March 18, Pioneer

Here is the questionnaire you have to answer before you visit with your doctor: on a scale from 0 to 10, let us know about your pain, appetite, sleep, mood, drowsiness, fatigue, nausea, etc. It used to be a photocopied form we filled casually with a blunt pencil. The nurse would take it just as casually and put it in your chart. Then she would ask her questions again, and take some quick notes.

I who, in spite of the evidence, thought never to have come close yet to this pain of 10, "worst possible that you can imagine", settled often for a 5 or a 6 in the early days, and now will pick a 3. On the other hand, where mood is concerned, and satisfaction with life in general - or what is called in the medical jargon "quality of life" -, I would give myself a 2 in what I call the early days. 2 out of modesty, since, happy to be alive, I would have put down a perfect 0, were it not for my internal censorship.

Yesterday we arrived at the cancer centre in Kingston and had to wait in the loveliest waiting room of the new building, which feels more like a theatre hall than a hospital, and looks out on the lake. We had to fill the same form, this time directly on the computer. Obtained the printout and, to our surprise, found out that the data, for the last 4 visits, had been compiled on this one sheet. Therefore, you could tell, by the numbers, how I "progressed" within the year that passed, and from visit to visit, 4 in all. While most rubrics looked unremarkable - the pain somewhat the same, just marginally better, which is the case, same with sleep and appetite -, under the rubric of mood the difference was striking. Colin made the first comment since of course he knew what that was going to let loose. I protested and brought to bear my best philosophical argumentation. Of course a year ago I was happy to have prevailed over the tumor with radiation only, happy to be able to come home, happy to take up life again, even if in a new form. One year later, though, the isolation which so much contributed to my recovery has become difficult to bear, and the fatigue, which, in the beginning, was the promise that, through sleep, I was going to heal, now is the most difficult part of my convalescence. Now, that I am able to read at all, I protest not to be able to do that for more than half an hour without having to sleep immediately after. The same is true for writing. Or for any other activity that I may undertake. Those conditions of slowness, which I so welcomed fifteen months ago, have come to put my patience to a real test.

That this may make sense for Colin is one thing. But then, here comes the nurse, she who remembers what I was and looked like then. That end of november feels, for her, like three, rather than two years ago. She goes straight to the mood rubric which was, I confess, impossible to miss. These values are expressed in columns and this particular column, unlike others, went from barely a line to quite a square.

She took another look at me and wondered, for a moment it seemed like I had a stiff neck. Colin reassured her, that was not the case, but rather, our lovely new dog Bentley who is young, strong and playful, and not used to the leash. Which makes walks real tugs of war. The iPhone came out with the proof. Earlier, at the pain clinic, during our morning appointment, we had had to answer the question whether, since our last visit, there had been some, little or no improvement, with some, little or no thing to show for it. Even if initially we thought, "no improvement with nothing to show", I reconsidered and advocated for "some improvement with something to show", since, had there been no improvement, there would be no Bentley. Of course, these questionnaires do not have Bentley rubrics, only numbers.

When my favorite doctor - we share a similar temperament - came in, I tried to remind him that these are just numbers. That I had been a working woman all my life and that ceasing to be that kind of  person could not come easy. That I would have preferred never to have had to work, but since that had not been the case, I found myself now forced to mourn the loss of something I always wanted to loose.

Because, indeed, I always wandered, what would it feel like, to be an artist who did not have to work for a living? I may be, right now, quite close to this position, except for the pioneer quality of my present circumstances, which I did not expect to go together with the other. A convalescent pioneer who tries to do some writing and painting, and even a bit of music, and has to, once in a while, rate on a scale from 0 to 10 the quality of her pioneering experience.

As you may know, I have been a pioneer before, and so very proud of it too. But that is another long story. Nonetheless, I remember looking aghast at some of my schoolmates who, on the special days - like the first of May - when we were supposed to wear our red triangular scarfs, white shirts and black pleated skirts, came to school with a crumpled tie, stained and torn at the corners, hanging whichever way around their sorry thin necks. How did they not wake up early in the morning and iron that tie, that shirt, carefully washed, by necessity by hand, the night before? By their mother of course, or grandmother, whom they would have pestered at length, insisting on the importance of looking good in this outfit? Dirty tie had nothing to do with poverty, for sure, and I did not really have the concept in those days, not only because we were all poor, but because my own grandmother made her living out of laundering other poor people's belongings.

Well, you will say, what does that kind of pioneering have to do with the pioneer you are now, opening every day, through the snow in winter, through the clouds of mosquitoes and deer flies in summer, your trail, to the back of a property the Canadian government did not give you for free to clear and cultivate? Opening which does not even presuppose that you wear a red tie, although tying something around your neck to protect it is always a good idea?

Somehow, upon first laying eyes on those questionnaires, at the doctor's, the thing that came to mind were the students' evaluations, the bane of each and all teachers, except for those precious few, who are always superbly admired by their students. Not having been among them, I can reckon that one of the freedoms I have acquired, in my life as a convalescent, is that of not having to be given a mark for my work performance. But wait! I still have to, I have in fact to give myself a mark, for how I do, in comparison to how I did. And when it comes to mood, or the well being of the spirit, if we should use such an obsolete term, it appears that the task is all mine. What seemed a 0 is now an 8 where 0 stands for perfection. We rely here on a system which definitely believes in progress. And I am afraid, if 0 came at a time when things were pretty bad from a medical point of view, what chance does one have, to improve on that? If being a pioneer was such a delight under the communist regime, how am I going to compare the pioneering I am practicing now, and expect it to win?

Am I trying to tell you that there is no improving upon the original experience, no matter how difficult the conditions might appear to have been then, to the objective eye? Possibly.