I’ve been lucky I’ve had the joy of mentoring people for years and hope my story is one that inspires for more years to come. Even in my darkest days I’ve found peace and love through inspiring and sharing with others. 17 years doesn’t seem like fare ago. I can remember laying up in ICU, being told the possibilities and laying there and telling myself in two years I will be walking. I was an arrogant nine year old with a wild hair not wanting to listen to the doctors’ prejections. And here I am. Walking without any aids (no cast, no crutches). I am surprised and not surprised, what others settled for but, want to show others that have encountered this beast that their is a life post bleed. I had a young lady that at the time was juggling her fence’s diagnoses of a bleed and the post bleed differences in his actions. She told me that he hadn’t been himself and I just enlightened her to a point of an AVMSUVIVOR. I later wrote to find out how things were. And she told me a month after our talk he pushed her beyond her limit and she left him and she had worried if she had done the right thing. And I enlighten her she was faced with a choice and choose the one that she felt was the best for her. I wish whomever reads this finds peace and encouragement to follow your heart.
Tex, how’s it going? I have been inspirational to 95% of my family & friends just by being alive. But that wasn’t enough for me, l COULD NOT settle for the forecast the doctors gave me coming out of the hospital with my paralysis & AVM. Through it ALL my immediate family (Father, Mother, Brother), My family (1st & 2nd wives, Daughter), they all said the AVM was “changing” me. When I asked them how, “they couldn’t put their finger on it”. Then 1 night a few years ago, my best friend (of 35+ years) and I were discussing that fact. And he said - After seeing you go through the hospital stay, the procedure & surgery, returning to school, returning to work, climbing the pay scale ladder the way that you did. AMAZING. But the second week in May, 2001, on the day I watched you get escorted from workI’d & knowing some of why. I finally put my finger on “IT”, your AVM is still active in your brain and it’s robbing you of you, bit by bit. I just hope you’re the winner when it’s over. You don’t have to be inspirational, any one who knows you at all, can’t help but BE inspired by you, every single day.
I’d say he put everyone’s finger on it. I had not considered it in that way.
I will always be forthcoming about my AVM with anyone. I think that’s only fair. I just wished my families would of worked out different.
I’m doing great. I know this is true Skippy, but had I of not began sharing this testimony, I know one of the contacts on here. Wouldn’t of been able to ease their mind by just reading testimonies. Hailey was a young woman that had just got married to her husband and was searching for answers after being told her husband had a bleed and he may never walk again by the doctors. A few emails later and she told me because of all the support they got he had progressed so much. After he had been released by the hospital, he had started slipping into manic-depression and witch led to their split up because of the bi-polar depression he had. She had informed me that there would be moments that she would see the man she feel dearly in love with but in a blink of an eye he would come upon a word, phrase, or tasks that would trigger his rage. This is why I’m an avid supporter and am constantly reading feeds and giving my input where I see fit.
Yeah I can see that, when ya put it that way. But, how do you keep from overstepping boundaries? Especially with someone NEW to the concept of having an AVM.
You never know Skippy, but I’d rather them ask and me give them what they asked for than step on egg shells and that’s all that anyone that I’ve encountered either on here or in Intensive Care Unit or Rehab have been thankful for.
I need some help this avm my son had is small it’s location is the issue right side of brain went for anagram to do radiation treatment in October had not been able to work I busting my butt for him to apply for SSI SSD and food stamps etc pd out approx 1300 for him last month now we r approach Oct and is to be approved for SSI not sure when checking will come for bills I am not feeling appreciate for all I am doin for him he depressed font want to be around people I am worried bout him but we end up in confrontation with issues on helping me fill out all this overwhelming paperwork. I can’t handle bein treated like crap when I doin it all he is very agitated hostile irritable attitude depressed can’t focus racing mind can’t eat I frustrated and can’t take his bs much more I wanna explode at him but try to hold back suggestions thx all
Hi! It’s great to hear from you! See if you can find the “+Topic” button at the top of your favourite category, or on the home page. There is a section about Spinal AVMs under the Types of AVM category. It would be good to hear your story, though I’m sure Tex will be happy to correspond with you, too!
One conversation that hangs with me, that I’ve posted many times was nicholett, she had just gotten engaged, and her soon to be husband encountered his, I still remember how frantic she was. Even after several emails she still had questions. I still have the emails. Later reconnected with her to find out that they had split.