Archive for the ‘Disability’ Category

. . . what’s on my mind?

Posted: January 5, 2020 in Brain Health, Disability, Health and wellness
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It would not be even approaching some sort of equilibrium, or balance between our worlds to suggest or offer explanation that I am sick and you are not.
Riding the tidal waves of seizure through the night, laying on top of an all consuming duvet which in the next second is a concrete slab. The radio triggering slalom, mind bending audiovision. A tiny lady country singer pointing to a crescendo of one’s pulse and hyped breathing. So too the prompting of the unique voices of the news delivery, that have become activators after decades of adaptation to the rhythms of my travels in the night. . . .

and you, have a hangover?

. . . . . . . . love is the best disinfectant

Posted: February 3, 2015 in Brain Health, Disability, Health and wellness, Poems, Ramblings
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ripped from sleep’s desert
I punch air and leap
into the days pain
roll from dampened moss
that was our bed,
and the mechanics begin,
the automaton who has
fouled the grave, again,
rises as smoke out of fire
but there are no ashes to clear.
A new dawn, new sheets?
and planted on a towel erect
an overturned soda glass
within the sheets
to assure an arid place
in this mattress creek
for arms of understanding.

 

 

dwk

……disbelief

Posted: March 26, 2014 in Brain Health, Disability, Entertainment, Health and wellness, Ramblings, Sport
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I watched something that has supported me like a scaffold rig for about 20 years, die last night. The confidence to pursue, the guts to fight seeping away from a group of extra ordinary people who forgot how to do what they do. A space was left between their ears, memory deflated of something they had done thousands of times for most of their lives. Fantastic physical specimens paid a lot of money to entertain us in a sport that is very tribal despite their bank balances they simply ceased to do what has entertained millions and give courage through joy, pride and self-confidence through example.
I know they will come again and again but this team one wears the colours of, particularly on match day, are my family, my people, with my commitment which is a great therapy.
Even for the fullest in fitness, they present an opportunity to unwind, to scream and shout at a stadium or even in your shell. Mentally urging them on and on one is raising oneself out of gloom and of course winning is achieved for us all. Resulting in a better frame of mind on a Monday morning a happier outlook without the need for sunlight. I  need the tribe (a psychologist suggested that the other team in most sports is NOT the enemy in a symbolic battle, the opposition players are not to be considered other than obstacles in the way. The enemy is the net to be hit, the line to be crossed, the basket to be filled. that is the winning of any symbolic struggle on a sports field). I think he is right. Some people just don’t get it but have never been to a live game and felt the enthusiasm among so many and it is interesting how they find their self-confidence from other things. If someone hates sport I guarantee they are hooked on something else and can talk for hours of it!
Last night was sad you see, because I fall over a lot, do strange things etc. and so am isolated but I find self-assurance in what my team does. So when it fails it hurts, when starts to fall to pieces so do I.
I await a new era acknowledging that big time sport worldwide only exists because of the money to be taken from its spectators through tickets or TV, but the reason they spend is more than a little entertainment.

does the Prime Minister know. . . . . . .

Posted: August 28, 2013 in Brain Health, Disability, Health and wellness, People
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. . . . how self-confidence, however rigorous, strong or embedded can be shredded by anxiety. I got MY letter today and read every word as it was not only an explanation of future matters but also a first point of contact. No one wrote or phone or emailed me to say this was coming and that I should prepare myself for a repetition of my humiliation by the ignorant to determine if I should be aided by Her Majesty’s Government. Appealing was an indignity, finally winning at Tribunal with specialists supporting me. The Department of Health & Security’s representative obviously having had the necessary papers thrown to him minutes before he sat down in front of a lawyer as chairman and a local Councillor and Trade Union representative. That told the whole story. When Neurologists and witnesses of my condition put ink on paper they cannot be mistrusted or brought into question by the DHS. I was made a lifetime decision. Because it took so long it cost HMG thousands of pounds in back payments with which I could repay my debts to good friends.

Already I hear the whisperings “but that’s my tax money”, well who helped pay for your grandfathers pension or hospitalisation? For your children’s education etc. etc. I did. After 2 World Wars after which the returning soldier or anyone who had a role in winning, were promised freedom, liberty and equality especially in medical and social matters, this Prime Minister has finally discarded some of the final threads of what his colleagues would call the “nanny state” in private of course. Soldiers literally, return from modern day battle with disabilities and are ignored, thrown aside. Sailors and Airmen after serving their country for many years are made redundant and then the government place an advertisement on the television for the Royal Marines??

Equality, – if you have enough money with which to try and destroy the world’s financial markets and oh by the way, make generous contributions to the Conservative or Republican party, which can now only be seen as corruption. Two to three years later how many financiers have been prosecuted, how many Executives have taken responsibility and how much non-paid tax has been gathered. I recently read that unpaid tax amounted to ten times the amount that could be possibly gathered from benefit fraud.

The very tone of MY letter is of constricted black and white alternatives, “You will” “It is important” the whole tone is that of you shall! or starve. Employment and Support Allowance (note the words of actual definition ‘Incapacity’ “Illness”, “Disability” and “Severe Disablement” have vanished from titles and text) and ‘lifetime decisions’ of the DHS Tribunal completely disappeared, no acknowledgement, nothing, no mention of appeal. The whole point of tribunal arrangements was to avoid the courts which were clogged up enough no doubt. This Prime Minister has played an ace card, it is not a court who made such decisions therefore, they count for nothing. So yet again I have to show that I do not have a wheelchair but still a big problem, however embarrassing, however hard I might try to pursue one day at time in some lucid form, I am required to…. well let me quote it:

“Customers will be considered and assessed for Employment and Support Allowance between 2010 and 2014”. I wonder what I am buying?

“We will send you a questionnaire” “We use the information to decide if you need to attend a Work Capability Assessment”, “A health care professional (a contractor has been employed to find and employ them) will assess you and advise Jobcentre Plus how your illness or disability affects you in your everyday life” This professional in most cases will be a doctor without a job, not a specialist Professor in Neurology and Neurosurgery whose clinic I have attended every 3 months for a very long time. They will, probably, not know the extent or possibility of harm complex partial seizures have and will do. Side effects of drugs or of the damage done by full seizure when I was younger.

“You may be required to attend a work-focused health-related assessment and work focused interviews” – oh boy, the bureaucrat is back in the saddle, despite amassing a bill at lunchtime (a recent scandal) larger than genuine benefit fraudsters create in one year. Yes, I believe that people out there are pretending because of sheer laziness or are just corrupt. Landlords claiming for dead tenants, people fully recovered but still claiming assistance. But I don’t believe that those who chase the sick have the clarity of thought that work should be created for the able-bodied and the cheater routed out in all places first. This week I heard British companies were advertising in foreign countries in the native language of those countries?.

“IF YOU DON’T YOUR BENEFIT MAY BE AFFECTED” (their capitals). “We then decide if you are entitled to Employment and Support Advice”. I now have a new Neurology Consultant who even expresses his concern at my being “unaccompanied” in a letter to my General Practitioner whose clinic I have to chase to get a medical prescription out of each month. This is for medicine I have taken for 25 years. This clinic is now run by a private company overseen by a medical Trust. 7 years ago it was run by a group of doctors and someone would call you, usually staff on doctor’s instructions, you would even know their name and say “you have forgotten your Prescription David, are you OK? Not now! The shifting of budget and medical referral responsibilities to the General Practitioner or the family doctor, a Urology Specialist once explained to me, was to slow down the money coming to medicine in general from central government.

I read and hear of the disabled, attending the above interviews and there is no access for wheel chairs! Mobility in the form of a car removed from a suffer of palsy, her husband worked part-time so they could afford their life and tipped the balance so no more going out. Others now taking their own lives rather than be immobilised or pushed into a lonely poverty, I understand, it is just too much. This letter lying before me now from Glasgow not a local Jobcentre, means I have travelled back in time to the mid 90’s, when self-employed I simply could not get people to pay me and so had nothing to eat or pay the rent and was epileptic too. A lowest point. The attitude then was ‘no wheelchair’ no disability, no assistance, until one asked about Disability Working Allowance and was asked to “wait a minute”.

All this instigated by a man who wheeled out his disabled son to meet the press, is now an overweight Prime Minister, who wants to hurt me for the accumulation of debt by the greedy?

dwk

. . . . where is the new post?

Posted: April 21, 2013 in Brain Health, Disability, Health and wellness, People, Ramblings
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I am more and more, getting the feeling I should write that down, that’s funny, that sounds right for a wordpress site (I always use a small w as I know of the humility this community of key pounders carries with it as its honour medal). But tangents always interfere and I never get here. The ideas simply disappear. You see the theory that the more one digresses within conversation or even passage of writing the more implanted or embedded, (popular word at the moment with software or apps or applications as I prefer, or even executive applications if you are a stickler and want people to know what you are actually talking about) become one’s dreams, as in deep sleep or even ideas that come to one when there is no envelope around during brief resurface. There in the digressive chat pops up that tiny bit of information that could make you a fortune or some even call them Freudian slips and sliding. That something you thought lost will flourish in the most irrelevant, evolving and constantly changing memory ground.

I admire the idea my brain is rushing around storing data during sleep. From filing cabinet to cabinet, rushing around, paper floating everywhere, or even scanning all paper to turn important information into digits so its all accessible on screen. My local doctor’s surgery has achieved this in the last couple of years. Trouble is no one seems to look down there (scrolling) or even read my nuerologist’s recommendations for a change in medication in the process of filing or scanning or whatever device they use. They look like bad photocopies on screen and it aint the screens fault as it glistens in the shabbiness of a practice taken over by a contractor paid by a local health trust. I can’t blame doctors any more, its a company now the lead sawbones has left, not that I ever saw him! Now everything is run by a management and another word firmly rising in conversation, locums. This general medical practice is now led by a lady with nursing experience. Neglect is the word my care-worker friend says is the technical word for the removal of information from that file stacked wall that looked almost reassuring as you walked into the surgery and that mass of information almost welcomed you. Dusty ancient files in those cheap NHS packaging cardboard coloured sleeves that fitted the size of a medical prescription or a once folded letter precisely. That perhaps only my observant UK friends would know of? A whole wall from floor to ceiling 20 feet long! These small file sleeves were an obvious element in the architects design dimensions of this modern functional environment. Reassuring because you knew someone could lay an experienced hand on your file when needed.

Storing while I am snoring, making a storyline from the chunks and fragments to help in the process, a fairytale (whoops, computer doesn’t like fairytale its red underscored it again! Is it banned? or am I being somehow maliciously discriminatory?) or even a nightmare dream to bring all floating flotsam data to rest in the right place or even disposing of it, recycle binning it? Then I wake up, turn off the apnoea therapy device off, jump out of bed, do me stretching, wash (yes we still do that in old England, its underscored again, wait it just corrected and put a capita E on England, and again! I am going to have to have a word with windows 8 – ah no capital W!!! I know wordpress (red underscored) is not so stringent in its correction parameters) and while choosing the day’s clothing, from my vast wardrobe, a million things come flooding through and I run to the nearest pad or keyboard – but it is gone. . . . .

. . . . . . something about digression and being able to convince myself to write some sci-fi, because that would make a great plot and the rest is just a matter of filling out with detail say the “how to” writers. But, can I convince myself to take that time and with my useless grammar hammer it out? Write a book? But it IS gone! Even the joke about reassuring my mother the abbreviated f word was actually the name of the publisher involved in the forthcoming book, sorry, tablet readers, download. Honestly mam, faber & faber (both underscored again ah-ha, this clever device is not aware that the publishing house’s logotype is a simple lower case ff !) But then I am hardly an intelligent machine in a position to criticise as my random access is failing.