Chloe Wigg shares her experience living with myasthenia gravis (MG), from facing isolation and setbacks in her art to creating the exhibition OMG! She reflects on resilience, the power of community, and how storytelling through art helps amplify voices within the MG community.
Transcript
Hi, my name is Chloe Wigg. I’m a mother. I’m an artist. And I’m a person living with myasthenia gravis. When I was diagnosed, I was lost. I was sick — I was terrified — I couldn’t breathe — I couldn’t swallow, I couldn’t talk.
It was some of the scariest times of my life. My health had disintegrated to the point where I couldn’t practice anymore. I couldn’t even look at my studio because it had become this symbol of everything that I had lost — everything that I couldn’t do.
And my art has always been about resilience and about advocating for people who had invisible disabilities. And suddenly I couldn’t do that anymore. I couldn’t be this champion of resilience and rising above your circumstances, because I wasn’t rising above anything. I could barely breathe.
And then I met all of the wonderful people in the community, and I went, you know what? I don’t care if it takes me 10 years. I want to help this group of people. I can see that there’s a real lack of information out there — but there’s also a real lack of support for people once they’re diagnosed, what to do — how to find help, how to find your community.
And so that’s where I started my exhibition OMG! So it took four years to get rolling and get into thinking. Also, I had to be mindful of my health amongst that.
In those four years of planning and implementation, I spent over 1,600 hours in hospital. I had three major surgeries, two life-threatening events. I was very sick, but I knew that all that was going to happen and I just had committed to it.
My husband looked at me and he said, “Please don’t do this. You are so sick — and it is going to make you sicker.” And I said, “Well, I’m not doing it for me.”
If this was about me, if this is about getting my name on a billboard for money — well, that’s not worth it. It’s not worth the time I don’t get to be a wife. And it’s a time I don’t get to be a mother. And it’s a time I don’t get to dress myself. I have to have someone help me. You know, I knew it was going to make me really sick.
And we know that this is a snowflake disease. We know that everyone is different. So what I wanted to do was use my experience and my expertise to give people a platform to tell their stories, to say what they needed to say, what they thought the community needed.
And what I found — reading between the lines in all of my community consultation — is that everyone was so isolated. There’s some people with myasthenia who are living relatively normal lives. They are working full time, they are interacting with their friends and family — and that is wonderful, and I’m so happy for them. And that doesn’t mean that they are not fatigued and having their own struggles while they do that. But there are also the complete opposite end.
There were people that can’t stay more than a few weeks out of hospital. There are people that struggle even to interact with their family because they are exhausted, medically exhausted. They can’t speak, they can’t swallow, that sort of thing. And that isolation is crippling.
And so I knew that this exhibition had to have a community-focused message, but also it had to help the community in the process of making the exhibition. It had to help people. Not make their lives harder.
I wanted to have one of the — we call them Granny Arts — one of the heritage arts, something that is passed down from grandparent to child to grandchild. The knitting, the crocheting, the tatting, all of those things that you’re doing with your hands. And that seems really silly for a myasthenia group of people who have muscle weakness and stuff.
But what it did was allow people to reach out to their community, to their church groups, to their reading groups, or just to their local RSL. It allowed people to establish a support network that they didn’t have before or strengthen an existing social network that they hadn’t really touched in too much on recently.
So people developed a much stronger relationship with their coworkers — because they were crocheting snowflakes together, or they were telling them, look, I have this disease. I haven’t really spoken about it much — but this is what myasthenia gravis is. And we’re doing this, you know, this, this art exhibition that’s happening. Would you like to crochet snowflakes with me?
And in the process of learning how to crochet, and in the process of all of that, they were talking about MG. People were learning more about them, and people were learning that there was this person in their community that probably hasn’t said anything but probably needs a little bit of help, and a little bit of check-in, and how you going? And I hadn’t heard from you in a bit.
Through all of it, I wouldn’t have been able to do it without the community. We are all human beings and we all have a life to live around our disease. And the community helped me so much when my whole purpose was to help the community. And you know that — that came back to me tenfold.
