You might think today’s blog is about death and drugs, or perhaps, in our usual genre relating to fear and the fragility of life, but you’d be wrong. It’s about hope.
We are acutely aware of what a privilege it is to be allowed to work in the profoundly sacred space of palliative care. Spending time with those precious people balancing on the edge of life and death, is almost like getting a special passport to visit a territory for which you would usually not even be allowed a visa.
As a sign of respect for this land we get to visit, we owe our tour guides our utmost respect and honesty. The conversations taking place in these rooms are beautiful, brutal and brave. On the brink of life there is no more reason to speak in riddles, platitudes or euphemisms.
Some conversations are easy, in fact, they are often hilarious. Many chats are practical and we find ways to pragmatically plan and plot the next chapter. We speak about gratitude, forgiveness, regret and love.
There is one conversation I do always dread though: when a patient tells me they are scared of dying. Of course, we can assure them that with us we promise that they will have dignity and they will be comfortable, but often, that is not the their real fear. They want to know what dying feels like. They want the assurance that when they attempt this next journey (very much alone) it will be okay. We all know the human body knows how to die, just as well as it knows to live after birth, but you and I both understand that this admission of fear is much more existential than that.
If you are a regular reader of this blog, you might know that my husband lost his hearing overnight during a traumatic illness. For years we’ve been trying to find a solution or hope that some of the hearing could be restored. There is nothing wrong with his ears themselves, but as his nerves were damaged, conventional solutions from audiologists make very little difference.
And so, in our quest to restore his hearing, he received three medically supervised ketamine infusions over 6 weeks. His hearing was not restored (sorry, refer to paragraph one, this is not the hope I spoke about), but we noticed some other changes. His sleep improved exponentially. His aching joints suddenly stopped aching, and, in ways one cannot scientifically measure, his disposition changed. I described it to his physician saying “suddenly the edge was gone.” He was less frustrated, more patient and calmer. (He still ignores me and blames his deafness though ).
His doctor, Richard Brink, is one of the few doctors who still has the ability to treat us humanoids as whole beings and not just see a set of different systems, tissues and organs. During our visits we would sometimes touch on the maladies I have… ADHD and PTSD (to mention a few abbreviations), a handful of auto-immune diseases and anxiety. (Anxiety does not just run in our family, it sprints like Usain Bolt).
Richard showed a deep interest in our work around palliative and end-of-life care and how it has affected me. One day he looked at me and said, “Let me gift you with a few sessions of ketamine. Let’s see if it can help you in some way. Let me help you carry this load of what you do every day.” I was touched by his generosity, kindness and empathy.
I was also terrified.
What if I have a bad trip? What if something goes wrong? What if I get addicted? What if I end up dead in a pool like Matthew Perry? (Jumping to conclusions is also a sport in which my family excels).
My first two sessions were beautiful. I was totally aware the whole time. There was no fear, just colours and music. My thoughts remained my own but they flowed freer and without any sense of urgency or stress. I felt like I was me, but without the cloak we have to wear to fit into society. I was aware of Dr Brink holding my hand, checking monitors and adjusting nausea meds etc. I laughed and even sang a little Christmas song once or twice. It certainly did not feel like I was “tripping” on drugs and in the weeks that followed I was slightly calmer, but there was no huge difference.
And then……
I had my third session.
This time Richard did not put music on. He did not dim the lights and he did not put the comfy black sleep mask on. We just talked. We chatted about everything, from Trump to Tolstoy, greed to grounding, waves to wallowing. We spoke about time not being linear and the Vietnam war. I remember our conversations but was removed from time. I was not sure whether I was there for 40 seconds or 40 years. Articles on ketamine say you lose your ego or sense of self, but I felt very much myself, just not packaged for this world. (Now that I type this, it sounds so dreadfully corny. I apologise, but language is failing me a bit here). The only way I can describe the feeling was that after years of the FAST FORWARD button being pushed on my life, someone pressed PLAY, and suddenly life was in focus.
Five days later, I am still able to bring myself back to that focus, to silence the chronic low-grade agitation, the unrelenting shame of not-being-enough…….and a gnawing guilt of being too much.
Dr Brink wondered how I thought ketamine could serve the people we work with. I am not clinically trained and my thoughts are, as always, purely based on instinct and experience. Apparently CS Lewis said “You don’t have a soul. You are a soul. You have a body.” Maybe when patients understand this concept, they will be able to sense that your physical being will slip away, but more importantly, your soul/consciousness/inner light/energy will be okay too?
I wonder if it could not help their loved ones? It might help them personally deal with their fears, anxieties and emotions around anticipatory grief.
I’ll leave you with another story before I go. My friend Ralph also sees Dr Brink (an incestuous bunch we are right?) and for his insomnia and PSTD tried three ketamine infusions. Ralph told me it was a great experience and a “lekker” trip, but it made no difference.
Here are a few things you need to know about Ralph. He has the EQ of a lampshade, he is highly intelligent, he is richer than almost anyone you’ll ever meet, he lost his 4 year old son in a tragic horrendous accident … and he’ll give up all his money in a second to have his son back.
Because of his lack of emotional capacity I often tell him I love him, just to see what terrible response he’ll give rather than ever saying “ I love you too.” He usually responds with “Thank you,” “That’s nice,” “You should,” “Very good,” or “Obviously.”
Recently I told him I love him again just to be annoying.
He said: “I love you too.”
Seems to me ketamine made a difference after all.
So, in the end, ketamine is not the wonder-drug that can fix the world. It did not give my husband back his hearing. I still intensely feel all the losses and the grief in this special world on the edge of life and death. We don’t have absolute answers about curative and palliative journeys. But something has quietly shifted. The edges are softer, the dial has been turned to a clearer signal, and we’ve made room to say, “I love you too”.
Could this be the real hope this medicine offers – not to escape life but to find a gentler way of just being human together, here on the precipice of this life and whatever comes next?