I returned from my Tai Chi lesson with creaky legs and a pressing urge to make a large vat of refreshing tea and to soak up the sunshine. With tea made, I set up the laptop on the bed-table and settled down under the duvet, with sunshine and sounds from the urban outdoors pouring in. Right, first thing to check…Facebook! Some things never change 
I find that it’s a good way to set myself up for serious do-stuff time, though. It relaxes me before I start. Studying is easier with a calm, unstressed mind and my pain levels are often lower if I can relax and be comfortable.
I started studying for my first qualification from the Open University (OU) back in, ooh, about 2002 I suppose. I did not have the cranky old laptop back then. In those days I sat in front of a big old computer which sat on a massive desk, whilst I sat on an increasingly uncomfortable chair. I would sit balanced on many cushions with my legs precariously wobbling on a not-very-helpful leg rest. Perhaps I looked like a picture from that old fairytale ‘The Princess and the Pea’. (Yep, that’s the one where she couldn’t get comfortable, even on a pile of about a hundred mattresses. The lucky goil only had a rogue dried pea as the cause though,… much easier to sort out)!
Back then I worked through pain levels so high that, looking back now, I have no idea at all how I even completed the courses, let alone passed them. But I had discovered a drive within me that I knew nothing about until I became disabled. It turns out that I just will not give up! Who knew? Not me! Turns out I’m determined. I’m stubborn. Downright crazy? Well, some people couldn’t see why I would study in that condition. But we have to have something to hold on to, and that was one of my things I would not let go of.
I need goals in my life, achievable short-term ones are good for keeping me motivated and feeling a bit dynamic. But I also feel the need for something progressive in my life. Otherwise I feel like I’m standing still and the world is passing me by. Learning something does the trick for me. It doesn’t matter if it’s academic, physical, art & crafty, techy…whatever. If it means some sort of progress, then it makes me feel good about myself. It makes me feel like I’m doing something meaningful or useful. Which is blooming important as although I can have bouts of physio’ activity, they are never long enough to feel like I’m of much use generally.
When I started studying with the OU, I had not yet received my diagnosis. I was waiting for ‘my legs to get better’ because I knew nothing else. I chose my subject matter on the basis of a change of career, which I looked forward to getting on with, yes, ‘when my legs got better’.
I received my CRPS diagnosis in the last year of my OU degree, thwarting all my hopes and plans. But I’d already applied to do another course, which was due to start the following month. The studying had become a large part of my identity, it was the only progressive thing in my life at the time, so I wasn’t going to give it up. In fact it gave me something to hang on to while everything else was being turned upside down. It was a constant, and that helped. When the pain levels allowed… I could always bury myself in my studies.
One day I might even dare to go purple, too!
It’s now 5 years since I last studied. At the beginning of that time I had a really bad patch where I just broke down and fell apart. There was literally nothing in my local-life other than insurmountable mundane chores like trying to get food from the kitchen, and the only thing I had left that I did by choice, my studies, was also blummin’ hard work because of the pain levels involved. There was no joy in my life and I crumbled. I had a really honest conversation with myself, and with one of my besties, and decided to move home to be closer to my family and, in fact, said bestie. The dream of a masters degree was gone but it was totally my choice because, when it came to the crunch, of course my day-to-day quality of life would improve more through being closer to my family than by getting awarded a masters degree. The resulting moving-home pain threw everything out of the window for a looong time, though. So I haven’t studied for years.
I always wanted to get back to it, but, “What’s the point?”, I would mutter, “It’s not like I’ll ever get to use any qualifications I get…”, said with a ‘sad face’.
But, yes, you’ve guessed it, I’m too determined/stubborn/crazy for that. My heart won over my logical brain!
The Open University are supremely, amazingly, wonderfully supportive of any disabled person looking to study with them. Well, they are to anyone, of course, but I am referring to the additional services and support provided to people who are experiencing conditions which don’t allow them to study in the same capacity as a ‘normal’ student. I had extreme pain issues when I first started studying. An OU assessment resulted in some really helpful arm-rests, a better-than-the-floor foot-rest and a really helpful ‘book chair’, for example. All of which were aimed at helping to limit the pains in my legs and neck which were caused by studying.
But study support isn’t necessarily in that form. I made the acquaintance of a lovely lady, who is still a good friend of mine, when she was placed at my disposal during a residential course. She helped me get about by wheeling me to all my lectures, to lunch, to more lectures, to my room, to dinner… She was my devoted and very professional helper for the whole week and without her I couldn’t have done it at all. Thanks to the OU I could study the course and I gained a friend!
I definitely didn’t look as serene as this though. Pained expressions and hunched shoulders are not that beautifying!
Now, after much discussion with the OU about my more recent dysautonomia problems, (particularly the neurological confusion), and whether it would be viable for me to attempt to study, I have been assessed again. And the encouragement I received, on a personal level, has stood out in particular.
An assessor came to my home, to save me from having to painfully drive anywhere. To have someone simply listen to the problems that I have and consider them seriously to work out ways around them was, in itself, a glorious and shiny experience. Most people do not take an interest in such things! And to be reassured that I deserve the support on offer was something I really needed to be reminded of.
I am stubborn to the point of being of detriment to myself, I do not like to ask for help. Not in a grumpy don’t-call-me-disabled way, I’ve been through that whole acceptance rollercoaster thingy! Just in a trying-not-to-be-a-hassle kind-of way. I like to do things myself despite my conditions, but that’s a bit la-la-land, really. Liking the idea of doing stuff, and actually being able to do stuff, are two whoooole different buckets of monkeys!
So the assessor prodded at my distant memories of what it was like for me to study pre-disability. I was shocked to realise how easy it was back then! Shocked at how severe the limitations are now by comparison, and at what help I need to improve my ability to study to a level that would, despite the improvement, still place me at a massive disadvantage compared to ‘normal’ students. I have got used to living with these limitations, and I don’t usually like to compare them with what life used to be like because it’s just not helpful to do so. This is one incident where it was actually necessary. Okay, I acknowledge it…. I really need the help!
Working round the neurological problems was much harder to figure out, but the assessor came up with several suggestions. Some were amazing, and others not really applicable to my course requirement. She covered the lot and we’ve picked a couple of things which might help a bit. But really, the rule of thumb will be – when the brain says ‘no’… no studying for me. Bertram tends to turn up and induce the ‘fight or flight’ unhelpfulness when I’m emotional or anxious about something, though, so I’m hoping that studying will actually be far less affected than interactions.
I’m still scared about not being neurologically up to it, but if I don’t attempt it now, then I’ll just be accumulating time. During which additional dys’ issues will get to raise their ugly little heads and make the whole thing even harder for me. So I am going to grit my teeth and hope I can do it. It’s not the skills or abilities that would be the problem, my worry is whether my erratic ‘do-stuff’ moments can occur often enough for me to hit all of the deadlines. I’ll be really disappointed if I can’t, but even if that happens I’ll feel better knowing that I tried.
So, there I was sitting upstairs, with the sun streaming in. I hoped the knocking that I could hear was not at my front door because my legs didn’t want me to get up. But I thought I’d best make myself check. And lo! It was my Open University Brown Box of Wonders! With each new course you get the magic box delivered to your door, and in it are the wondrous items associated with your course. Any OU student knows that the arrival of said box has quite an effect. There is a weird combination of fluttering excitement, big grin on face, as well as stomach churning fear, complete with worried looking eyes…we look quite a picture!
So here is my Brown Box of Wonders. And I’m going to open it up…..
I have…wait for it…..
A fair amount of space-filling brown paper! (Woohoo! That’s gonna get shredded for the compost)!
And a folder….. with lots of different bits of printed paper in it. Yep, that’s about what my brain can take in at the mo’…it has paper in it! I’ll stop shaking in a while and get my brain back online! (I’m slowly getting more used to working around the over-the-top ‘fight or flight’ thing, but it’s a good thing I don’t have to write this all at once)!
Phew, and there’s the CD ROM thingy, or whatever it is. That’s the other aspect of the Box of Wonders arrival… the first thing is to check the ticklist and make sure everything is there. Very occasionally something may be delayed and all affected OU students turn to the phone to suss out what’s going on! But that’s the thing about home study, you do it for yourself.
There is amazing support with the OU, including phenomenal support for disabled students. It’s support to enable us to study, then we can actually get to do the learning bit for ourselves. When we get to the end and receive that hard-earned bit of paper, it shows that we did it. No-one else. I have a bricks-and-mortar degree from when I was able-bodied, but I feel like I just somehow ended up with it. My OU degree means so much more to me because my skills got so well honed, and the outcome was that I had so much more faith in myself and my abilities than I ever did before. I found out what I was capable of without talking to tutors, or asking fellow students. Don’t get me wrong, you’re not isolated during home study – you can do all that stuff, it’s just that I didn’t. I just studied when the legs were less screamy, whatever time of day that was, and I did it in my own little isolated bubble. My skills were uncompromised, everything I achieved… I achieved. And it’s an amazing sense of achievement, I highly recommend it!
My shiny new folder!
Three cheers for the OU! (Yes, I’m excited, now, can you tell?)! Without it those of us who cannot attend full-time institutions would not have had the same level of access to these courses and qualifications. There are many parents, full-time employed, disabled, people serving in the armed forces abroad, carers and even young people who cannot afford, or who want to avoid, the large debts of bricks-and-mortar universities, who have gained in confidence, skill-set, qualifications and even successfully changed career because of the OU. And not just in the UK, either.
OU education will be much less accessible, (three times more expensive), and less broad (fewer courses to choose from), if the proposed higher education cuts go so far as to also hit the Open University. I’m far too busy day-to-day just trying to live with the symptoms of my conditions to be able to do much in the way of fighting for causes, but I certainly spared the mere minute or so it took to sign the online petition requesting the UK government re-discuss the OU-specific cuts in Westminster. The thought that many others like me will no longer have the opportunity that the OU allowed me is galling. It is what has got me through tough times, it has gained me respect from other professionals (instead of ‘just’ being an expert patient), and opened a window of (health dependant) possibility of usefully working from home at some point in the future with the high level skills that I have gained. I hate the thought that others like me will simply no longer have that chance.
In my land of make believe, that place I retreat to when times get really tough and the pain levels are really high, I could go and study for a PhD if I wanted. No neurological limitations, viable physical attendance, a magic pot of money to pay for it and appreciative potential employers at the end of it. *sigh* That’s a dream for rainy days that I shall treasure. Dreams also keep me going, even if they remain ‘just’ dreams. But thanks to the OU I got the degree I wanted, and I achieved the post graduate diploma, too. Even if it turns out that I can’t work around my conditions well enough, I’ll know that I gave it a go.
And there’s always tea!
Wish me luck! And if you want to look into any sort of studying I highly recommend it. Oh, and please spare a mere minute or so to follow this link and add your name to that petition I mentioned, there are loads of people out there who will be really grateful.
Perhaps the powers-that-be at Westminster will have a moment of clarity when they look again at the value that the OU adds to the available human ‘resources’. And if they do, then us lot will still have the chance to follow our dreams as far as we can. 
Meanwhile, that cup of tea is calling me….(& probably Facebook, too, shhhh).
x
