*
She’s had twenty-three years of living with chronic pain. I do not want to fall in love with this woman, knowing how the year will end for her. But I cannot help it. Our conversation roams over days, weeks, months; she visits me at my home for a long Sunday lunch about pain and motherhood and letting go and life; she can manage it because she is heavily dosed up with her opioids. Responsibly dosed up.
‘I got a viral infection in the nerves of my chest wall (in my late thirties). I was very sick. It left me with severe chronic nerve pain in a band around my chest. It turned on a gene I already had for a kind of generalised osteoarthritis. This ran in my family. It’s become more and more severe as time goes on. I’ve had operations on both hands. Two bones cut out of my hands. Four hip replacements, three major operations on my back, and innumerable injections to joints everywhere from a finger to my back, to the upper back, lower back, joints around my hip, and the muscles and tendons because I get tendonitis as well. I’ve got severe nerve pain down both legs, which has become worse after every operation. I’ve still got severe pain in the chest wall. I’ve got arthritis in what they call the facet joints down my back. I’ve had a cyst in my back that was pressing on my spinal cord. I’ve had tendonitis in my hips and pelvis and arm. Basically it’s just very widespread, severe, getting-worse pain. No way out. I’ve had nerves to the facet joints kind of burnt off with radio waves. I went through that last year. It didn’t make any difference.
‘Every time something else happens it’s another step towards disability. It’s never getting better. I’d be ending up in a wheelchair. I’m very close to permanent wheelchair territory. And once you get past a certain level of disability, you don’t want to be like that anymore.’
*
Like Elayn, Helena is a beautiful woman who takes pride in her appearance. ‘The vanity stuff kills you when you have chronic pain. The first thing I noticed was that I was never able to sleep on my side anymore, and that was twenty-three years ago. Then it was that I could no longer wear a bra. I’ve had to give all my beautiful clothes away. Can’t wear anything around my back. And no high heels. For a woman, every time you get to a new level of disability, you have to change your look. You can’t manage long hair because it hurts to lift your arms. Can’t manage fancy makeup because it’s difficult to put things on. All these little things bring you down an extra level.’ Elayn spent her final year being brought down, and then further down.
*
Helena is sexy and earthy. Quick to joy. She, like Elayn, looks like a woman who’d love laughing in bed. Yet there will be no partner by her side for this final journey. ‘When I split up with my youngest child’s dad twenty years ago I made a decision not to look for another relationship. My kids deserved all my attention, and I didn’t want them involved with any other father figure. They’d already had enough of that [she’s had three marriages]. So I concentrated on them until their teens. By then my pain was so severe that I realised I didn’t have enough energy to look for love. And I could no longer do evenings. All I can do is go to bed. So I haven’t been in a relationship – or even on a date – for twenty years.’
*
Pain has leaked its way into all corners of Helena’s life. ‘You have to choose where you’re going to work because some place, well, the chair isn’t comfortable enough. My definition of a good place to have coffee is absolutely somewhere with a comfy chair. The right chair at home is the only place where I don’t have to think about where I’m sitting. There’s also teeth. My pain is so severe that I clench them all the time. And all the opiates I take make them brittle, so they break with alarming regularity. I’m always off to the dentist; and in terms of vanity the front ones have been ground down so far they’ve required building up.’
*
Then there’s sleep, which also affected Mum. She was sleeping in my own childhood bed near the end, trying to get herself comfortable. Some days it was hard to get her up. She was sleeping a lot in the four days before her death. Helena explains that her own capacity to sleep has gone down dramatically: ‘I have to make sure the pillows are right so that all the various pains are balanced. I put a pain-relieving gel on my elbow. A knee supporter on my leg to make it warm and a hot water bottle next to it. There’s a pillow under each arm. I have to put patches on my chest walls. My back is itchy. I have a back scratcher in my bed. I might have to put steroid cream on my hands. And I can’t take sleeping pills every night because you get tolerant to them too fast. So I only take them on the two days I have to get up early to go to work. Then with sleep, because there’s always some level of pain, I wake up every sixty or ninety minutes or so. It’s so wearying. And there’s always the temptation to take more sleeping tablets or painkillers. It never works out well, especially with the sleeping tablets, because if you take them a few days in a row they stop working – and of course there’s always the guilt about asking your doctor for more.
‘Although your mum ended up doctor shopping, I’m sure she felt shame and guilt about it every time. I feel that too, each time I see my GP for regular medications, even though rationally I know my requests aren’t excessive. How much worse it must have been for her. And taking so many medications – I take more than twenty a day – it must have been so easy to get confused and forget how much she’d taken on any one day.’
With Helena, I’m piecing together a portrait of a chronic pain sufferer. How it takes over every part of a person’s life. Like weeds, that in the end are impossible to pull out.
*
Helena is disciplined with her pill regime. ‘There are two keys to managing chronic pain. First, managing it not on how you feel today, but on a reliable, thought-out basis. What you take is regular pain relief, not pain relief based on how you feel on a particular day. You’re not responding to the pain, you have to regulate it. The other key is that you must expect enormous variability. Since I came back from my holiday in Africa, well, it was such a great rest that my pain has been better. And I’m thinking oh, oh, maybe it’s going to be all right. But that’s what pain does. Sometimes it gets better for a while – but then it goes back to what it was. Over twenty-three years I’ve learnt that every so often I’m going to get a dip. And then I’m going to have to change my whole life based on that dip. The first dip was when I realised I wouldn’t be able to lift up toddlers anymore. The second dip was when I realised I’d never be able to work in Emergency anymore. And the trouble with being on opiates all the time is two things. One, you have to abide by all the rules. What dose you’re on and what you’re allowed to be on, and two, you’ve got to deal with the daily temptation to use more.’
I ask Helena if she’s more disciplined, as a doctor.
‘No. I guess I’m just fortunate to have avoided being an addictive personality. That’s pure luck. Most people who’ve been on opiates for twenty-three years would have developed an addiction. Specially people who like them. I find opiates wonderful drugs. Not only do they relieve pain, they give me energy. As you can see today, I’ve got plenty.’
She does. She’s enjoying her champagne, helping with food preparation at my kitchen counter, holding regal court at the dining table. Too alive for a too-soon death. ‘I’ve doubled up my OxyContin today. It’s the one that’s seen as an evil drug, that your mum took. It’s just a long-acting opiate. When I first went on it, I said to the pain specialist, I don’t understand this, these give me energy, they don’t sedate me. He said that’s what happens with patients who have chronic pain – it wakes them up. Usually they’re exhausted because they’re distracted by the pain. But suddenly, they’re not exhausted.’
Elayn. Immediately after her foot operation. Euphoric. And I had no idea what this new lightness would lead to. Assumed, naïvely, she was now on her way out of pain’s grip.
*
Helena’s body has developed a tolerance to the drugs, yet she’s physically dependent on her opiates. ‘Every single day I have to wrestle with temptation to take extr
a doses, because they’re so bloody good. They’re fantastic drugs if used appropriately. But they wear off after a while. Everything does. I’m on a higher dose than I was twenty-three years ago yet I’ve never become addicted. But it’s a daily thing. When I go to bed I think, ‘Shall I take an extra dose of oxycodone?’ As someone with chronic pain they’re fabulous. Not only do they make you feel good but they get rid of the pain. It would be so easy as a doctor to take too much. When I take a pill at bedtime, I think, is this being an addict? I think about that every single night.’
*
According to Helena, there’s a big difference between dependency and addiction:
‘Being dependent doesn’t matter – physical dependency is when your body knows it needs that extra opiate to continue to function. Addiction starts when it takes over your life. When you go out of your way to take extra tablets. When you start lying to your doctor about how much you’re having. When you doctor shop because you need that high even more than you need the pain relief.’
Helena tells me, bluntly, that Elayn was an addict.
*
I ask her if any of her four children – aged twenty-one to forty – have said to her along the way, don’t do it Mum, don’t kill yourself.
‘Oh, they’ve been too nice for that,’ she laughs.
‘They haven’t tried to talk you out of it?’
‘No. My first hip replacement was a disaster. I tried to sue the hospital but it didn’t work because I couldn’t get anyone else in the medical profession to support me in saying it was negligence. I ended up with devastating nerve pain down both legs. It was poorly treated, and that’s when I decided I was going to die when I was sixty-five.
‘I’m sixty-one now so I’ve had to give up earlier than I hoped. The kids have known what’s going on all the way along. An operation last year didn’t work. That’s what made me decide that this is it, I’m going to have fun with my kids this year.’ The shine of her roguish smile.
*
‘How will your children cope?’
‘That’s my biggest problem. I’m hurting them. Every day I think, am I being selfish? As opposed to how they’re going to feel better because they know what I’m going through. It’s really hard.’
*
The difference between Helena’s family and my own is that hers has communicated, and over a long period. The children have been with her, closely, every step of this difficult journey. ‘I don’t think they’re going to feel rejected. They’re going to miss me, dreadfully. They’re all very close, and we love each other a lot, and that’s the worst part. On the other hand they know this is going to get worse. They’ve seen it over twenty-three years. They understand why I’m doing it.’
My family were amateurs at this euthanasia business, floundering in the dark.
*
‘Yes, the kids would prefer to have me rather than my money. But I want to leave them what I didn’t have. My parents were poor – and I want them to be in a position that they’re never going to have to worry. If I sit around getting more crippled and less able to do anything I’m not going to leave them the legacy I want to leave them. Which is the capacity to do what they want, without having to worry financially.
‘There’s always amazing stuff [to be experienced, that Helena will miss out on by ending it all] but if you want to have an incredible year you’ve got to overdose on all your medication. I’ve been so careful for so many years. You can’t do that on an ongoing basis, but I think if I was going to have one year that’s a huge gift to the kids, then the way to do it is to take whatever medication it requires so they won’t be worried about me having fun. But it’s not something you can do every year, because you’re going to be stuck at the end of it having had more medication than is appropriate. I’m already on a higher dose of opiates than anyone’s supposed to have. And if I just kept on trying to have another good year, a) it would use up too much money, and b) I would end up on too much medication. Then I’d have problems with my GP, and my own management. So if I was doing this for more than a year I’d be doing nothing but getting myself into trouble.’
*
Helena’s children are going to Switzerland to be with her at the end, as is her best friend.
‘You have to be a member of Dignitas International, based in Zurich. The plan is to have a nice little trip first, then go. I can’t organise it more than three months beforehand because you have to have a medical examination, by your own doctor, which is three months or less before the deed. It will be saying, yes I know that this person is suffering from either terminal illness or unmanageable pain, and yes, this person is not depressed.’
You do not have to have a terminal illness to die through Dignitas. A lot of documentation is required. Not only passports, medical records, specialist medical records and driver’s licence, but statements from family members like children and grandchildren. Then family members who’ve travelled to Switzerland with the person who wants to die may be interviewed by Dignitas, and sometimes several times over. It’s a lengthy, thorough process of approval.
‘They won’t let you do it if you’re acutely depressed, because the whole point is to say that this is a decision you’re making in sound mind. If you’re severely depressed you’re not making a decision in sound mind. My doctor’s not keen on it, he’s very fond of me. But he knows I made this decision five years ago, and when the time comes up he’ll be writing a letter saying I’m of sound mind, and that this is a long-term thing – not a sudden impulse towards suicide. When you go over there you get examined by their doctors as well. You’ve got to have someone with you, you can’t do it all by yourself.’
A camera records the final moments in case police need to investigate. No doctor is present. A first drink is taken – an anti-vomiting drug. It needs half an hour to take effect, a time that can be deeply stressful. Dignitas staff then put a drink containing Nembutal on a table. That final drink is not handed by staff to the person who wishes to die; they must pick up the glass themselves. A doctor isn’t allowed to administer a lethal injection. It’s entirely up to the individual, and they’re asked right until the final moment if they want to change their mind.
‘You take one drink that stops you from being nauseated,’ Helena explains, ‘then you have the barbiturate drink – and just go to sleep. That’s all you do.’
Simple. Easy. Devastating. But less devastating to her family and friends than if she had decided to take her own life without warning, consolation or explanation. As Elayn did to us.
*
There is something deeply stable within Helena, she has an inner reserve of strength and discipline. I’m falling deeper in love with her seductive magnificence, and it is almost unbearable that shortly she will no longer be with us. Helena, who is so alive, yet so ready for a thoughtful death.
I ask her if some of her children are having long dark nights of the soul. ‘Probably. They won’t tell me. But they have seen how much worse I’ve gotten over the years, and they suffer when I suffer. All the time.’
And yet, and yet. Nothing is set in stone. My heart leaps.
‘Dignitas has had experience of people changing their minds. It’s not exactly a lock-in contract. And it’s expensive. The biggest problem for me is that you have to be cremated. It costs a lot of money to bring the body home. Maybe I should be buried in Switzerland. I don’t want my body’s energy and protein wasted. I’ve always wanted to push up roses. My youngest is going to sculpt a marble angel over my grave.’
She looks across at him, he smiles in assent. With pain in his eyes.
*
‘Do I believe in an afterlife? I don’t know. As a scientist I don’t believe in things unless the evidence is presented to me, although I remain open-minded. I’ve seen a lot of people die because I’ve been an emergency physician, and my impression is that people go somewhere. I always spoke to people in the re-sus room, and some of them hadn’t left yet. Some of them didn’t leave until thei
r families came in. I could tell. I wondered where they’d gone. The older I got, I thought the more openly I could talk about this with other staff, and found that a lot – particularly middle-aged women – who worked in emergency felt the same way. They felt they would know when someone left, and when someone hadn’t. And they would speak to them just like I do. But there’s a conspiracy of silence. Medical practitioners don’t want to talk about it because it seems so odd. So I suspect that people leave their . . . containers . . . and go somewhere. But I can’t pretend to know because I have no faith.’
*
There is no absolute decision. The world may change and Helena with it.
‘I want to make this year the best ever and so far it’s been fabulous. But if I don’t go through with Dignitas then I won’t be able to work anymore, because of the increasing pain, which will be very hard. For years my GP’s been saying to me, why are you still working? Because I love it. And I’m doing good. You get as much back from your patients as you give to them. It goes both ways.’
Oh yes, Helena’s doing good.
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