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AVM Survivors Network

Two Decades

#1

Holly mosses.

I can’t believe I’m saying this but on May 11, 2000 almost 20 years next year; 2020. I had just walked from the bus stop to my house at that time(a good jog). Had sat down doing my homework and that’s where this journey started. Through all the physical therapy and homeschooling. Then walking into public school just two short years, after slaying this ugly beast. I just remember thinking that at that time the physical therapist “was mean, pushing me beyond my mental capabilities”. I know you can say what you want about this but, it’s something, to see the reach I’ve accomplished and will push my story beyond these pages. I know what this encounter did to my once h3ll raising youngon in myself and didn’t stop that adventurous streak. When this world kept saying settle, I kept pushing that envelope and in that aspect have reached beyond my means on accident or purposely. It’s nuts I reiterate, it’s astonishing. What this journey has shown that even at my darkest, that I believed, you can be someone else’s light. Like Shinedown says in What a shame. “What a shame, what a shame, that we’re not all the same.” But, know that if it hadn’t turned out that way, I wouldn’t have the buddies and friends, I have today. I’m gratful for those that stuck with me, the ones I had the opportunity to impact and, the one yet too come because if I’ve reached this fare, I can only imagine what the next thirty have in store.

Tex

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#2

Jerrod, reading your post gives me and I’m sure many others, the will to fight even harder as we continue our AVM journey’s. You fought the good fight for many, many years, and it seems like you were your best advocate in determining what you could and would do. My friend, you have the strength of a Lion. Keep on roaring!!

Sharon D…

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#3

Ms/Mrs. Dawkins: I’m greatful you figuratively scrolled onto my posts. I’ve tough about but glad I chose this path. I know I don’t announce my struggles like others, I just know how I/‘ve felt at those times. It’s not a place I’m proud of but reading others messages know that this is not just my struggles but many others. Being a Leo, helped obviously Roar. :smiley_cat:

#4

@Sharon_A_Dawkins, here’s where my story on avmsurvivors.org started. I don’t know if you saw this post but here it is again. I had just graduated high school, wondering what to do with my life. After sometime on here shooting posts here and there. Mrs.Haley and I become acquainted on here about what had just happened to her at this time boyfriend. She was still hopeful of his complete recovery. “He is still the person I feel in love with and no one seems to understand…” Some time goes on. They by this time are engaged, and this is when niki is fronted with her desion to stick it out or leave the man she had just spent a third of her life with, because he had became volatile toward her. Niki where ever you are, however remorse you feel for joe; you aren’t responsible for it. I just recall niki asking me “Jerrod, What could I’ve done, did I do something to enrage joe, could I’ve been a better spouse.” No niki you did everything in your power to love joe and that’s all anyone could ask for”. I hope you are well niki from our lengthy conversations in 2011. God be with you.

#5

Hi Tex,

I hear you. A little over 2 decades for me, too. AVM rupture in April 1998. Just keep moving forward!

Adam

#6

I hear you @Red-Blooded_Stud, just can’t believe it’s been a decade since that one moment that I had changed this lady’s life forever. And even tile today I still tell the stories of the conversations niki and I, consoled in one another. Through the hundreds of emails. Yours Truly, Tex

#7

Tex,

You wrote: “just can’t believe it’s been a decade since that one moment that I had changed this lady’s life forever. And even tile today I still tell the stories of the conversations niki and I, consoled in one another. Through the hundreds of emails.”

An AVM will have an impact on a relationship. I had my AVM bleed much later in life than you had yours. I was 38 at the time. I was already past my “formative years.” But I was unmarried and didn’t have a girlfriend.

I don’t know your story well enough to be able to share more meaningfully. But I related to the idea that you wanted to be take regular classes in school as opposed to special ed. classes. You wanted to get back to where you were.

I had that feeling for many years - to get back on track and pick up my life from before the brain injury. But over the years I cam to realize that, while I was still the same person on the inside, there were likely always be some residual physical and cognitive limitations. I have an invisible or hidden disability. Little by little I decided that I would have to redefine my understanding of “normal.”

After my surgery I was in full time out-patient rehabilitation. I met a girl in rehab. I remember thinking at the time “who would love a broken man?” except another person who had been through a life-changing medical event. That was was a thought based in fear. The relationship was pretty short. It took me years until I was able to find a permanent partner.

It seems to me that Niki stuck with you for quite a while, but ultimately she met someone else. Have I got that right? Or maybe Niki is a pen-pal from AVM survivors.org. I can’t tell.

What’s important IMO is that you not compare the “old you” and the “new you.” After a while that kind of thinking makes it harder to move forward. It looks like Niki is still a good friend to you. And that’s very special. For me, the focus has been on moving forward, not forgetting the past, but not dwelling on it either.

Adam

#8

Just a young lady I contacted on here @Red-Blooded_Stud, on here she was frantic, and over seas “niki” is what she went by. Just lending my experience to her.

#9

I’m sure it felt good to give back.

#10

Anytime I can @Red-Blooded_Stud

#11

I found the twenty emails between me and nicoletteh from her first email. “Hi, Wow, Thank you for reaching out. Your the first person, besides a few people, to tell me that “he is still the person I fell in love with.” “no one seems to understand.”” I would love to chat.”” My boyfriend is doing good!””Still a long recovery but he is getting there. We live four hours apart and I haven’t seen him in 3 months.”” He’s embarrassed and doesn’t want me to see him like that. I am hoping to see him this weekend though.””I’d love to hear your story. Anything helps.”, Nicci saying “We have experienced a lot of things