Skip to main content

I came across an Atlantic article the other day in which I found this quote that set off a string off thought:

“A fallacy of modern medicine is that anything less than perfect health or complete recovery is failure, or at least concession.”

It’s not just a fallacy of medicine, but of society in general.  I felt this myself as a freshly disabled person: “my life is now over”.  This line of thinking stems from the belief that life can only be truly fulfilling if you have a body that is at your beck and call: complete control of the physical.  

This bleeds into our ideas of love as well.  This is the way love supposed to go: you and your partner start from square one with bodies untouched by infirmity.   Decades go by, and then your bodies start failing, and they fail together as you age, with both of you ending up in rocking chairs on the porch in a matching pace of mutual breakdown.   But what do you do when your loved one already has a fucked up body to begin with?  This is likely the reason my last relationship ended; he probably felt we could never even really begin because our bodies were mismatched from the outset.

I think another reason it never began for him is because I, and my body, do not exist in a single place from which a relationship can be launched.  That is, I am physically stable, my health is not in danger -- but neither am I “cured”.  To many people, I live in a limbo that never comes into focus as one or the other: I am neither healthy nor unhealthy.  I am reminded of the first book I read about disability after my accident – hell, the first I read about disability, period: Crip Zen: A Manual for Survival by Lorenzo Milam.  Now that thirteen years have passed and I have read numerous books about disability since, I look back with relief that Milam’s was the first one.  Crip Zen was written by an ornery man who has post-polio syndrome, and it is completely unapologetic in its beautiful and cleansing rage, its unwavering, precise insight into the interaction of the disabled with the able-bodied.  He cuts no corners with his calling-out.  In short, it was the perfect book for me.  It was in this book that I first came across the term liminal: to be in an intermediate or transitory phase or state.  

In the eyes of society, I will spend the rest of my life in a liminal state.  People don’t know how to react to me; is she sick or is she healthy? Do I pity her or treat her as an equal?  Should I be overly gentle and patronizing with her as someone who is convalescing, or should I bypass that urge and instead interact with her as directly as I would any other, healthy person?  

Which brings me to this question: why do we treat “unhealthy” people as less-than to begin with?  The comments section of a New York Times article about the choice of whether or not to share a cancer diagnosis with your circle of friends and family illustrates that people are well aware of this issue.  Several people wrote that the reason they chose to not share their diagnosis with more than a few carefully chosen people was that they did not want everyone else to start treating them differently.  They did not want the pity, the discomfort, and the patronization that would surely follow.  

Do these reactions to those who are dealing with health issues stem only from fear, or is there something else at play?  I believe there issomething else at play, and that is consumerism.  What is the engine of consumerism? It is the drive for perfection.  How else would they get us to keep buying stuff?  It’s so important for us to be perfect, we’re told, that we must spend money on the pursuit of it, even if we don’t have much to spend to begin with (just put it on the card!).  We invest so much in this never-ending chase…and when you are heavily invested in something, the last thing you want to think about is the chance that you’ve been doing it in vain.

Perhaps one of the reasons people react to severe disability with discomfort is because its very existence puts the lie to the consumerist myth of the attainability of perfection. There is no product I can buy that will put me back on the racetrack now; I have been “opted out” of the drive for perfection.  There is no amount of money I can pay that will fix my broken spinal cord.  Yes, Virginia, there actually is a state in which nothing they can sell you will ever help you get back into the game.

Finding myself exempt from this race for perfection has both ups and downs.  On the downside, I never see myself represented in commercials – it’s like people like me do not exist.  On the upside, I never see myself represented in commercials – it’s like the heavy yoke of corporate and media influence has been lifted off my shoulders.

Being removed from the scope of consumerism has helped me turn inward and remember my humanity -- my wondrous, fragile and flawed humanity.  My life is not, as many see it, a consolation prize; disability is a facet of being human, not a removal from it.  After all, if the only whole, healthy person is the one without imperfection, then we are a world of broken people.  And that’s just what the commercials want us to believe.


I am slowly returning from my writing hiatus; I've been crippled by a broken heart for a while, and I'm now finally emerging from my cocoon.

Originally posted to Laurie Crosby on Wed Jul 10, 2013 at 10:08 AM PDT.

Also republished by KosAbility and Community Spotlight.

Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags


More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

  •  Amazing diary (16+ / 0-)

    Very interesting and spot on.

    I do think also it is a reminder of our mortality. Which most people do not want to be reminded of.

  •  The younger of my brothers (12+ / 0-)

    was in a car wreck about 24 hours after my second was born.  This is getting on for 31 years ago, now.

    The doctors told him he would never walk again.  He proved them wrong, though he does usually use a wheelchair.  He ended up a wheelchair athlete, and held the record for his category at the Boston Marathon for several years.

    I grew up hearing every day about how clumsy I was (I have a very minor birth defect that does affect my coordination - slightly.  It's never slowed me down that I ever noticed, but I was 37 before I could snap the fingers on my left hand).  I do wish it had been something other than what happened to my brother that caused my family to drop that particular subject.

    Strength and dignity are her clothing, she rejoices at the days to come; She opens her mouth with wisdom, and the law of kindness is on her tongue.

    by loggersbrat on Wed Jul 10, 2013 at 10:45:40 AM PDT

  •  Well I certainly hear this (32+ / 0-)

    I'm "newly disabled", having become about 70% blind and partially paralyzed last fall and winter.  In American terms I really have ceased to exist.  Ny doctors insisted that I could no longer live on my own, so I was forced to move in with my sister and brother, in what had been the storage room of her little post-WWII suburban cookie-cutter tract house.  The waiting list for disabled housing in my town had been three years long, not about to happen.  

    I'm no longer able to drive, and there is no public transportation worth mentioning out here in deepest suburbia.  I am totally dependent on bro & sis to get to medical appointments, and there are enough of those that I've essentially burned out all transport possibilities just doing that.  I can no longer cook for myself, nor grocery shop; the refrigerator is a chaotic mess that no one seems to have any interest in organizing or lighting.  I'm simply not allowed to use the stove.  I don't eat the way either of my siblings does, my dirt & twigs veg sister sees I eat meat and therefore I must be satisfied with my brother's all  meat, potatoes and pasta diet.  On my own I was not only a healthy balanced diet cooker, but quite accomplished at cooking Mexican, Indian and Chinese food.  You have no idea what I'd give for a plate of my diced chicken and peppers in ginger-peanut sauce now.  My brother refuses to steam rice even when I offer to handle that myself, insists on boiling into glutinous masses.

    It's only been several months, I'm still in the process of wrapping up my old life, I certainly haven't had time to even contemplate a relationship.  I don't know how I'd meet anyone in the first place anyway, I'm offbeat enough that it was always difficult even when I was totally healthy.  Now, being essentially marooned, I can't imagine what circumstances would even make one possible.

    One thing you really nailed is people's inability to grasp what a long-term disabled person needs in terms of consideration and treatment.  The swing between extreme "consideration" and having my needs totally ignored is ever-present, and there is no consistent middle ground, or even consistent effort to understand.   The food situation as I described is a great exaple of this.  I'm not allowed to touch the stove, like a 2-year-old, for "my own good", but nobody lifts a finger to organize the fridge into anything useful to me.  I can't buy my own food, but when I give people money for certasin items, things get put in the fridge and I never see them again.

    Losing my home, my work, my daily routines was/is depressing enough.  The rest of this is getting really hard to take, but I see no way out, and being only in my late 50s, I'm going to have to exist like this (I won't dignify it with the word "live") for many years to come, a massively depressing concept.  So I'll just focus on the small day-to-day frustration and depressions, at least they go away when I go to sleep.

    "Patriotism is the last refuge of a scoundrel" ~Dr. Samuel Johnson

    by ActivistGuy on Wed Jul 10, 2013 at 10:56:05 AM PDT

    •  Crap, dude (25+ / 0-)

      I'm so sorry you're having a hard time with all of this.  The first few years of disability are definitely the hardest, not just physically but also because navigating the new social world can be confusing and depressing.

      Have you considered trying internet dating?  There are sites that are strictly for disability and dating.  I'm aware that you are essentially marooned; even a relationship or friendship over the phone can really help you feel less isolated.  If dating is too daunting for you right now, there are web boards that are essentially online support groups.  Hell, I'd be willing to be pen pals with you. :)

      You might want to look into getting someone to come help you out at home.  Yes, your siblings are there, but they are not helping you have a decent quality of life; indeed it seems that they may be hampering it.  You deserve to have an opportunity to have a decent life just as anyone else does.  Here in California we have In-Home Supportive Services, an agency that will send someone to help you clean, cook, shop etc. -- someone you hire and manage according to your own needs (they work for YOU).  They are free for low-income people.  Maybe something like that exists in your state.

      Also, I wouldn't necessarily take your doctor's assessment of your inability to be independent as gospel.  Often doctors, not being disabled themselves, do not have a clear picture of what people like you are capable of.  I wonder if there is some way you can attempt, one small task at a time, to test your boundaries, but it sounds like your siblings are overprotective/obtuse and may get in the way of this.

      Have you checked for paratransit service in your area?  If it's there you will likely qualify.  It's not cheap, but is invaluable in terms of independence and self-esteem.  That way you could do your own errands, or even just get out of the house for a while and away from your family.  Sorry, don't mean to be ragging on your family, but it sounds like they're not fostering your independence.  Often able-bodied people don't understand that we don't want everything done for us, we want to do for ourselves.  It's hard for people who have never lost it to understand how precious independence is.

      I understand how it can be when it seems like everything is stacked against you, and there are just so many things wrong that it can be daunting to consider fixing them.  My advice is to just pick one at a time to focus on; dwelling on the whole mountain of problems can be intimidating to the point where you just shut down.

      What state and county are you in?  Maybe I can help you look for services.  Send me a private message if you like.  In the meantime, don't give up on your life.  It probably seems insurmountable right now, but things may change.  Good luck.

      •  Thanks! (12+ / 0-)

        Perhaps the worst part, and you picked right up on this, is dealing with my family.  The worst part is they really think they're helping, and get upset if I suggest otherwise.  It's tough, because I don't want to come off as unappreciative of that they do in fact do for me, but boy do they miss the plate on some things and they just don't want to hear it.   A conundrum!  Thanks again for your thoughful response!

        "Patriotism is the last refuge of a scoundrel" ~Dr. Samuel Johnson

        by ActivistGuy on Wed Jul 10, 2013 at 02:43:46 PM PDT

        [ Parent ]

        •  Can you get (5+ / 0-)

          a dorm sized fridge and a microwave for your room? Or even just one of those plug in rice cookers? My husband has Cerebral palsy, is listed as a 'tri-plegic' and is also legally blind and HE can use a microwave, a rice cooker, and a coffee pot on his own (though we use a single serve coffee maker that doesn't use a glass pot, because he tends to drop and break those). If we can help with any other accommodations or ideas, or you just want to talk, Kosmail me and I'll give you our phone number. He's lived this all his life, I know it's a big adjustment, but he's raised TWO KIDS while I worked, I think you can manage to get to where you can live alone with a bit of effort and some cooperation. Having the back up of siblings present while you are adjusting can be a good thing if they can be taught to be supportive instead of being in the way.

          Do you get Occupational Therapy? If not, and if you have any type of insurance coverage, talk to your doctor about a referral to improve activities of daily living. An OT would have a much more realistic view about helping you learn what you need to do to be as independent as you possibly can INCLUDING cooking for yourself.

          "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

          by FloridaSNMOM on Wed Jul 10, 2013 at 05:25:19 PM PDT

          [ Parent ]

    •  I have to say (12+ / 0-)

      first, {{{Activist Guy}}}. Being newly legally blind and paralyzed, too is tought. My first husband was legally blind and VERY independent, but he was 12 when he found out his retinitis pigmentosa was likely going to take his sight. He acted out for a while after that.

      Secondly, I agree with Laurie - just because a doctor says you can't live independently doesn't make it so. I hope you take her advice and assistance in finding services for you.

      Blind people used to be put away as too much of a burden, and incapable of living independently. Now we see that most can actually live a reasonable life. The same with varying levels of paralysis.

      •  Thank you! (8+ / 0-)

        I seem to have managed to lose my initial response to you, maybe it's floating about this diary somewhere?  Anyway, I'll repeat.  

        Although my vision is terrible, Im not "legally blind".  That category is based on measure of vision, field and acuity, in the better eye.  My worse eye, my left, is 95-98% gone, I see nothing  outside of a tiny little patch above and to the left of the focal point.   In my good eye, my right eye, however, the losses of both field and acuity don't reach the cutoff points that mark one as legally blind.   There are necessarily going to be arbitrary cutoff points and I just turn out to be one of the unlucky ones in that respect.  I just wish there was some means of weighing in the "bad eye" as well.  The result is that while I cannot see well enough to work or drive, I don't qualify for the services that a legally blind person does, such as home health aides.  So, just a bit of the usual AG luck there.

        I have been trying to line up service with the local "Handi-Van" as well, but it's not exactly a user-friendly process.  I think (think! but I've been here before) that I'm just about at a point where they'll start accepting my money.  On the good news front, I've been approved for SSDI, and I supposedly came under Romneycare July 1, though I don't have a card yet.  I have the letter stating my enrollment, I'll be going to get some prescriptions tonight, we'll see how the letter flies.

        I have so much still to clear up and take care of from my old life, I really am not in a position to even consider a relationship at this point, though another person to help me with all this would probably be a huge blessing.  But I'll cross that bridge if, as and when I ever come to it!

        Thanks again for your thoughtfulness!

        "Patriotism is the last refuge of a scoundrel" ~Dr. Samuel Johnson

        by ActivistGuy on Wed Jul 10, 2013 at 03:01:45 PM PDT

        [ Parent ]

        •  Good to hear (7+ / 0-)

          that you have a better eye that doesn't qualify as legally blind. My ex's better eye was like your bad one; he had a 2 degree field of vision, just above and to the left of center.

          Fabulous that you've gotten approved for SSDI. That will help you a lot. My sis was just bugging me today to apply, but I'm not sure I want to go through that yet.

          Please, keep us updated. You can always kosmail me, too, if you want to talk.

          And don't worry about the relationship thing. When it happens, it happens. I met my current husband 25 years ago in a bar. I'd never been there before. He was a regular, but normally didn't go on that night of the week. So you never know.

  •  Thank you. (10+ / 0-)

    This is so important, and you say it so well.

    Reminds me of a parent of a child with CP who insisted that PT helpers and such stop trying to make her child walk - but focus on helping her do things she could learn to do with the body she had. A radical concept, that kept up the myth of perfectibility.

    You've given me lots to think about.

    Being attentive to the needs of others might not be the point of life, but it is the work of life. It can be ... almost impossibly difficult. But it is not something we give. It is what we get in exchange for having to die. - Jonathan Safran Foer

    by ramara on Wed Jul 10, 2013 at 12:09:08 PM PDT

  •  My life changed at 24. (13+ / 0-)

    I sustained an injury to one foot which leaves it looking normal in a shoe, but my weightbearing is considerably compromised. I was told I could walk from bed to toilet to chair and that was all the better it would ever be.

    I had a year old son, and was not about to accept that diagnosis.

    My personal religious beliefs say that I coauthor my life with Deity. And that was definitely a plot twist I didn't see coming! But it was up to me whether I sat and wept or sat and worked, and made the best of what is left to me.

    It's okay to do the dishes over two hours, because I have to sit for an hour in the middle of that. It was okay to teach my sons to run their own laundry at the age of seven, because it cut down on how much walking I had to do. Other people can hike with them and bike with them, camp with them, but they have only one mother who will listen to their stories, give them a safe harbor to explore the world from, and that is not something the foot injury took away.

    When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

    by Alexandra Lynch on Wed Jul 10, 2013 at 01:06:03 PM PDT

  •  Excellent diary. Thanks for sharing these thoughts (12+ / 0-)

    Especially this part:

    I am physically stable, my health is not in danger -- but neither am I “cured”.  To many people, I live in a limbo that never comes into focus as one or the other: I am neither healthy nor unhealthy. ...

    In the eyes of society, I will spend the rest of my life in a liminal state.  People don’t know how to react to me; is she sick or is she healthy? Do I pity her or treat her as an equal?  Should I be overly gentle and patronizing with her as someone who is convalescing, or should I bypass that urge and instead interact with her as directly as I would any other, healthy person?

    This is something that lots of people face who have chronic illnesses that don't respond well to treatment, for whatever reason, but which do not render them totally disabled. For example, people with PTSD, or major depression that fails to respond to anti-depressant drugs, or folks who have mostly stable bipolar which occasionally flares up and causes serious disruptions in their life, or people with chronic migraines, or other kinds of chronic pain that limits their activities, or chronic fatigue syndrome, or fibromyalgia, irritable bowel syndrome, or various other poorly understood and difficult to treat diseases.

    American society doesn't know how to deal with such people, because it's a very competitive culture and anyone with less than normal levels of energy, happiness, or ability to function consistently at a high level is pretty much dumped overboard and regarded as "lazy" or "annoying to think about/deal with" by the culture and its institutions. Unless, of course, a person is totally disabled, in which case at least this society usually categorizes them as worthy of sympathy and help (though even then, sadly, not always).

    People who are partially functional are just hard to fit into a box. And if there's anything that's for sure about modern American culture, it's that we have become a very boxed in culture, in which most people have to be "cookie cutter" in order to get ahead or even just make it.

    The most serious problem in American politics today is that people with wrong ideas are uncompromising, and people with good ideas are submissive and unwilling to fight. Change that, and we might have a real democracy again.

    by Eric Stetson on Wed Jul 10, 2013 at 02:37:19 PM PDT

    •  During the time that I was a macrobiotic personal (5+ / 0-)

      cook for a woman who was totally laid out by multiple sclerosis but using her diet as a tool to combat it, I read a book called The Alchemy of Illness.
         I say this person was laid out because she was usually flat across the bed or stiff across a chair. But to think of her as disabled didn't really occur to me. Force of personality goes a long way, and this woman could somehow charm (wrong word but I can't find another for it) anyone into doing anything for her.
          Nowadays I feel like I can never give up after watching her talk someone into picking her up and driving her to a poetry class on Dec. 26th in a snowstorm.

      We are all pupils in the eyes of God.

      by nuclear winter solstice on Wed Jul 10, 2013 at 03:12:19 PM PDT

      [ Parent ]

  •  As a physician, I think I can say with some... (17+ / 0-)

    authority that most of this stems from simple fear, and from the immature delusion that we will be whole and healthy until we're hit by a bus at age 92. In fact virtually all of us will have to deal with the nuts 'n bolts reality of infirmity and disability to one degree or another long before we're ready to meet our maker.

    Physicians, who deal with suffering and disability every day, tend to have personally a powerful fear of illness and disability. In medical school there's something known as the 'disease of the week syndrome' wherein newbie med students start worrying that they have the symptoms of every disease they're studying. Since most medical students and residents are young and very healthy, this often manifests as a cringing fear of disability, and a technician's difidence toward our disabled patients, whom we treat with technical competence but with less compassion than we should, because we're terrified it might rub off on us.

    Most of us get past this and learn to empathize. Candidly, it helps to suffer a few injuries/illnesses/disabilities ourselves, because it both de-mystifies the reality of disability and gets us past our fear.

    My wife and I are in our mid-50s. We're basically pretty healthy; but I've had a knee repair, I've got a bad wrist from a fall, and a cervical disc that 'goes out' now and then. Nothling major, but it gets in the way at times. My wife has bad knees and significant sciatica, so there are some things she just can't do. Like steep stairways or long hikes on uneven ground. But she swims like a fish and paddles a mean kayak...which I can't do because of my wrist and neck. So when we go to a park, she paddles around the lake and I hike the trail, and we meet at the end.

    Intimacy is a real issue when disability and functional impairment are a daily reality, something no one prepares you for and no one talks about on Oprah or 'The View'. It sure helps to have a sense of humor. The first time I had a severe hamstring cramp midway through after my knee repair, we couldn't stop laughing, and it was okay.

  •  Welcome back, Laurie. I'm glad to read (10+ / 0-)

    your writing again.
    I think you make a great and profound connection between disability and consumerism:

    Perhaps one of the reasons people react to severe disability with discomfort is because its very existence puts the lie to the consumerist myth of the attainability of perfection.
    Brilliant. Similar reasons for fearing aging, I would argue.
    The liminal status as well: not healed, not well, and yet clearly not terminal either. It tends to be difficult for people in this culture to deal with ambiguity.
    We'd all be better off if we could learn to accept who we are and go on from there. Unfortunately, there are all kinds of barriers (literal and not) to that realization.
    There was a wonderful wish (not quite the right word) offered to shanikka during her illness: that she be able to see herself as perfect, whole, and complete. To me, that meant in the midst of sickness, too. Maybe it's a bit too mystical for most.
    I always appreciate your thought-provoking diaries.

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Wed Jul 10, 2013 at 03:29:47 PM PDT

  •  Ability limbo... (6+ / 0-)

    That's about where I sit as well. I was diagnosed with asthma at 15, it didn't slow me down too much at the time, though I had to be cautious with things and carry an inhaler. It got worse however, year by year through my 20's and 30's, largely I think, because of lack of health insurance and subsequent treatment/stabilization. I was diagnosed with fibromyalgia in my late 20's. Followed soon after by hyperthyroid disorder. That slowed me down a bit further, required some lifestyle changes and some accommodations. Eventually my thyroid was irradiated and that evened out.. for a while. I still raised two children (one autistic), worked full time, and eventually went to college and graduated Phi Theta Capa. Then my lungs took a dive.
    At 40 I was diagnosed with COPD with 60% lung function. My pulmonologist figures I've lost more than 40% because I used to sing and had higher than average numbers to begin with (which is what masked the down turn for so long as well). I also developed seizures with increasing frequency a few years post thyroid irradiation. Those are still undiagnosed due to lack of health insurance, but I do have a couple of theories that have been put forward. As they don't show up on an EEG, at least not so far, the most likely is Thyroxin influenced seizures (caused by thyroid fluctuation) or myoclonic/tonic seizures of unknown origin. Both of those possibilities, they think, stem from frequent thyroid storm episodes before the irradiation and possible current 'mini storms'.

    I went from graduating college in 2009 and looking at pulling my family OUT of poverty for good ($25-$35/hour starting wage for OTA's) to being disabled in 2010 and unable to even walk across the house without losing my air and some days not being able to get up at all unattended.  Now I also have an issue with my neck and shoulder, possibly a pinched nerve, or a disk issue, maybe caused during a seizure (I know they're not helping it any). But I can't get THAT diagnosed without insurance either. And I make too much for medicaid in Florida until/unless they give in and expand it.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Jul 10, 2013 at 05:48:58 PM PDT

  •  There is also that at the end of one's parent's (4+ / 0-)

    lives, keeping  their child's cancer secret from them is blissful for them.

    Slow thinkers - keep right

    by Dave the Wave on Wed Jul 10, 2013 at 06:00:57 PM PDT

    •  Really? (0+ / 0-)

      I would think it might bring them even closer together and evoke a deeper kind of bliss.

      But I suppose that depends on the parent.  And the child.

      •  You would really want to share your cancer (1+ / 0-)
        Recommended by:

         predicament your soon-to-die parents? Not me. Not saying I'm right.

        Slow thinkers - keep right

        by Dave the Wave on Thu Jul 11, 2013 at 12:15:40 PM PDT

        [ Parent ]

        •  I would have shared it with Mom. (1+ / 0-)
          Recommended by:
          Dave the Wave

          No question.  Especially since at the time of this hypothetical diagnosis of mine she was dying of cancer.

          I say this based on our relationship and the conversations we had about her cancer.

          But as you say, not everyone would, or could.  I wouldn't have shared my cancer diagnosis with my now-deceased father, which is why I used words like "might" and "suppose," although not for the reasons a reasonable person might think.  He was the king of pity parties -- he actually showed up at Mom's funeral acting like the grieving widower even though they had been divorced for 15 years and he had re-married.  Seriously.  

          When I had breast cancer in 2006, he was still alive but we had no active relationship, something for which I gave thanks at the time.  I could just imagine his feel-sorry-for-me-because-my-daughter-has-cancer routine, and it was easy to imagine having seen it for real two prior times.  

          Mom, on the other hand, would have been wonderful.  God, I miss her.

  •  Wow (7+ / 0-)

    To those who shared their stories, thank you.  I don't know what it is about this post that made people open up, but I'm glad for it.

  •  Outstanding diary, thanks. (4+ / 0-)
    Recommended by:
    JBL55, ladybug53, SuWho, FloridaSNMOM

    This remark especially came out at me:

    On the downside, I never see myself represented in commercials – it’s like people like me do not exist.
    I get this perfectly, in a slightly different connection.

    Being in my late 40s, I've largely dropped off our youth-happy culture's "radar," as far as advertising, Hollywood, etc..  

    The liberating part of that is that society's expectations for how "happy" my "carefree youth" was supposed to be in my teens and twenties were a heavy burden. Here I was, a bundle of neuroses, contending with dead-end jobs and dead-end relationships, and I was wearing a heavy yolk of expectations. Today, because I "don't exist" to society's myth-makers, anymore, I feel none of these expectations. It's very freeing.

    It's here they got the range/ and the machinery for change/ and it's here they got the spiritual thirst. --Leonard Cohen

    by karmsy on Thu Jul 11, 2013 at 07:25:17 AM PDT

  •  when i read diaries and comments (4+ / 0-)

    like i see here, i cannot escape the realization that a lot of kossacks blog because we can't get out and it provides some connection.

    also, i know people are far worse off than i which helps me stop obsessing.

    it is soooo  hard to put up with all of this over decades as i have had to.

    time was i didn't complain at all.

    now i complain a lot because i can't swallow it any more.

  •  I worked for a very large company, I could spot (3+ / 0-)
    Recommended by:
    JBL55, ladybug53, FloridaSNMOM

    someone who shared their cancer diagnosis a mile away. Yes people treated them that differently. There was a stampede of Florence Nightingales.  It's one extreme or the other, in my company it was Florence Nightingale.

    I remember meeting a gal's eyes that was in the middle of one such stampede.

  •  Excellent diary & comments. (3+ / 0-)
    Recommended by:
    ladybug53, WakeUpNeo, FloridaSNMOM

    I'm reminded of the essay called "Deadlines" I read in this past Sunday's Book Review section of the NY Times about writers who write about their terminal illnesses:

    [Contrary to Christopher Hitchens' observation,] dying is not really like entering “another country.” As [Susan] Sontag observed accurately, it is our country from birth: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
    Just as no one is immune to death, no one is immune from illness.  Every one of us will be stricken with something in her/his lifetime.  Coping mechanisms rooted in denial do not help anyone.

    Speaking of the NY Times:

    The comments section of a New York Times article about the choice of whether or not to share a cancer diagnosis with your circle of friends and family illustrates that people are well aware of this issue.
    Would you be able to provide a link to this article?


  •  Terrific diary - thanks for the perspective. nt (0+ / 0-)
Click here for the mobile view of the site