SHAMING THE DISABLED

KNITTING

 I am glad to say that my muse is back. I have several sweaters planned to hand knit and I am working up to using my knitting machines that are now set up.

I have been on a bit of a spending spree with regard to interchangeable needles sets. The latest acquisition is one which I still cannot quite believe that I bought. You can see them above. I have yet to knit with them as I have only just unpacked them. They feel lovely in the hand, are a good weight, and feel very smooth. if you want to know how much the set is, Google it!

 As you can see they are indeed Lantern Moon Ebony Interchangeable Needles.

These are the yarns I am intending to use:

 The Cascade yarn at the top is for John and it will be an Aran.  The  Drops alpaca is going to be a textured knit  for myself and I also have the same yarn in a lovely moss green. The Alaska will also be an Aran and that will be for me.   Finally,  the Peace Fleece  yarn will also be an Aran for myself.

 I use a design software program called Design A Knit  for my machine knitting. I have been wondering whether to upgrade to version 8 and I have decided that yes I will because I will be able to chart out my Aran designs.  This will make life much easier for me as I will not have too use pieces of paper and numbers that I keep in my head. I was still basically only need the chart to do my foundation rows  unless of course the pattern changes as the sweater progresses or I decide to do something like Raglan in which case I will print out the full instructions. I have always done all this in my head but I confess that it has been increasingly more difficult to do the more painkillers that I have to take.

Once I have found a folding table that is lightweight I will also be back to dyeing my yarns for sale.

 DISABILITY

This is such a sore subject for me, pardon the pun. On my really bad days there is a part of me that feels  I am earning my disability status and benefit.

This government have succeeded in making people on disability benefits the target of the general public's anger. They have succeeded in blaming us for the deficit. I find that on Facebook or people that I meet when I am out in my wheelchair frequently offend me by constantly bringing up unasked  the subject of disability fraud. They always add "we don't mean you of course". That is designed to make what they say not offensive and it does not work. The government's own independent enquiry found out that 0.07% of disability claims were fraudulent. I cannot understand why people's anger is not put where it belongs: upon the rich who do not pay their taxes, the banks for behaving like boys with Monopoly money, and the politicians.

Not long ago I received the most vile email attacking me for being on disability benefits and yet attending dog shows. They accused me of being a fraud and in their ignorant state that I should go to a hospital and see in mobile people in their beds-the real disabled as she put it. What shocked me the most was that this was somebody whom I actually knew. The venom and the ignorance truly caught me by surprise and devastated me for a couple of days. In fact it frightened me. I was not hurt in the sense that I am sorry to have lost this person out of my life because I am not. Know what frightened me was the venom with which the letter was written and for a while I thought I do not leave my house. I felt as if I would be watched during my every move.

People really have to get a grip with what disability is and is not. The vast majority of people who are disabled are not immobile. Look at the Paralympics!

 Chronic pain that is severe and 24/7 counts as disability. The fact that I am able to be on my feet for short periods of time and even walk very short distances with the aid of canes and lots of drugs does not make me able. I am still disabled.  My balance is such that I fall on a regular basis. My bowel and my bladder do not work properly, I have heart disease, my spine is falling apart, I have neurological disease, and on top of that  I am bipolar. 

As I write this I feel embarrassed because it feels like I am moaning and of course  being English I was brought up to have a stiff upper lip. I also feel very uncomfortable because I feel that I am justifying my disability benefit. A lot of the time I have even wondered myself if I deserve the status of disabled. My doctor could not believe that I even asked her the question. She told me to ignore the government and those resentful jealous people. She told me that I am in no way capable of work and that I am very fortunate to be able to do what I managed to do and she says I am only able to do that because I have courage and determination. She supports me in every way she can because she believes in quality-of-life and therefore I am prescribed strong opiates without which I would not be able to swim, walk, nor attend dog shows.

I have shared on here some very personal things regarding the abuse I went to was a child and I did so gladly and without shame. I know that it has been of benefit to others and I continue to write on that subject. I used to publicly speak on it and raise money but I can no longer do that. 

However, writing the above about my disability has been a very unpleasant experience and I feel very uncomfortable sharing my feelings about it. It makes me feel like I have stood naked in front of people. I know that other disabled people feel exactly this way. They too have been shamed. There are so many illnesses that make one disabled where one does not look it. Ignoring me completely, there are diseases like lupus and multiple sclerosis which are very disabling in many people  yet they are not necessarily visible. My best friend has multiple sclerosis and you would have no idea if you met her because like me she is a determined person and proud and she fights.

 It seems that those of us who show tremendous courage and fortitude  in the face of our disability and pain are penalised and shamed for it.

I WRITE BECAUSE I CAN

Last night John and I went to see Janis Ian in concert in Birmingham. I have had tickets to her concert before but I was unable to attend the previous time so I was very pleased to get them this time. I was also very pleased that because of my being a wheelchair user I got both tickets at half price, a pre-booked parking space right outside Birmingham Town Hall which is where the concert was held, and a wheelchair space in the concert hall itself.

The concert itself was excellent. Janis Ian is very lucky that at just over 60, she still has her voice. I was very surprised at how she hit the high notes. The whole concert was just her and a guitar. No backing tape, no backing singers, no backing musicians. Astonishing.

Of course if you know Janis Ian's lyrics you will know that her songs can hit you right in the gut. Last night was no exception. However, the bit that really got to me was her talking about her mother. She clearly had a good relationship with her mother. She spoke about her mother being her place of safety when she was a child. About being held in her mother's arms and feeling safe.

I have never had this in my life. It is not true that one does not miss what one has never had. This feeling of safety is something I have hankered after all of my life. To feel as though I am home and safe.

To me my home is John. I also know that in reality there is no such place as security and safety. None of us are safe nor are we secure. We can have some measure of both. As an adult I am fully aware of this. So I wonder if this feeling that I have which I find very difficult to put a finger on is to do with the fact that I never had that place of safety when I was a child. There was nowhere for me to turn where I would feel protected and safe because those who were supposed to make me feel like that were the ones who instead frightened me and left me feeling completely insecure. I wonder if that is what makes me feel so keenly now?

I vividly remember the scene from the science fiction film 2001: A Space Odyssey in which one of the astronauts has his cord cut and he goes floating off into space. I was a young teen when I saw this film and that scene chilled me to the bone. I knew exactly how he felt. I have felt like that all of my life.

In 1979 I was in love with a man who did not love me. He was with me because I was young and available and accessible because of how screwed up I was. Even today, although I know precisely how one-sided that relationship was, it is one I have never forgotten. It was the 2nd time I had been in love. The trouble is, I had all the baggage of having been unloved as a child and being frightened and convinced that I was evil and not worth anything. He did not know this and all he could see was that his bit on the side was much more involved than he wanted to be. Anyway, the reason this relationship comes to mind is that a scene from our relationship seems very raw and apropos to this feeling of safety. The scene happened after our relationship was over. I had met him somewhere or other, by accident or design I cannot remember, but he clearly had nothing better to do that night and I went home with him. Afterwards, I lay with my head on his chest and I could not stop the flood of tears that came. I made no sound. At the time, I felt so totally alone and scared. Like the astronaut. I also knew I would not find any comfort where I was. It was truly one of the most devastating episodes of my life. In hindsight, I can see why, but of course then I did not know myself at all back then. Even as I write this, from my position of financial security, a 30 year relationship, and a profound understanding of myself and my history, I still feel the pain of the lost boy that I was.

As I write this, I don't really know where it is leading. I only know that I need to write and I am doing so because I can. The title of this post is a twist on the title of something else and I will not let on what that is just to see who might understand the reference.

I have been feeling something that I am finding very difficult to put into words. I felt it keenly last night at the Janis Ian concert. It has to do with time passing. With how much time has passed. And the full and certain knowledge that for me and for John time will stop (just as it will for you who are reading this ).

I think part of it is that I am aware of myself today and how I feel. I am fully aware of that which I lost, all of that which I never had and the effect that it has had on me. I am aware that so, so many years of my life were spent in darkness. I confess that now that my life is lived in the light, that I know how lucky I am in comparison to others, when I see the suffering around me, I find I am almost ashamed to admit that I do look back with a huge, huge sorrow.

I am enjoying experiences that I really ought to have had when I was young. I am now catching up on music which was produced during my time in the dark. It is not just new voices I am listening to but the voices of those current at various parts of my life which I was unable to appreciate because I was so dis-associated from myself and my feelings. I don't know if this even make sense. It is just my clumsy attempt at putting into words what I am feeling.

I realised last night just how frightened I am with regard to John's health and the fear that I have that it will claim him. Besides the fact that I could not bear to see him suffer in any way, he is also all that I have. I cannot imagine my world without him. That is a lie. I can imagine only too well. Hence my fear. I have made an appointment for him to have a review with is Dr. I will be speaking to her beforehand because John will minimise and with COPD, that is not wise.

I am not as honest in my sharing as people appear to think that I am because I very often refrain from writing the way I am right now. This is me though. Yes I am generally a happy and positive person but I'm not an idiot with my head in the clouds! I am not whistling in the dark to keep my spirits up. I am fully aware how temporary all this is

And when I feel this deep sadness, this terror, I can almost understand why people cling to very black-and-white views of the world and of life and death. I can understand why they choose such rigid Gods to obey and why they pour hatred and scorn upon those who deny their idea because it makes them feel less certain. It is why they cling together and have as little as possible to do with those who do not think as they do. In order to keep their idea intact they must have as little as possible to do with others who hold to different ideas. It is why relationships between the faiths are frowned upon. And while those of no faith at all so despised.

So recently I have not been watching as much DVDs. I have spent much of my time just knitting and listening to music.

It always amazes me how easily I can be made to feel deep shame when I am caught off guard or am distracted and tired. Last night on the way back from the concert we stopped for coffee at one of the motorway service stations. There was a man and woman seated at a table near me and the woman had the most beautiful wine coloured lacey long dress on complemented by wine coloured high heels and black lace stockings. As I left I told her that I thought her dress was beautiful and she reacted with the equivalent of a slap in my face! Both she and her husband turned away from me and she muttered something and it felt very much like she thought for some madman was pestering her. Or that I had just said: love your tits or something equally vile. I really was shocked and it made me feel sick to my stomach as I walked away. How very odd. I have strangers make comments about my attire, especially my boots, all of the time and it never occurs to me to react with anything but a polite thank you and I always feel and in a surprise that people would have the nerve to be kind like that to someone they don't even know. So I was very taken aback with last night's response from that woman.

Sometime this week Mary-Grace will have her puppies. I am really looking forward to this. As if I really need to write that! Despite having had many litters since I was 12 years old I still get excited every time.

I don't know about anybody else, I cannot be the only one, but when I feel just how much I love John, it frightens me.

SWILL OF SHAME

I do not watch programs on the TV as they air.  If there is something that I want to watch I record it.  I cannot understand how people can watch programs as they air because of all the damn adverts.

It seems to me that the vast majority of adverts are giving people the message that they are not good enough as they are.  Most of these adverts lie.

It angers me when famous men and women, though mainly women, are being paid vast sums of money to lie to us.They KNOW that they do not look like they are made to look on-screen.  They only look the way they do because of clever lighting photography and make up.  Yet they seem to have no qualms in telling you, the viewer, that if you use this cream or that powder or this eyelash thingamebob, you too will look like they do. It is a lie, they know it is a lie, but as long as their bank accounts grow, they do not care.

Men do not escape the constant drip drip of inferiority complexes.  Take a look at the covers of men’s magazines, particularly those aimed at health.  The men on these covers have no body fat, are too thin, are over muscled, and have fake sixpacks.  As a doctor said on TV these sixpacks are not possible without the use of steroids and are made to look the way they do with make up and lighting.

The only equality there now seems to be between men and women is that those have been made to feel unworthy!

Take a look down any high street on any day and you will see that most of us are very ordinary looking and come in all shapes and sizes. You rarely see anybody who looks remotely like the people we see in the adverts or in the movies. Yet many of those people will be desperately trying to look like the people they see in the media, sadly not understanding that they never will because not even the people in the media look like they do!

On top of this we are constantly castigated by the medical profession for being fat.  The mean weight of people in the West has increased dramatically since the 70s.  The reason for this is not because we have become greedy and lazy.  No, it is because nutritionists have been feeding us the wrong information!  We have been told that a low-fat, high-carbohydrate diet is what is best.  This is why we are fat.

The human body is not made to tolerate high amounts of carbohydrate, be they whole carbohydrates or refined carbohydrates.  We did not evolve to eat this way.  In the beginning we were hunter gatherers and we ate mainly meat and fish with a few berries and fruits and vegetables.

Carbohydrate is very easily turned into fat.  Carbohydrate also makes you hungry! This is one reason why after eating a Chinese meal or a meal of pasta one is hungry soon afterwards. The body releases insulin to deal with the sudden rush of sugar and thus blood sugar level drops but it drops below normal thus triggering hunger.

I know from personal experience that until I went on a low-fat low carb way of eating, I remained overweight and in the vicious cycle of trying to lose weight whilst at the same time always feeling hungry.  Now I am not obsessed by food, I lost 100lbs, and I have kept it off.

I often have people ask me about losing weight.  When I tell them how I did it many will immediately say “ I could not do without my bread” and they do not see or hear the addict! These people would rather stay fat than give up their addiction.

However, being fat or thin has absolutely nothing to do with one’s worth as a person. I know  that I was not really able to lose the weight and keep it off until I realised that being fat was not a sin and was not a sign of my unworthiness.  I had to accept myself as I was before I could change.

I truly believe that the world would be a vastly different place if we all valued ourselves. If we respect ourselves, we are likely to respect others.  If we value ourselves we are likely to value others.  If we have compassion for ourselves we are likely to have compassion for others.

Instead children are taught that they are not good enough from the very beginning.  Even if they are not told this directly, the way that we rear children gives them this message: that they are not good enough as they are.  We fear children and so we try and control and mould them.  We force them to be how we think they ought to be and in so doing we create adults who are damaged and who behave in ways that are detrimental to themselves and to others and it becomes a self-perpetuating cycle. The worst results of this can lead to a lack of empathy for others. In extremis, this creates people that we label psychopaths or sociopaths.

Add to this religion, which teaches that you are not good enough unless you believe or do a particular thing. Now you have an even better recipe for discord and strife and the production of yet more evil.

The results of how we raise our children can be seen across the world today.  It has always been thus.The big difference is that to day with the advent of the Internet, and satellite media, the results are very visible.

The powerful have a vested interest in keeping the general population steeped in self-hatred.  People who hate themselves or who find themselves unacceptable will do anything to be rid of the pain that this causes.  Teach a child that it is not good enough and you will have a slave to your will.  Governments or people who seek to have power over others understand this only too well.  Without naming any specific church, churches have understood this for centuries.  This is the reason why the religious are so adamant that faith schools are a necessity or that homeschooling for religious reasons is a necessity.  The Jesuit priest who said give me a child until he is seven and I will give you the man knew what he was talking about!

We cannot even age without feeling shame for ageing! We cannot be sick without being blamed for being sick.  Even when we die we are blamed! No wonder the vast majority of us live in the swill of shame.

The human body is fragile and it is not built to last.  It is built to fail.  We as human beings get sick.  Yes we can do things to ourselves that are detrimental to our health but most of these things are behaviours that come about because of shame! Once again it is a self-perpetuating cycle.

The overriding message we are all fed is “Hate Thyself”.  Whilst we do, we are slaves to the powerful, be they governments or business or religions.

SHAME : YES, REALLY

Until I read the article I linked to in the previous post I had no idea that I felt shame about my illness.  Realising this makes sense of some of how I feel particularly when I get angry and frustrated.

I hate it when people ask me what is wrong with me.  I don’t mean that I am offended by them asking. It is a natural thing to ask. I just find it triggered shame for some reason.

Take today for example.  I am buggered as they say.  It has been an hour since I took my medication and I don’t feel any better so my plans to today will not come to fruition.  I will manage to put the socks in the machine as today is sock washing day but that is probably it.

I get embarrassed when people comment about how often they see me on Facebook. I have an active mind.  I spend a lot of time sitting down.  The laptop is right next to me.  I check it regularly and if I feel like it I comment.

Some people seem to think I do a lot each day.  I don’t.  I am not lying when I say that I spend most of my time sitting down.  I may well go for a swim each morning, or at least I tried to, but I force myself to do this because it is really important in helping to keep me mobile and to keep my weight down.  Everything else I do after that is very dependent on how I am on any given day or at any given hour.

Someone recently asked me how many kilos of yarn I dyed a week! There is no way I could dye kilos of yarn a week! I dyed half a kilo on Tuesday the but not without a lot of medication.

Like the woman in the article everything I do need a lot of preparation and a lot of planning.  Even if we just go to the mall on a Saturday or Sunday, that does me in even though I am in my wheelchair.

I am thinking about why all of this should make me feel shame.  I know my father would see my condition as a weakness and me as a sissy for letting it interfere with my life.  However that is how my father always saw me.  He detested me from birth I think and if not from birth certainly by the time I was five or six when it was obvious to him I suppose that I was not going to be a macho soldier man like he was. (I am indeed very grateful that I’m not like my father as he was a bully, a judgemental hypocrite and extremely self-centred.)

Just when you think it’s safe to go back in the water!  The gaining of self-knowledge really never ends.  I am surprised, and also not surprised, to find so much shame wrapped up with my disease.  I don’t think it is just that it prevents me functioning.  I think that I feel somewhat responsible for it.I am well aware that modern research has shown that adults who had extremely stressful childhoods, as I did, are very prone to inflammatory disease as adults due to the constant production of cortisol in their childhoods.It is also known that the brain gets hot wired into reacting in a certain way to stress because of this prolonged exposure to it while the brain is developing.  Of us as an adult the body’s stress triggers are ultra sensitive. On top of this, I was actively anorexic/bulimic from 15 to 30. It is not surprising to me therefore that I now need medication for my gut to work properly and that I have so much trouble with my joints and spine I.E.my bones.

However, most importantly for me I am no longer in the mental and emotional distress that I lived with for many years.In fact I lived with it all of my life until three years ago.  This physical stuff I deal with now is much easier and far preferable.

Now that I know that I have shame in the mix with my disease I am sure it won’t be long before that is no longer the case. Experience tells me that once I recognise a problem it is not long before it is either lessened  or eliminated.

SHAME FACED

I went out yesterday during the day to the cinema. We saw 2012. We chose to see this at a cinema because it is a film the relies largely on special effects and they are always best seen on a large screen. I don't often go because I find it too physically uncomfortable. However, I armed myself for it. An hour before I went, I took 4 different pain killers, the maximum does of each. I considered taking a muscle relaxant as well but as I had to drive the 24 miles to and from, I thought better of it. Anyway, the drugs worked and I was able to sit out the two and a half hour film. It is always a surprise to me to discover that even when taking the full whack, I am not pain free! I still fidgeted due to discomfort in legs and hips and back and ribs. At the end I couldn't get up out of my seat without John hauling me up.

I awoke this morning full of fear and feeling tearful too. I had been fine over the weekend and was fine toward John too. I have to say I was worried about him being home but I need not have been. I did not feel anger as I feared I might. Anyway, I went for my swim and did double my normal amount of laps.

I couldn't wait to get home and inside again. I do not like being outside at all right now. The way I am feeling is similar to how I felt between 12 and 16yrs of age. I went around looking at the ground. I was lonely and afraid but nothing showed. Everyday school day I went through the same thing-being hit, spat on, tripped over, verbally humiliated, my nick name was 'shit'. Home and family was just more of the same, I found no solace there. I never lost that feeling for many years and even today, I find it very hard to go past a school and will avoid it if I can.

(It is also why I find dog shows such an effort to attend. I do it, and it is not as fearful as it was, but it isn't effortless on my part. I still have to steel myself for it. Groups of people terrify me. My PTSD really acts up too. If anyone comes up to me unexpectedly and touches me, I jump out of my skin. Thankfully I don't lash out. Oh, could you imagine that? I wouldn't last long hitting people would I? I know that for me to write about the fear I have to deal with for dog shows may seem odd when one considers the way I dress for them. I don't understand it either.)

I am not sure why, but all these feelings have come back to me. I have become afraid of being out, at least in daylight. Yes, I went swimming but I couldn't look at anyone. I feel relieved that the supermarket is 24 hour so I won't have to go until late when it is dark and empty.

I think it's stupid but I can't help the way I feel. I don't want to see anyone or talk with anyone. I don't want to put on my face. I am sure this will pass eventually and I shall return to being able to go out in the daylight and hold my head up.

Quite why I feel so ashamed when I have done nothing wrong is not clear at all to me, nor is it clear why those teenage years are back to haunt me.

I am knitting socks as usual. The merino/bamboo yarn I dyed using Kool Aid is really knitting up well, I am very pleased with the colouring. The second hand dye, in Trekking 75/25 is also coming along well. I have made up another no hole lace design and I will probably repeat this pattern for a plain coloured pair.