We're delighted to present an extract from Neither Weak Nor Obtuse, the new memoir by Jake Goldsmith, a young British writer living with cystic fibrosis.
He is also the founder of the international literary award, The Barbellion Prize, which is dedicated to the furtherance of ill and disabled voices in literature.
"I am very ill. That would be the first and most obvious thing to know." Thus begins Goldsmith's memoir, a sustained, profoundly honest and searching reflection upon the phenomenology of illness: how we perceive and respond to living with illness and dying from it, and how we fearfully evade doing so.
I have always loved in my strained and worried way so many things about others, even those that go beyond what I could ever understand. No matter what misgivings I have or compromises I can see the need for, I cannot change much about those I love without feeling guilty - and in wanting major changes to one's lovers one shows how they fail in loving, and harm those they adore. Nothing is enough for them and they dream with so much ambition. They become most adept at dreaming of new obligations, yet another each day, yearning for what they cannot discover and for fresh new demands. And then there are those who don’t deserve love... I am left with a knowledge that love can’t wait so long. A shared bedroom, a hand held in yours, I can’t see much else that matters. It is not puerile or quaint to say it. It is just too commonly said in dull and repetitive ways, emptily, without a real heart to it. What diktats are so urgent and demanding? Do you need these patterns and strategies? I can’t fulfil most, if any, and there’s the prospect of worse things that take priority: fear, a most awful of things. A fear of being alone before I go.
These are the layers that make loving so much more desperate. The chronic sense is constant, ebbing, the flavour left in your mouth, only sometimes clouded and warped in everyday concerns. You wake dazed at night, soft jazz humming as in some atmospheric cliché, and see the impending menace. You know everybody will face it, but the saying loses its bite and has no real severity. It becomes meaning- less to suggest to those full of life that they will meet an end. They will not feel it deep within their bones until too late. I have to stress again, and again, that for those others, those I fear hurting (as if one is egregious?) by claiming I’m special... their death is far away in their thoughts. We are all in the same boat, as the dull saying goes, with death as the most certain of possibilities. But most could not live, without exhaustion or inertia, in constant fear of random Leviathan attacks that suddenly topple their boat. Their boats are sealed and seaworthy. And if we are to milk the metaphor, they sail in less stormy waters. So they may sail to the many shores they can choose. My boat bears a resemblance, but it’s already sinking. Born with the water already lapping at your feet, and what shores can you choose to set sail to? Failure seems more disastrous. What shore where there’s a hand to hold can you get to when the water is at your neck and you barely have a boat left? Drowning is imminent. Maybe I can be permitted this gloomy solipsism? Maybe I am allowed it after denying it so much, through fear of giving offence? Having been assured that it is okay to say things and note these real phenomenological differences, can I have this?
I am allowed my boat metaphor.
No one properly appreciates the cliché of urgency to life because vehicles could hit and kill you; they can live and ignore and be young and free and it is enviable. I am crudely poetic here, rather than attesting to psychological realities to substantiate the claim that death, illness and dying are not often confronted. I have done that before, I guess.
The Denial of Death will hold true, with the heroic sense of immortality still vibrant and gripping. Since birth my body was known to fall short, where most would have a far greater chance to thrive and protected from the commonplace alarm at disability. Few conduct themselves on the 'what if’ of remotely possible accidents tomorrow, and less tormented are they by darkness visible. They do not ache so hauntingly and consistently in their everyday moves. They do not live by laboured breaths and can stand still most days without their bodies buckling, and they can run without dying in coughs and rasps. And when they do cough they do not feel the ripple of quakes and aftershocks course through their body as a forceful reminder of a protracted bodily reality.
They are not slowly dying by chronic measure, they live with an attitude and manner of life unto life and not unto death, and their own pain is something else; by any reckoning a little less terrible, less persistent, and a little easier to endure through their happy distractions. It is not dismissive of them to say that. You hear it from them. They’ve said it to me as they offer false hope and plan things for 20 years time. They don’t speak death’s name and disbelieve the disabled’s case. There are, too, the ubiquitous sorts that spit at wheelchairs and those with leprosy—they dismiss entire lives. Life itself, even.
Neither Weak Nor Obtuse by is published by Sagging Meniscus