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Reaching out

by Chelle Hope

What do you do when you’re not at all sure how to be ok anymore? The well known, well-publicised advice is to talk to someone, which is excellent advice and a great start. What if you feel like your life is a mess and you’re having a terrible time and you don’t know what to do?

Full disclosure: This has been me for a while now. On top of that, what if you have disabilities that can affect your quality of life in a profoundly negative way unless you really have your life sorted, but those same disabilities can also prevent or make it difficult for you to ‘sort your life out’, whatever that means? Also me. 

I don’t know how to be ok right now. I’m tenacious, I know that much about myself. I don’t give up without a fight. There are loads of us out there, disabled or not, who go through stages where they are not ok and they don’t know how to be ok in that moment. I know this because I’ve been on the listening end of such conversations with all sorts of people. It’s a privilege to be confided in. I find it a lot easier than reaching out and hoping people will listen, especially when you don’t expect they know any more than you do about how to make things better for yourself. 

I don’t know what the answer is to this overwhelming feeling of life not meeting my own expectations, which is some but not all of what I’m feeling. I have a hunch it might lie in my interactions with others. That’s where I’m placing my energy right now. I’m talking to people about how I’m feeling and I’m working on plans to surround myself with more people. 

I’m pretty new at this ‘reaching out’ thing. I’ve always done what I needed to do for self-preservation but during these times of undefined and nebulous struggle, I’ve tended to keep to myself. I don’t like to worry people or bring people down and that idea at the back of my head of being a burden, brought on through ableist conditioning, tends to rear its ugly head, too.

Talking to people about what’s going on for me feels raw and it feels vulnerable and it doesn’t always go brilliantly but it’s much better than shutting up about it. Just the experience of talking to people has reminded me that I do have people in my life who I can talk to. That has already been helpful.

I should make it clear that I am not depressed. I’ve had a lot of experience with depression and this is not that, for which I’m grateful. I know that change in myself and in my circumstances will help and I know from past experiences that while it might feel like everything is terrible, it almost certainly won’t take much to make improvements that will affect my quality of life for the better. I also know I’m going to need some help, which is never easy to ask for, especially when I’m not exactly certain of the shape that help needs to take. It’ll probably take some trial and error.

Disability can be a profoundly isolating experience. I know I shouldn’t compare myself to others and for the most part I don’t, but I can’t sit here and say it’s fine that my life trajectory cannot measure up in any objective way to that of my peers and that it’s ok that I’m struggling so much to live the life I want for myself. I feel lonely, not just in a practical sense because I don’t have enough people in my life, but also because I find it difficult to talk to people about the things that are bothering me who don’t share my experiences and who don’t live the kind of life I live. 

I guess I find the isolation of disabled people, including myself, unacceptable because it is fixable. Our society is still not really equipped to provide the opportunities that many disabled people need to have the baseline quality of life everyone should have the right to expect. Many of us have to fight hard for a good life and in my case it only takes a few things to go a bit wrong to feel like I’m really in an uphill battle that I’m not winning.

I’m going to try to get more support in place so that I have more of a safety net and so that I can work on enriching my life without risking what is already precarious health; not only a tricky balance, it’s sometimes just not an option. I’ve heard many stories of people who were struggling anyway who had their support taken away or reduced. I’m lucky that this hasn’t happened to me, yet. I’m not completely confident though that I’ll get what I need. I suppose I’ll just have to wait and see and come up with another plan if that doesn’t work out.

Right now I’m in the middle of a two-month break from my PhD thesis on medical grounds. Nothing serious; a couple of things went wrong in my life in fairly quick succession though, culminating in a painful bout of shingles with the complication of post-herpetic neuralgia (chronic nerve pain) thrown in for fun. When I can get back to it, researching for my PhD will hopefully, at least at times, be a connective and enriching experience. Even though I’m working on it extramurally while I try and find an accessible house in Wellington, I’ve actually already met people who I feel very grateful to have made a connection with. 

I’m researching disability identity and I will be conducting interviews with disabled people as part of that research. I’m looking forward to that. I need things to look forward to. In the meantime, I’ll plug away at trying to make my life bigger and better in small ways that I hope will add up to something good.

I need a holiday from myself. I think maybe we all feel like we want to escape ourselves, our bodies, our lives sometimes. Whatever happens, there will be changes and you know what they say; change is as good as a holiday.

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