Control Freak

July 29, 2006 at 8:50 pm (Uncategorized)

My friend Amy told me she found it very interesting that I so often make the connection between being chronically ill and being a mother. At first, I wanted to say “that is not what I meant at all, that is not it at all[,]” until I realized that there was some truth to Amy’s observation, and that quoting T.S. Elliot to one of my dearest and truest friends would only convince her that I had indeed gone off the deep end.  You see, I have always envisioned this blog as an attempt to show the parallel paths of motherhood and illness.  After all, both of these life-changing events happened at almost exactly the same time in my life over two years ago.  But as I reflected on Amy’s insight, I saw that pretty often these paths don’t run next to each other.  Rather, they intersect.  And the point where being a mommy and being a patient meet most acutely is in the realm of control – or the lack thereof.

I won’t bore you with a term-paper-esque blow-by-blow of all the ways in which having chronic sarcoidosis and a toddler are akin.  Suffice it to say that both conditions frequently involve me bending my will to that of a force greater and mightier than me.  Take the whole notion of planning my day.  Pre-sarcoidosis and pre-Andrew, I would awaken each morning, stretch luxuriously in my bed, and plot my upcoming day.  Would I start the day with a walk on one of the trails that threaded through the hills behind our house?  Or should I go to the gym?  Perhaps I should head first to my home office and plunk out some words for my latest writing assignment?  Or, if my work life wasn’t too busy, maybe I should make a triple latte, bring it back to bed, crack open a book, and read in bed for a couple of hours?  Decisions, decisions, decisions!

Now, as every other parent in the galaxy can corroborate, mornings post-child are a bit more, shall we say, frantic.  I typically crack open one eye against my will sometime far too early for human beings to have to stir, like, say, 8am (have I mentioned before that I am definitely not a morning person, even on the best of days?), to find Andrew peering at me intently.  He usually quotes a line from one of his favorite books, Go Dog, Go, and tells me, “It is day now, Mommy.  It is time to get up!”  I’d like to report that I spring out of bed and begin a virtuous routine with my son, but I usually just groan and plead with him, “Andrew, let’s please snuggle in bed for a few minutes…please.” Whereupon Andrew will announce either that he has to go poopie or that he has just gone poopie in his underwear.  Thus begineth my day.  From there on out, I pass the hours trying to convince Andrew to play by himself while I unload the dishwasher, check my e-mail, or make more coffee.  More coffee is a central part of the equation.  It is a blessed moment when Andrea, our awesome babysitter, arrives, and I can retreat to another part of the house without a forty-pound shadow.

Once I’ve gotten physical distance from my son, though, it’s not like I return to my pre-Mommy self and undertake an inner stretch and a “what shall I do with myself today?” dialogue.  Usually, my physical condition has already determined what is possible for the day.  First, there is the question of doctors’ visits.  A week rarely goes by when I’m not dutifully showing up at some appointment or other.  Now that I have to go to physical therapy three times a week for my car crash injuries, my medical social calendar is even more packed with fun visits.  Then, even on those rare occasions when my day is free and clear, I probably just won’t feel well.  Really, I’m not trying to bitch and moan, just tell the truth.  Sitting in front of the computer is exhausting; running errands (especially in our globally-warmed temperatures of 100 degrees) enervates me before I leave the house; exercise takes every bit of my being.

I find myself asking not what I want to do each day, but what can I do?  Since I was on the under-motivated side even when I was in perfect health and I actually believe that I am highly allergic to full-time work (especially in an office with recycled air and fluorescent lights), I don’t think it’s the knowledge that I’m not getting a lot of work done that brings me down.   For me, it’s all about the loss of control.  In so many ways, my life feels like it is no longer my own, that I am the amusing pawn of a bright toddler and the not-so-amusing pawn of the not-so-bright medical establishment.

What I am still coming to grips with – and fighting with every fiber of my essence – is the notion that this state of being completely out of control is actually the human condition, and that the way that I felt pre-sarcoidosis and pre-Andrew was the illusion.  This hit me when I was recently talking with a woman who is pregnant for the first time, and she mock-complained about feeling out of control with her body.  I know this feeling well.  No matter how much I lecture myself, motivate myself, or diet, I continue to be hefty because of the prednisone and sick because of the disease – and the prednisone (see above, not-so-bright medical establishment).  But in all seriousness, when are we ever in control of our bodies or our lives?  We start physically degenerating almost the moment after we enter this world, and it’s all downhill from there: slowing metabolisms, cells that mutate and cause cancer, thighs that get lumpy after babies.  And, as every single person on this planet knows, random events change the course of our lives, for good or ill, in a millisecond. Control? I never had it, and I certainly don’t now.

That said, I would like to distinguish between the chaos brought by  my wonderful son and that of my illness.  Andrew turns everything on its head, but, for the most part, I don’t mind too much.  To use an overdone cliché about children, he teaches me what is important.  He has shown me that some of the best moments come when you don’t (because you can’t) plan them and when you least expect them.  He has taught me that I have no limit for loving another being.  I wouldn’t change a thing about him, except, perhaps, for his pathological resistance to sleep.  The sarcoidosis, on the other hand, I would gladly leave behind in a second.  I’m not saying I haven’t learned anything from it, because I have.  But I’d like to take a break from lessons in acceding to my fate and my physical limitations (somewhat) gracefully.  I feel like shaking my fist at the sky and yelling, “Enough, already!  I get it!  I have no freaking control!”  But, the sky never answers back, and before I dwell on it too long, Andrew toddles in and tells me something outrageously funny, and in that instant, I realize that control isn’t all that it is cracked up to be.

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