Brian and I have lunch together each week when we can. We first met during French classes around ten years ago; he was my teacher. Our meals started soon after. Brian was sixty five, I was two years older and we clicked. Initially, conversation was limited – while his French was fluent, mine was still rudimentary. However, our linguistic mismatch did not stop us enjoying being together and as my French improved so did our capacity to communicate; there are now few subjects about which we can’t exchange ideas in full.
This story is not about our eating habits nor about my learning French, but about Brian’s deteriorating health and how I was unable to come to terms with an important aspect of the change. He is now an ill man and I have found myself at a loss to know how I should best express my feelings. My clumsiness led to an awkward clash, which is rare for us. As a former doctor, I should have known better!
When we first met, Brian was, to all intents and purposes, well. He had symptoms of prostatic enlargement and was taking insulin for diabetes; neither, however, interfered with a life which he lived to the full. The anxieties he might have had about his health were never shared; he saw them, or so I assumed, as no more than background annoyances.
Since those early days, the decline in Brian’s health has been horribly fast. Control of his diabetes has become more difficult so that now he often has low sugar levels and feels faint. His prostate has required two operations: the first successfully eased the worsening symptoms of the original enlargement; the second, to remove a small cancer found by chance, has left him without bladder control and needing to wear an incontinence pad. He has now also developed Parkinson’s disease and, despite treatment, his face is becoming mask-like, his hand movements impoverished – doing up buttons is a struggle – and instead of walking briskly he shuffles, occasionally even tripping over.
Added to these problems he has double vision, has just had an operation to remove a cancer on his nose and needs medicines for raised blood pressure. And, much much worse, his memory is gradually deteriorating, as is his ability to concentrate. He is, he says, no longer the same person.
Despite all the changes, when we lunch together we still chat as of old. Everything is of the moment. We enjoy ourselves as we share news, ideas, jokes and thoughts, update each other on our families and ourselves and eat well. During our meals his illnesses fade into the background and while we talk he rarely raises issues about his health, never complains and never seeks sympathy.
With my professional experience, I am very aware of what is going on and feel I have some insight into their impact. I have occasionally talked about his treatment and have offered explanations and insights into mechanisms, however, we have hardly ever talked about them in any personal way until a week or so ago and it was then that the clash arose.
I told him how I felt that I understood the difficulties with which he had to deal, how sometimes these must be hard to bear, and that how, in the way he dealt with them, I saw him as “courageous”. On hearing that word he stopped eating, his face became stern and, turning to me he said almost angrily “Joe; NO, being courageous has nothing to do with it”. He then went on to say how his life is indeed difficult. How he does his best. How he is not depressed. How for years he had thought about how his last days or years might be and, in a way, he was prepared. Yes, he has to make compromises as his body gets iller, but everybody in a position similar to his would be upset, even angry, at being described as being ‘courageous’. To suggest that people like me are brave or courageous feels insulting and is as unacceptable as our being offered pity or charity.
I asked how I might transmit to him my feelings of admiration for a friend in difficult circumstances who was resolute and unbowed. His response was clear “Just continue to share a meal once a week, help me if I ask, and treat me as you would anyone else so without being condescending. If I rush in front of an oncoming bus to save a child, you can call me courageous. If I go about my every day business, albeit with a struggle, using that word is patronising. Please refrain”.
As has always been the case, whenever I am with Brian I learn something new. His powerful reminder that I should try to view disabled people from their, rather than my perspective is a lesson indeed.
For help with writing this blog I would like to thank Brian (he asked that his name be changed), Mike, George, Jeni, Rohan, Thierry and Vivien.