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AVM Survivors Network

Do you ever wish you had a sign?


#1

Sometimes I wish I had a sign taped to me. It would say something like “I have a brain injury. I am not stupid. I do not wish to be talked to like I’m a child. I deserve to be treated with respect. If you see me stumbling around or perhaps falling, it is because of my injury. I am not drunk and you could offer to help me get back up. If I seem to be confused at times when trying to find my way back to my table in a restaurant, it is because I get lost just that easily. If I bump into you in a store, please forgive me. I cannot see out of my left eye and I honestly didn’t see you. If my hands sometimes tremble, that is part of my new life. Give me a beer, it helps the tremors. If I don’t write neatly please understand that I am no longer able to. If I can’t help my daughter with her 6th grade math homework it is not because I don’t want to. It is because I can’t. I don’t understand it anymore. If I seem to be having trouble giving you the correct amount of money it’s because I don’t process numbers the correct way, please be patient. If I sometimes say things that may be considered inappropriate, I do not mean to be offensive I’ve just lost the filter in my brain that prevents things from coming out of my mouth at the wrong time. Accept my apologies”.


This was sparked by an incident at the gym the other day. I was into my second mile on the treadmill, going at a pretty good clip, 4mph, when I became dizzy. I knew I was going to go down so I was trying like hell to grab hold of the rail or something, without success. I flew (yes, literally flew) off the back of the treadmill and landed about a foot behind it. I immediately laughed because it had to have looked rather funny! But then I was mortified! How completely embarrassing and humiliating! People looked at me like I must be drunk or crazy or both. A couple people did come over and offer me help, asking if I was hurt. That is when I wished I had a sign so that I could explain!

Maybe I'll just get a T-shirt made that says "I have a brain injury, what's your excuse?"

Thank you all for listening!

#2

Rushing out to the custom made “T” shirt shop

Having them make the following,…

“I have an untreated cerebral AVM,…What’s your excuse?”

Trish,…I love it.

I also understand your blog entry and agree with you completely, you have my empathy.


#3

Oh Trish, how absolutely fantastic!! I know exactly how you feel about these situations, My AVM has been removed, however, I had brain damage and I am still trying to talk properly, read and write properly, understand what people are saying etc, etc, etc,. Like you, I am not stupid, I just can’t do things the way I used to be able to, including inappropriate language! on occassions. My surgery removed the pathway from brain to mouth and as you probably know, its really hard work for the brain to find new pathways! I’m going to work on the ‘whats your excuse’ as I don’t have a quick response these days, but as I said, I’m working on it. Take care and keep that wonderful (something) that you have. I look forward to chatting with you one of these days, luv, your friend, Lesley.


#4

Trish,

I hear you. It took a while for those around me to realize that I wasn’t ignoring them, but that my processing speed had just wound down. For what it’s worth your writing and your thoughts are so well put and clear as a bell. If you ever get that t-shirt made up, send me a large please.


#5

Moges, thanks for the compliment. And I see that you live in Silver Spring. I grew up in Maryland and most of my husband’s family lives or lived in Silver Spring. Used to go see his grandmother there all the time before she died. Just thought I’d share. Hope you are well!


#6

Boy can I relate! I want a sign that says “have some compassion and get out of my way”. I get frustrated walking with a cane (progressed from wheelchair to walker to cane) and people bump into me or push their way around me. I even had a lady yell “stop” as I was going to a stall in a public restroom. I asked her why and she said “the big one is mine” and proceeded to push past me to go to the handicapped stall. I jokingly tell my husband I want to put a cattle prod on the end of my cane so I can poke people in the butt when they deserve it. But honestly, I’m so happy (and lucky) to be alive I can’t get angry for long. I have learned to forgive the ignorant.


#7

YOU ARE SO RIGHT PEOPLE JUST DONT UNDERSTAND OR DONT CARE


#8

Oh, my dear Trish…They should move us all onto the same street because we could take care of each other! I had a grand seizure last week and think I caught a virus from going to the hospital… We really should have those T-shirts…I don’t think my neuro doc even understands me! Always know that I understand you and care for you! Love, Louisa


#9

ohh i was thinking about getting a shirt that says something in that nature cause i get those looks too they always look at me as i am drunk cause i walk like a drunk girl i am going to do it it will be custom cause it will say i have a brain injury i also had i stroke and 2 aneurysm please be patient with me


#10

I’m totally gonna get a shirt made. I’ll post of picture of it and y’all can get one too! Weezie, I love you my dear, you keep hanging on and I’ll keep hanging on too!


#11

Oh Trish, how well I can relate!
My sweetheart husband, Rick bought me t-shirts I wear w/pride that say, “I had brain surgery, what’s your excuse?” and “It’s not exactly rocket surgery!” And on days I’m not wearing those t’s, I also have the same expressions on buttons pinned to my purse. :slight_smile: Patti
Check out a great selection of AVM/brain t’s, etc. @ http://shop.cafepress.com/avm


#12

Trish you now have me laughing and crying with/for/about you !!
I just love you ! I can see you going backward and BOOM ! I can see it even though I am half blind because I have had the same experience . Treadmills can be tricky buggers .
Excellent ideas you have -a bit different from the awareness shirts BUT perhaps MORE effective is your idea …
Don’t tell anyone but not so very long ago I had a friend who had a who had a lovely long-sleeved fluffy white sweatshirt ( I never wore or wear sweatshirts before or since ) with beautiful pink ( I hate pink ) lettering and an adoreable drawing of a sweet little pig ( I like pigs ) that read , no I can’t write what it said . It was effective . Go for it woman . ENJOY !!


#13

Marianne, you’re going to have to tell me what the little pig sweatshirt said! I have a brain injury you know and I don’t always get subtle clues! :slight_smile:


#14

I love this! A lot of times I do wish I had a sign for a lot of things that I experience day-to-day as a result of my injury. It sucks that people are SO quick to judge someone and label them the way they do. [shakes head]


#15

I totally agree, my friend came to visit me and he took me to our little downtown area for a walk and I was bumbling around looking for a cool hat, and we were joking about how i needed a sign or a t-shirt so that when people looked all crazy at me, they would know what was going on and steer clear and not try to run me over or think i was the town drunkard in an early Irish novel…


#16

Trish,

I feel your frustration. Hang in there. Maybe you could get a tattoo in your middle finger and let people read it occasionally - Hey buddy - read this!!!


#17

I love your line, but I’d switch it to 'I had brain surgery, what’s your excuse?
I just love how you handle these things, very inspiring!


#18

Ha! James, I love it! I actually am in the finishing stages of getting my T-shirt printed. Had a friend do somethings with the font and color of the lettering now just need to get it to the print shop! I will take a picture in my fabulous shirt and post it here!!


#19

Trish,

I love this post. I like your sense of humor.


#20

A little warped sometimes James, but thanks!