Are we there yet??

Are we there yet? Long car rides with children often elicit this question. My little brother was always asking this question when we went on family car trips. Me, on the other hand, I always enjoyed the 'getting there' as much as I enjoyed the 'being there' - wherever 'there' was! I'd spend weeks carefully looking at the route, selecting the right books and entertainment, putting together a playlist of music. It didn't matter if it was Kiama or London, I'd look forward to the journey.

I've always seen my life as a journey, and lately I haven't been enjoying the road I'm on. It just seems like everything is too hard right now. I thought I was 'getting there' with accepting my new life. But finding out I'd been lied to by the hospital has thrown a real spanner in the works. And getting such shocking news right after I'd got really fabulous news has sent me spinning. I haven't found my north again.

Trying to find support after a stroke has been a real issue for me, particularly in recent times. I’ve noticed a real lack of awareness and support for people who’ve had a stroke, most particularly those who are young. We’re expected to just get on with it. But there are times when I have questions. Where I just want someone – anyone – who understands what I’m going through. I can’t even put words to what I’m going through sometimes. I want someone to talk to. I want someone who's young like me. Who's had to face the things I'm facing. Who gets the reasons why I struggle with things. I want to be that for someone too. I've always been a 'helper', a 'listener'. When I was diagnosed with type 1 diabetes I met other type 1's my own age, even went to camps with them. I was surrounded by people who were going through adolescence with a chronic and often unpredictable illness. Some I remain friends with even today, 20 years later. We were there for each other, we gave advice, we listened (we still give advice and listen, we're still there for each other).

Looking back, I’ve gone through most of my stroke journey alone. There wasn’t anyone who could say “I’ve been there.” Who could listen to my frustrations and struggles and triumphs and share their story too. If you look at other diseases and disabilities, cancer for example, there are networks of people ready to support each other. Where is the network of stroke survivors? I know there are groups, but there are none in my area. I know there are online communities, but it’s just not the same as sitting with someone over a tea or coffee and sharing the journey.

I realised recently how totally isolated I’ve become. My social life is non-existent. Now I'm facing a new stage in my life, one that I can't even share with my close friends yet, and I don't know any other young stroke survivors who have gone where I'm going. There is no road map for me. There are no other travellers who can point out the best place to stop for a break or tell me where I can get the best pizza in Naples. I don't have my route planned, I don't have a playlist selected, I don't even know what I should read.

I know we all want to put money into research so we can get better treatments and make life easier for survivors, but all the research in the world and all the technology can't replace the human experience of connecting with other people. Of sharing our stories face to face, of sitting with someone in their dark times and saying "I've been there". I can't be alone in this.

Now I'm the person in the car asking "are we there yet?".

And I can't honestly say when I'll be back to my old self. I can't answer my own question.

Anyone who's travelled with children knows you need some sort of answer when the kids ask "are we there yet?". You need a plan.

I don't even see anyone interested in making a plan.

Or am I the only survivor in the Blue Mountains/Nepean area who feels alone and unsupported?

Are we there yet...?