Am I 70 too?

MARIE: Reading back over last week’s post, I realize that it sounds as if we’re living like 70-year-olds in contended retirement – pottering around the garden, going for little walks and taking too much interest in what’s for dinner. And to an extent that’s true. Jon has been forcibly retired for a reason, so lives a life similar to those retired because of age – even if on a good day you might not always be able to see that there’s anything much wrong with Jon and might be forgiven for thinking that we’re perhaps blowing this PD business out of proportion (the pull-yourself-together school of health care).

I’ve just read a book, Keeping Balance, by the psychologist Katherine Cuthbert who suffers from MS. She makes a very pertinent point:

Unlike someone with a moderate or severe short term illness, or other medical problem, the individual with a chronic illness would not generally take to their bed. Most likely they will not attract quite the kind of care, attention and sympathy normally devoted to someone who is temporarily ill. In sociological terms the chronically ill do not continuously occupy the status of sick people. For much of the time many chronically sick people will continue to participate … in everyday life. We are both “ill” and “not ill” at the same time. This can create difficulties in terms of how far one pushed the role of being ill, or alternatively how strongly one resists it. … An important psychological challenge for many of us who develop a chronic illness is the degree of disruption in how we view ourselves – our sense of identity.

And, I might add, the spouse is in quite a similar situation. I have to negotiate with myself, with Jon, and with the outside world in the form of work and friends to what degree I am still the old me and to what extent I am characterized by this new role as carer. When we are apart, as this week when Jon is in England, I can be entirely the old me, but find myself somewhat uneasily inhabiting a life that is full of space for my new carer-persona. In other words, this disruption in my sense of identity that Katherine talks about becomes very obvious when suddenly one side in the tug of war lets go of the rope. Which naturally brings up the question of whether I’ve got the balance right.

There’s no easy answer to that. At the end of last year and the beginning of this, the carer-pull was strong as Jon was not doing well and was being assessed for disability pension in various stressful and anxiety-inducing ways. But this summer with Jon settled into a good medication scheme and both of us much more emotionally stable, the carer-pull is lighter. The trouble is that while PD will turn up or down Jon’s need for my help, it’s not easy to match this with an equally variable work life. What employer and customer could live such an unreliable resource as I am becoming?

So instead I have chosen to permanently reduce my commitment to work down to a level that I know I can maintain through Jon’s ups and downs. When he is up, that leaves me with time and freedom to pursue my own projects – mainly writing and some volunteer work (which is much more forgiving than the paid variety). As I said last week, this is not entirely painless. I miss the clear measures of success that are the paycheck and the promotion prospects, I miss the structure imposed on daily life by normal working hours, and I confess to being jealous of friends who are holding down demanding and rewarding jobs. But I do derive a lot of satisfaction from my various projects, and they bring me into contact with some great people that I would never otherwise have met. And as Katherine says in a section about working at happiness, it is no small bonus to be able to go outside and enjoy the sunshine whenever I want to.