Nobody wants to live like me
Feb. 23rd, 2016 07:18 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cosmolinguistAn online acquaintance of mine has been having some really dreadful diabetes-related eye problems lately. My heart goes out to him...and this combined with how little I know him means that I haven't said anything about the effect his descriptions of the treatment he's started having have affected me: they were out-of-the-blue enough and close enough to things I remember from my childhood that just the title of one of his blog posts sent me into an anxiety attack, and I've had nightmares.
Another thing I've not said, and wouldn't say, is how sad and hurtful I find his terror at going blind (which is a possibility though, as I understand it, not likely now that he has crowdfunded money for the treatment. Don't get me wrong: I live in terror of losing any of my sight and I think it's pretty normal to expect that anyone would.
But his implication that his life would be over, and the "he won't go blind!" celebrations at the success of the crowdfunder left me feeling a little hurt and sad. I remember the original blog post including something like "I'm a writer, so my job depends on me not losing my sight" and I'm thinking ...actually that'd be one of the easier careers to adapt to? you don't even have a commute! which I immediately felt bad about.
It's not fair because I'm at a totally different, much more matter-of-fact, point in this journey of disability. It helps me that I've never been able to see more than I can now so I think this is normal. And of course assistive technology is no picnic and yes I'm approaching this from a very social-model "being blind is no big deal!" perspective which, yes, if we lived in a perfect world but since we live in one that disables us for our accessibility demands, yeah it is just easier and better and nicer to keep the sight you have.
Of course I'm happy that someone isn't going to go blind. But I wish I could find a way to be happy about that without having to be sad that I'm living a life most people would dread -- and I'm really sighted for a partially sighted person! And yet...
I was rushing for a train home on Sunday evening, tripped over a roadworks sign or pavement A-board that had apparently fallen over in the hideous winds we'd had earlier in the day. Lying flat in the dark and rain, it was totally indistinguishable from the sidewalk and my foot just caught the edge of it... So I spent a minute or two hoping I hadn't torn my trousers too badly (I hadn't) and that my phone, which had flown out of my pocket, hadn't ended up in the road (it hadn't, I just couldn't find it for a while (perhaps because it, like everything else around me, was black and shiny!)).
I got up, with my elbow and knees and hands stinging, determined that I didn't look obviously dreadful, and shuffled gingerly to the station. I was sort of glad no one else was waiting on the platform, and tried to calm myself down. As always happens when my sight causes me some kind of problem, my anxiety had gone absolutely through the roof, so I tried to calm my breathing down and not cry.
On the train was the first time I'd been in any reasonable kind of light since I fell, and I could see that while my black trousers were covered in mud and my hands were scraped and dirty, I was apparently passing for normal. At least I wasn't obviously oozing blood or anything. Though my knees felt like I was, but I didn't want to roll up my pant legs and look; I saw no point in showing the grossness to the other people on the train, especially since I didn't want to touch anything until I washed my hands.
Off the train at Huddersfield I headed for the toilets, where two people were standing in front of the hand dryers in such a way that I couldn't get around them to the sinks. They knew each other and were chattering away, eventually about how they didn't think the dryers were working very well. I estimated that they'd been standing in front of them for approximately a year, long beyond the time I'd have given up, shaken the water droplets off my hands, and fucked off out of the tiny bathroom. That they didn't is enough to make me believe telepathy is impossible, because every fiber of my being was telling them to do precisely that. A mumbled, dispirited "excuse me" got me nowhere over their chattering, and unable to do any more I just stood there. Eventually one noticed me looming I guess, asked a question that meant I could say "can I just get to the sinks," and moved about a centimeter so that I still had to squeeze past her huge bag to get to the sinks, with a little "sorry" as I plowed through, which I immediately regretted -- what did I have to be sorry for? -- but I'd said it in the kind of social-lubricant way that's so popular in both the culture I've come from and the one I've moved to, where you say "thanks" in shops when you're handing over the money.
I washed my hands, assessed my knees (one very bloody, one less so), finding nothing better to clean them with -- as the chattering women had observed, no paper towels -- I wiped the blood away with my hand, like a kid that wants to pretend they haven't been picking at a scab, washed my hands again and went to get on my train.
The train was rammed; more people than seats. I ended up shoved along in a kind of chaos as the few remaining seats that had just been vacated were snapped up, mostly by people that were already on the train but with a few barging past me to their reserved seats. This always makes me really anxious too, because I hate being jostled, don't know how to stay out of people's way, and am the last person likely to spot an empty seat so if there's any competition I never get one.
This time I ended up standing next to the two seats that had "Priority Seat" and a little picture of someone with a cane over them, the ones that can't be reserved so I knew they weren't, the ones that you are supposed to give up to a disabled person if they need them. Normally I don't pull rank on this even when I'm visibly disabled -- I figure my disability doesn't affect mobility or standing, though if people are insistent on offering me and my white cane a seat (which they sometimes are, bless them) I am grateful for it.
But this time, this time my disability actually just had affected my mobility and caused me pain, and I did not want to stand up all the way to Manchester and I spent a good few minutes wishing them to always find Legos underfoot and people getting their names wrong. Both people were utterly (I might say pointedly, but I don't know if that's projecting) absorbed in their phones the whole time.
I spent a few more minutes berating myself for not asking them to move so I could sit down. I knew I wasn't going to. I was ashamed of being too ashamed to. I was also, if I had to be honest, still suffering the physical after-effects of all my anxiety as well as the mental ones: I was drained, and a little shaken, and had to spend a whole minute making sure I wouldn't cry or that my knees wouldn't buckle under me from sheer last-straw-ness.
Attempting to get myself back on some kind of even keel, I texted James (who been making sure I was okay already, of course, and who I'd been reassuring and hopefully seeming like I was coping). "I hate being blind and the way it makes everything an obstacle...I don't want to ask for [a seat meant for disabled people] because I'm already embarrassed enough."
I surprised myself by seeing these words come out of my own head/fingers. I'm not usually one to go "I don't want to be disabled any more" but at that point I didn't see how I could bear this for the rest of my life. It was a scary and a miserable moment.
It didn't last. But maybe it will help me be less troubled when someone else says they don't want to go blind.
Another thing I've not said, and wouldn't say, is how sad and hurtful I find his terror at going blind (which is a possibility though, as I understand it, not likely now that he has crowdfunded money for the treatment. Don't get me wrong: I live in terror of losing any of my sight and I think it's pretty normal to expect that anyone would.
But his implication that his life would be over, and the "he won't go blind!" celebrations at the success of the crowdfunder left me feeling a little hurt and sad. I remember the original blog post including something like "I'm a writer, so my job depends on me not losing my sight" and I'm thinking ...actually that'd be one of the easier careers to adapt to? you don't even have a commute! which I immediately felt bad about.
It's not fair because I'm at a totally different, much more matter-of-fact, point in this journey of disability. It helps me that I've never been able to see more than I can now so I think this is normal. And of course assistive technology is no picnic and yes I'm approaching this from a very social-model "being blind is no big deal!" perspective which, yes, if we lived in a perfect world but since we live in one that disables us for our accessibility demands, yeah it is just easier and better and nicer to keep the sight you have.
Of course I'm happy that someone isn't going to go blind. But I wish I could find a way to be happy about that without having to be sad that I'm living a life most people would dread -- and I'm really sighted for a partially sighted person! And yet...
I was rushing for a train home on Sunday evening, tripped over a roadworks sign or pavement A-board that had apparently fallen over in the hideous winds we'd had earlier in the day. Lying flat in the dark and rain, it was totally indistinguishable from the sidewalk and my foot just caught the edge of it... So I spent a minute or two hoping I hadn't torn my trousers too badly (I hadn't) and that my phone, which had flown out of my pocket, hadn't ended up in the road (it hadn't, I just couldn't find it for a while (perhaps because it, like everything else around me, was black and shiny!)).
I got up, with my elbow and knees and hands stinging, determined that I didn't look obviously dreadful, and shuffled gingerly to the station. I was sort of glad no one else was waiting on the platform, and tried to calm myself down. As always happens when my sight causes me some kind of problem, my anxiety had gone absolutely through the roof, so I tried to calm my breathing down and not cry.
On the train was the first time I'd been in any reasonable kind of light since I fell, and I could see that while my black trousers were covered in mud and my hands were scraped and dirty, I was apparently passing for normal. At least I wasn't obviously oozing blood or anything. Though my knees felt like I was, but I didn't want to roll up my pant legs and look; I saw no point in showing the grossness to the other people on the train, especially since I didn't want to touch anything until I washed my hands.
Off the train at Huddersfield I headed for the toilets, where two people were standing in front of the hand dryers in such a way that I couldn't get around them to the sinks. They knew each other and were chattering away, eventually about how they didn't think the dryers were working very well. I estimated that they'd been standing in front of them for approximately a year, long beyond the time I'd have given up, shaken the water droplets off my hands, and fucked off out of the tiny bathroom. That they didn't is enough to make me believe telepathy is impossible, because every fiber of my being was telling them to do precisely that. A mumbled, dispirited "excuse me" got me nowhere over their chattering, and unable to do any more I just stood there. Eventually one noticed me looming I guess, asked a question that meant I could say "can I just get to the sinks," and moved about a centimeter so that I still had to squeeze past her huge bag to get to the sinks, with a little "sorry" as I plowed through, which I immediately regretted -- what did I have to be sorry for? -- but I'd said it in the kind of social-lubricant way that's so popular in both the culture I've come from and the one I've moved to, where you say "thanks" in shops when you're handing over the money.
I washed my hands, assessed my knees (one very bloody, one less so), finding nothing better to clean them with -- as the chattering women had observed, no paper towels -- I wiped the blood away with my hand, like a kid that wants to pretend they haven't been picking at a scab, washed my hands again and went to get on my train.
The train was rammed; more people than seats. I ended up shoved along in a kind of chaos as the few remaining seats that had just been vacated were snapped up, mostly by people that were already on the train but with a few barging past me to their reserved seats. This always makes me really anxious too, because I hate being jostled, don't know how to stay out of people's way, and am the last person likely to spot an empty seat so if there's any competition I never get one.
This time I ended up standing next to the two seats that had "Priority Seat" and a little picture of someone with a cane over them, the ones that can't be reserved so I knew they weren't, the ones that you are supposed to give up to a disabled person if they need them. Normally I don't pull rank on this even when I'm visibly disabled -- I figure my disability doesn't affect mobility or standing, though if people are insistent on offering me and my white cane a seat (which they sometimes are, bless them) I am grateful for it.
But this time, this time my disability actually just had affected my mobility and caused me pain, and I did not want to stand up all the way to Manchester and I spent a good few minutes wishing them to always find Legos underfoot and people getting their names wrong. Both people were utterly (I might say pointedly, but I don't know if that's projecting) absorbed in their phones the whole time.
I spent a few more minutes berating myself for not asking them to move so I could sit down. I knew I wasn't going to. I was ashamed of being too ashamed to. I was also, if I had to be honest, still suffering the physical after-effects of all my anxiety as well as the mental ones: I was drained, and a little shaken, and had to spend a whole minute making sure I wouldn't cry or that my knees wouldn't buckle under me from sheer last-straw-ness.
Attempting to get myself back on some kind of even keel, I texted James (who been making sure I was okay already, of course, and who I'd been reassuring and hopefully seeming like I was coping). "I hate being blind and the way it makes everything an obstacle...I don't want to ask for [a seat meant for disabled people] because I'm already embarrassed enough."
I surprised myself by seeing these words come out of my own head/fingers. I'm not usually one to go "I don't want to be disabled any more" but at that point I didn't see how I could bear this for the rest of my life. It was a scary and a miserable moment.
It didn't last. But maybe it will help me be less troubled when someone else says they don't want to go blind.
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(no subject)
Date: 2016-02-23 08:34 am (UTC)Apart from that, though, you are awesome and I love you. I hope your knee gets better soon.
(no subject)
Date: 2016-02-23 09:12 am (UTC)And thank you, you're awesome too and I love you. :)
(no subject)
Date: 2016-02-23 12:01 pm (UTC)(no subject)
Date: 2016-02-23 10:02 am (UTC)(no subject)
Date: 2016-02-24 09:06 am (UTC)(no subject)
Date: 2016-02-23 01:50 pm (UTC)Having recently faceplanted in the street, you have my full sympathy on the fall. Those reactions are pretty much a one for one match to my own. I didn't have to resort to a station toilet, thankfully, I could stagger to the friends' house I had been trying to reach anyway.
And been there, done that in front of the priority seats several times over the years, and I have the crutches to make my priority-ness much more apparent. I have ended up asking people to move, one occasion sticks in mind, three seats, two businessmen, one punked-up girl, no prizes for guessing who moved and who spent the rest of the journey studiously ignoring me....
(no subject)
Date: 2016-02-24 09:50 am (UTC)This is what I always think is so frustrating about people (like my mom...) who think it's "sad" or whatever when someone "has to be in a wheelchair." Everybody I know who uses one considers them an improvement, independence...it's a problem only when society fails to accommodate them, which of course happens unfairly often, but the chairs themselves symbolize a lot of positive things for the people who need them.
There's a distinct gap between 'wouldn't actually wish it on someone, but not actually the end of life as we know it' and 'Wah, the sky is falling!'
Yeah, it's helped me a lot to have all my disabled chums say things like this. I struggle with the balance between being supportive of people dealing with health challenges and then feeling like I'm a tragedy they want to avoid at all costs. That'll teach me not to make everything about me, though! ;)
(no subject)
Date: 2016-02-24 01:18 pm (UTC)Breaking everyone's kneecaps and asking 'are you sure about that?' would probably be cruel, but effective....
(no subject)
Date: 2016-02-23 07:56 pm (UTC)(no subject)
Date: 2016-02-24 09:52 am (UTC)(no subject)
Date: 2016-02-23 07:59 am (UTC)Re your friend - it is ok to feel hurt by his comments and reactions. You don't have to either rain on his parade about his good health news OR twist yourself into being OK that he is venting lots of disablist bullshit in the process.
I 💜 you and I really hope your week improves pretty damn quick.
(no subject)
Date: 2016-02-23 10:19 am (UTC)I've gotten my stressful eye hospital appointment out of the way, the sun is shining, next WI meeting tonight, so my week is looking up!
(no subject)
Date: 2016-02-23 06:12 pm (UTC)I have complicated feelings about the not-wanting-to-be-blind thing. In my 20's I had a detached retina as a result of lattice degeneration (which is itself a complication of severe short-sightedness) - it happened very slowly and I didn't actually notice that i'd lost a quarter of my visual field in that eye till it was picked up in a routine eye test. If it had been left I would have lost the sight in that eye - but the surgery to fix it made me more short-sighted...
I know how to be short-sighted and I could cope with that. It would have been harder for me to cope with losing the sight in that eye altogether - so I am glad it didn't happen. I'm sure I would have learned to cope if it had. But I would have gone through a period of mourning - and of being more disabled before I learned to live with the impairment. Being more short-sighted is not disabling for me so it was totally the best option - even though I can imagine that for someone who had 20/20 vision beforehand it would have seemed like a loss...
(I'm also glad the surgery techniques have moved on and I didn't end up with facical scarring like Gordon Brown!)
Also on the ward when I had the surgery most of the other paitents had had retinal detachments that had happened suddenly (usually after a blow to the head) and they mostly found their (mostly temporarily) reduced visual fields harder to deal with than I had because I had time to adapt to the change slowly.
(no subject)
Date: 2016-02-23 10:21 pm (UTC)Friend stuff sounds very hard, for those of us with lifelong stuff and so on it can be maddening to see "become disabled" people acting like it's the end of the world. It's not and they will get over it, grieve, relearn life etc, but yes social model and argh.
Train stuff sounds vile. We don't have a culture where the people sitting in those disabled seats IF not disabled are encouraged when rammed to say "If anyone needs these, please let me know" which might not have been enough for you but would be a shift. I think when train is rammed people don't even think about those seats being priority, they just grab em...
I haven't asked for priority seats before either, I have been offered seats as I must do a good line in looking shitty on public transport. I have sometimes pondered the "script" "Hi, if you're not disabled and needing that seat, would you mind letting me have it, as I am disabled and need it" *flash disabled railcard* but have never got up the balls cos Britishness and yeah awkward.
(no subject)
Date: 2016-02-24 11:19 am (UTC)