Saturday, April 27, 2013

How The Hell Am I Going To Write This Post?

This one will require bullets (of the punctuational kind, of course). Words like these hurt less when they are orderly and tight and less like a flood surge than they would like to be.**

** So much for the orderly and tight bullets.


  • Was doing so much better emotionally until last Tuesday. But his cognitive and memory losses continue, maybe worsen.
  • Engaged me in a (slightly confused) conversation about the ugly Westboro Baptist Church, Louis Theroux, and freedom of speech in America and Germany, on our Monday ride to MGH. Almost like the old Benjy.
  •  Tuesday he could not lift his head and face the world. Wild despair all day long. A few tepid upward swings to a place of resignation.
  • Tuesday evening Lars and I took him (yet again) to MGH, where he was presented to the monthly neurology conference because he is an "interesting" (and perplexing) case. We hoped this would get him some help.
  • Tuesday evening a twelve-year-old boy (thirteen in a little over a week!) became a profile in courage. He allowed himself to be made vulnerable in front of a room full of neurologists he did not know (except for one). It was excruciating for me to watch. I can only imagine how it felt to him, because his brain no longer works the way it should and he knows this. So did everyone in that room.
  •  Wednesday the despair waxed large and thick and deep. All week school was an agony. And why wouldn't it be?
  • Thursday morning he could not name the furniture in his bedroom. I asked him to get something off his night table, and he asked if that was the thing with his computer on it. When I said that was his desk, he wondered if the night table, then, was that thing with all the drawers. I informed him that was his dresser, and he could not invoke the process of elimination to identify his night table so I had to describe its color and what sat upon its surface. Then he knew.
  • Thursday after school he told me he does not want to live the life he is living. That he does not want to live in this world at all. I have heard this many times before, but not in the past eighteen months. I am afraid to kill myself, he confessed, but I want a break from this life.
  • Thursday evening he asked to go back to the hospital. I called his psychiatrist and she deferred to my judgment. I am an old pro at this now, and know when he needs it and just how to make it happen. We decided to give it another day and then make a decision.
  • Thursday evening his neurologist called to discuss the findings of the conference. They are certain he does not have a degenerative brain disease. Non of those prion horrors I urged you not to Google in a recent post. Thank. You. World.
  • However, here is what they think. My boy is so very mentally ill -- there is so MUCH dysfunction for his poor brain to deal with, that his brain is partially shutting down. Sort of a short-circuiting kind of thing. Because who has room for memory and word recall and other basic cognitive functions when they are swollen to bursting with anxiety and despair and mania and psychosis and all those other rogue impulses?
  • I did not tell Benjy this. I told some other people. And like I do all the time now (see below), I wept.
  • Friday morning the sun rose intensely. Benjy faced it. He sat in front of his SAD light and ate his waffle and got himself together (with a lot of help from me) and grabbed his tennis racket and went off to school. Small step, huge triumph
  • Friday afternoon he came home from school and did not collapse. He had an invitation from a friend for Saturday. He had something to look forward to.
  • Friday evening the MOST ASTONISHING THING happened. His sweet friend, L (another Aspie, but FAR less impaired than Benjy and a public school student here in town) invited Benjy to attend the middle school dance with him. Ben called me up to his room and informed me he was going.
  • My heart stopped. I think you will know why.
  • Um, I said, do you really think this is a good idea? There will be loud music. Flashing lights. Darkness and crowds and probably some mean kids and possibly some illicit behaviors. (And so much worse, I was convinced.)
  • I texted Saskia, who was at a party. "He's going to the dance with L!!!! I can't dissuade him!!!!"
  • Saskia texted back. "That will not end well. I could barely function at those things. If I come home and hang out with him will he change his mind?"
  • He would not. I was beyond terrified, If you have read this blog for a while you will know why. But he wanted the chance to be regular kid for once, and I had to let him do it.
  • Saskia instructed me on how he should dress. "Do NOT dress him up!" (Duh.) Make sure his pants fit. Clean shirt. Deodorant. Do we have any cologne?"
  • Oh, Geez.
  • "OK then, use a little of Dad's aftershave. Just a little."
  • That made me laugh. When I suggested it to Ben he was afraid it might poison him if he licked his cheek. I assured him it wouldn't. I couldn't find it anyway (Lars? Where the heck do you KEEP that stuff?) and his Axe deodorant (which he NEVER wears as far as I can tell) made him smell good.
  • He asked me if we could buy an Orabrush so he could brush his tongue and avoid bad breath. "90% of bad-breath germs are located on the tongue" he told me.
  • Oh, Geez.
  • And then, Readers, after making sure he looked fine, and picking up Saskia and her best friend so THEY could check him out and also instruct him on what to do and what not to do, Lars and I picked up his friend L and drove the two of them to the dance. He stared at the giggling, joking, CONFIDENT middle school girls infesting the front of the school and took on a decided deer-in-headlights look. Then he drew a deep breath and followed L out of the car.
  • "Drive away, Lars," I said. "Quick. And don't look." I simply could not watch him walk into that school, my beautiful boy with his over-medicated gait, his glazed but lovely green eyes.
  • He lasted an hour. YES!!!! And it was fine, apparently. Then he and L went back to L's house and killed zombies (virtually, folks, virtually) for another hour.
  • Everyone went to bed happy. It has been a loooong time since that has happened.

Your patience is wearing thin so I'll make this short.

  • Sick on and off since November.
  • Really REALLY sick starting last Friday. Severe musculo-skeletal pain, insomnia (up for good every night until Tuesday night by 3 a.m. because it just hurt too damn much to lie in my bed), headache, fiery (but not swollen) glands, fatigue, unsteadiness. 
  • Monday I went to the doctor. "Yep," she said, "something is not right here." She ordered a battery of blood tests.
  • I spent WAAAY too much time on WebMD.
  • Diagnosed myself with either fibromyalgia, MS, Sjogren's disorder or some other autoimmune disease. And in my darkest moments, the cancer I have feared ever since my sister died of it in 1996.
  • Tuesday I developed some scary neurological symptoms. Scary.
  • Learned I do not have cancer but I do have a serious vitamin B12 deficiency. Believe it or not that can make you REALLY sick. Luckily mine was caught before my face was paralyzed. I am not joking.
  • Started high-dose supplements. Slept through the night Tuesday.
  • Feeling MUCH better as I write this.
  • But Readers, I learned that B12 deficiency can cause depression and personality changes. i think the entire world but me had noticed I was depressed and bitchy (not my usual way of being). I realized I WAS depressed and bitchy when started crying three or four times a day, and when I thought back to my interactions with people over the past month.
  • (Thank god I still have friends.)
And now, Readers, I have to work on me as well as Benjy.  I am learning how to take care of myself. It's not easy for me. The hardest thing about this life we are living is that we do not know, from one day to the next, what is going to happen. From one HOUR to the next sometimes. But I finally emerged from my hole and told my friends what's been happening over the past weeks, and my friends are coming to the rescue.

We may not have much money (understatement of the year) or luck (bigger understatement), but we super-rich in family and friends. We are the one-percent in that most important area...and I would not trade that for anything.

The only trade I would make is for my son. For his happiness and health, for the gift of not having to simply agree with him when he tells me life is not fair, for a break from the anguish of watching my child suffer (and for a break for HIM from that suffering) I would trade almost anything. My left hand (that's the important one). My eyes. My legs. Whatever.

But today is another sunny day. L is coming here to hang with Benjy today, and later we are going to my brother and sister-in-law's for a cookout. So it is shaping up to be a good one.


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