I am a deeply sensory person who cares about love and ethics. Hufflepuff to the core. The redwoods were my first home and my heart will live there forever. I live in the sensory world, I am only a visitor to ideas and words. Oh, and my alignment? Chaotic-good.
I introduced a staff person to Dead Like Me, and she told me to watch Wristcutters: A Love Story.
So I did.
And midway through the movie, it reminded me of this dream I’d had. And then I predicted something that happened at the very end of the movie (she wouldn’t tell me whether I was right or not, but I was).
And even further in, I recognized more and more of it from this dream.
And now I’m certain that I must have watched it while delirious or something and it encoded itself into my brain as a dream, because everything I remember seems to mean I’ve seen it before, but I don’t remember it as a movie, I remember it as if I was in it.
And when I was delirious, I’d often get sucked into the things I read or watched, and feel as if I was inside them. Last time I was hospitalized, during one of the worst periods of my delirium I was reading a bunch of ebooks by Donna Williams, and suddenly I was there in those events and I was actually Donna and it got very, very strange.
She was only the first of a long string of real people that my brain decided were actually me – there was even a point where I was my own mother, and my own grandmother, and my own child (I don’t have children). The weirdest of the lot was when my brain decided I was Julian of Norwich. Although as a friend pointed out, Julian and I at least had in common that we’d had seemingly genuine spiritual experiences while otherwise delirious.
“If you didn’t know him when he was alive, you never will.”
—
Brenda, Six Feet Under, Season One Episode Six (s01e06) “The Room”
This quote is so false it’s hard to believe. I’ve started watching Six Feet Under recently because I’ve had so many people recommend it to me. So far it hasn’t lived up to the hype, but it’s far from boring either – well it started out kind of boring but it’s getting a little better now. I’m still giving it a chance. The story is about a family that runs a funeral parlor, and their father dies. One of their girlfriends says the above at one point, about their father.
But this quote, is definitely false. While I can’t say I didn’t know my dad before he died, I can say there are entire sides to him I didn’t know about, or didn’t know very well. And those sides? I’m getting to know better and better the longer he’s been dead. Because the effect he had on the world didn’t go away when he died, and you can read the effect someone had on the world, you can learn new things about a person, there’s all kinds of things you can pick up on after someone dies that you didn’t know before they died. You don’t have to interact with someone directly as a living human being in order to get to know them better. Sometimes their presence as a living human being even gets in the way of you knowing certain things that only become obvious after they die.
So if you lose a loved one without getting to know them first, or without knowing them as much as you’d like, that’s always going to suck, and there will always be questions you won’t be able to ask them anymore. But there will also always be more things you can find out about them, even if they’re not around to talk to. And sometimes that can even take the form of getting to know someone for the first time after they’re dead.
It’s extremely hot and I have thick, bushy hair especially in the humidity. Even with the hair oil (and the daily spray I made out of it) it’s still a lot of hair and it gets hot. So I did this:
Two side braids, ending in rubber bands.
Then I pulled them back until they met in the middle
Tied them together with a rubber band.
Unbraided all hair below that point, removed two rubber bands.
Began to divide up the hair into three pieces, below the rubber band.
Took off the rubber band.
Braided the remaining hair as tightly as I could manage.
Rubber band added at the end of the braid, now the only rubber band in any of this at all.
And now I have two braids going around the sides of my head and meeting as one braid down the back.
I used to do all kinds of strange things with braids, this is nothing. I used to make small braids and then bobby pin them into spiral shapes then hang earrings off them. That was during a time in my life when I considered my body to be a good place to hang as many stimtoys as possible, in the form of jewelry mostly.
It’s also the age when I started learning that when you alter your appearance, everyone else thinks you’re doing it to have some effect on them. Which seemed laughable but people would literally walk up to me and say “You must want attention really bad to wear earrings in your hair.” No, I just liked the way they looked. I had no idea the attention they would provoke and actually found that really annoying.
With this hairstyle, I likewise do it because I like how it looks. Not for other people to look at. The selfies are obviously for people to look at, but more as a means of self-expression than a statement that I’m “trying to be different on purpose” or something.
I have talked to other auties who did the jewelry-as-stimtoys thing and to a one we all had people assume we did it for its effect on other people, rather than because we personally happened to like it. It always struck me as weirdly self-centered that so many people assume that every random person is vying for their attention so badly that they’d risk ridicule to get it. (This goes double when the people assuming that are institution staff whose attention everyone is trying to avoid. They seem to assume a lot that everyone wants them to pay attention to us, which is bizarre given the power dynamics involved.)
Oh and the heat right now? When I’m not in front of a fan, my entire body gets sweat pouring down it, everything but my armpits themselves (strong antiperspirant, I know it’s considered bad for you, I still do it because otherwise my BO is intolerable, and it’s not like it stops sweating anywhere else besides my armpits). I think I got heat exhaustion tonight (because I got a thing so I can now watch Netflix and Amazon Instant Video on my TV instead of my computer, and I stayed out there too long as a result), and I definitely started showing signs that caused a staff person to administer dexamethasone in a hurry. Which helped. She says whenever she sees me drooping, shaking, and panting, she knows I’m probably having cortisol problems in addition to whatever just happened. And so far I always feel better after she gives steroids, so I feel lucky she’s around so often. She notices before I do when I’m starting to have trouble.
Last time she did this was the time I bruised my ribs really badly. Minor injuries like that can still trigger adrenal crisis, in fact one of the common ways adrenal insufficiency is diagnosed is when someone has a relatively minor injury, but collapses, and ends up either diagnosed in the ICU or the morgue. I was told I should have been in the ICU sometimes, that I’m lucky to have survived those times, and that had anyone been paying closer attention I would’ve been diagnosed a lot earlier. By the time I was diagnosed, I was collapsing every night in my sleep and waking up too limp to move and unable to stay conscious very well, and very glad that my bipap’s central apnea mode (AutoSV, see link for details) kicked in whenever this happened and acted as basically a makeshift ventilator.
Anyway, hair. I like this hair. I like that the hair that isn’t in the braids is mostly the really obviously curly hair, that is normally hidden by the rest of my hair.
As for the heat, one of the other things I want to do is crochet myself a vest with lots of big pockets the size of ice packs, and then wear that. I can’t do air conditioning until my house is much cleaner than it is and I’ve unpacked everything, and realistically I won’t manage that in the kind of time I could manage to crochet a vest in.
This patient isn’t usually mine, but today I’m covering for my partner in our family-practice office, so he has been slipped into my schedule.
Reading his chart, I have an ominous feeling that this visit won’t be simple.
A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.
He suffers from both congestive heart failure and renal failure. It’s a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an endless cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.
Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can’t blame him.
Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.
With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.
After 30 years of practice, I know that I can’t possibly solve this man’s medical conundrum.
A cardiologist and a nephrologist haven’t been able to help him, I reflect,so how can I? I’m a family doctor, not a magician. I can send him back to the ER, and they’ll admit him to the hospital. But that will just continue the cycle… .
Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it’s useless to try.
Then I remember a visiting palliative-care physician’s words about caring for the fragile elderly: “We forget to ask patients what they want from their care. What are their goals?”
I pause, then look this frail, dignified man in the eye.
“What are your goals for your care?” I ask. “How can I help you?”
The patient’s desire
My intuition tells me that he, like many patients in their 80s, harbors a fund of hard-won wisdom.
He won’t ask me to fix his kidneys or his heart, I think. He’ll say something noble and poignant: “I’d like to see my great-granddaughter get married next spring,” or “Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary.”
His daughter, looking tense, also faces her father and waits.
“I would like to be able to walk without falling,” he says. “Falling is horrible.”
This catches me off guard.
That’s all?
But it makes perfect sense. With challenging medical conditions commanding his caregivers’ attention, something as simple as walking is easily overlooked.
A wonderful geriatric nurse practitioner’s words come to mind: “Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function.”
Suddenly I feel that I may be able to help, after all.
“We can order physical therapy — and there’s no need to admit you to the hospital for that,” I suggest, unsure of how this will go over.
He smiles. His daughter sighs with relief.
“He really wants to stay at home,” she says matter-of-factly.
As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.
“I know that you’ve decided against dialysis, and I can understand your decision,” I say. “And with your heart failure getting worse, your health is unlikely to improve.”
He nods.
“We have services designed to help keep you comfortable for whatever time you have left,” I venture. “And you could stay at home.”
Again, his daughter looks relieved. And he seems … well … surprisingly fine with the plan.
I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable — at home.
Back home
Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It’s somewhat hard on his wife to have him die at home, she says, but he’s adamant that he wants to stay there.
A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.
The nurse confirms that he is near death.
I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?
Two days later, and two months after we first met, I fill out his death certificate.
Looking back, I reflect: He didn’t go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.
Several months later, a new name appears on my patient schedule: It’s his wife.
“My family all thought I should see you,” she explains.
She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she’s lost some weight. No, she isn’t depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.
“He liked you,” she says.She’s suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.
I ask why.
“They were just doing more and more tests,” she says. “And I wasn’t getting any better.”
Now I know what to do. I look her in the eye and ask:
“What are your goals for your care, and how can I help you?”
I agree with the literal meaning of what’s being expressed here, but I think in context the article was written to promote a particular view of what care should look like.
Articles written in this particular tone have a slant. A hospice-related slant.
I’ve never seen an article about respecting choices tell the story of someone who said “I want to try everything that might help me survive” or “I want to investigate experimental treatment”. Or where someone asks for a feeding tube because of how exhausting their fight to eat has become.
(And, incidentally, someone who wanted physical therapy in an ongoing way would not get able to get it if they were on hospice. If you’re on hospice, only care considered palliative is covered; not care considered treatment. So, generally speaking, you can get a session or two with a PT, but you can’t get ongoing therapy. You can’t can’t generally get hearing aids, speech generating devices, or any other kind of personalized adaptive equipment covered. Hospice is always presented as a beautiful place where people’s choices are respected and they control the end of their life — but that’s only true for people with a fairly narrow range of preferences.)
There is another solution as well. It is expensive, but available. If the spouse is no longer living, there are independent geriatric case workers who, for a relatively smallish fee (a few hundred dollars a month) can set up the elder person with whatever services are available in their area, from weekly visitations to live-in help round the clock. As the elder Ages In Place, more services become available, until the need for hospice becomes evident. But the patient described was beyond those milestones, and ready for compassionate care, which he received from the doctor who was willing to ask the question this patient needed.
The article suggests through innuendo that this man was past the point of benefitting from treatment. The literal facts it describes do not suggest that.
The actual facts it describes are:
A man had heart failure and kidney failure
Management of his conditions was complicated (because treatment for one worsened the other)
Dialysis would have been an effective ongoing treatment, but he was unwilling to get dialysis
This isn’t a description of someone with an untreatable condition getting compassionate end of life care. It’s a description of someone who refused available treatment, and died as a result.
People have the right to refuse treatment for life-threatening medical conditions, but I don’t see that as something to celebrate.
Articles like this always celebrate someone’s decision to choose death. That’s the only choice that is depicted positively. Even further than that, it’s often depicted as the universal choice that all patients make when their choices are respected.
And, in real life, there are elderly men with renal failure and heart failure who are choosing dialysis and are happy with that decision. And there are elderly men who are refusing treatment and are happy with that decision. And there are people being coerced in both directions.
This article, and others like it, aren’t really about choices or patient autonomy. If they were, they would tell diverse stories about choices. They would tell stories of patients who chose to be treated, alongside the stories of patients who did not. But, they only ever tell the one story. That’s not what choice is.
When only the choice to refuse treatment is depicted positively, that’s not really a story about respecting and facilitating choices. It’s a story about encouraging patients to refuse treatment.
I’m all for patient directed goals and autonomy. And I wish that’s actually what this article was about.
I am so glad I read through this towards the end of the article.
When I talk about how my father eventually chose to end chemo because it wasn’t doing anything but making him sick and wasn’t making his (very, very terminal, metastatized everywhere) cancer any better… so many medical professionals I know nod sagely and mutter something triumphant about “you want quality of life, not quantity of life”.
And the thing is, that’s not what my dad was about, and that’s not what he was doing. He wasn’t acting on some kind of abstract principle of quality versus quantity. He didn’t even have a choice whether he lived or died. He just didn’t want to die sick from chemo that wasn’t working anyway. Continuing chemo would not have had any benefit to begin with, not even extending his life a little. Acting like he had much of a choice in the matter makes me really angry. So does acting like he chose death in some sort of noble way that upholds someone else’s principles. He chose the least shitty option of a lot of shitty options, and he really didn’t have much choice even then.
He was okay with his death in the end. And he died unafraid, at home, without pain, pretty much exactly how he wanted to die, and that’s wonderful. (He was afraid the pain would come back, but towards the end of his life, the pain just stopped for some reason. Maybe that part of his body had just shut down too far to feel it anymore.) But I would be really angry if the hospice movement or worse, the right-to-die movement (not that the two don’t have lots of intertwined connections that nobody wants to talk about), started using him as an example of their ideologies, because that’s not what he was about. He wanted to live as long as possible. He was just aware when the time came that he was truly dying and nothing was going to stop it, and he handled that as gracefully as he could manage.
People who are sick or dying, terminally or precariously ill, are human beings. We make choices about our lives. We are not simply bullet points to be used to prop up ideologies. And if people were really so big on choice, then what happened to me with my feeding tube (it wasn’t denied, they just tried everything to talk me out of it at a time when not getting it meant certain death) would never have happened. And my choice to get a feeding tube wouldn’t have been regarded as stupid or selfish. (Anyone hear the one yet where people who want to die are selfless and people who want to live with severe disability or terminal or precarious illness are selfish because we take up too much time, money, and effort, and the noble thing would be to choose death? Yeah, I’ve heard it way too often too.)
Anyway, thank you last couple posters for exposing the truth behind this story and the ideologies that make stories like this so common but their opposites so rare.
Another one I always hear: “We can keep people alive, but it doesn’t mean we should.” (headdesk)
I really hate how self-satisfied some medical professionals get, hearing of my father’s death. With the ugly platitudes about “quality of life not quantity of life” and the feeling that they know they’re right, they totally know they’re right, and they’re happy that my father chose what they think people should choose. When my father didn’t have any damn choice at all, he’d have chosen life if he’d been able to. The fact that he was actively dying, with cancer in nearly every part of his body they looked for it in, gets overlooked: there was no chance of a cure here. WTF. He didn’t die for anyone’s ideology any more than he lived for anyone’s ideology. He made a personal choice out of a number of equally shitty options, and he made it work for him, and his death was beautiful in its own way, but it was not anyone’s talking point. FFS.
[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]
This happens to me ALWAYS.
ALWAYS.
I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.
Just recently I said I was bleeding out of my stoma to a ridiculous degree. Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture. He told me the blood was actually bile and that I was not bleeding. A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots. But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best. Because he does that. He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together. Literally just ignored eery word I said as if I wasn’t talking. It was incredible rudeness. But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something. IDK. I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.
Does your hospital have Code/Condition H/HELP? (It varies in terminology?) Basically, if you can’t get your doctor to listen to your concerns, you (or your family) dial the in-hospital hotline and report the code, and you’re seen by designated responders who address your concerns immediately and investigate why your doctor was ignoring/dismissing you. I’ve never had to use it, but I was made aware of it last time I was an inpatient.
It has Patient Relations, which I’ve had to use multiple times, usually when I was far too out of it to actually call them myself, so my DPA ended up doing it. It was sometimes an extreme struggle even then. Luckily my main doctors all believe me about stuff – they’d be stupid not to at this point, as I said I have so many tests backing up so much stuff I’ve said that they no longer doubt anything I say. But when I end up in different departments of the hospital, I often run into trouble of various kinds. And sometimes it’s trouble that would not be worth calling Patient Relations over. But sometimes it’s life and death stuff. And I never know which it’s going to be. But I have never been able to successfully contact them myself, it’s always been done for me.
One example was the time they said that because I had a developmental disability, I would need an outside staff person with me 24/7 before they’d agree to admit me, even though I’d been hospitalized there many times before and had never caused any trouble or needed anything that different from any other patient because of being DD. My DPA called Patient Relations and I was admitted immediately. But then they immediately started trying to throw me out, and it took the combined efforts of several of my regular doctors to keep me there. And then it was a fight to get life-saving medical treatment, where even Patient Relations couldn’t help us and we had to turn to the Internet and the threat of bad publicity. (They conceded, when pressed, that I needed the treatment in order to survive. They just kept coming into my room every day, several times a day, trying to persuade me not to accept the treatment. Once people started calling the hospital, they suddenly said “You’re getting your feeding tube tomorrow.” And I only got one more bizarre visit trying to dissuade me, and even that was half-hearted on the part of the doctor.)
Then when I got the feeding tube and there were complications, they ignored my pain levels (because a part of the tube was lodged in the wrong part of my body, causing excruciating pain any time I moved at all) and ignored the fact that something could be wrong, and treated me like I was just complaining too much and that if heart patients could stand up then I could surely stand up even though I couldn’t roll over in bed without sobbing my eyes out. Meanwhile my roommate got tons of pain meds thrown at every twinge she had no matter how minor, and told stories of a procedure similar to the one I’d had, and talked about how wonderful it was that any time she squeezed their hand they’d give her more anesthesia so she wouldn’t feel the pain. (I had my procedure screaming in pain due to non-working anesthesia and was simply told “hold on” for the entire hour or so the procedure took. I was also told “You won’t remember this later so it doesn’t matter that it hurts.” I still remember that, all of it. Nobody gently held my hand and told me to squeeze if I felt pain so they could adjust the anesthetic. They just treated me like my yelling and squirming was bad behavior.)
And that was all in one hospital stay, a couple years ago. So Patient Relations was helpful for parts of it but couldn’t do anything about other parts. And this is far from the only time I’ve had to involve Patient Relations. There was the time they decided that I could eat just fine, gave me a giant fish dinner, and I puked it all up of course, but they said I was good to go home even though I couldn’t keep down any of my meds and needed IV replacements so I wouldn’t die. And then when I refused a med that was on my chart as something I was allergic to, threatened to stick it up my butt if I “refused” it. My DPA called Patient Relations and suddenly I was given a week to recover and start eating on my own, given new nausea meds, etc. (That was my first gastroparesis hospitalization, but we didn’t know back then that I had gastroparesis. They just thought I was randomly extremely nauseated.)
And there was the time I belonged in the ICU – one of many times probably – but my doctor said he would only treat pneumonia, not any of the other conditions I had, because pneumonia was what I was brought in for, therefore… none of my other conditions mattered. (Those conditions were eventually found to be gastroparesis, myasthenia gravis, and adrenal insufficiency, all of which were messed up either by the pneumonia or by the treatments for pneumonia or both.) Nobody put me in the ICU, although they did transfer me to a better ward after someone kicked up a fuss about them ignoring my needs when I was on the cardiac ward (as overflow, not as a cardiac patient – they didn’t like the fact that I was violently ill and making their quiet, sedate ward too noisy – so they simply closed my door and pretended I didn’t exist and that my call bell didn’t exist either). I was severely delirious and in no state to explain everything that was happening to anyone, and I’m lucky I didn’t die. (I know what death looks like, and it was sitting patiently next to my bed for weeks.)
And on, and on, and on. I could tell so many stories, and Patient Relations only helps sometimes, in some situations, to some degree.
The epidemic began on September 13, 2005, when Blizzard introduced a new raid called Zul’Gurub into the game as part of a new update. Its end boss, Hakkar, could affect players by using a debuff called Corrupted Blood, a disease that damages players over time, this one specifically doing significant damage. The disease could be passed on between any nearby characters, and would kill characters with lower levels in a few seconds, while higher level characters could keep themselves alive. It would disappear as time passed or when the character died. Due to a programming error, players’ pets and minions carried the disease out of the raid.
Non-player characters could contract the disease but were asymptomatic to it and could spread it to others.[2] At least three of the game’s servers were affected. The difficulty in killing Hakkar may have limited the spread of the disease. Discussion forum posters described seeing hundreds of bodies lying in the streets of the towns and cities. Deaths in World of Warcraft are not permanent, as characters are resurrected shortly afterward.[3] However, dying in such a way is disadvantageous to the player’s character and incurs inconvenience.[4]
During the epidemic, normal gameplay was disrupted. Player responses varied but resembled real-world behaviors. Some characters with healing abilities volunteered their services, some lower-level characters who could not help would direct people away from infected areas, some characters would flee to uninfected areas, and some characters attempted to spread the disease to others.[2] Players in the game reacted to the disease as if there was real risk to their well-being.[5] Blizzard Entertainment attempted to institute a voluntary quarantine to stem the disease, but it failed, as some players didn’t take it seriously, while others took advantage of the pandemonium.[2] Despite certain security measures, players overcame them by giving the disease to summonable pets.[6] Blizzard was forced to fix the problem by instituting hard resets of the servers and applying quick fixes.[3]
The major towns and cities were abandoned by the population as panic set in and players rushed to evacuate to the relative safety of the countryside, leaving urban areas filled to the brim with corpses, and the city streets literally white with the bones of the dead.[7]
And I’ve always been good at finding those connections, instinctively, and finding connections most people don’t find, and therefore interacting with the world in a very unusual way from the moment I entered it.
And I knew I’d gotten some of this from my mother, who sometimes does similar things. But I didn’t realize I’d gotten a lot of it from my father as well. I didn’t even begin to suspect, until he was dying and began to say things that indicated he was well capable of seeing these odd connections between things himself.
But after he died, he had my mom send me a lot of his things. Shirts, rocks, a backpack, hats, beard clippings.
And I was able to see him more clearly than ever by looking at the way all these objects connected with each other, all centering on who he was.
And I was able to see that he was able to see such connections between objects himself. And I was able to see that he spoke Rock, and Tree, and Mountain, and lots of other languages I speak, and that he’d hinted at being able to speak before, but not so strongly as he did after he died.
And through all these things I feel like I can connect with what he is now, which is… something that reminds me of Gandalf, after he’d fought the Balrog and won and been taken out of the world and put back into it again in a new form. I don’t understand it, I wouldn’t have believed it before I saw it, and I’m not the only one to have noticed it. (I tend to try to confirm perceptions like this by asking specific questions of other people, because it’s too easy to fall prey to wishful thinking if you’re the only one perceiving something.)
I feel like I know him better now, and am constantly connected with him now, and his love is always there, and my love is always there for him, and mourning isn’t as bad as people made it out to be, it’s actually been quite beautiful sometimes. And yet I fear to say that, because I don’t want to sound like everyone ought to mourn the way I mourn, or everyone ought to be as happy as I am, or something like that. I don’t mean that at all. I’ve been told that people like me were originally thought to be in some kind of denial because we didn’t “mourn properly”, and then later they realized it’s actually one of many very healthy ways of handling grief and not a dysfunction at all. (And apparently it’s often connected to having strong spiritual or religious convictions that help you put death in context.)
I feel like the hardest part was before he died, weirdly enough. My stress level was through the roof, and it only started leveling off after he died.
But towards the end, he was doing exactly what we’d talked about – trying to immerse himself in love, which is the only antidote to fear when death is involved. We all tried really hard to love each other as much as we could, no matter how stressed out we were. That was the one thing we could give to each other as he was dying. And he became incredibly good at perceiving love in others, as well as giving it. Towards the end he couldn’t talk well, so we just stared at each other through Skype, and I made purry cat noises at him. He once said that anything I had left to say to him, he could see in my eyes, so I didn’t need to type it all out. I still wrote him a letter towards the end. Writing that letter was hard, it really did feel like throwing a rock in a deep lake and walking away forever, knowing I’d never be around when the rock hit the bottom.
But then after he died… he went away for a few days, but then he was still around. I could feel him still being around, outside of time somewhere, in Gandalf mode. (I always did tell him he had Gandalf eyebrows. But in temperament he was more of a Radagast, I think. More connected with living things of all kinds.) I knew that everyone sort of exists outside of time in a way that can’t be destroyed, but I never understood what that could mean for after death until I saw it.
And people ask me questions about their loved ones sometimes when I talk about these things. I don’t know anything about anyone else’s loved ones. I barely understand how it worked for my father. I just know something happened, and he’s still here, but different, and that’s kind of amazing. I don’t care if anyone else believes me or not, it’s a personal thing. It just… is what it is, and I have no particular explanations or wisdom or anything about this. I’m just relieved that I can still continue a relationship with him, still continue getting to know him, including sides of himself he didn’t show as much when he was alive, but that shine really brightly after his death, now that he has nothing more to fear. And that love and absence of fear is amazing. I hope I die half as well as he did.
And they were right, grief is a form of love – whether it feels good or awful at the time, you can’t grieve without loving.
I didn’t like orange Until I got your orange shirts Now, my favorite of your shirts are orange Because I didn’t like orange. So I didn’t associate orange with myself But to wear your orange shirts And see that orange looked good on me I could find the part of you That you left inside of me
Anonymous asked: 'Voicy'? I've never heard it before. Was a name before or you're making it?
I’ve only heard it in my family, a few relatives have the name and I wanted to commemorate them. But I’ve literally never heard of it outside the family, and I’ve looked far and wide. My dad thought maybe it started out as a reflection of them being extremely loud as babies or something, and then stuck around as a family name, but we don’t really know where it came from for sure, only that it’s from the Okie branch of the family. My great-aunt Voicy told me it took her a long time to get used to her name but eventually she came to embrace it.
This is a picture of my great-grandmother Voicy’s grave, and someone put a picture of her daughter Voicy on there too thinking it was a picture of my great-grandma, but they’re actually two separate people with the same name.
Seems my (and others’) experiences aren’t so unusual after all…
“Universally” by Phideaux. Lyrics:
“Now is the time I choose to go – it is my time I know For a voyage like a dream from the days spent you and me” Yes I have yes I heard yes I know you must go Yes I love you yes I’ll always be your friend through the grave So I take you out to sea, ashes for the universe Universally, universally, universally, universally Now you are free, where am I now? Baby, a rain came tonight and it seemed you’d returned Down the river’s way Baby I’m running from the room – I get right inside the garden Try to find you – try to find you… I wander to the ground, to the ground My soil – it is you – our garden stems from you, from you My soil – you are true – I garner strength to carry on from you My soil – my bloom – from sea you flew To mist from sky your kiss arrived And so the awareness of you in the darkness gets me high My heart in the darkness gets me through, the darkness gets me high, in the darkness, my heart, in the darkness, in the darkness, in the darkness, gets me through, in the dark, in the dark, in the darkness, in the darkness, in the darkness, gets me high, in the dark, in the darkness, my heart, in the darkness, in the darkness, gets me through, in the dark, in the dark, in the dark
Mrs. Whatsit went tumbling backward with the chair onto the floor, sandwich held high in one old claw. Water poured out the boot and ran out on the floor and the big braided rug.
“Oh dearie me,” Mrs. Whatsit said, lying on her back in the overturned chair, her feet in the air, one in a red and white striped sock, the other one still booted.
Mrs. Murry got to her feet, “Are you all right, Mrs. Whatsit?”
“If you have some liniment I’ll put it on my dignity,” Mrs. Whatsit said, still supine. “I think it’s sprained. A little oil of cloves mixed well with garlic is rather good." And she took a large bite of sandwich.
"Do please get up, Charles said. "I don’t like to see you lying there that way. You’re carrying things too far.”
“Have you ever tried to get to your feet with a sprained dignity?”
”
—
Madeleine L’Engle, A Wrinkle In Time
I can really relate to that passage right now. Yesterday, I had to walk two blocks, and part of the walk is a hill. It’s steep, and uphill or downhill it’s dangerous to me without crutches. But I was managing it with a cane, because I’d forgot about the crutches until I got to it.c
So I went there, had the meeting, and left for home. I’d gotten up and down the hill once just fine. I was almost home. Then I realized that I’d left my purse in the room upstairs. I couldn’t call anyone to come get it. My cell phone got canceled for reasons unknown that I have to look into now that I have money again. So I turned around to go back to get my purse, and stepped right off a high wooden curb into thin air. And then hard onto my hands and knees on the pavement of a parking lot. First time I’ve skinned my knee since I was a kid. (I did fall on the ground, I just never fell while balancing or climbing. Sort of like Viktor Krum was graceful in the air and clumsy and ungainly on the ground. My falls rarely caused much injury though. My body was durable.)
Sprained dignity is totally what this fall was about. I didn’t hurt anything badly. I feel a little banged up but not much worse than I already felt. I did feel really crappy when I got home, and took the limit of Tylenol that I’m humanly allowed without damaging my liver, but after that I’ve felt mostly fine.
But I remember lying on the ground wondering how I was going to get up. I’d saved my iPad from dying, so that was good. I wondered if I should type something out on the iPad and scream for help, or whether I should work out a way to get up. I strongly preferred working out a way to get up. I knew there were lots of people standing around in the parking lot, and i didn’t want to chance being helped up by, say, the teenage boy who had “ironically” yelled “hey BABY!” as I passed.
(Yes, I know that when they yell that at a fat short ‘woman’ with facial hair, a cane, suspenders, a checked shirt, a hat, and a big red backpack, slowly picking hir way down a hill with hir head hunched over staring at the ground in front of hir, they’re not voicing attraction in any way. It doesn’t bother me much anymore, although I did entertain brief, semi-amusing fantasies of whaling on them with my cane, just to see how they’d react.)
Anyway I figured out a way to pull myself up the curb. And from there my cane did the rest. Canes are very useful things.
Walking up the hill again was agony. I felt like if I put one foot wrong on the gravel I’d fall. I used to be able to enter into a relationship with something like a hill, feeling it out kinesthetically, almost effortlessly, like a mountain goat. One time I even echopraxically climbed up a rock right after a teacher who had told us not to bother trying because none of us could do it. I didn’t even think before following him up the same route without effort at all. Then even though all the other kids – all of them boys, which made him even less likely to believe that this 12-year-old ‘girl’ with not much upper body strength and no special gym class or sports accomplishments,
I got up there though, and I got my purse. On the way down the hill, though, I felt like I needed help. I was wearing my oxygen. I’m supposed to always wear oxygen when I walk, and I needed it. I was getting light-headed, and spacey, and the last thing I needed to do was space out and slide down the rest of the hill on my face.
So I asked my dad for help.
I said something along the lines of, “I know this is far from the hiking trips we used to take, but it feels about as strenuous as one of the harder parts of the shorter hikes maybe. And I really need help or I’m going to fall on my face.”
And every time my mind wandered, I heard his voice in my head clear as a bell, saying “caaaareful, now,” the same way he’d have said it in real life, unexpectedly too. And he said it all the way down the hill, then I rested on a couch outside the loading area of the second-hand store (everything’s overflowing because the college students are leaving and it’s a university town), then he made sure I got off the couch before I just stayed there forever. Then I made it home just fine, and was so happy I thanked him a zillion times.
He reminds me of Gandalf, after all the mess with the Balrog was over. Like all the bad parts removed, turned into something powerfully good beyond my understanding, but still undeniably who he is, his personality, his essence is still there.
I can’t say I understand a lot now, but I understand more of what happens after death for the luckiest people, than I understood before. It’s now my endeavor to meet him there one day. And as far as I know the only way to do that is to embrace love early and often and to follow it where it leads no matter how hard the road, because however hard the road seems, it’s better than what seems like the easy way at the time. Unfortunately I’ve still got a rather massive ego problem, like most people, so I want to take the easy way out at every turn. But every time I try I’m reminded that short cuts make long delays and all that. The easy way out is the hardest way forward. The hardest way is easiest, if we’d only ever fully recognize that.
I think I read something like that in the Tao Te Ching once, that book is amazing for condensing truth into as few words as possible.
Anyway, I don’t expect anyone else to believe my experiences, I would have trouble believing them myself if they didn’t match so well to what other people who knew him are saying. And if they weren’t so vivid and unexpected. Whatever’s going on, I think it’s beyond normal cognitive understanding.
Los Angeles–based designer Emily McDowell was diagnosed with Stage 3 Hodgkin’s lymphoma at age 24, enduring nine months of chemo and radiation before going into remission.
“The most difficult part of my illness wasn’t losing my hair, or being erroneously called ‘sir’ by Starbucks baristas, or sickness from chemo,” McDowell writes on her website. “It was the loneliness and isolation I felt when many of my close friends and family members disappeared because they didn’t know what to say, or said the absolute wrong thing without realizing it.”
The 38-year-old designer has been cancer-free ever since. But the emotional impact of the experience lingered, inspiring her to design a newly launched series of Empathy Cards—emotionally direct greeting cards that say the things she wanted to hear when she was ill.
The blurbs about each card are great to read (click on the photos), as is the Slate article describing the inspiration for the card line
Oh these are wonderful. I don’t read Slate, though, not after being defamed there along with several other self-advocates. But the cards are wonderful. My friend got cancer and the first gift she wanted from me was a “Cancer Sucks” bracelet, she didn’t want any of that inspirational bullshit. If she goes through chemo I’m totally getting her the chemo card. (She’s done radiation so far.) And I’m thinking of doing some creatively snarky needlepoint for her about cancer. My dad just died of cancer last year, and he didn’t want to be bullshitted either.
My favorite though is still a friend of a caregiver, who got cancer and managed to survive it and then started doing cancer walks and stuff… with a team she named “Cuck Fancer”.
when people think if they carefully explain to you why being disabled is socially inappropriate, you will stop being disabled
It extends far beyond the “socially inappropriate” reasoning, too.
If you just understand well enough why you have to do this thing, then you will be able to do it, is some of the scariest reasoning of medical personnel that I have ever encountered.
Yes, this.
And at least in medical contexts, this increases the more disabilities you add in (or the more things your disability affects). No, I can’t stop being developmentally disabled just because it’s outside your specialty.
“No I can’t stop being developmentally disabled just because it’s outside your speciality.”
Oh. Those are the words. Thank you.
The most dangerous “outside your specialty” one I ever encountered was when I wasn’t yet diagnosed with myasthenia gravis or adrenal insufficiency. My mom was literally about to be diagnosed with myasthenia gravis while I was still in the hospital. I was about to be diagnosed with gastroparesis, but even that hadn’t happened yet (it would later on in the same hospitalization). I’d been hospitalized for pneumonia so bad that even my friends could sense death hanging around in the room – one of my friends took one look at me on a video chat and burst out crying, and then told me to go to the ER immediately.
So I had pneumonia, and that’s what I was admitted for. I was put on a cardiac ward as overflow. Cardiac wards are generally pretty quiet places, I’ve been on them before for actual cardiac reasons. People there may be seriously ill, but it’s not generally messy, violent illness. They put me on medications that, combined with the undiagnosed gastroparesis, had me vomiting so constantly that they moved my roommate to another room so she wouldn’t have to hear it. Then they closed my door so they would have to neither hear nor respond to it. They were cardiac people, they didn’t want to deal with vomiting, so they just… didn’t.
Myasthenia gravis means that as you use a muscle, it weakens, often dramatically. The muscles used in throwing up are remarkably close to the muscles used in breathing, which were already overworking from the pneumonia. I started breathing very shallowly and my oxygen levels went way down, but they refused to put me on continuous oxygen monitoring.
Meanwhile I was heading into adrenal crisis, which causes a severe overall physical weakness. I became too weak to get out of bed, too weak to roll over onto a bedpan, eventually too weak to move. I shat the bed, and because I had a developmental disability, their response to this was not “OMG you’re really sick we should look into this,” it’s “You shouldn’t get away with that, because if we let you shit the bed you’ll get used to it and never want to use a toilet again.” Which just added insult to humiliation.
Just before I got too weak to move, I curled myself up on the bed in a really weird position. I lifted up the top of the bed as high as it would go, and then I curled up so my back was facing the top of the bed and my face was pointed downwards. I reasoned that this way if I threw up I’d be the least likely to aspirate. It came in handy. Given that nobody was willing to clean me up, let alone help me stop vomiting.
At one point I heard a huge commotion in the hall and then a voice shouting “IF YOU KILL HER I WILL HAVE EVERY LAWYER IN BURLINGTON ALL OVER THIS PLACE!” My DPoA had sent her staff person, a cancer survivor and survivor of that hospital (which does have to be survived at times, because they’re as likely to, deliberately or inadvertently (it’s really hard to tell malice from severe incompetence sometimes), kill you as the illness is on some of the worst wards), come up to check on me. What she found was that they’d shut my door so they could ignore the puking. So she’d throw it open and they’d shut it again and after awhile she started screaming at them and that’s what I was hearing.
I went delirious shortly after that and don’t remember a lot of reality.
But one thing that happened that was utterly horrible: My first hospitalist got into an argument with my DPoA. My DPoA said I belonged in the ICU because the severe weakness combined with the nausea meant I needed a level of vitals monitoring that didn’t exist in the cardiac ward. The hospitalist told her – and I vaguely remember the conversation – “She came in for pneumonia. I’ll treat the pneumonia. That’s all I need to treat. I don’t really care what else she has or whether she’s been eating or any of that. People have survived pneumonia without eating just fine.” (I’d been either not eating, or eating only broth and crackers, for about a month before I came in, and had lost about 40 pounds. But because I was still fat, they didn’t believe me until they measured my weight, later, themselves. So he ignored how long I hadn’t been eating, and treated the “not eating” as if it began when I entered the hospital.)
My actual doctor, who wasn’t there at the time, tells me now that I not only belonged in the ICU, but that I’m lucky to have survived that first few weeks of that hospitalization at all given how little support I was given. I really needed steroids, breathing support, Mestinon, and constant monitoring, but I didn’t get any of those things. I knew I was near death, but I was lucky enough to be just far enough outside the event horizon to claw my way back to life with nothing other than stubbornness. But I was also close enough to death that if I hadn’t been fighting to stay alive, I would have died easily, and could have died easily, without anyone knowing I had a choice in the matter. There’s a weird limbo zone where you do have a choice, and I’ve encountered it more than once in these situations.
But yeah. “I’m only treating pneumonia, I don’t give a shit if something else kills you” is the worst sort of this thing I’ve ever gotten. When it was pneumonia, gastroparesis, myasthenia gravis, and adrenal insufficiency. I don’t know why I’m alive, because this sort of thing has happened more than once, although that was the most blatant example. My doctor isn’t quite sure why I’m alive either.
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1:13pm
August 3, 2015
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Anonymous asked: 'Voicy'? I've never heard it before. Was a name before or you're making it?