This picture of popular spoken word performer Jackie Hagan, taken backstage recently at Morecambe’s Winter Gardens – with headliner Roger McGough in the background – tells an important, heartwarming story of determination and defiance. Jackie’s appearance at Morecambe poetry festival was her first on stage in three years, owing to a severely debilitating illness that has led to the amputation of both her legs.   

Immediately after the gig she said on Facebook that being heard by “a big bunch of people” had been wonderful. “Oh aye, sorted me out a good bit that did. Big venue, good audience, I couldn't have been more comfortable. Felt nourishing. Plus I'm not in pain up there cos I'm concentrating.”

Jackie has APS, a disorder of the immune system that causes an increased risk of blood clots, and systemic sclerosis, a rare, chronic disease that is four times more common among women than among men. After her first amputation, back in 2015 she went touring with her show Some People Have Too Many Legs.

Now she has told Write Out Loud what happened to her in the last few years. Her story resumes in early 2020, “the first day of lockdown”.

She said: “I collapsed outside Asda, totally unbearable screaming pain. I thought I’d been struck by lightning, I went to A&E, it was the first day of lockdown, so it was hard to get doctors. Got morphine, which is like tripping, so I went home, and life was chaos, kept falling backwards off the bed with exhaustion, bruised, so then getting doctors was harder. I didn’t have Covid.  I’ve got APS and systemic sclerosis …  but I’d never felt pain like this before, it was like seeing a new colour.

“I changed my own dressings, trying every type of pain relief. So this goes on for weeks, then it’s five months and I was living this crazy tiny life, hallucinating smells, wore the same T-shirt forever, then it was two and a half years. I absolutely lost communication, lost my mind, stuttered and twitched and failed to get heard by doctors. Then they amputated both legs.

“I briefly found my mind in hospital, started typing on Facebook, got loads of amazing letters and people just giving of themselves, felt really loved. Then I went home and had to face it and fell backwards off the bed and just let myself fall, the physical pain was muffled, but I’d figured out how it was my fault. Went much further away in my head. I couldn’t figure out how to climb out of the hole. Would throw 160% of my energy at the day and get a like, 3% yield.

“But I started talking to people, that’s when things started falling into place, I was now my own side, I’d celebrate every teeny tiny win, give myself the validation I was yearning to get from people, live in a place far deep in my head. I thought that was the best I could get.

“Then I did what I used to do and just say Yes and force myself into coping with the scary thing, and so I found myself in the dressing room, with Roger McGough bodding about behind me, wondering if people will get what I’m saying, or be totally distracted by wheelchairs and disease popping its head up in poems, and then the first laugh, my God, it was like the acceptance and connection I was drip-feeding myself with a teaspoon, like a big ocean of that, I wanted to hug everyone.

“Going from not getting through a sentence with saying desperate things to doctors, to this ease of expression, this connecting to shedloads of people at once. I felt like I suddenly had an outline. They heard me, and not cos they heard My Story or My Pain, it was that they’d heard a little joke about Take a Break or a closely observed sherbet lemon or a person holding a cat up so that it can see a parade - just human things that we all know, but we can forget for a long time.”

And Jackie’s changed outlook as a result of her stage appearance at Morecambe is reflected by her latest, postive posting on Facebook. It says she is “medically busy but creatively available”.

 

PHOTOGRAPHS: MILES HADFIELD (top) AND SARAH L DIXON