weekend worthy

My husband and I have often wondered what our lives would have looked like had we known that I had multiple sclerosis sooner.  I’ve likely had it for about 12-15 years, based on our hindsight-is-20/20, oh-so-scientific calculations.   What would have been different?  What would we have changed?  Would we have gotten pregnant when we did?  Tried sooner?  Later?  Never?  Would we have traveled when we did?  Worried more?  Worried less?

These are impossible questions to answer.  We don’t know because we didn’t know.  And mostly we are glad that we didn’t find out until last year.  We got pregnant without worrying about the inevitable postpartum flare ups – which I had with both boys but didn’t know I was having – and we traveled (at times with difficulty) wherever and whenever we wanted.

On the flip side, if we had known, I likely wouldn’t have chased my tail for thirteen years going to doctor after doctor after doctor, trying to figure out what was wrong with me.  It’s difficult to describe to those well-in-body how much this affected me on an emotional and spiritual level, without even touching on the physical level.  I wondered at times if I was imagining things or making things up.  I thought it was my fault that I felt the way that I did.  That I wasn’t trying hard enough, eating well enough, researching long enough, exercising the right way, taking the right supplements, seeing the right physicians.  The endless search for an answer, a reason, a magic cure…

I read today a section in Awakenings by Oliver Sacks (a seemingly throw-away section in the prologue!) that summed up my experience so well it literally took my breath away.  I read these paragraphs and couldn’t believe how well they articulated my experience.  I’ll be pondering them this weekend and wanted to post them here — to help me process them a little more and to share them with any of you who have also experienced the never-ending quest for an elusive answer to a medical malady.

There is, of course, an ordinary medicine, an everyday medicine, humdrum, prosaic, a medicine for stubbed toes, quinsies, bunions, and boil; but all of us entertain the idea of another sort of medicine, of a wholly different kind: something deeper, older, extraordinary, almost sacred, which will restore to us our lost health and wholeness, and give us a sense of perfect well-being.

For all of us have a basic, intuitive feeling hat once we were whole and well; at ease, at peace, at home in the world; totally united with the grounds of our being; and that then we lost this primal, happy, innocent state, and fell into our present sickness and suffering.  We had something of infinite beauty and preciousness — and we lost it; we spend our lives searching for what we have lost; and one day perhaps, we will suddenly find it.  And this will be the miracle, the millennium!

We may expect to find such ideas most intense in those who are enduring extremities of suffering, sickness, and anguish, in those who are consumed by the sense of what they have lost, or wasted, and by the urgency of recouping before it is too late.  Such people, or patients, come to priests or physicians in desperations of yearning, prepared to believe anything for a reprieve, a rescue, a regeneration, a redemption.  They are credulous in proportion to their desperation — the predestined victims of quacks and enthusiasts.

This sense of what is lost, and what must be found, is essentially a metaphysical one.  If we arrest the patient in his metaphysical search, and ask him what it is that he wishes or seeks, he will not give us a tabulated list of items, but will say, simply, ‘My happiness,’ ‘My lost health,’ ‘My former condition,’ ‘A sense of reality,’ ‘Feeling fully alive,’ etc.  He does not long for this thing or that; he longs for a general change in the complexion of things, for everything to be all right once again, unblemished, the way it once was.  And it is at this point, when he is searching, here and there, with so painful an urgency, that he may be led into a sudden, grotesque mistake; that he may (in Donne’s words) mistake ‘the Apothecaryes shop’ for ‘the Metaphorical Diety’: a mistake which the apothecary or the physician may be tempted to encourage.

When I first learned that I have this disease I wanted nothing more than to go back.  But to what, I wasn’t sure.  Back to high school, before my first episode when I lost my vision?  Back to pre-pregnancy?  Back to the postpartum episode after I had Isaiah that seemed to kick things into a higher gear?  I honestly don’t know.  I only know that I had, and still have, a deep and profound yearning for to be, in Sacks’ words, whole and well; at ease, at peace, at home in the world; totally united with the ground of my being.