Tag Archives: Disability

Changing Shape

From the moment my leg left my body, it became medical waste. It’s not even that anymore, I’m sure. It’s… What is it? My leg existed in space and time as part of me and what I understood myself to be and it is no longer there. Amputation has made me think about who I really am. It has been at once a challenging and life affirming experience. The amputation of my leg continues to affect my identity and how I think about myself.

I am an amputee now. There’s a word for it and everything. I have resisted joining any kind of support group, organisation, or society whose members are amputees and define themselves as such. I’ve never been much of a joiner and I’ve never been one for consolation. I’m sure these aspects of my personality make my life harder than it needs to be. I believe life should be hard. That is both a blessing and a curse. I never say, or even dare think, that life isn’t fair. Nobody ever promised it would be.

After my surgery, I felt something I wasn’t prepared for; I was immediately self-conscious. In the beginning, this was debilitating. I didn’t want to see many people post-op when I was in hospital. There were only a select few who I allowed into my room to begin with. I had a room to myself. When I got out of hospital, I found it hard to muster up the courage to go out anywhere. I stayed at my dad’s place for a few weeks and the idea of going home was entirely daunting because I knew I would have to go out and be seen by people and they would see that I only have one leg. I was perplexed as to why I should care. After all, how people see me had never bothered me before.

That I would feel weird and self-conscious about my stump is, even to me, absurd. People have always stared at me. They have always noticed my wheelchair. They have always said really stupid stuff, both well-meaning and out of cruelty. I was so used to that kind of attention, I had unconsciously trained myself to block out the vast majority of it. When I joined the world again after my surgery, for a long while I could not get past the idea that everyone was staring at me. So many people stare at me when I’m out and about and I notice them now because I’m looking for it. I realised after a while though, that I probably wasn’t getting much more attention than I’ve always had, it was just that I felt uncomfortable with my new identity as an amputee and I was projecting that onto the people around me who had always looked.

Before my amputation, I was scared all the time. I couldn’t do anything much because I didn’t have the energy for it or I was too sick or I was waiting to get sick and I was scared. I’m still trying to get used to the idea I might not have to be hooked up to life saving drugs in the near future, that I might not be a patient again for a while. The thing that I thought was going to kill me is gone. I am no longer chronically ill. That sentence, that thought, has just this second dawned on me. It’s all taking a lot to process. There’s so much involved. The good and the bad consequences of my amputation do not occur to me all at once and I still can’t answer simply when people ask me if I’m glad I did it.

I’m struggling to know what to do with my time now. I got used to being a patient quickly; mind you, I’d had a lot of experience in that area already. I’m still an occasional patient but it’s really not impacting on my life in a significant way. I’ve realised only recently how small my life is. Actually, I think I’ve been aware of the walls closing in for a long while but it matters more now because I have time on my hands that used to be taken up with being a patient and with being scared.

I think I can probably be more than a patient who has disabilities and chronic illness now. I’m tentatively testing the boundaries of what I’m capable of again. I used to do that a lot. It was how I lived my life. I achieved things I didn’t imagine I’d be capable of because I was happy to accept that life is hard and that if there’s a wall I had to find a way over or around it. The thought that I might be able to get back up over that wall again after so long is at once terrifying and exhilarating.


Standing Out

Following a transfer from Wellington to Hawkes Bay Hospital, I moved back from city to town nearly six years ago now. Though I grew up here, it was a real culture shock. I still don’t feel I fit this place at all. I never knew what it felt like to fit in until I left home, so I guess it’s no big surprise to me I feel the same now I’m back.

I spent my weekend in Wellington. Despite feeling I was home from the moment my parents dropped me off at my hostel for my first year of university, I have a complicated relationship with the place now. Visiting Wellington in the years since I’ve been away, I always felt like I was coming home. My heart broke when I left. I was completely head over heels for all of it and I didn’t know how I was going to carry on outside of the capital’s boundaries. I felt my identity was tied inextricably with the place and I fitted in. Now though, I’ve got kind of used to standing out in a smaller town and I’ve begun to value myself as a person outside of the norm. I’m very comfortable with who I am this time around. I think Wellington helped me a great deal in that regard.  I finally felt I was going home when I got on the plane bound for Napier at the end of my short holiday.

I stand out not only because of my wheelchair but also because I tend to style myself in an androgynous way. I say style, I mean jeans and t-shirt with the addition, on a cold day, of a sweatshirt or jersey. There are plenty of women who dress similarly but I also wear my hair very short and don’t wear jewellery or makeup. I look like a certain kind of lesbian, which is fine and good because I am a certain kind of lesbian. I’m a lesbian who likes to be comfortable. I tell you, guy’s clothes are a revelation. They are so much more comfortable and, regardless of what the label says, you can wash them however you damn well please and everything will be fine.*

In all seriousness, I don’t feel I have much of a choice in standing out. I’ve tried wearing more feminine clothing, I’ve tried wearing make-up, I’ve tried wearing jewellery. I don’t feel like me when I’m wearing all of that stuff. I feel like I’m playing dress up. I’m pretty sure if I tried wearing a dress or skirt now, I would feel as if I were wearing drag. I like being a woman but I also like expressing my masculine side. Actually, it’s not about ‘like’. It’s a choice between being comfortable in my own skin or not.

It goes without saying, I can do precisely nothing about standing out because of my disability. Most of the time that doesn’t bother me, though I would say I have an easier time accepting my sexuality than my disability and a lot of that is down to how I choose to present myself and how much choice I have in the matter.

My disability and my sexuality and my gender are all amplified to the extreme now I’m no longer living in Wellington. I could be a bit anonymous in the city, though if I wanted to stand out, I could. I spent a while in my 20s wearing sort of post-punk garb; leather jacket, facial piercings and spiky hair that was alternately, purple and black, blue, green, and bright copper. I loved how I looked. I’ve always been a bit vain, despite my obvious physical disabilities.  Conversely, if I felt like it, I could blend into the crowd. ‘The crowd’ in cities tends to be so diverse now, it doesn’t matter if you look different because there are a whole lot of other people who look different as well and when all these different people are thrown together, nobody stands out too much.  Unless you are really trying to and there’s plenty of scope for that.

Growing up outside of a city, it’s very easy to feel your differences are exclusive to you, that you are the only one. It can be a very lonely feeling. I feel it still, now I’m back to where I started.  That feeling of isolation is tempered though with the knowledge there are others out there like me and no matter how different I am to those around me, if I speak long enough and listen intently enough to anyone, we might just find common ground.  The discovery that we’re not as different as we might have imagined is a powerful inroad to understanding and acceptance of oneself and others.

The biggest surprise for me following my weekend away is that while I enjoyed the trip, I really looked forward to coming home. One of the best things about moving back to my home town has been, though I feel and look different to most of the people around me, I’ve learnt to enjoy that difference. Standing out is a valuable gift that I might not have recognised if I’d stayed where I was.

*I take no responsibility for the outcome if you follow this advice. You should never blindly follow the advice of a blogger.

The Sounds I Make When I’m Alone

The sounds I make when I’m alone have started to annoy me to the point of distraction.

I have a cold right now, or a throat infection, or both. Oh, woe is me! I’m teeming with micro-nasties that result in a reedy wheeze every time I breathe out.

I’ve tried to breathe more shallowly. This doesn’t really work. The wheeze is slightly lighter but not gone and I get light-headed quickly because I’m a shallow breather anyway.

When I was in intensive care as a young teenager, the nurses had to turn the machine off that monitored my breathing. The alarm just kept going off all the time and the alarm was, well, alarming; overkill I’d have thought. They told me to breathe deeper and I would and the morphine would take over and I’d forget where I was for a second and the nurses would have to tell me to breathe deeper, giving me a terrible fright and I would have to wait for the morphine to kick in again.

When I lean over to pick up my dog or one of his toys off the floor, or when I put food into his bowl, I’ve started making noises that I have no real control over. “Oy” is the sound I make when I’m leaning down, or coming back up from leaning down. “Aye aye aye,” is the sound I make when I pull a muscle or find myself moving much slower than usual.

There are other micro sounds that are creeping into my repertoire, too. Now that I’ve noticed that I make these noises, I’m more and more irritated by myself. I don’t seem to be able to stop them, these annoyingly noisy tics; I only notice them.

Having hydrocephalus, I’ve also had tinnitus for as long as I can remember. Actually, that’s a lie. I remember the exact moment when it started. It had clearly been there before, but the moment an adult asked me when I was a young child, “Do you get tinnitus?” and then, when prompted, told me what tinnitus is, it was like magic – a dark, noisy magic. Bam! or rather ‘bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz’. When I think about it or whenever there are no other sounds around to drown out the buzzing going on in my head or in my ears – somewhere in that general vicinity, I don’t really know how it works – the continuous buzzing of high and low frequencies fills the silence.

I just want me to shut up. Perhaps that’s why I find I’m reliant on audiobooks and music and other auditory amusements. I’m trying to drown myself out. There was a time, in the not very distant past, when I was trying to drown myself out for other reasons. I couldn’t handle the thoughts in my head. I was trying to quash the creeping darkness. That felt like a losing battle, really. It’s easier to deal with noises than thoughts. My head is a more pleasant place to be now.

Tonight there’s a party happening on my street. It’s muffled enough that it sounds like it’s at least a block away. Later, people from that party will probably trip and stumble past my house on their way home or to town and there will be laughing or yelling and shouting. My neighbours sometimes ask me if I heard some disturbance or other the night before. I don’t know why I say no because I almost always hear it. Such welcome distractions from the sounds I make when I’m alone never go unnoticed.

Talking Trauma

A problem with trauma is it’s difficult to find a way in. It is hard to talk about it in any meaningful way. In my experience, medical trauma and its effects aren’t discussed. Most people don’t want to talk about it. Trauma is isolating and lonely. I have to do something; reach out to someone.

Trauma is a rebellion against the limitations of rational thought. It is an absurd response to an event or events that are so terrible, they cannot be meaningfully or rationally processed. A traumatising event is a break in the narrative. That’s how trauma feels to me.

I’ve found it extraordinarily difficult to get my thoughts straight in the face of having been re-traumatised. When you can’t make sense of anything, it can be difficult to watch those around you going about their lives, business as usual. I don’t know how long it’s going to last, this ‘episode’, this break in the narrative, this trauma. I hope not too long. I’m feeling so sorry for myself and I’m unreasonably angry at myself for this indulgence.

Over three weeks ago, I had two wisdom teeth extracted. I now have a dry socket infection, which is making being awake, let alone doing anything much, frankly, bloody awful. I’ve barely left my house in three weeks. I’ve hardly spoken to anybody. I hate myself when I’m sick and I do punish myself for that with extreme isolation.

In the days before my oral surgery, I did my utmost to keep it from going ahead. I spoke to a nurse, an anaesthetist and, on the day of surgery, my oral surgeon, about how I really didn’t understand why the procedure was necessary. Before that I had obsessively researched wisdom tooth extraction trying to find a reasonable, scientific explanation that I could use to build a case as to why I didn’t need my teeth removed. At my request, I was assured that the oral surgeon would come and talk to me ‘on the day’ to assess whether I really needed to have it done.

I was in a hospital gown lying on a well starched bed, staring at the clock on the wall, when the oral surgeon came in to see me. A literal interpretation of laid back was all I could manage at the time, as I sunk into pillows lined with plastic and covered in more white, starched linen. The surgeon said, judging by my X-rays, that removing my remaining wisdom teeth was a good idea to avoid problems in the future. I relented. This was happening.

As I was wheeled into the operating theatre, I held it together remarkably well for somebody who was experiencing flashbacks to previous medical traumas. I did cry as the anaesthetist prodded my hands and arms in search of a vein, on terrain that is decidedly hostile to needles, but not because I knew it would hurt. Most needles don’t really hurt.

The human body is amazing. A symptom of my medical trauma is that my veins now disappear whenever they know a needle is going to be anywhere near them. When a vein is finally found that appears viable and the needle inserted, my veins have become adept at collapsing on contact.

I cried until I was no longer aware of my surroundings. I batted my tears away with my free arm until I passed out. Seeing the cannula, smelling the sterilising alcohol, staring up at lights that look like the underside of an alien spaceship, all of these sensory cues trigger memories of so much worse. You don’t need to know about that. I don’t need to write about it. Not today.

I was out for dinner with family last weekend following a four-hour filmed opera, which I went to on my own as there were no takers for what some apparently consider a novel form of torture. Eating is still uncomfortable but I can no longer look at soup or pudding without a reflex nausea and I had to get out of the house. Sitting at the restaurant I was tired and distracted by the infection in my mouth and how terrible it was making me feel and how awful I felt that I had chosen to inflict myself on others.

I stared at my menu. It had a clear typeface and was well formatted. I couldn’t read it. I could tell that it was written in English but that’s as far as I could get. None of the words meant anything to me and I was overwhelmed. I chose two dishes that I had eaten previously. I had enjoyed them but, more than anything, they were familiar. I didn’t know how to say that I couldn’t read the menu. It didn’t make any sense to me, so I couldn’t begin to explain it to them. Trauma is like that. That’s why it’s so hard to talk about.

Transport Matters

This morning I read about a terrible situation that several people with disabilities find themselves in, all of whom drive heavily modified Skoda Yetis:  http://www.stuff.co.nz/motoring/news/9843463/Disabled-drivers-fume-over-loss-of-transport  Due to potential safety issues, 8 warrants of fitness were revoked in December by the New Zealand Transport Agency (NZTA), after the cars were deemed to be noncompliant and therefore, not roadworthy. The Skoda Yetis were each bought for $85, 000NZ, so every individual car and modification process has been a huge investment for owners and/or funding agencies.

These car owners are in virtually the same position as lawbreakers who have had their licenses suspended. Their independence has been stripped from them and they are completely reliant on others to transport them from place to place. The only difference is the modified Skoda Yeti owners have been given a one off subsidy of $5000 for transport costs until the matter has been resolved. It feels to me like these car owners are being treated like this is their fault. Of course it isn’t; the cars were certified roadworthy before the purchase of their vehicles and now, after purchase, this status has been revoked. This is just not good enough. If this was happening to able-bodied people, there would be a public outcry.

Has anybody from the parties involved in this sorry mess, apart from the car owners themselves, ever tried to take public transport in a manual or electric wheelchair?

As I have outlined in a previous blogpost (Living Is Not A Luxury: https://chellehope.wordpress.com/2013/11/28/living-is-not-a-luxury/), bus transport can be extremely difficult for certain people with disabilities and there are a number of factors outside of a passenger’s control that might potentially make travel by bus a real nightmare, including: steep ramps that only work well on certain curb sites; lack of turning ability inside the bus and allocated spaces that can be awkward to get into and out of; busy buses that just don’t have the room to carry a person in a wheelchair; the discomfort on those same busy buses for people with disabilities and, perhaps the most affecting issue, driver attitude and willingness to work with the passenger who has a disability to ensure they have a comfortable, hassle-free journey. This is by no means an extensive list and it will of course vary from person to person. If any number of these issues factor into a person’s journey by bus, it can make the whole experience really quite traumatic.

There can be difficulties, too, in travelling by taxi, for a person with a disability. For those who cannot transfer on their own into a car, or who find it too difficult, a TMV may be their only option. A Total Mobility Vehicle (TMV) is a van with a wheelchair lift and space to carry the wheelchair user without having to transfer out of their wheelchair. TMV transportation can be great but again the passenger is reliant on a good and competent driver who knows what they are doing. Often, depending on where you live and the company you use, this option comes with a large flag-fall surcharge which, if you are not going far, can actually cost a lot more than your journey. In my experience some drivers/companies do not meter their TMV fares either, so the passenger has to accept a previously agreed charge or a seemingly arbitrary fare at the end of the journey. It’s not fair but if this is your only available mode of transportation, you have to accept these terms.

Not everybody who has a physical disability needs to use a TMV if they are taking a taxi. If, like myself, you are able to transfer relatively easily into a car on your own, you may be able to take a taxicab. Again, there can be difficulties here too, and again these difficulties can be exacerbated by drivers who make it very clear that you are a problem for them. There is nothing to stop drivers from starting the meter when you get into their cab. I’ve had some who have started the meter as soon as they stop. Though my wheelchair is easy to fold up and take apart, many drivers have struggled over the years with it. It can take a long time to get it into the boot or back seat and if the meter is running the entire time, again you can end up paying more for this waiting time than you might have for the entire journey.

The article that brought this issue of the noncompliance of modified Skoda Yetis to my attention highlighted the experience of one driver who states that he’s never had a problem with his modified vehicle and that the safety of the car has never been of concern to him. One can believe a vehicle to be as safe as they like but the onus is on the various transport agencies that we have to deem every vehicle roadworthy. That is as it should be. Road users rely on those assessments to keep us safe and to minimise harm, so I do understand that while the New Zealand Transport Association (NZTA) is sympathetic to the plight of these car owners, they have a responsibility, both ethically and legally, to ensure the safety of vehicles. What cannot be allowed to happen though is for vehicles to be certified roadworthy and then for that certification to, in effect, be made null and void after purchase when a warrant of fitness is revoked due to noncompliance issues in the manufacturing process. This is not the point at which these vehicles should have been deemed potentially unsafe and not roadworthy.

First, there’s the issue that some of these drivers have been driving their vehicles for many months on New Zealand roads. Now, if these vehicles have been assessed after purchase as noncompliant due to a manufacturing issue, the owners of the vehicles have themselves, as well as their family and friends and other road users been at undue risk the entire time that vehicle has been on the road. If, on the other hand, these vehicles are and always have been perfectly safe but have nonetheless been deemed not to be compliant to NZTA standards, it rather makes a farce of the entire compliance/safety issue, doesn’t it? Either way, the owners of these cars, all of whom have physical disabilities that make it much more than a bit of an inconvenience to seek alternative modes of transportation while this whole mess is being sorted out, deserve an apology and compensation at the very least. Though nothing is going to reverse the lack of independence, not to mention the stress caused by uncertainty that these people are still going through.

I’m not going to go into who I think is responsible or who I think should resolve this issue. That’s for others to decide. It doesn’t matter to me and I would guess it doesn’t matter one bit to any of these car owners either. They just want to be able to drive their cars to work, to the shops, to drop their kids off at school, to the movies…  A one off payment for transportation costs doesn’t begin to cover what these people have been through. That’s what matters. A good and swift resolution to this problem would have been good. This should never have happened but it has and it needs to be resolved: Now.

Chronic Illness, Welfare and Trolls… Oh My!

Recently an online friend of mine shared a harrowing experience on her blog (http://writehanded.wordpress.com/2014/03/13/fuck-winz-yes-i-said-it/). My friend has a chronic illness and right now is unable to work to support herself financially and so has to deal with WINZ (NZ’s social welfare dept.) on a regular basis. It has not gone well thus far. She has handled the situation with grace, tenacity and bravery. Unsurprisingly, my friend’s blogpost inspired a number of terrible people (trolls) to comment on her situation. It’s hard enough dealing with WINZ. Harder still is coping with and processing the pure bile that spews forth from those who refuse to acknowledge any difficulty and disadvantage that a person might have in this life and that society is responsible for helping those people who need it most.

Don’t Read The Comments

That’s very good advice that should be applied to almost anything you read online but in this case it was important to read the stories of others who had been through similar experiences and were frustrated, struggling, impoverished and feeling helpless and hopeless.

That my friend’s blogpost resonated with so many is a pretty bad indictment of our welfare system. The trolls were outnumbered by these stories but unfortunately it tends to be the trolls that stick out like a pustular boil on a sore thumb. Don’t read the comments: Yes. Fair enough in most situations. When you want to affect change though, it’s important to know what people are thinking. Societal attitudes are part of the problem and can also be a part of the solution. That’s what social change is all about.

If You Can Use [Insert Social Media Tool Here] You Can Work

People with chronic illnesses can feel marginalised to the point of invisibility, especially if we are unable to work. Blogging and social media is one of the ways in which we can feel empowered. We can tell our stories in our own words and in our own time. We can write when we feel up to it physically and psychologically. Crucially, we can get feedback, suggestions, guidance and support from those who read what we write. For many of us, it is the first time we have been able to share our innermost thoughts in any kind of coherent way and it can be the first step to discussing issues that affect us in the real world. We don’t have the time or the energy to talk through everything that has an impact on us in our day to day lives and there might not be anybody there to listen if we did. Blogging is a lifeline for some of us. It can make us feel supported and less alone. Think about that next time you make a thoughtless comment that we should just stop whining, get a job and get on with our lives.

There are those who seem to think that if we can tweet or use Facebook or blog, we can work. It’s true that these things can take up a lot of time. I would consider myself a heavy social media user. Before the advent of social media people might have said: If you can walk the dog, you can work. If you can go to the pictures, you can work. If you can sit in a cafe and drink tea, you can work. There is, expressed here between the lines, the disturbing notion that those who are unable to work should sit at home and watch TV all day, like prisoners in their own home. Though perhaps if you can watch TV, you can work. I don’t know. Those who take this attitude, apart from being downright mean, misunderstand completely how chronic illness works.

Most people who live with chronic illness have their good and bad days. On a good day, you might be able to get out and see friends. You might be able to walk the dog. You might be able to sit in a picture theatre for a couple of hours. You might on very good days be able to do a full day’s work. Some people can experience quite long stretches where they could potentially work part time or even full time. The thing with chronic illness though is you don’t know when you will be at your worst again. You don’t know when you are going to have to spend the day in bed because you’re in too much pain to get up, let alone go outside. You don’t know when you might get an infection or some other illness related to your condition that might put you into hospital and out of action for a long while. That’s why when you tell us that if we can use social media, we can work, it rather gets on our wick. Please stop that.

You’re Just Lazy

Those of us who have chronic illnesses internalise the idea that if we are not turning up to a place of work at least five days a week, we must be lazy. I felt this myself for many years. After receiving my first class honours degree, I started looking for jobs. I worked part time for a number of years in a job I loved. I did other freelance work, too and I volunteered. I wasn’t busy enough. Everyone around me was busy and talked all the time about how busy they were. I felt so much guilt that all of my time was not occupied by work and I also felt left out. I wanted so badly to join in. I’ve always been extremely prone to a sort of impenetrable existential boredom so I was looking for constant distraction from that, too. At around this time I started to get sick a lot with potentially life threatening infections and my body was starting to show the first signs of osteoarthritis, too. I was 24. You can age a lot faster when you have a physical disability like spina bifida. A chronic illness might age you as well.

It wasn’t until I tried for a career in teaching that I realised I was never going to be able to work in a ‘normal’ job. This was the turning point for me. I knew I wasn’t being lazy. I had to accept the very real possibility that I might kill myself trying to work. For some, it’s not just a case of finding the right job. We need to accept that some of us are incapable of holding down a job and that the consequences of trying to do so may include making a person sicker. We need to accept that forcing a person into work may indeed, for a small number of people, lead to death. That’s not being dramatic. It so nearly happened to me that I question every day how I’m still here. I was so sure that I was going to die. I had been on a full time placement for three weeks. Three weeks working full time is how long it took for me to nearly lose my life in pursuit of a career. So next time you feel the urge to tell someone with a chronic illness to get off their lazy behind and get a job, have a bit of a think about what effect that might have on a person.

If you stopped feeling so sorry for yourself and put that energy into work, you could get a job

This is often said to people who have been brave enough to share that being chronically ill has led to depression or that depression is a chronic illness for them. Well, they are right about one thing: depression takes a lot out of you. It takes a lot of energy to be so depressed that you can’t leave the house. Only the most ignorant person with their head firmly in the sand doesn’t know now that depression is not about feeling sorry for yourself.

Often people assume that those of us who are unable to work are sitting around feeling sorry for ourselves. Actually, many of us are good and productive members of our community. Some of us volunteer, we support our friends, we are valued family members, we have hobbies and interests and we care about our communities. We do these things because everybody needs meaning in their lives. Rest assured, when you tell us to get over it and stop feeling sorry for ourselves, you are part of the problem, not the solution.

What’s your problem? What’s wrong with you? What’s your disability/impairment/condition?

Just a quick tip: Only the last version of what is essentially the same question is acceptable and only when it’s relevant to the conversation. Even then it’s up to the person just how they want to answer. In the context of employment, I and others with disabilities and/or chronic illness get very used to followup questions about how our illness or disability might affect our ability to work, like it’s really anybody’s business. We are very aware that these questions are asked so that you can assess our suitability for employment and judge us accordingly.

Most of us experience a long period of utter devastation, sometimes even leading to depression and anxiety, as we go through the long process of coming to grips with the fact that we can’t hold down a job because our health will either be compromised severely if we do, or our health will get in the way of being able to do our job; often it’s a combination of the two. Many of us have tried over and over again to work in various different jobs and each time it doesn’t work out, our self esteem, self worth, in fact our entire sense of self, takes a battering. Eventually some of us get to a place where we are ok with who we are and we accept our new circumstances, though many of us would still give anything to change them. You should know, it’s not up to you to decide how our chronic illness or disability affects our ability to be employed. Through experience, we have become pretty good at judging that for ourselves, thanks very much.

Pretend Like You’re A Good Person

We are not idiots. We know some of you are judging us. We know you will probably use our stories against us. We know other things too: We know that we don’t have to justify ourselves to anybody. We know what we are capable of. We know that our stories will help some to find strength and others to discover a way through. We are living our lives in the best way we know how. We will not apologise to anybody for having to accept support from the government or anybody else. It’s not our fault. We didn’t ask for this. If we could change things, we would but many of us can’t. If you are judging us, you are changing nothing and you are helping nobody. You can and should change your attitude and your thinking. Pretend like you’re a good person for a bit. You never know, it might stick.

Idle Pleasures


I started my day with the comfort and familiarity of hot tea and toast. I had to have a couple of slices from a supermarket loaf that has being languishing in the dark recesses of my freezer, untouched, since I started making my own bread recently. The contrast was too much to bear through a second meal, so I made a loaf of bread in time for a late lunch.  I enjoyed a sandwich with the fruits of my labour, wrapped around some salami and cheese. The bread turned out well. That said, had it been made by anybody else, I would have thought it a mediocre effort at best. I am quite sure everything tastes better when you make it yourself. I don’t know if that’s the pride of having made something with my own hands or a delusion brought on by denial that something that takes so much time and effort might not turn out perfectly.  
While I was mixing and kneading and waiting for the all important rise, I listened to some frenetic jazz. It turns out Thelonious Monk is a great accompaniment to slow, methodical and precise bread making. I ‘discovered’ Monk earlier this year thanks to a wonderful Twitter mate who helps to keep me interested in what humans do to entertain themselves.

I’ve had some rewarding exchanges on Twitter today, as I do most days. I haven’t met many of these people but I know them on some level. Despite enduring sneering and general disdain from some of those who don’t use it, I couldn’t be more pleased that Twitter and I found each other. My mind has been broadened more by what I’ve learnt, experienced, read, watched and listened to on Twitter than anywhere else, perhaps excepting my university years.  Twitter makes me feel like I’m not alone.  There’s no shame in that.  I’m not sure I would have done nearly as well as I have, or if I would have adjusted as well in my move from city back to town, without Twitter.  When living an idle life, you must learn very quickly how to do two things:  1. Be alone  2. Seek the company of likeminded individuals in whatever ways are available to you.

I’m going to go and read a book soon. I’ve got a few on the go, so I might take a while choosing which one I feel like diving into, today. Although I’m still not very good at concentrating, I think I’m getting better at it. Especially since I stopped putting pressure on myself to be ‘well-read’, a process that could become the worst chore if I let it become work.  If there’s time, I’m going to look over a short story I started a while ago to see if I can improve on what I’ve written. Then I’ll have a think about where to take it next. If I don’t have time, that’s ok. At least I’ve written something today. There’s always tomorrow, which I’ve set aside as a writing day.  So far, writing for me is an idle pleasure and I hope it will always remain so.  That doesn’t mean I don’t take it seriously.  I would like to be published one day.  I hope that when I feel I have written something someone else might want to read, someone might read it.  If I never get published though, I will continue to write.  My primary interest in writing is to fulfil my own desires, explore my imagination and to see how good I can get.  I don’t really write for readers.

When it cools down a little, I’ll take Troy for a walk. It’s too hot just yet. It’s amazing how much I can make his day with two words: ‘Troy. Walk.’ To have that much power over a living animal’s ability to experience pleasure is a big responsibility.  I’d like to think he’s a happy little pooch. He makes me happy, so I owe him a lot.  By the way, if you would like to learn from a master how to be idle, get a cat.  Dogs are not idle.  That’s our fault.  It is up to us then to keep them busy and happy.

Later, after a dinner of soup and homemade bread, I’m going to a play. I was invited along by someone, so on this rare occasion I will have company. I’m looking forward very much to an evening out. I hope to be entertained. At the very least, I know it will make me think. I haven’t met a play yet that hasn’t done that for me.  When I get home, I dare say I’ll watch some trash TV or, more likely, watch a music or comedy DVD. Then I’ll fall asleep with a book in my hands and Troy curled up behind my knees.

I hated myself when my last-ditch effort at a ‘normal’ career didn’t work out; I mean really loathed. It wasn’t my fault. I tried so hard it nearly killed me, quite literally. That didn’t stop me detesting the sight of myself in the mirror.  Following a month in hospital, many months of visits from a district nurse and a move back to my home town to recuperate and pick up my shattered ego off the floor, I finally accepted that my health was going to get in the way of having a career every time, however much energy I expended on hoping for a different outcome.

I’m much more relaxed about my life now.  I’m still nostalgic for when my disabilities had little impact on my health. I still wish quite often for my old life back. I don’t bristle to the same extent now though when someone, probably well meaning and occasionally envious, exclaims how lucky I am not to have to work. I don’t measure success anymore by what a person does for a living.  It’s a relief in a way. I can concentrate on figuring out what might give my life meaning instead of attempting to distract myself from the inevitable meaninglessness of life, which is what I did for many years before I decided to relax into the experience. An idle life takes some getting used to and it takes a bit of work but it is well worth the effort.