Monday, May 25, 2015

Who I Am

A little while back, my wife commented that I am different now than I used to be. It was not the first time she had said this, but there seemed something more significant in the way she she said it this time around. Maybe it is because she posed the comment in the form of a  question. “Do you realize how different you are now?

In every case, “now” has referred to changes she has perceived in the me who has MS as opposed to the me who did not. The me, in other words, whom she had married in 2006.

As usual, my answer to the comment was brief and essentially dismissive.

Yup, it’s the new, improved me, I said.

She made it clear, in a word or two, that she wasn’t so sure about the improved part, and then the subject trailed off in the usual way, like a wisp of momentary smoke or a passing scent of incense in the air.

Is it something that I don’t want to talk about, or is it something that she doesn’t want to talk about? Is she just making a statement of fact, as far as she sees it, or does she want me to explain myself?

This would require some thought, some introspection, a degree of honesty that might border not only on self-betrayal, but betrayal of all the promises I had made to her and to myself – to us - some eight years ago. I am strong and able. I will take care of you. I will be your strength and never your burden.

Harapan kamu adalah harapan saya; mimipian kamu adalah mimpian saya,  I had said to her in her native tongue in my wedding vows. Your hopes are my hopes; your dreams are my dreams.

So where does my weakness, the failure of my body, my unasked for illness fit in to all this? How has it happened that I have become what I said I would not be; and what excuse can I offer?

How, exactly, have I changed? In many ways, I think – and these changes turn out to be a complex mix and intermix of physical disease processes, unwilling but necessary acknowledgement and conscious alterations in emotion, attitude and approach.

Recently, I talked to a friend, and fellow MS’er, about stress and how, over time, we learn to appreciate the detrimental power of its effect on MS. We have either to suffer continual relapses and/or worsening of symptoms or we have to change the way in which we negotiate stress. We protect ourself in the interest of the greatest benefit, and yet we may seem to others, especially to loved ones, suddenly detached, insufficiently concerned. Is this one change that my wife sees in me? Is she disappointed at a seeming unwillingness on my part to to engage in a really good shouting match, as I used to do? Does she take this for a lacking in the intensity of my love?

I don’t know the answer, and she probably doesn’t either.

I do care, of course, but now I try to breath first, take time, take advantage of silence. Instant words of reply are easy, but often unhelpful. They are swords to be employed by people who have the health and stamina for fencing – and, like it or not, I no longer have the energy or the agility for the sport, for I know it would be the death of me, or, at the very least, the ruin of my health.

And so I have changed. But has my edge gone dull or merely my temper? Where once I was angry, now I’m contemplative. Where once I was quick, now I am slow. Where once I had a meltdown, now I merely stew.

I am different, yes. I have one-tenth the energy I used to have, yet ten times the patience. I have half the mental ability, but half again more tolerance and love.

But are gains such as these recompense for the multitude of deficits that come with MS? Are my original vows made null and void, and has my misfortunate – which is also, by default, her misfortune – become the center and usurped my own original intentions?

To the first question, my answer would be no. To the second, it would be that I hope not.

We like to say, defiantly, that we will not be defined by disease. But defined we are – for definition lies in the appraisal of others. I am, in some quite essential ways, different than I used to be, and it is my disease that has made me different. I return to where I started. “You are different than you used to be”. There you have it. We work with the clay that happens to be in our hands. We create and recreate, according to the combined patterns of hopes, dreams and realities. I am who I am this moment. I’m working on who I will be from this moment on.

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