Thursday, June 5, 2008
It's been about 23 years since being diagnosed with Post Traumatic Stress Disorder. Since then I have learned a lot about it. I'm no expert on how it effects everybody, but I know how it effects me very well, and I am an expert on managing my own case.
Various components of the disorder, or syndrome, that I have lately needed to take into account: panic attacks, delayed stress problems, depression due to grief, and chronic functional problems.
Panic attacks are managed by education. You learn what they are, and then you can go through them with less fear. The less afraid you are when a panic attack starts the less severe it will be.
Delayed stress problems include but aren't limited to flashbacks. I deal with them by not burying my memories. People who advise "put the past behind you" give crappy advice. You have to explore the past and face it to free yourself from it. I can avoid some situations that trigger flashbacks, but need to keep such avoidance to a minimum, recognizing the collateral costs.
Depression due to grief is not talked about much but it's a major issue for people like me who experienced long term repeated trauma. There is an awareness of loss that can't be ignored. It's mostly a sense of lost feeling. For so many years I didn't dare feel what was around me, because I was over-sensitized. It left much of my life flat, colorless, and tasteless to me. This takes grief management.
The chronic functional problems are something else. Long-term repeated trauma causes neurological and chemical changes that are not completely understood (Wikipedia has a summary here), but cause definite behavioral changes that have to be taken into account.
Typical are disturbances in fear reactions. The public stereotype of a PTSD sufferer is of someone who is too fearful. But the disorder often goes the other way. Many times I have not had a fear reaction that I should have, and put myself or others in danger. This is why I haven't driven a car since 1987.
Another problem I have that I suspect is a chronic functional disorder, is harder to describe. It's a kind of brittleness. I need to ease into things. I can't be blind-sided. To see how it works I have to give examples.
Last year a friend of Anitra and I showed up at the Real Change office on a Saturday when I was working the desk, just minutes before closing time, and invited us to join her as her guest that night at a special community meal in her building. I had planned to go home after closing and cook a dinner. The plan was detailed. I knew what I was going to cook. But Anitra wanted to go to the community meal and I agreed.
I know from experience that if I had one or two days to prepare myself for the community meal I could have gone through with it. Or, I could have gone through with it if the meal event was less stressful than it turned out. But what happened was, we got to her building and found ourselves waiting in line for entrance into the dining area, and Anitra left me to go look for our friend. It was crowded, the other people in line were loud incessant talkers, and I had a severe panic attack on the spot. When Anitra came back I begged off, ran home and collapsed in bed in tears, hating myself for being a freak.
I simply shouldn't have agreed to the sudden change of plans. I knew better, but I thought I could get away with it just this once, and went along to avoid being a pain.
Yesterday there was another incident here at my building, the Union. Over a month ago I had signed up for a nutritional class. According to the sign-up sheet it was scheduled yesterday, a Wednesday, at 2 PM. It happens that's also the day of the week we have a community dinner at the Union, at 5 PM, but in the past when we've had nutritional classes there was food at the end of the class, so I didn't think I would mind missing the dinner. That was just what I planned to do; I would use the meal-time to do my usual afternoon errands, including my stop at the office to feed the cat.
A couple of weeks ago the plan was solidified when a sign reminding us all of the class was posted, and it specifically promised pizza. The staff added that it would not be just any pizza, it would be pizza we ourselves made during the class. Now there wasn't any doubt that I would get something to eat at the class, and wouldn't mind missing the dinner.
This is the Union, though. It's run by the Downtown Emergency Service Center. So yesterday morning I went to the front desk to make sure everything was going as planned.
I was told that the times hadn't changed. The class would be at 2 PM. the dinner would be at 5 PM. Then I noticed a sign for the dinner saying that pizza would be served. I said, "That's odd. Why would you have pizza for dinner, knowing that the people who attended the class would have already had pizza?"
The answer was, "Oh, the people who go to the class will make the pizza that's served at the dinner. There won't be pizza at the class itself, you'll get it at 5 PM."
Well, screw me and my stupid plans.
In the weeks leading up to the class I had come to look forward to it. I didn't so much care about what I might learn about nutrition, I was looking forward to the shared communal experience. Now I found out that the complete experience, including the shared eating, would drag out over 3 and a half hours, and I had other things I had planned to do during that time.
Here's where the PTSD kicks in: I had prepared for the whole thing, the making of the pizza and the eating of it. In my brittleness, I couldn't deal with dividing the experience in half. I couldn't go to the class and enjoy making the pizza, knowing that I was being screwed out of partaking in it, if I wouldn't be at the dinner. I couldn't go to the dinner and enjoy the pizza, knowing that I was screwed out of the joy of helping make it, if I hadn't been to the class. I couldn't do both the class and the dinner and enjoy them, knowing the whole time that I was abandoning my usual afternoon routine, and knowing that I had been misled for two weeks about the class.
So I decided to bag both of them. Right after making that decision, Adam, our Editorial Manager, asked if I could come in to see some public disclosure documents he got hold of. I promised to arrive by 4 PM.
As I was leaving the Union around 3 to do errands on the way to that 4 PM meeting, I expected to see the class either in progress or wrapping up. It wasn't. I found out that the class hadn't happened yet. It was going to happen at 4 PM.
If I had known that the class was going to be at 4 PM I could have done my afternoon routine early and got back in time for both the class and the dinner.
I was livid. Twice in one day, I found out in two different ways that I had been misled. I pointed this out to our building manager. I told him I signed up for this event a month ago and the Union and the class provider had a month to get me the right information, and the best they can do is tell me one hour before it's going to happen?
I was more livid by his reaction. "You can still go to the class," he said.
"No, I can't. I keep my promises. I have an appointment at 4."
That was it. "Oh well." No apology for jerking me around feeding me BS for a month. No apology for taking my time for granted, and assuming that I have no life but the life that is patronizingly doled out to me by him and DESC through their events.
And I'm sure neither the building manager nor DESC will ever acknowledge that they are clueless about the special needs of their residents with PTSD.
The following closing rant is therefore directed to DESC:
Hello. Get this straight. I don't have borderline personality disorder. I make friends well. I'm not psychotic. I have excellent reality judgment. I'm not even especially neurotic.
I have PTSD. Look it up. It means I've been abused too much. You don't accommodate it by "drawing me out" into the community. I'm past that stage. I can find community myself, assholes. That's not my problem. Stop confusing me with the other mental patients who live here. It's your job to know the differences.
You accommodate the disorder by just not heaping more abuse on me. Don't feed me bullshit, apologize to me if and when you do, and keep the noise down in the next room, and I'll be just fine.