I don't really know Dave, except through this list, but have to say (and perhaps for that very reason) that I agree with him and support his message.
Setting aside the issue of security of his house, after it was broadcast to the neighborhood that he would be away, individuals have different thresholds of personal privacy. I'm sure Dave was in contact with the friends and others who he wished to inform about his surgery, and from whom he wished to receive support. Had he wished to communicate with half of online-University City, I'm sure he would have requested that one of his friends or acquaintances post a message on his behalf.
There are people who participate on this list with whom I have varying levels of friendship or acquaintanceship. I would be FURIOUS with any of them who presumed to post information about me that I had chosen to share with them, but not with the entire UC list community.
And please remember that this is NOT a private conversation between friends. This is a very public forum, with publicly-searchable archives.
Kathleen
-----Original Message-----
From: [EMAIL PROTECTED]
To: [EMAIL PROTECTED]; [EMAIL PROTECTED]
Sent: 11/3/2004 11:51 AM
Subject: RE: [UC] Dave Axler, local resident had heart surgery
I agree with Paul. Dave's post made me sad. Dave, you could have just
made your point more concisely and said a few positive words about the
idea that people care about you. The poster is probably crying right
now. :( Anyway, hope you are recovering well.
ELISABETH DUBIN
Hillier ARCHITECTURE
One South Penn Square, Philadelphia, PA 19107-3502 | T 215 636-9999 | F
215 636-9989 | hillier.com
-----Original Message-----
From: [EMAIL PROTECTED]
[mailto:[EMAIL PROTECTED]] On Behalf Of [EMAIL PROTECTED]
Sent: Wednesday, November 03, 2004 9:08 AM
To: [EMAIL PROTECTED]
Subject: Re: [UC] Dave Axler, local resident had heart surgery
An interesting post for a number of reasons. This really shows
another angle on well wishing, being supportive and caring. While all
the rationales for criticism of the posted news were laid out, and I
appreciate the chance to be sensitized, it seems harsh to be so
dismissive of the unknown poster's intent. Wasn't he trying to be
helpful in letting those who are concerned about you know that you are
doing well? Apparently he screwed up, but is your response really
completely on target regardless of good intentions?
Although you don't say so, there is a strong suggestion that you'd
rather be left alone. To avoid causing all these problems for a
patient, should we stand back and wait? Send a card maybe, but don't
call and definitely don't visit. I'll call you or invite you if I want
to put up with the hassle. Do most people who have been hospitalized
feel that way? Do any patients welcome the healing power of friends and
love over the hassle of not being able to rest more?
Finally, why do all these concerns not apply if you just had a baby
or are dying? Does the new mother, with her wholly dependent baby, not
need the rest of the guy after surgery? Are burglars more respectful of
the dying, not to mention the identity thieves?
In a message dated 11/3/2004 12:22:39 AM Eastern Standard Time,
[EMAIL PROTECTED] writes:
>On September 13th, the following two paragraphs were posted on the UC
list:
>
>>At the PSFS meeting this weekend, it was announced that long-time SF
>>fan and UnivCity resident Dave Axler had bypass surgery recently.
>>Since I've run into many local residents who knew Dave, but did not
>>know about this, here's some info.
>>
>>"According to a posting on smofs*, he's at Beth Israel Deaconess
>>Hospital in
>Boston Massachusetts,
>>and he's recovering well from bypass surgery. He'll be staying at the
>hospital a few more days, and >then staying at an adjacent hotel for
>about a week while his doctors monitor his condition before he >returns
home."
>
>*[For those who don't know, "smofs" is a small-circulation moderated
>discussion list for the organizers of science fiction conventions]
>
>I've been debating about the appropriate response to this posting,
>which had me as its subject. To be blunt, it should never have been
>made. Regardless of the intentions of the poster, the end result was
>that it caused me some problems that should have never occurred, and
>added new, unnecessary stress to an experience that was already
extremely stressful.
>
>I considered just responding to the poster, off-list. But, after
>discussing this with a number of close friends who have gone through
>similar hospital experiences, it's become clear that some folks out
>there just don't have a clue how to deal with other peoples' medical
>situations. So, in the hopes that I can spare someone else in the
>future a bit of the aggravation that I experienced, I'm going to
>respond here on the list. (It's a somewhat belated response, but that
>won't affect its accuracy.)
>
>Let me start with some basics. While these are generalizations, my
>conversations with others suggest that they're true for pretty much any
>extended hospital stay, with two possible exceptions: women delivering
>babies (where congratulatory phone calls are rather common) and those
>patients who go into the hospital expecting to die.
>
>To start with, one of the first things that hospitals require when you
>arrive and "check in" is to provide them with the name and phone of a
>contact person. Primarily, that is to ensure that there is someone who
>can make critical decisions while you're unconscious or otherwise
>incapacitated. In addition, that person is also the patient's
>spokesperson. If someone calls the hospital and asks for a patient at a
>time when the patient is in the operating theatre, the ICU, or
>otherwise incommunicado, the hospital can direct the caller to the
spokesperson.
>
>[In my particular case, because I was in an out-of-town hospital, I
>actually had more than one contact person. There was one relative who
>was local to the hospital, a second -- my brother -- who had the
>medical decision-making job, and a small collective here in Philly that
>was taking care of my cats and house during my absence.]
>
>Typically, the contact person also takes on the job of notifying
>selected friends and family about the patient's status. The key word
there is "selected".
>Unless one is a major public figure (e.g., Bill Clinton, who had his
>bypass two days before mine), there really is no need for everyone in
>the world to get regular updates. My contact people worked together to
>keep my family and close personal friends updated on my status and
>recovery via email. The list of people they notified was something they
>reviewed with me prior to surgery. It deliberately did not include any
>of the local Philly mailing lists such as this one, but did include
>some limited-circulation mailing lists in the science fiction world,
>simply because I had gone directly from an sf convention to the
>hospital, and many of my friends who were in attendance were thus
already aware of the overall situation.
>
>Second generalization: A patient, after surgery, has only one real
>responsibility: getting better. While the definition of "better" may
>vary, the basics are the same: Get as much sleep as possible, avoid
>stress, avoid pain, take your meds, and so on. Everything else is
>secondary. Anything from the external universe that works against this
goal is to be avoided.
>
>Third generalization: The reason that patients generally go from the
>operating theatre to an ICU, not the public wards of the hospital, is
>so that they will be in a protected environment while the initial
>healing takes place. I'm not just talking about protection in the
>medical sense, though that's certainly a major part of the ICU
>situation. An ICU patient is typically loaded down with monitoring
>equipment and other "attachments" -- for a cardiac patient, that
>typically includes a blood-pressure cuff that triggers every 10-15
>minutes, a fingertip oxygen monitor, five or more leads of telemetry,
nasal oxygen tubes, and, for the first couple of days, a chest-drainage
tube and a Foley catheter.
>Movement is very limited in this situation, but the patient is often
>too groggy to be doing much anyway beyond adjusting the tilt of the bed
>and changing channels with the tv remote.
>
>However, I'm really referring to a deliberate isolation from the
>outside world. In the ICU, visitors are very restricted, in terms of
>both number and duration. (In my ICU, it was two visitors at a time,
>for no more than ten minutes, though patients were allowed to extend
>the visit time to about a half-hour if they possessed the desire and
>energy.) Patients in an ICU do not have telephones at their beds. If a
>truly critical call (or one from the designated contact
>person) comes in, the staff can pass it to the patient via a hand-held
phone.
>For less critical attempts to contact the patient, the staff will
>usually either provide a brief, general status report or direct the
>caller to the designated contact person.
>
>The goal here is simple -- cut down the number of interruptions and
>distractions which the patient is experiencing. Let the patient sleep
>as much as possible. This is often hard to do in a hospital, what with
>the various background noises, the repeated nurse visits for drawing
>blood, the ways in which pain medication can muddle both your mind and
>your bowels (the standard side effect of most pain meds is
constipation, along with "black, tarry stools"), and so on.
>
>Once the patient is out of the ICU and back to the regular hospital
>wards, s/he will usually have a phone and be allowed more/longer
>visitations, up until the time of discharge. And that leads directly to
...
>
>Fourth generalization: Even when a patient's back on the floor, he or
>she is still dealing with the immediate after-effects of surgery, and
>his or her focus is still on recovery. Therefore, unless you are the
>designated contact person, or you have life-or-death information to
>impart, there is only ONE valid reason for contacting a hospital
>patient: to help him or her recover. If you are doing it to satisfy
>your curiosity or to ease your own worries, you're doing it for the
>wrong reason. If you are unable to detect when a patient is growing
>tired or distracted, so that you can immediately and politely terminate
your contact, then you have no business in calling or visiting to begin
with.
>
>In general, the concept is simple: let the patient lead the
>conversation, and pay close attention to his or her mental and physical
>state. Let the patient bring up potentially stressful topics, like
>hospital discharge dates, finances, or returning to work. Recognize
>that the patient may still be using pain-killing medications, and is
not guaranteed to be clear-headed.
>
>Also, don't wear the patient out -- as soon as the first signs of
>tiredness appear, make your exit. Yeah, the patient probably could ask
>or tell you to go away, but it's likely that s/he doesn't want to
>insult or offend you, and is too exhausted to take on the task of
>evicting you. Have faith that the patient will ask you to stay if
that's his or her desire.
>
>So, with all that as background, let's go back to what was posted here,
>and see what's wrong with it...
>
>1) Primarily, the posting publicized information about my situation
>that caused me problems, in two different ways. First, it put my
>property at risk by effectively announcing that my house was going to
>be unoccupied for an extended period of time. Just as there are
>burglars who go on neighborhood house tours in order to scope out
>potential targets for robbery, so there are folks who watch local
>discussion boards for similar hints. When I found out about this
>posting, I had to arrange for extra precautions on the part of the
>friends who were keeping an eye on the house. This was a time-consuming
bit of stress and aggravation that I really didn't need.
>
>In addition, the posting led to a number of unnecessary and unwanted
>phone calls while I was still in the hospital during the early stages
of recuperation.
>Several of these calls included whiny complaints about how I hadn't
>been available for phone chat while I was still in the ICU. (Gosh, what
>a surprise!)
>
>The real winner of those inspired (or should I say "instigated"?) by
>this poster was the call that began with "I'll bet you'll never guess
who this is!"
>Now there's a mindless and arrogant notion for you: the thing a patient
>wants to do while lying in a hospital bed is to play guessing games
over the phone.
>Had I been a tad less groggy at that point, I would have answered
>"You're right." and hung up immediately.
>
>2) It was unauthorized. The poster made no attempt to reach the
>hospital, my contact person, or myself prior to making the post, or to
>otherwise obtain even the most minimal confirmation that a posting on
>this list was desired. (Had the poster asked, the answer would have
>been a clear and unequivocal refusal.)
>
>3) It was inaccurate. By the time the post was made, I was already in
>the process of moving from hospital to hotel.
>
>4) At the lowest level, the poster was indulging in nothing more or
>less than gossip, under the guise of "reporting" some local news. Note
>especially the second sentence: "I've run into many local residents who
>knew Dave, but did not know about this..." Yes, lots of local residents
>know me, or at least know of me, but that did not justify the poster's
>going around and chatting "many" of them up to find out if they were
aware of my situation.
>
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Title: RE: [UC] Dave Axler's posting
