Asperger's,Autism Spectrum Disorder

Finding Yourself After Illness

A few years back I lost my sense of smell and taste, then about a year later, I had coved-19 and even now I am not yet well. My sense of smell and taste is almost back, I think –  I might be wrong, because I was without it so long I forgot what it was like. I smell and taste enough now that it feels a lot more fun to be alive, but I know things are still not as they were because people tell me when it’s me who can’t smell or taste something and not just that there is no smell or taste.

I am still suffering a lot from long Covid as well; everything from extreme fatigue to breathing problems, migraines etc.

To be completely honest, these last few years have been pretty bad and in many ways I put my life completely on hold because I kept thinking I’d get better really soon – soon just happened to turn into 2 or 3 years.

My doctors all told me, a year ago, that this was my new life and I had to get used to it. I refused to believe it and continued to fight to get better and I still do. I do my best to get better and, even though it’s not been a big improvement, I have felt a little bit of an improvement. I don’t have the same kind of brain fog, even though I still have a terrible memory (yes, to the point where I forget what I am saying mid-sentence) and I struggle to learn – obviously my lack of both long-term and short term memory is making it quite difficult to learn new things and yeah, I did start a completely new career in a totally different field 2 years ago (right when I got sick) and it has been the most horrible period of my life, which is saying a lot because I have been through some pretty bad stuff.

So, right now you might be thinking this is sort of a depressing post about how life sucks, and in some ways, you might be right. Only thing is, I don’t want it to be.

When you have been sick to the point that you don’t know if you can ever get better again, it changes you. It changed me. I am not who I was when I started my new career and honestly, I don’t know if I want this anymore. I don’t want to spend my whole life in an office between 8 and 4 in the afternoon writing other peoples code. I still love to code, but I don’t want to spend my life like that.

I have been tired and sick so long, that what I yearn for now is to experience life to the fullest. I want to travel, I want to learn to dive, I want to paraglide and climb mountains. I want to see and feel the world, not spend all of my life in an office.

Before, I thought I could spend my time in an office working to earn money to go on holiday and see mountains and hike along trails near the mountains, I thought I could sit by the ocean and splash about in the water and go to museums and that it would make me feel safe and happy. I don’t want to just feel safe and happy, I want to feel alive and free.

Now, don’t get me wrong, I am not saying I want to go crazy with extreme sports and dangerous stuff, but I know now that the life I used to want isn’t something that makes me happy now and you know what? I doubt it ever will. I am not and nor will I ever be who I used to be. I don’t even really want to go back, I want to figure out who I have become through this period of illness.

I don’t want to be sick forever, but I clearly don’t know how long it will take for me to get physically healthy again either, so I think it’s time for a balance of sort – accepting both where I am right now and that I am not going to accept that as forever.

Then it’s time to explore who I am now and move towards who I want to become. I read all these books over the last year because I wanted to change (links at the bottom of the post to the posts about this one year challenge), and somewhere along the way I started to realise that I was already different – I had changed and because I hadn’t noticed and honoured that change, I was very unhappy. Of course I was! I was living a life I thought made me happy when in reality, I wasn’t that person. I was actually living someone else’s life.

It’s time to live my life – at least to the extend I can. I can’t quit my job, because I need to pay my bills. I can start small and see where I end up, though.

I want to dive, so, probably I should learn to swim and I will. I am. I will learn to scuba dive first, this summer, and then move on to learning how to dive next year. I want to learn so many things I never thought I wanted to learn, and I will, little by little and when my contract at work is up in about 2 years, then I will go out into the world and find a job that I – me, who I have become or has become at that time, will love.

I can’t do that now, because I need to get to know this newer version of me. This person who likes things I never liked and wants things I never wanted. I think 2 years to figure out what I want in life is pretty good. I can explore life as much as possible, while trying to earn money with my day job. If something else comes up, I’ll take it, but if not, it’s only 2 years and my apprenticeship will be officially over and I can move on to something more fun, more in line with who I have become.

It’s not strange, when you think about it. Illness, especially when it is long-term, will often make people see life differently. It often changes people. It makes us re-evaluate life. Being ill is not good, but I am happy that I got this chance to explore a differently kind of life – a life that I have no doubt makes me more happy than anything I could have imagined in the past.

I am not happy at work or in life, but I am happier than I have been in years because I am on a journey towards something more amazing than what I would ever have thought possible. I am on a journey to feel free and alive, something I never even considered before. I thought I knew who I was, but not knowing or feeling that I know, makes life so much more exiting – I love the idea of finding out who I am and exploring life in new ways to find my way back to myself – not the me of the past, but the me that I always truly was somewhere beneath societies norms and expectations.

Kai

Life with Autism Spectrum Disorder is not always easy, but it doesn't have to be impossible. Since I was diagnosed myself, I have been trying to raise autism awareness and share my own experiences and thoughts about life as well as my search for a happy and fulfilling life.

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