It’s Not a Priority

I’ve been musing on this post for a few weeks now. Having finally come to the conclusion that I’m not going to stop feeling a) too tired and b) too busy to write it, I’ve decided I may as well write it anyway, tiredness and busyness be damned.

So: I’ve been hearing the same comment, or perhaps more accurately the same type of comment, over and over recently and there seems also to be a particular type of person who will make such a comment. And it’s that kind of comment that is very obviously well-intentioned but still very hurtful but it never really seems appropriate to explain why it is hurtful at the time and besides it has taken me a while to figure out quite why I feel so hurt by it.

The comment is always some variation on “Hopefully you’ll be walking around without that thing soon!” where “that thing” is the walking stick that means I’ve been able to keep some measure of independence over the last year and a half. I then point out that it is incredibly unlikely  that I will ever be able to walk unaided again as standing and walking is so painful and exhausting for me that I cannot do it unaided, my stick is the only means I have of walking at all and my condition is lifelong, there is no known cure and the treatments that currently exist are mainly pain relief and resting. At this point, the person who originally made the comment tries to tell me to “Stop being negative” or that I should “never give up” and tries to give me medical advice despite not being a doctor and only having a surface level understanding of my condition. This is usually either a dramatic increase in exercise (something that could severely worsen my condition), some rather dubious change in my diet or the suggestion that really I’m just depressed and if I stopped thinking negatively I’d have boundless energy and be able to walk unaided and pain-free. Ha, as if – and incidentally, I do also have depression in addition to my fibromyalgia. While the two doubtless must interact, it is certainly not so simple as “Stop being depressed and you’ll be able to walk without a stick again”.

What do all of the people who have made such comments share? Firstly, they see me irregularly but fairly often – less than once a month but more than once a year. Second, they are not themselves disabled or chronically ill (or in the one instance of another person with fibromyalgia doing this, they do not have mobility problems). Third, they see me often enough to feel that they know me and have a relationship with me (as a friend, relation, tutor, porter, provost, regular bus driver, friendly local shop assistant etc) but not actually often enough to see the day to day, week to week effect of my illness and disability on my life. In other words, what all these people share is that they care about me and want the best for me but they are not in a position to know what “the best for Liam” actually is.

It would be sensible for people to accept that the people most likely to know how best to deal with my chronic illness are me, the people who care for me on a daily basis and my doctors. Something makes them forget that and makes them make these comments and I think I know what it is. Fear.
Yes, fear. I think these people who don’t see the days in bed or the regular taking of the three different pain killers, who don’t see me sitting on the floor by the fridge to put my shopping away because going to the shop has left me too tired to stand… I think they find the sight of this young man walking with a stick disconcerting. So disconcerting that they want the stick to go away so they can go back to thinking that everything is okay or that I’m just remarkably tired today and will be fine again tomorrow. The stick makes it obvious to everyone around me that, like it or not, things are not as they used to be, I am disabled and there is no pretending otherwise.

Even if that’s not what is actually going through their heads, it is what their words and actions communicate to me. People who couldn’t (or wouldn’t?) see the problem when I was still holding on to walls and furniture and other people to walk suddenly saw it when I started to use a stick. And they started to repeatedly suggest I stop using it and to become increasingly adamant that I won’t always use it the more I insist that I need it. People started to say that my condition seemed “better” or “worse” based solely on how close to a normal gait I managed whilst walking without considering that perhaps just like them I walk slower when I am tired.

I know I can’t see instead people’s heads and know what they’re thinking or feeling but the message I get over and over from people is: “You should prioritise looking more ‘normal’ and less disabled. We don’t want your disability to be so glaringly obvious and if we can’t make it go away then you should at least do other people the courtesy of making it look like it’s gone away. We don’t want to accept what has happened to you, we don’t want you to be different, we want to go back to being able to pretend nothing is wrong. Our way of walking (unaided) is inherently better than your way of walking and you should aspire to walk like we do because your way is inferior”.

That’s the message I’m getting, even though I know people are really only trying to say “I hope things improve” or “I wish you didn’t have to live with chronic pain”.

Here is my answer (or at least, what I sometimes wish I said instead):

“Walking without a stick is not a priority for me or even really a goal of mine. It’s not really that important to me and I don’t understand why it seems so important to you. I much prefer being able to get around using whatever aids are most suitable – whether that’s a stick, crutches, a rollator, walking frame or wheelchair – to being able to walk unaided because without mobility aids I can’t get very far and would need to spend days in bed recovering. I much prefer being able to get around and see the world but looking unusual and moving in a nonstandard way to being able to look and move more or less like most other people but confined to a tiny area.
Please trust me and my health professionals to make informed and considered decisions about my treatment. Please trust me to make informed and careful decisions about my mobility and care needs and accept that my priorities may be different from yours. This is my life, my health and my disability – trust me to manage it myself and ask for help or advice if I need it.
I don’t consider using aids and adaptations or finding new ways to do things to do every day things to be “negative thinking” or “giving up” – for me it’s just realistic to modify the way I do things to make them easier, less painful or less tiring for how my body works now. Continuing to try to do things the way I used to will only hurt and frustrate me whilst allowing others to pretend nothing is wrong.
I don’t care if how I do things like walking or carrying things or putting on a coat looks weird, I just care about achieving what I’m trying to achieve with the least pain and energy expenditure possible. Worrying about how odd it looks would only make these things more tiring. And besides, variety is awesome.
My way of walking (and dressing and eating and talking and being…) is not inherently inferior to yours and trying to make myself look more like you, trying to assimilate into a non-disabled people’s culture, really wouldn’t do me any favours. Just like you, I’m just going about my life trying to survive and to live and be as awesome as I can be – I can live without the pressure to conform as well.
My body has changed and I have adapted to it. There’s no sense trying to force it to change back by acting like the change never occurred. My body doesn’t work like other people’s bodies, there’s no point pushing it to measure up to rules and ideals that were never designed to accommodate it. I can only work with what I have and I have a body that needs a bit of extra help to walk, a body that needs rest, a body that needs pain relief – a body that needs me to find ways to work with it not against it. I have a body that, despite everything, I love and care for and who would subject that which they loved and cared for to standards it would be bound to fail?

Walking without a stick is not a priority for me. Maybe one day I’ll do it, maybe one day I’ll need a wheelchair, maybe I’ll always use a stick. None of these is inherently a “better” outcome as far as I’m concerned – as long as I can get to places and live my life I don’t really care how I move. It’s just not a priority.”

Note: This is about how I personally feel not about how “disabled people” feel or should feel. If you feel differently about your own mobility problems, that’s okay!
Further note: Yes, I still go through periods of grief and upset over my inability to walk unaided. I cannot always manage to feel okay about what has happened to me and frankly it would be weird if I was able to easily accept this. HOWEVER I do have to accept that I have mobility difficulties now, that they are unlikely to go away and that I need to find ways to get on with my life in the body G-d has given me cos no one’s going to bless me with another one.

Hope

I actually said it out loud today and because I wasn’t immediately told to shut up, I’m going to dare to say it online too.

I am so disabled by my various impairments (I counted and I have ten different disabling conditions and illnesses so far) that whether or not I will ever be able to work a full time paid job or work for money at all is in doubt. Like pretty much all children, it was always assumed when I was growing up that as an adult I would work and earn wages. There was no question of “if” I would work, only “what” I would attempt to get employed to do. Now there is a question of “if” I will ever be able to work and, whilst some days that uncertainty fills me with fear, much of the time I actually find it quite…. Freeing.

Yes. I did just say that. Being chronically ill and disabled is painful and upsetting but still gives me a freedom that I could never have if I was still tied to the notion of working for money. Give me somewhere to live and enough food to eat and I will do so much more with my life than I could if I had to work full time. I will write and I will make friends and I will fall in love and I will parent children. I will help people, I will try to make the world a better place.

Being free of the expectation of work makes me feel free to be and do whatever I need. Free to disregard assumptions about what adult men are supposed to be like and follow my own hobbies, my own dreams – no matter how others might see them. My future is massively uncertain, and yes that scares me, but from that uncertainty I draw hope.

Hope that I can craft for myself and those I love a life that is joyful and full of caring and love. Hope that despite the ridiculously unlucky hand I was dealt in life that I can play that hand beautifully. Hope that I can continue to have the strength to disregard other people’s ideas of who I should be and how I should live and live a life as unconventional as I am.

I don’t always feel like this and I’m surprised to be feeling this way whilst writing my PIP form. But I know that disability is far from all bad. I love the people I’ve met through being disabled, I love the ingenuity and creativity we as disabled people tend to develop as we navigate a world that wasn’t built for us, I love how strong and tenacious we become and our sheer audacity in continuing to demand lives that we can live not merely survive.
Being chronically ill and mentally ill may have taken away the life I thought I was going to lead – but it left more than just nothing in its place. I have been left with the challenge of creating a life around myself that suits me and mine.

When I’m struggling, I hope I can remember that this is what I’m fighting for. Not an ordinary life, not someone else’s idea of a “normal life” but a life for ME, a life that I can live.

 

My Depression

Content warning: frank discussion of symptoms of depression, including involuntary thoughts and suicidal ideation.

My depression is worse than I’m used to it being and that’s eaten a few planned blog posts. Some of them are sitting half finished in drafts, others are still inside my head struggling to be born into words.

I know that if I don’t post here somewhat regularly, I’ll end up not posting at all – and i don’t want that. I love blogging and I love the way it helps me feel connected to so many other people. I want to keep doing this.

So:
Here’s a blog post looking my depression right in the face and describing it. I’ll tell you what it’s like and what it does and then I’ll press “Publish Post” and I will not just have a finished blog post, I’ll have stuck two metaphorical fingers up at the illness that wants me to stop blogging.

Depression for me is when my involuntary thoughts become more than just a murmur in the back of my head and become so loud that I can and do confuse them for my own thoughts. I have involuntary thoughts of suicide, of death, of harming myself and of destroying things – pretty much all the time. Most people get those from time to time and it doesn’t mean they actually want to do any of those things. When my depression gets bad, those thoughts seem to occupy so much of my mind that there doesn’t seem to be room left for normal thoughts about “What’s for dinner?” nevermind room for rebuttals like “Actually, I quite like myself and my life thanks” or “No, punching myself in the face will not help”.
And my depression is greedy – it feeds off things happening in my life like benefits claims and being far away from my siblings and makes them about how rubbish I am as a person. It feeds off my anxieties and insecurities. It plays tag with my eating disorder, PTSD and my chronic illness by giving me thoughts of things that trigger me, by exhausting me further, by telling me I am weak for being in so much pain. My depression hates me and it wants me to hate me too. It is the ultimate bully but unlike real bullies this one knows me almost as well as I do and goes home when I go home.
My depression knows all my secrets and wants me to be ashamed of them. My depression knows I can’t fight it on my own but tells me my friends are better off without me. My depression knows I miss my siblings but tells me nothing in my life could interest them because all i do all day is be ill and try to survive and how boring and pathetic is that? I pick up the phone and put it down again. I open and close the facebook chat box again and again.

If it were just the thoughts, maybe I could cope. For a long while, I did. But the thoughts bring up emotions and memories, cruel words that were spoken years ago to a very different, very scared little boy. Those emotions take their toll and they spill out of my eyes as tears and course through my limbs as pain. When I’m talking to people, those emotions blend with what they’re saying to me and my depression suggests things for me to say. It’s fond of “Fuck off!” and “Leave me alone!” and “You don’t love me” and I take a deep breath and say what I want to say instead. Then my depression tells me I’m awful for even thinking of saying such hurtful things to my friends. How ungrateful. How selfish. Or tells me I’m manipulative for not saying “what I really think”. I think my depression is the one who’s being manipulative here.

I struggle. Because the problems my depression is feeding off are real: I am ill, I am distant from my siblings, I am applying for disability benefits, I am signed off my course… But the solutions it offers me – run away, hide, die, shout and scream, give up, cry until I sleep, eat, stop eating, beat myself up – those won’t help me.

I’m getting the help and support I need. I sought advice about all the problems and I’m going to fix them, one by one. I will live through this version of hell my head has made for me, just like I lived through the ones I’ve had before. Gender dysphoria couldn’t beat me, PTSD hasn’t beat me, panic attacks didn’t beat me. Depression isn’t going to either.

More than that, I’m going to be amazing. Because I don’t hate myself, not always, not really. Because I’m a wonderful person and nothing could ever make me deserve to be mentally ill but here I am and I will make the best of it.

Watch out world, because depressed or not I am here and I’m not fucking going anywhere. I’m staying and one way or another I’m going to make the world a better place. Just you watch.

And i know my old friend depression will come along for the ride but that’s never going to stop me.