Post 8: On Anger

Me, sometimes

On Anger

“If I were you I think I would be angry all the time.” Many people have said some version of this to me. But I’m not. You probably wouldn’t be either, when it came down to it.

I certainly feel angry from time to time. My anger usually manifests as frustration over losses of independence and communication. My therapist says anger is a form of grief, and that it needs an outlet lest it get all twisted and knotted up inside. She recommends screaming. This goes to show toddlers have it right: get angry, scream and tantrum for minutes or hours , move on happily with their business, repeat. My therapist uses the weather metaphor: I am the sky, and hard emotions are but passing rain, lightning, cyclones, etc. Anger feels more like hidden land mines beneath my desert of a body. They are set off by a battle with a tiny zipper here, a person complaining about something I would give anything to do there, FDA regulations everywhere.

I believe anger and other so-called “negative” emotions can be used as fuel for positive change. But with ALS I feel stuck, the fuel non-transformative, at least how I would like it to be. I channel my anger into advocacy for new legislation, writing, catty tweets towards a behemoth ALS organization that is failing its patients, and screaming. This all helps. But where I really want to put my anger to work is to beat this damn disease, only it is currently unbeatable. And I am most angry about that. Still, I have hope, which alongside gratitude is a powerful mitigator of anger.

All that being said, I do not dwell or exist in a state of anger. What would that even look like? I suppose I would shut myself off from family and friends, turning into a recluse. But I love socializing and attention far too much. Maybe I would shout things like Why me?! and throw wine glasses at the wall. But then think of the sweeping and being paranoid for weeks about overlooked shards and subsequent blood cleanup. I guess I would mainly be very bitter and curt with everyone, tossing around passive(?) aggressions like “oh you had to wait in line for 10 minutes? It must be dreadful to be able to stand and walk on your own for that long. Can I draw you a bath?” None of these lifestyles appeal to me. Besides, it is literally impossible to be angry all the time when I am surrounded by so much love, help, and hilarity. Whether I have 6 months to live, or 2 years, I want to spend it being happy. Well those last two sentences are soggy from sap, aren’t they. I can’t help it though, because it’s true.

I know people with ALS who are you angry all the time. I get it and it’s a perfectly valid response to an insidious disease. We could use more anger towards ALS. Collective, targeted anger can produce change. A neurologist once told me that ALS is sometimes called “the nice person’s disease” because patients, by and large, are incredibly nice. Many patients become perfect pictures of acceptance and stoic bravery, silently suffering. This may be inspiring, but it doesn’t stoke the flames of urgency for treatments and a cure. In the 80s the eventual treatments that made HIV a chronic condition rather than a death sentence were brought about by angry, fired up advocates who refused to accept the situation as-is. Currently, an ALS patient today faces nearly the same prognosis that Lou Gehrig did in 1939. There are only two FDA approved treatments, and they extend your life by a few months.

The ALS movement needs more anger and less nice, serene dying people.

If you are angry about ALS too, I urge you to get involved by contacting your representative here or donating to I Am ALS here. They are at the forefront of kicking ALS.