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Illness and Choice

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Illness and Choice
By A.G.Moore 12/1/2013

Image from Reusable Art
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There are so many turns in the path every day of our lives, so many choices to make, that determining the right choice becomes an important skill. Dealing with a chronic illness may change the kinds of choices we face, but the process of weighing options and consequences remains the same. This past week, in which most U. S. residents celebrated Thanksgiving, I went through this process and came to a decision about how I wanted to celebrate the holiday. Health was one of the factors in my calculus, as was tradition and a sense of legacy. In the end, a compromise was reached, one that carried a risk but also the promise of rich reward.

Nine years ago my granddaughter was born; I’ve had lupus for more than twenty years. While I’m actively engaged with my granddaughter–we play board games, dance, draw, write stories, dress dolls together–there has always been in our relationship the influence of lupus. My granddaughter knows I cannot go in the sun; I get “tired”; if she has a cold I wear masks and gloves. As involved as I am with the child, lupus has been a factor.

This year it occurred to me that my granddaughter has never seen me cook a holiday meal; these home-cooked feasts have always been a part of my family tradition, but for the last nine years they have been prepared at someone else’s house or at a restaurant. It was time, I decided, for culture to be transmitted.

I made my plans with a nod toward practicality. The formal holiday repast would still be consumed at a restaurant, but a separate meal would be put together the night before. At this event there would be no time pressure, no responsibility for making sure everyone had a satisfactory culinary experience. The pre-holiday exercise would provide the leftovers that are almost as important on Thanksgiving as the meal itself.

The choice to assemble this large meal was made in the context of another choice I’d made–to stay off prednisone for as long as possible. Prednisone, I am well aware, is a treacherous friend, one that seduces by offering relief and then betrays by inflicting organ damage. (See an article in Oxford Journals for a discussion). It was likely that if I went forward with the pre-Thanksgiving meal my prednisone hiatus would be over.

The evening before Thanksgiving went well. My son shopped and supervised little fingers as they learned to chop and dice sweet potatoes, olives and nuts. At one point, about two-thirds of the way through, my legs quivered. That was a sign. As the Hospital for Special Surgery states, if you have lupus, fatigue may be an issue and “…when fatigue hits, you need to let go and rest”. But my mission was not complete; so I pressed on.

At 5:30 the next morning I began a low-dose regimen of prednisone. Perhaps the necessity for taking prednisone would have come about if I hadn’t cooked–there’s no way to know for sure. Some seven hours later the family met in a restaurant for dinner; I made it but could not eat.

Increasingly, as time passes, I reflect upon the choices I make and the value I want to harvest from my days.  At my age this is a different calculus from what it might be for someone younger. The gift of time has already been granted to me, and it has been appreciated. Which means it’s reasonable to ponder, do I want to secure maximum time possible from life, or is it more important to extract from the time left maximum significance?

This Thanksgiving I settled on significance. I’d love to feel great and to be off prednisone, but I made a choice within the reality of my circumstance. This is no different from what everyone does all the time. Choices have consequences. If a chronic illness is in the equation, the consequences may be different but no one gets a free pass.

I’m OK with that.


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