“We’re all capable of the most incredible change. We can evolve while still staying true to who we are. We can honour who we’ve been and choose who we want to be next.”
This is wonderful. It is part of why I love The Good Place too. It is relentless in this belief. That we can always stop doing what we know is hurtful and change. And we do not have to discard who we were but recognise we need to adapt now.
There is nothing there that says this will be easy though.
And you may never ever find the world changes with you.
I am dealing with this myself. I’m pretty sure this is where a lot of people will click away but yes health pulls no punches here.
I have had to change myself continually due to my disease. As a person I used to thrive on changes and challenge. Now they can be barriers. No matter how I approach them. How I approach things though affects my own sense of self.
I was 12 when presented with a complete change in perception of who I could be And it was a good change. Prior to that I was limited by what my teacher saw in my messy handwriting. They ignored my reading comprehension and ability in maths. After that offer though I could visualise myself in STEM. I was able to see a chance to become an actor.
So I chose both. I dedicated my schooling to both. Which meant never ever having a free class slot because obviously I had to do all the science and maths classes and support the theatre stuff with English. And I also chose to continue to think about costume and art when it wasn’t supported at school. It wasn’t all about getting grades, it was about learning everything.
And when I was offered the chance to challenge my body I started stunt training.
Oh I see all that now as privilege and I feel so incredibly lucky to have had those opportunities to think of myself as limitless.
I’m not saying I was not scared. I was scared a lot. I got some awards but the power of them and what they meant about my ability sort of never clicked. One of the downsides of being a high achiever in a community of high achievers. Self worth is complicated but it is built from within and feedback from the world.
Health has stripped away all the protections I had put in place to protect me from my internal conflicts of self worth. I kept myself busy constantly and always had something else I could do.
My diagnosis was practically immediate because of the severity. I was right at the start of a potential acting career and I lost it right when it was the most exciting and should have been the most magical moment of my life.
It took a little longer to realise I could not go back to academia though. My BSc would mean my chances at a Masters or PhD relied on essentially doing the grunt work to support research of others. This is in part because science is expensive and the kind of science I wanted to do required heavy investment in lab equipment. Equipment that was overseas not here.
No one was going to risk their research on someone who needed a very flexible timetable.
So I threw myself in community work. And my costuming.
The work just to have this post published? I recommend anyone who is passionate about sharing their work to focus on front end stuff. Self hosting is mostly back end not content. I would love to just work on content. Another series of barriers. I’m not sure I’m going to want to make a change I think I will have to, but I might.
However. Right here and now even if I can’t be who I was I can look back with respect for what I did. I am not sure I’m going to like everything about the future but change is happening.
One of the problems with having known health issues is that it becomes the defining filter. If people are scared you may not be able do something they preemptively don’t ask you.
If they are scared they will make you worse, they won’t offer the risk but will instead protect you the way they know will guarantee no risk.
Having a new partner, new job, new home. All of these are expected and accepted as part of maturing. Health is too often viewed as being about willpower and so if health gets in the way you simply have not tried hard enough.
If I have to cancel it is because a key element is missing. That is the pin everything else hangs from. If it’s not there is is literally unsafe. Not uncomfortable. Often the solution is there but I do need it to be there.
This should not mean never ever trying, or just presuming. It means I have to be very sure, and then I can build up to it and prepare for after.
And often I am very scared of asking for that pin.
It might be financial.
It might be to have someone with me who can see when I am literally about to pass out. It’s fairly easy- I just stop. The solution is very easy unless I can’t reach it. I need to lie down and have some electrolytes. These fix 99% of the problems I have. Or at least let me continue doing the fun thing until I can get home and repair. And yes I do plan for these but people and the world are not predictable.
Also, health issues do not protect you from “real life” issues. At all. There is not a special pass we are just given. And certainly none for life.
I think this adds to the fear in friends, even when all of this is understood deeply. Honestly though, I never begrudge that risk. I run the same risk doing my own health maintenance.
I can’t not share that a risk sometimes pulls my health off balance. But I do try to say that it was worth it on a level of kinship. But I sometimes don’t because I don’t get feedback that time with me was worth the risk to those who helped. And then past experience is what filters that silence in to what I have come to expect.
I start to erase my presence from those I think are being hurt just be being reminded I am here. That preemptive instinct is in me too. To try and prevent a future hurt to others.
And that is the loop I have been in for a while. It’s made more difficult to get out of as most of the communities I am in rely on friendship for accessibility considerations. There is a “just ask” policy. What it means is ask every single time even though 20% of our population is disabled and we should be able to have the system work for all of us.
I currently have that power right now in one community and I really dislike it. I feel that it should not be up to me it should be built in the system, but fear of that being abused is really high, and we see this even in the public policing of who looks like they should have access to a parking space!
I have a very high level of compassion but who could just assume that? Friends. And thus the problem. If it’s only friends who know how to get that help within a structure with rules then that’s when problems arise.
As a community of communities we try to avoid people abusing systems for those who are vulnerable in ways that make it harder for those who are vulnerable. I mean it’s in the very word.
So back to the quote. I try to hold on to this. Challenges are not always going to be immediately won and I may not even win at all. That is what a challenge is. It’s not about input and output.