Monday, January 11, 2010

We Don't Talk Much About It

Yesterday in church, with the Sacrament passed and Michael Jr. looking for a seat with us, I scooped up Josh and made room. He sat down and almost immediately had his fingers to his mouth. I pulled his hands away and hissed “Stop it!” but it was no use. No one (outside of those who also suffer from this) can have any concept of how badly his fingers itch. They are cracked, peeling, and scabbed. They break my heart.

Michael has atopic eczema and it’s left his fingers shredded. Itchy, vesicles (little blisters) erupt, he can’t keep from scratching and the result is bandage covered fingers most of the time. We’ve tried a few different ointments his doctor has prescribed but the results haven’t been impressive. It’s sort of sad and frustrating.

The eczema is something we’ve been struggling with since Michael was just a baby. I remember bringing him to the pediatrician in Cambridge, MA and placing him on the exam table. He proceeded to scratch his chest till it bled.

Michael, a usually reserved, private sort of kid, gave me permission to write about him. I was a little surprised because it’s very unlike him. He doesn’t like it when I post photos of him or his artwork on Facebook and just about lost his mind when I posted a video of him playing the piano. The weird part of all of this is that he’s concerned people will make fun of him. *sighs* He really has no idea.

Unfortunately, Michael’s struggles aren’t limited to angry skin. What’s on the outside is tough enough but it’s nothing compared to what’s going on inside. It’s something we don’t talk much about outside these four walls but it weighs heavily on our hearts and minds.

For almost as long as I’ve known my son I’ve known that there was something different about him. He had an immediate, almost pathological dislike of strangers. It was the sort of thing that makes a young mother question what she’s doing. Why was he so fearful? I scolded and I admonished and tried everything I could think of to make him behave. To make him nice. There was just so much I didn’t understand.

Eventually the panic attacks began. At first I thought he was being silly, ridiculous even. Completely exasperating. Then I did some research. Panic attacks are episodes of intense fear and/or discomfort and are accompanied by 4 out of 13 bodily or cognitive symptoms (such as headaches, nausea, sweating, shortness of breath, difficulty concentrating, muscle tension, and difficulty sleeping), regularly manifesting with an intense desire to escape, feeling of dread and impending danger. Reading through the 13 symptoms I found that Michael was experiencing every single one of them.

What I’ve read suggests that the attacks aren’t brought on by a fear of a particular thing (a phobia) or caused by a traumatic event. They may begin with one but often there is none to point to. It seems to be hereditary but causes are uncertain. Cognitive therapy is the generally accepted course of action but he isn’t going for it yet. In the mean time he and I are both reading Hope and Help for Your Nerves by Claire Weekes and it seems to work under the same assumptions. Although it’s an old book and employs terms we don’t use much anymore, the information is really helpful. She explains what’s happening, physiologically speaking, and writes about how a person can move through the attacks in such a way as to end the cycle.

So. Why write about this? Lots of reasons I guess but mainly because, like I’ve mentioned a number of times before, this is my journal. Something that will eventually be left behind for my family. Teenagers are tough and it may take a long time for this one to really understand how loved he is and how much we actually do understand. We haven’t had to walk the proverbial mile in his shoes but we get that it’s extremely difficult. He’s done so many things that most folks probably view as completely run of the mill. Things that have been anything but for him. He is terrified of the dark (a textbook symptom) yet he camps with the Scouts. He’s petrified of performing in front of large groups but has performed at piano recitals and spoken in church. I can’t imagine how difficult it is to manage the expectations that he should be like all the other boys. The hard work involved in appearing “normal”. As normal as possible, I guess. I want him to understand that we can get through this; that panic and anxiety aren’t what life is all about. That life’s worth living.

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