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| 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.
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
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.'"
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
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."
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.
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