A few thoughts on light and enlightenment

Over at my Tough Boy Initiative I read the following about research on sensitivities after TBI

This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe – just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I’m out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.

Dr. Tosta stated in her research:
————
Dr. Tosta stated in her research:
It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.
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I’ve been thinking a lot about anosognosia, lately, and this is in keeping with my current theme.

While it may be true that the overwhelm of dealing with TBI prevents us from identifying the challenges, there’s another aspect that lots of people don’t mention: a condition called “anosognosia” — basically, Latin for “not knowing there’s a problem”.

It’s a very interesting phenomenon that’s common in stroke survivors and severe TBI survivors, but in my case — a series of mild TBI’s — I can definitely tell it’s caused problems. You literally do not know there’s a problem with your processing. Other people can tell, but you can’t. Some people don’t even realize their one side is paralyzed. You can read more about it at http://discovermagazine.com/1995/may/thebrainthatmisp502 which is an article I really enjoyed.

So, while overwhelm may be part of it, there’s a cognitive aspect, as well. Dr. George Prigatano has written a great deal about this phenomenon, and Google Books has a pretty complete version of a book he contributed to: “Awareness of Deficit After Brain Injury” By George P. Prigatano, Daniel L. Schacter — you can read most of it at http://books.google.com/books?id=xze89PCLaWMC&printsec=frontcover&dq=Awareness+of+Deficit+After+Brain+Injury&client=firefox-a&sig=ACfU3U0fGDNZyDxdkuBwr4jzLwJ8_MoyGQ

It’s some of my favorite reading, these days. I feel a lot less insane/deficient/incapable, when I realize that the problem is not with ME — it’s with my brain 😉

My catalog of injuries (that I remember)

Below are the head injuries I’ve realized I’ve had over the years — I’ve “narrowed” the list to ones that I recall affecting me – i.e., after the event, I was immediately dazed and confused and/or I noticed significant changes in my processing, moods, behavior.

Childhood Injuries

Fell down the stairs @ age 7

  • I fell down the stairs of our house — about 10 stairs, not very steep
  • I remember standing at the top of the stairs, then I was at the bottom of the stairs, and I couldn’t figure out how I’d gotten there
  • I got up and went to stand in the middle of the dining room near the bottom of the stairs
  • My mother heard the racket and came in to see how I was, but I wouldn’t let her near me.
  • All I could say was, “It was me.”
  • I remember being very dazed and “out of it” for a while, then I collected myself

Hit on the Head with Rock @ age 7 or 8 (1972/73)

  • I was struck on the head with a rock thrown by some kids from a nearby neighborhood
  • struck on the right side, near the top, behind the hairline
  • I remember being knocked out/coming to with my sister hovering over me crying
  • We went home, and Mom and Dad saw to me
  • they checked to see if I had a concussion – they got help from a friend who was a nurse who told them what to do — get a flashlight and check my pupils
  • they had me lie down and made sure I did not fall asleep
  • I laid on my left side, so I believe the bump was on my right
  • I think I was restless and didn’t want to lie down… but I also wanted to sleep
  • I remember them looking me over to find the bump
  • I tried to hide my injury from them
  • I was very confused and upset with myself for causing them concern
  • I didn’t get any medical attention
  • My memory immediately after that is sketchy — very “Swiss cheese-y”
  • I think that I may have gotten glasses after that
  • I was looking up at the moon and it looked like it was double
  • I told Mom and Dad and they got very nervous and agitated

After that, I became increasingly aggressive towards the kids I walked to school with, teasing and taunting them. I remember wondering why I was suddenly being so mean to them, and wanting to stop myself, but I couldn’t. I became increasingly withdrawn, I had increasing trouble in school (thinking and interacting with other kids), I got kicked out of my gifted students class for being disruptive, and my 4th grade teacher called me “Crazy ____-zee”.

I was always very physically active, when I was a kid, and I had a lot of falls and bumps while playing

  • It was not an uncommon thing for me to bump my head while we were out and about
  • in the woods playing, hiking, climbing
  • skating, falling on the ice
  • playing ball and getting hit or knocked down
  • I never thought anything of it — I just got back up and kept playing

Other childhood falls/injuries that I can remember:

Age 8 -11? Not exactly sure when this was. Fell off a running horse at camp, not sure if I hit my head.

  • I was riding a horse and it broke into a gallop and tried to throw me off
  • I hung onto it, but eventually slipped off
  • When the counselors asked me what happened, I had trouble remembering what had occurred and I got confused and disoriented when I tried to tell them what had happened. I couldn’t remember exactly.

High School
Freshman/Sophomore (?) Year (1979-80?)

  • Fell from a tree I was climbing
  • I “blanked out” and “forgot to hang on”
  • I fell about 10-15 feet, landed on my back across a log
  • The fall dazed me and knocked the breath out of me – I was dazed for several minutes after the fall
  • I stumbled home and laid down
  • I was very addled and turned around

Senior Year (1982-83)
Football — got tackled and was a little slow getting up

  • was dazed and confused and out of it for a while, but got up and kept playing
  • the guy who tackled me saw that I was out of it, and he cut the game short after a little while and he saw I was definitely impaired (moving more slowly and out of it)

Soccer — fell down and took a little while getting up

  • was dazed at first, but made light of it

Lacrosse — very physical games

  • lots of contact, bumping, falling, rough-and-tumble

Adulthood

Car Accidents

I was in several car accidents (1988-89)

1.Hit from the (driver’s) side by a speeding sedan, 1988

  • Police came, I think no tow was necessary (? can’t remember exactly)
  • I was disoriented and “off balance” for days after that
  • Police report faulted me, but it was not my fault, and I couldn’t collect my thoughts to file a complaint or amend the report
  • disoriented and intimidated
  • One of my bosses offered to go with me to the police, but I couldn’t collect myself enough to do it
  • I was unable to follow instructions and couldn’t understand what my bosses were saying to me
  • it just sounded like gobbldy-gook – I couldn’t make out the words, and I thought it was something wrong with me, or their accent
  • I had been able to understand them before — I recall standing in the office, just looking at my boss, trying to figure out what he was saying to me, wondering why it didn’t make any sense to me
  • I just told myself it was his accent, but I knew something else was going on, I just didn’t understand what

After that I left that job a day or two later

  • I just didn’t show up one day
  • didn’t bother calling the agency
  • I quit working completely and started drinking (a lot) during the day

2. Rear-ended in slow traffic, 1989(?)

  • On the way to the train station, got rear-ended in suburban traffic
  • No damage to the car, didn’t file a report or call the police
  • Just took off — in a hurry to get to the train station
  • Had difficulty getting there, got confused and turned around and had to keep looking for the train station, but I pushed through and got there
  • Neck was sore for days after that — very strong feeling of whiplash
  • Never saw a doctor about it… everything was a whirlwind around me

After that I cannot remember any immediate, obvious changes, but work was a challenge for me, and I wasn’t dealing well with it.

3. Rear-ended in heavy holiday traffic at Thanksgiving time (1995)

  • Hit from behind
  • No police called, traded info with other driver
  • Understanding and filling out the rental agency report form was very difficult for me, and it took me a while, but I got it done
  • I missed some of the “dings” on the car – completely missed it, even after looking the car over with a fine-tooth comb

After that I cannot remember any immediate, obvious changes after that, but it became increasingly difficult for me to deal with my stressful job, to draw boundaries, to keep on top of my duties. I dropped a lot of the projects I’d started, had issues with communicating with attorneys, and could no longer advocate for myself with my boss(es). My main boss reprimanded me for not being as articulate as usual. He clearly noticed a difference, but nobody connected it with the accident.

Various Falls
Fell off horse – early/mid 1980’s?

  • We were camping and went horseback riding
  • I was on an unruly horse that I couldn’t control. I had trouble keeping my balance.
  • The horse threw me off – and went back to the camp without me
  • I’m not sure if I hit my head

Fall Down Stairs @ age 39 – Day (or 2) after Thanksgiving, 2004

  • I fell down the stairs at my parents’ house and smashed the back of my head on 3-4 of the top stairs. No open wound.
  • I was standing at the top of the stairs at my parents’ house (very steep staircase, about 20 stairs or so), packing bags and carrying them to the car to head home
  • I was going to walk down the stairs, and someone called to me from the bedroom
  • I stopped to listen to what they were saying, and I lost my balance at the top of the stairs – I was in stocking feet, and my feet just went out from under me.
  • I landed on my back and hit the back of my head
  • I hit my head hard on the top 3-4 stairs, as I went down
  • My head just bounced off the top stairs
  • I lifted my head up and tried to stop myself by putting my hands and feet along the walls — couldn’t stop my slide
  • I ended up sliding down the whole flight and stopped at the bottom
  • When I got to the bottom, I was dazed and drew a blank
  • I was “out” briefly — maybe a few seconds
  • I didn’t immediately know where I was or what had happened to me
  • Didn’t know why I was at the bottom of the stairs
  • I wasn’t sure if I could move
  • Someone called to me, and I heard them from a distance
  • I answered, and I got up and went into the dining room before anyone could come to check on me — I just didn’t want to worry them
  • I got up and went into the dining room to check myself out
  • My back was hurt, and I was dazed
  • I didn’t really think anything of hitting my head
  • I was more worried about my back being torn up – it really hurt
  • Someone came downstairs to check me out, and asked if I’d hit my head
  • I said “No” – I’m not sure if I even realized it at that time, I was really dazed — but I do remember that I didn’t want to worry them, and I didn’t want to have to concern myself with that, because I didn’t trust the nearby hospitals. I was also concerned that the hospital would take actions that I couldn’t defend myself against, because I couldn’t communicate effectively.
  • My back had a big brush burn on it, and we focused on getting that taken care of

After that I started having more trouble at work, relationships fraying and straining, not being able to keep up with my work, constantly feeling like I was falling behind, saying inappropriate things (insubordinate statements) in meetings, and becoming openly hostile and verbally aggressive towards others I worked with. I went from being one of the top go-to people in my line of work, to persona non grata and being told I had to leave the group by July of 2005 (8 months after the fall). I converted from a full-time employee to a contract technical writer at about 60% of my former pay.

My Common Indicators of Head Injury

This is pretty much what got the ball rolling with me, in tracking down my TBI issues and finding a road to recovery. I knew I’d had a very difficult childhood, and I knew I had lots of issues as an adult. But this was the first piece of the puzzle that actually prompted me to seek help from a doctor.

Taken from The TBI Survival Guide by Dr. Glen Johnson – which is a link in the side column.

HEADACHES

1. Do you have more headaches since the injury or accident?

Not sure if it’s been since the injury/accident. I often have headaches. I have them so often, I just block them out. I don’t really notice them — it just feels “normal” to me to have a headache. I had a lot of headaches as a child, and my mother called them “sinus headaches,” but I can specifically remember times when I did not feel stuffed up, and I did not feel like I had sinus issues, but I still had a headache. My mother did not differentiate between them. Currently, I have headaches on an almost daily basis. But I don’t generally notice them, unless I pay close attention and actually self-assess.

2. Do you have pain in the temples or forehead?

Yes In my temples at times, as well as my forehead.

3. Do you have pain in the back of the head (sometimes the pain will start at the back of the head and extend to the front of the head)?

Yes I have pain in the back of my head — occipital area, sometimes around the base of my skull. I also have sharp, shooting pains that run up the back/side of my head to the front — I call them “lightning strikes”. The pain ranges from 3/10 – 9/10.

4. Do you have episodes of very sharp pain (like being stabbed) in the head which lasts from several seconds to several minutes?

Yes Sharp, shooting pains that stab in my head and feel like an icepick is being driven through my skull — I call them “lightning strikes,” too. It usually lasts only a few seconds. But that’s long enough, thank you very much. The pain ranges from 5/10 – 9/10.

MEMORY

5. Does your memory seem worse following the accident or injury?

I think so I have big pieces of memory missing from my childhood. There is a lot of my childhood that I don’t remember that my parents and siblings talk about, but I have recollection of. Also, since 2004, I’ve had trouble remembering who people are and where I am. I experience this at work, as well as when traveling. But it comes back to me over time – usually within a few minutes, if I think about it. Longer, if I have to “do research” to figure out who someone is.

6. Do you seem to forget what people have told you 15 to 30 minutes ago?

Yes I sometimes need to stop and remind myself what they said, and I have to ask them again. This can happen if I’m not paying attention, but it also happens when I AM paying attention — I focus on the statement or issue, but after a little while, I can’t remember what was just said to me.

7. Do family members or friends say that you have asked the same question over and over?

Yes, sometimes. To-do list items and passing questions need to be repeated sometimes. Or I cannot remember what I just asked them.

8. Do you have difficulty remembering what you have just read?

Yes I sometimes have to go back and read it again, sometimes 3 or 4 times, to retain it. Sometimes it’s because I get distracted, other times I really focus on the words, but I just don’t follow, so I step away and do something else and come back to the words when my mind is clearer. When I am fatigued, this is a big issue for me.

WORD-FINDING

9. Do you have difficulty coming up with the right word (you know the word that you want to say but can’t seem to “spit it out”)?

Yes Fairly frequently… can’t find the exact word to describe what I want to say, or I find a word, but don’t feel like I’ve been understood. That’s why I prefer writing — so I can edit myself and say exactly what I want to say. When I talk, there’s guarantee that I’ll say what I intended to.

FATIGUE

10. Do you get tired more easily (mentally and/or physically)?

Yes I’m often tired and I get tired more quickly than a lot of people around me. Even when I was a kid, I was usually in bed by 9:00 p.m., even during the summer, when other kids wanted to keep playing till midnight.

11. Does the fatigue get worse the more you think or in very emotional situations?

Yes Emotional or mentally taxing situations exhaust me

CHANGES IN EMOTION

12. Are you more easily irritated or angered (seems to come on quickly?

Yes Very intensely — snaps of temper over little things. It’s directly related to the amount of stress I feel I’m under. I snap more when I’m tired/stressed or I judge myself for being irritated/angered. I get agitated fairly easily, when I’m fatigued. My temper “snaps” can come and go very quickly, and I’ve learned to manage them effectively, but they still come up a lot.

13. Since the injury, do you cry or become depressed more easily?

Yes Hard to say, since I’ve always been inclined to get depressed, moreso than other kids. My mom was always giving me a hard time for not being more cheerful and not smiling enough. She would complain that I was angry and bitter, and she would get very frustrated at how out of sorts I could be. But I learned to keep my depression to myself.

CHANGES IN SLEEP

14. Do you keep waking up throughout the night and early morning?

Yes Especially during times of stress. Moreso, since the 2004 fall, than when I was a kid.

15. Do you wake up early in the morning (4 or 5 a.m.) and can’t get back to sleep?

Yes Since the 2004 fall, more than when I was a kid. I often wake up at 3:00 or 4:00 a.m. and cannot get back to sleep. I adjust and adapt with progressive relaxation and guided meditation, or I just get up and get things done in the time when I’m awake, and then I nap on weekends and evenings.

ENVIRONMENTAL OVERLOAD

16. Do you find yourself easily overwhelmed in noisy or crowded places (feeling overwhelmed in a busy store or around noisy children)?

Yes Absolutely Always. Crowds overwhelm me, and noisy kids fray my nerves.

IMPULSIVENESS

17. Do you find yourself making poor or impulsive decisions (saying things “without thinking” that may hurt others feelings; increase in impulse buying?)

Yes Saying things that are hurtful to others or inappropriate, against my will and better judgment — I know not to say them, but I can’t stop myself… like watching myself on a movie screen, unable to stop the train wreck. I am also prone to impulse buying, at times.

CONCENTRATION

18. Do you have difficulty concentrating (can’t seem to stay focused on what you are doing)?

Yes Especially during times of stress. I have a harder time on longer-term projects, than I did before. My mind tends to jump around a great deal, following associations, and if I’m not rested and paying close attention, I can easily drift off topic.

DISTRACTION

19. Are you easily distracted (someone interrupts you while you are doing a task and you lose your place)?

Yes Very frequently — and then I get very angry when it happens. Temper flares.

ORGANIZATION

20. Do you have difficulty getting organized or completing a task (leave out a step in a recipe or start multiple projects but don’t complete them)?

Yes Yes, my work slips and I overlook critical pieces of information, which undermines the success of my team, as well as my credibility. I have done this for years — worked very hard to finish something, then came to find out that I left out a critical piece of information that completely wrecked the whole spreadsheet/document, etc. It’s not a concentration thing or losing my focus — I am focused 100% on the work, but I miss something really critical and don’t catch it till afterwards, when it’s too late to fix it. This has caused a great deal of trouble for me at work, as I am often in mission-critical positions on multi-million dollar projects, and the demands and expectations are very high. I cannot mess up, and I do everything my power not to, but I sometimes “slip” without warning. I have absolutely no idea that I’m missing something, till too late.

Total Yes Answers = 20

If you have 5 or more Yes answers, discuss the results of this questionnaire with your doctor.

Putting the logic in “neurological”

Okay, here’s my next question:

If neurologists are trained in a “scientific” sort of method and they specialize in studying the brain, why is it that there seem to be so few neurologists out there who truly “get” TBI?

This is quite distressing… and by “this”, I mean all the stories I’ve heard and read about how people who have sustained TBI’s are either dismissed or misdiagnosed or just plain mistreated. My own story is among them.

Before I start, I just want to say, this is not intended to be a rant about the terrible experiences I’ve had with neurologists. I have had some pretty distressing ones, but I really think it’s more productive to seek solutions and embrace the lessons, rather than gunning for revenge. We’ve all been hurt by someone or something, along the way, and if we’ve got TBI-related issues, the situation tends to be muddied — both by the ignorance of the general populace (and a lot of “experts”) and by our own altered cognitive processes. I realize, as a result of my TBI’s, that my mind can play tricks on me. So sometimes things aren’t as bad — or as good — as I think they are, so please take what I’m about to say with a grain of salt.

My own neurological saga began nearly a year ago, when I started to put two and two together and realized that there was something fundamentally wrong with my cognitive process. Something that had gone unrecognized and undetected for almost my entire life, but had been a persistent problem and issue for many, many years.

In the process of talking with my therapist, I took a very close look at the events of my childhood and how they had affected me. I’ve had a lot of behavioral and cognitive and emotional problems over the course of my life — I’ve been able to mask the cognitive and emotional ones really well, mostly by just keeping quiet and being very vigilant about people’s reactions to me, but the behavioral ones were a real problem when I was a kid — it’s what people could see: the temper tantrums, the meltdowns, the bad moods, the lashing out, the yelling, the acting out… Yikes.

Anyway, I was trying to figure out why my siblings had similar experiences to mine — some of them had worse ones, in fact — but I had the most trouble with things. One day, I just mentioned to my therapist, off-hand and very matter-of-factly, that I’d been hit in the head with a rock when I was 7 or 8 years old. She didn’t follow up with that, but that started me thinking. And it occurred to me that that injury, which I recall knocked me out briefly, might have affected me more than I realized.

I went about collecting and recording as much information as I could about my observations of my life — using valuable guidelines over at www.headinjury.com as a starting point. (Thanks! to them for their great info! What a great resource they are!) I wrote down as much information as I could about my childhood experiences that seemed to be directly related to my injury at age 8… and then I collected as much info as I could about how it appeared my adult life had been impacted by that injury. I started to see a lot of patterns that bore a really close resemblance to things I read about other people experiencing. (I’ll post some of what I collected, so you can see what I came across.)

Then I systematically kept track of my daily experiences, and I recorded what went on with me on a regular basis, tracking it to the symptoms of TBI. And I read a lot online about how people can be affected by brain injuries.

Now, all this was happening behind the scenes of my regular life — sort of on the QT. I did reach out to local brain injury associations, as well as some support groups. I was still really searching for some understanding of what had happened to me, and how it affected me. All of a sudden, I had a plausible explanation for all the difficulties I’d had as a kid, why I was so erratic, why things that were easy for other kids were hard for me… and why I’d made the kinds of decisions and taken the sorts of actions I had as a teenager and an adult. So many things could be explained by this! It was both euphoric and disconcerting. A lot of information came into my life in a relatively short period of time. And I was pretty much doing it on my own.

Knowing that I have a long history of being mistaken or downright wrong about things that seemed pretty “obvious” to me, and knowing that going it alone was perhaps not the best way to do things, I decided to seek out help. I was given some great information from other TBI survivors about finding a neuropsychologist to do an assessment of my situation and help me formulate a plan to rehabilitate myself. The only problem was, someone warned me, my insurance company was notoriously difficult about covering neuropsych exams (NPE), unless they were medically warranted.

I knew I needed an NPE — really for the sake of getting some professional corroboration about my situation, so I wasn’t just running around saying “This is what happened to me!” and making a total fool of myself in the process (It’s happened too often before, sadly). But how to qualify to get one?

I asked around, and people said that a neurologist would be the one person to determine if you needed one — anything less might not be honored by the insurance company. The problem was, not all neurologists have a clue about TBI, and some of them are downright hostile, when it comes to brain injury. I’m not sure why this is, if they’re neurologists and it’s their job to know about the brain, but there we have it.

So, off I went in search of a neurologist who specialized in TBI. I searched high and low, pulled data from listings from support groups and organizations, then cross-referenced that list with the neuros my insurance company listed on their website. It was a painstaking process, but eventually I found a neuro who specialized in TBI who seemed like a decent sort of fellow.

I compiled all my notes and edited them down and collected them in a three-ring binder. I listed my symptoms, my history of head injuries (which had actually lengthened — the more I thought about things, the more injuries I realized I’d had), my issues, and information I thought would be helpful for him to make some sort of diagnosis. I genuinely thought he would be open to it, and that he would appreciate the information, without having to sit and ask me all the questions. Plus, I was afraid I’d get turned around and not be able to answer accurately, so I wanted to make sure I had the right information recorded. I take my health very seriously, and I take my integrity seriously, too. I didn’t want to be misstating or confabulating or confusing the issue.

Well, I don’t have the time here to describe exactly what happened, but the end result was me feeling incredibly dismissed and my difficulties downplayed. (I’ve got to write more on this — it’s a great story and an educational tale — but not for this post.) Bottom line was, the neuro wouldn’t pay any attention to the information I’d collected, he ruled out the benefits of an MRI, he tossed my book aside, and he reached the eventual conclusion that I had “emotional problems” and I needed to see a cognitive-behavioral therapist and possibly go on Ritalin or some other stimulant.

He basically told me that my situation was “more complex” than he liked to deal with, and there wasn’t much he could tell me, so I should go see a neuropsychologist.

Well, yuh, I already knew that. I had been hoping he could at least confirm or deny the extent and possible impact of my injuries. But apparently, it’s kind of hard to tell what’s up with someone when they’re talking about multiple injuries sustained over the course of more than 30 years.

In retrospect, I think that my emotional state at that time didn’t help. I was very stressed when I went in to see the doctor, and I wasn’t really clear about the answers I was giving. I also didn’t feel as though he was in the least bit sympathetic to me, and I had a lot of trouble verbalizing the answers to his questions — either I gave him too much information, or too little. It just wasn’t good. Plus, he only had 50 minutes to spend with me, so there wasn’t much either of us could accomplish in the meantime. He did give me a neurological exam, and I came out looking pretty normal, from what I can tell.

I left that visit feeling genuinely unnerved. At the very least, I had expected at least a little indication of interest in my situation, but the doctor seemed more interested in seeing people with “real” problems — as though a lifetime of catastrophic relationship failures, a patchwork job history, constant headaches and ringing in my ears, mood and behavioral issues, and a complete and utter failure to fully realize my potential is not much of a problem at all.

Maybe he was looking for something more dramatic. Like a tumor. Or cancer. Or a Phineas Gage-like iron spike through my skull. Or some sort of medical data, which I did not have, since I’ve never gone to the hospital or sought medical treatment for any of my injuries.

Anyway, I was pretty torn up about the experience, and I continue to be bothered by it. It doesn’t help that this TBI business is wreaking havoc with my perceptions, but there seemed to be an alarming lack of intellectual curiosity, or even logic, to the doctor’s demeanor.

So, I buckled down and went ahead with finding a neuropsychologist who could perform an NPE on me, per the doctor’s directive. Again, like Diogenes with proverbial lantern in hand, I searched high and low, seeking a qualified individual who had a clue about my type of situation. Again, I had to cull out the ones who were flagged as “trouble” by a brain injury support group info packet (like the ones who testified for insurance companies to discredit TBI survivors in court). And then I had to cross-reference them against the insurance company’s website. And then I had to research their background and their professional reputation, if I could find it.

I found someone, at last, but he couldn’t fit me in until September. This was back in April, or so.

So, I sat and waited. And lined up another job. And totally screwed up that job and had to go find another one, so I wouldn’t lose my house.

All the while, it was getting harder and harder for me to deal with being so brushed off by that first neuro. So, I thought I’d see another one — someone a friend of mine had been seeing, whom she liked pretty well. I made an appointment with him and went to see him, thinking that I might get farther with him, if I just focused on one issue, rather than the whole kit-n-kaboodle.

I made up another version of my notes for this doctor and took it with me to reference. I wasn’t going to make the same mistake I’d made with the last doctor and just run my mouth without anything positive coming out of it.

But this guy was even worse than the last one. I think he may have either talked to the other doctor or he saw some of my notes from my PCP, who got a letter from the first doctor, and he treated me like a “hostile witness”. He wouldn’t let me use any of my notes, and he just grilled me over and over about details I wasn’t clear about, or I had to take time to think about. He announced that an MRI would be pointless to do, and he said my headaches were just stress. I had no time to gather my thoughts or describe the full spectrum of my issues, and I left feeling totally bulldozed and dismissed… and a little mistreated. (Again, I’m sure my TBIs didn’t help my processing at all — I’ll post more details on my experiences later — it’s really a very informative story.)

In the end, I didn’t get anywhere with these doctors. Maybe I was looking for the wrong thing from them. Maybe I was expecting too much, hoping for sympathy or at least a little curiosity about me and my situation. But still, it seems to me that a neurologist (for heavens sake!) would exhibit at least a little interest in someone like me — someone who has sustained multiple mild traumatic brain injuries over the course of my life, and has still managed to put together a life that a lot of people would be happy to have — with a loving spouse, a great house in a great town in a great state, pretty decent facility at getting along in the world, a career that looks great from the outside, the ability to be employed, and to be fully engaged in my life (my limitations notwithstanding).

But in the end, I got nothing. Worse than nothing. I got dismissed. Shunted off. Sent away to someone else.

I’m a TBI survivor who needs help understanding exactly what is up with me, and why my brain doesn’t work the way it should. I sought the help of neurologists… who just couldn’t be bothered with me. They dismissed me without so much as a second thought, from what I could tell. It’s their job to help people with neurological issues… I’ve been under the impression that it’s their job to identify the issues and be of assistance. And yet, both of these guys exhibit precious little interest in my situation.

Where’s the logic in that?

Things are looking up on the job front!

Things are really looking up! I’ve been away from this blog for a really long time… about eight months, in fact. And it’s been a really busy eight months.

When I last posted, I was in the process of looking for a job. Or had I just started a contract? I think I was on the cusp of re-entering the workforce, trying to get my ducks in a row, trying to make sure that my resume was in fact a work of fact (and not fiction ;), just working like crazy, trying to keep my head on straight and not freak out, realizing that my brain has changed and is not going to return to how it was anytime soon… if ever… and realizing that my brain actually had changed numerous times, over the course of my life, and a lot of the assumptions I fondly held about myself might have been “off” — if not flat-out wrong.

It was a lot to process, considering I also had to keep my head above water, find a job, pay the mortgage, and try to maintain some semblance of normalcy in my life. It was a lot! But then, when I really sat down and thought about it, I had been wrangling with these types of challenges almost my entire life… I just didn’t realize it, till the end of 2007. And once I realized it, and I took a long, hard look at how well I’ve actually done in life, well, that made things a little bit easier.

A little bit…

But some things still were pretty much of a challenge for me, and since I’m given the option between laughing and crying, I think I’ll see if I can keep my sense of humor as I recount what’s been going on for most of the past year.

In January (I’m pretty sure), I started a web developer contract position at a major multinational technology company that has its headquarters cleverly built into the side of a hillside with a commanding view of the rolling countryside below it, about 20 minutes from my home. It was actually a really great gig, as the money was pretty good, the hours were flexible, and it’s the kind of work I’ve been doing since 1996, so it’s almost second nature to me. Actually, it is second nature to me.

(Note to those who think that computer programming is “beyond” the ability of a TBI survivor: Computer programming/web development is perhaps the best employment I could possibly find because A) it’s very binary, as in, you either get it right or you get it wrong — either what you type in works, or it doesn’t, B) the only person who ever needs to know how badly you screw up, is the computer, and it will never call you idiot! imbecile! stupid! space case! (at least to your face ;), so you always have time to fix your errors before some human comes along and notices your screw-up, and C) this line of work tends to be heavily project managed, at least in corporate environments, so I always have someone looking over my shoulder who can help keep me on track).

But back to our regularly-scheduled programming…

Anyway, I had this great gig going on at a huge company in a huge building with a huge employee population, and I was working on projects that were being used in countries like Latin America and Europe, and I was making pretty good money. The only problem was, I wasn’t paying close enough attention to my stressors, and I wasn’t getting enough rest, and my “issues” started to kick in. I found myself becoming increasingly stressed over my work — there was some takeover bid being considered, and people were nervous about their jobs, and the environment was actually too big for me — the space itself was cavernous and I found it disorienting to walk down hallways that were not only BIG, but were also very sterile and, well, hard. I have certain sensory issues that make me really sensitive to sounds and light, and the actual sound of walking down those corridors… the echoing in my ears, was actually a stressor.

Plus, I was having communication issues… having trouble understanding what I needed from the work situation — what worked for me, what didn’t. I wasn’t able to articulate very well about the things that got to me, like not having a properly configured computer that was hooked into the main system the way it should be (I was essentially doing network work on a “standalone” computer, so I never knew if my work would come out right). And the guy I was working with was also not very communicative. I could never tell if I was doing an okay job or not, and I didn’t know how to ask in a way that didn’t sound stupid to me. I tend to be the kind of person who doesn’t like to call attention to themself, anyway, so I didn’t want to highlight the fact that I felt like I was falling behind in my work. I didn’t want to give anyone the wrong impression and seem like I didn’t have confidence in my own abilities. If I did that, I was afraid I’d set off the alarms and people would start to look for problems with my work, and then I’d lose what little control I had over my situation.

Well, long story short, I actually did lose control of the situation, and by the end of the 2-1/2 months I was there, I had successfully alienated my recruiter who’d placed me there — no, alienated is not the right word — more like, infuriated, pissed off and completely distanced (I can still smell the bridge burning behind me) — had pushed everyone in the group away from me, and I’d gone off to a permanent position that suffered a similar fate to the one I had just left.

Yes, I went from the frying pan into the fire, but this time, in March, I was driving twice as far and dealing with a company that was a fraction of the size of the one I’d just ejected out of.

I took a job doing more heavy-duty development work with a little start-up that made big promises and sounded like a great thing… like a cyber-tribe of sorts, with a close-knit group of people who liked to play as hard as they worked. And my decision to sign on with them was both ill-informed and ill-advised. I mean, I asked all the right questions… I even wrote them down ahead of time and checked them off on my list. But the answers I got did not “correlate with the truth” — in other words, they told me what they thought I wanted to hear, and I took the bait, hook, line and sinker.

That tale is a sad and tragic one — even more sad and tragic than my ill-fated stint at the MegaCompany. The long drive fatigued me, but the frenzied pace and the lack of structure is what really took its toll on me. Plus, it turned out that the technology they built was NOT as ready for prime-time as they said it was. It was, to my systematic and logic-seeking mind, a total friggin’ nightmare.

And I really screwed up with my exit from there, too. I wasn’t able to keep up with things that were happening around me, I ended up making stupid comments and drifting way off base in meetings, I wasn’t able to concentrate, I wasn’t able to deal. Plus, the building was situated in a place that was very remote — I couldn’t get away from the office without considerable effort, and I just got so turned around and freaked out… it was very sad. And I started having serious issues with memory and logic and being able to interact with other people. By the time I left there, I’d really alienated everyone in the place, and my excuse that I was leaving for health reasons (which was quite true, tho’ not the entire truth) barely got me out the door without being attacked by the CEO and the President, who both had a terrible reputation for tempers and verbal abuse. It’s not that I couldn’t have survived their vitriol, but what worries me is what I might have said in return. I have a real skill for going off on people and venting inappropriately.

It was bad enough that I had to bail on them after three months. I didn’t want a full-on TBI-exacerbated confrontation on my conscience, too.

So, I did the humiliating but necessary thing — I made excuses and snuck out the back door. ’nuff said about that adventure. For now, anyway… there are lots of juicy tidbits that are very educational in hindsight, so I’ll write about them later.

Anyway, somewhat demoralized and downtrodden, I started another job a little over three months ago with another multinational corporation, doing web development work. The team I’m working with is small and close-knit, and between the ADHD and other personality quirks and old sports head injuries, we all manage to reach agreements about how to deal with each other well. So far, so good. They know there’s something “different” about me, but they don’t hold it against me. And frankly, there’s plenty about them that’s different, too, so I’m in my element.

For now…

When I look back on my work history, I have to say it’s a little disconcerting to see how short a time I’ve spent at so many companies. The longest I’ve ever been in any one group, is 2-3 years. I include my 9-year stint at a multinational corporation in that, since I jumped around a bit, and I moved from group to group — I was in 5 different groups in the 9 years I was there, having made a deliberate decision to move on, myself. So, while my resume says “Such-and-such-A-Company” (1997-2005), the fact of the matter is, I had five different jobs there, in five different groups:

1. 1997-1999 — web developer

2. 1999-2000 — software engineer (yes, it’s different from being a web developer)

3. 2000-20002 — technology integrator

4. 2002-8/2005 — software engineer/architect

5. 8/2005-12/2005 — technical writer

And because all these were done at the same company, they don’t “count” as career shiftlessness. So, I can get away with it and camouflage my issues and still look great in the process. Which is great for my resume and career.

The only problem is that now I’m out on my own and I’m not doing this at the same company, so my resume is starting to look a little more sketchy. Which isn’t good for applying for financing, and it isn’t good for finding other jobs.

Fortunately, for the time being, I’m in a good place at a good company that’s in the healthcare industry, so there’s not bound to be any decline in business anytime soon.

And despite the fact that the last two attempts I made at finding and keeping gainful employment were sad chapters in the book of my life, the fact is, I didn’t get fired, I left on terms that were my own, and although I truly regret the fallout and consequences to the people I “bailed on”, the fact is, no animals were harmed in my experiment, and everyone is still standing. So, it’s not a
total loss, and I did learn a lot! (I simply must write about this later!)

Things are indeed looking up!

Working my way through all this…

It’s been a few months, since I first put 2 and 2 together and realized that there was actually an “umbrella” that I could collect all my internal issues under — Mild Traumatic Brain Injury, or MTBI.

I’ve been talking to folks in support groups and medical professionals, and it just amazes me how little information is readily available, unless you’re “locked on target” and deliberately seeking it out. I am locked on target and I’m on a mission to figure all this out, and it’s my hope that my writing on this blog will help others who are pretty much clueless about what TBI is and how it can affect your life and that of others.

I came across a great book, which I’m gradually working my way through, called Brain, Heal Thyself by a caretaker for a stroke survivor, who helped her friend return to functional health — despite what the medical establishment said was possible. I’m still reading, but on page xvi of the Introduction, one of the great things she says is how medical professionals like to say “Every stroke is different,” as a way to get out of answering our “weird” questions. Amen to that! I am so sick and tired of that lame cop-out, where people who go to school for many years, studying the dead and the dying (they start out with cadavers, after all, and often see only people who are so far gone they can no longer avoid visiting a doctor), can’t bring themselves to study the living… or give us the credence to take in the information we pass along to them, because it can’t be standardized, categorized and controlled the way they’d like.

I am just so sick of it. The conflicting information, the arrogance of a medical establishment that will say, one month — with all confidence — that eggs are undoubtedy very bad for you and will probably kill you if you eat too many of them… And then turn around the next month (apparently, when the Egg Growers Lobby raises a hue and cry and funds a conflicting study) and tells us — with absolutely certainty — that eggs are actually not bad for you, and you’ll probably suffer health defects and slide slowly downhill in a state of painful, irreversible physical decline, if you don’t eat three eggs a week.

These same people are running around doing studies and using advanced equipment for research, and either keeping their findings to themselves — locked away behind the wall of medical terminology — or discouraging “lay” people from finding out about it for themselves. I can’t tell you how many weird looks I get from doctors and clinicians, when I talk about research I’ve read or things I’ve observed in my own life.

And, as was the case yesterday, sometimes I’m contradicted on my findings by doctors who freely admit that they are not experts in TBI — and actually say they know next to nothing about it — but they’re sure I must be wrong about my symptoms. Probably because I’m not a doctor.

But I live in this body. I am living this life. And if anyone should know what’s going on inside my little head, it would be me… provided, of course, I can apply unsparingly rigorous “reality checks” to what I think I’m seeing/hearing/thinking/experiencing.

That’s the pecadillo about impaired self-awareness. The one person who should/could be the expert on their brain, might not be. It’s maddening. But there are ways around this — when you know you’ve got limitations, you can plan for them, work around them, accommodate them, and adjust your standard deviation metrics.

So, I’m just working my way through all this. Trying not to get locked into one “set” way of thinking about how my brain functions, sticking with the facts of the matter:

  • I was struck in the head by a rock around age 8, was knocked out briefly/dazed and groggy afterwards, and I noticed significant changes in my behavior, moods, and cognitive abilities thereafter.
  • I fell down a flight of stairs in 2004, hit the back of my head several times, was intensely dazed/nearly knocked out for a few second, and thereafter found myself missing key information (like not recognizing people I worked with), unable to get a full night’s sleep, having intensified temper flares, and a whole raft of cognitive problems (like suddenly being unable to multitask and switch gears like I used to very fluidly), which I attributed to job stress, but which continued after I left the job (which imploded around me, when I couldn’t keep up with the pace).

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

If there’s anything I have, it’s time.

I am so tired of paying attention to myself and my brain…

I have to say, I’m getting really, really tired of having to pay such close attention to my brain and my behavior all the time. I long for the days, when I could just take things for granted and not have to worry about the consequences of each and every thought, act, and word.

It makes my head hurt, to pay such close attention all the time. More thinking means more headaches. I have an appointment set up with my doctor later this month to discuss this. The discovery phase continues.

It’s such a change for me, to be paying such close attention to myself all the time. I’ve always just done what I felt like doing, and I didn’t much think about the consequences. But now I see that not paying attention and not accepting my limitations has cost me jobs, has cost me earnings, has cost me relationships, has cost me connections…. Not paying attention to my limits and not accepting my deficits and not being willing to work with/around them has sorely impacted my ability to participate fully in this life and this world.

And I’m sick of it.

Yes, it makes my head hurt to think about all this TBI stuff, day in and day out. But if I don’t pay attention, I find that I get pulled into old patterns of not realizing when I’m going down a tricky path… not realizing when I’m over-tired and not thinking clearly… not realizing when I’m over-extending myself personally and professionally… not realizing when my head is getting ahead of me and I’m falling farther and farther behind in comprehending what’s going on, losing track of conversations, forgetting the way I’m presenting myself… Things can get out of hand so quickly with me, and I can end up saying and doing things that are really counter-productive — snapping at people who are trying to help me who don’t know me very well… biting the heads off loved ones who are on a short leash, as it is… being insubordinate at work… missing important details in conversations… overlooking important steps in things I need to do…

When I don’t pay close attention, I can get lost very quickly. So, I’ll just need to get in the habit of moving more slowly, more deliberately, more mindfully. And have this mindfulness just be an integral part of how I do things in life.

There are worse things than slowing down.

TBI and Mental Illness

I found an interesting post over at Lawyers Attorneys: Brain Injury and Schizophrenia: How to Deal

For victims of a traumatic brain injury (TBI) and their families, side effects such as bipolar disorder and memory loss are tragic, but well known and well understood. But in the last decades, scientists have begun to study another serious side effect of brain damage that may go undetected: schizophrenia.

What is Schizophrenia?

Schizophrenia (Greek for “shattered mind”) is a psychotic disorder that affects behavior, mood and thinking. The term was originally coined as “the schizophrenias” because of the wide variety of symptoms characterizing the condition. A misperception that all schizophrenics hear voices is actually untrue. It is a symptom in some suffering from schizophrenia but not all. Psychologists break symptoms of schizophrenia into three categories:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

Schizophrenia Related to Brain Injury in Patients

Scientists have established that psychiatric conditions such as bipolar and anxiety disorders are more common in patients who have suffered from traumatic brain injuries. Schizophrenia itself has been associated with individuals who have previously suffered brain damage regardless of family history. But it is only since the early 1990s that researchers have begun to explore in depth that connection between brain damage caused by traumatic brain injury and schizophrenia.

Schizophrenia and Brain Injury: Recent Studies

. Among the findings of those studies:

. TBI-associated schizophrenia is true schizophrenia, not another disorder with similar symptoms, according to a 2001 study by Columbia University. Schizophrenia and TBI are now being associated as hand-in-hand illnesses, one usually occurs in the victim of the other.

. Another study in the same year at the University of New South Wales in Australia discovered that TBI patients with schizophrenia-like psychosis had more widespread brain damage and cognitive impairment than TBI patients without psychosis. It also suggested that a family history of schizophrenia and the severity of the brain damage sustained during TBI increased the risk of schizophrenia.

. Scientists at the Hawaii State Hospital found in 2002 that it took an average of four to five years after a traumatic brain injury for psychosis to manifest, with most cases arriving within two years. Psychosis may be the result of trauma and blunt force to temporal and frontal lobes, for which researchers are attempting to determine.

While the complex nature of schizophrenia makes its cause unclear, as the last study suggests, there is evidence to believe that brain injury directly causes schizophrenia, by damaging the areas of the brain that control higher functions. There is also evidence that a traumatic brain injury may cause psychosis indirectly. Scientists believe that schizophrenia is caused by a combination of genetic susceptibility to the disease and an emotionally or physically traumatic experience that triggers this susceptibility. Researchers are finding that TBI and the trauma that can occur can actually trigger schizophrenia.

Many physicians know a traumatic brain injur may cause neurocognitive disorders such as trouble with speech, and psychiatric problems like bipolar disorder, but not all are aware of the growing evidence linking schizophrenia with brain damage. It is imperative that after a TBI accident, that a victim consult a psychiatrist to ensure that they return to normal behavior. In addition, brain injury patients and their families should consult an experienced brain injury attorney as they seek to recover costs for expenses such as lost wages, current medical costs and future medical care.

A couple of things came to mind when I read this:

  • Okay, so does it mean I’m going to lose my mind, because I sustained a TBI? Am I headed for a psychotic break?
  • If head-injured folks are given proper treatment, rest, nutrition, and time to heal after their injury, will that help prevent a later development of mental illness?
  • How is that these symptoms are ascribed to schizophrenia:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

I don’t know nearly enough about schizophrenia, but it seems to me that calling a neuro-physical condition a psychological one not only makes it difficult to properly diagnose, but also makes it difficult, even dangerous, to treat. Approaching an actual physical condition (or a neurological one) with a psychological approach might actually do more harm than good — convincing the specialist and the patient that there’s something wrong with them rather than something wrong with their bodily system.

Might this not actually make matters worse? I think psychotherapists and psychiatrists really need to think this through — familiarize themselves with TBI and its effects and realize what neuro-physical issues might truly come up along the way that mask themselves as psychological issues, and realize that they might be barking up the wrong tree.

Misdiagnosing TBI as schizophrenia or some other psychological disorder is dangerous, not only for the patient but also for the clinician, and it makes both parties chase the wrong ghosts. Not good for anyone involved.

(Note: I have more thoughts on this at this post – More thoughts on Brain Injury and Mental Illness)

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Keep it simple. Or else…

I’m discovering an interesting phenomenon with this blog… that correlates with other facets of my eventful life:

The tendency to complicate things and overwhelm myself. I am naturally inclined to break things down into little tiny pieces and focus on those individual pieces so intently, that the sum total becomes vastly complex, and I get overwhelmed with all the detail.

For example, I started this blog with the simple intention of recording my daily experiences as an MTBI survivor. Just to tell about what it’s like, so others can see how it is to live with a broken brain that doesn’t do justice to their brilliant mind.

Pretty soon, I feeling like I wasn’t offering enough “quality content” and I got caught up in doing all sorts of research and reading and going off on tangents to try to better understand something I was writing about. Comprehension and deeper understanding are admirable goals. All good, right?

Not so much. Because after a while, I started to lose track of what I was trying to do/say. And I ended up getting down on myself for losing my way. My brain couldn’t keep up with my mind, and I ended up in a vicious loop of diminishing effectiveness.

I go through this process with planning. I do it with doing. I do it with everything, from understanding personal relationship issues to parking the car. I get all enthused and discombobulated and turned around and swamped and confused and upset and discouraged with myself, and it takes a toll on my self-esteem. But then I regroup and figure out how to move forward, by breaking down steps into little tiny pieces and doing each one properly. But I need to be able to discern what is a reasonable level of complexity to indulge.

Here’s how the loop goes, in linear terms:

  1. I decide on a simple goal (recording my daily TBI-related experiences)
  2. I start work on that goal
  3. I make good progress, right out of the gate (I posted a whole bunch of stuff and found good info to share)
  4. I start thinking about how I can take it to the next level (I looked at some of my past posts and thought about what more I needed to know/say about them)
  5. I identify a bunch of different tangents to explore (TBI experiences, returning Iraqi vets’ experiences, more details on symptoms, medical research, psychological research, all sorts of research…)
  6. I go off on a tangent and explore that (I start reading up on impaired self-assessment)
  7. I get pulled into reading about other tangents (I start reading up on sleep deprivation, PTSD, military policy, alternative cognitive rehabilitation, alternative healing, complimentary healing modalities… etc.)
  8. I take notes and make outlines of what I want to write (I outlined at least three separate pieces I want to work on and identified various projects that move me.
  9. I get all motivated and fly into action on a handful of these things (I created of my headache journal, with several versions available, not only as PDFs but as coil-bound books, as well)
  10. I think about everything else that needs to be done, and I get overwhelmed with all the work involved (promoting my projects is a full-time job in itself).
  11. I get swamped by the details (I have pages and pages of planning, all of it accurate, all of it necessary, all of it overwhelming).
  12. I get stopped. I can’t ask for help, because by the time I get to a place where I’m stopped, my brain has become so immersed and inundated and absorbed in the details, that articulating any of it to an outside party is just beyond my abilities (I can’t even begin to explain to someone how things are supposed to work — to do that, I’d have to start at the beginning, and that’s so far back, I can’t remember anymore where I started, exactly).
  13. I have to take a break and go off and do something else for a while (I start other projects that motivate me, often with a completely different focus and using a different part of my brain — like drawing or programming).
  14. I start into this same cycle with these new projects, eventually get stopped with them, and then end up with a backlog of all this stuff I’ve started, but haven’t finished (I don’t just have articles I haven’t written, I have headache journals I haven’t properly promoted, I have artwork I need to have scanned, I have hobbies I would like to pursue… none of which are taken to fruition)l.
  15. I look back on my list of things I intended to accomplish, and I feel horrible about it all. I get down on myself, get stressed, get angry, get frustrated, get cruel with my brain… all the while conveniently forgetting that my cerebrum was compromised several times, once upon a time, and I can’t realistically expect it to do everything. For that matter, I can’t expect anyone to do everything I set out to do. There’ s just not enough time in the day, and until I have a full staff or can find someone to help me — with whom I can communicate — I’m going to have to scale back what I’m doing. Big time.
  16. Then I need to take more time off to recap, regroup, reprioritize, and see what I can reasonably expect to get done, so I can feel good about my progress and not be stopped anymore (I take some serious time away, do some “light” reading and/or distract myself with working in the yard, till I feel better… then I pull out all my notes from projects I’ve started, I work down through their status, and I pick out the ones that are closest to being done — the “low-hanging fruit”.)
  17. When I’m all sorted out and my projects are prioritized again, I make my list of things I need to do to complete each one, and I make “punchlists” of items, so I have some guidelines to keep me on track (I collect all my notes in 3-ring binders of multiple sizes, and I keep the notes for individual projects grouped together).
  18. I then take things one at a time and walk through each item, till it gets done. True, being systematic and logical about things is a lot less invigorating than flying into action and “losing myself” in a task. But it actually allows me to make progress.
  19. I try to build in some sort of rewards system for myself, so that when I actually complete something (I have very important projects still going on, that have been start-stall-stop for years on end) I can celebrate… and relax. Take the pressure off. I’m still trying to figure out what those rewards are. Actually, making money is the reward I crave most. So, all my projects need to be money-makers, or I’m just not content.

I really need to be careful that I don’t overwhelm myself. When I do, everything stops. And I have to take a break and regroup. Which works on myself-esteem and makes me feel like I’m “behind”. I haven’t posted to this blog… I haven’t done my chores… I haven’t done this… I haven’t done that… The string of recriminations is just endless. And it works on my self-esteem, because I’m so deep into my work that I can’t see outside myself and I can’t perceive that I’m really in need of a break.

But I have to remind myself that when I take time off to regroup, I’m not actually “behind.” I’m just taking a breather. So I can return and get back in the saddle again. And I need to cut myself some slack.

So, that’s what I’m working on. Ideally, in the 19 steps above, I would really start around step 17 and plan everything out up front. The problem is, when I’m heavily planned and “project-managed”, I lose a lot of my drive and my motivation. I need to engage my heart and my spirit, not just my head. Getting the two together is a huge challenge. But once I figure it out (I’m still working on it), I suspect the sky will be the limit.

Getting up early…

I’ve been having some issues with waking up early, again. I’ve been waking up at 3 a.m. and 4 a.m. and 5 a.m. Sometimes on the same day, sometimes in the same week. If I can sleep till 7:00, it’s a miracle. 5:00 a.m. seems to be the magic hour, these days. I’ll wake up and lie there, hoping I’ll go back to sleep… then after half an hour of just lying there, I’ll decide to just get up and get moving – do something constructive with my time and energy, other than ruminating.

It helps to move. And then later, if I manage things properly, I can have a nap. Which helps.

I think the stress of finding work hasn’t helped. I find that I get “beside myself” with concern over making ends meet, and then I have trouble relaxing… and staying asleep.

But any kind of stress will do it. Health issues, logistics, you name it. It can and will wake me up. And unless I can get my head around a solution and a plan for later, I’ll be UP.