Stanca Potra lives with a diagnosis of multiple sclerosis, and uses Rebif for treatment. In this blog, Stanca talks about being inspired to create new artwork from used Rebif syringes.
Rebif is a disease modifying treatment (DMT) for multiple sclerosis. Not everyone with MS will benefit from DMTs in the same way. If you would like more information about DMTs read our Choices leaflets or contact the MS-UK Helpline.
A couple of weeks ago I forgot my Rebif ( interferon beta-1a) shot for the first time since I started the immunomodulatory treatment for multiple sclerosis, three years ago. It felt a bit dramatic, as if I was about to have a relapse before I had time to go back home, take it again and get back on track. I got so used to my Rebif routine that it became addiction. I suddenly felt light-headed, accompanied only by my vertigo syndrome, I sometimes experience. Of course, I got home safely and the drama ended as soon as the liquid crawled under my skin. But then I realised how faithful I have been to Rebif all this time. For three years, not one missed shot. I took them no matter the circumstances: in public bathrooms, in the car, on a boat, at parties and on holidays. I stashed them in drawers, boxes and jars, left some in my purses, backpacks and even pockets. Everywhere I look, I seem to find a needle. I didn’t throw them out, I didn’t recycle them, I just kept them as some kind of evidence of what has been done.
So in honour of completing three years of three-times-a-week of self-injecting, I decided to do something with all those empty 468 Rebif syringes.
I filled them up with acrylic colours and made some kind of work of art over one of my own
It’s a painting of a dancing girl that swirls and spreads colour around her, the dress vibrating under rainbow shades. It’s the same way I feel about my life. So I realised that for every 44micro-units of tedious liquid, from each shot of Rebif that goes inside me, I can reflect 44micro-units of vibrant colour. After all, we all need to make the best of what we have:)
I started “stabbing” the canvas and as the syringes made their way through the material, it got harder and harder to find a good, unused spot, where a new Rebif could have its place. The same goes for my body. Rebif night gets longer just because I’m on the hunt for the new perfect spot where I can self-inject. And as you can see from the filed-up canvas, not all of them stand up pretty and perfect. Just like the ones that found their way through my skin, not all of them were perfectly inserted. Some teared up my flesh, some hit a muscle and some just pierced a nerve that still hurts today.
You can see them all right there, bent, straight or even fallen under their own weight. What you don’t see is what goes on behind the canvas. From aches and sores, to straight paranoid, you get your MS symptoms mixed up with side effects from the interferon treatment and even with symptoms so unrelated to anything you might think you’re loosing your mind. When something hurts, sores or tingles, I can’t really be sure if it’s MS related, Rebif related or I am just hypochondriac. So I just don’t think about it anymore, I shake it off and say it’s nothing. It probably is, anyway.
So if anybody wants to see what it looked before, this is the original painting:
I know that to most people around me, that’s what three years of Rebif looks like…Like nothing ever happened. But I felt the needle of each shot of Rebif, I felt the side-effects of each interferon unit, so to me, the painting looks like this:
Symptoms of multiple sclerosis are often unseen. Tiredness, pain, muscle weakness and spasms, difficulties in coordination, as well as sensory issues are not tangible to people around us. But that doesn’t mean they don’t exist. Multiple sclerosis has more then 468 shades of expressing itself, and three years can represent just a break between flares.
A painting full of syringes is only the beginning of a lifetime alongside multiple sclerosis, but my life has more colour than all side-effects interferon and MS have combined.
See more pictures of the creative process online today.