A rider who has not eaten solid food for 18 months, whose joints dislocate every day and who also suffers from heart and blood pressure issues says she would rather risk a shorter life and do what she loves than give up being with her horses.
Ali Hirsz suffers from a rare form of genetic condition Ehlers Danlos syndrome (EDS), a connective tissue disorder.
Her joints “pop out a lot” and she suffers with very fragile skin, as well as the heart and blood pressure issues.
She also has two horses, former racehorse Socks and part-bred Welsh So And So, whom she says have kept her going through tough times since – and before – her diagnosis at the age of 18 last year.
In May 2018, she underwent surgery relating to the EDS and when she came round, she was unable to keep any food down.
At first it was thought this was a result of the general anaesthetic but in the September, she was taken to hospital in such a critically malnourished state, her liver was starting to shut down.
It was discovered that her digestive system was rejecting all food, so although at first she was fed through a nasal tube into her stomach, and then directly to her small intestines, neither worked.
“Throughout, I was still riding,” Ali told H&H.
“Sometimes, when the tube was into my stomach and Socks got bouncy, I’d be sick up the tube and have to go to hospital. Once, he grabbed the end of the tube, and I thought: ‘Oh my god, let go!”
Ali was jumping her horses in January this year, but in February, was taken back to hospital, again in a critically malnourished state.
“The tube wasn’t working,” she said. “I had to go into a special gastric ward till March, when they said: ‘Let’s try something else’. That was a very long six weeks.”
In a risky procedure, doctors inserted a pick line in Ali’s arm, which takes essential nutrients straight to her heart, bypassing her digestive system completely.
She has to have the line connected for 14 hours a day, and while there is a high risk of any infection also going straight to her heart, it is the only way to get the nutrients she needs.
“I used to work in a vet’s and preparing to put the tube in is like preparing for surgery there!” Ali said. “I prefer to do it overnight as I’m so active during the day, and I’ve learned to cope with it at night. People say it’s crazy but there wasn’t much choice.”
At one point, Ali’s tube had to be replaced and she was called into hospital – but Socks became ill.
“I said ‘Can you hang on for a bit?’” Ali said. “He had a tooth abscess; he had to have a tube in his sinus and I was draining it and flushing it, while they were getting ready to take his tooth out. I was getting calls from the doctor every day, asking if I could go in, and I’d be saying: ‘Hang on a minute, my horse is sick!’
“Then I did go, had the bigger tube in, they sent me home two weeks later and I’ve been here ever since.”
Ali has had to overcome even more challenges to be able to return to the saddle – she had to learn to ride one-handed, as any pulling on the arm with the line could make it bleed. But the tube is in her right arm, and doctors said riding just with her left hand put added pressure on her left shoulder, the muscle of which has snapped owing to the EDS and needs surgery.
“So I had to go back to riding with two hands, and teach the horses to be gentle,” Ali said, adding that while doctors had hoped that after a rest, her digestive system might be able to cope again, there has been no sign of this so far.
“It definitely gets me down,” she said. “Some days, I’ll sit in my room, bawling my eyes out.
“I dislocated my neck and doctors said I couldn’t ride any more as if I hit my spinal cord, I’d be paralysed from the neck down. It took me ages to think about it but the more I did, the more I thought I’d keep doing what I’m doing.
“If I had a really long life but not doing what I like, what would be the point? I’d rather have a shorter life doing what I love – and horses are what I love.”
Ali said that while she is in hospital, she feels like a number, that “the illness is you”, but at home, the horses are in a field minutes away from her parents’ home.
“I’m incredibly lucky to have that,” she said. “I’m very lucky to have my two horses and I’ve got a unique relationship with them. I think if I didn’t have them, I’d have nothing to get out of bed for.
“Sometimes, my joints are so bad, my shoulder’s playing up, sometimes I need walking aids, but even if I have to hobble down there, it’s worth it.”
Ali said the riding and activity has also helped keep her joints more stable – but she would continue even if this were not the case.
“With the eating, doctors have said if I catch an infection, that could be it – but I’d rather go that way than sit around waiting for something to happen. I wouldn’t be able to sit here and let my illness control my life,” she said.
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“I have to take my temperature every day and you never know when an infection might hit, which is scary, but it could be years; I could be 60 and still pottering about, it’s just one of those things, and I’d like to know I’m doing all I can.
“That’s why I’m trying to achieve milestones with the horses. My partner rides with me and both horses are in such a good place; it’s so good to know I’ve done that, despite everything.
“If something does happen, I know I’ve had a fulfilling life; that’s all anyone can ask for.”
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