(rubbish title, I can't think of anything better right now though)
So lots has changed. I'm studying at a "conventional university", living in university digs, I'm living independently (my external help comes from phone calls, emails, Skype, and about-weekly visits from parents 60-odd miles away).
One thing that has changed is that I've started identifying as disabled, specifically physically disabled.
I've become Accessibility Queen/Bitch. I'm able to do stairs, if I must, but I'd really rather not. I've realised my legs aren't really able to do much helpfully and that a wheelchair might be the way to go. That's OK. If it helps, it helps.
Ok, so a wheelchair does provide its own challenges. Kerbs become impossible, as least to start with. I have to work out whether my back/shoulders/elbows/wrists/fingers cope with self-propulsion. That's a job possibly for the month I have "off" over December/January.
I've accepted this as much as I can before I first sit in a wheelchair. I've got a mobility scooter which is fab for the outside stuff - I only have to manoeuvre by foot inside now and my legs will be ever thankful for this fact. The ability to take a heavy bag across campus or to get to my flat and back to lectures within an hour will always be something I'm grateful for. Is great for conserving energy (and saving time).
What I hadn't factored is the response of others.
The sympathetic "Oh, hun, I'm so sorry" response. I question step-free access, I get back an apology. Whether access is possible or not. An apology for having my level of health (or apparent lack thereof).
I have been trying to use the piano room on campus (the one for non-music students). This requires, in theory, a trip up a flight of external spiral stairs. The Students' Union have been ashamed, embarrassed, have tripped over themselves trying to help, offered multiple solutions, just because the room hasn't got obvious lift access. They've been great and I'm sure that once I've made a decision on which of two solutions I want to pursue, they'll continue to be great. However, I wasn't ever expecting the sympathy vote. The furrowed brow, the realisation that whilst I've accepted the reality, others believe this reality to be "most disastrous".
Difficult to work out how to react in that way.
(Meanwhile, I'm hoping with all my might that my mentor has got better chairs in his new office. I very nearly got stuck in the office he was in last week - low chairs with a slight spring and I don't mix. Having to get help to get out of a meeting is a wee bit embarrassing...)
I guess, after years of being "mentally" "unwell", I've never quite had the sympathy in the same way that a young(-ish) "physically disabled" person gets. Especially as I'm clearly deteriorating, at an age when most others are flourishing. However determined I am to live life as it comes, I have to deal with others. With their expectations, their sympathies, their thoughts on disability (whatever that may be).
It is weird, given that a year ago I had a diagnosis but outwardly looked OK. Now I'm with stick, with mobility scooter, with wedge cushion under my arm and considering when to try out wheelchairs - with a view to knowing whether they are feasible or not.
I've come to terms, as much as I can do at this present time, with this. Now I just need to deal with the world as they deal with this too.
That wasn't something I was expecting.
Coming to terms with my body myself, was step 1.
Letting those around me start to come to terms with my body, that was step 2.
General public, or those I only come into contact with infrequently, isn't something I had factored in. If I accept me, if my loved ones accept me, I reckoned I'd won the battle. Turns out there is a whole other battle out there.
A smile, a shrug, a "what happens, happens" attitude is my current method of attack. What will be will be. I've proved myself stubborn enough to deal with most things, this is just that yet another thing.
Stubbornness has made me fairly secure. I'm determined enough to become an academic that I will become an academic. Just got a couple of years, a vocation to explore, a body to live with, a PhD to start/complete and a life to life in the meantime.
Furrowed brows aren't necessary. Sympathy neither. The occasional open door would be great, especially in a place full of heavy fire doors, but I'm not ready for people to all fight to open the door for me. Not yet, not never, methinks.
Ready to live with being me. Not quite ready to live with others treating me how they expect to treat me.