Updated: Nov 28, 2021
By Ally Lloyd
Independence is a real buzzword when you’re a young person, to the point where growing up and independence feel synonymous, and it becomes something to aim for. With a disability, however, independence is a bit more complicated, and at times it feels unattainable. Things that are often cited as the pinnacle of independence as a young person, like driving or solo-explorations of the world, for me with epilepsy range from impossible to unsafe, never mind the more mundane going to university or having a bath home alone.
This doesn’t mean that being independent isn’t something I want or something I am trying to make happen, it just means I am doing it a little bit differently and the last year has included a LOT of learning curves in regards to being independent!
Here are four big things I have learnt in my (very much) ongoing journey to independence…
Practice IS perfect
I have definitely found that one of the biggest hurdles to independence for me has been lack of confidence in relation to doing things independently. Especially when I was first diagnosed with epilepsy, the idea of going into public places at all, let alone by myself, was terrifying. The possibility of having a seizure became a barrier to doing things by myself. But, a year and lots of small steps later I realised that the reality is not quite as terrifying as I had imagined. Yes, there are days that going places independently feels unachievable, but mostly I feel so much more confident in my ability to go places by myself. This has been achieved by a mixture of doing things successfully (the majority of the time), and doing things and them going wrong (the minority of the time). These “going wrongs” have actually been a really important part of building my confidence. For example, this May I was in Birmingham Train Station by myself and had a tonic clonic seizure. A seizure, by myself, and in an unknown place was literally my idea of a worst nightmare and for the following week or so I was very much feeling like never again would I get a train anywhere by myself but soon was able to see that actually, yes, it had been scary and no, I wouldn’t want to ever repeat it, but, apparently the people at the train station were lovely, the paramedics were gems, and before long my mum had driven to Birmingham to pick me up from the hospital I had been admitted to, life kept going! Now, (weirdly?) I feel more confident than ever with getting the train places by myself because I have actually done the worst-case scenario, and everything was actually fine in the end. I have got many a train by myself since, and I still wouldn’t say it feels completely worry free, but each time it gets a little bit easier. Practice, practice, and practice!
2. Options are the way forward
I would say planning is the way forward, but with epilepsy things are anything but predictable and plan-able. So instead of strict plans to make things work, I go with loose plans that have lots of options. I find this works really well for “little things” in terms of being independent, for example cooking for yourself. Beth and I have a reputation for having a freezer full of lentil chilli, which we will have batch cooked, bagged up, and frozen weeks ago. This means that on a good day, we can do all our cooking for ourselves (independently!), and on a bad day all that is required is to de-bag and pop into the microwave, super energy efficient and avoids potential hazards such as boiling water (been there done that) and stoves, whilst still having a yummy self-made tea. Depending on how you’re feeling you can boil pasta or rice and add that, or pop a naan in the oven, or just have it by itself. Having some frozen meals doesn’t commit you to eating them every night (not that you would know this from me and Beth’s eating patterns!), but it does give you the option on a bad night. Options are golden.
3. Independence isn’t everything!
This is probably the most important one and also one that I find the hardest, independence isn’t everything! Situations don’t always need to be seen through a lens of independence. Instead, look at a situation and work out which way of do that will make you happiest, whether that is doing something completely independently, partly independently, or with zero independence. Recently Beth and I went wild camping in Skye together, and we had the best of times. For most friends going away together they wouldn’t be questioning whether they had made this decision because they wanted to go with a friend, or because they would be unable to go by themselves. In cases like this disability often gives an acute awareness of independence when it’s not necessary and actually an independence “lens” was irrelevant, we talked about going, and went, because we were like oh this would be fun, and it was. Simple as that! Same goes for mundane things like going to the shops, I would actually enjoy going to the shops with a friend more than I would going by myself, there is no need to over think it and question whether this I took this decision because of an inability to be independent in this situation (although this doesn’t always stop me!). Enjoyment of something is separate, and superior, to independence.
4. Tools and Adaptations
Often its helpful to look at the barriers to independence as practical problems that can have practical solutions. Beth and I chatted about this and realised that this is something we do all the time without even thinking about it. For example, if opening tins is a barrier to making tea independently, then an electric tin opener can effectively remove this barrier and solve the problem. Other times, tools don’t completely solve problems, but they can make it easier. For example, if I’m going somewhere by myself, wearing a medical ID bracelet makes it easier as it alleviates some stresses around safety for both me and my friends and family. This kind of problem solving soon becomes second nature and you start to see options to make situations more independent everywhere, from switching to using a pill box so as to confidently be able to self-manage medication, to using a close cup to carry hot drinks around if you're feeling a bit unsteady. Adaptations are a really easy way of being independent.
What are your guys experiences of independence? Do you have any tips on how you manage being independent? We would love to hear!
(Originally published 26/7/19)