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When Lina Pane is swimming she glides weightlessly. She describes herself as a mermaid – her swimming pausing the searing pain that regularly afflicts her body.
“I am free. I feel no pain that one hour that I am in the water,” she says.
But when she is on dry land Pane speaks about her body very differently.
“I live with a terrorist. That’s the only way I can describe it. I just never know when it’s going to go off,” she says.
“If a [muscle] spasm happens then I could be down for a week or two weeks, and I’ll be wasting more muscle and it will take me longer to get back up … It’s like spiders and snakes just biting you so badly that you can’t move.”
Pane was born with arthrogryposis multiplex congenita (APC), a rare disorder that affects muscle and joint development. The most effective form of exercise – and relief from intense pain – is swimming in a wheelchair-accessible, heated pool.
But Melbourne’s months-long lockdown due to the coronavirus has forbidden Pane from accessing this escape. And with the state’s roadmap requiring 14 days of zero cases in metropolitan Melbourne before indoor pools can reopen, relief is likely still months away.
“I just thought the pool would be closed for a few weeks, but it just kept on dragging on. And then the pain was increasing, the spasms were increasing,” Pane recounts.
“I’ve gone from being a few hours in my bed to the majority of the day, because my spasms are so bad.”
Pane uses a wheelchair when she goes out, but prior to the pandemic she was able to walk fairly easily around her home. However, months without access to hydrotherapy has caused her to rapidly deteriorate.
“As each week goes past it’s getting worse … I’m worried I’m not going to be able to walk anymore,” she says, tears cracking her voice.
Pane used to use a scale of one to 10 to describe her pain levels, but now that no longer suffices. Each day is now closer to a 12.
“I’m petrified that I’m going to live in my bed.”
Outdoor pools opened on 27 September but Pane says this won’t work as the water’s frigid temperature could do more harm than good.
Victoria’s Department of Health and Human Services (DHHS) told Guardian Australia people could access private hydrotherapy pools for medical reasons, such as those in hospitals and rehabilitation centres, but Pane says this isn’t possible as the vast majority of these facilities are not allowing outpatients inside.
Her support coordinator, Nicky Thursfield, says she has been trying for weeks to get Pane and dozens of other disabled clients into a pool.
“I’ve been regularly on the phone to most of the pools, MSAC, GSAC, private pools. I’ve even tried getting clients into hospital pools but it’s just not happening. Even the hospitals are taking a very conservative approach, which I know they have to,” Thursfield says.
“But a lot of the pools in the hospitals are separate from the rest of the hospital. So why can’t we open them up to get people back into them on a monitored and step-by-step process?”
It’s a problem that should have an easy fix, Thursfield believes.
“It’s ridiculous … Break it down so you don’t have 20 people coming at once, but step it out as you would normally do any other medical appointment,” she says.
“I work with a lot of people that require hydro to be able to function. People that have had strokes … Parkinson’s.”
One of the only open outdoor hydrotherapy pools in Melbourne is at the luxury Peninsula Hot Springs, more than a three-hour round trip for Pane. That trip alone would take her days to recover from.
“I was thinking maybe I need to voluntarily admit myself into a hospital or rehab unit to get somebody to notice me,” she says.
Leah van Poppel, chief executive of Women with Disabilities Victoria, says while the state government had made efforts to accommodate people with disabilities, more needs to be done.
“There will be lots of people with physical disabilities who will be experiencing that and it seems it would make common sense for councils to be talking about opening up pools and other facilities to groups of people with disabilities in their local community,” Van Poppel says.
Despite calls for flexibility for disabled people, a spokeswoman for DHHS insists public indoor pools must remain closed due to Covid-19 concerns.
“We understand everyone is making huge sacrifices and the closure of indoor pools has been difficult, but this strategy to battle this highly infectious virus is working,” she says.
A strategy that is working for the collective, but not for Pane and those with similar conditions.
The department said their “aim is to do everything [they] can to keep Victorians safe, particularly those who are more vulnerable in our community such as those with a disability or complex health needs”.
But after multiple letters to MPs went unanswered, Pane says she doesn’t feel heard.
“It actually makes me feel really angry because it’s like I feel like I’m invisible, I’m not seen … I know it’s not just me, there are so many other people like me, that are getting worse,” she says.
“After the lockdown is over I will still be left with the aftermath of what it has done to me.”
Source: The Guardian
Keyword: ‘I’m worried I won’t be able to walk’: disabled Melburnians fear aftermath of long lockdown | Society