A few positive steps, some Marcus Aurelius quotes, and I’m good to go

"The happiness of your life depends upon the quality of your thoughts" - Marcus Aurelius
“The happiness of your life depends upon the quality of your thoughts” – Marcus Aurelius

I got a good night’s rest, last night. Not as much sleep as I was hoping to get, but at least it was something. I’ll take a nap later today, when I am done with my volunteering… before I start the next “leg” of my day’s activity.

Life is filling up again for me, and in a good way. For a long time, my weekends were all about serious downtime – I am pretty much done by the end of the week, and Thursdays and Fridays are often a “wash” for me, as I muddle through the final 48 hours of exhaustion before my weekend.

But this weekend, I’ve got a lot going on – especially with the house. My spouse and I walked through our downstairs, yesterday evening, and figure out what we want to do with all stuff we’ve accumulated over the past couple of years. We both have executive functioning issues, having trouble with initiating activities, figuring out next steps, and following through. So, we end up with a lot of stuff stacked in piles, waiting for us to figure out what we’re going to do with it.

We’re not dirty. Just disorganized. And last night, we started doing something about it. We figured out what we need to do with the living room, so we can actually sit in that room again and read quietly in peace. It’s the quietest room in the house, and perhaps the most comfortable, but it’s not where the computer and the t.v. are, so we don’t spend much time there.

We also figured out what to do  with the dining room. We don’t actually use it for dining, much — we eat in the kitchen or in front of the t.v. at night — and we haven’t had company over for months and months (maybe years). So, we rarely use it, except for like right now, when I’m sitting down to write and drink my morning coffee. It’s become the place where I work while I’m waiting for supper to cook. I can hear it, if the food on the stove starts to boil over, and I can get to it much quicker than upstairs. My spouse used to keep an ear out for any spills on the stove, while working in the next room, but they’ve not been able to do that as well, in the past couple of years, so now I write and work in the dining room, while they’re working in the great room next to the kitchen.

Also, that great room — the one with the nice view of the western sunset and the fireplace, which is our sanctuary, the main place we “live” in the house — that’s slated for some changes. We have been talking about doing things with that room for quite some time, but we never seem to get moving on it. Well, now we are. We’ve got a plan. And today after I volunteer, I’ll be stopping by the local home improvement center to pick up some containers to store our stuff… and move it out of our living space.

I also need to move some stuff we’ve been storing in the dining room to where it really should be — the attic, as well as the garage. I did a massive re-org of the basement, a little over a year ago, which helps, and now it needs to continue as Phase II. Or III. Or whatever number we’re up to, by now. There’s stuff I can also move from the basement to the attic. The attic gets cold in winter and hot in the summer, so whatever I put there has to weather those elements. I’ve got some stuff I can move there.

I’m also considering getting rid of that old bicycle I have in the basement. It’s not a very good one. It has a wobbly wheel, and it might not actually be that safe to ride. It’s also a three-speed, and you can probably guess how that goes, when I’m out riding up and down hills on that thing. I may keep it around, because it reminds me of my Dad’s old bike, and it also harks back to days gone by when our needs were so much simpler.

I just need to move it somewhere that makes more sense. Maybe get some of those hooks and hang it from the rafters in the basement.

Anyway, the long and the short of it is, I’m feeling a whole lot better now than I was yesterday.

Just getting moving and doing something useful with myself — getting active, breaking up the rut I can fall into — and not getting so stuck in my head… that seems to be the key with me. Just taking action. And also getting my spouse in on the action. We both need to keep active and engaged, and we both need to live in a house that’s comfortable. I work so hard, each and every day, to keep this house and have a good life here. Why not make the most of it?

I lucked out, this morning, as I was surfing the web while riding my exercise bike. I stumbled upon some Marcus Aurelius quotes, which always bring me back to my senses. I have always really liked his “Meditations” – which you can read for free here at Project Gutenberg. Some of his language is hard to decipher, but there’s enough good in there, that it makes it worth it to sort through.

Marcus Aurelius was a Stoic Roman Emperor – and Stocism is about being able to be truly happy, when all the rest of the world is falling down around your ears. It’s not about “sucking it up” and squelching all your unhappiness down inside you, but rather getting used to life sucking big-time and being happy in spite of it. Regardless. Recognizing the pain and discomfort and difficulty, but not letting it wreck your life. That’s my kind of philosophy.

I’ve always been a Stoic, at heart — from when I was a kid, training myself to not cry or show emotion or get caught up in feeling sorry for myself, when I got hurt. In many ways, that worked against me, especially because it kept others from seeing my difficulties, so I couldn’t get any help. But my shortcomings in how I practiced Stoicism were because I was a kid, and I had a child’s understanding of it.

Now I have an adult’s understanding, and with everything happening around me, lately, it’s important that I use that understanding again. I have come back to Stoicism, time and again, but I always seem to lose track of it… just forget about it. I lose track of things, if they aren’t right in front of me, and that’s a problem. So, I think what I’ll do is actually make a little booklet of them and carry them with me to read. I can do that by saving a document as a PDF and then printing it out. Or, I might just pick a quote to think about for a day or a week, or longer. I have quotes saved to my desktop, so I can look at them anytime.

I really need to get more down-to-earth, as well as not let things bother me, so the words of a long-gone Stoic seem about right to me. I think they can be helpful for others, too, so I’ll write more about Stoicism here, in hopes it will help others be happy, no matter what’s going on.

A lot’s going on in the world that’s just awful. Terrible. Painful. Small children being killed, each and every day, in a war that makes no sense to me. Some wars make sense, but the whole Syria thing… I just don’t know. Anyway, I don’t want to get political here, just say that I see the pain and the suffering, and I wish – how I wish – it would stop.

In the meantime, I can take care of my own state of mind and not let myself be hobbled by all that other stuff. I’m not turning a blind eye to it. Far from it. I’m just also taking care of myself, in the process. And being happy, despite everything falling down around me and being excruciatingly painful, is the kind of skill I need to develop. Because things aren’t going to get any easier, anytime soon.

Ah, well.

Onward…

Good to be back to my routine

clock on the side of a building with skyscrapers in the background
Keeping on schedule makes my life manageable

It’s good to be back to my regular life. As much as I like vacations (especially ones that involve nice weather and the beach), I really love my daily routine. It centers and grounds me, and it keeps me sharp… because I don’t have to figure everything out as I go along.

It’s predictable. It’s familiar. I can do it (metaphorically) with my eyes closed and my hands tied behind my back. I complain sometimes about feeling so trapped in my routine and daily rut, but it’s actually the thing that keeps me stable and chilled out.

My vacation was actually pretty stressful, in some ways. I wasn’t on my usual schedule of getting up, riding the exercise bike, eating my scrambled egg, then settling down with my coffee and banana to blog or read or chat online with friends there. There was no getting ready for work, driving down the road and thinking about things or listening to music, and then spending a day in my cubicle working on data “stuff”. It was more “free-flowing”, with my spouse not feeling very well and needing some sort of attention on a regular basis.

I had hoped to spend some quality time thinking and working on some of my projects, but that didn’t happen. My spouse was not only sick, but also very anxious. About everything. And that put us both on edge. I got pretty resentful at times, especially when I was interrupted in mid-thought. But I kept it together and did not snap out more than a few times.

I did break down in private, mid-way through the week. I just felt like I couldn’t take it anymore — the constant barrage of needs and demands and having to jump up and change gears at a moment’s notice. I was really, really tired, and I wasn’t getting enough sleep. It’s hard for me to sleep in other people’s beds, in rooms without blackout curtains. I had a sleep mask and earplugs, but it wasn’t the same. And it was either too hot or too cold in my bedroom, so that was hard, too.

Still and all, it was a good break. And it taught me a lot about myself, as well. I need to take really good care of myself, especially as I’m caretaking for a spouse who’s declining in terms of cognition and behavior. They’re getting on in years, and it’s finally catching up with them. We’re a generation apart, actually — and up until the past few years, it’s worked in our favor. I’ve always been attracted to older partners, and I’ve always been mature for my age, so it’s never been a problem. But when your partner starts to get “up there” in years… starting to seem downright elderly… and you’re just entering your real prime of life, well, that’s a complicated path to tread.

It’s a management issue, really. I need to manage myself more effectively and do a better job with my own self-care. It’s like I’m a vehicle pulling a very large wagon, and I need to keep my engine tuned and my gas tank filled, so I can do a decent job at this caretaking business.

Because it’s not going to get any easier for me — or for my spouse.

And the task at hand is for me to keep my act together, so we don’t both suffer. When I don’t keep my act together — don’t get enough rest, don’t eat right, don’t exercise, don’t manage my emotional state, don’t manage my behavior — and I just let everything go, because I’m tired of dealing with it, that’s not good. It makes everything worse for everyone involved. And then I need to pick up the pieces and patch things back together again.

If I can.

Some people have told me I need to cut my spouse loose. They told me that, back in 2007, when they were first having a big set of neurological problems. They told me I needed to leave. Get on with my life.  Put them in a home (?!). Not let their situation hold me back.

Needless to say, I did not do any of that. And I was really offended that they would suggest that as an option. As if I were the sort of person who just gives up on other people. I don’t. Especially my spouse, whom I love with all my heart, and is every bit as much a part of my life as my arms or legs or brain.

I’m not giving up. It’s not going to be easy, and none of us will get out of this alive. But for the time being, I’m sticking with it, hanging in there. and I’m putting the focus on taking care of myself, so I can do the best job possible as protector and provider for the amazing, beautiful life we have together.

That’s that. End of discussion.

Which means I need to take care of myself with routine, schedule, and doing as much as I can to keep my foundation stable. Life will throw what it will at us. It’s our choice, what we do with it. And I choose to move forward to the best of my God-given ability.

Onward…

Step by step… putting things in order

files and papers stacked in two columns
This is much more organized than I am … or may ever be

I had a full and busy weekend. There was a bunch of stuff I had to do for work on Saturday, since I was out all last week. And yesterday was about just getting myself back in the swing of things. Cleaning up, organizing, putting stuff back where it belongs. And getting some rest.

I got a good nap in the afternoon, and I also got a lot handled for some of my projects I’m working on. I also caught up on my correspondence – I still need to call my parents back, though. They called before I was leaving to go out of town, and I didn’t feel comfortable calling them, because they had wanted to go on a week-long vacation with me and my spouse, and we told them, “NO” because I didn’t have any extra vacation time… because we were already taking a week on our own. My parents get jealous and hurt, so rather than let them down (or lie to them, which is extremely difficult for me), I just didn’t call them back.

I’ll need to do that sometime this week. And talk about fall house repairs. Because that’s what I’m up to, these days.

I feel pretty good about the few things I did on Sunday morning. I cleaned a little bit, and I reorganized a room we use for storing stuff my spouse uses for their business. I also did some research on storage units, and I found a facility that’s a few miles from my home that has some good deals. I need to stop by their location on my way to work, sometime this week, and check out what they’ve got.

I also need to organize my workspace in my own study. It looks like a bomb went off. But it’s a happy, creative bomb. Still, I need to move things around and make a larger space for myself to move. I have trouble remembering that things exist, if I don’t see them in front of me, so there’s always the danger of losing track of important ideas because they’re hidden from view after I organize. I need to figure out how to handle that.

This is all a process, of course… A big, long process that never actually ends. The good thing is, it’s very satisfying for me, so I don’t mind it terribly. It’s just a constant thing, that I need to keep up with.

But when I do keep up with it, it feels great! So, that’s what I’ll do. Simply keep at it, steady on…

Steadily… onward…

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

Easy does it… sometimes, but not all

construction site nighttime scene cranes and lights
Downtime is time for me to get to work – Photo Credit: Pixabay

Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.

I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.

My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.

I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.

I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.

There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background  or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.

If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.

We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?

Why not indeed?

Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.

I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.

Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.

It was a boon in disguise.

I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.

And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.

And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.

So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.

I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.

So… onward.

Extra sleep – the key to my future plans

brain-interests
Roughly – this is how my thinking has been prioritized

I keep sleeping in past 8 a.m. This is new, since I returned from my business trip. This morning, my spouse had to wake me up at 8:15, asking if I was planning to go to work today.

Well, yes, I had planned on it. But if I don’t have to do it, so much the better😉 No, really, I hoisted myself out of bed, did a shortened version of my morning exercises, and made my breakfast. Now I’ll do a quick post before taking off for the office.

I got 9-3/4 hours of sleep last night. I think that’s a record, of late. The last few nights, I’ve been sleeping from 10:30 till 7:45 — even past 8:00 — which has been putting me at close to 10 hours, for the past three nights.

And I didn’t even realize I was that tired.

I guess it’s all catching up with me — and not only from the business trip last week, but from the past 10+ years of grappling with sleep issues. I’ve been exhausted for so long, I don’t even know what it feels like to be fully rested. And my neuro thinks that it’s one of the root causes of my dizziness and lack of balance. My old neuropsych said that sounded “preposterous”, but if the brain is in charge (at least in part) of your sense of equilibrium as well as coordinating your movements, and your brain is tired, then doesn’t it make sense that a tired brain would lead to an un-balanced body / proprioceptive sense?

That seems common-sense to me. But I’ll let them fight it out on the experts front.

As for me, I’m actually sleeping, and while I do wake up during the night many times, I’m able to get right back to sleep and stay that way… and for 2-3 hours longer than is typical with me. It’s either that, or take a sleeping pill, which has been shown to cause rebound insomnia and is strongly cautioned against for people with brain injury. Now, that apparently happens after extended use, but even so. Why chance it?

Plus, not everyone metabolizes it the same way, so saying it’s benign in every single case — especially mine — is pushing it. And that’s beyond pointless. And a little worrying.

But on the bright side, my own situation is worlds better — at least for now. I may have to start setting a clock to wake me up by 8:30, if I don’t wake up, myself. I’m accustomed to waking up at 5:30, but I can do with out that, for sure.

Aside from the jet-lag and time-shift that came with the business trip, I think another thing that’s really helped me relax and sleep more, is taking some concerns off my plate. I’ve decided I’m not going to go back to school to finish up the B.A. I failed to get, 30 years ago. I was in trouble with the law, I was in trouble with my family, I couldn’t stay steady with anything I was doing, I was with a bad group of people who were very self-destructive, I was out of money, and I was too booze-addled to make good decisions. Finishing my degree just wasn’t possible.

My current employer pays for both graduate and undergrad education, so this would have been the perfect opportunity for me to finish my degree. But let’s be honest — there is no way I can hold down a full-time job, take care of my spouse, and take care of my own health, AND go to school, even part-time. Even doing one course, would be too much for me. Two to three hours of classes a week plus reading, plus studying for tests… with my learning differences, and my crushing fatigue… there is no way that could work.

So, after having this bright hope that I might be able to do it, I let that go a few weeks back. It feels like a surrender of something I’ve wanted with all my heart for so many years, but it just doesn’t make any sense. If I ever find a way to support myself that doesn’t involve being at an office and constantly dealing with people for 8-9 hours a day (and beyond that, considering all the emails and texts that come in at all hours), I’ll consider going back to school. But not if it puts me in debt. And not if it destroys my quality of life.

The wild thing is, ever since I let go of that plan/dream/ambition, I have felt so much more relaxed. Yes, it’s a loss. Yes, it’s disappointing. Yes, I kind of feel like I’ve failed. But this frees up that part of my brain that has been connecting my future success to the way I was always taught I could succeed – through getting degrees and adding qualifications and certifications that come from others.

As it turns out, I realize that I really am on a different path than that. I belong on the frontier. My great-great-grandparents were pioneers who traveled to the West when it opened up, and they paved the way for others to follow them. I’m actually not happy about some of the things they made possible — the Dust Bowl, rounding up Native Americans and putting them on reservations as well as genocide against this country’s first residents. That’s a hard legacy to carry. But at the core, at the center of it all, I am essentially a pioneer, not someone who settles spaces that others have opened up. And I’m the kind of person who thrives in unstructured environments where the rules have yet to be written.

brain-interests-new So, I’m freeing up my “brain space” to make room for my new work direction. I’m making the most of my current job stability to really think about where and how I want to work in the future. I’m not rushing out to find a new job, right now, because I need time to think and really get clear about what I want to do. After years of hard work and sacrifice and doing a lot of jobs that I didn’t want to do because they were good experience, I’m finally at a place where I can literally pick and choose the direction I want to go in. I have the experience that others really, really need, and after years of rehabbing with a neuropsychologist, I once again have the temperament and behavioral control to work effectively with others.

I was this close to being able to do that, back in 2004, when I fell and got hurt. I was 18 months away from cashing in on my shares, that would have let me pay down my house and refinance the remainder at a very attractive rate. I was 18 months away from financial independence, which was no small feat for someone without a college degree, who everyone said would never get far in life because of my failure to complete pretty much anything I started. I could see the light at the end of the tunnel, and it wasn’t an oncoming train. It was my future – the future I had worked so hard for.

Then I fell, and everything fell apart.

I’ve been rigidly locked onto the idea that I had to finish my degree, in order to get anywhere in life. But in fact, that falls back on thinking from when I was a teenager. As an adult, I’ve always been a pioneer, a leader, someone who ventures into spaces that haven’t yet been explored. The things I’ve done, have been things that nobody else thinks are possible.

But I know they’re possible, as do the others I work with.

Now I need to look again to the future and find where I need to be. Not just where I am right now, but where I need to be, on down the line. I want to make the best of everything I’ve got, and take it to the next level.

And so I shall.

Onward!

Holy smokes, it’s amazing what some extra sleep will do for you…

Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Oldie but goodie – Brain Injury Rehab Ideas from Harriet Katz Zeiner

I came across this several years ago, when I was traveling and needed to fill my mind with things other than overseas business. I enjoyed it (still do) and hope you do, too.

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Tutorials for dealing with TBI

Dealing with TBI takes a team effort

Dealing with TBI can be hugely confusing and frustrating. There is so much information out there – some of it conflicting, some of it duplicated, a lot of it outdated (and never updated on the web, because people stop updating their web pages). So, finding useful information that cuts to the chase, that’s practical, and offers more than just a marketing promotion can be a challenge. Fortunately, there are such resources out there. Project LEARNet is one of them.

Project LEARNet, which is “A Resource for Teachers, Clinicians, Parents, and Students by the Brain Injury Association of New York State”, has some great tutorials on Common Issues for students after TBI. Don’t let the focus on kids / students deter you – these are great resources for anyone who is seeking to better understand TBI. Check out the tutorials here. They are downloadable PDFs that you can print and take with you – great stuff!

All Project LEARNet Tutorials
1. Assessment Issues
2. Cognitive/Academic Issues
3. Self-Regulation/Executive Function Issues
4. Behavioral Issues
5. Social/Emotional Issues
6. Family Issues
7. Physical/Medical Issues

It is so rare to find a concentration of truly helpful information in one place. Also very useful, for anyone seeking to better understand TBI, is their page on Problems Seen after TBI. You can read about them here and then follow the links for more information and specific tutorials. They cover many different bases on their “Problems Seen” pages – general medical possibilities, cognitive/self-regulatory, behavioral, and social/emotional possibilities for the source of the problems.

If you’ve got these issues – or you’re dealing with someone who does – this is a great place to start.

Again, don’t let the focus on kids/students dissuade you. This is good and useful information and it can be of great help to just about anyone trying to figure out WTF?! after TBI.