y condition has been very serious, the worst it has ever been.
I won’t be coming out of hospital any or much healthier than when I came in, despite improvements. Which means I will need oxygen at home now. The general trend is downwards. Annoyingly, the doctors can be equivocal about it and you need to read between the lines and subtlety, because they’re not Dutch about things.
I was very, very unwell, more than my parents or doctors realised, when I was admitted and they have been pretty worried about me. It was 50/50 at one point, quite honestly, and everyone was on edge.
I am improving on some level; I am eating and maybe gaining some weight. I am making small improvements with my oxygen saturation and so there are upwards trends. But the overall trend with my illness is down and they talk about me ominously. Frankly they’re (at least some of them) bad at it—they’re not good at either being clear and precise for fear of being too cutting, and they’re too vague otherwise. They only sometimes like to be straightforward when it’s right near the brink, I believe, when talking to CF patients about their prognosis. Unsure. Hard to say. Some are better than others.
I should be out of hospital, hopefully, in the next couple weeks. Despite my tone, I am actually improving every day and more capable of doing things, more and more each day. There is good news. But all optimism is tempered, I have a long way to go, and in the longer term cystic fibrosis still is what it is (a horrid phrase, but apt, surely).
When I’m out of hospital and no healthier than when I came in, but still a bit better, that means walking will be just as limited as it was. I’ll need my wheelchair more and I’m likely going to struggle with basic things like stairs.
My friend Will proposed going for walks and being stern with me—that won’t be possible. I will be able to walk a limited amount but will be dependent on the wheelchair.
I have also heard doctors speaking to Mum when I am half-asleep, or when they think I am asleep they talk to her. Again, they have been ominous and bleak in their tone, but in a calm way at least, if that somehow makes it less frightening.
Death reduces everything to indecision, as Larkin said. It paralyses you. I look at what’s coming and I’m a rabbit in headlights. There’s no escape, no reprieve. No better whined at than withstood. Bravery lets no one off the grave. I just have friends to comfort me before I’m hit. I have maybe a few years left, again it’s hard to tell. It’s all precarious.
I have zero spiritual comforts. All, always, seemed like alien nonsense. I don’t like it, but I think it’s hubris to assume we could know anything else behind or beyond the most basic observation. I guess I cope with what could be called a ‘material sensualism of friendship’. Epicurus is basically backwards on every point except one: ‘Of all the means which are procured by wisdom to ensure happiness throughout the whole of life, by far the most important is the acquisition of friends’.
Everyone else is myth. I’ve written about it and thought about it enough already, it tires me. I just want to get out without much pain and bruising.
At least I have plenty of people to talk to though, or I write to them.
There’s always been a different phenomenological awareness around death for me because its fact is always neurotically present in my mind and it’s harder to forget it than if I were not unwell. It’s always been there. That awareness doesn’t make it easier to face or less scary. In some ways I’d rather be taken out in an instant, unaware. Or in my sleep.
I’m just glad and immensely grateful I have support.
There’s always something I call ‘pub talk’, where hard and grizzled men, or really anyone, in the comfort of a pub or café with a drink and friends will idly talk about suicide or euthanasia. "I’d rather you shoot me dead than let me slip away with dementia"; but 90% of the time this is all talk, where few, myself included, will really be prepared for the animal grief and agony, or even the boring listlessness, of death or coming upon death. Most won’t know what to do, or remain paralysed, or don’t think about it at all. Or don’t get a choice at all—which may somehow be the better option.
Achieving worldly wisdom in humility and self-awareness still does not prepare for the final experience, for real grief, by plan and prediction. Virtuous instructions don’t prepare one, coolly, in experience for agony. You cannot inoculate yourself, or tranquillise yourself, outside of words with a supreme effectiveness. You’re too impotent and your mind isn’t the psychic inquisitor of the heart. It’s a poor old man giving occasional advice and direction. It may not be followed, and maybe sometimes it shouldn’t. I won’t say definitely and I lack the intelligence.
I find it much too difficult to account for my emotions consistently. I feel numb or aloof most of the time. It’s only occasionally a shock—not a surprise, but a shock. It’s often more creeping and looming than something acute. I think my most common emotion is feeling completely adrift.
It’s popular to call this ‘disassociation’, but really when I see it described like that by people who appear, in my sanctimony, as closer to normal and conventional people able to participate in society in everyday quotidian ways I cannot fathom, they’re Holden Caulfields or Bojack Horsemans. Faux and fashionable ‘depression for normies’ that I’m perennially outside of—beyond.
If I express that in the wrong tone, I seem arrogant. Yet I’ve done enough self-loathing, I don’t feel arrogant, and friends at least tell me that my experience should trump the perceptions of a blithe public. I am always wary and always have been of appearing sanctimonious just by speaking bluntly, and I have to keep being assured by others that I am actually fine to think these things, and with less equivocation and self-policing.
I’m in a pessimistic mind where I don’t expect any grand things from life and I value the mundane. I don’t expect much at all in the sense of achieving real justice in the world—justice that is sustainable and lasting—and nor do I expect much in the path of avoiding ecological catastrophe. We’re doomed and all we can do is mitigate damages and try not to hasten so quickly our annihilation.
But that’s no excuse for putrid nihilism. I’ll still want people to try to do good things because mitigating suffering, even without any grand ideals, is a good end in itself—and I am not one for augmenting injustice and suffering if my main contention is that injustice is so abundant. You could pithily call it optimism without hope.
I wish all my friends and closest family the best lives and the best futures, and they should still work for it, stalwart, in the face of all cruelties. Those I love dearly and who have given me the sense of gratitude needed to live, I owe them my life. I hold their hands tightly.
Jake Goldsmith, 25, is a writer with cystic fibrosis and the founder of The Barbellion Prize, a book prize for ill and disabled authors. He is the author of a memoir, Neither Weak Nor Obtuse.