I've spent the last 25 years of my life in my own personal hell from a AVM rupture. I'm not a prude and I believe in "going for the joke" but I feel as though this article should not have been published on this site. I've done much work in the neuro community with doctors and patients to help bring awareness to the seriousness and complexity of life after surgical removal of an AVM in the brain.
I'm sure that we are all aware of the hazards of a dangerous spike in blood pressure and the effects it has on vascular anomalies. Do we really need such a detailed account published for the world to poke fun at? I feel that all of the validity that we as patients have tried to convey to our docs is now just a joke. I'm not judging the author for writing his story, he can, that's his right, just as it's my right to comment on it. I just don't feel that it should have been published in a group that is trying to bring awareness to a very serious condition. Thank you.
I echo & applaud my long-time friend, Mike - I couldn't have said it better.
I too am not trying to judge or criticize the individual. I too like a good, healthy laugh...am not a prude.
Also as a 25 yr. survivor of innumerable bleeds & 4 surgeries, I've lost count of the letters (snail mail & emails) to drs, media (local - BIG names) & to many, many health-related organizations re: the struggles of life with vascular malformations & the more recent development of central pain syndrome, CPS, secondary to a thalamic bleed. Yet have had very FEW responses.
So yeah, this article seems more of a mockery of what many of us are trying to do as individuals & as a group to raise awareness.
Wow, I totally appreciate your comment though I am shocked at the amount of negativity weighted in your words. There are quite a few reasons why I posted this article, sir. I would like to point some out for you.
One: look at the responses...survivors appreciate truth in the risks we face daily as "carriers" of such an anomally as an AVM
Two: Although you see it as a joke, it was nice for me to read that I am not the only one who had a massive stroke during climax; I'm sure others on this site appreciate the same knowledge. Masturbation is a natural act that we should not be ashamed of and having it be known that we partake in self indulgence can be embarrassing on its own...imagine having it publicized to your family by a neurosurgeon while you're hooked up to machines in the ICU that that was what put you in the ICU in the first place
Two.A: This article helps people who may share a similar experience (like myself) to know that hey, it happens, there's nothing to be ashamed of.
Three: I thoroughly enjoyed his description of the actual stroke. You might want to view this video http://www.youtube.com/watch?v=UyyjU8fzEYU Jill describes her stroke as she was concious during her experience. This man gives his description of his stroke, making the same statements that I myself and Jill experienced. A separation of mind from body. A sort of clear vein of thought that occurs while your body experiences this sort of panic mode the rest of you doesn't register. He describes this by explaining his odd desire to dress himself; again, something I have also experienced. Jill described it with an attempt at making a phone call.
Four: His description of how he felt ill but was able to brush it off with other explanations, similar to a discussion I had posted a while back..."did you know?" was something like that for the title. He experienced the same symptoms I had days before my own stroke and he touched on signs such as numbness after climax, something I also experienced. He also mentioned how the day before or near about that time, he had been feeling ill. He described the same feelings I had the night before my stroke.
So you see, sir, while I appreciate your comment, I had other reasons for sharing this article besides the fact that he was brave to tell an audience, any audience, that he decided to masturbate before his brothers wedding, leading up to- with comical description, a stroke and the immediate experiences thereafter. If people wish to poke fun, that is a consequence he must face but I as a survivor am grateful for other survivors like him who have the courage to stand up and say, "this is what happened to me." We should not be ashamed of our bleeds, or our avms, or the residual, lingering effects of them, we should accept them and share them; that is the only way to spread awareness. Sitting in your house reading medical journals does nothing for anyone but you and you alone, sir.
I'm sorry you have suffered for 25 years, I too am suffering, we all are suffering in our own ways, but I don't think it is fair of you to think we should muffle our experiences due to censorship. We should also take note that although we face some of the sharpest mountains, some of the most difficult challenges, there is nothing wrong with approaching it with a smile and a sense of humor.
I apologize for offending you with this very public story this man was not afraid to share. But I think that you made a very valid point in stating that despite your various rare conditions, your history, and the many, many attempts you made at bringing your story to the public, you've only had very few responses. This man has been able to publish his story in both an article (actually three articles since I found one in Huffington Post, one in yourtango.com and one in Salon)and a book (one I plan to purchase through Amazon). I believe that his honesty, his story being told WITHOUT censor and with only through the view that he experienced, made his story more real, more relatable and more effective in spreading awareness. I disagree with the mockery statement because he is not mocking himself or other survivors; he simply shared his story and what a success of a share it was! If even to just a small crowd, his honesty and truth to his own situation allowed him to enlighten others. And Huffington Post is a good way to spread word as it has quite a large audience.
Hummm, I'm not sure what to post as I'm not trying to "stir" the pot. However, as a person that has an AVM in an eloquent area I have some thoughts on the posts. First I think it's nice that none of us are "judging or being critical". However, the article was NEVER published on this site. A link that connects you to the article clearly states "self-love and orgasm" in it's link line. Personally, I don't care if anyone is a prude or not as long as they aren't my partner- it's none of my business. Kristi did not write the article she merely posted the link and each person got to chose if they wanted to click it or not. This is a place for " AVM awareness" yet an article/book that has been written is now considered a mockery? Mike, you are judging the author based on one small portion of his book. Have you read his book? I understand you are frustrated about what you read and I'm sorry you feel that the world will poke fun at people with AVM's, I disagree. I think people that read the article will google/search for more information about AVM's. As for the part, "I feel that all of the validity that we as patients have tried to convey to our docs is now just a joke." I'm confused about the "validity" part. As for using the term "we" as in,"I'm sure that we are all aware of the hazards of a dangerous spike in blood pressure and the effects it has on vascular anomalies.", I have must be the only one that didn't know that sex could cause a bleed and I am grateful that I now know. Thank you Kristi. I wasn't given a list of "Do's/Don'ts for having an AVM so I will be sure to ask my doctor to make one for me. I think there are many ways to advance AVM awareness, his book is one way. Have a good evening~
I'm sorry if you misunderstood my comment but having a massive cerebral hemorrhage in the prime of your life or at any time for that matter is a serious occurrence. I never viewed his experience as a joke, but those who haven't experienced what we've all been though, might. I've also never stated that I sit in my house reading medical journals ma'am. With all of my deficits I still lead a very productive life. I'm not ashamed of my bleed, there's no reason to be and I'm happy to tell my story whenever I can to whom ever will listen.
I don't know why you are shocked by my negativity. Nothing positive has come out of my AVM journey. Maybe you were lucky enough to come out of it ok, and I hope that you did, but then again, the two main factors still exist, size and location. Mine was very large and very deep and included 2 nidi.
I fought very hard to get out of the hospital suffering set-back after set-back. I've also fought very hard to try to resume some normalcy in my life and make something of myself. I'm sorry if I can't find any humor in any of this.
My comment still stands ma'am, I don't believe that his story should have been posted on this particular site, there's plenty of places to post on the internet.
But then again....this is just my opinion. Thank God we still have them but unfortunately, some of our survivors don't. I've visited with AVM patients in their hospital rooms and at their homes. Patients who can't walk or speak or write down their feelings, maybe I'm trying to be their voice too.
Wishing all of you the very best with your journey.
I apologize that you misunderstood not only my comments but the entire reason of the post as well. I relate to this article and the author of the book because we have similarities in our cases. If I cannot share something or someone I can relate with as a survivor with other survivors then what is the point of a survivors network? I found his story, however brief in the article, to be of some comfort with an uplifting note. If I can benefit from his story by relating it to my own story then maybe others can benefit as well. It is a sensitive topic, obviously, and an embarassing one that people might not have the courage to speak about when it comes to their own recovery. Every time I tell how my avm ruptured, I have to lie; I feel like I am denying myself a vital piece of my own recovery. How can I move forward if I cannot accept what happened to me, when it happened to me and how? If one man can open up about his experience without shame, then why can I not revel in his confidence and maybe share it along the way? Not sharing, kind of defeats the purpose of being a part of such a huge network.
My experience is still fresh compared to yours (bleed: March 2011, crani: May 2011) so maybe our phases of recovery are too far off from each other. I feel it is nice to see others get their story out there and like to read of others journeys (I have posted a few links before). I also feel it is important that others know they are not alone in whatever phase or stage they are currently in or going through.
I congratulate you on your own recovery and returning back to a productive lifestyle, while I, in my infancy-like stage of recovery, am still learning how to accept the many different levels that my stroke and avm has affected me, my family, my life. It is an emotional journey and sometimes it's a lonely one. I am not as active in this network as I used to be since I discovered that avm ruptures while pregnant....not as common as you would think; long-lasting, chronic hemiparesis in your twenties....also not very common. Having a stroke in your twenties while enjoying a moment to yourself...not something people like to discuss...you, sir are clearly the evidence of that. So forgive me, if finding something I actually connected with that I could share with in this network of fellow survivors offended you.
I thought I had experienced some sort of problem with my AVM many years ago with a long in the past girlfriend during a love making session and didn't have any problem discussing it with the medical people I came into contact with, it did occur and I thought it might be important. That's a bit different than bringing it out into the world for everybody to see. There was a time when people were a bit more modest.
I guess with the "we all know goes on in the bathroom" mentality of this culture in which we are surrounded, there is no aspect of our lives which we should expect to remain private. I'm 51 and still giggle when someone uses the word "butt joint" or "Uranus" or says something like they fell down and put a crack in their ass.
I find other people's sex lives or lack of sex lives quite uninteresting.
Kristi,
I was one of the other members who was not only NOT offended, but pleased to see a link to this article. I too suffered a bleed, and no Mike it is nothing to laugh about and yes I have been where you've been. My deficits are many as well. I don't think anyone was intending to make a joke out of our condition. One of the main purposes, at least in my opinion, of this site is to bring awareness to the many complications that can occur when you have an AVM, ruptured or not. It's clear that many doctors do not explain this particular risk to their AVM patients. This article could at least help someone know what to ask their doctor. It's also clear that many people are not comfortable discussing sex or any part of sex with others and that's ok too. I think this post and the accompanying article are very valid in this forum. Again, that's just another opinion.
Am I the only one that finds it disturbing that people are so offended by this article???? I would like to say, even it makes this thread get deleted or forces whoever to ban me from this site, that if a survivor gets shamed for agreeing with this article or finding the humor in it relatable then this is not a true survivors network...this is completely humiliating! Yet again....again I am pushed away from this site, feeling even more of an outsider! I have no one to discuss my hemiparesis with here, I bring up my depression, you people tell me to see an effing therapist. I get migraines, you people tell me to go see a doctor; as if I have the money and resources to bring my crippled ass around town every time I feel "off." If I have any questions, you people tell me to go to the stupid search bar. Wtf is the point of this network??????? If we were all people in a room in plastic chairs, with horribly stale, overheated coffee, we would discuss this issue the same way acoholics discuss embarrassing, painful things that happen to them or that they do (like pooping themselves in public) while in a drunken stupor. And please, spare me the "we are not drunks, what a disgusting comparison" lecture; yet again, you would be missing the point if that is all you can get out of that statement. The point is, I come here to share things I cannot discuss in my non-virtual world because there is no one there who can understand or that I can identify with and that is why I come on this site that is seeming more and more pointless every day. This is just....I am so embarrassed, humiliated, and angry. You people make me feel so unwelcome. Where am I supposed to go now? I had a massive stroke during an orgasm and I have felt like I should be ashamed of it on my own. I have discussed it before on here pretending like I'm not embarrassed in the past thinking it would help me accept and conquer one of the more embarrassing aspects of my bleed. This article let me know that I am not alone in the cause of my bleed nor am I alone in finding humor in it, I simply thought others would find the same comfort in this knowledge and realize that not every bleed happens in the most discussable ways (like weight lifting or bungee jumping or while watching Oprah) yet that shouldn't mean it can't be shared or discussed. Well, I guess I was wrong because apparently, no matter how strong it strikes a chord within us...we can't discuss it. Like I said, this is embarrassing and I have never in my life felt so ashamed of adults before in my life.
And I'd like to add, for anyone to assume that I have no clue how serious a stroke can be, please never comment on anything I post again, if I ever do come here again. I know full well how serious a stroke can be. I feel it every morning when I get stuck in my covers, I feel it everytime I get upset because it's difficult to brush my hair, I feel it everytime I smile even though I'm grinding my teeth to stop it because I cannot control all of my facial muscles. I feel it everytime I watch my husband hold our 18 month old baby and I fight back tears because I have never held him the ways he can. I feel it when I wake up with a sharp eye because a migraine is already setting in. I feel it when I get denial letters in the mail from foodstamps because I misunderstood the same directions I've been reading for years and filled out the papers wrong. I feel it everytime I drop my cane and wonder if I should keep walking or take the risk and bend over to pick it up. I feel it everytime I have to stop having sex because my right side went tingly and I've lost all movement in the left side. I deal with the many effects of a massive stroke every single day so excuse me for finding a smile in a story so similiar to my own. No, you know what, I'm not sorry. You people should be sorry. I should NOT have to defend myself like this. I have been upset since last night and I keep trying to be strong and not bite back but now I'm stressed and in dire need of a huge vent. This is...this is just....I cannot find the words, I am at a loss. Thank you Mike and Patti for your negative comments, thanks for reminding me of one of the many reasons why i stay away from this site; thank you for pointing out that even though we are supposed to support each other..it only works for some cases and not all. Thank you for not keeping your negativity to yourselves and for making me feel like I should hide in a corner with my pain, my misery, my loneliness and my soooo inappropriate yet real situation or whatever the hell you want to call it. Never in my life.....
Thank you Trish for your comment, you must have written and sent it during my long rant:)My last comment on this thread was not meant for you or the others who have been incredibly helpful and open about my journey and theirs as well. I wish more people could be open like that; again thank you for your comment.
Hmmmm⌠I have to agree with ewillis. AVMs are serious; there is no doubt about that. Some have been through the ringer trying to just cope with their AVM. But looking at the big picture, the goal here is to create awareness of AVMs. When you say cancer, everyone knows what that is. Not so much when you say AVMs. I did read the entire article (and may even read the book). I can not speak for everyone, but I do not agree that we are mocking AVMs by showcasing a socially taboo topic. In my opinion, the opposite is resulting. From the perspective of others not afflicted with this, not suffering, and not even aware of its existence, (although offensive to some) this is promoting awareness through exposure. I am 48 years old and I strongly feel that too much (sex) is displayed to an inappropriate audience, but I did not see that here.
Let me just add that many affected by AVMs are understandably mad and their world seems turned upside down. Yes, there have been brain surgeries, complications, and substantial life changes as a result (I am currently living with my elderly parents). Yes, sometimes independence is lost as a result. Yes, people are understandably scared and starved for accurate information about what to expect on this journey. But how we react to these obstacles is our choice as well. I have been known to focus on humor rather than the seriousness associated with AVMs. I do not wish to downplay the seriousness (I am well aware of that), but in my opinion members having been exposed to doctors, procedures, and many other things and see things from this perspective. While I do not condone downright mockery of a very serious affliction, in my opinion laughter is the best medicine (lacking for many) and in this case, so is exposure to a potentially very serious issue. Thank you again Kristi for sharing this with us. Ok, that is about as serious as I get. Everyone hug⌠lol. :J
I don't understand what all of the hoopla is about, concerning this article. I find it funny and educational at the same time. I said it before and I'll say it again -- I'm glad Kristi brought this to our attention. . . She did it in a respectful manner. The title itself (of the links) told us what it was about. We had/have the choice to look at it or not. Right? You have to admit - the title got your attention, didn't it? (wink - :))
Ben
Suzy, once again...I could not agree with you more!
Thank you very much for your feedback. I agree with both ewillis and you. And you hit the nail on the head, this article has brought awareness, moreso than anything/anyone I have seen. Even the woman on TV in the wheelchair (forgot the name of the show) who had a spinal avm isn't as available to everyone as we as survivors might like (the show is on Sundance if it's even still on). By the way, I found this article originally on Facebook. The Huffington Post Weird News had posted a link to the story which led me to HuffPost, leading me to yourtango and then onto Salon and finally a link to his book...how many non-survivors, non-avmers, did it reach with a headline like that? Just in terms of spreading awareness, that is inspirational. His freedom to discuss has opened a path to awareness if even just a little. And like I said before, his ability to discuss the "cause" of his rupture encourages me to discuss my own "cause." I should not be ashamed and though I may not ever acquire any amount of fame or even the slightest nod in my direction by anyone of title or importance, his story lets me know that my story is just as important as anyone else's and just because I double-clicked my mouse one morning before breakfast doesn't mean I don't have a right to tell my story exactly as it is. It may be unconventional to talk about masturbation but he's acheived exactly what every avm survivor sets out to do: bringing up awareness. Even just the mere mention of the scandalous act of OMG masturbation brings about controversy and more attention and tada! more awareness to the bottom line...avm's. More awareness equals more curiosity meaning more research and more knowledge. His doctor told him avms form in the third trimester of pregnancy...I didn't know that. What did someone clueless about avms learn from this article and/or book? This man should be applauded.
I am in agreement with Ben and Kristi and so forth. I actually enjoyed reading this excerpt from his book and I may also decide to read the whole thing. I am in the middle of "My Stroke of Insight"right now and was looking for another AVM book to read.
To be honest, I found the humor in the story to be, well, refreshing. While my AVM hasn't blead, my aneurysm DID bleed so I have suffered from a brain hemmorage, spent 2 weeks in the ICU and underwent brain surgery to fix the problem. While my physical deficit have been few if any, my enotional deficits are HUGE. I am scared every single day that my AVM might rupture, I am afraid of being alone. The only thing that seems to help me deal with these emotional issues is humor. To me laughter is the best medicine. I don't think that the author was trying to minimize what people have been through after suffering a bleed, but he wanted to be candid about what he was doing when his bled and bring some humor to the incident.
I was going to just leave this alone after saying what I had to sayâŚhowever the ânothing positive has come from this AVM experienceâ really struck a nerveâŚso here I am once again.
I canât speak for others, but depending on oneâs faith, masturbation is an issue; also, the profanity expressed might be an issue for some.
Anyway, I just read something on FB that made a huge amount of sense to me: instead of saying something is âgoodâ or âbadâ, look at it as either being âhelpfulâ or âunhelpfulâ.
Even though all might not agree on the âtechniqueâ or language, I definitely think that this information is helpful.
Seriously??? Wow!
Have a nice life guys....
I don't think there was meant to be a hoopla (LOL, rarely hear that anymore LOL). I most likely blew it up but I can never just be brief or generalize, I must always go into full detail. I may have started out with respect, and Lord I tried keeping it that way, but I let it get to me...obviously. It just really bothers me that one commenter goes out of their way to say the author has his right to write his book yet it's inappropriate to share a summary of his story dealing directly with avms, strokes, a very personal and relatable topic to the poster (myself), and even another member of this site(the author). I cannot speak for the author but I will say, his story, and mine as well, do not take out the validity of anything any other patient has tried to convey; I felt completely disrespected...sorry to you and anyone else blown away by my comments:)
It's strange you say that about the "nothing positive" remark because I keep forgetting to make my own comment on that. My life sucks, it literally sucks. Everyday I am in pain, I lost all of my friends and even some family because of this. The timing was horrifyingly perfect and yet the worst. I almost died while alone with my 3 year old son who saved my life. I come with equipment, my husband has to help me dress at least 3 days a week, depending on tone and spasticity in my arm and leg. I am forgetful, I am always confused when I'm not in my house. I actually had to consider an abortion, after 2 seconds of thought...I knew I couldn't do it, however. I have to be constantly aware of everyone and everything because no one ever sees me and that's not easy when you're so forgetful and already have a long list of things to remember just to walk. And yet...I am able to find positivity in all that I lost. I quit smoking. I know where I stand with my husband in our relationship, which is miraculously more solid than when I was a hot 23 year old size 0 with perky boobs and two working legs and arms...and a job.
I have long negative steps, but I have even longer positive ones, I just had to find them and remind myself of them every other minute or so:)