I walk with a stick. It's not for decoration. But you'd be amazed how many people think it was.
I didn't always walk with a stick. I wasn't always incapable of walking up stairs using both my legs. When climbing stairs, my knee, ankle, and sometimes the bones in my feet didn't used to crack. I used to be able to wear sandals without my right toe trying to dislocate. I didn't used to know that a tin can on its side can put dislocated bones in the bottom of your left foot back in place. I didn't used to know the exact sequence of standing on tip toe whilst wriggling your ankle that would stop the randomly dislocated foot bones going into your ankle bone go back into place.
I didn't used to process my little finger dislocating and relocating again in seconds as 'stinging a bit'. I didn't used to have such screaming pain as the muscles in my palms contracted every morning that my finger dislocating as I half woke barely registered on the pain scale. My spine didn't used to crack, my neck didn't used to struggle to hold my head up. My left eyelid didn't used to sag worse and worse the tirder I got and I didn't used to have blurred vision like my toric contact lenses had shifted so they didn't correct my astigmatism even when I was wearing my glasses.
I didn;'t used to carry a letter from my GP explaining that I am autistic and my joints 'spontaneously dislocate' and in certain situations I needed a carer with me at all times. I didn't used to be unable to bend down for longer than a few seconds without fainting - or sometimes feel my heart rate race away after a period of sitting down, or it doing the same thing 20 minutes after I'd gone to bed leaving me feeling like the bed was falling away from underneath me. I didn't use to heal quite so bizarrely nor be covered in random bruises or broken capillaries. I didn't used to have screamingly blue veins up my arms and across my chest. I didn't used to have Reynauds so badly my entire hands go white, the skin puckering and rippling where the blood has disappeared, making them look like a corpses.
I didn't used to have to wear lipstick to cover my blue lips, or to make me not look so pale and sick. I didn't used to have to avoid shoes with a heel. I didn't used to have to psych myself up for the inevitable pain each morning as I stiffen up each night - each movement carefully measured and braced for, the final act of standing resulting in swearing. I didn't used to have to think before I stood up, both to make sure I didn't get dizzy and sit straight back down again, or that some bones had become misaligned whilst I was sitting so that standing pushed them out of joint. I didn't used to have to be careful putting shoes on in cases it dislocated my knee, or the bones in the top of my foot. My right lower rib didn't used to float, meaning it slides when I bend down when sat down, before sliding back when I resume an upright position.
I didn't used to react so badly to sticking plasters. They certainly didn't used to take all my skin with them when I pulled them off. I didn't used to have to be so careful of shampoos in case they rendered my scalp and itchy irritating mess. I didn't used to bump into things so much. I didn't used to sprain everything so easily, turning ankles in socks on our kitchen floor, or spraining an elbow just by sleeping. My little finger didn't used to stick out at a funny angle because I've now dislocated it so much it's not going back into its socket properly.
Life used to look very different. I didn't know I was 7 out of 9 on the hypermobility Beighton score. I didn't know I was autistic. I didn't know anything as it turns out, and life is very different. Not because I do know, knowing doesn't change the facts. All of the above are facts. Cold. Hard. Immoveable and inarguable with.
The following is how you make me feel about all this. You make me feel like a failure. Ashamed for struggling with all this. Ashamed to be ashamed that my illness is now on my face, writ large and obvious for all to see. Ashamed that I can no longer choose to leave the stick at home and pretend everything is okay. Ashamed that even though dislocating my finger stings a bit, that the pain from everything else is so unbearable in that shadow place between sleep and awake that I cry out with pain and I dream I'm crying out in pain and then I wake and I actually am. I am ashamed that there are days, rare, perhaps 2 or 3 in a month where all of this gets on top of me, and the brave face I put on to the world slips. I am the woman who after listening to the scraping of a scalpel inside her left arm for 10 minutes will go into the loos and cry alone rather than letting on for a second to the doctor and her assistant anything is wrong.
I am the girl you see with her eyes closed breathing slowly with a look of pure concentration on her face as she deals with the pain of another dislocation or another bone clicking back into place. I'm the girl who was on the train reading the newspaper at 90 degrees because her neck simply couldn't hold her neck up any longer. I am the girl you see getting off the train and waiting at the side of the platform with her case, waiting for all of you all to go by at your normal pace so she can bring up the rear and hold no one up.
I am considerate. I am controlled. I am proud. So very proud. And I don't let any of you see.
Shall I tell you what this gains me?
Comments. Oh the comments. At a convention this weekend we got told by a volunteer she'd kill for a wheelchair right now.
The assistance buggy I was in on Sunday night being taken to the train at Euston acquired a joyrider 'just going for a joyride' he said.
The chap, also at the convention I went to asking me to sit on a chair, with rows and rows of people stood behind me, on a major thoroughfare.
The comment by an attendee that 'I don't understand why they came, they should have know it would be hard'.
The comment by a friend 'make sure the whinging is far, far outweighed by the good days'.
None of you know. None of you. So here is me telling you. You see my stick and you see someone 'not quite disabled', I'm sure. I'd be in a chair if I was actualy disabled, you think. Since you're obviously not, suck it up. If you think it's going to hurt or be difficult, stay at home, shut up, don't moan, don't whine.
I'm sick of being silent. Being silent makes you invisible. It sucks the life out of you, actually. Suffer quietly, if you're going to suffer at all. Don't make a fuss. Don't hold people to account for what they deny you, their ignorance and their misunderstanding. Well isn't that terribly British of us, to expect people to have a stiff upper lip, even in the face of a body which is slowly falling apart. Don't say anything, deal with it on your own. Don't mess up our timelines and our lives with your pain and suffering, we're not interested.
Well. Some of us, the evidently weak and pathetic, occasionally we need support. We don't have perfect families and perfect friendship groups. We can't just call someone and ask someone for coffee beacause we don't have those kind of friends on the end of the phone. The web is our friend, it contains our friends, it contains our support. Connecting with other people who understand is all I've got. Sod sympathy, I don't want you sympathy, sympathy doesn't make the pain go away. The only thing that is making this manageable is knowing I am not alone. That there are people who care - to post cute pictures, to send hugs, in notable instances to send books containing explanations and wisdom. It's more than the NHS has managed to give me so far.
And yes, I am angry. Angry at myself, angry for staying silent and being so terribly British about this. I am hurting. I am suffering. And every single day I put on a brave face. I make the doctors job 'so much easier' by taking the weight off her. I get the assistance guy at Euston thanking me for being a decent human being and having the same ethics and moral codes as he does. I get volunteers telling me 'last bit to go hon' as I re-enter the convention because I want to be there and I'm not going to let this shit beat me, not going to let this stop me from having fun.
I am autistic, my joints spontaneously dislocate, I am in chronic pain every second of every hour of every day, even when I am sleeping, I sometimes have ridiculous levels of anxiety.
I make people laugh, I am happy and shiny at them. I am a good friend, a half decent not auntie, loyal, fierce and a warrior.
You see every single day I could choose not to get out of bed. And I do. And sometimes, I go and do awesome things that take every ounce of strength and determination I have and I do it anyway. So don't you dare tell me I quit. Don't you dare tell me I can try harder. Don't you dare tell me I shouldn't have come if I knew it was going to be this hard.
I am a human being. I have some challenges. And I am a warrior.
