There are many different aspects to living with the reality of a disability. There are some that you barely notice because you have been living with them for so long. Others you will never get used to. For instance knowing that there is a time delay between waking up and being able to get out of bed is normal. Knowing to make large meals because there are days when cooking becomes impossible is just a fact of life and doing roughly an hour of physio every day doesn’t seem like such a hassle when you have been doing it for 16 years.
However other things are much harder to get used to. I don’t think I will ever understand the people who deliberately walk in front of or kick crutches ‘just for fun’ and the difference in how people talk to you depending on what aids you are using, e.g. one crutch=normal, two crutch=embarrassment and overcompensation, wheelchair=being ignored or talked over, mobility scooter=being seen as an inconvenience with a low IQ. Even when it is places that you visit regularly with staff who recognise you their attitude still changes (except for the staff in the best pharmacy in the world who are simply amazing!)
The worst thing about disability though is how much it costs, physically, emotionally and fiscally. Physically being in constant pain is exhausting, nothing can change that and any drugs that relieve the pain make you even more exhausted. Not being able to do something that you could do the day before or even a few hours before is demoralising, the reality of waking up an wondering what you will be able to do that day and whether there is anything essential to do is terrifying. While needing to ask for help to do anything from cutting up the food on your plate to washing your hair to opening a bottle is humiliating. You learn to accept it as a norm eventually but you never really get beyond the frustration of not being able to cope alone.
Emotionally there is the issue of living in pain but still having to interact with the world. The only thing I can relate it to is the experience of being an au pair. I was left alone for a week with a 4year old and a 6 month old both with glandular fever (yep, babies get it too, it’s just not as noticeable because they are babies!) for the entire week I had two small children crying constantly in a 3rd floor flat half way up a mountain snowed in. Any parent out there can probably relate to the insanity of being awake basically 24 hours with sick children and then having to try to do anything at all. The smallest task or conversation can send you into a full blown meltdown and leave you a broken mess on the floor. Imagine instead of the constantly crying small children you have a body constantly screaming out in pain with every movement... you get the gist. Add to this the fact that you are unable to work (or even leave the house) for extended periods and it is clear that you will find a stir crazy person on the verge of a complete emotional breakdown who is likely to yell at you for saying hello or cry because you opened a drink without a 5 hour battle with nail scissors, kitchen aids and an electric drill (oh yes after the first 4 hours drilling a hole in a bottle to stick a straw in no longer seems insane, it’s just a shame I don’t have a drill, maybe I can use the saw on my pen knife to take the neck of the bottle off...). Finally add on the fact that while you are sitting home plotting new ways to get into your food and drink so as to attain some form of nourishment you are not going to work which means they really aren’t all that keen on paying you.
So fiscally as a disabled person there are a range of options open to you, several of which I am currently pursuing. The only problem in the council is incapable of communication so for each thing you apply for you have to fill out 60-80 pages of basically identical information. Doesn’t seem too bad but when you are filling out the same form for the 10th time you do kind of feel like yelling ‘why ask my nationality three times if you are then going to ask if I’m an asylum seeker’ (under a heading you must answer all questions on this page) yes I am in deed an English person living in England seeking asylum from the English who are of course trying to kill me! Oh and once you have managed to fill out all the forms there is the wonder of government and council reforms that mean at any moment you could become destitute. Basically it feels like you spend half your life begging for money, not a fun feeling at all and there is no challenge at any job I have ever had that is as complicated and bureaucratically impossible as proving to the same council that you are in fact yourself even though 10 different departments have the same information on you and are processing your claims as quickly as possible (‘we hope to be back in touch within 8 weeks, if you have not heard anything please call us’).
So yeah, disability, not so much fun! I remember being told that moving house and lack of job security are among the top 5 most stressful things in life, I’d have to say becoming disabled would top the list because chances are simply because you are now disabled you will have job insecurity, you will need to move to more suitable accommodation, your relationships will suffer and while you may not have a baby it often feels as though you need as much looking after as one and get as much sleep as a new parent with the flu. All in all disability is stressful, painful, time consuming, frustrating and generally hard work. I wouldn’t recommend it but now that I’m here I’m not sure how I would change it (well other than becoming rich first). The fact is that it is hard work and can have a horrific affect on every part of your life but it also makes you stop and think and recognise the things and people you do have in your life. I wouldn’t ask for it and if I could get rid of eve some of the pain or stop the debilitation here there is no question that I would but I can’t say that I would change it completely because this has been my life (label or not) since age 11 and to say I would change it would be saying that I want to be someone else. So I’ll get by, I’ll fill out the forms and answer the questions and be poked and prodded by the professionals and I will do the best I can. I will not let my disability control my whole life, I will be going back to work, I always have and there is quite a way to go before I would think about giving up. But for now it just a case of struggling through, it will get easier because there is no alternative.
However other things are much harder to get used to. I don’t think I will ever understand the people who deliberately walk in front of or kick crutches ‘just for fun’ and the difference in how people talk to you depending on what aids you are using, e.g. one crutch=normal, two crutch=embarrassment and overcompensation, wheelchair=being ignored or talked over, mobility scooter=being seen as an inconvenience with a low IQ. Even when it is places that you visit regularly with staff who recognise you their attitude still changes (except for the staff in the best pharmacy in the world who are simply amazing!)
The worst thing about disability though is how much it costs, physically, emotionally and fiscally. Physically being in constant pain is exhausting, nothing can change that and any drugs that relieve the pain make you even more exhausted. Not being able to do something that you could do the day before or even a few hours before is demoralising, the reality of waking up an wondering what you will be able to do that day and whether there is anything essential to do is terrifying. While needing to ask for help to do anything from cutting up the food on your plate to washing your hair to opening a bottle is humiliating. You learn to accept it as a norm eventually but you never really get beyond the frustration of not being able to cope alone.
Emotionally there is the issue of living in pain but still having to interact with the world. The only thing I can relate it to is the experience of being an au pair. I was left alone for a week with a 4year old and a 6 month old both with glandular fever (yep, babies get it too, it’s just not as noticeable because they are babies!) for the entire week I had two small children crying constantly in a 3rd floor flat half way up a mountain snowed in. Any parent out there can probably relate to the insanity of being awake basically 24 hours with sick children and then having to try to do anything at all. The smallest task or conversation can send you into a full blown meltdown and leave you a broken mess on the floor. Imagine instead of the constantly crying small children you have a body constantly screaming out in pain with every movement... you get the gist. Add to this the fact that you are unable to work (or even leave the house) for extended periods and it is clear that you will find a stir crazy person on the verge of a complete emotional breakdown who is likely to yell at you for saying hello or cry because you opened a drink without a 5 hour battle with nail scissors, kitchen aids and an electric drill (oh yes after the first 4 hours drilling a hole in a bottle to stick a straw in no longer seems insane, it’s just a shame I don’t have a drill, maybe I can use the saw on my pen knife to take the neck of the bottle off...). Finally add on the fact that while you are sitting home plotting new ways to get into your food and drink so as to attain some form of nourishment you are not going to work which means they really aren’t all that keen on paying you.
So fiscally as a disabled person there are a range of options open to you, several of which I am currently pursuing. The only problem in the council is incapable of communication so for each thing you apply for you have to fill out 60-80 pages of basically identical information. Doesn’t seem too bad but when you are filling out the same form for the 10th time you do kind of feel like yelling ‘why ask my nationality three times if you are then going to ask if I’m an asylum seeker’ (under a heading you must answer all questions on this page) yes I am in deed an English person living in England seeking asylum from the English who are of course trying to kill me! Oh and once you have managed to fill out all the forms there is the wonder of government and council reforms that mean at any moment you could become destitute. Basically it feels like you spend half your life begging for money, not a fun feeling at all and there is no challenge at any job I have ever had that is as complicated and bureaucratically impossible as proving to the same council that you are in fact yourself even though 10 different departments have the same information on you and are processing your claims as quickly as possible (‘we hope to be back in touch within 8 weeks, if you have not heard anything please call us’).
So yeah, disability, not so much fun! I remember being told that moving house and lack of job security are among the top 5 most stressful things in life, I’d have to say becoming disabled would top the list because chances are simply because you are now disabled you will have job insecurity, you will need to move to more suitable accommodation, your relationships will suffer and while you may not have a baby it often feels as though you need as much looking after as one and get as much sleep as a new parent with the flu. All in all disability is stressful, painful, time consuming, frustrating and generally hard work. I wouldn’t recommend it but now that I’m here I’m not sure how I would change it (well other than becoming rich first). The fact is that it is hard work and can have a horrific affect on every part of your life but it also makes you stop and think and recognise the things and people you do have in your life. I wouldn’t ask for it and if I could get rid of eve some of the pain or stop the debilitation here there is no question that I would but I can’t say that I would change it completely because this has been my life (label or not) since age 11 and to say I would change it would be saying that I want to be someone else. So I’ll get by, I’ll fill out the forms and answer the questions and be poked and prodded by the professionals and I will do the best I can. I will not let my disability control my whole life, I will be going back to work, I always have and there is quite a way to go before I would think about giving up. But for now it just a case of struggling through, it will get easier because there is no alternative.
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