I’m not looking forward to tomorrow.
The Open University has been very keen that I get help with my studies since I have some health problems and to this end I am being assessed tomorrow morning for the Disabled Students Allowances. One, or two, assessors are coming to the house for at least two hours to make a confidential report and a digital recording: it all feels rather intimidating to me although they have sent me a letter in which they emphasize that it is not a test and that it is not an assessment of me but rather an opportunity to assess the help and strategies I may need. Personally I do not see how that can be done without assessing me, but we’ll see tomorrow.
Previous experience of such things means that I know I will be left feeling useless, hopeless and wondering how I manage to get up and dressed in the morning! And if the past is anything to go on, once I have been reduced to feeling there is no point trying to live a normal life any more, I will be informed that much as they sympathize, and dreadful though they assume my quality of life must be, there is nothing I am eligible for. They mention that part of the assessment will be to reflect on the effects of disability in the past. I know that this will reduce me to tears: I feel them welling up just writing this, since so many of my previous hopes and dreams have had to die a thousand deaths.
After countless operations in my youth, I then developed ME to add to the existing chronic condition I had. In the past I have been told that my inability to breathe, walk or take exercise is all in the mind: that being bed-bound for two years meant that I must just be a lazy person: that ME is ‘yuppie flu’: that if I had mental or obvious physical problems I could have help but since I ‘manage my chronic disabilities’ well, I am not entitled to anything. Oh yes, and one doctor told me when I was in my early 30s that I just had the body of an 80 year old so get on with it!
So I just carry on living my life, enjoying myself, and refusing to think about my problems unless they are particularly bad, when of course, I get depressed, but then bounce back again. I will not consider myself disabled in any way since so many people have much worse conditions than I do, and I live such a full and varied life. However, I especially avoid medics. of all kinds as much as possible, and assessments.
But the OU has stressed that I may be missing out on support which could make things easier, things such as a grant for taxi fares so that I do not get so exhausted travelling to tutorials in other cities, a downstairs room with en suite bathroom at the Summer School, and help carrying my suitcases, plus a rest break in the middle of our long final examination. They will provide such things and in return will get money from the Government for so doing: they really want me to go down this route. They are such a splendid institution that I have felt morally bound to go along with their wishes, but I HATE with a vengeance, being in this situation.
This feels worse because emotionally I am feeling particularly fragile at the moment: a Consultant and my General Practitioner are trying to get me to have a very invasive procedure to obtain a biopsy. This procedure can result in complications for 7 in 107 patients, involving further surgery just to cope with the effects of the procedure, and I feel that I am being rail-roaded and, actually, rather ‘hounded’. My health is better now than it has been for years: it has taken so long to get some stability and I cannot face disturbing this and losing the freedom that I have just begun to enjoy. Yet three phone calls from the hospital, two from the surgery, two visits to the doctor and now a doctor’s letter has come summoning me to yet another consultation as they try to get me to have this procedure. I am happy to monitor my situation with another procedure which is non-invasive and that is where I am sticking.
I know that in principle everyone involved in both the assessment for grants, and the diagnostic procedures, have my best interests at heart. But too much has been done to me over the years: too many years have been lost in just marking time and trying to get well: I am having the time of my life now and I want to be able to enjoy it without frequent reference to the fact that I have not had the life of my peers. I prefer my own version of reality: it has been hard won and is what enables me to keep going cheerfully.
Being brought up hard against some other peoples’ views of my past and present only reduces me to feelings of hopeless inadequacy, whatever their kind intentions. And now I am sitting here dreading tomorrow, knowing the depression that will probably ensue, and the effort it will take to get over it. So thanks for listening, sorry to have gone on, its always the straw that breaks the camel’s back!
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