I can’t wait to see a picture of it once it’s done… if you’re posting one, that is :)
And congratulations on your divorce! 2 days ago
I can’t wait to see a picture of it once it’s done… if you’re posting one, that is :)
And congratulations on your divorce! 2 days ago
You’re an incredibly caring and sensitive person, I know you’ll be a good sister too. I hope she is able to tell the rest of the family about her problems, though. It is quite a lot for you to carry on your own.
I hope weaning her off the medication goes well… gosh, it must bring a lot of mixed feelings if she’s been on them so long. 4 days ago
You are both kind and sensible. I hope when you comfort your friends in real life you bring actual baby bunnies to give them. You’d be a comforting hero, a Mary Poppins-like being.
Seriously though, I really appreciate what you said. I can’t hear what you said enough. 5 days ago
I started this log in a private document on my laptop. It dwindled after about week three, but I’d like to keep up with it. Maybe 43Things can lend it some energy.
For ease of copying and pasting, these are the questions I want to reflect on:
What has been the theme for the week?
Which goals have been the easiest to complete, or have gone well?
Which goals have been the hardest to complete?
Points of procrastination:
Mid- and long-term goal progress report:
What to focus on next week?
I am lucky because…
I had a similar goal when I first started 43Things, but it turned into waffle and became enjoyably and confusingly aimless. This time I want it to be aimful: it should help me with pacing and keep in mind long term goals, and attempt to set a theme and focus for the coming month.
March: See Joe, work towards nominating June for an award, and phone friends more regularly.
What has been the theme for the week?
I’ve been working on and fussing over the surprise for my friend. It has taken a lot of energy and preoccupation. It was very exciting when people finally started sending contributions (it was more than I get through the post at Christmas), but at the end of the week I ended up getting ill and depressed. I feel really down in the dumps. I hope I get enough of myself back to enjoy it once it is done and ready to go.
Which goals have been the easiest to complete, or have gone well?
I’ve started using To Doist again, for ticking off basic goals like taking medication and so on. I guess it has been a sign of how ill I am that the basic things have begun to slide, such as sticking with the three litres of water. However, I have been keeping up the core exercises. Maybe it’s the depression or maybe I am getting used to it, but I don’t feel so hasty about this goal anymore (a positive thing). I have increased the time for one of the exercises, which is good. I’ve also been reading more.
Which goals have been the hardest to complete?
Stretching, and phoning friends. I really want to talk to people but feel drained of energy physically and emotionally.
Points of procrastination:
When someone sends me a message that is really thoughtful and means a lot to me, I always procrastinate on replying to them. I feel bad about doing that and am working on being more pro-active.
Mid- and long-term goal progress report:
I joined a website called Lang8 after my friend told me how it has helped her learn Korean. She said her first entry was something like, “Hello! I like pizza! I want pizza!” and showed me her most recent one. Paragraphs of solid Korean. On Lang8, native speakers read what you’ve written and correct it – sentence by sentence – and give you hints and tips and stuff. It’s really good. I made a list of things I could write about in French, and realised that my input far exceeds my output. I can take in French sentences, but creating them is another matter.
I’m going to use this website to revive the old goal of writing something in French everyday for three weeks. It is a good opportunity.
I just don’t know how to do my body. I keep thinking about that. I don’t know how to do my life.
What to focus on next week?
I am hopefully getting a haircut, the first in… hmm, at least 6 months, probably closer to a year. Then I need to finish the scrapbook if I can, and pack to go to Joe’s house. I haven’t seen him since September! That is a light in the tunnel. If I don’t finish the scrapbook (the surprise for the friend), then I will finish it when I get back.
I am lucky because…
When I get really down, I remember an image I found on Pinterest emblazoned with the words, “The things you take for granted someone else is praying for.”
I am lucky because I have food and heating, and I have loads of hair for the hairdresser to cut off. I am lucky because I have Joe as my boyfriend.
I am grateful for Chloe for telling me about Lang8, and to my mum for buying me new jeans as a surprise to cheer me up. I am grateful to my dad for saying he’ll drive me to Joe’s house, and for all my friends who leave me the kindest messages to help me feel better. I am also grateful to the people who contributed to the scrapbook, and allowing me to do this thing for my friend. 5 days ago
That’s really kind of you to say. 6 days ago
Also, it is not your job to accommodate him after this. Your feelings are valid. He cheated on you and then threatened you about taking you to court, trying to beat you down. If he wants to do right by the baby he has to do right by you too: you and your little one are a package. Don’t let him try to convince you otherwise. If he loves her he needs to show you respect, he needs to take responsibility for his actions.
He is trying to manipulate you by trying to make you be the reasonable one. He cheats and YOU get told, “Be civil, the baby needs both her parents.” Thanks a lot.
If he can’t match you in maturity and respect then it is highly doubtful that healthy boundaries can be established. You need to do your bit (which includes putting yourself first sometimes), but he needs to meet you halfway. 1 week ago
Fuck, the sister has no right to tell you to be civil. He didn’t only cheat on you, he cheated on the baby as well. 1 week ago
That’s an interesting observation. There are many kinds of intelligences, but people can be surprisingly cynical about intellectuals. High intellectual ability is often viewed as something that is elitist and corrupts innocence, or as something that spoils wonder and reduces empathy. Hence why so many super villains are also super brains I suppose.
There’s an author called Susan Jacoby who I’ve heard on various podcasts talking about modern anti-intellectualism that you might find interesting. She’s on YouTube here, if you want to have a look.
I like your smartness. You are one of my favourite writers on this site because of how smart you are and how you analyse what goes on around you.
Don’t forget Beast. He was smart and huge and gentle. 1 week ago
It’s funny how much certain sentences are needed. I needed to hear that: I do know that I know he is wrong. What he said was ludicrous and hurtful, and brought up a lot of mixed feelings. I knew he was wrong and yet worried he was right, or something would happen and I’d feel blamed (even if no one said it).
And you’re right again about how my mum deals with her health and stress is up to her.
Yesterday I found out I won the benefit appeal, which is fantastic but my mum’s reaction unnerved me. She said she was so relieved because now I don’t have to rush into anything and “don’t have to make the wrong decision.” (Whatever that means.) No matter how likely it was that I’d win (very), or that there were other options if I didn’t, she was locked into her stress and couldn’t hear what anyone said to her about this (especially with her husband affirming her anxieties). Hopefully she’ll be able to relax a bit now and look after herself, and I’ll get a bit of space too. It’s just really shaken my trust in the both of them, as if they see me as a stupid, naughty and disappointing child. 1 week ago
Luckily I have a trip to see my boyfriend planned in two weeks. Hopefully I will be able to detox while I’m there! 1 week ago
Your sympathy and understanding gives me strength. 1 week ago
Especially my family. I need to stop caring what other people think of me, especially my family. Some people it is very much worth caring what they think of you: if you are safe in their eyes you can climb higher and transcend yourself.
Last summer, my mum and her husband decided I should move out and live in a small apartment they’d found in a village. I’d never been to this village and had expressed (in response to hints) that I didn’t want to move there, especially as I wanted to move out with my boyfriend (I am 26 after all). One evening they sat me down and said how strongly they felt about me moving to this place, that it was perfect and that I was making a big mistake not going. I said I would be willing to look but I needed to talk it over with Joe because we’d agreed we wanted to live together. The husband began rolling his eyes and shouting. He said several times, “It is pathetic that a 26 year-old needs permission from her boyfriend.” He eventually yelled, “I AM NOT HAVING YOU GIVING YOUR MUM ANOTHER HEART ATTACK.” Which was a brutal thing to say (the stress of her heart attack was the thing that triggered me to relapse, something I still haven’t recovered from).
More things happened that I won’t go into here.
Months later, and they are still very keen on me moving out. The whole thing makes me feel very weak and ill and unempowered. When I added the goal Move out to my list, it was a radical and exciting thing to do. Now it just… isn’t.
A couple of weeks ago my mum started emailing me, my boyfriend, my dad, and my boyfriend’s parents about us moving out again. After a few exchanges, Joe decides to put his feelings out there about what has happened in an attempt to be open and move forward (his dad proof read the email and said it was a good idea to send). My family don’t talk about feelings and work through problems like that. My family use feelings as weapons. They were flabbergasted by his email. In an attempt to stick up for him I said, “The village conversation really had a strong impact on us.”
The husband starts rolling his eyes again and said, “We were SUGGESTING. We were just making a SUGGESTION.”
I said, “He wasn’t trying to upset you. He didn’t say anything maliciously.”
He said, “How can you say that? Can you imagine if I said that to your mum’s mum? I wouldn’t even say it! I’d apologise immediately! He should apologise immediately!”
The conversation continues, and eventually I had the courage to go back to the village conversation and remind him of what he said to me about my mum. (At this point I had to look away from his face completely as he was rolling his eyes over and over and snarling with his tongue in his lower lip.) As painful as it was I had been giving him the benefit of the doubt and said, “You were shouting so maybe you didn’t mean to say it or realise what you’d said…”
He cut me off and said, “You ARE going to give her a heart attack again if you continue like this. I’d appreciate it if you stopped trying to make everything more stressful OR YOU WILL GIVE HER A HEART ATTACK.”
He shouted it a few more times.
I can’t sleep for thinking about it. I lie awake and it goes round and round my head. I worry about her. I worry she’ll get ill or die. I feel so worthless. The worst thing about what he said is that I can’t even answer back. My mum lets him say these things and was annoyed with me that I was upset. (I don’t know if she agrees with him or just enjoys him being passionate about her.)
He says these things (or she becomes intensely annoyed with me) and then they both say, “You get so upset, we can’t tell you anything.” Then they get more stressed. The last time I asked her about houses I walked into the front room where she was sat on the sofa and said, “I was just wondering what you had in mind about the money.” She snapped and said, “Do you think I go scheming behind you back or something!?” I said no, I didn’t mean it like that, I just wanted to know what she thought. She ranted for a bit and I said, “I wasn’t accusing you of anything,” to which she replied, “You come in here asking me these question and then start accusing me of feeling accused!” She went on for almost fifteen minutes this way about how upset she was. I could feel my throat closing. By the time she asked me what was wrong with me, my throat was too tight to answer. “We can’t ask you about anything,” she said, “YOU get upset? Why don’t you think about how I feel?”
Look, I do love my mum. I love her a lot, but it is so much harder being ill and dealing with these dysfunctions (I don’t mean that personally: these are just dysfunctional behaviours).
My mum told me tonight that she had some negative blood test results. Immediately I just wanted to keel over and go to sleep. I started writing an email to her husband in my head. I can’t imagine ever confronting him about it realistically, so I could only imagine the end of the email (which I wrote down and have pasted below). I’m not going to send it.
I previously had decided not to show any of this on 43 Things, but I just can’t deal with it on my own anymore.
I am not writing this email for an apology. I don’t think you would apologise and would instead write back with excuses and justifications, but even if you did apologise I would not forgive you.
I don’t forgive you for saying something that cruel.
I don’t forgive you for being so protective that you would choose to escalate the stress and take it out on me.
I don’t forgive you for planting those unfair ideas in my head.
I don’t forgive you for planting those ideas in my mum’s head, and for making her (and me) fear for the worse.
I don’t forgive you for the disrespect you showed me, for repeatedly rolling your eyes as if it were clever and as if I were so far below you.
I don’t forgive you for putting my mum in the middle, and using her as a shield so that I can’t stand up for myself. You might be willing to put her in the firing line but I am not. You either know that I am not (which is why you do it to manipulate the situation and get power over me) or you know that if I did stand up for myself I’d have to go through her, which you would not tolerate (which, again, is manipulative, dishonest, and cowardly).
I don’t forgive you because I do not deserve to be treated in that way.
I don’t forgive you because you escalate the stress phenomenally while pretending not to, and you have the audacity to blame me.
Finally, I don’t forgive you because we can’t talk openly and honestly about any of this. You are a genuine threat to my health (as well as hers) and any attempt to talk to you (and your rolling eyes) isn’t even worth it. The boundaries in our relationship are so poor that forgiveness would be meaningless in this situation. I believe any apology from you would be a politician’s apology: it would be attached to so many strings and you would find a way to come out on top.
Whenever I picture your face now, I always picture it with rolling eyes or your tongue thrust in your bottom lip and your nose in a snarl. You don’t respect me, but at least respect my mum enough to take a long look at yourself and think about how you can support her rather than making things worse.
It is frankly unbelievable that you think that Joe telling you he doesn’t trust you is so terrible and yet you can sit there and think it perfectly fine to tell me (several times) that I am threatening my mum’s life. It is also typical of the way you think, however: that one standard exists for you and another for everybody else. Do you think it is any wonder that Joe might lack trust?
Don’t you dare think that you are the only one who cares, and don’t you dare imply that if something happens it is all on me: you are the one who shouts, you are the one who catastrophises, and you are the one who could calm her down rather than affirm her worst fears.
She thinks my dad and his wife are calm because they don’t care, and that worrying and panicking about someone is love. It is not very subtle the way you encourage her to feel powerless, so that you can step in and be the big manly hero.
I can hardly sleep for what you said, and she is getting worse. You have put that burden on me, and it makes me feel like shit. I can only assume that this is what you wanted because, despite what my heart might fear, my head knows what you said was irrational and designed to manipulate. 1 week ago
When I am especially low on energy, I have a tendency to come to 43Things and stare at my goals. It is either because I want to do things but can’t, or I’m checking to see if there is anything I have somehow accomplished while lying brain fogged in bed. “Do I speak French yet? Alors, non.”
During my goal to worry less, I counted this kind of behaviour as part of the worrying.
There is one goal I have made progress on though: that of being organised. Part of being organised means knowing how to pace and manage my energy. Six or more months ago I kept a list of goals that I wanted to achieve every day. Given my health, most of these goals are simple and probably wouldn’t make it onto most people’s list (e.g. washing yourself and other basic needs). Naturally I want to engage in my goals as much as any healthy person does, so my routine list started to get longer and rather stretched.
God damn it, I want to learn to play guitar and all that other stuff.
The last two weeks I have cut it right back. The first week I dropped all goals, and on the first day of the second week I made a short list of the things I could relaxedly do in a day: exercise, contact a friend, and read a bit of my book. For the rest of the week I stuck to just doing these things and nothing else. The idea is to add one extra activity a week and see how it goes…
Graded exercise was a big step in the right direction, but the problem with pacing is that there aren’t many objective measurements you can make, or really visual hints and tips. I am hopefully assuming that I wasn’t pacing very well before, in case I can learn to pace better and end up feeling better and eventually doing more. But what if I was already pacing as good as I could possibly be? Am I doing the thing? Is this the thing?
I wish real life was more like a video game and I could hit the targets and collect the coins and level up. A friend of mine shared a post on Tumblr that said something to the effect of, “Recovery is the least linear thing ever and anyone who tries to convince you otherwise needs to fuck off.”
I want to do the thing that makes it linear.
On the plus side I am on my way to becoming a cracking artist. 1 week ago
I’ve seen Brene Brown on YouTube many times, I’d love to get hold of one of her books.
Your list of things you procrastinate on is very interesting. It is a good level of self-awareness and makes me think that maybe I should start a procrastination journal for a month or two, and see if I can spot any reoccurring themes.
Thanks for the luck! 1 week ago
This is mentally harder than the previous exercises I’m used to. Not because of the exercise itself, but because of the desire to go beyond my limits. It is innately desirable and satisfying to push past your own boundaries. I need to refocus my attention and sense of satisfaction onto pacing well rather than pushing hard.
Move out of the way, mind goblins.
Previously I was focused on my arms. There is something about focusing on the stomach that triggers this drive to push. I don’t even read fashion and fitness magazines and yet this conflict is strongly influenced by them. “Flat Abs Fast! Do it NOW!!” This domino knocks into the next one, which is the dream that one day I really could wake up to find that all I and my friends have to do is to push ourselves every day, past our illnesses and into health.
I only ever lifted weights once a day for my arms, but what’s-his-face the physiotherapist said that if you’re really sticking to your limits then you should be able to do the exercise several times a day. That helps. Doing more makes me feel like I’m doing more, and I don’t have to splurge my energy out in one go, wrecking any chance of improvement. It does is still tempting to get the tape measure out once a week… I vented in doodle form. 1 week ago
I have so much admiration for you for doing this. I’ve never come across your 43Things before, but anyone who donates a kidney to a strange is remarkable.
I hope that anyone who follows me and sees this comment, clicks on your goal and cheers the heck out of your list (hint, hint). 2 weeks ago
I have thought and learned a lot about procrastination over the past year. Sometimes you can control it, sometimes not so much (such as when you are genuinely overwhelmed), and sometimes what I thought was procrastination turned out to be something else, like lack of energy or re-prioritising.
According to research, most procrastination comes from avoiding discomfort. The discomfort is often subtle and hard to recognise you’re even feeling it. The discomfort can be minor and physical (e.g. it is too cold to shave the cat, I can’t be bothered) or conceptual (e.g. what if my cat shaving technique isn’t good enough and I fail? I can’t picture the outcome. What if people judge me?) or emotional (e.g. I’m bored, and I’ve put of shaving the cat for so long that thinking about it makes me feel guilty and weird).
The task might require discomfort (such as getting up off your bottom) so you avoid it, and then you feel discomfort about avoiding it so you avoid it even more to avoid the discomfort of feeling the new emotional discomfort and the original discomfort combined.
This is why you tend to procrastinate more if you are already experiencing a lot of discomfort (e.g. you’re chronically ill, you’re experiencing insomnia, you’re on a diet, changing jobs, in a crap relationship, and so on). You are also more likely to procrastinate if you are surrounded by a lot of comfort, because it is so easy to just… stay… cosy. Mmm.
In order to stop procrastinating, you have to do things that make you uncomfortable.
You also have to stop doing things that make you comfortable, especially when those things involve zoning out or compensating for the avoided task. When you feel bad about not doing something, you engage in another task like cleaning or organising or apologising or watching TV to make yourself feel better. You can manipulate this maladaptive coping technique by turning it into something know as structured procrastination, where by you procrastinate on a project that isn’t very important and use your avoidance of that goal to drive you towards tasks that need to be finished. This only works if the goal that you are avoiding both causes anxiety and discomfort, but also isn’t something that you actually have to or want to do.
In the past, I knew my procrastination was an inconvenience to others. In the last few months I have tried to organise a surprise project for a friend. The friend also has ME and was diagnosed with cancer last year. I set up a secret group of Facebook, added mutual friends, and they added their mutual friends. All in all, over 80 friends of this person have been added. 22 of them said they would definitely like to help with the project. Eight of them have followed through. Ten days to go.
I remind myself to just go with the flow with this goal, but it is stressful receiving messages from people berating themselves for not doing anything and then watching them to continue to procrastinate. Berating yourself is another factor that drives procrastination: it is a compensatory action, and either makes you feel like you have done something or/and increases your anxiety. Research shows that those who forgive and are kind to themselves and accept responsibility are much more likely to move on and finish or start the discomforting task. Those that either berate or just excuse themselves (i.e. only forgive and are kind and leave out the responsibility) are not so likely to finish or even start the task. Out of my little group, it does seem as though that the more apologetic someone is the more likely it is that they will drop out.
Sometimes it is hard not to be annoyed.
All of this has made me realise that procrastination has a huge social impact, not just a negative personal one. Knowing that I have to move towards discomfort has helped a lot when dealing with tasks I procrastinate on. Overcoming procrastination has taken on a new sense of social duty (which can be a dirty word nowadays). It wouldn’t just benefit me to procrastinate less: I owe it to other people.
And the cat.
As with any new muscle, you need to exercise your tolerance of discomfort. Even when a task seems completely personal and not at all social, you are much more likely to succeed in your social goals and duties (and generally be less annoying) if you practice facing any point of procrastination.2 weeks ago
Yesterday I was feeling really bad. I had the stabbed-in-the-heart feeling. Voodoo doll of depression.
To look back in gratitude and appreciation at the past, to be engaged in the present, and look forward with hope at the future… that is happiness. The future and the present look really bad through the misery goggles right now, but thinking about my completed goals does give me strength. I’ve decided to write as many How I did it entries as I can, and try to think of some satisfying short-term goals to feed the fire. (Most of my goals are long-term, and won’t get ticked off for a year or more.)
I also downloaded a do-ba-de-do that is supposed to help you reduce stress and refocus on more positive aspects of life. It is a series of games. You can play the demo version of it here for free. I have been playing it for the last 30 minutes and do feel as though some of the depressive smog and fatigue has lifted. One of the games involves clicking on happy faces in a crowd of sad and angry faces, and another is a word search of happy words. You have to stick to a time limit and score a certain amount of points to move to the next level, which is harder. I don’t know if the game itself will help very much, but it was a good distraction. The concentration required for the games gave me a break from my mind, which is beneficial in and of itself. 2 weeks ago
How I did it: I have exercised inconsistently and unskilfully for years, always making myself much worse and unable to progress. My teenage-self did what any teenager would do, and made comparisons between the bodies displayed in magazines (displayed much like any other product they were advertising) and the body I actually had.
While looking for affirmation from body-positive websites I often saw (and still do see) the message, "Just so long as you're healthy, that's all that matters." Ack, I felt like a failure even for them!
This has been a goal that had alluded me for a long time, but, two years ago, I finally cracked it… It is definitely one of the best things I’ve ever done for myself and my body. I have been struggling with depression lately, and this achievement is one of the few things that makes me feel hopeful.
Exercise and persistence for someone with a genuine intolerance to exercise needs a complete redefinition. It is hard but necessary to redefine the two in a way that makes proper pacing become satisfying and fulfilling.
Proper pacing means not going past your limits and avoiding a boom-and-bust cycle. It can take a lot of willpower to stop pushing yourself in this way, and even more self-awareness to know when you’re doing it.
Exercise can refer to a whole range of activities. At first exercise for me meant tidying my room, generally moving around the house, and having a shower or a bath (the latter often being difficult activities for POTSies). When I built up tolerance doing daily I went onto what could recognisably be called exercise.
On a forum I frequent, one of the members was asking for advice about exercise. They exercised irregularly but as best as they could, and ended up suffering and in a lot of pain for hours afterwards after each session. This person asked for advice, and this was my reply:
I was told that if I exercised and had a flare up (an increase of symptoms), then I was doing too much. You need to start out insanely slow. For example, if you want to lift weights you might start by lifting a 2kg weight ONCE… and then stop. Lift it once every day. The next week you lift it twice. Proceed slowly like this, and if you get a bad reaction go back to the previous week when you didn't have a reaction. If you are severely ill you might even start out lifting your hands with no weights in them. When you get up to ten lifts, lift for ten for a week or more before upping the weights and dropping the number of repetitions by half. You have to think sustainably rather than thinking about "getting in shape." You have to redefine exercise completely.
It feels like a weird way to exercise, even de-motivating, but this is probably the only way you will see progress. (Keeping a progress chart helps loads.) You kind of have to sneak up on your body and exercise without it knowing that's what you're doing. You need to help it to get stronger before it gets tired or achy, which means being incredibly gentle. Gentleness is especially important in the beginning. Later on (i.e. a year or two later) you might be able to test yourself a bit more without a flare up, but if you do flare up then you need to back off.
(Part of being able to test yourself after this time isn’t just because you a stronger, but because you are wiser and will trust the process. In the beginning it can feel a bit, “Blah, what’s the point? What’s the harm in going five more rounds?”)
Do half of what you think you can do. My physiotherapist told me that if I don't think I could do the same exercise (or routine) two or three times a day, then it is too difficult. You should feel like the "workout" is something you can do several times a day, even on bad days, and on days when you have other activities. For this reason, you should do the exercise every day. If you can't do it every day (including on bad days as stated) then you need to do something easier (you don’t have to do it on your worst days, though).
It might sound tedious, but the only way to get "there" is to get there is to go really slowly or else you won't get anywhere. It usually seems like a good idea at the time to do as much as you can, but if you don’t pace yourself you will undo all your good work. It is a really slippery slope.
Start off with one movement. Do it for a week and build on it like that. For example, my physiotherapist told me I need to strengthen my core muscles due to EDS. He told me to start off by holding a plank pose for five seconds, and to stick with that for a week or two. Every week or two add five more seconds to the hold. It is tempting to build up faster than weekly, but by doing it in weekly stages you will be able to better gage if it is making you ill or not. Remember: you have to trick your body and be sneaky.
You can have different exercises for different days, but just stick to one or two things each day.
What helped me maintain my motivation for this plan is the thought that even if I only lifted a 2 pound weight once every day for a year, that is still 365 repetitions and a total of 730 pounds lifted. A three pound weight lifted ten times every day for a year is 10,950 pounds lifted.
As I said, this is the advice given to me as an ME patient, as well as someone with EDS and POTS. I hope it was helpful, though! Read how I did it… 2 weeks ago
I really liked reading your story. You’re right that media has such a big impact on how we see the world spiritually, even cartoons like Caspar. I think stories about magic (Grimm’s and especially books about wizard schools) had a big effect on my world view.
I like what you said about the soul not being a thing. People talk about themselves in very strange ways. We talk about having minds, having bodies, having souls, having brains, and having all kinds of things… as if we are somehow separate from our brains and bodies and souls and minds. When talking about the soul this is especially strange, as if it is both the sum of who we are and yet not who we are at the same time – that it is something that can be lost or taken away from us (this usually only happens in fantasy novels or dramas, but it is an idea that exists in our culture nevertheless). 3 weeks ago
Thanks for your sympathy, CrunchyBread, it does help when others see it for what it is! 3 weeks ago
I don’t usually review products, but this is pretty nifty.
I bought this pill dispenser above a few weeks ago. It is pretty cool and has helped a lot in helping me take my medication on time (you have to be really prompt with one of them).
You can separate each of the capsules (labelled Sun through to Sat), and attach them to a timer. The capsules each have a little flap with a hole in them which means you can thread a whatsname through and hang the capsule from your keys or purse or whatever.
You probably wouldn’t hear the timer in a noisy room, and I sometimes don’t hear it when it is in my pocket. Generally though, it is really good. (If you buy one and want to keep the letters nice, paint clear nail polish over them or else the nice sharp black font will scuff off as soon as you look at it.)
(I’d mark this goal done but I know it will become more of a challenge when the dosage is increased and the side effects likewise increase.) 3 weeks ago
I don’t know if the picture is actually true, but it accurately reflects the cynicism many disabled people in the UK have about the DWP (Department of Work and Pensions). A few years ago there was a news story on BBC Radio 4 about a blind man who was told during an assessment that he probably could see more than he let on, and therefore should go to work. The man insisted he was completely blind.
“I have been watching you very carefully,” said the assessor, “and I know that you can see.”
He asked her to hold out her hand. She did so, and he removed both of his eyes and gave them to her. They were made of glass.
It’s a hilarious story but also shows a dark truth. A lot of people don’t have anything that blatant to show of their disability. Had the man been Deaf or chronically ill, what then? The assessor’s word is just worth more.
Every few years I have to reapply for benefits. Last year was one of those years, and the Job Centre contacted me saying that I needed to see them for a consultation. Usually when this happens they affirm that I am too ill to work, but that if my circumstances change then they have resources available to help. Have some leaflets, that kind of thing.
Last year, though, it was more complicated than that.
“You are obviously too ill to work, but we think it is a good idea for you to be in the back-to-work group anyway.”
“What does that mean…?”
“Well, you have to show that you are working towards employment. In the support group you are given benefits no matter what, but in the work group you have to earn the benefits. You do this by engaging in work-related activities.”
“But I’m too ill to do any work related activities. Just coming here today for ten minutes could take me several days to recover from.”
“Well, for most people work-related activities include gaining skills, or actively looking for jobs. We might go over their CV or practice interview questions. For you, your activities can be just trying to get better.”
“My cardiologist said it is unlikely I’ll get better, and any improvement could take years.”
“That’s okay! You just have to say you’re trying. Then you can come here for regular meetings to say that you have been trying, and what job you are working towards.”
“How regular is regular?”
“For some people it can be every few weeks, for others it can be every six months. Obviously you’re ill so you could come every six months and tell me what job you’re interested in.”
“But I can’t do any jobs.”
“You could tell me your dream job. What is your dream job?”
“I don’t know. I’d like to be lots of things… I could say anything, though. I could say firefighter or sumo wrestler or Paralympian. I could say anything.”
“That’s right! That’d be fine, and I’ll write it down. There are lots of good things about being in this group. We help people get jobs.”
“You already said that I can’t work.”
It is totally and absolutely meaningless. I came away feeling bewildered but okay, until I found out that being in the work group is means tested: you can only have a certain amount of savings in your bank account to be able to receive benefits. For able-bodied people who would eventually be able to work again, this makes sense. But for disabled people who can’t work, that money – once it’s gone – is just gone.
Benefits are a poor means of income. You don’t get paid much, and living with a disability is costly. Savings really matter. Because of new Government schemes to get people back into work, the DWP are shuffling people around to meet their targets. The public are told that many people have been helped to break their dependency from benefits, but a lot of disabled people are like me: “trying to get better” and pretending to be aspiring sumo wrestlers or whatever.
It is shambolic. A friend of mine told me that, during her consultation she was advised to “look for jobs but not really.”
I have sent several letters appealing the decision, including evidence from my doctors, and am currently awaiting a form with four questions on it. If I pass the four questions, then I can go back into the support group and keep my savings.
I have absolutely no idea what the four questions will be. After the first appeal letter I received a form asking if I was sure I wanted to go ahead. The form included a list of ailments that exempted me from the work group. It was extreme. It included things like, “Is unable to turn a page of a book.” “Can’t give or receive basic and urgent communication (e.g. if there was a fire or other danger).” “Can’t touch own shoulder.” “Defecates self.”
The letter with the questions was supposed to have arrived on Monday, so, naturally, we’re still waiting. 3 weeks ago
I am currently enjoying a Coursera course on the history of soul beliefs. The course is filmed in a university lecture room, with the students who took the original course. It begins with the students being asked to come to the front of the class room and talk about what they were taught to believe about the soul.
What were you taught to believe about the soul, dear readers? The rules are to write only what you were taught to believe in the past, and not what you believe now.
My parents are both atheists. I remember asking my mum about what happened when people died when I was four or five. It was just before bed and she said that when you died it was like falling to sleep. I didn’t sleep properly for a very long time after that!
I had a lot of questions: Does everyone die? Yes. Even you? Yes, but only when very old. (I was sceptical that anyone would ever age ever again now that I had been born. It was awful to think that my mum would get old, and absolutely unimaginable that I would). How do you die? Your heart stops and you fall asleep. Then nothing. Forever.
My younger brother, who was always much more pragmatic than me, accepted this information calmly. I asked him about it, but he didn’t understand what the worry was.
I developed insomnia and would lie awake holding my heart thinking what a traitor my heart was, trying to imagine nothingness and foreverness. I pictured it as standing on the rim of an infinitely large bowl, with black foreverness on either side. In my arms I held my heart. You have to try to balance on the rim but you could only balance for so long before your legs got tired or you slipped or got too old. The bowl developed a subtle and malicious soul of its own. It wanted you to fall off and die. (Later, I would learn about different organs and asked what would happen if they each stopped working and which should I worry about the most.)
I had a book about children who lived in clouds, and spent a lot of time outside in the garden. I thought about the cloud children a lot and thought all the plants and insects could hear my thoughts. Because my parents didn’t give me any dogma, I developed my own sense of what it meant to have a soul and to be in the world. I felt part of the world, as if there was no divide between me and the rest of the world. It was as if we all had one soul, and everything had different souls all at the same time.
It was lovely, even divine.
When I started school my new teacher told me about God. I had never heard about God before, and I remember the first time I’d ever heard of it. There was a man visiting the class who wore a black dress and said there was a man in the sky who was called God, and he made everything and wanted to be all our best friends. Everything about this situation was dumbfounding. By looks on my friends’ faces, it was clear that it wasn’t just news to me. I put my hand up and said something to the tune of, “Is that like the Easter bunny where you kind of believe but not really?”
The vicar said it was absolutely true. It was the most important thing in the world to believe in God and to be his best friend.
After school I told my mum, “Why didn’t you tell me the most important thing???”
“Oh, we don’t believe in that in our house,” she said, which was reassuring but also confusing. What about outside of the house?
Death continued to bother me a bit. Not much, but a bit. My mum told me she did believe things to placate me, like reincarnation. That made sense with my World Soul idea. I thought that maybe everybody would eventually have experienced being everyone and everything else. I don’t know what I would have told me if I were in her shoes. I’d want to be honest, but avoid the sleep comparison.
When I was older I learnt about Christianity from other teachers and from a very religious best friend. One teacher in particular saw it as her duty to convert her pupils (this is England, not the United States). My friend told me how grown ups who die not believing in God would go to hell. She had a lot of strong opinions and told me a lot of what I should believe. She said that I should make my mind up before I grow up, or it would be better for me to die as a child and go to heaven than die as an agnostic adult and go to hell. Hell was worse than a forever of nothing: it was a forever of burning.
Obviously this was deeply troubling, and started a second cycle of sleeplessness. I didn’t know if I believed or didn’t believe, or what I was believing or not believing in. What if I thought I believed but it turned out I was believing in the wrong thing, and so didn’t pass the heaven test? What if you have to go to church to be taught how to believe?
I did believe in a soul, which was the meishness in my body and my hopes and dreams. My old beliefs about the world soul still hovered over me, and I secretly believed I would be the first human to ever learn to fly. I don’t think I saw my soul as separate from my body.
I didn’t understand why God and Jesus would send my parents to hell (plus I had recently found out what God did to Jesus, his son, and wasn’t entirely secure in the idea that I’d want him as a second dad anyway).
We are constantly being taught and influenced by the people and ideas around us as to what kind of beings we are and what kind of universe we live in, but I’ll stop my story there.
What’s your story? What were you taught?3 weeks ago
How I did it: Last year I discovered and got hooked on a website called Coursera. It is a platform where universities can provide free short courses for anyone with time and access to the internet.
It was an interesting learning experience, for more than just the subjects: not having been in education since I was about 11, it was interesting to observe how I responded to the lessons and essays. I am and always have been a perfectionist. It is a source of both pride and stress, and I realised after completing several courses that I need to learn how to organise and more focus that perfectionism more carefully (not everything benefits or deserves it, though perfectionism can definitely provide drive and depth to certain subjects or experiences).
The courses vary dramatically from each other, exploring everything from creativity to quantum physics. Some feature a tutor talking to a camera and nothing more, while others employ animations and interviews and multiple participants. Some of the lecturers haven't quite figured out how to use the medium yet though, leading to frustrating homework assignments or annoying exam questions (such as questions that refer to something incredibly specific from a lecture you might have watched weeks ago, with no textbooks for reference). Others talk way too fast or monotonally. Some tutors are absolutely charming and engaging. I got something out of each one though, and you can revisit the archieves for some time after. Wesleyan University's social psychology course (which I highly recommend) was so well equipped that at the finish a lucky student was selected to meet the Dalai Lama!
The feedback from the other students can be truly uplifting. Some of the courses use weekly quizzes, others a mix of quizzes and exams. The exams are graded by other students (of which there can be tens, if not hundreds, of thousands). If the guidelines set by the instructors are thoughtful and well planned, comments and grades are usually fair and friendly (poor guidlines seemed to have the effect of encouraging unfair and unfriendly responses, such as marking down those who have English as a second language). The best ones made me feel like this.
Most courses provide a Coursera certificate on completion in the form of a PDF document with your name on it, while others can provide you with a certificate from the university (such as Harvard or Yale) that they send to you in the post for a price (which, if you have the cash, might make you feel like this).
While I should spend less energy on the website this year, I look at the certificates and the grades I managed to get and I think I did really well. I definitely surprised myself. Read how I did it… 1 month ago