My Neuro Psychologist says that the majority of brain injury patients fall into depression – after their therapists have given them the go-ahead to return to “normal” life, that they are now free to live their lives without having their weeks plotted out for them and mailed to them on a rotation anymore. Instead of being happy, they are deeply depressed.
“And why’s that?” I recall asking.
Being a shrink, he gave the question back to me: “Why do you think that is?” Because, you know, my answer is more relevant than his facts. How I see it, what I think of it, lends insight into how I would feel.
I imagined it must be because it was easier for them not to have responsibility for their own lives, which were being dictated for them on a daily basis. Now they were on their own, they would fail or succeed by their own merits. Maybe I wasn’t ready to be done myself, maybe after two years I was dependent on them after all.
But today was my last “Family” Meeting at the brain rehabilitation center, and I can tell you right now how I’m going to be feeling in the coming weeks:

A.) Relieved to have my own life back.
B.) Disappointed that for some reason I have been thinking for the past couple of years that when the therapists moved out my life could pick up again right where I left off. No one promised me that, but I’m pretty sure they did promise more than what I’ve got.
C.) Wishing things could have happened differently. Wanting to bargain with somebody somewhere in the past – What if I had been more aggressive about getting the level of therapy I really needed? What if they had gotten me into Occupational Therapy sooner? What if I’d had some kind of case manager who could have helped me to get those things done?
D.) Angry because there are things that I’m always going to struggle with. Angry because I want to be like everyone else and skip the naps and burn the candle at both ends and push my way up to the top of the heap.
E.) Guilty for not being grateful enough for all the things I have, for remembering with every breath that I am alive, and that is all that matters.
F.) Wanting really badly to just forget that the whole thing ever happened, to pretend that I’ve always been here and always been this way, and I’m okay with that, I’m doing fine, I don’t want for anything. The bills are being paid and there is food in the house, I have my bus transportation and my friends here – I don’t need anything more.
G.) Daring to hope. Always at the end of everything bad, down at the bottom of a great big pile of bad, always I’m looking for the hope therein. I think of what a beautiful world this is, what wonderful kids I have, how much I love my family, how much I love Dennis, my friends. How I still have a lot to say in life. I’m not teaching in a classroom, but there’s something shining inside that I have got to share with others, and I can still do that in writing, in painting – in how I love others.

My sister wasn’t able to be at the meeting this time around, but she sent an email that pretty much summed things up: “…My understanding is that this will be the last family meeting at that you are all done treating Heather. Please let me know if Heather's interpretation of the situation is incorrect. I wanted to thank you and your staff for all the hard work you've put into Heather's rehabilitation. It's been a long and interesting process and I've been happy to help as soon as I realized how involved I needed to be. It's been very educational. I also just wanted to make sure that I understand where Heather is and what will be needed for her from here out. There are a lot of skills and steps that Heather has progressed with through the combined efforts of [you, and Heather’s] Tuesday group. Obviously this list isn't exhaustive, but off of the top of my head: · Speech and conversational skills · Information Processing · Memory and scheduling compensational skills · Physical exhaustion management · Surviving relatively independently · Initiating an application for social security · Transportation · Neural fatigue management · Accepting changes to her quality of life (ongoing)
“Obviously Heather could not recover to her full capacity from before the accident, so things that she will continue to struggle with and hopefully improve on include: · Neural fatigue (which leads to greater problems managing even skills that she is typically doing well with) · Information Processing · Problem solving · Sleep hygiene · Medication management · Scheduling and memory compensation · Budgeting · Driving skills
“Things that she is currently unable to do include: · Drive at all other than the 15 minutes from her home to work · Complete more than roughly 4 hours of work a day · Manage a day successfully without a nap in the middle of the day · Complete her masters degree in education · Work in a classroom · Work in a fast-paced position · Work without compensation for her disability
“Questions that I still have include: · Will you provide a therapy wrap up/release statement that details her capabilities? o Heather's understanding was that she could contact your offices whenever she needed a statement for Social Security, housing, food stamp, and other considerations. Is that accurate? What kind of turn around can she expect when she needs something like that? · What happens if she moves, or changes jobs? o Will she need further driving instruction? o Will she need further vocational therapy? o Where can she get further therapy if she moves away from Lansing? o Could she get a referral? I might have more questions that I haven't thought of yet. but this is basically what I would have brought to a family meeting were I able to attend. Once again with sincere thanks...”

Judging by what I understood from the meeting, Thea wasn’t wrong in her assessment of my situation. Origami is signing off. The Vocational Therapist will touch base with me a couple of times within the next couple of months to help with the transition between my old boss and my new boss (There’s actually kind of like a whole committee of bosses, who fortunately are going to be sticking around to help as well). I am by all reports doing well in the quiet, organized atmosphere with the routine schedule (Unless I’m overtired, which is when all bets are off regardless of what I’m doing).

“Heather, we have discussed that you might be able to work a couple of extra hours if you were to have a more repetitive job, but you have expressed concern that you might not be challenged enough by such a job and, frankly, I would have a really hard time with a job like that myself. If you were to change jobs at some point in the future, know that I’m always here for you if you need me. Meanwhile, I’m happy to see that you have finally been contacted by the social security administration regarding your claim, as you will need to be compensated for the work that you are no longer able to do. Although they do usually turn everyone down initially, I think you have a good case with them, given the extremely debilitating effects that neuro fatigue still has on you after two years of recovery.”
The Occupational Therapist then listed things that she feels I am doing well. Since January (when we had our last meeting) and now, I have transitioned into independent housing and am caring for my children relatively well. “And we have a new system in which Heather is keeping her weekly grocery money in envelopes so that she can keep track of her spending and also use the checking account solely for bill paying purposes. So, Heather, how’s that going so far?”

“Um… I lost the envelopes.”
“…and we implemented a new pill reminder system so that she will stop forgetting to take her pills…”
“It’s kind of working – I only missed them twice last week…”
“Well, ANYway, Heather is probably always going to struggle with budgeting, sequencing, organizing, problem-solving when there are sudden changes in her plans or schedule. Rest breaks and time management are always going to be the key to her success in any endeavor. I estimate that we should be done within the next two weeks.”

Why am I so organized at work and not at home? Because I get the great privilege of working first thing in the morning, when my brain is working to its fullest capacity. Also, work has a built-in schedule, tasks that are the same from week to week, and people who worry that things won’t get done, or notice when things don’t get done, and are sure to remind me. In other words, I have the same level of supervision as I did when I lived with Thea and Paul. More. And the bonus is that I actually get paid for doing this stuff, which surprisingly I really enjoy doing. I think it’s because I love people and helping people out, and there are enough creative things to do to keep that side of me satisfied as well.
But I sat at the meeting and marveled at how I could have been just a few classes short of a master’s degree in teaching just a couple of years ago, working full time and considering a job teaching online -- and now I’m weighing the pros and cons of a part time office job over an assembly line job at a factory. With no one but myself foreseeing my ability to do much more in the future.
The medical doctor from the rehab who has been prescribing my treatment told me at the meeting that they are all very proud of how far I’ve progressed, that they would write up a summary of what I have done and what their recommendations will be for my future. She explained that sadly they had not gotten a report back from the driving inspector regarding my future at the wheel yet, but that in the meantime my family should be compensated for helping me go back and forth to pick up Stuart and Lucy for the weekends, and in the future the auto insurance company is still obligated to cover any travel I need to brain-related medical appointments or therapies. The brain rehab will contact me via email when they get further information regarding the driving issue. If I have any further brain-related problems in the future, they are, of course, always there for me... I just have to get a referral from a medical doctor before approaching them.
Now that they are closing shop, it's probably too late for my Neuro Psychologist’s Office to get further therapy for me. He had said that I needed it, and had told me several times that he had sent the recommendation to the new doctor and therapy program he wanted for me (that he felt would be better than what I actually got), but even with his referral and several phone calls on my part, nothing ever came of that in time to be of any use to me. I mean, what are the chances that the auto company, after finding out they are all done paying for my brain treatment, are going to welcome more payments toward an all new therapy program for me? Certainly not after getting the report from the brain rehabilitation folks stating that my therapy is finished and that I am doing the best that I can do now.
That’s it.
It is kind of depressing, isn't it?
I'm not sure anymore if ANY therapy was really ever going to end with any kind of peace or sense of closure -- Maybe I could have gotten OT sooner and would be further along (the neuro psychologist thought so), but regardless I'm still stuck unable to do the things that I used to do, or to live the life I planned and spent thousands in college to achieve. There's no way this was ever going to be a happy conclusion... Except that I do love my current job, still get to paint and to write, and if I can master my fatigue and time management, I now have more time to do those things.

Maybe it was the only way that was ever going to happen, and maybe that's what I can look at as the reason behind it all. I am not one of those people who really believes that everything happens for a reason -- sometimes bad things happen, and they are random, and they will never make any sense. The “reason” isn’t the important thing, but my reaction is. Writing and painting have been my calling since a very young age, and somehow, despite all the distractions and sincere efforts to do other things that seemed more practical at the time, these are what I have left in me that I can still do without any doubt or question.
It’s all still up to me, and always has been.
That’s not depressing at all.

The Two Year Mark

I want a t-shirt that says this.

Disturbing Day Yesterday, no doubt about it. First I talked to the car insurance company's claims adjuster, and that conversation was alarming. We discussed how my recovery is going, and I explained that I'm almost done with Vocational Therapy, waiting to get the results of my driver's test, and still struggling with some of the symptoms. (Is it a symptom anymore when it's been two years?)

He asked if the brain injury rehab center  and Doctor Cook had gotten copies of my independent evaluation yet or not because, from his standpoint, they must all agree with it. All he has on file is what Dr Fabiano gave him and, according to Dr Fabiano, I should have been working full time within two months of the date the insurance company received the results of his IME, which TECHNICALLY is in two weeks!
He said he would send a copy of Dr Fabiano's report to Dr Cook for me, and that I should bring a copy to my family meeting for Origami, and that they all have just this one month from receiving these copies of the IME to send their rebuttals.
I happen to know that Dr Cook, at least, has been working hard on mine, but what I think I correctly read between the lines was that the adjuster is actually WORKING WITH me on this a little in that he's provided them an extra cushion of time in which to present him with some evidence to support their diagnosis of me as opposed to Dr Fabiano's.
I don't think he Had to do that.
So I went in to the tri-monthly family meeting at the brain rehab feeling angry with themi and ready to give them a piece of my mind, because Two Months ago my two remaining therapists told me that they had put in a strongly - worded report to the insurance company detailing what treatment I still needed and providing evidence as to why that is. Then after I handed them a copy of my IME, I found out that their report was never sent because Michael, Care Coordinator, had talked it over with their resident doctor and decided that if they sent that report to the insurance company asking for an expensive transition into independence, they might just get my case cancelled completely.
But talking with the adjuster made me mad, because I had told them that it was MY treatment and MY life, and all I wanted was for them to TRY. The worse that could happen is that my insurance would be canceled, and I would have to try to do their jobs for them (which sometimes I feel like I'm doing already) at home for myself. 

When I got to the family meeting and started to tell them what the adjuster told me, their response was, "DID we get your IME? The insurance company  is supposed to send us your IME. This is good, though, because now we can just SAY we only just got it from you today, and then we will still have a month to send our rebuttal." (Finally!) 

When I reminded them that I already gave them those test results two months ago, they didn't deny it. They were far too eager to throw Drew, Doc "Fab," and Dr Cook under the bus over getting things done in a timely fashion. It's frustrating. Thea has reached the conclusion that they're giving me the short end of the stick because I don't have good insurance, but I don't believe that. I think what's happening here is that they don't often get cases like mine and really aren't prepared to handle it. They'll make suggestions and recommendations, but then they keep ending up pulling the rug out from under me when they find out I don't "quite" fit the established criteria for a certain program. For example, they suggested moving me into occupational therapy housing- based independent living arrangement that is a test environment where the Occupational Therapist would monitor me for a year or so to make sure none of my particular issues would hinder my progress. They all agreed I needed it and were supposed to send that report -- And then they found out that the program prioritizes families over individuals when deciding who gets in -- And they chickened out.

Huh. I just remembered that my friend Sam whom I met through the brain rehab was recently moved to the assisted housing -- She lives alone and has no children at all...

That said, here's the brain rehab's current plan:
With Kathie the Vocational Therapist  this week, I'm going to continue following up with the Social Security Office. She doesn't think I can ever work full time again, so something has to be done to pay my bills. The plan was never to live with my sister forever.
One option she mentioned would be to work at the church in the morning, go home for a nap, and then work a second job tutoring or something to supplement my income -- But she wanted to be clear in saying that this is more of a future aspiration for me, as she doesn't think I could do more hours right now, and I can agree because I keep trying to work longer hours just to push myself a little, and the doctor keeps reprimanding me for pushing. Neuro fatigue can NOT be "Pushed" through.
According to what Kathie is putting in her report, if I continue with the job I'm doing right now, I will be done with Vocational Therapy within the next month, because I'm doing great.
If the insurance company insists on transitioning me to full time work as Dr Fabiano suggests, THEN we're looking at another 12 months, and  with almost certain knowledge that I won't be capable of doing it.
Transitioning into Independent Living, the maximum amount of time I would need for continuing OT at the assistant living apartments would take another 12 months, but they've since determined that families are prioritized over individuals, so I won't be able to get in there (not "MIGHT," as it should be). I'm wondering why they ever brought it up in the first place.
Thea thinks they must spend about 75% of their staff meetings training in ways to manipulate clients into choosing the safest path for them as opposed to the best path for the client.
I think they just worry a LOT about getting paid by the insurance company or not, and legitimately struggle between what they think is Right, and what they think is the most cautious approach.
If I get approved for housing through the Housing Commission, they're thinking they could withdraw services in more like only 6 months, because honestly it's more affordable and I could make it on my own once they've gotten me settled in and helped me work out what

my challenges are and have provided coping skills for them.
Meantime, Jessica the Occupational therapist says she'll revisit do-it-myself home therapy exercises for my fine motor coordination because my coordination still isn't up to par, and she's holding off on everything else waiting to get me out of my sister's basement so she can get an accurate measurement of my progress.
She and Thea got off on a tangent about how I get locked into a task or plan and struggle with being flexible. For example: It's pouring rain when I get off work. My sister can't take me home, so I decide to just get some work done until either she CAN, or until I come up with a plan B. I get so engrossed in what I'm working on that it's four o'clock before I even realize it. Jessica is hoping to help me develop the coping skills I need to overcome my mental inflexibility. She was vague as to HOW, but when I see her in my appointment this week, I'll be sure to bring it up. Dr Cook suggested setting a timer for each task, though, and I'm going to experiment with his approach.
While waiting for the Housing Commission's response (which by their word should be next week at the latest), Jessica is going to look into other potential housing with me because she spoke to their transitional housing staff person and discovered that from Eaton County I could take the bus into Wacousta and even Lansing if I needed to, because either they're not as restrictive as Clinton County's public transportation, or they have special rules for a "disability." (Whatever. I don't have to use that word. I can look at it as having some challenges to overcome.)
Michael, Care Coordinator, emailed the TBI Driving Specialist, asking once again for the results of my evaluation. If he hadn't done it right in front of me, I would have gotten snarky and asked him if he really sent it, or was just talking about sending it.
Michael doesn't foresee having more than one final wrap-up meeting with me and my family once Kathie signs off on me, because they don't coordinate those meetings for single-therapy clients who have been declared independent. This makes me really happy, because it's been almost two years now, and I'm getting really tired of feeling as if my fate is completely controlled by therapists and the auto insurance company instead of, oh, I don't know -- Like mySELF and God.
I feel I'm ready for this.
Tonight I talked to Dr Cook and made sure he's aware of the time-line I'm facing in case he could get those test results rolling in any more quickly.
He agreed that the auto insurance adjuster is offering us more time because he would like information with which to help me. If that's the case, I understand it's gotten to be a huge exception to the average claims adjuster.
Dr Cook isn't one to brag, but I'm always happy to do it for him: The first Independent Evaluation I had with Dr Fabiano went about the same as this one, with him twisting my words to fit with what he had predestined to be my test results in the five minutes he spoke to me before his assistant administered the tests so that he could go type his version of the results. Not kidding -- They place bets on who's going to finish first. But THEN Dr Cook sailed in with his rebuttal, and he backed up all of his points with extensive testing data. And from that day, insurance adjuster seems to have realized that I don't fit the mold. (Thea joked to the Origami Team that Dr Cook convinced the man that he was, after all, only a mere claims adjuster, which made them laugh.)
Dr Cook says that Dr Fabiano is attempting to convince the insurance company that I'm not brain injured at all, but rather that I have always been this way, and he said plenty to both Origami AND the Insurance company about what he means by "this" way: He claims that his abbreviated version of the psychological part of testing revealed that I have a dependent personality that is so bad that I would become dependent on any further assistance that the insurance company would allow, even stooping to the point of convincing myself that I'm too brain damaged to do anything for myself.
"Wow," I said. "That's convenient. Now when I tell the insurance company that I don't agree with Dr Fabiano's report because there really are still symptoms that I struggle with daily, he can claim that my protest just proves his point!"
Dr Cook smiled encouragingly at me. With a twinkle in his eye, he said, "Sounds to me, Heather, like you're not the one with the psychosis here."
It feels good to laugh.
"Don't worry about Dr Fabiano," He said. "You focus on healing and using that uniquely designed brain of yours to improve your life just like you're doing right now, and let me send the claims adjuster my rebuttal. As you know, I do the FULL 500 Question psychological report, and what Dr Fabiano claims is pure fiction. There is no sign of any such diagnosis. A woman who fakes illness to get 'taken car of' doesn't insist on choosing the hard job over the assembly line, never leaves her ex husband or go to college, doesn't strive tirelessly to become a full-time teacher for so many years, doesn't have a 3.8 GPA, and doesn't work so hard at therapy, push the limits of what everyone tells her is possible, or aspire to live independently even when she has a loving family who has made it clear to her that she can live with them for as long as she needs to, even if that means for the rest of her life. 

"And your tests will speak for themselves. They will explain once again how you can be such an excellent speaker, beautiful writer, and in general just the charming, witty person that you are and, yes, STILL have a BRAIN INJURY. You called it Swiss Cheese Brain once [I totally stole that term from Quantum Leap]. Well, that's an apt description -- you do. There are parts of your brain that no longer work as they used to. Because it's a diffuse injury, you can be really clever in one area, and still terrible at something very close to it. We're taking about multiple fissures too small and complex for the naked eye to perceive. Add to that the medium to severe damage in that area behind your left ear, and what do we get?"
Me: "Swiss cheese?"
"A woman who could write a better rebuttal than any of the very experienced and professional staff of therapists at the brain rehabilitation center, but who can't make a logical argument when confronted point-blank in person, and doesn't understand the nuances everything that what was said until writing it down later, or discussing it with a sounding board. A woman who can glance at a puzzle and tell me what it is without putting it together,  but who would take weeks or even months to physically sit down and put the pieces together. A woman who can paint a masterpiece in vivid fine detail, but will miss important details when baking a cake from a recipe if there's too much noise in the background. A woman who can write for hours at a time and not hear a thing going on around her, but can't focus on a conversation for more than 15 minutes. People who simply do not understand brain injury are always going to try to tell you that you're faking it or that you're exaggerating, and they will use your symptoms against you to "prove" it -- 'You can spend five hours painting, but you can barely work five hours? You can read and completely tune people out, but a little noise is supposed to mess you up when you're reading a recipe? If you have a brain injury, then how can you go to work, how come you can write like that? Why are you taking naps every day? You're just being lazy.'"

Randy spoke up: "You really gotta learn not to give a shit what people think. You're fine. You're fiiiine! And funny, too!"

"Thanks, Randy --  Dr Cook, you do realize, right, that saying I have like nano fissures in my brain that nobody can see sounds AWFULLY convenient too, don't you?" 

"It may SOUND that way, but your tests SHOW the way. I'll send my rebuttal bullet - pointing your results and how they compare to Dr Fabiano's, and then the test results themselves with a detailed explanation of your neurofatigue and how it affects your capabilities."

Knowledge is Power! Right, guys?!

Paul's response to the Brain Rehab's Family Meeting was, "You're being awfully nice, considering this is your LIFE they're messing with!"

The problem is, once I'm there hearing out their side of the story in person, with their smiling

faces, I fully buy into it. I would need an advocate who could trouble -shoot problems and follow up more aggressively than I seem able to do. PAUL would actually be GOOD at this, if he could make the time. I try really hard to advocate for myself, but I can't be direct about a problem that I'm just not seeing at the time. I have to have time to think about what was said. It's something we were all talking about in TBI Group tonight, how having a brain injury can mean delayed processing. In a detailed conversation with a lot going on under the surface,  I might not always get what you mean at first but, given a few moments afterward, it all comes to me, along with all the nuances I need to read between the lines. I can't tell you how many times I've heard people with TBI describe this very thing. They have a complex conversation with a therapist, doctor, lawyer, or claims adjuster. They don't get mad about what was said until after they've left the office and gotten back into their car. In that moment of quiet, reflection hits with a vengeance. 

The two positive outcomes I get out of all of these discussions about therapy are that, A.) It appears I'm reaching the finish line, and B.) When I get the results of all these things I've got up in the air, then I will finally know for sure what I've got to work with and be able to plan ahead. Granted these two things, I think I can make peace with myself. 

It occurred to me a few nights ago that I'm coming upon the two year mark since my accident -- It just hit me all at once: Although I don't believe in limiting myself within a numerical standard, statistically, after two years, the drastic, most significant improvements in brain functioning have already taken place. From here on out, I can go ahead and expect miracles as I prefer, but to the average observer I will never make as much progress again as I have up to this point. So says the average results, and the hypothetical deadline is in only two months (By which time, for Dr Fabiano's money, I should be working full time again)

Then my freak - out session commences:  But -- Wait! HOLD ON just a MINUTE  here !-- NEVER?! BUT -- but -- I can still only work between four and five hours a day before I'm too tired to think productively anymore! I can't read all the time because my eyes get bloodshot and my head starts feeling squeezed. I still develop headaches and pressure in my skull on a daily basis, I still get clumsy when I'm tired, I still struggle with world-finding issues if overtired, I still have to take a nap every afternoon just to be able to FUNCTION for the rest of the evening, I feel sick and dizzy when I over - do it, I still get overwhelmed in crowds, still get confused if there's too much going on at once, have to be SUPER organized and work from a list, need extra time to get complex jobs done without making mistakes or leaving things out, can't do simple math in my head, can't drive a car with any background noise or in heavy traffic or at night, and I'm still living in my sister's basement. 

THIS CAN'T BE IT!!! 

THIS would mean that the brain rehab is RIGHT when they keep shaking their heads at me and patiently explaining to me that I have a "disability" now, that I can't push my way through things anymore and expect good results -- That I can't work full time anymore unless I want to focus all my attention and all my strength solely on a job, leaving me no energy or intellect with which to even raise my children properly, or do anything else in the shadow of the kind of down time I would require to recover from one simple eight hour shift. I can't teach in a classroom with thirty kids to manage without suffering extreme neuro fatigue, never be able to drive the 2 1/2 hours alone to pick up my kids for weekends unless I plan on taking a nap every couple of hours...
Never?
Of course not!"
But all this blasts my brain and batters my emotions like a gale, like rain pounding against my skull in a thousand simultaneous water tortures, one fearful, negative thought per drop, administered by the thousands at lightening speed --

And then Dennis, who normally tends to be a half-empty sort of a guy most of the time, completely surprises me, takes my hand and simply looks at me until I'm forced to meet his gaze (I have to be looking at you to listen. You must always get my full attention before you start to tell me anything, because I will NOT HEAR you if I'm reading or completing any given task while you're talking. I need to focus only on you, and I will always need to take notes if it is anything that I have to remember). 

Dennis looks me in the eyes, gives my hand a firm squeeze, and he says, "Heather, there isn't anything wrong with being exactly who and how you are RIGHT NOW. Lots of people love you. You are one of the smartest people I know. You are talented, witty, and kind. You are stronger and braver than anyone else I know, and you've got empathy and compassion enough for every single person that you meet, even when most people wouldn't  think that they deserve it, even if it means having to humble yourself a little to do it. You don't work long, but you work hard. You don't think fast, but you think deep, right? You can't work long hours, but you're doing a GREAT job with the time that you've got.
You never thought you'd be able to enjoy reading again, but you do. They didn't think you could do the call center job, but you did. They keep saying you can't do the job you're doing, but you are. And you're not just doing it; you're doing it WELL. And that goes for all sorts of things, more things than you obviously can appreciate.
If you stay just exactly the way you are right in this moment for the rest of your life,  I won't love you even a little bit less than I do right now."

Pause.

Me: "I still MIGHT get better, right?"

"You are absolutely, 100% perfect just the way you are."

"Smart answer."

"The truth? Of course it is."

I may not know for sure what's going to happen with my therapy, my brain or my life, but one thing seems clear: 

This guy's a keeper. 

He just has to wait until I have successfully transitioned back into an independent lifestyle, have finished painting my series and finished becoming the greatest Office Administrator I can possibly be. I'm going to cut him some slack so far as finishing my novel goes, seeing as how I have been writing it on and off for well over twenty years. Some things I can save until later, and the best for last. 

I think that phrase means simply that being last is actually what makes a thing special in the first place, makes it the best.

That's cool, because I was forty before I met Dennis, and unless it's a job or an appointment,  I'm very nearly always late. 

Lazy, Hypochondriac Old Brain Anyway!

I'm not sure how much I shared with you about my Independent Evaluation, so I'm just going to hit the highlights and then tell you about the results that came in the mail yesterday: 

1. The Doctor preforming my Independent Evaluation only talked to me for about five minutes.
2. He made a show of being personable for a moment, but then he developed a patronizing tone and asked me about four questions, and those were very leading questions. For example, when he asked me what symptoms I was still "claiming" to have, and when I started by saying, "I've improved a lot, but --" he cut me off before I could really tell him what lingering problems I'm actually still having. It was as if "I've improved a lot" was all he really wanted to hear.
3. He glanced over the shoulder of his testing guy to skim whatever notes they had on file for me and said he remembered me and something about my not having a significant injury at all. This troubles me because I have records from Urgent Care,the ER, my neuropsychologist, my primary care physician at the time, and the entire staff at the brian rehabilitation center. Surely all these people, who have certainly seen me more frequently and gotten to know me quite well, all these people can't all be wrong?
4. Another thing that Dr IME said that bothered me was that I'd had pre-existing anxiety, and that "people like me" can sometimes make something out to be a much bigger deal than it actually was, that "people like me" exaggerate their symptoms when they're "shaken up." I resent the implication that I'm just overreacting because I've got some kind of a mental issue instead of a very real physical injury that is temporarily holding me back. Even he in his earlier report had had to admit that I was experiencing some difficulties. Did he make that up? It is offensive and bigoted to use my past experiences and counseling as excuses not to help me get my life back in the wake of my car accident. That I went to counseling for anxiety in the past was a healthy decision on my part -- It eliminated the problem. That shouldn't be used against me now. 
5. I started to tell Dr IME that I can't spell as well as I used to be able to do, but he interrupted me and said that I had had high scores in spelling when I took the last test with him, over a year ago. I didn't care for the way he blew off my concerns and didn't let me finish my sentence, or even to tell him anything more. I had to take that spelling test again this time with his assistant, and it was pretty easy, but you must understand that I taught eighth grade spelling. I was an English Major and I read a lot. I had and have a huge vocabulary -- and that now when I'm writing I often stare at a word and no longer have any clear idea if it is correct or not. I'm glad that I passed his test, but that doesn't mean I can go back to teaching kids to spell. My ability to think on my feet is gone, and I could never keep track of an entire classroom of kids with the attention span I have now.
6. Dr. IME wasn't interested in getting to know me or in finding the truth about what's been going on. He got the information he wanted and he walked out without asking me if I had anything more to say. I know I should have been more assertive, but that's hard to do when someone is making unfair assumptions about you. It's very intimidating.
7. When they (whoever they are) sent me the letter telling me the date and time to be there for this IME, the note said that I could expect to be there for between four and eight hours, and to bring a snack. It took about three hours. I get kind of competitive about those tests, even though the only thing I'm actually competing against is how my brain was just after the accident -- because really it's what my brain was before the accident that I want to see again. I did the best job that I could do, and the result was that somewhere toward the end when I was doing the one with the shapes and colors on the computer screen, I was starting to have a really hard time keeping my eyes open and my head up. That's neuro-fatigue, which is one of my major problems, and I don't think Dr IME could see whether or not I have that problem when he was only there for five minutes, and I don't know if the guy testing me knew to look for it or not.
8. I guess my frustration with the doctor besides his unprofessional attitude is that he didn't seem to be testing me for any of the types of things that are actually still difficult for me. Spelling isn't such a big deal. We have spell correct these days.I can't teach the subject anymore if I mix up words like "Chores" and "Choirs" a lot now, because I wouldn't be able to tell on the spot or in the spur of the moment how to spell any given word. Or maybe one day I can. I spent $100,000 on a teaching degree -- I was two classes away from getting my Master's Degree. I resent that this stranger would accuse me of faking or psychosomatically exaggerating the seriousness of my problem. Why would I do that? I'm not getting any kind of settlement for what happened to me, and if I could go back to work full time I wouldn't need therapy or any money. I spent all that time and all that money on that career because I loved teaching English and I couldn't imagine doing anything else with my life. It's killing me that I can't teach anymore. It's discouraging, but I'm doing the very best I can to follow through on all my therapy so that I can hopefully one day still go back to teaching full time. That's what I want. That's the goal. 
9. What about balancing my check book or keeping my things organized and where I can find them? What about being able to cook without accidentally putting in too much of one ingredient, or burning something, because I get distracted and lose track of what I'm doing? How will I do at paying my bills? How can I find a place to live on my income with the few short hours I can work before I'm too fatigued to keep enough hours to pay rent? How can I drive when I'm so easily distracted? I'm waiting on the answers that the IME doctor either could not test, or did not to test, and all the while I'm aware that when people think of brain injury they are never picturing a woman like me who can still write beautiful, well-reasoned arguments and works as an office assistant. They don't realize all the little things that turn into big things.They aren't looking very closely because they don't know what it is that they're looking for. Well I can tell you, one of the things that they can look for is whether or not a shape and color test on a monitor should be exhausting after only three hours. Dr IME didn't stick around to see that. Are there tests that he could do that would test fatigue? Does he have tests about abstract reasoning or decision-making? Are there tests of how memory is affected when I do different mental tasks for different periods of time? Can he test how well I am organized at home, or how I stay on task and successfully complete tasks around the house when I'm distracted? It seems to me like a lot of my problems involve things that there are no standardized tests for, but I'm not a neuropsychologist and I  hope that I'm wrong, or that the insurance company can take into consideration what my family is seeing and what my therapists see.

Before this happened to me, I would never have realized that a person with a high IQ could be in a car accident, suffer a brain injury, and then only have some small part of their brain damaged in such a way that they can still walk and talk as they always had.I always kind of assumed that brain damage meant the entire brain. I wouldn't understand how a person with an IQ of 145 could possibly also struggle with every day decisions, understanding conversations, recalling things in the right order, and various other little changes that only those who know me could notice are missing -- or everyone who talks to me, when I happen to be overtired.  My boyfriend met me after the accident, and it's nice because he doesn't miss how I used to be, doesn't know how I used to be. But even he can see that mental exercise tires me out, and that when I'm overtired I stop thinking clearly, stop remembering words that I'm trying to get out, and start saying things that I didn't intend to say, like chairs instead of choirs. But then that's brain injury -- It makes sense. The part of my brain that's injured makes logical reasoning difficult for me, especially if I'm trying to solve something mathematical in my head, or faced with something new that I don't know how to approach. But the part of my brain that is not injured is still well above average, and gets ideas on a page faster and more clearly than most people. So I'm very fortunate in that, so I've been using that part of my brain, using my strengths, to explain to Mr Insurance Adjuster why I believe I still need to complete my therapy despite Dr IME's assumptions. I can only tell him the truth and hope that he is willing to see it proven.

The results of the Independent Examination were mailed to me by the Insurance Adjuster who sounds like a stuffy-nosed high school kid. What he wrote serves as sort of a cover letter for IME Report from the Dark Side. In it, the insurance adjuster states that my doctor's nemesis has determined that I should be completely done with brain therapy by the end of the year. He advises that I "should continue with my 'psychotherapy' at Community Mental Health for the same time period. However, any further treatment beyond two months" would likely be related to my "pre-existing conditions of both anxiety and depression."

Mr Insurance Adjuster advises that I share this report with all of my doctors and therapists, so that they can form rebuttals to these statements "if they happen to disagree with the medical opinion of Dr IME."

Oh, it only gets better from here.

First of all, in his opening summary of my case, Dr IME states that I am "well acquainted" with him, having previously seen him for all of five minutes almost two years ago.

I guess the extra five minutes he spent on me this time really clinched the deal. 

He points out that I was released on the same day of my accident and eventually referred to the neuropsychologist for testing and follow-up treatment. Once again, Dr IME stated that my doctor's "claim that there were two collisions and therefore two TBI's within that one accident" are merely guesswork, because there's no way my doctor could know that without having been on the scene at the time of the accident. 

This is bullshit, because it's right in my police report that I was hit by two different vehicles, which Dr IME would know if he'd bothered to do any research, or to remember my own description of the accident. He says that I probably suffered a little bit of amnesia for about two hours following the accident, and then went home with a mild injury to my brain. 

Dr IME details my doctor's recent observational evaluations of me from the TBI Group, particularly the time that my brother-in-law came in with me and we talked about all the issues I was having at home in relation to my TBI -- and then said that, according to his findings, these claims are not valid. Previously when he tested me, Dr IME says, I "had a full-scale IQ of 117 (87th Percentile)" placing my "overall intellectual abilities at the high-average range." This, he says, even exceeds his "premorbid baseline estimates," which just means how smart he imagines I might have been before the accident. Thank you very much for that vote of confidence, Doctor. I really appreciate it.

Continuing further, he says that I'm solidly average in almost all aspects, if mildly depressed, including executive functioning. He mentions that I taught reading for thirteen years, and I have no idea why he thinks that. I wish he'd asked me about it in person. It must have been from something I said the last time, because he certainly didn't ask me anything about my past this go-round. He notes that I was "well-kept and dressed appropriately," that my "conversational speech was spontaneous, fluent, and articulate." I did not appear to be depressed or anxious, and my "mood and demeanor were quite pleasant."

I wish his had been a little more pleasant.

The IME test results say that I've got a Verbal IQ of 120 (within the 97th Percentile), that my perceptional reasoning index is 105 (within the 63rd Percentile), which places my "overall intellectual abilities within the average range." 

Of note was the fact that in my auditory, attention and concentration, I show "a sizable drop from previous test results," in that my Working Memory Index score was only in the 13th Percentile. He says that previously I scored higher than that, and in the low average range for mental arithmetic. 

Test Break Downs:

1. Verbal Intelligence: For detecting similarities, I scored at the range of a thirteen year old, in the 81st percentile, and in Verbal Comprehension of Information Processed I scored at fourteen, in the 91st Percentile.
2. I Perceptional Reasoning, I scored in the 84th Percentile, too, and in Matrix Reasoning I scored... A nine. Thirty-seventh Percentile.
3. My Working Memory was at an 8, the 25th percentile, and my Arithmetic's age-scaled score was 6, in the ninth percentile.
4. My Processing Speed was that of an 11yr old, in the 63rd Percentile, and for "coding" I got a ten, in the 50th Percentile. 
5. I got a high average in "fund" knowledge and abstract verbal reasoning, which basically corroborates my own doctor's recent findings that so long as I'm drawing from previous, predictable, information, I am very smart.  
6. I was high average in spatial perception and average performance in nonverbal reasoning and visual-motor processing speed. 
7. Mental arithmetic tested at the mild range of impairment "indicating the only isolated area of difficulty. Otherwise, intellectual test scores are solidly normal and often well above average, particularly areas of verbal concept formation." 
8. My memory is in the 45th Percentile, 
9. Visual memory's in the 84th percentile, resulting in a Delayed Memory Index of 108 (70th Percentile), which places my overall memory and new learning capacity at the high-average range." Yay! Hence my job success. :-)
10. He claims my fine moter is "fine" (LOL), which directly goes against the findings of my own doctor, the doctor who administered my original neurological testing, and my current Occupational Therapist. And besides all this, the man only spoke with and observed me for five minutes. His young intern did the testing.
11. Then he had me do a "set of academic achievement tests. I scored at a twelfth grade level in reading and spelling, and an 8th grade level in math (25th Percentile).

Oh, how the mighty have fallen!

Kidding.

I never was very good with math, and it involves an area of reasoning that is now damaged, to boot. 

Now, as my boyfriend, being a social security disability attorney, pointed out, is that I can't score in the high average for verbal intelligence and then have a 15 Point drop in Perceptual Reasoning unless I've got an actual brain injury, just as my other doctors and therapists have said. 

I can't process verbal information within the 91st Percentile and then score only in the 77th Percentile in spelling. For one thing, verbal intelligence isn't in the same part of the brain as spelling. Spelling involves sequencing, which takes place in the temporal lobe and, based on all my symptoms, my temporal lobe is damaged. Last week my doctor told me that, by his recent tests, expressing things verbally is easy for me, aloud or in writing, too, but that I don't remember what is said to me out loud in the correct sequence, and that it's this that is adversely affecting my communication with close friends and family members.

Going back to the IME report, the doctor does recommend that I should continue keeping a written daily schedule in a planner, but that otherwise the "subjective complaints voiced not only by [me], but [by my] healthcare professionals, seem to be more within the realm of attentional. I (the independent evaluator) would recommend continuing with the use of structured daily schedules, daily to-do lists, and other strategies to help her organize and centralize information." 

Duh.

The only test given to me regarding executive functioning was the "Trails Test," which is the same old dot-to-dot test that I scored badly on the first and second time I took it. It involved alternate attention in connecting some numbered and lettered dots in order -- from "1" to "A" and then from "2" to "B," and so forth. I've done that same test five times in the past year and a half. I now know exactly where to look. Hardly watching what I was doing with the pencil they provided, I was explaining that to the intern as I did it. All that made it into Dr IME's report was that I scored at a high average in that test as well.

But what the doctor did to me that I find most offensive of all is that, just as I had feared, he used my previous depression and anxiety as marks against me to confirm his findings. Thankfully it could not be denied that I "approached the test items in an open and honest manner," but his head-shrink test revealed that I have "The 'classic' Conversion V' often observed with individuals who do show a preoccupation with physical malfunctioning and a propensity to convert psychological and emotional distress into physical and medical complaints. They are often observed by others to be somewhat dependent.They do show little limited insight as it relates to the behavioral and psychological dynamics." 

All that said, he also found that my depression has had a "slight improvement" since the last time I took his test. 

He claims that I reported "moderate" problems with concentration and fatigue and mild problems with irritability," but that's from the last time I took the test, when I was still having difficulty even expressing myself discernibly, let alone relating well to my environment or anyone else who happened to be in it. 

Then he wrote that "I then administered two tasks of symptom exaggeration or dissimulation."

The man didn't administer shit -- All he did was asked me his four or five very leading questions about my current symptoms, interrupted me after I said I have improved and then tried to tell him what problems I was still having, and then he cut me off completely and walked out of the room. His aide administered the tests, and  I never saw him again, that day or since.

On the bright side, his head shrink test indicated "no objective evidence of feigning psychiatric or neurological disability," and that's in my favor. 

In conclusion, the IME Doctor gives his recommendations, which are as follows:

1. Because I (he means me!) have only "very slight residual effects related to initial traumatic brain injury, which I (Dr IME) would categorize as being mild to moderate in nature. She is showing a very good recovery." 
2. "There was also some exacerbation of her pre-existing history of depression and anxiety, and as such, I do believe that she does require perhaps two more months of rehabilitation with the Brain Rehabilitation Center to achieve maximum medical improvement."
3. "Otherwise, I believe she will be then rapidly approaching her premorbid baseline level of functioning, which unfortunately included pre-existing history of both depression and anxiety. She is an appropriate candidate to continue with her psychotherapy at the Counseling Center."
4. "I believe in two months she will be achieve maximum medical improvement and the counseling will then be related solely to her pre-existing conditions."
5. "I see no need for household services or attendant care."
6. "I believe Ms Hockin is capable of driving independently."
7. "I do believe she requires some degree of offset as it relates to her disability, wage loss replacement as she is not yet capable of completing full-time employment."
8. "However, I do believe there would be an advantage towards assignment of a vocational rehabilitation specialist to perhaps pursue in a more aggressive fashion, direct job placement as I believe she is capable of returning to full employment capacity in the next two months."

Meanwhile,the brain rehab has me waiting on Disability through the Social Security Administration, because none of them feel I would ever be able to preform full-time work again.

Even my optimistic neuropsychologist seems to be leaning toward my finding something else to do part-time within the realm of work that is already familiar to me -- just not teaching in a classroom full of students. He feels all too quickly I'd see the error of assuming that possibility. I still can't stop thinking that someday, some way...

It's confusing to be told that I'll be completely recovered in two months when in fact that's exactly what I want to hear -- especially since it just isn't true.

Basically what the IME Doctor is saying is (If I'm reading this correctly): "You're fine. Get over it, suck it up, get off your ass and get back to work!"

If I am fast approaching the full extent of my capacity for recovery, then I should be happy, right? He's put me into a position where I can't protest his findings without sounding like a hypochondriac who is too lazy to use Spell Check.

All I want is to teach, live in my own home, and be able to pay all my bills on time.

The IME Doctor seems to be saying that there's absolutely nothing stopping me from doing that within the next couple of months.

I hope he turns out to be right.

I think.

​

"Hope is a Thing With Feathers"

The first week in October is National Mental Health Awareness Week. That's important because there is such a terrible stigma around what in essence is simply a medical condition. According to the International weekly journal of science, "more than 350 million people are affected by depression, making it one of the most common disorders in the world." 

A couple of years ago I had such "an acute psychiatric crisis" that I ended up living for two weeks in what they call a "Crisis Unit." Frankly, the Crisis Unit is where you go if you are suicidal. I have PTSD. Something triggered it and I didn't feel safe, even from myself. 

I made it through that terrible time because my family loves me, and because my children need me. Of course those things. But also because I was finally ready to love and need myself. 

While I was "locked up," I painted this picture. I posted it on Facebook, and a lot of people loved it. Most of you didn't know that I was suffering because I was ashamed of it and didn't want anyone to know. People who don't experience depression find it almost impossible to comprehend, and that's one of the reasons people blow it off or try not to talk about it. We don't pretend AIDS doesn't exist just because we don't have it. 
People don't get help for depression and other serious mental illnesses because they are afraid of what others will think, or how it will make them look in the eyes of their employer or their family, and their fear can literally kill them. 
People also don't get help because they simply cannot pay for the treatment, because health insurance in this country doesn't cover "Mental" health. It should. We should remove the "quotes" from around this word. People are dying from these types of illnesses simply because they have gone too long untreated. 


I went into the Crisis Unit because my life seemed like a cycle of pain that was never going to get any better. But I got better, and so I painted a picture about hope, about how someone can still sing even while in the fire just so long as they have reason to believe that things can and will improve if they only stick around long enough to find out. 
Today I am a happier and person for having gone through that experience without trying to "tough it out" completely alone. I allowed people to help me even as I feared to expose how completely empty and worthless I felt about myself at that time.
And I am a stronger person, too, in allowing myself to be so vulnerable in the face of that stigma. That's something I think not everyone realizes -- That in exposing your weakness you show great courage and strength. 

I hope I can be "real" about what happened to me without being judged, but I've reached a point where I'm going to just be real anyway. Maybe if you're suffering right now, you will feel less alone knowing that I've been there too, or that I care if you're going through a hard time. Whatever you do, don't be afraid or ashamed to bring it up on a public forum. You could potentially break a cycle of shallow, surface socializing that so many of us complain of but not enough of us do anything about. You have my support.

With A Little Help From My Friends (And Acceptance of Myself)

It's year and a half since my car accident, and still we have questions regarding my independent living skills and executive functioning, all of which are tested using my ability to focus, remember, and manage my neurofatigue.
Intelligence is largely determined by how fast we think and how much we are able to remember (God help us all as we age!).
In my case the the neuro psychologist's tests are to both show my progress, and to expose the areas that have stayed the same. To some extent, re-testing hypothetically predicts my future. Can I ever move out of my sister's house and live by myself again?
You can't tell in a two to three sentence Facebook post what's been going on in my life, that my finances and all my other affairs are in a snarl and that all my success revolves around repetition in my schedule and heavily leans on getting cues from the people around me. My family remind me of things, ask me questions to make sure I understand things, and to some extent have been forced to really get into my business to make sure I don't capsize my rickety little boat.
I don't have the exact numbers yet, and I am certainly not a number, but the concern with me is that I may be so affected by fatigue and perhaps some other type of damage that I am unable to think quickly, or even reasonably, unless I learn to pace myself better.
All I could infer from re-testing last night was that 45 minutes into it I struggled to focus, had a harder time remembering details of the tasks set before me, and indeed started to slow down. It's the neuro psychologist's job to lend practical meaning and a purposeful approach to my therapy in response to the tests, and all he would say offhand was that my numbers dropped significantly from when I did the first test to when I re-took the first test 45 minutes later.
MY job while waiting for his official write-up is pretty much to remember this quote I got from Woody Haiken, one of those Life Coach Dudes: "We are exactly who and what we should be in this exact moment. We ARE perfect. If there is something that we want to change, then it is not an imperfection, it is a detail to be refined."
I can live independently, but I may have to have a little help with some of it.
And I never liked the "Think Fast!" game anyway.

Best Way to Keep a Secret is to Forget It

As you may know, I had the family meeting at the brain rehabilitation center this morning.

These meetings are SO uncomfortable, because each therapist takes turns around the table looking me in the eyes and gravely informing me of what we've already done and what we are going to do next, which feels condescending considering that I know what we've been doing, but one of them explained to me once that they do this for Thea's benefit, but then they direct the information at me so that I won't feel as if they're all  just talking about me over my head.

But people are all looking at me in these meetings, working out in their minds how I'm reacting to what everyone else is saying. Add to that Occupational Therapy and Independent Living to discuss, and it just got doubly embarrassing. 

For one thing, nobody on staff realizes how good I make myself look. I mean, I'm not trying to trick anyone by any means, because that wouldn't help me, but I try to do my best and put my best foot forward, and that's apparently created a great deal of difficulty from a therapeutic standpoint. I'm saying I'm fine and acting like I'm fine, but I'm beginning to get the impression that I'm not quite so fine as I've thought.

My neuralpsychologist has been telling everyone from the get-go that according to his tests I needed Occupational Therapy sooner rather than later, but things got all messed up when the insurance company began independent evaluations and the brain rehab went all feudal defense mode on me. 

Their reaction was in response to the auto insurance company denying me a case manager to help coordinate all the necessary services. Afraid the rest of their therapy wouldn't be covered, either, they simply told me that they'd do what they could to squeeze a little occupational information into my other therapies to help me out, but they also were all telling me "Occupational Therapy? Nah! You don't need that -- That's for people who are much worse than you!"

The doctor, meantime, continued to push for occupational therapy based on his testing results -- You know, because he presumed that three PhD's, a couple of Master's Degrees, and thirty years of experience from a highly qualified expert just might actually mean something. (He's somewhat of a Renaissance Man -- He's also a pilot, and likes to drive race cars, among eclectic other hobbies)

Without a case manager everyone just kind of dropped the ball. The doctor didn't get letters to people on time,

when a case manager would have badgered his office until they did. The brain rehab has randomly thrown various types of therapy at me based on my more obvious symptoms, and they didn't have a case manager to observe my situation to ascertain what therapies I still actually needed. Additionally, a case manager would have made certain that Thea and Paul got the attendant care and replacement care, which is funny because initially when Paul asked about it at the first family meeting they all acted like it was an unreasonable request, but now suddenly everyone is shocked that someone didn't see to that right away. A case manager is really just a sort of go-to person who makes sure all the records flow smoothly and the therapy is handled most efficiently. 

Coming toward the end of the meeting,  the Care Coordinator  said that since the Insurance Adjuster, is now much better educated on my case and being more accommodating, he's going to try again to put in for a case manager. "Obviously having one from the beginning would have been more beneficial," he said, "But it's still going to help a lot with keeping track of the OT-related and work-related therapies."

So they were all apologetic and embarrassed, and then I was because they took out my sister's list and started asking questions about day-to-day things at home with the idea of transitioning me into housing. 

"And what's going on with this assisted living thing?" my sister asked. "My sister doesn't communicate well at all anymore. I only get part of an explanation for anything. She just came home from vocational therapy one day last week and was like 'I'm moving out now!'"

Everyone laughed at the way she said it, and my face started feeling really warm. "I didn't say it like that! -- Did I?"

"But you did," she said.

"Well, geese, I'm pretty certain I didn't use the term assisted living --Isn't that for elderly people?"

We are quite the song and dance show, she and I. Everyone laughed again, and the Vision Therapist cracked, "That's right, Heather -- We'll have you out playing shuffleboard in no time."

But my sister was on a mission, and would not be deterred: "I still have all these questions about whether or not that's a good idea, or how it's even going to work, because either she didn't think to ask these questions, or she didn't remember to tell me the answers."

"Well," the Vocational Therapist, "That will have to be determined by the OT testing. Provided your sister Qualifies for OT, there has been some talk of getting her into transitional housing."

"It would help to answer a lot of these questions that you emailed us before the meeting," the Care Coordinator added. "Before we can move on that idea, there will need to be some more evaluations by the OT, but the goal would be to get your sister out on her own again and see what she will and will not be able to do. Once we have a clearer picture of what areas she needs to work on, and have provided the education and support necessary, we would be able to gradually back off and let her go back to living her life."

"In the meantime," the Vocational Therapist put in, "the job at the call center is still in its infancy. We haven't got all the accommodations in place yet, and it's going to take some time to get enough data to see what she's really capable of. That said, we're only looking at about another three months of vocational therapy."

Three months is all the time they think I'm going to need to figure out what to do with the rest of my life?!

Back down, -- Don't catastrophize it, and don't assume you've got to have everything all figured out at once...

"Right," said my sister, "I've got a question about that: Am I right in my understanding that Heather is never going to be able to work full time again?"

I broke in with "No! Over time, I should be able to get back to teaching again, right?"

"I'm only repeating what you've told me," she said defensively.

"I didn't say that -- did I?" I was focusing on her face and feeling too mortified to turn back toward the rest of the table, but as soon as I felt my time spent in that position getting conspicuous, I made myself look back at everyone else, particularly the Vocational Therapist across the table from me. "I know I can't go back to teaching full time right away, but I am going to do that eventually, aren't I?"

All of a sudden nobody was looking at me anymore.

The therapist shook her head at me, and as she did so everyone else started kind of shaking their heads, too.

"I think you need to start accepting the fact that even if you do start teaching again, you're only going to be looking at part time work. It doesn't always have to be as few as twenty hours; it could be as much as thirty hours, but you need to be realistic about what kind of a job will be a good fit for you. You're going to have to settle for something much more simple, that isn't so taxing on your brain that you end up too exhausted to function properly."

I stared around at everyone, then put my elbow on the table and rested my head against my hand, looking down mostly just to conceal part of my face by my hair so I could feel less exposed for a minute. 

The psychologist in residence for the brain rehab, went down my sister's list and asked her some clarifying

questions. I suddenly understood why they always look me in the eye and address me directly about all the information we've already gone over, as opposed to looking at and discussing it with her -- Once the spotlight was off me and they were talking to her about things, I felt as if I were sitting at Parent-Teacher Conferences with Mom having all the people around me talking about my behavior and overall performance -- Worse, it felt more like when I was specifically sitting in on a conversation with any given one of my math teachers -- "Well, Heather appears to be very bright and she is working really hard, but for some reason she just isn't quite hitting the mark. So long as she just keeps asking questions and giving it her best shot, I'll give her a 'D,' as opposed to giving her an 'E' and failing her altogether..."'

No joke -- Every teacher who has ever taught me math as far back as the first grade -- and I've got report cards to prove it. ha hah

I listened to part of of the list and tried to understand exactly what has happened to my life. It seems so surrealistic, that I could be in a room full of people who were basically telling me that the life and career that I've been working so hard for so long to achieve for myself is simply no longer possible. I've spent so many years planning on that permanent teaching job and believing that if I worked hard and didn't quit, I could accomplish it, I don't know how to keep putting one foot in front of the other without that finish line in place. I was having a hard time wrapping my head around that in and of itself, and yet at the same time I had to struggle to focus on the conversation going on just over my head so that I wouldn't continue to be in the dark.

 List of Things That Have Changed Since I Was In the Accident/Since I Started Back to Work:

1. I struggle to keep in touch with my children's teachers and with making sure they're doing their homework.
2. I have a harder time getting the to mind me, and often if they get overly emotional I go overboard right along with them instead of being adult and taking charge of the situation.
3. I'm inconsistent with my rules.
4. When they come over they really trash the place, and I never seem to get around to having them clean up after themselves before they leave.
5. Then I never get around to cleaning up after them after they're gone, so things have really piled up and gotten unmanageable downstairs.
6. I'm very inconsistent in doing my chores.
7. I'm having a hard time budgeting.
8. I'm not keeping up with my laundry
9. I keep forgetting to take my medications.
10. I say I'm going to do something but then I get distracted and start something else, and then I get distracted and I start something else, and then I get distracted and I start something else...
11. I'm not keeping up with my yoga or taking my walks. (And you know, this type of inactivity is usually attributed to depression, but I've been feeling far from depressed. Near-death experiences can sometimes do that for you, I guess. I mean, where there's life, there's hope, right?)
12. She speculates on how I would do with planning meals for the week, getting groceries, and cooking. I think she's taking this to an extreme, because I do cook -- I've baked things for her and helped her with dinner. Frankly, I offered from the start to make some of the meals, and I made a list of things I would be happy to cook for everyone, but then they complained about the price of the ingredients (even though the kinds of things she buys and makes are mostly gourmet items) and eventually I stopped offering. The one time I did make a meal for everyone, no one liked it. And it's not like she asks me if I would please cook dinner. She told everyone at the table that unless she cooks breakfast, I won't eat anything but toast (What's wrong with toast?) and that when they went on vacation last summer and left me to my own devices, she has no idea what I ate the entire time (I think because I hadn't cooked very much of the frozen vegetables they left me, she assumed. I actually do have some friends around here who were happy to keep me company while they were gone, and that included eating out a couple of times. It's not like I was starving myself or living on only cheerios or potato chips).
13. She worries about how I will get around, and pointed out that even if I were to get enough money saved to get myself a car, they're still going to be stuck picking up my kids because I won't be able to drive long distances (neural fatigue = accident)-- especially not with my kids in the car because of the distractions. And she's not being too hard or unreasonable on me, because these are the driving restrictions they plan on holding me to when I get back on the roads -- No radio on, no passengers talking to me, short trips only, no freeways, no heavy traffic hours --- It's such a long list, I'm not sure if I actually Can drive again or not!
14. I used to have set rules and routines and structure built into my plans for my children on the weekends, and now I can't seem to think that far ahead.
15. She wonders how I would do by myself with my kids, and what I would do in case of an emergency. I know what to do in case of an emergency!

"Well, are you afraid to leave her alone with the kids?"

"No, well, it's not like she's alone with them for long -- just about five hours on Sunday afternoons, because we go to different churches and then I come home and drive the kids back to their Dad's house,"

I felt really stupid listening to all this conversation going on around me, because some of it seemed absurd and entirely false, but so much of it seems almost as if it might actually be true. I'm starting to second-guess my own perception again -- mainly because of the direction this conversation headed in. These were all things I used to be good at once -- Even sister said so. (The "Bad" list was longer than fifteen items, I just don't know what all it had on it -- She never shows these things to me, and no one else is letting me in on the big secret, either. Or if they did, I just don't remember. Today, anyway. Maybe I'll randomly remember tomorrow. It's a horrible feeling when your own mind suddenly can't be trusted anymore. The doctor says that it's because of the specific area in the left side of my brain that's damaged. For months he's been pointing out that I've got roughly the same injury as Randy from the TBI Support Group -- Randy who reminds me of my eleven-year-old, who refused to listen to the doctor and get therapy, and instead went right back to work, Randy, who every week bemoans the fact that he'd thought he was "good to go!" and didn't know for years that his odd behavior that everyone was covering for at work was actually related to brain injury-- until it was too late, and he messed up so badly that he lost his job. As my sister keeps warning me: "Don't be a Randy!")

I was still trying to work out in my mind what they had been saying before they started reading the list. "Wait a minute, though -- I feel like I've been keeping this great big secret against -- myself? I mean, I don't understand what's going on. Why are we talking in terms of me having -- What? Like a job bagging groceries or something? The Doctor said that I could go back to teaching someday."

Thea shook her head at me. "You said that the last time you saw him, he was eluding to you getting part-time work. Remember? You came home and you told me that yourself." She looked across the table at everyone else and said apologetically, "She gets really excited about getting back to work and having a full time job and a car and being independent -- so much that she'll come home telling me that she's found the perfect job online, or she's going to go to the school and see if her friend Julie could help her get some kind of a job, or maybe she could teach online --" She shrugged, "And I don't mean to be a Negative Nellie, but I always find myself saying, 'No, you can't do that anymore --' and then she'll be like, 'Oh, yeah. Right. That's right. I can't do that because of this --' and then she'll go to her Tuesday night meeting and come back and say, 'The doctor said that I can't do this, and this, and this, and this is why!' -- And it's like the same thing I just told her, but it's like she keeps forgetting --"

I laughed self-consciously because I've been getting glimpses of this problem myself in the past couple of weeks. "I asked the Doctor about that this past Tuesday, and he told me to write up a description of my goals and the steps I need to take to reach them so that I can read it every morning (and I did so -- It's right here on the wallpaper of my laptop although occasionally I find myself altering it a little) -- I just get confused, because I feel the same on the inside. It's frustrating, because I know what I can do, because I've done it -- I've overcome so many obstacles in my life, and I've done it by just pushing ahead and not giving up --- I'm not quitting --"

"No one is saying that you are," assured the psychologist. I knew no one was saying that.

The Vocational Therapist said gently, "You know what you used to be able to do. You don't know yet what you can do, and you can only wait and give yourself the time to figure it out."

The Care Coordinator asked if I was getting in to see my counselor next week, and if I was starting PTSD

counseling soon, both of which were an affirmative. He said they're going to have to get me a case worker for sure to help me keep things straight, and I gathered the counseling question was his way of addressing the fact that I'm unable to accept reality from moment to moment. And I think I've given you the highlights of the meeting, anyway. It ran from 9:15 to 10:50, Thirty-Five minutes to tear down my life and make vague promises of refurbishing it. Or not quite so vague, I suppose -- I know that I might get help from a caseworker, and that when the Occupational Therapist is done with her testing of me, talk will begin of what steps I might be able to take next.

I'm having such a hard time accepting this idea that I can't take care of myself and have a full time job -- I'm used to thinking happy thoughts, faking it 'till I'm making it, working hard and expecting it to pay off. Now for the first time I'm seeing that in my new life hard work is somehow the opp

osite of what I'm supposed to do. It's like some kind of surrealistic paradox that I'm trapped in. I don't want people to feel like they've always got to take care of me. The brain rehabilitation center's goal is to help me be independent again. I need to continue to hang on and wait to see what that's going to look like before I start dreading it.

I need to -- what? 

Have faith.

All I know for sure is that I've got to have patience, and maybe to stop measuring my worth by the amount of money on my paycheck.

It's just scary because I don't want to spend my whole life struggling to make ends meet and not being able to help my kids get basic things that they need.

I want to crawl into a cave and sleep for a few months, but naturally I can't do that. I don't quit. I won't quit.

My boyfriend is planning on sitting in at the next meeting so he can help me keep track of the big picture a little bit, or remember to ask questions to help me figure all this out. I keep forgetting what I want to say and what I want to ask when I go to those meetings. I'm thinking having a social security/disability attorney for a boyfriend just may come in handy.

Seriously, my life feels like it needs to play on the Lifetime network -- Do they still have the Lifetime network? I haven't had cable in a very long time. ;-)

On the random bright side, I decorated my cubicle for the contest at work and everyone has been super impressed by how lovely my Japanese decor is looking, so I think I just might win! Calls were back to back today, but at least I had a pretty cubicle to look at while I was being exhausted and easily confused. My Team Leader is a really sweet, motherly woman whom I like a lot. I really love this job, and she was telling me how she started part time just as I am, and that gradually she worked her way up in the ranks -- She's been there for five years, and done just about every job available. I hear the benefits are nice, and I already know that the work environment is excellent. 

I guess part time work isn't all bad -- I can use the extra time for painting, once I've gotten my schedule all straightened out. It's all a matter of being very well-organized and disciplined -- those are the keys to my success.

I may have already misplaced them.

Keep thinking of me. I run on positive feedback and support these days -- and just sheer stubbornness as well.