I’d Rather Be Dead

I didn’t think I’d need to do this but it has come up: This post is not a place to discuss the merits of assisted suicide. Many disabled people, including me, find it really unsettling. In the context of able-bodied and neurotypical people telling us our lives aren’t worth living it is especially inappropriate. Comments on the subject will not be published.

Warning: The following includes graphic descriptions of medical unpleasantries.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I have a chronic pain condition. Most of the time I don’t bother getting into detail because I don’t feel like it but it’s illustrative here, so I’ll share. I live in pain. It pools in my hips and my left knee and my right shoulder and sometimes my legs turn to stone. Every step I walk hurts and I keep getting slower and more labored. (My disability is invisible only in the most technical sense. Fortunately people have lots of practice not seeing disability! So, phew.) Sometimes, like the other night, my hands hurt so much I can’t get the non-child-resistant easy-open top off the bottle of pain meds.

(If my hands hurt so much why do I type? Why not use a voice writer? Because this voice here, this is the voice I write with. This is not the voice I speak with. I would write far less if I had to use my voice to do it. And it’s only pain.)

And then there’s the Weird Shit. (It’s a technical term.) I take antibiotics daily because if I don’t I get a urinary tract infection which leaves me crumpled in the bathtub screaming, gushing blood, graying out, waiting for the big antibiotics to get working. Sure I could go to the emergency room and I have — where they give me the same antibiotics I’d get from calling my urologist’s answering service and pain meds weaker than what I take daily. And I get to deal with having medical professionals react to me being trans* and poor.

A sore throat once turned out to be a fungal infection, another one was a tonsillary abscess, the treatment for which was getting stabbed with a large-bore needle then having the contents of the abcess squished out. It was about as comfortable as it sounds, and it tasted every bit as good. I did not bite the nurse practitioner who was treating me. My general practitioner later looked at me really weird when I expressed concern that my next sore throat (it was just a virus and a runny nose) might be one of these until I explained that I’d actually had these things.

The big one was when a cold — in the space of three weeks — became bronchitis, then pneumonia. If I rolled onto my right side, I felt like I was drowning. If I sat up, I felt dizzy. A chest x-ray showed much of my left lung was wrong. I was admitted to hospital that day, the five doctors that came that night took my wife into the hall and told her the things that could be killing me. There was fluid in the space around my lung. They poked at me and stuck a needle in and drew off three hundred millilitres. I didn’t get appreciably better. They installed a peripherally introduced central catheter so they could give me vein-killing antibiotics like vancomycin and aureomycin. The fluid they’d drawn off, cultured, proved to be sterile. More chest x-rays showed shadowy bits around my heart and more imaging showed fluid buildup there too — between having a lung and a third to breathe with and a heart working under the increased burden, I was understandably tired. Even more understandably when some time during the week I was in hospital, my red blood cell count fell through the floor. They were tracking everything that came out of me so it wasn’t like the blood was going anywhere, it just… vanished. They gave me more blood. Later they got the bright idea of drawing off the fluid around my lung at least and took me down to radiological medicine. I got to sit up for it. They did throw in some lidocaine, which at the time I hadn’t figured out that I could say “Hey I don’t metabolize this like most people I need more time for it to take effect before you start stabbing me with shit” so the ginormous fucking needle they stabbed me in the back with? I felt most of that. Ow. I wasn’t supposed to see it (mustn’t discomfit the patient, even if she finds things comforting that most people don’t), but I got a look at the three-litre vacuum bottle half full of murky green fluid they’d sucked out of me. I felt much better, though that lung felt crinkly like cellophane from having been collapsed so long. It was a teaching hospital, so the place was crawling with med students who all (I heard — the nurses wouldn’t actually let them come near my room for which I am still grateful) made excuses to come read my chart. I was medically interesting. I never did get a diagnosis. A real diagnosis, I mean. I know full well that ‘idiopathic pericarditis’ means ‘the membrane around your heart is inflamed and we don’t know why.’

On a fun side note, while I was in hospital busy being sick with Weird Shit I kept getting calls from work. I was the only person in the company who knew how to do what I did, so I provided user support. From my hospital bed. On morphine, with blood running into my arm. It was kind of impressive, in an appalling way. When I was home (I was out of work almost two months and none of it was remotely vacational — at some point I’ll write about having had a whole week of vacation in the ten years since my diagnosis with this chronic pain condition) they sent someone to bring me a computer so I could do some things, occasionally.

I’ll stop with the Ways Kaninchen Zero Is Very Very Ill now. The point is yeah, there’s a lot going on. Most of us could tell similar stories, or scarier ones.

I cry, often. Even with the meds I’m in a lot of pain all the time. I’m exhausted, all the time. I work thirty to forty hours a week in spite of it (though I’m running up against the limits of that too).

People who don’t live with chronic pain wonder how I do this. How do I live with this much pain? How do I keep going? How have I done this since I was a teenager? (I’m thirty-seven now.) I must be a fucking paragon of moral fortitude, because (I’m told) I’m not even all that bitter about it (though I am, sometimes). I’m happy, when I can get around the depression I’ve carried most of my life too.

I could never live like you. I’d rather be dead. You’re so strong. You’re so brave. How do you do it?

I hear this a lot. It’s actually not a secret, though I think the able-bodied are somewhat afraid of the answers. It’s not even difficult. Most anyone could live my life, probably. I have a good life. My doctors listen to me when I tell them what’s going on with me which is wonderful after so many years of being told I wasn’t in pain because the tests didn’t show anything. I have books, games, computers. Because of the last I have friends and I fall in love about five times a year. (I’ve been working on doing things that scare me and I’m telling people more that I’m infatuated, crushing, in love. And that they don’t have to feel the same way about me at all.) Sometimes I can actually stop writing a story and call it finished.[1]

Here’s how I do it: I want to live. I don’t want to be dead. My life is worth living. It’s not tragic. It’s easy. We’ve all got the means to get acclimated to a new home, new furniture, changes in climate and environment. Having a different bodily environment or neurological environment is just something else to get used to.

The commenters in the Why Are They So Angry At Her? thread have it right, I think. The physio/neurotypical haven’t bothered to consider our lives from any perspective but their own and all they see are limits. They imagine being ill with the flu (which leaves me in bed and miserable and hating it too), or an injury that hurt and impaired their movement but ultimately healed: a sprained joint, a broken bone. (All of which I’ve done also: counting the events where more than one bone broke at a time as one, I’ve broken bones more than ten times though I’m a little fuzzy on exactly how many — broken toes are hard to track.) They recall how miserable being ill or injured was and imagine having a disability (or several) as being ill or injured and thus miserable all the time.

We’re not. Even when depression is part of a constellation of symptoms or a side effect of meds or just something else to live with, we’re not. We’re just living, like everyone. When we hear “I’d rather be dead” it often sounds like “you should be dead.” And with good reason. People with disabilities are killed by those who should care for them. Parents kill their disabled children and the public’s sympathy is with the murderers. Caregivers in institutional facilities kill residents and few people care.

Amanda has written extensively about this at Ballastexistenz, and her Background, to the Foreground post is excellent. Not Dead Yet is dedicated to working against euthanasia and assisted suicide policies that make killing us legal, or at least fuzzy. Lauredhel’s post at Hoyden About Town about Christian Rossiter’s lawsuit to refuse nutrition hits most of the points I try to make when I talk about this issue. It’s despair and isolation that drive us to want to die. The neuro/physiotypical don’t see that part of it.

There are social feedback loops that reinforce these attitudes and keep us isolated. Ignorance and fear and hate go together. Neuro/physiotypical friends and relatives stop inviting us to things after a while. We’ve said we can’t come a number of times: we weren’t up to it for whatever reason that day, the venue wasn’t accessible, we didn’t have transportation. Eventually it becomes habit, justified by unhelpful concern. Whatever place isn’t accessible (it’s too much bother to plan for real utility). Oh, they probably won’t feel up to it (our lives are miseries anyway). Around it goes.

[1] Some of my stories can be found at my story blog, though be warned: nearly all of them involve themes of sex, violence, death, horror.

About kaninchenzero

Kaninchen Zero is a woman-focused social justice activist, queer, trans, poly, kinky, atheist, socialist, a gamer, happy in a legal interracial same-sex marriage in Texas, and nearly forty. She has an overlookable physical disability (she can walk but slowly, painfully, and with a limp) and mental illnesses she can't hide any more. Other blog-ish type stuff can be found at her LiveJournal, her Dreamwidth, and her Tumblr. Short-form fiction is mostly at her story blog. The official short form of her handle is k0, pronounced kaynull or kaynought. The avatar is her own drawing.

25 thoughts on “I’d Rather Be Dead

  1. I’ve never had my lungs turn against me, but my spleen tried to kill me recently, and I experience a constant barrage of weird conditions/infections which I suspect is simply the result of almost 10 years of chronic, excruciating pain. Your body just isn’t designed to work this way. But, hey, pain is subjective, and isn’t really a problem, and we don’t really have to treat it, do we?

    How do I live like this? For one thing, if you suddenly experienced the pain I am in, every day, for years, you probably would go into shock and die. It’s been a slow build, I’m used to it. And it is tough, and I do cry, and I miss the person I used to be, but video games aren’t any less fun, sunsets are no less beautiful, life is no less amazing and I have no less right or desire to be alive than I ever did.

    Although if people around me don’t stop acting like my disability is more of a problem for them, I’m going to have much less desire to have them be alive.

    As always, thank you. You say what I feel and cannot articulate with pretty much every post. You are my voice for the things I hold to closely to share, but need to be shared anyway.

  2. I’m afraid that if someone said to me “I’d rather be dead than have your condition” I think I’d reply “I’d rather be dead than be as callous as you.”

    I have had people say “Wow, I don’t know how you do it.” That doesn’t bother me, because they *don’t* know how I do it. Me, 10 years ago, wouldn’t how I, today, do it. Expressing that one’s experience doesn’t line up with someone else’s is value neutral, and could lead to a good discussion. But saying one would rather be dead is decidedly NOT value-neutral.

  3. So grokked, K0, so, so grokked.

    As bad as the pain ever gets, being dead would be worse. So I carry on. And I try to grab for whatever pleasure I can.

    *gentle hugs*

  4. Some disabilities I think I would find harder to deal with than others, but I’ve never understood how someone could say to someone else (regardless of disabilities or a lack thereof) “I’d rather be dead”. Just because someone has a disability doesn’t mean they can’t enjoy life and enjoy being alive – as you yourself said, you have a good life.

    Some things that TAB people say in regards to disability completely baffle me, even as a TAB person myself.

    Hugs if you want them!

  5. I had an encounter with the stunned how do you deal with it issue recently. I was being interviewed by one of the journalist students at the Uni where i go and it was about my aspergers and i was talking about the sensory issues which come with it and she kept asking me about how different it was from ‘normal’… except that for me i’ve lived with these all my life. This is my normal…

  6. I get that all the time when I go into the full extent of my medical conditions. Which I rarely do because of the responses I get. People think I have some repository of amazing and rare coping skills that mere able-bodied mortals lack. The most insistent of such people claims that people with conditions like mine normally commit suicide and that it is the rare exceptions like me who find life worth living.

    I don’t know how to respond. “Coping” just means you live through something, it doesn’t mean you enjoy it. The reason I am still alive is because I just keep on living. The reason I am happy is because I enjoy the world I love in and have a lively curiosity about it. And that when I have experienced depression it hasn’t lasted forever and I suck at suicide (plus I think the sluggishness of depression is internal suicide prevention). I’ve never not been in pain and I don’t know what that’s like. I only get one life and I prefer it to death the way most people do. When people expect otherwise… I just learn not to talk in much detail about my health to people who can’t handle it because the responses to my life can be such a slap in the face.

  7. Even I’ve heard variants of this one said to me, granted without the ‘rather be dead’ part ever explicitly being stated, and I don’t have anything ‘visible’ (actually I think it’s pretty visible, but people just don’t know much about various diagnoses). People usually ask after they hear (one of) my diagnosis(-es). The “How do you do it?” part, I always wonder why the hell someone asks that? Did they really think the answers through? What else do you think we’d be doing? I really don’t know what to say to that, I always hope staring in their direction like they’re something extremely dirty that just crawled out from under my shoe or something will convey the message. That is assuming that that is the expression that shows on my face, I know that is the intended one, but I can never be sure unless I’m in front of as mirror and also paying attention to my face.

    For me, it’s mostly beed service provider people (oh, that sounds like internet stuff, I mean like carers or aides) who ask these kinds of things, not usually other people.

  8. But you’re so strong for not dying


    you are such a weak little baby, depending on pills.

    Pick a side, we’re at war.

    I haven’t got that, probably because I don’t go into it, probably because of my history of suicidal thoughts.

    One thing I love, however, is coming up with concrete examples of my pain. “Being stabbed” isn’t enough, my favorite mental creation was “a corset lined with knives, all pointing in, and they keep tightening the corset.”

    Part of “living” with the pain is adjustment. So… it’s not going away, you say? Well, I’m not going to waste spoons screaming, throwing up, or living in fear. I am going to adjust and live.

    I’ve probably had worse abdominal/pelvic pain since my first kidney stone, however, that was the first, and I had no idea what was happening. Now I still don’t know what’s really happening, but it’s not new. “Oh. I’m in pain. Again.” vs “OHMIGOD mom stop hitting the potholes holy sheeeeeeeeeet *barf*”

    People think the 2nd reaction is the “norm, along with the fear. It’s not. You adjust, you move on, you pick on your mom.

    I really hope no one who’s neuroatypical has heard “I’d rather be dead” because dude, not cool.

    Hope this makes sense, I just came back from a procedure whose name I forgot five seconds after hearing it. The anesthetics didn’t help.

    How do you feel about “bless your heart”? Sometimes I like it, especially when it’s coming from an older woman with a southern accent. Sometimes, well, those who would piss me off if they said it never bother.

  9. Hey, TABs! Guess what? People with disabilities and/or chronic illnesses can still be interested in things. Yeah. Try as it might, we don’t let our world shrink to just hospitals and doctors.

    I’ve said this before (in therapy!), but Bollywood is my suicide prevention. There’s always something new, and if I kill myself, I’ll miss My Name Is Khan. (SRK and Kajol together again!!! Fangirl squee!)

  10. Kaitlyn – “Bless your heart” is also a polite southern way of saying “kiss my ass.” It’s rather fun – I use it occasionally. It’s especially nice when you really shouldn’t insult someone – like the hag in my the office at my daughter’s school. She knows she’s been insulted, but if she said anything about it, it would sound ridiculous.

  11. Uh oh. I am now paranoid about every single time a Southerner has said “bless your heart” to me. (People often seem to use it to me to mean “you’re so naive, it’s touching,” which is pretty insulting, I suppose.)

  12. Well, there’s “bless your heart” in a medical context and in every other context. (Meloukhia, I have lived among them since I was 6 and a half, I have studied their ways. If it was family/close friends, they were insulting you. I’m surprised they bothered to cloak it! :))

    I meant after you tell you tale of woe and misery and whatnot and they gasp and say, “Bless your heart.”

    Or the nurse on the phone, looking at my records – after one visit – helping me sort out my procedure date, who said “bless your heart.” Of course, I look like really young, and when it comes to medical situations where I’m in full battle dress, I look especially young.

  13. Note: I’ve never got “I’d rather be dead than be you!” and am probably unlikely to, but I’m aware that there are a lot of aspects of my life where people already find it next to unimaginable I can live that way – and if they knew that I live that way because I don’t really have a choice, they’d undoubtedly pull the “oh my god your life is horrible I’m glad I’m not you” card. And… uh… I like my life? I’m glad I’m not you either?

    There is this theory I have, which I find pretty logical but a lot of the world disagrees with profoundly:

    Barring mental illness or really exceptional circumstances, people will, generally, have about the same range of emotion. They will usually feel average, nice things and things they enjoy will make them happy, bad things and things they dislike will make them feel sad or upset or angry – but the baseline of emotion is going to be roughly the same, and although things may affect this in the long term it generally evens out. So, you know, a millionaire is not going to be that much (or at all) happier than a poor person on average, and, particularly relevant here, a disabled person, even one with a severe disability, will usually still feel pretty ok most of the time if they’ve had the disability for a while.

    People just… don’t believe this. They’re surprised when lottery winners aren’t happier on average a year later. I saw this thread on Feministe where a study was cited showing IIRC that people living in what were considered really dreadful circumstances (HIV positive in a third world country kind of thing) were not, on average, any unhappier than the baseline, and this was phrased as some kind of problem with them! (I tried to explain this and how I felt they were buying into a very wrongheaded attitude which has some pretty ableist connotations, but I don’t think I did so very well.) And – of course – people seem to think that the severely disabled person must spend every goddamn minute of the day at one on the scale from one to ten. They’re astounded when disabled people feel happy at all, let alone pretty content in general and okay with their lives.

    But that’s pretty much how happiness works, isn’t it? (Again, barring mental illness and exceptional circumstances.) Something happens, we adapt – we’re incredibly adaptable beings, really – we start heading towards the baseline again.

    There’s also this thing that I am probably going to fail miserably at explaining because I have a really hard time putting this into words, but.

    For disabilities like mine, where you’re born with them and they’re pretty non-progressive (mine fluctuate a bit, but that’s it), there’s no sudden loss, no “things I love and now suddenly can’t do :(“. The things I can’t do now, I have either never been able to do them or always had some degree of trouble. So I’m used to it. I don’t know what my life would be like without them, and I’m not interested in wondering. I don’t exactly cry myself to sleep at night because I have sensory issues that prevent me going out to parties, given that I have never been able to go to parties and see no reason why I should want to.

    In fact, the thing with access issues where you’re barred from something because going to it would be painful or unpleasant, and where this has always been the case, is that you probably associate the something in question with pain and unpleasantness. The fact that I see no reason why I should want to go to parties is *caused* by the fact that I can’t go to parties because they’re too loud. For me, parties = pain and noise and meltdowns, so obviously I don’t feel I’m missing out on anything by not being able to go. Similarly, I am frequently surprised by how little my (actually somewhat progressive) video issues bother me – I used to love watching anime, now I start flinching and hitting pause four seconds into the video while we’re still panning the scenery, and I don’t *care*. Because videos no longer equal fun plus tolerable unpleasantness, they equal intolerable unpleasantness, and I’m also not exactly crying myself to sleep at night because I can’t subject myself to unpleasantness.

    (okay, now comes the part where I substitute flailing and handflaps when explaining this in RL.) It’s this thing about how often, if you can’t do something (and haven’t been able to for a long time, and trying to do that thing is associated with pain), you may not *want* to be able to do that something either because it’s something that doesn’t appeal to you. Or if you don’t want something, chances are you won’t really *want* to want that something either, because since you don’t see the appeal in it you are probably not thinking you’re missing out hugely. In fact, you may be actively happy with the present state of affairs! And often, people who can somehow understand the first layer – the not-ableness, the not-wanting – have a complete empathy fail when it comes to the second layer, the not-particularly-caring-about-it. (I actually run into this most often with asexuality. People who get that I don’t want to have sex seem certain that I must be completely devastated by this state of affairs and are completely bewildered by the fact that I don’t want it to change! Although to me it seems a very logical consequence of asexuality.)

    As applied to disability, of course, this becomes complete incomprehension that we might be okay with or actively happy with the way things are.

    …okay, I’ve probably confused myself and everyone else enough for one day.

  14. We have the best readers. I love y’all.

    Personal Failure, your comment made me sniffly, thank you.

    LeeLee, I’d meant “How do you do it?” in the “Golly you must have superhuman coping skills!” sense Amanda referred to later. I live with this because I want to live, period. Coping with it just kind of falls out of that.

    CaitieCat, yay! *hugs*

    Thanks, Caitlin. It baffles me too, but a lot of human behavior does so I’m often not sure what’s me and what’s actually something going on.

    I’ve only recently started mentioning to people that I have sensory issues, Dierdre. So far I haven’t gotten any “How do you deal?” comments because except for olfactory sensitivity they’re pretty minor. But it’s taken me thirty-some years to tell anybody I see things other people don’t. Or that I have tinnitus. My instincts tell me to hide everything and it’s not always helpful. (How do I cope? It’s not hard. I grump about tinnitus because there’s nothing I can do; I deal with the olfactory stuff by moving it or me away; I like the visual distortions and they’re minor.

    Amanda I’m really glad you commented, I had you in mind a lot when I was writing this piece. Thank you.

    Norah a lot of the time I do that. I’m fond of making rude gestures at people’s backs too, like my GP’s nurse. I was explaining to her in the ‘why are you seeing the doctor today?’ part of the visit that I was getting really sick and was having a lot of trouble keeping up with work and was going to have to stop. “We’re going to have to get you better,” she said. “If I can’t stay home all day you can’t.”

    “I’ll trade you.”

    She looked kind of horrified. “Ah, no.”

    Kaitlyn I am an older woman with a Southern accent and I totally say things like ‘bless your heart’ (meloukhia I’ll try to not say it to you though) and ‘oh, honey.’ So I try not to take offense when people say them to me and they don’t mean it in the ‘kiss my ass’ sense. XD

    It was small not real important things that kept me from killing myself when I was suicidally depressed too. Not big stuff. The big stuff was all trying to kill me.

    Kaz I understand where you’re going with that and agree with a lot of it but I think you’re wrong about poverty. Being poor and living with that much fear and uncertainty creates a lot of despair. Especially in places like the US where there isn’t a social welfare system that actually helps people instead of making their lives harder and makes them understand they’re awful horrible worthless people for needing help. Usually because they’ve been economically disadvantaged in other ways from systemic discrimination. Suddenly getting money doesn’t make a person who comes from this kind of background happier because it doesn’t solve all the other problems, their families and friends are still back where they came from and they don’t have enough money to help everyone and there are a lot of requests and demands for that help — there’s often a lot going on.

  15. Again, this seems to me to be an issue where ableism and ageism end up creating the same horrid mindset.

    My most intensive struggle with the idea of death and all it entails was over the last few years of my grandma’s life. She was a mother of five, and I was fairly close to all of them, which meant that I also got to hear a lot about the proper/best way of caring for her.

    My gran had a hearing aid ever since I can remember. The older she got, the more her hearing deteriorated. And since she had not needed until she was in her sixties, and it had worked very well for her for a long time, she had never lerned sign language. So one of the issues my mom and aunts and uncle were dealing with was communication.

    One of my aunts was convinced that gran was utterly miserable, she was just not able to communicate iit to us. After all, she was bedbound (her words, which I am leaving in because they convey her attitude). She could no longer walk, or talk much (if she talked at all). She was sleeping most of the time. She didn’t eat much. She didn’t like excitement. She might be in pain and not telling us.

    This aunt was convinced that really, my gran would have been better off dieing quickly. This was the attitude she expressed about three years before my gran died.

    And there were times when I wondered if she might have been right. After all, my gran had always been such an active person. Surely, she had to miss that. She had been interested in everything that was going on in the world, and now suddenly she couldn’t/ wouldn’t even watch the news anymore. What if she was in constant pain and not telling us? What if the depression she had been dealing with with increasing frequenzy was now constant?

    I spent a lot of time thinking about the life that my gran had over the last years was a life that she wanted.

    I got my answer after the funeral. My gran had died a week after she had refused to drink. And after the funeral, the woman who had worked at the farm since she was a teenager told my mom that, years ago, gran had told her that she would do this. Her own mother in law had done thesame. Stopped drinking when she decided that she was ready to die. My gran had known since then that, if she got a choice, she would do the same.

    My gran chose when she wanted to die. So the years before that? Those years were probably not always happy for her. But she wanted those years. She wanted to live her life, regardles of how different it was to the life of others, or her own life long ago. She wanted those years.

    That’s what I think about now, when I hear how someone would be “better of dead”. Because these people are talking about my gran. They are dening her right to those last years. I will never accept that.

  16. Thanks for writing this. Found myself nodding along.

    And also, Kaninchenzero, what you said in #14 re: poverty is so right. I got a letter from MHA (metropolitan housing authority) yesterday with the results of my yearly review, and despite a month’s worth of scrambling to get all the proof that what they’ve providing me with now is insufficient, they cut my benefits by $25. Which, literally, had me sobbing and seriously considering taking a drug overdose so this would just stop. Over 25 goddam dollars.

    I really, really have nothing I can do about this situation. The American “welfare” system seems to be designed to breed despair. So, pay that $25 to my landlord, or buy a crucial medication? Housing wins. Heh. And they know exactly what this means. I gave them a freaking year’s worth of printouts from pharmacies, hospitals, utilities companies. There is no spare cent. Assholes.

    Sorry for the derail.

  17. I’ve woken up some mornings and wanted to be dead. Not “wanted to kill myself” – that’s an entirely different bunny. Just wanted to be dead, so I didn’t have to deal with the little frustrations of living and doing things normal people have no trouble with. For me, it’s a pretty normal side effect of the depression. So even on those mornings, I’ll drag myself out of bed, slouch into the shower, and start the normal morning process of climbing up the evolutionary ladder (most mornings I wake up possibly at about homo erectus level, and it takes at least the shower and an hour’s upright time for me to manage to get to homo sapiens).

    Wanting to be dead (because I don’t want to deal with the inconveniences of living at the moment) and wanting to die (because I don’t want to live anymore) are different things. I’m not ready to die – I find life too interesting. Heck, I figure my instinct for survival has to be (if anything) stronger than most other people’s, because if I didn’t want to live so much, I’d be dead already. I sometimes get people reacting to me speaking about living with suicidal feelings in the past (such as the time I was driving back home from the other side of town and every single lamppost and bridge support was a temptation to just accellerate straight into it) as though I’m admitting to being actively suicidal now (I’m not). I think this is part of why I characterise such incidents as having a salesdemon for suicide living in my brain – it makes it clear one of the things I do have when dealing with such impulses is a choice. So far I’ve chosen to say no.

  18. Kaninchenzero – “It was small not real important things that kept me from killing myself when I was suicidally depressed too. Not big stuff. The big stuff was all trying to kill me.”

    Wordy McWord. Grokked? Er, spot on.

    When you’re in that mindset, your family is better off without you, the world is better off without you. It is selfish, but ffs don’t tell me that while I’m bawling because I can’t stop feeling that way! *ahem*

    So if it’s selfish, why not focus on what I’ll be missing? The next Jasper Fforde book. 3 Idiots. Whatever masterpiece Johnny Depp does. The new episode of the Simpsons. The new episode of the Colbert Report. And on and on. It’s not rational, so don’t try being rational. Just focus on the tragedy of missing X. By the time X comes around, well I can’t miss Y, better stick around until then.

  19. Thank you for articulating how we keep on keeping on so well. I’ve found that people who have never experienced constant pain are incapable of wrapping their heads around it as a reality.

    We don’t live with chronic pain because we chose it. No one wakes up one day and says, “You know what, life is not challenging enough. I think I’ll add large doses of pain to my everyday life, just to spice things up.” We live with it because it’s what we have.

    And, you know, what we have is not so bad after all. Pain sucks, but being an insensitive lout would be worse.

  20. Dar – but we do joke about choosing our disability/chronic illness. At least my mom and I do.

    “Kaitlyn, if you’d just stop being in pain [something]!”

    “I’ll get right on it.”

    I haven’t thought of choosing it, that should go in the answers to clueless questions. “Why do you do that?” “Because I want to.”

  21. Yeah, we joke about it as well. My daughter likes to tease, but she always follows up the teasing by doing something incredibly helpful, like fetching me another ice pack or doing the dishes for me.

    Of course, as a teenager, she is also capable of lashing out in incredibly hurtful ways. But that is usually followed (fairly quickly) by a sincere apology. And often chocolate. It is amazing how much easier life is when there is chocolate involved.

    Now that I think about it, many years ago someone DID ask me “Why?” And, as I recall, I replied that it was “on a reckless whim.”

  22. “You’re so strong. You’re so brave.”

    Yes, THIS. THIS. I finally posted a rant on my Livejournal about how I’m not brave, this is just my life. Brave involves choices; I don’t have any. (Collapsing is not an option, even though my friends seem to think it is. What, give up? What would the point be?)

  23. You’re welcome, kachinenzero. I’m pretty sure this is “actually something going on”, though, and not just you. I’m TAB, so please correct me if my next thoughts are problematic/incorrect, but I think the “I’d rather be dead” type of comments are a direct result of the ableism in society, of the portrayal as having a disability as a tragedy or something that denies people with disabilities even the possibility of enjoying life (because obviously people with disabilities are so heartbroken and miserable because of said disabilities, right? /sarcasm).

  24. Nope, that rather neatly sums up the issues at hand, Caitlyn. The neuro/physiotypical view is that our lives aren’t worth living. It’s not challenged. It’s reinforced by all the tragedy/charity model crap around disability in the US — they make money off us being seen as tragedy. (And yes, other Kaitlyn, it does get said to people on the autism spectrum also though the context changes. There it’s presented as ‘we have to rewire your brain so it’ll work like everybody else’s!’ I like my brain most of the time thank you and do not want anyone mucking about in it with knives and clips and cautery tools it would be very, very unwelcome.

  25. That’s never been a view I’ve understood at all. I don’t know if it’s because I knew from a very young age people with disabilities who obviously enjoyed life or what (though I’m not going to make the claim that it’s a US/Canada cultural thing because I don’t think it is), it’s just never made sense to me. There are a very few things that I think I’d rather be dead than experience (for example, having to spend the rest of my life in complete and total sensory deprivation with no reprieve ever, which is more than highly unlikely) but I’d certainly rather live with any disability I can think of or have seen talked about than be dead.
    .-= Caitlin´s last blog ..Srs post is srs =-.

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