a human right.

You don't owe us all the daily details and ups and downs of how you manage your various conditions. You don't even owe us all the details of what your various conditions ARE. No blogger does, and as others here have said it's not a price you need to pay for maintaining your credibility.

Tamara said...

This is "Rolling Around In My Head", not "The Details of My Life With Diabetes".

I know some people do blog about their journey when they receive a diagnosis of some sort, and in that kind of a blog, I could see someone being upset that something as important as getting off insulin was not relayed.

But that just isn't what this blog has been about. It seems to me that it's clear from the title that you're going to write about whatever you're thinking about that day -

catlinye-maker said...

I read your blog regularly and enjoy it greatly and have always assumed from your topics that it was a blog about your life as a disabled activist and educator. I love the glimpses of home life that you allow us, but I don't think you owe us every bit of your life. Especially not medical details which to me are quite private, no matter how interesting I may find them.

My blog is about the best of my life and times and I choose not to share a lot of less upbeat stuff that goes on. That's my prerogative. I think some of my friends think what I detail in my blog is all there is and thus have a beautiful rosy picture of my life. Ok. Wrong, but ok.

I think if you think that what is blogged about by any given person is all there is to them you are guilty of dehumanizing that person. Not unlike the trolls and griefers in online games who hurt "toons" with impunity, forgetting that there's a human being just like them reacting to their actions and words.

Leslie said...

I think Anja pegged it - her anger is probably rooted in her fear about her own illness and perhaps she was looking for a magical answer from you about avoiding meds. Her issue, not yours. That said, I think you are entirely reasonable to choose what you write about it. It's your life and you are entitled to choose what aspects of it you share. I agree with you that disabilities seem to automatically result in some people you have no right to privacy and that's appalling.

Liz said...

Wow. Lots of responses already. I haven't read them all, but, speaking personally, I don't think you owe us anything. I'm here because I choose to read what you choose to post.

On the other hand, you describe this person as "a friend of mine who is a loyal blog reader. She and I don't see each other very often and when we do - she knows pretty much everything that's gone on in my life because she stops in here daily." She probably views herself that way, too -- as someone who knows what's going on with you because she reads your blog. And the medication and diet changes are something 'going on with you' that are not in your blog. Honestly, I think she just had different expectations.

I don't feel that I know the ins and outs of your life just because I read your blog, and so it bothers me NotAtAll to know that there's important-to-you things that you don't discuss. But if I were your friend, staying in touch by reading your blog, I'd be disappointed that I didn't know about something important.

Honestly, though, I think it speaks more to the perils of keeping tabs on friends through their blogs (or facebook or twitter or any primarily-one-way method of communication) more than it speaks to your obligations to your readership.

Miss Ginny Tea said...

I agree that this is your blog, and what you choose to share is up to you. Her reaction is bizarre and kind of stinks of entitlement.

(aside @cat-terry: This is "real life." The Internet is a great accessibility tool for many people with disabilities. Valuing face-to-face communications differently from online ones perpetuates the assumptions about online interaction being less than face-to-face.)

Natalie said...

I consider it an honor to be able to catch a glimpse of your life, your thoughts and your family everyday. You don't HAVE to share anything with us, but I am very glad you do. Congratulations on your well being and reduction in medications. It is a hard fought battle that many are unable to do. If your friend wants how you are she may want to call or send an email. That's what most friends do. Otherwise, I suggest she return to your May 2nd blog....she may find out more about you then she wanted to know. (It made me giggle)

Natalie said...

Oops...it was May 11th! Sorry!

Anonymous said...

The wheeliecrone says -
You owe me nothing.
You write a blog that I find interesting to read.
That's it.
You do not have any responsibility to me.
I do not have any responsibility to you.
That is the reality of the situation.

Laurel said...

I think Anja and coffeetalk made an excellent point. Your friend's upset probably had a lot more to do with her current place in life: she must be feeling disoriented and off-balance with this new diagnosis.

I suppose that a few people might see your experiences with diabetes (a physical concern) linked to your discussions about disability (also physical concerns), but I don't think that was the crux of her issue.

But maybe you can revisit this issue with her when you've both had a little time to process and cool down.

I do certainly agree that any blogger has the right to set any boundaries that s/he wishes.

Moose said...

Hey, Dave, I kinda agree with her, and I see your point of view, too. Please let me explain.

On the one hand I echo what some of your other readers have said: It's YOUR blog. Your site. Your words. YOU and only YOU get to pick and choose what you write about here. You do not have to mention anything you do not want to.

However.

I run a mailing list for people who have diabetes and are not only fat, but size-accepting. We do not believe that weight loss is a requirement for treating diabetes. Some people on the list choose to follow stricter eating regimens than others. We're all different people.

I wrote a long thing about hate and bigotry against diabetics, especially fat diabetics, and then deleted it. 'cause you know, I think I know what is really going on.

Some people, when newly diagnosed with diabetes, go into a panic mode. It's especially a tough diagnosis for people who live alone or who do not understand the disease. You are dependent on your doctor for information -- and sometimes your doctor doesn't even have good information.

I'm sorry, Dave, but I don't think this is about your blog, your privacy, or what you write about.

I think this is about your friend, who is scared of her new disease and over-reacted because of her fears.

I've been running a mailing list for size-accepting diabetics for a long time now. We regularly welcome newbies into the fold. They often come in with misinformation and fear for themselves and their future. It's a scary, scary time.

Give her some time to come to terms with what is right now overwhelming her. You have reached back out to her. In time she may reach back.

ivanova said...

Do what you want, her argument doesn't make sense to me. For that very reason, I think that hearing about the progress you made with diabetes may have hit your friend hard. It may have been a shock to her to find out this is possible, or maybe she's worried about whether or not she can do this. She may feel hurt, like someone should have told her that this can be done. Maybe her doctor should have explained this to her. If it were me, I would try to engage with her on an emotional level and put to one side the blog topic, which I think is a red herring. She may continue to insist that you did something wrong, and if it were me I would try to be "the bigger person" and let it go, knowing that real, legitimate emotional issues underlie what she said. People usually act bonkers for a good reason.

On an unrelated topic, there are 2 blogs I read every day. This is one, and the other is http://www.leewind.org/ a blog about YA literature for LGBT teens. Today's post is a guest post by a teenager explaining why people should stop using the R word. I think you would really enjoy it!

Jeannette said...

I absolutely agree with both Anja and Ann.
Diabetes is a nasty and very tricky disease, and even different brands of insulin work differently for different people.
And your friend is probably still in shock over her own diagnosis.

Blessings on you, Dave, for your blog, for what you share with us. You usually make my day.
Thank you.

Kristin said...

Dave, what you share and what you don't is completely up to you. You don't owe anything to any of us. What you chose to share with us is a gift and I frankly think she had no right to be angry with you.

Trish said...

Let me chime in with agreement that you should consider her emotional state having just received a diagnosis of a serious medical condition.

She is likely overwhelmed with all of the new information she is trying to absorb to figure out the best way to deal with the condition and was probably thrown by the revelation that there is even more information and possible treatments she should consider.

Of course, I don't know her, so I am imagining how I might feel. If you consider her a friend, you could let her know you would be happy to talk with her and share privately information that could help her in coping with and treating the diabetes, whether or not you ever publish it on your blog.

Evelyn said...

Of course you get to write what you want to write it, but, always, in my experience, I learn most, am most deeply moved, am most greatly inspired, when people speak (or write) with clarity, honesty and truth. Social conventions, like privacy, may make you feel good, but will not have the full force impact, at least on me, of expressions that are truthful, fulsome and genuine.

You've quarreled with me before on this issue. I'd still like to know what happened that resulted in your disability. So that: 1) I can recognize and or avoid it happening to me, 2) I'll know what I need to do, get along, adapt if or when it does happen, 3) understand more clearly the impact your disability has on your life, relationships, work. 4) give me a better understanding so I can relate, advocate, and appreciate disabled persons I know or will meet.

I am not eager to invade your privacy, but it does seem odd that being as open as you are about so many things, you choose this to be private about.

liz said...

Wow. I would have had a totally different reaction: one of feeling privileged to know something you haven't shared with the blog-world-at-large.

The reaction really is about her. Sending hugs to you, and more to her. I think she needs them.

Maggie said...

The only obligation I expect you to feel to your blog readers is that you write with integrity.

Some bloggers don't. I don't read them.

While I can appreciate your friend's notion that getting off insulin and reducing other diabetes meds is 'important news,' my first reaction was to wonder which post she would have had you skip to give us this update?

Everything I've read on this blog has been so beautifully timely, so complete in itself, it's hard for me to see where the news of a diabetes-management-plan-in-progress would have taken precedence.

Not that diabetes isn't important. Not that your process, and your writing about it, might not be hugely helpful to someone newly diagnosed. Only that, well, you can't write about everything.

Also I must agree with other commenters who point out that the level of anger suggests it's not about you. I can get mildly irritated with something a friend does, but whenever I'm 'very,very angry' it generally turns out that their action has pushed some internal button on me, and really I'm angry about that, not their action.

I wonder if she didn't ask if there was a way to avoid insulin, and get told something stupid in the way of 'never happen.' or something like that.

Anonymous said...

Hi Dave,
I am a daily reader, very occasional responder, and a one time guest blogger. I agree with what has been said here, BUT, I do want to chime in with what might be at the crux of the problem.

Others have said that the problem lies within your friend, probably because of her new diagnosis. And in part, my guess is that this is probably true. However, I think there is something even more basic than that at play.

Because she is a friend of yours, and also a daily reader, she feels that she knows you well. When she learned of her diagnosis, you were probably one of the first people that she thought of as far as wanting to share her information and to get feedback from, judging by her calling out to you on the street. She probably had it all figured out in her own mind how the exchange would go, and she more than likely thought that she would be talking to someone who was in the same position as herself - still struggling to get a handle on the disease. But she was not prepared for the response she got from you, and that likely caused her to feel betrayed. Inappropriately, yes, but betrayed nonetheless.

At this very emotional and confusing time in her life, she thought she had someone to talk to who would be on her same level, in a sense. And here you showed up and were not that person that she expected.

I see it as a friendship issue, not a blogging issue. I'm sure that she will see the sense in the whole blogging thing once she gets her mind more settled. But in the meantime, it might not hurt to let her know that though you have made a turnaround on your diabetes that you do still understand what she is going through.

Just my opinion.
Janet

Molly said...

It's your blog. and your body. I would never violate you by telling you that you have to share something. You've taught me that too often people think nothing of touching your chair, of pushing you, and you do NOT like it. With good reason! To me, this is similar. Someone telling you what to do. What you have to tell strangers. That's not fair.

Lene Andersen said...

a friend of mine once commented on how open I was on my blog, in that "I can't believe you're telling the Internet all these things about yourself" way. And I reminded him that I'm not. I am very honest about certain things, but never write about many other aspects of my life, some because I don't find them interesting, others because it's not my story to tell and yet others because I don't feel like sharing it with the world. My blog is my space, I choose what to share on it and draw a very impenetrable boundary around a lot of things.

Yes, I have good friends reading the blog and they know about some of the things I don't share in public, but I tell them on the phone or in person. Because my blog, although being my space, is also public. I sort of follow the rule of asking myself if I would feel comfortable standing in front of a room of 1000 people that I don't know and sharing what I'm thinking about writing and if the answer is no, I don't write it.

I do think I owe my readers something. I owe them to be honest in what I do write about, to write ethically, if you will, and to lead with kindness. However, I do not owe my regular readers or the Internet at large full access to my life. I actually don't think I owe anyone full access to my life and I don't think anybody does - yes, there are people with whom we share most of our lives, but because we choose to do so, not because it's a right.

mdmom said...

Your life, your disability, your diagnosis, your blog, your discretion what you share, your choice that you humbly allow others to read and make comments....

You own the choices and entitlements associated with all of the above; NO ONE else can or should ever make that claim.

Anonymous said...

Evelyn, I think it's interesting that you list what you need to know about Dave and yet use a name with no link and provide no, that's none, information about who you are. What gives you the right to give a list of questions, is this an interview, and if so, for what position and what's the salary. I found your note incredibly selfish and immature.

leighbe72 said...

I, too, believe that what you share and when you share it is completely your call. As a person who has worked with people with Developmental Disabilites, I see the complete lack of privacy that you speak of. I can't imagine it in my life and certainly would not expect that you would put everything out there on your blog. It's not fair for people to not have a right to privacy. It is your life....share with us what you will.

AndreaS said...

Evelyn,

I think I see why you feel the way you do, but I respectfully disagree. Yes, I, too, greatly value honesty and integrity. But isn't this kind of openness more valuable when freely given, rather than in a sense of obligation?

You seem to believe (and perhaps I misinterpret, in which case I welcome correction) that privacy is merely something we adhere to out of nothing more than arbitrary social norms. I disagree. Personally, I agree with Dave that the ability to claim certain thoughts, feelings, beliefs, and behaviors as "private" is important to our individual mental health. Different people do seem to have widely varying needs for privacy. And different people also seem to need to draw their boundaries in very different places: some may be very open about their sexual practices but very private about their religious practices while others may be the exact opposite. Just because one person may happen to feel comfortable divulging all the daily details and fluctuations of their personal medical condition doesn't mean that another should feel any obligation to do the same. Adhering to social convention about privacy isn't about "feeling good" it's about showing respect for other people's comfort zone and attempting to not tread into areas that might make another person feel embarrassed or awkward or threatened or just uncomfortable.

Yes, sometimes I am curious about other people's disabilities, what they are, and what caused them, sometimes because I'm curious about whether there might be any similarity between their history and mine, sometimes because I'm curious about certain things I've observed about them. And sometimes I'm curious for some of the same reasons you are curious.

But just because you (or I) might be curious doesn't mean that Dave or any other individual has a personal obligation to hand over all their medical records and pry their brains open so we can read all their thoughts and feelings. If you're genuinely concerned about acquiring a new disability or medical condition and genuinely interested in learning how to prevent them or detect them or take care of yourself afterwards, then train yourself to read medical journals. Or seek out websites and organizations for various specific disabilities and medical conditions. Even some fairly rare, obscure conditions manage sometimes to have a foundation or something in their name that shares at least basic information about the condition, how to recognize it, and how to cope afterwards. Wouldn't these, ultimately, be more helpful than the experiences of a single individual who, even if they actually do share a condition in common with you, may still have very different symptoms and experiences than yours? Or if it is the daily nuances of coping emotionally with a condition and its medical, physical, and social consequences that you're looking for, then seek out blogs written by people who feel more comfortable sharing the kind of details you're looking for. They do exist out there, if you look hard enough.

I don't think it is fair to single out a specific person whose personal need for privacy, and personal definitions of where his boundaries are, obviously differs from yours. I suggest that, rather than pressuring someone to share things they aren't comfortable sharing, it would be a more productive use of your energy to hit blogsearch.google.com to see if you can find what you're looking for elsewhere. (blogsearch.google is a way to use google to search just blogs, skipping other types of websites)

I see no contradiction in his being open in some areas and less open in others ... re-read what I say above about people needing to draw their personal boundaries in different places. Sometimes it's just the way a person is, and if we value them as a person then we will respect that and leave it alone.

Anonymous said...

I apologize for the duplicate posts. It initially seemed as though it wasn't posting! Dave, please do feel free to delete the duplicate as I don't know how to do it myself

Rachel Cohen-Rottenberg said...

Dave, I completely agree with what everyone else is saying and can only add the following perspective:

People in public positions often come up against pressure to compromise their privacy and their needs, because others often project their needs onto us. My husband and I both worked as lay rabbis for several years, and we moved on from that role because the pressure to be and to do what other people needed, instead of doing service with respect for own needs, was immense. The level of anger directed at us when we didn't fulfill the expectations of others shook us to the core. We finally had one too many conversations like the one you just encountered, and we decided that we could serve in other ways.

In your long life of service, it sounds like you've done a great job of taking care of yourself. Don't stop now! I think the best response to your friend's demand is "That won't work for me." And then, just keep on rolling and taking care of yourself.

Dave Hingsburger said...

Anonymous Above, It's ok to disagree here - both with me and with each other. I just ask that it be respectful. Evelyn is allowed to have her opinion and I think it's brave to buck the trend. I don't want to stifle lively debate but it would be nice if we were all 'nice' when we did it.

Shan said...

There's naught queer as folk, Dave.

PJM said...

You make me laugh, you make me cry, you are better than Cats! However I do not need to know every details of your medical issues. Just as I do not know why you use a chair for mobility, I do not know your blood sugar levels.

moplans said...

First of all I think any time a friend reacts in this way you want to have a discussion about what you both are feeling. This friend seems hurt and I think you want to address that.
I do not think you owe your blog readers, or anyone for that matter, any information that you do not want to share, or in this case didn't even realise we might be interested in.

Congrats though Dave. That is great news about 'the sugars"

moplans said...

PS My friends actually get upset if I blog about something I have not told them first.

Rachel Cohen-Rottenberg said...

Evelyn,

I don't fault you for asking these questions; I tend to want to know people's stories--not to violate their privacy, but because people are pretty much endlessly interesting to me, whether disabled or not. I'd much rather hear someone's story than read anyone's theory of anything.

But those of us who share our lives publicly have to set limits about what we share, even if those limits don't seem logical to others, and being disabled tends to increase that necessity by several orders of magnitude. I share a lot about my life in my writing and blogging, and I do it because the value of my work tends to increase the more honest I can be. However, I have to be careful to stay away from "self-revelation fatigue"--not just because I write about my life, but because I have to do so much explaining every day about what I need regarding my disabilities.

Most people don't need to explain about their auditory processing, or their sensory sensitivities, or how their neurological systems work, just to be able to get a quiet table in a restaurant or communicate by text in order to save valuable energy. I've learned to keep it as brief as I can as I go about my life, but I still feel that I have to give up more privacy than I'd like. Plus, nothing about my disabilities stays constant from day to day (anymore than a typical person's body stays constant from day to day), so what I need today might not be what I need tomorrow, and having to clarify *that* to people who put me in a diagnostic box and think they understand me only chips away at my privacy even more. It can be very tiring.

So I instinctually make adjustments about not sharing certain things--and they're often things that aren't even all that big. I don't hold back because I'm afraid of revealing them. I hold back in order to create some sort of balance in my life, because I need that as much as anyone else.

Hope that makes sense.

Gilly said...

I cant say anymore than the other posters have said - Its your blog Dave, and you should put in it only what you want to put into it.
Congrats on the les meds! I wish I could take less meds, but I think I would fall apart at the seams ifIdid!
Anyway I love your blog. Keepit up,Dave!

Evelyn said...

There a cruel irony is there not in Anonymous criticizing me for using my real name to post a comment. I did not know it was a requirement to provide a link, and I wouldn't know how to do it anyway. Secondly, I did not ask questions. I constructed declarative sentences about about me. How I feel when hearing others speak out about their experiences and situations. It makes me wonder about people like Anonymous who play the role of public scold. Why do I imagine, when not at their keyboards they sit at home sucking on lemons?

CAM said...

If I were you I would call my friend and see if she is ok. Seems she is not in a good place.

I am sure in calmer days she would not react in the same way.

Of Course there is no requirement for you to share anything.

I hope your friend feels better soon.

Anonymous said...

I think it is possible that your friend believes that the glimpses you allow are the whole picture. Perhaps she thought she knew all there was to know about you and was surprised to find she was incorrect. It sounds like she was offended that she didn't know all there was to know.
That being said, regardless of what she did or didn't believe, she reacted irrationally to news that should have been encouraging to her. And for anyone to expect you to owe it to your readers to share all the intimate details of your life should really think about how they would feel if the roles were reversed.

Belinda said...

You don't owe readers your life or your privacy. You give generously every day: of your time, your wisdom, humour, honesty,insight and passion. We are recipients of this bounty, and are grateful for this connection with the thoughts you choose to share.

That, come to think about it, is what this place is--a corner where you share some of your thoughts, which are well worth reading. It isn't a place where we expect to "know" you personally.

Courtney said...

If you didn't think it was interesting to tell us or didn't want to tell us, then you shouldn't have to.

Anonymous said...

Dave, it is your blog, and you can write anything you choose. I enjoy and appreciate your writing, and glad you share so much of your life, but you set your own limits.

That said, I have diabetes and am a wheelchair user, and would be interested in anything you choose to share about it. I think there might be more interest than you expect, in the way you manage your diabetes.

But there are other voices for diabetes... and only yours for many of the things you write about.

It is always your decision. You don't "owe" us anything!

Sharon

Brenda said...

The internet, and blogs in particular, are odd things. They often give us the sense that we know the people we interact with more fully than we do. Since we live in the same city, and since I have my coffee with you every morning, there is that sense of pseudo-friendship there. However, if I were to see you in the street, and rush in with a hug and a hearty "Hi, Dave!", you'd probably be looking for the nearest policeman to haul off the unidentified crazy lady. (Rest assured, if we ever were to meet in person, the worst you would suffer would be a hesitant "Hello, I read your blog", and a tentative handshake.) What we sense as real coming from the screen, and what is actually real, can be, and usually are, very different things. To further complicate this, I believe there is a little bit of the voyeur in all of us. Curiosity is human nature. And there are very few things that can fuel that 'need to know' drive better than someone providing little tidbits about their life, served up daily, without us even having to ask. BUT...all that said, there is absolutely no aspect of your life, personal or professional, about which we have the right to demand answers. Judging from the 51-and-counting comments here, most people agree with me. I would even take it a step further and say that friendships, even deeply personal and abiding friendships, do not give anyone the right to demand private information. Oh, we can ask, we can show interest and concern, but I don't believe there is any place for 'demanding' in a truly loving and respectful friendship. If I love someone as a friend, and they wish to keep certain details to themselves, isn't my duty as a good friend to respect and support that? I would expect no less in return. I suspect, and I hope, that by now your friend as had some time to think and to realize that she reacted negatively to something that should have been good news. (Congrats, BTW!) As others have said, there's likely more to this story than you - or perhaps even she - realized at first glance. And when you and she eventually work this out, you can fill us all in on what was really going on. Or not. That's totally up to you. :)

Susan said...

Wow, you can't do anything right in the blogging world, hey Dave? If you tell people too much (their opinion of "too much") someone gets pissed off. If you keep something back, someone else gets pissed off...

You have been generous, generous, generous (to a fault, maybe) with your blog-ollowers (blog followers). I for one am grateful for what you share. I chew the meat, and there's lots and lots of meat, and spit out the bones (and fat, as it were! :) ) But I applaud you in your efforts to stay sane and well balanced by being very deliberate about what you give of yourself. You owe us NOTHING, and have given us SO MUCH. We are not paying to subscribe to your posts. Expecting anything from you comes, I would suspect, from a sense of entitlement which is just not reasonable.

Keep on keeping what you need to keep and keep on giving what you choose to give. You won't lose me as a blog-ollower over that one...

Norah said...

I don't think, on a blog such as this, that you owe people anything at all. And definitely no one else gets to decide what is (too) private or unsuitable or when you write about what.

I get the feeling some people think everyone holds the same topics as dear, private, intimate, or public. They don't. I'm open on my blog on things that a lot of people would categorise as 'shockingly intimate', but I simply don't. These things could be trivial to me. Then there may be things I'd never post, that other people don't understand why I don't post them because they don't see the big deal, or because they think those things are too important not to post. I'd hope people get over it, really. Making demands about topics on someone's private blog is rude, at the very least. If they do ask, any reason I give them, or none at all, as to why I don't post about certain things, should be good enough.

With your friend though, with a new diagnosis that might be scary and all, it's probably a lot more complicated than someone just feeling entitled to stuff for whatever reasons they have. Also, you already said this is a long time friend, so I'd guess it's a very different matter than if it was a barely-known commenter (it would be for me, anyway). I dunno, if it were me and they told me later that they'd just been easily upset because of the whole situation, or something, then I'd probably just consider it a closed matter and all is well again.

rickismom said...

I know that I have entire aspects of my life that I do not write about on MY blog, as it would hurt the guilty ones involved.....

Jeanne said...

Dave,

You have a right to decide what to write about on your own blog. That's a given.

It sounds like your friend may be in some sort of state of fear following her diagnosis. Perhaps she didn't mean to come across the way she did.

In any event, it's your blog. No one has a right to demand what you should write about.

Jeanne

Anonymous said...

Hi Dave,
Some may wonder if diabetes is just not disabling enough to be included in your blog... Right to privacy is valid, and a sufficient justification on its own. Another reason for not posting indivual health practices is liability. Anything that could be construed as medical advice is a lawsuit waiting to happen. Your blog is amazing and promotes understanding and consideration. Please continue.

Anonymous said...

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