Lost to TBI: My Lifelong Love of Reading Fiction

One of the things I have progressively lost over the past several years since my tbi at Thanksgiving, 2004, is something I never, ever thought I’d part with: my love of reading fiction.

I grew up reading and loving to read. My parents were — and still are — avid readers. Especially fiction. My mom leads the way with fiction, but my dad is usually not far behind. He’s more partial to personal accounts of adventure and exploration, but he still goes for fiction at times — preferably with a moral to it. Mom doesn’t care whether there’s a moral or not. So long as it’s a book, she’s happy.

So was I. I always shared my parents’ love of books, especially fiction. I grew up with my nose buried in a book, and I actually learned more about life and language and what it means to be human from books than from real people and events. I adored fantasy fiction. Stories about ordinary people in extra-ordinary conditions. Short stories, long stories… novellas and novels and epics (I used to love James Michener, especially). I would tear through books, when I was kid, like a starving kid with a sack full of Halloween candy. Many of my favorite books I’ve read over and over and over again, not caring if I recognized the plot and knew how it ended. I just loved to read!

Until the past few years, that is. Since my fall down the stairs in 2004, this has changed dramatically.

Now reading just about anything that’s over 10 pages is a chore. It’s difficult for me to do. What was once effortless when I was younger, has become very time-consuming and resource-intensive. I really have to work at following the sentences and words and remembering, from one chapter to the next, what’s happening.

It’s disheartening and frustrating, and it embarrasses me. It didn’t used to be like this. But now it is.

I try to carve out time for reading, but I always seem to get pulled off to something else. I get distracted and I cannot finish what I start. Or, I try to read while my partner is watching t.v.,  but I cannot focus, and I get very upset with myself.

I check out lots of books from the library (on impulse) with every intention of reading them, but I only get part-way into them, before I either get distracted or I get overwhelmed with the information, and I have to step away

I tend to forget I have a certain book on hand, then I’ll remember that I have it and get excited and start to read it… but I won’t finish it, because I get overwhelmed with the details, I lose track of what’s going on, and the disorientation ruins whatever soothing effect the book might have for me.

My friends and family, knowing the old me, give me books for the holidays and my birthday, but I can’t get through them. I feel awful because they really want to give me presents I’ll enjoy, and they want to share their experiences with the books with me, but I can’t manage to finish them, or even read enough to hold a decent conversation with them. I might enjoy having the books they give me, but I often cannot seem to bring myself to read – it’s too frustrating and disheartening. My home and my study are full of books I’ve only partly read.

Nowadays, it’s very seldom that I’ll actually finish a book I start, whether it’s fiction or non-fiction. Every once in a while, I’ll manage to complete a non-fiction book about something that affects me personally. Fiction is pretty much out of the question for me. I become highly agitated by the characters’ experiences and choices, and it’s uncomfortable for me to be subjected to their drama. I become impatient with them and cannot sustain an interest in anything that happens to them. Non-fiction gets my juices flowing, but I often get turned around and can’t keep the facts straight, and I end up confused and frustrated and down on myself. Even topics I used to love and authors I used to read voraciously, hold my attention for only so long.

Because my attention tends to wander (if I lose interest or I lose my “info buzz”), I try to stick with higher level research, since it holds my attention and really stimulates me. I do a lot of research on the internet – medical, especially. With the world wide web, I can bookmark (or save) the pages I’m reading and come back to them later. I can print them, too, for future reference, which is important to me. Although, after I print them out, I often forget that I have them, and I’ll end up printing out multiple copies of the same article that really excited me when I first found it. My hard drive is my saving grace. Having copies on my computer reminds me where I’ve been and what I’ve been reading, and when my bookmarks get to be too much to sort through, I can look at my carefully organized hard drive folders and see what I’ve already got in there. Then I can make a note that I don’t need to save another copy.

I still love to read… some things, anyway. I stick more with magazine articles and research papers and web pages. And even with them, I often need to go back and re-read them. It’s not that I don’t understand them. I do! I just get the facts and figures turned around, and I need to refresh my memory and make sure I understand what’s in them.

This is a huge loss for me. Or, rather, it would be if it still meant something to me. Nowadays, I’m happy just to get through the day without a major catastrophe. Reading — which used to be a necessity I could not survive without — has become a luxury for my leisure time… whenever I have it.

Advertisements

Making the most of my self-assessments

I’ve been doing self-assessments on a fairly regular basis, for nearly a year, now. I think the first that I started really digging in around this past February (2008), making notes about what’s been going on with me. It’s been pretty enlightening, especially considering that I had no clue to what extent my issues affected me… until I started keeping objective track.

I haven’t done the best job of staying current with my notes, but I think I’ve collected information that I can use, at present and on down the line.  I’ve resolved to do a better job, moving forward. Even if I just take a few notes at a time, that’s helpful. As long as I have it in a format that I can put with other notes. One of the issues is that I sometimes make handwritten notes, and other times I type them on a computer, into a spreadsheet or a document.

I have been trying to figure out a good way to make use of the notes I do have, so all this experience doesn’t just go to waste. I think I’m getting to a place where I can start collecting my materials and comparing my notes over time, so I can see if I’ve made any progress.

I think I have. I can tell the difference just in the past six months. People I used to annoy to no end have told me I am more communicative with them, and I make more of an effort to deal productively with them, than I did before — when I thought I was fine, but all indicators pointed to me having cognitive/behavioral issues I needed to deal with.

Collecting all my notes and looking at them, I get a little overwhelmed and agitated — angry, too — that I’ve got so much information in so many different places, and that I have to work so hard to organize it all and make sense of it. It upsets me that I’m so alone in all this — that I haven’t been able to communicate well enough with doctors and caregivers to convey the depth of my issues… that I haven’t even known how much help I really need, till lately… that even when I am able to communicate with people, their dashed hopes (about who and what I am and what my personality and life are really like) just get in the way and keep them from being really objective with me… that even if I did manage to communicate effectively with doctors and caregivers, due to recent cutbacks in funding, the chances of me getting help are even less than they were a year ago. After all, I’ve only had “mild” traumatic brain injuries, and I’m still employed, still have my house, still have my primary relationship more intact than many others (even those who haven’t sustained tbi’s)… so I need to step back and let the people with the *real* problems get access to the services they need.

And it’s true, really. I haven’t sacrificed life and limb for my nation. I haven’t had my skull smashed or pierced by a foreign object. I haven’t been in a coma. I haven’t been in the hospital. I haven’t had any medical diagnoses of tbi, because the people around me could never see that I needed help, and I even declined help when it was suggested. I haven’t sustained a terrible, life-threatening, near-disastrous, bloody open head wound that put me out of commission for weeks and months and required me to learn to walk and talk again.

I have been a lot more lucky than that. A whole lot.

But I still need help. And I have to find it somewhere. All the cumulative injuries over the course of my relatively short life have left traces – however faint – of their impact. From mood issues to communication issues. From sensory issues to behavioral issues. From my volatile temper to my willingness to just sit motionless for extended periods of time, doing and thinking absolutely nothing. I still have a long line of jobs that I couldn’t manage to hang onto — some of which I actively or involuntarily sabotaged, when the stress got to be too much. I still have the wreckage of plenty of failed friendships and people I’ve alienated without knowing what I was doing at the time, to show for my injuries.

I still have issues, and I need to deal with them, for the sake of my loved ones, friends, co-workers, home state, and country. I owe it to everyone to learn to cope with these issues as well as humanly possible, even if I cannot get “professional help” or insight and input by experts. Even if the social system is more than happy to let me fall through the cracks, I cannot — and will not — allow myself to go down easily.

I’ve got issues, so I guess I’ll have to address them myself.

I know it’s not “what the doctor ordered” for my condition. I know it’s fraught with issues and pitfalls and danger of just screwing everything up. But my doctor doesn’t really have time for me. None of my doctors really have time for me. Nor does my therapist. Nor does my neuropsychologist. Nor does the system. Nobody really has time for me — and I need a lot of time. It takes me a while to figure things out well enough to put them into words. And then it takes more time for me to work up the nerve to say the words. And then it takes more time for me to clarify what I’ve just said, because people often don’t understand me the first time around. Then it takes me more time to listen and understand their answers.

It just takes too much time for me to get my ideas across and be sure that people understand me. It takes a lot more time than anybody seems willing to give. But I’m absolutely not willing to let myself wither and die, waiting in the wings for them to notice me and take time out of their busy schedules to help me.

So, that leaves me with no alternative than to take matters into my own hands and address my issues (which I cannot seem to get across to others) in the best way possible. I know doctors look askance at this. I know this makes professional experts suspicious. Self-diagnosis is problematic. A proper course of rehabilitation should probably be put together by a qualified, certified individual with plenty of education behind them. And accurate measurements of my progress might not even be possible, coming from me. After all, I’ve got a history of brain injury.

But no one has the time to spare me — not the kind of time I need — so what else can I do? Just give up? Just take a ticket and wait in line for the next available expert, who’s probably all tuckered out from tending to the TRULY wounded? Sit around and wait to be noticed? Make a stink and force people to notice me? Pitch a fit, hire a lawyer, and expect the government to bail me out?

I don’t think so.

I have no choice. I have to deal with this myself. For better or worse, I need to take matters into my own hands and take full responsibility for my own healing, my own rehabilitation.

If the experts have something to contribute to the process, then great.

But I’m not holding my breath.

Now, back to my daily self-assessment… Today I’m doing pretty well… details to come…

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.