All In My Head

I've been having an interesting time with brain rehabilitation... I was going to say "lately," but it always has been of vital interest to me, considering it's my life I'm talking about here.
Tonight when I arrived at the Neuropsychologist's Tuesday night Traumatic Brain Injury Education/Support Group, I found myself sitting alone across the table from him because none of the other group members wanted to brave the weather.
Well, technically one of them left a message stating that he'd had a bad couple of days and now couldn't actually locate his car keys at all, let alone drive over.
I took this as an excellent opportunity to pick the good doctor's brains for items not seeming to connect as my neurons attempt to fire.
The Brain Rehab people have begun to flip-flop a little in their services. They've done an amazing job helping me with my speech and language/cognitive coping skills and accommodations, so much so that I will be done with that portion of my therapy by the end of next week. And I've been out of physical therapy for about three months now.
Every three months they hold a "family conference" that includes all the therapists, the psychiatrist, care coordinator, any social workers or counselors involved, and of course any of my family members who care to be there as well. These meetings are an exercise in frustration for me, because I keep hitting up against this wall that I've been trying to get a feel for. I don't know how high or how long it is, and I'm not sure if I'm going to find what I'm expecting behind it.
Basically, each member of the staff gives a summary of their area of therapy and what my goals are in that therapy. They all smile at me at once as the person who has the floor says, condescendingly, "You are working on re-training your eyes to converge and diverge more effectively..." Then they spell out what progress I've made and what the game plan is, just exactly as if we haven't been talking about these things individually for the past nine months since the accident. I know what I'm working on, and I know what I'm working toward. What I want to know is how they intend to get me there -- not by each individual skill set, but in terms of The Big Picture.
Now, in their defense, I know they can't predict with 100% accuracy how far I will progress, nor in what amount of time. The reason they provide all that basic information in the meeting is to help outside people (counselor, sister, etc) to understand what I'm working on and how I'm doing, and they can't very well ignore my presence and address my sister instead of me. I get all that, but my sister already knows all that coming into every meeting. What she wants to know is:

1. How are they going to transfer me back into the regular work world? I'm doing volunteering at
   
   the school two mornings a week, and it's causing headaches and dizziness. I asked the vocational therapist what to make of it, and she suggested I keep a journal of all the details surrounding these symptoms so that we can adjust my environment as much as possible and get a realistic idea of how much of what I can tolerate. Then I do a part time job, and then I go back to the real world and work a job...except that she has no idea what a good job for me to go into would be because she's not a certified English teacher, and neither is she me. 
2. Is there a specific end goal that I'm working toward, and what is it? Can I go back to teaching? How? How do all these therapies lead up to getting my life back on track?
3. Why can't they approach the insurance company more proactively as opposed to reactively? They get me all worked up and concerned about what the insurance company might do, and so far none of their dire predictions has taken place. It seems very unprofessional.
4. When I asked about counseling with an expert on PTSD for my car accident dreams and terrible fear if the car happens to move the wrong way while I'm in it, why did they look and smile at each other as if mentally shaking their heads at me? 
5. Why did the care coordinator tell me privately that, although I deserve to have all the therapies my neuropsychologist recommended, I should probably not pursue it (again with the insurance company in mind)?
6. Why aren't they organized enough to find out our concerns and address them directly as things progress? They remind me of driving with an adult as you're getting your license: They've done these meetings and worked on these kinds of cases so much over the years that they don't even think to explain some of the things that they know automatically. They just assume we will know. They asked us if we had any questions and, when we didn't, they all smiled across the table at one another and shook their heads, which gave us the impression that no one else ever  asks questions at that point. My sister and I decided to write them down next time, and to call or email the therapists in charge of each of them.
7. Why are they completely ignoring my brain-hand coordination and communication issues, and faulty fine motor skills in my right hand? I will bring it up the occupational therapy for that and they blow it off and tell me it's not going to help me. Fine if it won't, but don't I have a right to have it addressed elsewhere, then? Maybe I should start looking...

Anyway, all this hanging  in the balance and I find myself getting a two hour one-on-one with my trusty advocate, so naturally I settled in and started asking questions.

The doctor was very disappointed in their approach, but told me that they've been burned by both the insurance companies and lawyers quite a bit over the years, and things are getting harder and harder to get covered all the time. This tightening of the fist has squeezed out some of their enthusiasm quite a bit, and naturally so, but he will continue to insist that this isn't good enough.

"Why should you be punished for being smarter than many of the rest? You deserve the same amount of treatment as anyone else whose sustained a 47 point drop in their IQ. It should not matter that you were well above the average to begin with. Just because you're now average because of the car accident doesn't mean that it's good enough for you and what you are used to being able to do. You shouldn't have to beg for treatment that they're supposed to be giving you anyway. Let's get to work here and start talking about a game plan for you. They're good people at the brain rehab, but sometimes they need to get a little nudge. You hit a plateau and they consider you done, and of course we're glad they've helped you make so much progress, but now there's nothing wrong with you casting out a bigger net and handling these other issues.They've become more noticeable as you've eliminated the most debilitating of the symptoms, but that leaves time and room to work on the remaining symptoms."

I got out a sheet of paper on which I'd written all my questions and a pen in order to record all the answers as he gave them to me. It's a lot harder for me to take notes than it used to be. I used to be very well organized from thought to paper, but this may be something I can get back again over time. It's in my head somewhere; I just need a little more assistance in teasing it out. Here's the feedback he gave me:

Regarding My Volunteer Work

• I will need to record a list of symptoms and environmental triggers that may be causing them, and I will need to continue working at the school until I've got enough data to examine for a solution.
• I shouldn't be doing any one task for more than an hour at a time. 
• Two hours on the copy machine were bad for me because of the constant noise, reading directions and working out how to follow them, looking down and then up again as I did so. My eyes do not look back and forth from one job to another now without having focusing issues. This action repeated over a two hour time span brings on neural fatigue. 
• The doctor is going to dash off a note to the vocational therapist to suggest that I need to be in a well-organized classroom in which I can follow the same daily routine.
• For my part, I need to pay close attention to my symptoms and remind myself that if I overdo it my brain will quit on me, and he doesn't want me to set myself up for failure. And for mercy's sake don't try to push through if I am experiencing symptoms too strongly. If I'm feeling dizzy, then I need a break.
• I will have to discuss my limitations with the school secretary, who is very kind and helpful, and also with the teacher I'm working with.

Big Picture

• After volunteering, the doctor would like for me to get a repetitious job as the next step toward
  
  getting back to work again, some kind of bench assembly where I can sit and do the same task for up to four hours a day in order to determine how long it takes for me to become overly fatigued. In this way they'll have a better measure of how much I am capable of doing at a time without all the distractions. He says he doesn't like to have to subject me to something so tedious, especially since there's a lot of really low-functioning people doing that job at the place he's got in mind, but has to recommend I swallow my pride anyway because it's only another step in a process and not something I have to be locked into for the rest of my life. 
• The third step in the process of getting back to work will be to progress in the assembly line job to doing quality control checks where I've got an example to check side-by-side with the finished parts. In this task, as well as any other I undertake for now, I need to avoid doing a lot of up and down and back and forth work with my eyes, as that is bound to bring on dizziness, headaches, and the onset of fatigue again. 
• In the fourth step, I will need to do some job in which I have to overlook the progress of others -- He's thinking maybe as a shipping clerk, so we can see if I'll be able to build up toward a part time position of four hours a day that challenges my brain as closely as if I were teaching without actually putting me back into a school until we know how I'm progressing.
• For the fifth step, the doctor says that if I'm almost done with my degree then I should finish my degree. He says that I can go back to college with accommodations, finish my thesis, and have that master's degree to get a job teaching online. This would be an idea job for me because it will provide me with the kind of time and structure that I need to succeed.
• I didn't know this, but the brain rehabilitation center can get tutoring assistance for me to help me finish what I started at the university. He says there should be no question that the accident stopped me from finishing my class, and that therefore this loss must also be compensated for. 

Addressing Additional Therapy Concerns

• The doctor says that whether they like it or not, the brain rehab will be receiving a letter from him detailing all of the above, but additionally to remind them of his other two recommendations.
• He will see to it that he specifically insists and spells out that I need occupational therapy for my fine motor and organizational needs that have yet to be addressed. Occupational therapy (OT) is the use of treatments to develop, recover, or maintain the daily living and work skills of people with a physical, mental or developmental condition.^[1] Occupational therapy is a client-centered practice that places a premium on the progress towards the client's goals.^[2] Occupational therapy interventions focus on adapting the environment, modifying the task, teaching the skill, and educating the client/family in order to increase participation in and performance of daily activities, particularly those that are meaningful to the client. ~ Wikipedia
• And finally, there is a specific therapy method for PTSD that has turned out to be The Magic Bullet for the long-sought cure/coping skill set to help PTSD sufferers get the control and calm they want for their lives, helping them once again to live effectively.
• The doctor wants me to see someone who specializes in that method of PTSD treatment. I've been having car accident dreams. There's also my fear of the car going too fast at a certain angle, or last night when my brother-in-law hit some ice and the vehicle we were in slid out into the opposing traffic lane and then overcompensated to the right again -- these kinds of things terrify me, and I shouldn't have to live with this problem the rest of my life. If the brain rehab won't help me get the treatment, I may in fact have to look into finding someone myself. I'm not sure where to start, but the doctor is aware of my needs and planned on going home to work on them yet tonight.

My two final thoughts on these long-belabored problems are these:

1. I don't care for the way the brain rehab shrugs off my additional symptoms as if to say, "So you can't sleep in peace or move your right hand effectively? Wow, sorry about your luck, but it's not debilitating enough for us to address. Congradulations. You're average. Have a nice life."
2. Thank God for a neuropsychologist who really cares about his patients as individuals and goes to such extremes to get them the help that they need. This man doesn't seem to ever go home any earlier than eight o'clock on any night, and even then he takes files home with him and goes over them. In my case, he's planning to night on writing a more specific list of recommendations for the insurance company and the brain rehab. He's also going to write a pointed letter to the vocational therapist outlining his plan to help me reclaim my future. 

The accident put my life on hold and altered my course. I thought it had also taken any chance I'd ever had to finally achieve the self-sufficiency I've been fighting so hard to claim, but because so many of the people in my life care about and encourage me every step of this journey, I feel as if I've almost gained more than I had to begin with.