The Power of Love

Words by Irena Brooks and Lisa Tamati

When extreme ultra-runner, Lisa Tamati, was plodding hundreds of kilometres through deserts, she had no idea she was actually preparing herself for the toughest endurance event of her life.

In February 2016, her mother Isobel suffered a massive brain aneurysm and stroke.

Hampered by an 18 hour delay in her diagnosis, it looked likely that Isobel Tamati was going to die.

But no-one counted on the resilience of both mother and daughter.

Not only did Isobel survive, but she has re-learned how to walk and talk, has passed her driver’s licence and this summer, she is continuing with swimming lessons.

Lisa Tamati has written a book about her mother’s recovery called “Relentless”.

It was what an Aunty called Lisa during a particularly difficult part of Isobel’s rehabilitation.

But reading the book you can see the word applies equally well to both women — they are strong, determined, and both bring a never-say-die attitude to a seemingly hopeless situation.

‘Mum’s collapsed and she’s in terrible pain. Get over here now!’

I’ll remember these words forever etched into my memory. It was the end of life as we knew it and the start of a very different one.

So starts the book, as readers are taken on the journey of Isobel’s brain aneurysm and stroke, resulting in massive brain damage. The Tamati family was advised that Isobel would need institutional care for the rest of her life.

Lisa doesn’t pull any punches in the book, and looks back in horror at the eighteen hours her mother endured excruciating pain as her head filled up with blood.

The skull cavity is a fixed size so when blood leaks out of blood vessels it fills an already full space. It squeezes and puts pressure on the brain and causes unimaginable pain and brain damage.

Isobel Tamati remembers nothing of the day her life changed.

In fact she can’t even remember events in the days preceding her aneurysm and stroke.

Lisa fills in the blanks for her.

“Mum had been to her GP twice in the week leading up to her aneurysm, with a headache behind her left eye.” 

“I’d spent years suffering with migraines prior to that but hadn’t had any for about 15 years at that stage,” Isobel says.

Her GP was new to her at the time, and neither she nor Lisa apportion any blame to him for what happened next. If anything, Lisa kicks herself for not going with her mum to see the doctor. His advice to Isobel was that it was likely a stiff neck and she should get a massage.

When Isobel collapsed she was taken to Taranaki Base Hospital by ambulance but the aneurysm wasn’t diagnosed for hours. Doctors thought it was a migraine and it was only intervention from a friend who worked in the hospital that saw Isobel get the CT scan that revealed what was happening to her brain.

Isobel was eventually transferred to Wellington arriving at 1am the next day, where she was taken straight to surgery. She had a stroke on the operating table, which paralysed the right-hand side of her body.

The book covers astute observations about New Zealand’s health service, the family’s fight to care for Isobel at home rather than place her in an aged care facility as advised, as well as lighter moments.

“When we had her at home just two or three months … my brother and I… had her on a big walking frame, and one would push and the other would be behind her holding her up in case she stumbled. We thought we would try her without the walker for just a step or two to her bed. She was like a rag doll trying to take a step. Finally she made it over to the bed and collapsed, exhausted. She turned to us and said, ‘Well, my equilibrium seems to be a little off’.

Now at this point she hadn’t uttered more than a single word or two.

Dawson and I looked at each other with our mouths open, ecstatic, because we knew with certainty she was in there somewhere.

After six months of home care, Isobel still spent most of her time in bed, unable to sit up unaided.

Bed sores, neck problems, continence issues, constipation, and drop foot were other issues the family had to deal with in addition to trying to maintain muscle strength, stretching her limbs to counteract spasticity, and teaching her to speak and sit straight.

The costs emotionally, financially and physically weighed on everybody.

Isobel can’t remember any of this time.

“There’s a gap of about 10 months,” says Lisa.

But a couple of moments in her recovery stick out for her — one good and one bad.

Lisa’s wedding (10th Dec 2016), which Lisa and partner Haisley postponed until Isobel was well enough to enjoy it; and going to the hospital and doing physio — an experience Lisa writes about in her book.

I managed to get Mum back into the hospital-based physiotherapy programme.We were excited about the prospect of having professional physiotherapists work through some exercises with. In addition there was excitement about the thought of all the equipment they had that we didn’t have at home.

It was about eight months after the aneurysm and by that stage we were getting into the walker training with Mum. I remember sitting back watching how the physiotherapists interacted with Mum, wondering what new techniques they would use that I could replicate at home.

I watched as the team of physiotherapists moved Mum through a series of warm-ups before taking a break. They stopped to fill out some paperwork, nodded their heads and ticked some boxes, before working through another series of warm-ups.

I slowly realised they weren’t warm-ups I was watching, but the actual exercises. I felt like it was a baby-sitting service, especially when compared to what we’d been doing at home. It was a complete waste of time.

There was one exercise though that Lisa and her Mum found valuable — the parallel bars were great for helping her to learn how to walk again, so they continued attending the six week programme.

At the end of the six weeks there was an assessment session. All the way through they ticked boxes and talked at Mum as if she was an idiot. 

They conducted testing on her cognitive abilities as well as her physical abilities. Afterwards, we were called into a meeting with the doctors, physiotherapists and specialists to discuss whether we should continue with Mum’s sessions.

The head doctor blurted out, in front of my mother, ‘She is far below the level of a severe dementia patient and there’s not much to work with and because of that we have decided to kick her out of the programme. There is nothing much we can do with her.’

I turned and looked at Mum, ‘And how does that make you feel Mum?’

She took a deep breath and released it slowly before saying, ‘Well I was feeling quite empowered before I came in here. I thought I was making great progress but now I’m feeling very depressed. I don’t know what to think and it makes me not want to carry on.’

I looked back to the team in time to see their eyes widen in shock. They’d graded her with little to no comprehension and unable to communicate. They’d spoken over her, and if I was being really honest, I’d say they treated her like she was an imbecile.

Despite her reply showing an obvious level of intelligence and eloquence, they didn’t change their judgement.

“They would talk down to you as if you were an idiot, or worse, as if you weren’t even there,” Isobel says of the experience. “I felt really embarrassed, and not heard. They weren’t talking directly to me, but over me … it must be how kids feel sometimes, you know,”

“Because they talked down to her she felt like a naughty little school girl who was in trouble in the class,” says Lisa. “She was still struggling with her brain and then she had this intimidating testing done on her, so she was getting the answers to their tests muddled.”

“I felt like a failure,” Isobel remembers, “like I’d failed a test at school. I went back to feeling like a kid.”

The experience compounded early feelings of failure from having dyslexia as a child.

“The irony was that mum spent her whole adult life empowering people with dyslexia and learning disabilities, as a teacher,” says Lisa.

The one good thing from that experience was that they learned they needed to get access to parallel bars. Amazingly, a lovely lady gifted them a set and these were a vital tool in getting Isobel to walk again.

“It was pretty amazing when I started walking,” Isobel says.

It dawned on her then “that I can come back, and I will come back.”

“Once she was walking, I saw bigger improvements in her condition,” remembers Lisa. Up until that point progress had been “glacially slow”.

“And it’s still like that … progress will inch along and then suddenly she’ll have a breakthrough. We’re still having those moments.”

Isobel recounts learning to swim again.

“I’ve always been a strong swimmer and competitive swimmer and I thought nothing of going back to the pool … I thought I was fine. I got in the water and I couldn’t float. I sunk. That was really demoralising — I was no longer a swimmer.”

She also developed a real fear of the water and it took some coaxing to get her back in the pool.

“Lisa took me in hand and gave me little progress lessons at the pool, and it took a long time.

Previously I would have been very embarrassed about doing what I did, but it didn’t matter. I needed to get it back.”

“I couldn’t leave her for a second or she would tip over and drown,” Lisa recalls. “She’d lost the innate ability to know how to move herself in water.”

They started with walking in the water and then one day Lisa had a belt around her mum and a noodle under her arm and all of a sudden, it just clicked.

“She suddenly worked out how to manipulate her body in the water. She could dog paddle across the width of the pool a few times and suddenly she could see she that one day she could return to aquarobics again.”

“I went there for 15 years three times a week and LOVED it,” says Isobel.

Of course COVID put a stop to the swimming progress but Isobel is looking forward to continuing relearning how to swim this summer and hopefully being able to independently return to aquarobics.

“It made me realise how scary it must be for kids learning to swim,” says Isobel.

One of the best moments in Isobel’s recovery was when she passed her Drivers Licence.

“I wouldn’t have got that without Lisa.

“It’s awesome, I’ve got my freedom back. I can hop in the car on my own and go and do something. Before, I was dependent at all times on somebody else. It’s really nice to have that freedom again.”

She failed on the first attempt, but went back a couple of weeks later and passed.

“She only failed the first time because she didn’t indicate when she was leaving a roundabout,” Lisa reveals, “but who the hell does that? I didn’t even know that part of the Road Code!”

Lisa started Isobel’s driving lessons pretty early in her recovery. 

Nobody thought it was a good idea.

“Even my sons went ‘Oh mum, you can’t drive a car — you can’t drive your wheelchair!’ 

“Yeah we had holes in the walls of the house where she’d hit with her wheelchair,” Lisa smiles.

“We went down to the port to that big car park, in the evenings when there was nobody around, and I plonked her in the driver’s seat,” Lisa recounts.  She said ‘You’ve got to be kidding.’ But we crawled around that car park with my heart in my mouth and I saw a grin so big that I thought ‘I’ve got to get her that.

“She had no control over anything else in her world. She couldn’t dress herself, go to the toilet by herself or shower herself and here she was driving! Very slowly but it was a start.”

First, Isobel had to go and see the doctor to check that she was physically capable — do eye tests and reaction tests.

“The doctor hadn’t seen me since the very early days of the stroke and aneurysm so he was totally blown away,” Isobel grins.”He had tears rolling down his face, which you don’t see very often on your GP, and kept saying ‘I can’t believe it! I can’t believe it!’

“He was expecting her to still be in a wheelchair and here’s mum, standing up to greet him and walking into his office. And then she’s like ‘Yes, and I’m here to get my licence,’” Lisa laughs.

Lisa keeps her mum on a strict diet of mostly vegetables with a bit of fruit and very little meat or fish.

“That’s not for everybody, but because of genetic factors, she’s better on a low to no-meat diet. I also have her on Omega 3s and Vitamin C and Arterisol to help strengthen the walls of her blood vessels,” says Lisa who took her mum for gene testing.

“It’s just understanding what your genetic risk factors are and then taking action to help prevent those risks from happening.” Isobel’s father died of a brain aneurysm at the age of 53.

Hyperbaric Oxygen Therapy is another vital piece of Isobel’s rehabilitation.

“I drive my family mad with my research because I get so excited about it,” Lisa admits.

“But if she wasn’t like that, then I wouldn’t be here,” Isobel reflects.

She is now 79 years of age.

In July of this year, her husband Cyril Tamati died at the age of 81.

It was another blow for the tight-knit family.

These days Isobel lives with her son Dawson and sees Lisa most days for some type of training or rehab.

“It’s so important to have people around you who care,” says Isobel. Through all the stages of her recovery, “Lisa kept me informed the whole time so she verbalised everything as she cared for me. That was huge, because at least I knew what I was up against. I felt safe and I felt cared for the whole time.”

RELENTLESS by Lisa Tamati. 

Available from Poppies Book Store and all good book shops. Or order from lisatamati.com

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