I do get nice letters, but where did anyone out there in MS-land come up with idea that I am well adjusted, that I handle our shared life of debilitating chronic illness with grace and dignity? I don’t think so. Write a book, and folks believe you have your act together. That is magical thinking. The truth is, I am pissed. Brittle? How about volatile?
I am an angry person. The emotion lies dormant most of the time but can be set off in the frustration of any moment. When I try and fail at life’s little tasks, tying a shoe, buttoning a shirt, the mushroom cloud appears out of nowhere. It is the small stuff that gets me.
A line has been crossed as this progressive disease progresses. I feel so defined by what I no longer can do. My dependence on others gets to me constantly. It wears at my sense of self. I gaze at the mirror and see such weakness. The falls come regularly, in the street or onto the floor of my choice. There is no early warning system.
Mishaps bring a self-loathing that can neither be denied nor explained. High emotion is directed inward, inexplicably taking aim at my heart. Sickness settles in, and fallout turns inward. I am a walking, rather a stumbling implosion. When the fuse burns, I seem unable to douse the flame. It is as if I am responsible for my crumbling health.
When Meredith comments on my anger, she calmly says it upsets everyone in the family. The family Diaspora began years ago. Our children live in Shanghai, Spokane, Chicago, safely out of range of the emotional shrapnel. A few years ago, I put our now twenty-one year old daughter, Lily, on the witness stand. She did not blink. “It is not pleasant being around your anger, hearing you yelling.” Does it hurt the family? Lily paused. “Well it doesn’t help,” she answered, pulling her punches a bit.
I have distinguished between blasting those around me and firing into the air. I still believe anger is a valid coping mechanism if it is a victimless crime. There may be no such thing. Lily told me that just because anger is not directed at her does not mean it does not get to her. Anger directed at no one else should not hurt. I have believed that, though perhaps that is only a cop-out.
I figure lashing out at myself is nobody’s business. Good luck with that one. Letting out anger can get rid of a lot of pressure. It also can be self-indulgent if not damaging to others. Illness is a family affair, so I have to think carefully about everyone under our roof.
At the same time, I think we need to give each other space. If you have a serious sickness, maybe it is occasionally okay to react. Let go of your emotions, fire at will, but maybe wait until you are alone. Then run around the house screaming. Of course, the neighbors will hear and have you locked up.
Do you get it? I am not a perfect person.
In the end, bottling up feelings is not a fabulous strategy. I do not intend to go postal. If there is a bubble under the rug, sooner or later it will pop up. Anger is a part of life. Anger also is an expression of the defiance I feel toward my pig of a disease. I will not go gently into that good night. Dylan Thomas’s formula for dying is mine for living.