[SpaceCadet]

Just thought I'd share some of the nice things people have said to me the past couple days.

Last night, my mom sends me a text that says "Well honestly it seems to have gotten worse instead of better and I don't think unless God heals you your gonna get better."....That's just awesome. You know, I do believe in God and when I broke down at the end of last month and begged him to heal me, I spontaneously started to heal/feel better...he gave me 5 good days....but still, that's not right of her to say that.

Today, while on the phone with an old friend...He says "Your not better yet? Damn, your screwed up for life."...I don't think he meant anything by it, probably just joking around...but things like that really get to me.

Such wonderful people I have in my life right now.

[themaidquit]

Sometimes people just don't know what to say anymore. I don't know them, but perhaps they just used the wrong choice of words. Remember, they're as frustrated with this as you are. Don't shout God out-he's a "friend" and he'll listen.

[xxxxcrystalxxxx]

Yes I get words all the time. Well you look good. Gee thanks. I feel like crap. Or if im having a really bad day my mom will say well you never listened to me as a kid. You need to rest. Well ive been resting for seven months. When you coming back to work. Your able to walk. Yes I can walk. I cant focus, flourescent lights kill me and multitasking and stress uh no. I melt under pressure. No one understands N after awhile they stop trying.

[SpaceCadet]

Originally Posted by xxxxcrystalxxxx

Yes I get words all the time. Well you look good. Gee thanks. I feel like crap. Or if im having a really bad day my mom will say well you never listened to me as a kid. You need to rest. Well ive been resting for seven months. When you coming back to work. Your able to walk. Yes I can walk. I cant focus, flourescent lights kill me and multitasking and stress uh no. I melt under pressure. No one understands N after awhile they stop trying.

Yep, no one understands us but US. Unless they go through it themselves, they will never understand. Sometimes I wish I looked like crap so people would know how I feel.

I'm at 7 months too. You said it perfectly...can't focus, multi-tasking and stress??? Uhhh, no. I know how you feel about the lights too. I've got my computer screen and smart phone on the lowest setting for brightness. On-coming traffic at night? Even the green traffic signal? No thank you. Sunglasses at night? You betcha.

[Mark in Idaho]

Nick,

First, you need to put your mother's comment in context. Since she is not home much, she only sees your symptoms when she is. Your talk with her and the others may have made her think you has gone downhill just because now she knows more of your complaints.

You should ask her what she observes in you that makes her think that.

Do you text with her during the day?

To all,

These comments from others are based on they total lack of understanding your condition. How do you expect them to understand your condition?

The only way they will is if you can find a way to explain it that they will understand. Everybody needs to find the explanation that works for their condition.

When I comment about my limits with driving, I have a simple explanation. I say, "I have very poor visual memory. If I am stopped at a stop sign and the crossing traffic does no to have to stop, first, i will look to the left to see where the oncoming cars are. Then, I will look to the right to see where those oncoming cars are. But, by then, I have already forgotten what I saw coming from the left. "

I have other such explanations but that is the one I use the most.

I also explain my inability to follow multi-step instructions from memory.

And how, I can be completely focused and functioning then have a sudden sound completely wipe my memory clear, as if my memory was a chalk board and the sound was an eraser.

We can find explanations that other will understand.

If any of you have symptoms you need help explaining, post them and I'll try to help you come up with an explanation.

Remember, we are the invisible wounded. If we were using crutches or a wheel chair, others would understand.

My best to you.

[SpaceCadet]

Originally Posted by Mark in Idaho

Nick,

First, you need to put your mother's comment in context. Since she is not home much, she only sees your symptoms when she is. Your talk with her and the others may have made her think you has gone downhill just because now she knows more of your complaints.

You should ask her what she observes in you that makes her think that.

Do you text with her during the day?

Well, I think she gets the idea that I'm getting worse because...well, I actually did. Let me refresh you on a couple things...I was actually fully functional about a month and a week out from my injury. I started working, hanging out, running errands...you know, regular life. Then in September, PCS showed up at my front door with in a vengeance. That would be one reason she would think I'm getting worse.

In October when I moved back in with her, I was able to watch TV, play video games, stay on the computer all day...then as of November, I can't do any of that without serious problems. I was also able to go to stores without becoming overwhelmed and confused...not anymore.

Yesterday I explained to her that PCS sometimes don't show up for months, that's why I appeared to get worse. I have no explanation of why I can't seem to watch TV or play video games anymore.

Your right, she's not home enough to see what's going on with me. She knows of my struggles though...when I start not feeling right I text her about it, or tell her when she gets home. She knows how many times I've been to the ER, she's taken me half the times. I think I've been to the ER more in the last 4 months than I did the first 3 months of recovery.

Yesterday I broke it down for her some of the things that bother me, such as the chaos in the house, arguments and stress, bright lights, TV, dogs barking, long conversations, etc. This is the first time I've told her these things bother me...that could be another reason she thought I was getting worse because she didn't know about those things to begin with.

I have not told her of my most recent improvements yet.

Originally Posted by Mark in Idaho

To all,

These comments from others are based on they total lack of understanding your condition. How do you expect them to understand your condition?

The only way they will is if you can find a way to explain it that they will understand. Everybody needs to find the explanation that works for their condition.

When I comment about my limits with driving, I have a simple explanation. I say, "I have very poor visual memory. If I am stopped at a stop sign and the crossing traffic does no to have to stop, first, i will look to the left to see where the oncoming cars are. Then, I will look to the right to see where those oncoming cars are. But, by then, I have already forgotten what I saw coming from the left. "

I have other such explanations but that is the one I use the most.

I also explain my inability to follow multi-step instructions from memory.

And how, I can be completely focused and functioning then have a sudden sound completely wipe my memory clear, as if my memory was a chalk board and the sound was an eraser.

We can find explanations that other will understand.

If any of you have symptoms you need help explaining, post them and I'll try to help you come up with an explanation.

Remember, we are the invisible wounded. If we were using crutches or a wheel chair, others would understand.

My best to you.

Your right about the explanations thing. I've found ways to explain some of my symptoms...and some of them are self-explanatory (such as stuttering, word finding, etc.)...but I have some very complex things happen to me that I can't even explain to myself. So for those things I just say "i'm having problems right now". Or if I figure out what it is that causes me to feel like that I just say "If I do that it will cause me problems.".

I said in another thread I wished I looked like crap so people would know how I felt. Maybe I should draw #'s on my face (like they do in cartoons) and wrap a bandage around my head.

[ginnie]

Some people just do not know what to say. Those are the ones that probably should be quiet. I am 60 female, and have no hair. I don't wear a wig, but a dew rag, cotton comfortable, and biker looking. People have asked me why I want to look like that. Did they think I didn't want hair? Have they ever tried wearing a wig in 95 degree weather? I sure have heard this kind of hurtful stuff too. God does not bring these illnesses upon us. I have also been told I must have sinned alot to have my problems, like I am being punished. I am sorry you have had to hear things that hurt too. Just remember we here at NT will always be kind and caring to you, and will try never to hurt your feelings. Lots and lots of good folks here. I have a good responce to some of that negative kind of talk, say nothing, and maybe they will figure it out for themselves. I care about you nwsmith. ginnie

[wakey]

Originally Posted by ginnie

Some people just do not know what to say. Those are the ones that probably should be quiet. I am 60 female, and have no hair. I don't wear a wig, but a dew rag, cotton comfortable, and biker looking. People have asked me why I want to look like that. Did they think I didn't want hair? Have they ever tried wearing a wig in 95 degree weather? I sure have heard this kind of hurtful stuff too. God does not bring these illnesses upon us. I have also been told I must have sinned alot to have my problems, like I am being punished. I am sorry you have had to hear things that hurt too. Just remember we here at NT will always be kind and caring to you, and will try never to hurt your feelings. Lots and lots of good folks here. I have a good responce to some of that negative kind of talk, say nothing, and maybe they will figure it out for themselves. I care about you nwsmith. ginnie

You have a right to be furious at people who claim that some organic brain injury is the result of sin. Before modern medicine--before germ-theory--the same thing was said about nearly all disease. We now know that people had no answers so they made them up. You are injured because of an impact to your brain that occurred by chance; you are not injured because of any "sins" or nonsense that people project onto you. Ignore people who tell you this. You should not have to deal with them. Seek out those who comfort you and aid your healing. Hopefully the science on these injuries will pick up soon. Incidentally, you may have doctors who behave just as badly, telling you that you are merely depressed or it's "in your head." They, too, cannot understand what is going on, and so blame the victim. They should be ignored also. Seek out doctors who have experience with TBI patients. Medical technology is not yet good enough to measure brain injuries unless they are quite extreme.

In any case, surrounding yourself with loved ones is a good start.

[xanadu00]

Originally Posted by wakey

You have a right to be furious at people who claim that some organic brain injury is the result of sin. Before modern medicine--before germ-theory--the same thing was said about nearly all disease. We now know that people had no answers so they made them up. You are injured because of an impact to your brain that occurred by chance; you are not injured because of any "sins" or nonsense that people project onto you. Ignore people who tell you this. You should not have to deal with them. Seek out those who comfort you and aid your healing. Hopefully the science on these injuries will pick up soon. Incidentally, you may have doctors who behave just as badly, telling you that you are merely depressed or it's "in your head." They, too, cannot understand what is going on, and so blame the victim. They should be ignored also. Seek out doctors who have experience with TBI patients. Medical technology is not yet good enough to measure brain injuries unless they are quite extreme.

In any case, surrounding yourself with loved ones is a good start.

I couldn't agree more. We have such a strong sense of reciprocity that it is very difficult for us to make sense of suffering and tragedy when they happen to people who don't deserve it. The inability to accept undeserved suffering is so pronounced in some people that it leads them to postulate that the suffering person must have done something to deserve it. It's just too hard for these people to accept that horrible things can and do happen to very good people--and indeed, that they happen indiscriminately to all kinds of people.

Having said that, I don't think this explanation for why people say such things is any kind of an excuse for doing so; to add the insult of attributing a bad character to someone who is suffering horribly is utterly despicable in my book. It's quite bad enough that many undeserving people have to deal with tragedy and hardship; it is far worse when others exacerbate this injustice by blaming people for the horrible things that have happened to them.

[EsthersDoll]

Originally Posted by xanadu00

I couldn't agree more. We have such a strong sense of reciprocity that it is very difficult for us to make sense of suffering and tragedy when they happen to people who don't deserve it. The inability to accept undeserved suffering is so pronounced in some people that it leads them to postulate that the suffering person must have done something to deserve it. It's just too hard for these people to accept that horrible things can and do happen to very good people--and indeed, that they happen indiscriminately to all kinds of people.

Having said that, I don't think this explanation for why people say such things is any kind of an excuse for doing so; to add the insult of attributing a bad character to someone who is suffering horribly is utterly despicable in my book. It's quite bad enough that many undeserving people have to deal with tragedy and hardship; it is far worse when others exacerbate this injustice by blaming people for the horrible things that have happened to them.

Yes, I agree. I was horrified to read some of what others have been told by their doctors and family members and friends in this thread and similar ones.

I was literally laughed at because my speech was so messed up early on after the accident I was in by the manager of the HR Dept where I work. I've got a lot of icky stories of how offended I've been through this whole process. I just don't like to rehash it, it doesn't make me feel good at all. I really prefer to focus on the good people in my life and the wonderful generosity and understanding that amazes me.

But several people compare what I'm going through to the normal aging process, without really acknowledging that it's happening to me about 30 years earlier than it would have normally and not really thinking about if that's the case how I might be in another thirty years! I read in a book called Over My Head written by an MD who was diagnosed with PCS who couldn't work for over four years because the impairments she was dealing with, that doing that takes away the right of victims' sense of loss and severely reduces what we are going through unfairly. But she even wrote about it because it happened to her to. It must happen to many of us.

I spoke to my therapist about this very thing the last time I saw her and she says it comes from the way our minds work. So, when I tell someone what I'm dealing with, they try to understand and relate it to something they've gone through.

I really dislike it when people compare PCS to a hangover. For me, it's nothing like a hangover. It is completely different. Hangovers are not debilitating. Using that as a comparison makes others wonder why we are so debilitated if PCS is similar to a really bad hangover. Somehow they need to know how horrible and awful it is and comparisons don't cut it for me. It's not the aging process and it's not a bad hangover, there is no comparison. TBI is its own beast and should be treated as such.

My heart bleeds for people dealing with this all by themselves. It also infuriates me that anyone would have to.