Thursday, October 13, 2011

Memories of last year

Yesterday was my mom's birthday. That means last year around this time I went out with my family to celebrate and my daughter brought her boyfriend. I don't remember the dinner. I sort of remember the walk home because for some reason we were discussing Sherri Lewis's puppet, Lambchop, and imagining her as a zombie. The next day I posted an altered picture I created on Photoshop of Lambchop with blood running down her mouth (mutton chops?) and with a brain in her hand.

My sister found it disturbing. My situation at work was deteriorating. My chances of a fresh start with the new principal seemed doomed. I was losing a sense of purpose, a feeling of having any significance, and  any remote chances of belonging. I began losing control of myself. I was so sad. I felt misunderstood. After fighting for three years to do what I had done so well for the 18 years before my surgery, I wanted to give up. I hated myself for admitting defeat.

In the New York Times last week, there was an opinion piece called Starting Again After Brain Injury. The author writes:

I broke my leg last year, and it took me and my physical therapist a week to realize it, because my broken leg was unremarkable compared to my chronic neuropathic pain. Then, it was spooky how much more attention my cast and crutches elicited from both strangers and doctors than my broken brain does, even though my invisible cerebral disabilities cause more pain.
It is no wonder suicide remains a significant cause of death among people with a traumatic brain injury diagnosis. My speech language pathologist tells me I am a “survivor.” I tell him I do not feel like a survivor, I feel like someone who is still fighting for her life. I am afraid of what will happen to me. I don’t say that because I’m suicidal, but because I can’t keep living the way I am now. 

I got sick, got sicker, and then ended up in the hospital. The plan was when I got out, I was supposed to  "phone it in" at work. In other words, do as I am told at work without thinking, just show up and be of service. The day after agreeing to "the plan," I forgot what it was and felt complete panic. When reminded what we had discussed, it was alarming that I had completely forgotten what I had decided to do. Needless to say, I could not do it. The most disturbing part of this story is not my vocational demise, it is the recognition of one of the most puzzling aspects of my brain injury.

I never really heard the phrase "executive functions" before my brain injury. The ability to forward think or plan is an executive function. So remembering what I need to do before I leave the house has become a struggle. It is so hard to wrap my brain around the fact that there are functions of the brain so obvious that we take them for granted and yet so complicated that we can lose them.

What needs to be done today before I leave the house? The first things that come to mind are things that sometimes need to be done, like laundry. Does that need to be done today? Is that related to why I am leaving the house? No, but that is the type of thing that I feel secure doing because it seems practical and somehow, essential. 

When it is actually time to leave is when the many tasks that needed to be done randomly and inconsistently occur to me. My fanny pack is always packed with phone, wallet, and keys so I have that piece covered. I have gone to the bank without the checks I need to deposit, the post office with the package I need to mail, and the pharmacy with the prescription I need to get filled. I have also left myself so little time that I am forced to leave the house without eating, showering, brushing my teeth, or dressing in appropriate clothes for the weather. None of that seems devastating by itself. Those things happen to everyone. What disturbs me is the fact that the part of my brain that is supposed to take care of that for me is damaged.

I am determined to implement systems (like my fanny pack) to make sure I do the necessary tasks and carry the important items with me, even though my brain does not remember how to plan. When I have to pack a suitcase for a place I have never been before, I am fortunate enough to have a loving husband who holds a checklist while I pack and does not let me stop until I am done. 

I think I am going to be okay. I just have to remember tomorrow that I felt this way today.

Tuesday, October 4, 2011

The Dream Brain Injury Support Group

If I was going to start a support group for people with brain injuries, this is what it might look like. Using the model of the Responsive Classroom, my goal would be to create a psychologically comfortable environment where everyone present feels significant, important, and included. We could start with a question or poll of the month posted on a board so everyone signs in when they arrive. For example: What was your biggest obstacle this month? or What did you do in the last week (or today since we have memory problems) that makes you feel most proud?

Name tags would ready and there would be some blanks for new people. There would be a growing face book poster or wall with first names and photos so everyone would have a fighting chance to remember each other's names. I would give everyone five minutes to say hello to each other and settle in before beginning the formal part of the meeting.

If we had a topic, I (or more likely a facilitator because I am not great with time, taking turns, or staying on topic) would ask the folks to turn to a partner and discuss. Then after a few minutes, each person would share what the other person said. That way we could all practice listening to each other and remembering what the other person said.

We would play games where everyone could participate. The games could help us build cognitive or social skills. Maybe someone would be "the expert of the month" and share a useful article, resource, or strategy she discovered. Maybe we could do some simple crafts.

We would work on problem solving skills to bring back home with us when we leave. We would learn relaxation techniques or simple stretches and practice them.

These are just some ideas I am playing around with right now. We have slim pickings her in New York City. I know it seems bizarre. Since we have such a huge population, you would think there would be more available. There are certainly enough folks out there with brain injuries.

How many TBIs does it take to start a support group?