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Sam Redlark's avatar

This morning, I blew £160 on a replacement filling. Afterwards, I walked four miles back home feeling pretty buoyant, despite my bank account having been holed a few inches above the waterline. I may be poorer, but I also no longer have what felt like the Chicxulub Crater embedded in one of my lower molars. Possibly I have embraced some of Adam Smith's philosophy of acceptance.

My grandfather worked for Shell for most of his life. Through his association with the company, he met the war hero Douglas Bader, who also worked in the oil business. Decades prior to this, in 1931, Bader lost both legs in an air crash. He described the accident as follows: “Crashed. Slow-rolled near the ground. Bad show”. Despite his injuries, he rejoined the RAF in World War II and achieved several aerial victories prior to being shot down and captured by the Germans, from whom he eventually escaped; an extraordinary achievement for a man with no legs. After being recaptured, he was interred in Colditz until the end of the war.

In WWI, over 41,000 British servicemen lost one or more of their limbs. I do not wish to discount the trauma that an injury of this nature can wreak upon the psyche. That being said, these men would have been able to observe others with similar injuries who had recovered and who were able to get around despite their handicap and lead relatively normal lives, and in some cases extraordinary lives. There was a body of reliable evidence upon which a recent amputee could establish his hope for a better future.

In the case of Joanna of Castile, there is no such evidence. There is what amounts to a ghost story. There would have been incidences of people returning to life as a result of being incorrectly identified as dead. That is understandable. I have seen people die. When they go slowly, sometimes it is hard to tell exactly when it happened. However, even in Joanna's time, there would have been abundant evidence that in the majority of cases, dead was dead. The spark of life is absent. They put you in the ground where you eventually rejoin the Scrabble tile bag of elements that were formed during and after the big bang. There was never any real basis for her to hope.

When I was diagnosed with Primary Sclerosing Cholangitis, I read as many of the medical journal articles as I could lay my hands on. In blank prose, that will at most rise to adjectives such as 'regrettable' and 'unfortunate', I learned what I could realistically expect, along with the best that I reasonably could hope for. I also made friends who had been diagnosed around the same time that I had been given my diagnosis. I was able to measure my experiences against their own. Occasionally the discussion would turn towards medical research currently underway, or bespoke treatment. Some people would get quite evangelical about this. The way I thought about, and still do, is to frame this research and these drugs as something that will benefit the next generation of sufferers. You can help them by participating in studies that will advance these new treatments. You can build hope, though you might not be the recipient if or when it bears fruit.

Now all of the friends are dead. All the journals tell me is that I have beaten the odds in terms of survivability, though not the disease which is unbeatable. By remaining hopeful, but moderating those hopes in accordance with hard evidence, I think I have achieved a balance between acceptance of the way things are today, and guarded optimism that things might be better in the future. I am grateful for the present, where I can walk along Southend seafront on a sunny morning in Autumn, and see the geese bobbing at the tideline, and rub my tongue up against my mended tooth.

In terms of the big far-flung hopes that are entertained by the likes of Joanna of Castile, my advice would be to allow others to dream them on your behalf. All over the world there are people researching the various technologies that might restore movement to individuals like yourself. Many of these dreams will remain just that – they were too far-fetched or they were ahead of their time. However, there remains a possibility that one day a new technology that began as the glimmer of a hope, nurtured by some venture capital, might be brought to you as an emergent reality backed by empirical data.

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Harriet b's avatar

Paul, this reminds me of the prayer adopted by AA “God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference.” These words offer comfort to some but each has their own life circumstances. I really do empathise with your situation. My brother in law passed away a few days ago. He had been suffering from Parkinson’s disease for several years but, prior to this, he was an avid sportsman, spent all his days, active, outdoors. He found this illness unbearable and at the end as he lost all control of his body. He was always strong and determined, always in control. and so, no longer wanting to live he no longer ate and declined rapidly. The family hired a private nurse to administer IV and care as (being in Lebanon) they feared the hospital would be bombed, but he saw no hope at all, and as my Irish family would say, he gave up the ghost. He was a strong man in every way so we could all see how difficult this illness was for him and the toll it took on him but with his death, which we can acknowledge as a release for him, his loss has been felt very deeply, and his physical presence leaves a big hole. However he had lived a long life, over 75 years of being fully active and healthy before deteriorating dying at age 84.

Please forgive me if I sound patronising, as I fear anything I may say might come across that way as I’m not in

your situation, I am not living it, but as someone else has said, this has been a short time to adjust, to accept this major life change and Paul, to be honest, I actually think you are doing incredibly well, back teaching, writing, you mentioned you had attended a wedding in one of your posts. I think you are courageous and a brave young man.

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