Friday, August 14, 2009

The Labyrinth

I’ll just introduce this topic, because it’s a tough one to write about. Sometimes I do that with difficult material; just crack the door open a little to see how dark the passage behind is and if anything really scary comes out. 

There are a gang of bad feelings that pick on me when I’m down. They remind me of the bullies I’ve run into in my life - waiting until your alone and down and easy prey and then move in for their sport and amusement. Of that group, anger is probably the one that is least sadistic and the one that’s easiest to open the door to. Sometimes it even feels like a friend; though there’s no happiness in that friendship. 

I’m frequently most angry about my son’s cerebral palsy when the statements and bills and the phone calls come. I  think this is because it’s a lot safer to be mad at money collectors - they don’t evoke much sympathy. 

“Am I late on my payment?” I always remember to ask the various medical billing offices when they call the house. 

“No Sir. You’re not late. This is a courtesy call - just to help you remember that there is a bill outstanding,” is what I’ve heard from several medical establishments - it’s part of a script they’re asked to read I’m sure. 

“So, basically, this is a form of soft harassment,” I’ll say in response. There’s a part of me that knows there’s a person who just needs a job at the other end of the line; but that part of me is easily overridden. Fair or not, I don’t like the job they are doing. 

“No. We don’t harass people Sir. This is a courtesy.”

“Oh,” I’ll say, “So If I ask you to put me on your don’t call list, I can forgo the ‘Courtesy’.

”No Sir.“ 

”So this is harassment?“

”No Sir. I’ve said...” they’ll try to resume the script. 

I never allow myself to get angry at the person themselves; but I’ll express utter outrage at the practice or the bill. I guess there’s a part of me that hopes that the calling staff will pass the word around that I’m a tough nut and will leave me alone. There are some calls I just don’t get anymore so I expect this may be true. 

But behind all this specific outrage at the billing snakes (as I call them), is the more profound root of my anger - my son is not being given a fair shake. And even behind that is my more selfish anger - I’m not getting a fair shake. 

These are the same feelings I remember having when I wasn’t selected for a sports team; or when I received a grade that I thought was unfair; or when I had to accept a correction at work that I did not think was earned - poor me. 

These feelings, of course, as real as they feel, are not helpful. They don’t help me. They don’t help my son. And they imply a singularity to our situation that is not at all real; there are many, many people who have equal and greater disadvantages. And perhaps, worst of all, these feelings leave me prone to a more dangerous emotion - helplessness. 

When it exhibits its darker tendencies, I think of anger as a kind of emotional gateway drug - it opens the door to more dangerous feelings if you overly indulge it. 

And I would be lying if I said that I know the best way to manage my anger. I know that sometimes anger can be a great release and can free me up inside so that I don’t dwell on whatever is fueling it. But it’s a very dangerous feeling to manage and more often than not I feel like a caped matador in the ring, dancing with a deadly beast that could easily overrun or destroy me. 

I don’t expect to come to any conclusions about these feelings in this essay; it’s hard to have perspective on an adversary that you wrestle with frequently. I just want to open the door, just a little, to those passages that don’t get much light. And to hint at the vast labyrinth that lays beyond. I’m not sure I’ll have the courage find or to cast a light on all the places that lay there, but I’ll at least start with the less dangerous corners of that neighborhood.


BLOOM - Parenting Kids With Disabilities said...

Hi David:

All the feelings you describe are so natural and normal, but it doesn't make them any easier. When my son was diagnosed shortly after birth, I hated that I wasn't able to give him a "clean slate" like most kids, that he faced disadvantages from the start. And I hated that instead of just telling people that he arrived, "the good news," I had to "share" the news of his genetic condition, and then deal with how other people reacted, which wasn't always great. And I was determined that no one was going to judge my kid, so I was always on the "look out" to "control" what others thought of him. I thought I could.

As he got older and we realized he had more disabilities than we imagined he would, I used to have very dark times, where I would sit (sometimes in the dark!) and think of all of the things he would never be able to do.

I learned that these times would eventually pass-- usually because I was so involved in caring for Ben that joy would just seep right back into me -- he was such a treasure and delight.

As the years went on, I got good at stopping myself in my tracks if I began the "what ifs" or "if onlys" -- or anything else that took me down a negative path. Eventually I was able to choose not to go there.

Another thing that helped was that someone suggested I think of the image of floating -- the idea that so much pain comes when we are resisting and fighting something that simply "is."

Instead, I would picture myself floating. When you float, you're naturally buoyant and there's no resistance, you simply let go. So when horrible thoughts overwhelmed me, I would stop and simply float. I was letting go, and I wasn't fighting anymore. When Ben sleeps, he often looks to me like he is floating -- he's so relaxed and so peaceful.

And over time, I also came to see that my son -- despite his great challenges -- was capable of such spectacular joy, and of being totally caught up in the moment, and not looking ahead or ruminating about the past. And so I started to see, as I think you mentioned in one of your posts, that I had a lot to learn from him.

And that instead of trying to imagine how it must feel to have multiple disabilities (as an able-bodied person), I had to look to my son, for whom this was a given fact. And that "different" was not "lesser than" -- despite the predominant values of our culture. And I also gained a new perspective on how miraculous typical development is, how effortless, and how much I had taken for granted everything I had been given and never recognized. And how, when I really thought about it, I was humbled by my son, and his immense courage to persist when so many things were so difficult and so frustrating for him. So unfair. I didn't know how he did it.

But I digress.

Sometimes you have to just let yourself go through those dark times, knowing they will ebb, and that over time you'll begin to almost predict them and have some perspective -- "Oh, it's YOU again!"

The love you have for your son is so palpable in all of your posts. Everything is more intense in special-needs parenting, I find. The highs and the lows.

Cheers, Louise, mom to Ben

David Sexton said...

To Louise, mom to Ben:

Thanks Louise. I just read your comment and wanted to thank you for your kind words.

It's comforting to hear those words from another parent. Your son Ben sounds wonderful.