Let’s preface this whole post by saying: Normality is complicated and fucked up. I don’t believe normal is actually a thing or anything to strive for, but rather some lofty ideals being forced upon us by the societies or communities we live in. That said, we can still end up in a situation where we’re grieving our own old normal. That is what this post is going to be about. Let us begin with a quote from an older post of mine:
“I have some grief I need to process, of the life I lost. Of my childhood and everything around that. And I need to allow myself to take that time to process it. It’s gonna be a pain, but I think we can do it. “Keep trying to get my life back together — me 2021
There are a lot of aspects to unpack here, but for today we’re focusing on the loss of my old sense of normal, my old life. Why did I lose it is probably your first question? And I guess it’s complicated. I’ve touched upon it before, talking about my disabilities, my lack of abilities, the changes I’ve gone through. The burnout that left me unable to speak and think properly for about 6 months. I’ve talked about the pain I suffer daily. Why it’s hard for me to even write and edit to publish my own pieces. Maybe this article, this post, this blog post, this opionion piece, this piece of musing, doesn’t need to be about how I ended up here, but what I’m going through now.
It’s something that’s come up in therapy, and something I’ve thought about in the past, and tried to formulate and talk about, I even found sections in my journal from about a year ago where I touched upon it, how I need to let myself be sad about what I miss, what I’ve lost.
While not all disability is going to be about loss, it’s not necessarily only about the disability, but also in combination with the pandemic that broke out in early 2020. It changed normal for a lot of people, and people like me who were already isolated suddenly got even more isolated. And there’s been an urge to go back to normal from mainly, I guess, “normal” people. People who didn’t understand that their normal affected our abnormal lives, and isolated us further. This is still on going , and also not quite what I wanted to talk about.
I wanted to talk about the immense sadness of being unable to do the things you used to love. In my case something I miss the most is just long walks, something I was still often doing while I was getting sick, because somehow I managed to keep that ability for a very long time. Today, however, I find that the severity of my POTS means I can’t take those long walks. I’m having trouble finding other ways to mitigate my POTS, there’s no real cure for it, but there are ways to make it slightly “better” or manage the symptons for today.
I have not been able to take the time to grieve being unable to fly home to Sweden since moving to the UK, to stay connected with my family whom I felt I had reconnected with just before I moved, because I was able to and had more energy for a few months. I don’t remember how much I’ve written on here about the summer I had my life back in 2019, I think there’s bits and pieces, but probably even more that needs to be procesed and accepted there.
It was a huge change moving, and I was hit with a lot of things all at once once I did. I think the change in not only scenery but the strains of both viral and bacterial infections, the rate of mold spores (I don’t know why but the UK, especially houses, feel a lot more moldy than Sweden did, different house standards I guess?)., etc etc. a lot of things changed, and I got sick again, and I think because I spent about 2 months in bed with various colds and injuries etc, I made my POTS worse, maybe? I obviously don’t have any definitive proof of this, but I do have my suspisions.
Then I did another move, and I don’t think I’ve even covered my CPTSD around moving on here but I guess that’s for another day, and then the pandemic hit. I didn’t get to find a normal me in the new place I was living with my friends, before we were entirely locked down. I didn’t get to learn to find my way into the city center of Manchester. And I didn’t get time to make new friends, I didn’t get to create the kind of normal I had left behind in Sweden when moving here.
I am not going to blame it on one thing alone, but there’s definitely something to be said about a huge disruption in your life getting further disrupted by events way out of your control. There’s only so many things we can control.
How do we grieve this loss? I honestly don’t know. I guess we have to just take time to honor the feelings we’re having, of what we’re missing, and maybe enjoy the nostalgia when it hits. The memories we made, the journeys we’ve been on. And find other ways to be happy. That sounds painful.
There’s no one way to grieve, but I do think accepting a loss is a big part of it. And accepting it can take years and years, even if you accept that someone is gone, or something is gone from your life doesn’t mean you aren’t also still sad about it. You can still grieve it over time even if you’re trying to move on.
I guess the moving on part is harder when it’s forced from normality, but isn’t that always the case with grieving in general? Either it’s a person, or something that you took for granted that is suddenly gone. It’s very rarely we get to sit down and prepare and start the process before the event happens. Sure, dying family might give you time to grieve them before they are gone, but you should probably cherish them while they are there instead of grieving them beforehand.
So the life I had, the 5 months of extra energy and enjoyment I got before moving to the UK, was definitely something I cherished. I was thriving and I was so happy and I was squeezing as much joy out of it as I possibly could, and thinking about it still makes me incredibly happy and grateful.
I think that’s what I need to do, focus a lot on the good memories I’ve made and that I’ll always keep (unless I suffer memory loss again, goshdarnit). And appreciate my life for what it is now, which can be hard when it doesn’t live up to the standards you used to have.
I think it also connects a lot to changing what standards and expectations you set for yourself. How you give yourself compassion about the things you can’t do. How you recognize your limits and stay within those limits to help yourself. As someone with ADHD this is incredibly hard still, and probably one of the reasons I ended up so bad off to begin with. When I have energy I spend that energy, and want to spend so much of that energy on finally doing stuff that I will go way outside of my means, and I probably wont notice for another few days that it was too much (because I also have ME/CFS, and PEM is a piece of shit).
Every time I’m trying something new through medical support, or therapy or accessibility options I’m always hoping for the magic bullet that will cure all, will fix me so I can be normal again. I want to be able to do all the things I used to do. I miss it, and I’m sad it’s gone from my life. Do I still hold on hope that the future treatments and support from medical teams will make me better? Yes. Hope is what’s kept me alive since I was 12, so I don’t think I’ll ever let go of hope.
It’s okay to be sad about the life you had, that’s gone. For whatever reason it’s not the life you have now. It’s okay to grieve it, it’s okay to long for it, hope for a magic fix so you can join everyone else in their cool activities.
It’s also okay to just be you, where you are right now, and find ways to appreciate the life you love and cherish what you have in it today. And if you’re unable to, that’s okay too.
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