‘My home is my prison’ – one woman’s struggle for a normal life

Trapped in a vicious cycle of adversity, Marlborough local Linda Barnes needs to lose almost 25 kilograms to have a shot at a normal life.

It all started 17 years ago when Linda was reaching to pick her son up, who was less than a year old at the time.

“I picked him up out of his cot to change his nappy, as I picked him up I heard a snap – like a twig.”

The accident was devastating, and confined Linda to a wheelchair. She was paralysed from the waist down and diagnosed with Caudia Equina Syndrome (CES), a condition which affects the bladder, meaning she has a cathedra and colostomy, rendering her incontinent.  

She has been unable to walk ever since.

To make matters worse, Linda did not qualify for ACC funding.

But she didn’t let this dampen her spirits and took to riding a hand cycle to keep her weight down.

Her husband bought her the bike and, for three years, she enjoyed the laidback and fun style of exercising.

But Linda has a history of hernias and has had six surgeries to repair the damage they’ve caused. As such, she says she is constantly exposed to the risk of another hernia and has been told she is no longer able to safely get on the hand cycle, as the risk of injury is too high.

On top of this, the added stress of weight gain means she is in need of surgery to repair a leaking hole in the wall of her bladder.

This is where the problems lies for Linda. Because of a condition which means she has difficulty processing food, combined with the fact that it’s now too dangerous for her to transfer herself onto the bike, she is too heavy to undertake the required surgery to repair her bladder.

“They want me to get down to 100 kilograms, following that they will have to do a second surgery and for that second surgery I need to be 85 kilograms.”

Linda is currently 123 kilograms.

It’s a big task – but without the hand cycle, and with the gym and swimming pools out of the question, her weight loss target looks to be near impossible.

Without the weight loss, she can’t have the surgeries and without the surgeries, Linda will remain incontinent.

‘I can’t get a job because I smell’
Linda’s condition means her bladder does not drain properly and she’s constantly leaking urine.

This is a constant source of distress for Linda. It puts a strain on both her social and professional lives. She can’t get a job, as she says employers tend to smell the urine and that puts them off.

Although things are tough, Linda still manages to get out and maintain some aspects of a normal life. She has just been elected president of her local toastmasters club and has been an active member for years.

But it can be tough.

“Some meetings I can’t turn up because I have had an accident or I’m in the hospital.

“But I’m trying to do my best for the club; when I do turn up, I wear tones of perfume to try to mask the smell and I try to sit away from people so they’re not affected by the smell of urine.”

Linda is a regular at the local hospital – so much so, that she describes herself as a “frequent flyer.” She says she is there just about every second day, either getting her catheter changed or having some sort of treatment to help her urinate properly.

She says she is putting a lot of pressure on the healthcare system, as the hospital is having to fork out hundreds of dollars for adult nappies – for which she used to pay up to $300 a week.

Linda’s shot at a normal life
But there is hope, and it comes in the form of a harness.

To lose weight, Linda must exercise and for her to exercise she needs to get back on her bike.

The harness will allow her to safely transfer herself into the bike, giving her the chance to overcome this massive weight obstacle.

Linda is confident that, once she is able to get back on her hand bike, she can lose the weight and have the surgeries.

But, she faces one last hurdle – the expenses.

The harness itself, the installation, the shipping and the GST will end up setting Linda back $22,850 – an unsurmountable figure for someone on an invalid benefit.

But Linda is still not giving up.

Linda has set up a givealittle page to raise money for the harness and has so far raised $750. But she’s still a long way off.

She is looking for assistance from generous Kiwis to help give her “the freedom to reach my goals.”