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:
- I struggle to keep in touch with my children's teachers and with making sure they're doing their homework.
- 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.
- I'm inconsistent with my rules.
- 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.
- Then I never get around to cleaning up after them after they're gone, so things have really piled up and gotten unmanageable downstairs.
- I'm very inconsistent in doing my chores.
- I'm having a hard time budgeting.
- I'm not keeping up with my laundry
- I keep forgetting to take my medications.
- 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...
- 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?)
- 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).
- 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!
- 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.
- 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.
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