July 2005, revised February 2006
When you're seriously ill, everybody thinks they must hurry along and visit you. Or they desperately want to talk to you on the telephone. Apart from my very nearest and dearest, this was the last thing that I wanted in the period after diagnosis and while I was on chemo. And since then, as I have gradually become weaker and wearier, it has become more, not less, of an issue.
I want to exist primarily as a virtual person, via my mailbox and not via visits or telephone calls.
The reasons are many.
Talking is in many ways the most tiring thing for me. It causes me physical pain (in the neck) if I do too much of it. And I find myself getting stressed and breathless as soon as anybody says anything which seriously annoys me or runs counter to the way I'm trying to handle the situation.
I can't concentrate on "long stories" being related to me. I find it very difficult indeed to "think on the fly". Both these tendencies were apparent from the start - they were becoming evident before diagnosis. It gets frustrating in telephone or visiting situations, where an on-the-spot response is expected. I like email because it gives me time to reflect before responding. And I don't have to read an email if it's boring to me.
Sitting for any length of time is uncomfortable for me. People who aren't walkers habitually suggest outing in car to tea shoppe etc. - but of course since sitting is uncomfortable, such notions are most unattractive. For me to be able to relax with a visitor, they need to be able to walk with me.
I'm very restricted in the times of the day when I'm up for visits. If I deviate from my daily routine, I rapidly become unbearably weary. I have to make it a rule that I'm not available for evening visits, or visits which conflict with my resting times during the day.
Afternoon walking companions have been the only real exception to my "visitors unwelcome" rule. Over the past year, I've greatly enjoyed the company as walking companions of old friends and newer friends from the village. I have to be careful who I choose, though - I'm easily irritated by people who talk too much on walks, people who are emotional about the situation, people who aren't sufficiently likeminded with me, people who fret and fuss about me. ("Should you be walking this far?", "Isn't this too difficult for you?" etc. etc.) And increasingly as time has passed, talking whilst walking has become physically very difficult and tiring. By January 2006, it became a complete impossibility to talk whilst ascending even the shallowest slope. My right lung had decided to put itself to rest by then - "unilateral diaphragmatic paralyis" caused by pressure of my mass on the right phrenic nerve. With only one lung functioning, it's just too much to get the breath to climb a hill and talk at the same time. Companions who think fine, I'll do all the talking on the uphill bits, can be problematic. It's hard to keep focus on long stories when you need almost all your energy just to keep walking. And if I do manage to sustain my attention, the chances are that I'll desperately want to comment at some point, and then make myself feel very ill by talking when I shouldn't be.
The only time in the day when I feel capable of any sustained period of "brainwork" is in the mornings, and then for not more than a couple of hours. Beyond a 20 minute cuppa with a friend from the village, I feel deprived and frustrated if people intrude onto this limited amount of brainwork time available to me, of which much too much is already consumed by hassling around over such things as benefits, negotiating ill-health retirement, genning myself up on medical information etc.
It's one of life's ironies I suppose that the reasons people give for "in-the-flesh" visits being important to them, are the very reasons why I much prefer email contact. People often go on about how when you can't see somebody's "body language", you're lacking a crucial source of information. The reality is, if you're seriously ill and handling a lot of pain, it's downright misleading for people to read conventional meanings into "body language". Visitor asks me something. I'm replying, then suddenly I stop dead. "Aha", thinks visitor of the type who makes much of such things as the meaningfulness of silences, "I've hit on an issue which is of real importance here". Well no actually, talking gets painful if I let myself run into paragraphs rather than brief sentences. At some point the sensations in my neck become so obtrusive that I have no alternative but to stop dead. It's all too often notable - and bloody irritating - that, once I recover sufficiently to explain this, visitor's attachment to their perceptive body language interpretation gives rise to evident doubt that mine is the truthful explanation. Eye contact is another thing where the same issue arises. If I keep my head still and facing in the same direction for more than a few minutes, pain sets in, in my right neck and shoulders. So, every few minutes I move my head so it's facing in a different direction.
To sum it up, these days it isn't the visitor and my conversation with them which is the primary factor dictating my body language. It's pain, and my pain management techniques. As a virtual person, communicating in my own time, at my own pace, I'm entirely free from the risk of my body language being incorrectly interpreted. What a tremendous relief.
One of my sisters says: "The trouble with email is that you cannot see a person's face and gauge their reaction and adjust how you say something accordingly. Seeing a face and hearing a voice imparts an enormous amount of information instantaneously."
Viewed from my perspective, it's precisely this instantaneousness of what's communicated in visits which makes me feel under pressure to perform - something which I very much don't want. Fortunately most of my friends can appreciate this. As one of them says: "I totally understand that you might want to keep swarms of well wishers away - they can be burdensome in themselves! My mother was diagnosed with breast cancer in autumn 2003, she couldn't say "no" and often found herself exhausted from the sheer effort of having to put on a brave face. In the end, I said "no" for her and she found it much easier to concentrate on dealing with the many challenges cancer brings and focus on the things which were important to her."
There are times when I'm down and times when I'm feeling especially like shit and I most definitely do not want these times to be the basis for circulation of reports to others about how I am. Email gives me control over what I say and don't say and lets me give an overall picture of how I'm handling things rather than other people inaccurately reporting on the impression of a passing moment. I want it to be the strong me who people relate to, not the one who gets frustrated because talking is so tiring and as a result is much more likely than usual to become miserable and weepy and cross.
Sometimes I feel a bit of a cheat - I can edit myself into a virtual superhero. But doing this is in itself part of what keeps me strong. The discipline of producing progress reports every 3 or 4 weeks has the effect of making me take a grip on myself if I'm feeling pathetic.
A couple of people have mentioned the benefits of immediate apologies being possible if you upset somebody when face to face. But in my experience, people are just as likely to tiresomely argue the toss if I react negatively to what they're saying.
Perhaps I'm cold, not fully human, but apart from my very nearest and dearest I don't see what the big deal is about seeing people in the flesh. Some people say they "just want to give me a great big hug". Physical hugs can be positively uncomfortable for me and I also have a strong sense of wanting to keep my own space around me.
Email is vastly more efficient as a means of communication than talking to people. Repeating the same things endlessly to different people is extremely tedious. You can't copy and paste conversations. Sending out a regular progress report to all my friends and family works really well - I can then just write brief individual replies to the loads of wonderful supportive emails I get in response.
I have been very pleasantly surprised that my consultant is happy to communicate with me by email. I find it far easier to absorb what's being said when it's communicated in written form. During chemo, hospital appointments with the consultant are arranged the day before chemo is scheduled. In my case,after I had had four chemos there was the question of whether to continue for a further two sessions. It made all the difference being able to discuss the pros and cons in advance with the consultant, and being able to reflect on the issues, rather than having no opportunity to discuss until the day before a fifth chemo was scheduled, and then having to make an on-the spot decision. I get the impression that the consultant is using email very efficiently, and doing a lot of copying and pasting of standard information into her replies - at any rate, she seems enthusiastic herself about the benefits of email.
I'm not alone amongst those with serious illness in my negative feelings about visits. One friend completely banned all visits (even from her son) for a period of time. She says "I only had two bad reactions, one of whom was my brother - although we're not close, he seemed to think that he was entitled to access more than anyone else." At least one of my siblings appears to think in much the same way.
It strikes me that siblings are likely to be a particularly difficult issue for many people. There is such a wide range of expectations as to how siblings relate to one another - for some, it's a bond comparable in its depth to mother-child relationships, while for others, there is little or no sense of closeness. These variations will often co-exist within the same family. My view is very much that you don't choose your siblings. If you have a close relationship with some or all of them, that's great. But if not, that's just how it is. Unfortunately, those who believe that siblings "should" have a close relationship with one another, tend to regard this view as innately superior, the right and proper way of looking at things. This can make life very difficult when imposed upon you by a sibling who isn't somebody who you would choose as a friend. Especially since these differences are likely to come to a head at times in your life - facing death most obviously - when you can definitely do without other people telling you how you should be handling the situation.
I have the added emotional weight of predeceasing my 94-year old mother, who lives in the Orkneys. Visits from a distance always involve Arrangements, and don't lend themselves to last-minute cancellation if I don't feel up to it. This makes them a very different kettle of fish from arranging walks with local friends. I am genuinely petrified at the prospect of Big Visits. "Banning" a visit from my mother is a hard thing to do, and I know that by doing so, "hard" is exactly how I appear in the eyes of my siblings. But I can't bear the idea of how emotional it would be. I feel strong in how I'm facing the prospect of death, but I also feel that this strong me is walking on a tightrope, precariously balanced. I am terrified that being face-to-face with my mother's emotions could push me over the edge, make me lose my grip. I don't dare to risk it.
I'm fortunate, though, in who my mother is. I think that even at her age, she has the depth of intellectual understanding, and at the same time cares for me at a deep enough level, to accept what I want however much she would wish that I wanted otherwise. And, at the age of 94, she has been willing to learn to use email so that she can communicate with me.
My mailbox is where I'm writing everything I want to write, where I'm doing almost all my "general socialising". It's been a joy to me that I now have almost all my most valued friends from schooldays onwards here with me in my mailbox. As well as my mother and all my siblings. The sibling who I have always felt least close to has made a real effort to take on board communicating this way, although she was initially somewhat indignant about it. She has also made a real effort to empathise with me, even though our life philosophies are radically different. I hope that one of these days the same will happen with the other of my siblings who I wouldn't choose as a close friend.
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