Helena: My Name is Helena and I live in Sussex with my husband David.
The Impact of the diagnosis was absolutely huge. It doesn’t feel as big now, but when it first happened it felt really big. It just kind of engulfed everything. It felt like I kind of stepped into a different world with all these strange words like posterior cortical atrophy which wasn’t something I’d even heard of. I was completely floored and just didn’t know what to do.
David: And it was compounded by the fact that it was at the beginning of first lockdown and because Helena was first diagnosed with a visual impairment we went from thinking there was an eyesight problem that could be fixed to realising that it was something that couldn’t be fixed. We had no reason to think that the situation was not stable and something that we could adapt to. But then we got the big diagnosis and that was devastating because it completely changes your whole view of everything. The whole rest of your life is completely redefined and the life you had envisaged is just taken away.
Helena: It just completely challenged my view of myself and who I was, so it was a sort of existential crisis as well. One of the big things that happened after about a year was meeting other people with PCA face to face and building relationships. And they are real people, not just a label, just like we aren’t a label.
Helena: I kind of look back now and think, well, there was quite a lot of creativity in some of things I did, for example around cooking, but I also grew up with parents who painted and interestingly, I think that completely put me off!
To me now creativity means self-expression and a way I can explore what I feel without it having to involve words, which can get in the way. I’ve been going to a group called Inclusive Arts and they’ve been really good and it’s made a huge difference to me. I started to discover that there was more out there in terms of creativity. With PCA, your visual world goes a bit bonkers, which I think gave me some freedom to not have too high expectations of myself and what I was making, so that it could just be entirely about what I was feeling. It could just be a visual representation of something that had some meaning for me and I could be more experimental.
David: For me, I’ve always sung in choirs and other music groups, but it was always with a set of rules, and I’ve come to realise that it’s the feeling that is what it’s all about. We were involved with Music for Life with Wigmore Hall and that was brilliant, with music students who were trying to respond to the emotions of people in similar situations, even on zoom. Although it was music, it turned very quickly into something that was about a broader view of art, because we were talking about the things that were going on around us in nature, like the first crocus or seaweed on the beach, so we started to see things around us, things that you might usually completely ignore. It really challenged my view of what the arts could be and how they relate to one another, and also how it felt to be creative with other people.
Helena: I think getting involved with artistic things has been enjoyable, but it’s also given me a sense of achievement. When people look at a painting I’ve done and respond positively, that makes me feel good.
“There were times early on when I was really cross and angry with everything, and I would make something and be able to say to David, “this is how I feel!””
David: I think it has been an important part of our journey together and there are practical aspects too, like I’m doing most of the cooking now. I’m learning and nowhere near as good as Helena was, so it can be quite ‘experimental’. In the winter I got into quite a good series of homemade soups which were very experimental at times! But it was a nice thing, I would get up early and peel and chop a load of vegetables and shove them in the oven and roast them, and there was something very satisfying about that. We’ve always gone to museums and things but now we might go to something that isn’t like a headline exhibition and find something quite moving, even if it’s about something not massively important in the grand scheme of things. We also watched Grayson Perry’s Art Club and through this I began to really understand about how art was about how people have a need to express themselves.
Helena: Yes, there were times early on when I was really cross and angry with everything, and I would make something and be able to say to David, “this is how I feel!”. I was feeling more and more compressed, and I couldn’t get out of it, and I was stuck. It felt important to have that outlet as an option when I was feeling that way. Having a strategy for what to do with some of that energy is, I think, quite good.
David: The other thing that has been important is getting out and exercising and being physically active outdoors to deal with the stress that comes with a situation like this. There are times that I feel that I’ve just got to get out and run and get my heart going because that sort of resets something in me.
But there are also times when just looking at and enjoying things is important. We’ve been rewilding our garden and it’s been really satisfying relinquishing control, letting the garden do its thing and having a very sort of collaborative relationship with it. Most of us spend time trying to convince ourselves that we’re in control, when we’re not so it’s good to find some way of expressing that. And we’ve certainly had more wildlife, although in the summer with all the insects, we’ve found that one of the most hostile environments we go into is our own garden! But the birds love it and sometimes we look and there must be 50 sparrows out there squabbling and it’s great! Or a whole patch where the goldfinches just love the seeds, and they are just waving about on the tops of these stems. Or some other days you get a flock of starlings descend and it’s just good. I like not being in control.
Helena: It’s growing on you!
David: Yes, I mean it’s just less stress if things don’t go the way you want. It’s just going to be whatever it’s going to be.
“We’ve been rewilding our garden and it’s been really satisfying relinquishing control, letting the garden do its thing and having a very sort of collaborative relationship with it.”
Helena: We’ve always done a lot of walking, and still do. I love to get up high, as high as we can and then every so often there might be a moment of inspiration, like a flash of light or something. There was one time walking on the Downs, and it was around the time of me beginning to accept what was going on and I was thinking, “well okay, this is the path that I’m on now. This is my path and I’ve got to walk it as well as I can.” And for me, there was also a feeling of, well, a lot of people have also walked down this path before, there are a lot of different paths, but this is the one I have, and I have to make the best of it. But sometimes we go back to places where you have lots of memories, and that can be difficult.
David: The nostalgia can be quite powerful, and some things just aren’t open to us anymore. Physically and logistically, it’ too difficult, so there is a loss. We know there are going to be more tough times ahead but if you think about where we were immediately after the diagnosis, completely crumbling, I think we are surviving.
Helena: I think we’re doing more than surviving!
“This is the path that I’m on now. This is my path and I’ve got to walk it as well as I can.”
Helena: I did think about this a while back and I thought, if I if I encountered me at the beginning now, what would I say? And I think the main thing I’d say is “don’t panic”.
David: I think the other thing that was quite important that someone said to us quite early on was, “this is your new situation, but you don’t have to tell people.” You tell people when you’re ready and you can do it in a way that is good for you.
Helena: Basically, you don’t have to make it all alright for everyone else.
David: PCA is a very difficult thing to understand and it’s such a difficult thing to get across what it’s like for your brain to be telling you something that isn’t the same as for other people. Even for people without PCA, you realise more and more how our perception of the world is individual.
Helena: It completely knocks your confidence because you have previously accepted that what you see is what you see, and then all of a sudden everything potentially isn’t what you think it is, and that’s really hard.
David: Yes, so we’re caught in this tension between worrying about the future and thinking sod it, let’s go for a swim in the sea!
“Even for people without PCA, you realise more and more how our perception of the world is individual.”
Helena: Can I take the opportunity to show you my latest painting? I have called it ‘Feels Different’. I wanted to do something with texture because I use my hands a lot more to feel things now and so I wanted to do something that was more tactile. Some of it was done with a brush but I did quite a lot of it with my fingers!