Shea Tagilala was diagnosed with MS at 23 years of age. It happened quite suddenly, first noticed when the simple act of holding a coffee cup became problematic. In a very short period of time she went from a fit and active person to someone with complete paralysis to her right side including half a lung, bowel, bladder and tongue. Swallowing suddenly became a major issue. Several doctors told her she would never walk again.
I was completely paralysed; split down the middle. Half my lung, half my bowel, half my bladder. My eye was all over the place, I had to wear an eye patch. My tongue would pull to the left as I only had muscles on one side. I couldn’t roll over in bed. I couldn’t sit up by myself. I had endless symptoms but was in denial about MS. I don’t have MS; this is completely nonsense!
As an attractive and talented person, not only did she have the aforementioned physical and emotional issues to contend with, she lost her hair and teeth due to the massive amounts of steroids she had been prescribed. Losing her looks was particularly galling and at that time she wouldn’t let her photo be taken.
Being told she may not survive; that she wouldn’t walk again and suffering sometimes from incredible pain where “my blood was like lava down my legs”, lit something inside Shea. From six months at rock bottom, not caring, being angry and usually in denial, she slowly regained movement through sheer determination.
My hair fell out, my head was the size of a basketball, my skin was raw with a skinny little body. I can’t believe how terrible I looked. I’d always been capable and able and then suddenly your skin’s terrible; no one even notices you, it’s like you’re not even there. It made me realise that… life’s easier if you’re pretty. People are nicer to you. It made me wake up. It got me out of the dream world. It’s the real world, wake up!
Shea is now 39, has had five children, and it has been a long journey. It took her five years to learn how to walk again, a path that started with weightlifting using a can of beans and very basic stretches using the sofa
“I would lean over the couch and pull myself up. I was not going to spend my life in a wheelchair. I just had to learn to walk again”. She can now run: “. I’m a bit unco, I’m a fighter. I always knew I was strong. I knew I should have died”.
Today Shea finds herself in a better space, in part because she knows what to expect.
“I do get frustrated and annoyed with myself. Something as basic as opening a door handle can be a problem. Frustration for me is the biggest hurdle. It annoys me when things don’t work; like a cup with a crack in it – throw it out. I don’t work!
Creative before MS, Shea has taught herself to paint again with her left (non-dominant) hand.
“Before I got MS, I used to love dancing, singing, acting, painting and drawing. I was very artistic in a lot of areas. And I couldn’t do any of them anymore. So, everything that I loved, that I was about, was just gone. What I wanted to do was, through my art, was show people that even though you have MS, and it is a horrible disease, it doesn’t have to be the end of the world, you can always work with what you’ve got. I had to make a whole lot of new hobbies because everything that I had, I couldn’t do. Although something sounds horrible and awful, you can still get the positives out of it”
Shea has charted her artistic journey on Instagram (@sheatagilala) since relearning to paint. She has something to offer, and she is driven to share it.
“This account is a visual journal of my adventure with art. I have always loved painting and have recently become inspired to pick up the brush again. I figured if I could teach myself to walk again, surely I can teach myself to paint left handed! Every time I decide to paint I have no idea what my body will be capable of and what the outcome will be. Each creation is a total leap into the unknown, a celebration of gratitude for life and all its possibilities. I can see and feel already over the last months that I’m progressing. Wonderful people are buying my art and it is something that I feel so excited about.”
More recently Shea has been receiving commissions for her artwork, including from Barfoot and Thompson, which has helped give her the extra courage and impetus to keep moving forward.
Shea graciously shared her story at our 2023 annual fundraiser and gifted one of her artworks which was auctioned at the event.
Thank you Shea for sharing your story – you are an inspiration.
Shane found a reason to run Auckland's Round the Bays event after his partner Katie was diagnosed with MS
