Living with Sarcoidosis and Sarcoma

A few days ago a friend greeted me with a cheery, ‘You’re looking well!’ I smiled and waved a vague hand in reply since I was, at the time, so breathless I couldn’t speak. The good side of sarcoidosis is that the disease tends to give one a high colour, and the industrial quantities of prednisolone one chomps one’s way through lead to what is most charitably described as a ‘comfortable shape’ or, more accurately, make one fat and flabby. These two things are a world away from what most people identify with cancer. So, when people hear I also have metastatic leiomyosarcoma, they are often embarrassed, asking what my prognosis is, with frequent well-intentioned mumbles about palliative care and the like. My stock answer, ‘Who knows, the statistics are not encouraging but I’ve done better than I expected,’ does nothing to put them at their ease. O cruel Digitalnun!

Sarcoidosis and sarcoma are both rare diseases that wreck havoc with one’s immune system and various other parts of one’s body. The first was probably triggered by my working with some rather doubtful chemicals and not helped by living in a damp and mouldy environment for some years; but it isn’t usually deadly, and one learns to adapt to having no puff. Sarcoma, by contrast, is a nasty, sneaky beast. Neither I nor my oncologists know what caused it. There had been eighteen months of intense pain and increasingly bad temper before I was correctly diagnosed. There followed two surgeries, several weeks of radiotherapy, six months of chemotherapy, more radiotherapy and now, for a few blissful weeks, nothing in particular while I’ve been dealing with a flare-up of the sarcoidoisis and an infection. There are times I almost forget I’m ill. In fact, I don’t really think of myself as ‘ill’ at all.

You notice I called this blog post ‘Living with Sarcoidosis and Sarcoma’; and that’s exactly the point I want to emphasize. Neither sarcoidosis nor sarcoma interests me very much: I live with them, as I live with having blue eyes and brown hair. They are just part of me. There are millions of people with truly horrible diseases and chronic illnesses whose experience is much worse than mine. I have the advantage of having two that don’t isolate me from others or make me, at present anyway, physically repulsive to deal with. I am receiving excellent treatment from the Churchill Hospital in Oxford and from our local Macmillan nurses. The monastery doesn’t have to fund the drugs I take or the PET scans and other investigations which chart the progression of the disease. My illness doesn’t define me, and when I die, I won’t have ‘lost my battle with cancer’ or anything else. I haven’t the energy I used to have and my mobility isn’t what it was, but what is the point of the comparison? I am older than I was yesterday, and I’ll be older still tomorrow. Isn’t it part of aging gradually to become less able than one was?

There is also an advantage to having a sarcoma diagnosis that few may be prepared to acknowledge: one knows one is going to die. Death is no longer something vaguely ‘out there’; it is a seed one carries within, and one can feel it growing and stretching inside. I am trying to prepare for my own death, and because I am always behind with everything, I’m grateful that it hasn’t happened as quickly as I expected. My friends know what is important to me and are graciously giving me time and space rather than crowding round with their desire to say goodbye or whatever. I appreciate that, just as I appreciate my community’s determination to make life go on as normal and all the people, many of them personally unknown to me, who have been praying for me and those involved in my care. It gives one a great sense of what the communion of saints is, here and now; and for me that is a huge plus. It is something I might never have known had I not become ill.

A good death is like a good life. It doesn’t just happen. It has to be made; and because it has to be made while we are still alive, it helps us to see dying as part of life, a part of living. One of the great graces of monastic profession is that it situates the whole of our lives in the context of the Paschal Mystery. We are taken up into Christ’s death and hope to share in his resurrection. Everything has meaning. Unfortunately, it doesn’t follow that we can explain everything, nor do we necessarily understand. ‘We walk by faith, not by sight.’ That is very much how I understand living with a deadly disease, whether it be cancer or something else. It is harder on those who do not themselves have the disease; who can only watch, wait and suffer. They are the true heroes, the ones who genuinely do battle, and for them the end is always tinged with an element of defeat because they do not always see the enormity of their triumph in helping another to die well.

If you have read this far, I hope you will pray for all those who are in such a position, accompanying someone who is dying; also those who know they are dying but are afraid, or whose lives are suffused with a sense of loss and anxiety for the future of their families. They need our prayers. As for me, I’m blessed; I know it, and I’m profoundly grateful.

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Costing Not Less than Everything: the Fourth Step of Humility

Many a monastic superior has waxed lyrical about St Benedict’s fourth step of humility (RB 7.35–43), and why not? Benedict takes an unexceptional statement of Cassian, to the effect that a monk must always be obedient, gentle and patient, and applied the rambling and exhaustive gloss of the Rule of the Master to a situation that ought not to exist but is, alas, only too common, and not only in monasteries: obedience to an unjust, harsh or otherwise misguided superior.

Benedict does not say, as some would like him to say, that obedience must be total and unthinking, no matter what is ordered. That is slavery and, where what is commanded is wrong, sinful. We do not cease to be morally responsible for our actions just because we have vowed our obedience. Indeed, the Church has always maintained that the obligation of the vow of obedience extends only to what is lawful: we are obliged to obey in all that is not sin but we have the duty to protest and oppose when sin is in question. What Benedict is tackling is how we obey in an imperfect rather than sinful situation and the kind of humility it requires.

His first recommendation is that we should embrace suffering, quietly and consciously, tacite conscientia patientiam amplectantur. It is a beautiful and much disputed phrase suggesting a noble lack of outcry when subjected to harsh and unjust treatment. Very few of us actually manage that. We rumble inwardly, even if we are not brave enough to articulate our anger and distress outwardly. But Benedict goes further. He reminds us that this quiet embracing of the situation is rarely a once-for-all response. We have to go on, standing firm, never giving up. It is obedience for the long haul and it will test our humility to the limit, just as it tested the Lord’s. In Latin ‘patience’ patientia shows its connection with ‘suffering’ patior more clearly than in English. Throughout this passage, therefore, Benedict plays on the double resonance of the word and when he piles on example after example of suffering patiently borne, we are almost crushed by the weight of scriptural and theological reference.

There are some significant shifts in vocabulary between RB and RM, but the important point to note is that Benedict is constantly referring to the paschal mystery and situating our humility and obedience in the context of Christ’s saving death and resurrection. And then the killer point: ‘To show that we ought to be under a superior (prior, the first time Benedict uses this word for ‘superior’, instead of RM’s maior), it adds, ‘You have placed people (ie. fallible human beings) over our heads.’ (RB 7.41) That doesn’t allow much wiggle-room, and it is made worse by remembering that in the Ancient Near East, it was the custom of victorious rulers to place their foot on the necks of their defeated enemies. One hopes that Benedict didn’t know that and was thinking merely of the coenobitic system where a community is led and governed by a superior. Either way, Benedict is uncompromising. We just have to get on with the business of living with imperfection.

What I think the non-monastic reader may miss in this chapter is the daunting dailyness of it all. In a large community, with its complex system of obedientiaries (managers or officials), obedience isn’t simply given to the superior, it is given to many and the chances of encountering rough or hostile treatment are greatly increased. Many a novice has anguished over the right way to respond to a crotchety senior; many an obedientiary has tossed and turned about the rightness or otherwise of abbatial policy. There is, however, another side to the fourth step of humility, and one that ought to be recognized. Everyone in the monastery strives to practise it, and it means admitting that one’s own conduct may fall short of the ideal. One of the most luminous memories of my own novitiate concerns the late D. Hildelith Cumming, a brilliant musician and one of the few world-class printers monasticism has produced. We had, as many did, some spectacular rows. One of the most heated concerned payment of tax, I arguing that we should always pay in full and not expect any concessiosns, she arguing against. I was left feeling crushed and sore but after supper that night I found D. Hildelith waiting for me. She embraced me in a bear-hug and said, ‘I was wrong, my dear; you were right. I’m sorry.’ That was the fourth step of humility, and I have never forgotten.

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