Although, i don't much miss it! Seems to me, there is not much left for an AVM Survivor to be Vain about?? I have a nasty Crani sca, my neurosurgeon scalped me, and hemiparysis has left me nearly couch bound! I was formerly a party girl! Now I feel like a Senior Citizen! I need to box all that vanity up and dump it somewhere! Any suggestions? Yes, i am a little down today...
Thanks friends!

I've seen a a lot of beautiful women in my days. Some were in wheel chairs, some had scars on their head leaving a bald spot, some of them walked with a cane. My point is - vanity is over rated and a matter of perception. Plus, we are more cricial of ourselves than what other people are (wink). When I'm feeling down (and I do get that way sometimes), I remind myself that I could be in worst shape than I am. Yea... I have a talk with myself. LOL


Wear that scar(s) as a badge of courage!

Might look at it this way, anytime you do something that others might scoff at, simply shrug, laugh, and state: "Whaddya expect, I had brain surgery?" And if someone disses you, you can add "I had brain surgery, what is your excuse?"

Have a great vane (or vein--punny) free day.

Ron, KS

Cheater! No fair making me laugh!Tht may well be the Worst pun ever!! And I prefer "I had brain surgery, what's your f-ing excuse!"

Yeah, I'm not a punner. A sailing site I frequent, when one pun shows up, people jump all over it with followon puns. Lots of witty folks there.

Careful now...... I had a discussion with a member last night about posting profanity.

I think your's is safe enough though.

ron, ks

I'm unsure why, but I have a little bit of vanity left in me - it's like a spot that just won't come out no matter how consistently you try, unfortunately.

But there are way more important things than looks - if everyone else could just get on board with that, we'd be all set =)

Hey Nicole. What is considered outer beauty changes upon the whims of society. In past centuries…slightly overweight women were considered beautiful…now it is super thin women. So put on your Chanel perfume and celebrate your inner beauty. You have survived a horrible health problem…not to mention what happened in your personal life! You are special!!!

Now THATS a t-shirt! (Ok I wouldn't wear it in public) But I love it! Don't worry about the vanity thing, I like to say "hey I had a baby, it was like a peep show, I should have charged money..." I think the vanity went out the window then. :J ((((Nicole))))

Thanks Ben, too for making me laugh!!

I was completely bald for my crani. My husband asked that they shave my head as my hair was terribly tangled and matted (after 3 weeks in a coma) and no one could do anything with it.Being bald with a big as* scar half way around your head is quite humbling. While I was still in the hospital I started wearing scarves but once I got home I just let it all hang out, so to speak. I got stares, lots of them especially when I went to the pool. Considering what we've gone through, the stares were the least of my concern as was my bald head! My vanity went out the window after the birth of my first child. Once you have a dozen or so various medical professionals inspecting your nether regions, you kinda stop caring! I was glad not care about being bald and actually not very attractive. Truly those things don't matter to the folks that matter to you!

Two things that especially stood out after reading these posts:

1-I totally agree with Ben - we are far more critical on ourselves than others are
2-I'm lucky that I wasn't drinking milk when reading Trish's post b/c it would've come flying out of my nose.

Now, for my serious side - applies to many things in many ways - organ, please...

"You are More Than You Know

You are not your car. You are not your job. You are not your bank account. These things are useful, and they help you to make your way through the world, but they do not define you.

You are not your problems. You are not your failures. You are not your disappointments. These things challenge you and can ultimately help you to grow, but they do not have to limit you.

You are the child who danced in the sunshine, the young person who dreamed of changing the world. You are the admirer of all the beauty around you, a spirit who cannot be tied down. You are the best that you can imagine, a bundle of possibilities yearning to be fulfilled.

The shallow, superficial things will define or limit you only to the extent that you let them. Pay attention to them, but don't give your life to them. You are so much more."

-Ralph Marston

Thanks Julie, I have scrubbed and scrubbed-- got my head shaved, put on 40 pounds, added a limp, aphasia, and apraxia, not to mention scars like Frankenstein, and that Veinity-as Ben- so Punned! is Still there! what's a girl to do?? Oh well, like all things AVM, grin and bear it!! Thanks to all who allowed me these moments to wallow in self pity!

Julie I prefer to be drinking something carbonated (beer works very well) if I'm going to laugh. The feeling of that coming out of your nose is fabulous! And thanks for the Ralph Marston quote. It's lovely.

Which feels better? To have the things that make you vain, or your life? That's how I look at it. I have a 6" scar that is thankfully covered by my hair now that it has grown back in, BUT I also had the attitude that, you know what? I had brain surgery. If my scar bothers you, that's your issue not mine. In fact, my hair was so matted and tangled after surgery, I almost shaved it all off. Think of it this was, too...people will see your scars and ask what happened...this makes them more educated on AVM's and more likely to seek treatment if they have symptoms of one. Hope this helps....I'm dealing with my own issues with balance and light-headedness, so I know its rough. Hang in there.

Start a Tumblr or LiveJournal or WordPress blog about something vain and dump it all out there, I do! :)

I understand where you are coming from. I was never a big party person but I was in front of people a lot in both my job and in my part time fun stuff as a musician. After my stroke caused by my avm I lost use of my left arm and mg left leg is messed up meaning I use a cain and occasionally a wheelchair. I was very concous of this at first. Now I use it as an oportunity to tell people they can get through anything. I also found the online world is amazing as these things are not as important. I also found out my body might not be made for tv. But my voice is made great for radio. Really I am not kidding lol. I do a radio show every day now. So embrace thd new you. You will need to make adjustments based on changes to your mobility and that is ok. Just keep living and find ways to do what you enjoy whether it be virtual or in person.

Hi Nicole, I HAD the same thing happen after my Surgery. It took me about 6-9 months of physical therapy and a heck of a lot other stuff. I lost my Memory, had to learn speech again, etc. Patience was the hardest. Don't give up. Steve

Hi Nicole - I had a rare moment of clarity - is doesn't happen all that often so here goes...

Regarding dumping vanity, I'm pretty sure that Purple Heart or whatever won't take I'm throwing it out with some other baggage to make room for more important embracing my new or "now" normal.

One thing that I like about the "now" me is that I focus more and apppreciate what I'm doing and can be honest about a situation which is not always preferred by some, and I choose where and how to spend my time/don't waste time on what I now see as unimportant things...way different priorities now.

Whereas the old me could multi-task fairly well, I am now able to do one thing at a time without screwing it up disasterously; however, I now appreciate what I'm doing and seem to "get it" more...before it was like I was on automatic pilot. I'm no longer on auto-pilot, and I'm glad that happened whether I realized and wanted it or not.

Wow Julie, couldn't have said it better myself. Especially the auto-pilot thingey. While I still have to work on a lot of things, I like the new me too. Everything is making sense now and I like slowing down and looking around. Thanks for writing that. I hope everyone sees the positive in all of this. Or eventually gets there. (((( hugs ))))) :J

I can sympathize with how you feel, I do not have any per-say "scars" but because of swelling after my stereotactic radiosurgery my left side is paralyzed, I tend to feel much older than my age (20)my hip and knee are going bad, its difficult to live the life i used to, I worked at a camp for a summer and spent the whole time working on the waterfront teaching canoeing and kayaking, all of which i lost the ability to do with my hemi paraplegia. It has been difficult for me and i do not know what state you are in. I've had many days where i've felt horribly down, I've tried many things and I agree with Ben sometimes you have to remind yourself that many people are going through much worse. and there are other times that it just doesn't work. It sounds like you feel like you wish you could just get rid of your vanity, but I believe you shouldn't throw away your vanity, yes life is about more than looks, but looks are part of your life and taking care of yourself aesthetically is important, everyone just has a different way of doing it, what my suggestion is to accept the situation that you are in at your current state, If your surgery was recent hopefully you recover but there is always a chance that you will never fully recovered. Here's a thought you described yourself as a party girl and you like to spend time with friends is my guess, Call some of your best friends and invite them over for a small get together. and spend sometime doing yourself up, Its something that made you feel good about yourself, don't throw that away embrace the things that you used to do, but also don't take yourself too hard, and ask for help if you need it. ask your friends to bring snacks and soda (anything to take stress off of yourself) find a card game(Apples to Apples) or something else that everyone likes to do and something that you can do from the couch if you are unable to do much more, and have a nice night with some friends and like i said get all done up for this night, maybe do it once a month get your friends together in a way that is conducive to whatever condition you may be in. I know it may be difficult to explain to your friends what an AVM is but try to explain it to them if they don't understand or if it is too difficult to verbally explain i am sure there are resources on here that can assist you, another great resource to help explain to them how you are feeling is by using the spoon theory . It is a very well written article that helps many people. many times even after having surgery and the AVM is gone your body doesn't restore to perfect health. I know this is kind of a long response but it is good to accept at some point who you are after your AVM but it is also good to embrace who you were, once i learned to do this, i've figured out how to run, bike, and kayak one sided(its not easy its never easy) as well as i have started having bimonthly campfires, i used to be a wild sole, maybe in a different way than you, but i have found ways to still enjoy that life while sometimes having to take life slower. All my thoughts and prayers go out to you in your recovery and always know that there is always an ear willing to listen as long as you are willing to speak.