In part two of InDaily’s special report on electroconvulsive therapy, we tell the stories of Jenny and Alison.

Inside the tunnel

“I’d like my brain to be better,” says Jenny, seated at her desk, surrounded by the ornaments of a life she struggles to remember leading.

Photographs are painful.

A few months ago, Jenny found a pile of them, from trip she had taken around Australia during what were probably her mid-to-late twenties.

“Looked at the photos; didn’t strike a note,” she says.

“I have absolutely no recollection or any of them.”

“I’ve apparently been to Perth … I’ve been to Tasmania, I’ve been up north – I think.

“I threw them out because they actually make me more distressed, having the photos and knowing I didn’t remember it.”

At the age of 22, Jenny was working as a registered nurse.

“I absolutely loved my work; I wasn’t coping at home, but I’d get my work clothes on, go to work – no worries,” she says.

“Come home, it didn’t matter if I fell apart, provided I put myself together again enough to get to work.”

After a car accident – she was rushed to the emergency room.

“When I woke up my resilience wasn’t up to what it normally was,” she says.

“And so, normally if I would be stressed and I’d start going to verbalise, I’d think no, no, you can’t do that here.”

“But in this instance, I was talking to the demons and the doctors saw me.”

When medication failed to help Jenny in the months after the revelation, doctors recommended electroconvulsive therapy (ECT).

Over the next 15 years, Jenny had between one and three courses of ECT – with between eight and 10 sessions in each course.

READ MORE: Special report: “Shock” therapy in SA

Her case epitomises the profound difficulty mental health services can have in obtaining “consent” for therapies.

“I’ve never really felt I’ve been given an option,” Jenny says.

“They gave me a piece of paper and they said ‘sign there’, and I signed there.

“Because of my background with nursing, you were told doctors are gods.

“For a long time I believed that the doctor was god. If he said ‘this is what you need’, then I must need it.

“I would think: if I say I’m unhappy, they might get angry with me.

“I was very afraid of them getting angry with me.

“Because of that fear, I just went along with it.

“You just say I agree without reading it all, and then someone says ‘well, you agreed’, and you did.

“Fifteen years down the track I was still having ECT quite frequently, until one of my doctors finally painted a picture of what ECT was.

“(The doctor) asked me what I thought of the ECT, and I said I hated it.

“I was quite surprised when the doctor said: ‘we’ll stop it then’.”

Today, Jenny is on a massive regimen of daily medications, but she has not had ECT since.

At the age of 55, Jenny suffers multiple sclerosis, prolapsed vertebrae, arthritis, high blood pressure, sleeping disorders, schizophrenia and depression.

The latter is often exacerbated by her profound memory loss – a side-effect attributed to both ECT and antipsychotic medications.

“It’s like I’m going through a dark tunnel,” she says.

“You know that shadows are there, but you can’t see them, all you see is darkness.”

Jenny does not know if it was the years of ECT, or any of her medications which has done it, but her short and long-term memory is in hazy fragments.

“I could be really angry with it and say it destroyed by life, it destroyed my memories, it damaged my brain and that … but then, alternatively, they gave it to me because depression was part of the problem and (I had) suicidal ideation.

“Without (ECT) would I have even lived? Would I have acted on what was going in my head? I don’t know.

“I’ve got used to it now.”

“For a long time I used to get really quite angry and upset because I couldn’t remember things.

“I can sit around complaining all the time and cry and every thing but that wouldn’t solve the problem.

“Where would I be if I hadn’t have had it? Who knows.”

‘Worth it’

Since 2006, Alison has suffered several episodes of severe depression.

Over the prevailing years she tried several forms of antidepressant medication with little improvement.

“I held off as long as I could,” she says, “till the time came that I knew I had to do something, or else just stay really, really ill (and) completely miserable.”

Her psychiatrist had recommended she try ECT.

“Of course, when anyone mentions that word, you’re pretty apprehensive about it,” she recalls.

“(But) when you’re in a very severe state of depression, it affects everyone in the family.

“Every day getting out of bed is an absolute dread as to how am I going to get through this day.

“You’re virtually crawling on all fours to get through every day.

“I thought: you’ve got to do something for the sake of your family, and your own wellbeing.

“It wasn’t a complete shock to me to have it suggested, but still, when the time comes, you’ve got to swallow hard before you say yes.”

Alison acknowledges that the treatment has impaired her memory, but she says that side-effect has been merely an irritation during the treatment period and that she recovers most of her memory faculties once a course of ECT is complete.

The far more significant result of the treatment from Alison’s perspective has been that she is no longer in a state of total despair.

“I’ve had a fabulous response after struggling and struggling and struggling (with) medication … dragging myself through life to keep functioning,” she says.

“I’m in a fantastic place, and I put that down to the fact that I’ve had a pretty standard, full-on course of bi-lateral ECT.

“For me, it was the difference between recovery and absolute misery. I would trade a lot more than that if I have to.”

Alison’s husband Paul agrees.

“Alison was pretty bad – in deep depression; a depression, anxiety combination,” he says.

“We were at the end of the line.”

Paul says Alison’s memory problems during ECT have been only a “minor frustration”, and well-worth it.

“It’s not the long-term memory, it’s more occasional lack of recall on short term memory, like a conversation that might have been two days ago – that sort of thing,” he says.

“In a way, it’s a little bit of a blessing. Because the loss on a permanent basis is only the loss of the time of treatment.”

“She’s pretty well 100 per cent now, in my view.

“ECT was really a last resort, but (in future) it will be the first resort – because we know the side-effects are tolerable and the outcome can be brilliant.”

If you need support, LifeLine, Beyond Blue, SANE and Headspace are there to give it.

The Mental Illness Fellowship also offers support to families and carers.

Photograph: Michael Errey