So it seems...

Last Friday I had a first meeting with a psychological person a wee way away from my home. I had prepared - as I now know I need to - by finding where they were, printing out a map, and driving up just a wee bit early. I couldn't find them. The map was wrong. I searched on my phone and eventually did find them, 10 minutes late. Maybe, I convinced myself, that I had gotten myself lost; I truly believed that a psychological person wouldn't believe me.

Dr J is very good. She seemed to pick up a lot of my problems with my verbal issues with my language. I also forgot lots, tried to remember things, told her when I did. Didn't sound too good. She listened, she took notes, I cried, I stopped, I tried to talk. Finally she asked me if I had ever had a neuropsychological assessment. No, I hadn't. I remembered my visit to the brain aneurysm team at some stage after the surgery, but I couldn't say when it was. I think it was sometime before I got released, and resulted in a report send back to BIRU for my release. Dr J asked if I could remember the names of the people who were presently treating me, and she would contact one for some info about neuropsychological assessment.

Later that afternoon, on the train into town, I got a phone call from my social worker, Lilly. Seems she had received a call from Dr J, who talked with her about neuropsychological assessment for me. That was only a part of her discussion with me. It seems that next week is my last week with CBRT. The first time they had told me. I felt my tears coming back, but I had to try to hold them in because the train is not, for me, private.

Lilly, I know, is a wonderful person to work with me. Next week I will meet up with her a couple of days before the final event, and talk with her about neuropsychological assessment. Today I had read a Brainline article by Kara Swanson on October 27, 2011. Three years before our approaching Halloween. Kara came across as so much like I now feel.

Traumatic brain injury is the most clever of masks. It parades us out there as normal people. Many of us look no different than we did before we were hurt. We keep hearing, “You look great!” But it hides a darker reality.

Oh yes, this is so much me. This "mask", which I seem to wear most days and which was a result of my brain aneurysm and stroke, led to quite a bit of pathology at both PA and CBRT, and has now ended up, a week before my last CBRT, with a visit to a psychological person.

On the train, talking to Lilly, was a bad episode. She asked me how I would feel next week. I told her how I had coped with the wonderful people who had worked with me, and how I would go downhill when they left. This is the "usual" treatment to health patients. They don't choose this, it's part of the overall health system. Perhaps some people are easy. Others, like me, are not.

Today I looked in the UQ website and found some literature about neuropsychological assessment. It said:

Neuropsychological assessments are requested to help understand how the different areas and systems of the brain are working. Testing is usually recommended when there are symptoms or problems with memory or thinking. This may be because a person has a change in their concentration, organisation, reasoning, memory, language, perception, coordination or personality. These changes may be due to a number of causes (medical, genetic, psychological).

Certainly sounds good, but they charge. Someone, like me, is on a DSP. I can't afford to pay for those at UQ. I also found Advanced Neuropsychological Treatment Service (ANTS), which said:

A neuropsychological assessment conducted by a specialist clinical neuropsychologist can inform a new or corrected diagnosis, which can in turn shape the development of an appropriate treatment program. Significant resources can be saved with a correct diagnosis and appropriate treatment program. 

"Appropriate treatment program"? Perhaps I am way off the road, but any "appropriate treatment program" seems to be costly unless someone has money.

When I woke up in PA after my surgery, and at some time in the future I found out I'd had a stroke, I was never told why a stroke could happen exactly at my surgery. It's funny, isn't it? Happened at my surgery? Is this the revealing of what actually happened? Was it really a stroke or was it caused by the surgery? Does PA know? Do my PA and CBRT pathology teams know? How am I supposed to know about it?

So this is leading back to my phone talk with Lilly. Ever since Centrelink gave me DSP I don't - can't - feel hopeful. I don't have any real idea about how long they will keep me on DSP, how old I will get, if I can ever find a job. If I am required to. Lilly gave it all to me. I will, because I have real problems, it seems stay on DSP until I am 65, then transferred to superannuation.

So, it seems, I am now exactly retired. I hope everyone else enjoys their retirement. I think I am having to plan ahead.