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.
“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.
