When illness finally forced me to stop working I felt like my life had also stopped and I would never feel like a complete and useful person again. I felt like I was a failure, like I hadn’t tried hard enough and I had let everyone down – let myself down. I didn’t know who I was anymore or what my purpose was. Then slowly, very slowly, I started to find myself again. I found myself through self-expression, through creating, through being creative. I had always been a creative person but that had been put on the back burner a long time ago – over the years of study and work and trying to carve out where I thought my life should be going whilst struggling with chronic illness. Because that’s what you’re supposed to do you know; go to university, finish your degree and then get a job – you’re set for life. But what if life doesn’t go according to plan? What if chronic illness gets in the way?
In 2011 a few months after my Dysautonomia diagnosis, I journeyed to Spain and walked the last part of the Camino de Santiago (roughly 120km). I wasn’t sure if I was going to be able to finish, but nothing was going to stop me from trying. It was the experience of a lifetime. I was slow, I had to have regular breaks to take my medication and I had to alternate between staying overnight in hostels and hotels so I could be sure of a decent night’s sleep, otherwise I wouldn’t be able to keep going. I had a broken bone in my foot and I didn’t know. I sprained my ankle, had infected blisters and back pain. It was hell and I loved it – I blogged about it briefly. Many people undertake a journey like that hoping to be struck by a profound spiritual experience, but instead I found life along the way – so much life! And hope. And my new motto for living: I was complaining to an older Spanish man that so many people were passing me, that I felt slow and that I would take a long time to get to Santiago. He said that was ok because ‘Santiago will always be there’. It had been there for centuries and it would still be there no matter how long it took me to walk. Lightbulb moment! He probably had no idea how much of an impact those words would have on me.
I believe that having a creative outlet is an important part of living a balanced and happy life for any person but that it is essential for those of us living with chronic illness – to your own individual capacity of course. I hope that through this blog I can show that chronic illness doesn’t have to be a barrier to enjoying life and making something special. Sure it makes life harder and often means having to find new ways to do things but it makes those living with it tougher.
As you can probably tell, I love journeys about as much as I love my creative adventures. I am still finding myself, still finding new things out about myself and I have enjoyed this journey of self-discovery – even if I don’t exactly love the means by which it has come into my life and am more than ready for the hard part to be over. Craft and being creative teaches you a lot about yourself – it teaches patience, it teaches you how you work, how your body works, how your mind works. It teaches you how to express yourself and be confident and then there’s the pride and sense of accomplishment you feel on completion of a new project! And like Santiago, creativity will always be there, it is a dependable constant. So your newly completed dress may not be quite the same as a centuries-old cathedral with an old Saint’s bones in it, that would be a bit odd, but the concept is similar. No matter where you are in life, no matter what is going on, you can always pick up a craft project, learn a new song or routine, start something or come back to it – it will be waiting for you. It will always be there, you can take your time even if that means only a few minutes at a time. It doesn’t take a mammoth physical and spiritual journey for everyone to realise these things, maybe you already have, maybe I just learn a little slower or a little differently but that is my reason for doing what I do!