My Right to Die

"I speak in a very straightforward manner about the option to take my own life at a point when it feels done."

This morning I had a pivotal conversation with my GP of thirty-five plus years. She’s going to retire in a few months.

This particular doctor has been beside me since I fell into her practice a few months off the plane from Australia. I was completely lost, and she was right there at the beginning of being found. Her speciality within General Practice is being relational. You might think that is the baseline for working on the frontline as a GP, but we all know that is not the case. I have been so grateful, not to mention the envy of anyone I have spoken to about what has been co-created over all these miles, years, conversations – hours of conversation over decades.

She never watched the clock and she never looked away. Eye contact and open ears and heart. Her appointments would take the time a person needed. Period.

Back in the old days before Covid changed the world as we know it, when the norm was to go to the surgery and have face to face, her downstairs waiting room was always rammed. The other three doctors in their upstairs offices had much faster throughput, but on the ground-floor the biggest wait room would without fail breach out into the reception area. You had your appointment time, but could easily not get in the room for two or more hours later than the designated time. The wait space was indeed crammed, but full of goodwill. We all chose this doctor because she never ever sent you out until you were absolutely fully attended to. It was normal for an appointment to last an hour.

In an entirely appropriate manner I love her, and feel her sincere, also appropriate care for me. We got old together though I am a few years her senior. Of course she’s retiring, and rightly so. Her selfcare is inspirational – she gives a lot and always takes fulsome measured breaks at regular pacing.

We had a really ‘good talk’ in our monthly phone consult – we do three on the phone and then the fourth in the room. She puts me in at the end of her Tuesday baby clinic.

I was in fluency and flow during this conversation. Sometimes I’m not in that register when we speak and it’s always just what it is. She knows me – I know deep in my bones I am known.

After I put down the phone, I fell into two hours of grief. I wept until weeping was done. I am going to lose this human that has been a constancy over approaching four decades. Even though I am a few years older, she has been a real surrogate mother. She has held me, walked alongside me, built a relationship that is infused with trust, and gone above and beyond to help me as my curriculum of pain wended its way from the beginning, when it was not nothing, all the way through to the escalation over the last decade to being actually disabled, mostly housebound, and needing to use all my resources not to live in the victim position, not to make pain management the top note of getting through each day, not the only note.

Towards the end of last year I had an orthopaedic appointment with a very straightforward, no frills consultant. I liked him a lot. He said it as it was. He said my fusion surgery in 2020 was impeccable, but that it had created a rigid situation at the base of my spine. Our structural systems are dynamic, so this beautiful metal architecture had created a problem in that above it the spine was nodule by nodule unable to do what spines need to do. He also said that had he had anything to do with referring me for this fusion he would have strongly recommended against it. He said if you looked at all my scans historically, it was clear that the dilemma I now found myself in was almost inevitable.

He concluded by saying there was nothing further to do and he was discharging me from the orthopaedic clinic, and the rest of my life would be pain management.

I did have a big messy cry at this point, and he was no frills kind, just handing me some paper towels and giving me a few moments to be upset. I heard myself say something I hadn’t said before – that though the pain was unspeakable, what was sometimes worse was the relentless four hour circuits of pills, waiting for them to kick in, the slide in which the efficacy wore off, taking the next dose and same again, on repeat, twenty-four hours a day, every day.

I described it as hardcore car crashes because that is what it felt like.

He said: lady, it doesn’t need to be like that. He told me I needed slow release patches that were changed every fourth day. Two patches a week, no more car crashes.

Dear reader, it was life changing.

However, the thing he also said that I didn’t really hear, was that the pain would continue to escalate over time. I was too excited to really register that bit until it started happening.

It is eight months later and I am now on the strongest patch my doctor can prescribe, plus oral medication four times each day and another dose in the middle of every night.

Everything crashed into everything after my doctor call yesterday – grief, terror at having to meet a new doctor who is pretty much guaranteed to take a look at my prescription and react. I cannot tell you how much I am not up for a conversation with a brand new doctor. I will not only be furious with her/him/them for not being the doctor I love and trust, but I know I will be grilled on discussing and reviewing the hefty prescription, put in place with great care, through all the many measured and unflinching conversations over time, built into mutual trust and respect.

Then it brings me to the very simple conversation I am currently having with myself, my therapist, my group – therapy and group are also enduring. Seventeen years alongside Joanna, not remotely orthodox therapist shaped – the perfect shape for me, and my group, also that many years.

I speak in a very straightforward manner about the option to take my own life at a point when it feels done. I have always talked about death. I’m good at talking about death. It seems clear that as a society we need to rewrite death from the narrative of tragedy and taboo, into something we can get up closer to and make more intimate, ordinary in the best kind of ordinary. That is my wide aperture view, but this is me talking about my death.

I have always been clear and open with my doctor that I am unequivocal about taking matters into my own hands if and when I’m done. She has been so willing to hear me, I mean really hear me. She doesn’t like it, but she doesn’t argue. She also knows I have made it my business to educate myself about everything that matters: legal implications for anyone afterwards, and how to procure the pentobarbital – the unequivocal death drug. The one they use in USA death row executions, and the one they use at Dignitas in Switzerland.

Then there is the reality of my pain prognosis. It will keep getting worse, and the only possibility is pain management. There is not much of a margin anymore for increasing medication to higher dosage. I am standing in the threshold, the doorway, the truth of this.

Here is more truth: the epic amount of medication I am already taking is no longer getting on top of pain – it takes the edge off at best, and it I do the smallest of physical business such as hosing the garden, it triggers escalation that then requires I stop, lay down in my optimal arrangement of support pillows etc, for recalibration.

I am looking down the barrel of the last bit.
I can report from the inside of what getting worse happening is in a metric sense, and I believe I stand inside three more years maximum. That would include a decision that gave a six month lead up, so more like thirty months.

Here is what I’d like to be understood in.

Imagine you are surgically attached to an audio speaker playing Black Sabbath at an off the scale volume, and that it never, ever stopped. Now convert that into embodied pain.

It does not let up.
The long ago locus of my pain was lower spine, my lower two discs had more or less collapsed by the time I had the metal architecture put in six years back. There was a brief respite in a decrease of volume, and then what my no frills surgeon told me was clear to see if anyone had taken the time to look historically, kicked in.

Now, I have to report that every single location of my body is screaming. All that clenching, compensating, walking in ways that created further problems in different body parts… then about five years ago I started developing a different tonality of pain as an overlay. It lives in the slippery realms of autoimmune conditions such as fibromyalgia. The diagnosis and treatment are flailing about, and it still carries an echo of judgement in the way that conditions like ME and chronic fatigue still roll some people’s eyes as if it’s not entirely a real thing.

It is a real thing.
Neuropathic pain is a whole different orchestra of brutal pain. It is different from the structural pain and I am living with both. I can’t take any of the go to meds for that because it won’t agree with the pain regime I’m already on.

This is less a tragic song, and more akin to a forensic report.
This is the first time I can see the specific time line, rather than an approximation.

That is not nothing.
I’m catching my breath.
I’m writing it because that’s what I do. I do it for me, but also in case it means anything to you. In case you are living something like this and might feel less alone. In case you love someone living this and maybe it could support you to do your utmost to hear, to listen, not only the natural reflex of resistance.

Last Friday was the Friday that once a month is Groupie Day. I have been in this group since it was born around eighteen years ago. It is a slow opening group which means you step in with an agreement to stay for (I think) two years, and as and if and when you feel you’re done there is notice given and justice done to leaving and being left. People have come and gone over the duration, but it is a group with a depth culture of staying. There are eight of us and Tim, our Person. This group is a foundational part of my internal home address. I’ve been called out on pretty much all my hiding places over time. It’s what we do for each-other and with each-other. I have been able to allow so very many stories that felt like the truth of me, well, just fall away. Without knowing, or planning, I fell into nonbinary geography with my groupies, and now I literally cannot muster up a drama or a tragedy. I have a lot of feelings. I mean we are all full of feelings – the thing about the group is that my feelings are witnessed and loved. As a fairly solitary human, in that I live with myself, my cat and my dog, and because my human constellation is quality over frequency, sometimes feelings happening come with a beat of lonely.

In my group, the place I’ve fallen to pieces so many times and found on the other side of falling, that the pieces are slightly reshaped - in that group feelings are never lonely.

Last Friday I unravelled around this thread – pain, pain medication, escalation, the impossibility of actually continuously increasing the prescription because the drugs will ultimately stop breathing happening. There’s a ceiling, which is kind of comedic…

What happened in my group is really beyond description, but it gave me what I can’t measure. I can’t tell you what it meant to me, but I can and need to tell you what it looked like.

If I don’t it would be so easy to imagine that I was showered with love and a version of not empathy, more like, it’s so terrible and we want to make it not this – the human tripwire that happens in the face of being helpless to fix a thing that is kind of unbearable, but also in my baseline, and in my precious group, just what is.

If we can stay in the what is, and not make it a tragedy, something priceless can happen. The shared staying with is the thing where contact happens – the medicine for lonely. I’ve had a lot of deep lessons in the difference, especially over the last decade, and when people are highjacked by the very real discomfort of helpless, distance and separation are the rollout.

I’m still feeling the contact from last Friday with my group buddies, it continues reverberating inside the human I am.

It is worth mentioning too, that me unravelling and being stayed with, was not only about me – I brought death, dying, pain, agency, choice, fear, all of that and more, into the circle and then it belonged to everyone. Everything always does.

In conclusion to this writing, that I was writing anyway, inside where writing cooks, but suddenly got written fast because hearing yesterday that I’m going to lose my beloved GP, threw it onto the page at sonic speed, well I want to say a few unadorned things about curating taking my own little life in the not too distant future.

I have been talking in public by writing, by being part of various communities, for a very long time about my death revision. I speak from an intimate place, but not without a sense that even in a modest way I want to contribute to the bigger conversations.

This is a threshold and I can feel in my body, but most deeply in the place below all thoughts, maybe even below feelings – the place where I just move like water does in a river, or between the shoreline and the sea. I can feel it there in a new way.

Of course it is a decision and an action that happens above ground, and I have given this a lot of thought.

The things that matter to me are that it happens with attention and care. No-one will get a shock, except there is always a kind of shock when someone is gone, even if you know it’s happening. I mean that no-one will hear it out of left field. It matters that I make a point of telling people I love what I love about them, that I build in that space for conversations.

It matters that I do it right.
I have learned what I need to know to do it right.

In a different world I’d create a gathering and make a ritual with a little cradle of humans to stay with me until the time to let me go – unfortunately this is fraught with legal pitfalls, so I will make a ritual near my leaving date, while remaining ambiguous about fine detail.

I will leave video evidence of my right mind decision, and any legal documents that support there being no aftermath with criminal justice.

I will, unless policy changes in the next couple of years, be taking this leap alone – I will not feel alone.

I will, as my nature is quiet order as an aesthetic, not be leaving a mess.

I will have something in place so I can be quietly found the following day.

As for the afterparty – well there will have been a bit collaboration in advance about that.