Well, why didn’t they just SAY so?

People need to talk so others can understand
People need to explain things so others can understand

When I was a little kid, I had trouble hearing. I could pick up a full range of volume just fine, according to the tests they gave me, but I had a hard time distinguishing between sounds.

“S” sounded like “F” and the soft “TH” to me.

“B” sounded like “V” to me.

Unless I saw a word written out, it was sometimes hard for me to understand precisely what was meant. Based on what I heard, it could have meant anything, really.

I was also a very literal child, who didn’t “get” the whole slang thing. That 1970s song “Convoy”, which was an extended conversation between truckers using their trucking slang, was pretty interesting for me to listen to. I had all sorts of unusual ideas about what exactly was going on there, and when my mother asked me if I knew what the song was about, I said, “Sure! It’s about truckers going bear hunting!”

She gave me a strange look that made me think I was probably wrong — and sure enough, the “hunting bear” reference was really about truckers doing battle with the highway patrol.

I also had a lot of disagreements about what people were talking about and what they were saying to me. I got my letters mixed up, because they all sounded the same to me, and I made up my own (stubborn) mind about what words should be used — and how.

I remember one time I had a pitched battle with my mother, who told me that the name of one of my school friends was “Valerie” — with a “V”.  I heard “Balerie” — with a “B”. Never in my life had I heard her name pronounced with a “V” sound, so being the stubborn kid I was, I argued for quite some time and got very, very angry, that my mother had it wrong.

She kept repeating “Valerie… Valerie… Valerie”, drawing a “V” in the air with her finger, and I got angrier and angrier.

Because that wasn’t what I experienced. It wasn’t what I heard.

I also had trouble pronouncing words. I had a “lisp” when I was little, partly because I didn’t realize you had to form “F”, “TH” (the soft one), and “S” differently with your mouth. I thought they were all the same sound, so I picked the one that was the easiest for me to tolerate.

Part of the issue was that I had trouble with my ears — they were so hyper-acute, the sound of an “S” literally hurt them. It was painful to pronounce “S”, so I tried to soften it, like a “TH”. And of course, that was wrong, so I was in speech therapy for some time, to try to correct it.

That was rough. They took me out of my regular classes, and not only was everyone staring at me, but then they walked me through the halls of the massive school that seemed so cavernous and vast to me. I could never remember how to get there, and I got lost a number of times. People got upset with me, because apparently it was easy to get to the speech therapist’s office. Easy for everyone else. I got turned around and couldn’t find my way. And the speech therapist had to keep coming to my classroom to show me the way.

So, I figured I must be an idiot.  Such a simple thing … and it was so hard for me. There must have been something really wrong with me.

I also couldn’t makethe sounds right. The speech therapist kept trying to get me to sound out the sounds, but I couldn’t do it. I couldn’t tell that there was a difference between them, and try as I might, I couldn’t make the connection between what they were telling me to say, and what I could/did say. It all sounded the same to me, and nobody explained to me the way to shape the sounds in my mouth, so I could say them correctly.

After some time trying to work with me, the speech therapist gave up. They may have suspected I just wasn’t trying. Or they couldn’t justify spending any more time with me, because I wasn’t making any progress. They may have also believed I was deliberately being difficult.

There were a lot of things that were pretty challenging for me, which I “should” have been able to do. But I couldn’t. And nobody seemed to know how to help me.

What really would have helped, is if someone had just told me that you shape words different ways with your mouth. Everybody seemed to take for granted, that everyone knows that. But looking at someone’s mouth from a distance, you cannot see the position of their tongue or their teeth or even the subtle differences in their lips. “B” looked pretty much like “V” to me. And even though “TH”, “S”, and “F” look different from a distance, I could not tell the difference in the sounds, so I could never tell if I was saying it correctly.

So, I went with the sound that was the least painful — the “TH”.

Eventually, it dawned on me that sounds were shaped differently, and if I just formed them properly, even if it didn’t sound right to me, others would get it. I have no idea if I reached this conclusion myself, or if it finally sank in, after I was on my own and the lessons of the speech therapist finally sank in with me. I used to think I figured it out by myself, but now I think it could have been a delayed realization.

In retrospect, it would have been really helpful, if someone had just sat me down and explained to me slowly and carefully, in very clear and logical terms, that words and sounds were produced with certain positions of lips, tongue, and teeth. And have me practice making those sounds with my mouth. Even if I couldn’t hear the sounds properly, I could know that I was forming the words correctly, so others would understand me. Even if I didn’t get it, at least someone would. And 1 out of 2 is better than 0 for 2.

Then again, they may have tried. But I was a tough case. I had trouble paying attention. If people didn’t explain to me why we were doing something, I lost interest. I was also overwhelmed and stressed from the walk to the speech therapist’s office, so that made it hard to concentrate. Plus, I didn’t know why I wasn’t getting it. I just didn’t know. And neither did they, apparently.

The whole speech and articulation thing just messed with my head when I was little — to the point that I started hyper-articulating things, and I became pretty OCD about making sure I was pronouncing words exactly right. It’s one of the reasons I can pronounce foreign words pretty well and also simulate a non-English accent pretty well. I get extremely nervous if I don’t pronounce something right. It’s a visceral reaction to past bad experiences, I guess.

As a kid, I had so many failed interactions, thanks to my speech and comprehension difficulties. On my first day at kindergarten, I couldn’t articulate to the teachers what my address was, so they couldn’t put me on the right bus. And after my first day of school, ever, when my mother was waiting at the bus stop, her firstborn was nowhere to be found. The school called to tell her they were giving me a ride home, but my mother almost lost it when I didn’t get off the bus.

I had lots of trouble with kids at school, too. I tried to talk, but I couldn’t seem to make myself understood. I felt like I was babbling into the wind, and it might have sounded that way to them, too.

Ultimately, when I could read books, I turned to them for company. That was enough. It was more than enough for me. Books didn’t make fun of me, they didn’t look at me strangely, they didn’t correct me, they didn’t test me to see if I got it. They were just there, waiting to impart their knowledge. Of course they never told me how to pronounce the big words that I found there (I thought rendezvous was pronounced renn-dezz-vus, until my dad told me otherwise), but then, that never mattered, because I had the meaning in my head.

I swear, I really don’t know what is up with people who can’t be direct and just come right out and tell people what the deal is. Hinting around and intimating makes me nuts.  It drove me nuts as a kid, and it still does today.

If I’m messing up, just tell me. I’ve done it before, and I’ll do it again. And it’s a heck of a lot easier to deal with, when you have direct information, rather than trying to “go easy” on me. Easy is hard. Direct is simpler.

Don’t make me guess — just tell me what the deal is.

And then I’ll deal.

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84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

Emotions/Moods
8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

Mental
34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.