Saturday, February 9, 2013

Benjy, My Hero

The weirdest thing happened last week. Within two days of each other, two of my friends, both of whom are acquainted with our family's challenges, sent me job listing with the note, "Thought of you when I saw this!"

Well. That has not happened in a very long time, and I felt a pang when I read about these jobs, which did seem very interesting.

My response to both friends was, "Thanks for thinking of me but I could not possibly be a reliable employee. I don't think work is in my cards for a very long time, if ever."

It was harder than I would have thought to write those words. When I was working (and trying desperately to keep my family, my Benjy especially, afloat), I urgently desired to be a "full-time" writer, writing during my scarce quiet interludes and otherwise taking care of all the stuff that never got done in the past, or got done when I was supposed to be working and caused me relentless anxiety and stress. I did not like being simultaneously a half-assed professor and a half-assed mother. Not at all.

When it finally came to pass that I could mother and write and chauffeur and clean (only occasionally) and cook and pay bills and walk dogs and so on, I was happy, although the feminist in me revolted a little. I still am, really, unless I think hard about what might have been -- retirement account and professional growth and satisfaction and intellectual stimulation and a savings account with more than $35 in it and an overdraft of only theoretical utility. Then I sometimes feel a little sad.

The past month has simply confirmed my unavailability for work. Starting with my own two-and-a-half week illness, leading on to a five hour battle with MassHealth on the first day I'd begun to feel better, followed by some alarming developments in Benjy's physical and cognitive state last Wednesday, which led to his admission to Mass General on Thursday. He and I spent most of Thursday and half of Friday in the hospital. He underwent an MRI without sedation -- against our wishes -- and it was agonizing for him. I had to insist they stop but was paralyzed myself with anxiety and anguish for the first half hour of the damn thing. (Of course it was a bust; the doctor told us the good news was they'd confirmed he had a brain. That was about it.) He will have to go back this week for another, but will be fast asleep. He had lots of blood work (some thyroid dysfunction) and an EEG (some abnormalities). I hopehopehope the MRI will be okay. He met with three medical teams, each composed of between two and twelve doctors: the general pediatrics team, the neurology team, and the psychiatry team. I am girding myself for a long medical investigation. The word that popped up the most was "complex." Benjy is a complex case.

But here is what I would like to say: This boy was forced to listen to me catalogue his "deficiencies," the ways in which he is broken, again and again to different people. I made sure to throw in the wonderful, wondrous stuff about him whenever I had the chance. He had to endure physical and emotional agony in that MRI machine (and if you aren't familiar with autism spectrum disorders you will need to be told that these kids often have serious sensitivities to noise and other sensory stimuli). I use "agony" without hyperbole and with great sadness. He had to lie still for about half an hour with sensors glued to his scalp and a chaos of wires tethering him to a machine. A bunch of doctors, male and female entered his room without much warning and he was sitting on his bed dressed only in boxers (the johnny was uncomfortable). Toward the end of his ordeal his cheeks were bright pink and he looked like he wanted to curl up and die.

He does not completely understand why all this is happening. The basic knowledge he has lost (of the sort one learns in preschool or kindergarten) does not seem a troubling loss to him, because he knows that Napoleon's last name was Bonaparte, and can spell "world" backwards without thinking about it too much. To him it was a lot of pain, humiliation, and bother for nothing -- a mountain of trouble over a problem the size of a molehill.

And yet. I did not hear one word of reproach. Not one bitter complaint. He never once said, "This is not fair." Or, "Why me?" As always he bore his challenges with grace and courage well beyond his years.

I will do whatever it takes to help him have a fulfilling and, I hope, productive life. I am not ready to throw up my hands and say, "That's Benjy. He has the intelligence of an adult and of a toddler, all mixed in one." It will be a long time before I do that.

The good news is that a whole bunch of super smart doctors are ready to travel this road with us. I asked them point blank: will you just let us go if you can't figure this out today or tomorrow or next week?

They said they wouldn't. They're up for the challenge, and so am I. I just hope Benjy can endure whatever lies before us.

1 comment:

  1. He is such a remarkable, sweet, loving boy. It makes me feel so sad to know all he has to endure.