My AVM changed my prospective on life, for the better

It’s ironic really. When I was first diagnosed with my AVM at 19 (February 27th, 2019), I felt extremely depressed. I kept asking myself, why me? What did I do to deserve this? Now almost 2 years after I was diagnosed, my life has changed, for the better. When I was a kid, and a teen, I always thought I was invincible, like nothing could touch me and I had no direction in life. I would cut class to hang out with friends, I would spend all my money from my job and wouldn’t help my parents with anything, but my habits changed over time. When I was laying in that hospital bed, being told I could have a Brain Bleed because of the AVM, changed how I approached life.

I’m grateful, to be alive. Everyday I wake up and try and be grateful that I’m here, although some days are better than others. They say you have 2 lives in life, but the other one starts when you realized you only have one to begin with. It was a wake up call and now (being 21, almost 22) I changed my ways. I’m a straight A student at a local university studying psychology. Hopefully I can get my bachelors in psychology and then go to med school so I could become a Psychiatrist. I have a well paying job and help my parents pay the bills, I’m responsible as well. I was on Corticosteroids for 6 months last year due to Brain Swelling and although it really took a toll on my body, I will bounce back from it. I always used to look at the worse in my AVM, but not anymore.

I don’t know where I would be if I never had that wake up call. It’s never too late to change your ways. At the end of the day we only have 1 live, and we should cherish it.

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Hi SFD, Reading your post was the best thing to happen to me in a while. (I just tested positive for covid.) You helped me to see the silver lining, glass half full… I don’t know you but I can say I’m proud of your positive attitude and courage. Just in terms of what you’ve shared, I bet you’d make a fine psychiatrist and many other occupations.
Whatever you’re doing keep on doing it. Thanks, Greg

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Thanks SFD, I think your perspective is amazing and will impact many of us. It did me. Great to hear on the marks and plan. I think it would be safe to say that with your outlook, you will excel at any job in helping people. Thanks Again, John

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It’s a total love hate relationship. I needed this to shake me up & open my eyes to the real world around me.

But, at the same time - I’m not gonna deny it, I still have a rolling feeling of “why did it have to be me” - at this point, since it’s now past tense. I just hope my son didn’t inherit this shit - it’s straight shit and I’m not going to sugar coat it.

My life turned on it’s side & I’m still looking for that balance - which, apparently isn’t that easy to do.

I have been mostly house-ridden for almost a week after being symptom free for over three months. I don’t feel horrible - but, I don’t feel like my usual self - so, I get the whole blessing in disguise - I get it. . . But, when I can’t work, my bills don’t stop - and, I’m a physical & emotional wreck due to experiencing side effects of who knows what this time - I just hope they pass before I wind up back in the neurological icu

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Hey @SFD ! Just wanted to let you know, that is so true! You said " I always thought I was invincible, like nothing could touch me and I had no direction in life." I hear ya on that! When I started this journey I was 18, hot shot, “hacker”, ready to make a big bank at whatever IT firm I chose. At 19 I was paralyzed, blind and couldn’t remember from one day to the next! You said “It’s never too late to change your ways.” I wholeheartedly concur! I remember reading in the Scriptures Job 13:15 “Though He slay me, I will hope in Him. Nevertheless I will argue my ways before Him.” I think that described my feeling to a t! I was ticked off, confused, scared, and worse than all that utterly alone in an injury I did not chose nor cause. But as I’ve walked a little farther (after rehab), and gotten a little grayer (from age), I’ve learned for me that the trials put in my life were not placed there as barriers but obstacles. Rather than sit there perplexed at how I’m going to overcome it, instead I kneel there and pray that the Lord will show me what He is wanting to teach me in the next obstacle of the journey.

So to wrap it all up, I say don’t! A mess is like that moment right after Christmas is all over. Wrapping paper is everywhere, toys and clothes, and electronics, and more and plugged in and beeping, and we know that in the mess and in the clutter life is lived for the purposes of seeing that smile on another’s face. Blessings as you continue; blessings as you go!

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Dear My Life Changed,

I read what you shared and I felt compelled to throw a few thoughts in response……

But before I do that, I want to clarify one thing. Often, when I am responding to someone else and it’s about their journey, I try to use a totally messed up totally false acronym. Why do I do that?

It’s not because I don’t want to link it to your post, far from it. I do that because if Merl and I are having a public conversation about something I don’t want someone else to feel like either they are being too nosy reading our conversation or something like that. If it’s that private, then it should be happening as a private message. If it’s out on the “boards” that, to me, means it’s an invitation for anyone else to chime in who wants to and is willing to do so with proper group etiquette.

So, with that being said, a couple of thoughts in reaction to what he wrote: (and thank you for the opportunity to share…….)
I think I shared the conversation that I had at the Cincinnati Children’s Hospital Ronald McDonald. I was sitting in the “living room” and chatting and I said to one of the volunteers, “I was just talking and I find it amazing how it doesn’t matter how sick your child is, almost everyone is friendly, smiling, talking and it’s not a negative area, that really surprises me.”
“Oh really, that’s easy, they are at least marginally upbeat for two reasons”:
With the exception of the families where there is no hope on this side of heaven, everyone else feels like they have a chance. A chance of a longer life with their child. A chance to bring them home. A chance to see a smile across the face of their child.
They get the sense, when they walk in the door, that they are among friends and friends who “get it.” Not everyone gets what it’s like dealing with someone in your family with a substantial medical “issue.”

As someone who, on Saturday will “celebrate” the 3rd anniversary of the surgery/treatment that knocked me out of the work world, out of most of the volunteer world where I used to be able to make a difference, out of the skills and strengths that it takes to do the vast majority of the stuff I wanted to be able to do - and normally have done. Do you notice that I use the term “celebrate” in quotes? Why?

Because I don’t know why God allowed this to happen. I’m not going to lie and say, “I’m glad this happened, God, thank you!”

Nope, I can’t say that.

But I can say that I trust Him and will wait until he shows where the next step forward and then take that step, even if I’m scared.

I’d be lying. It has been too hard, not only on me but on my significantly better half who is even more significantly better than she was already. (Shout out to her - in July it will be 36 years that we’ve been facing the future together and what a ride).

Okay, I’m rambling this morning but that’s the way my brain works a lot. My brother (older) is a minister, but he’s not your typical suit and tie pastor - he’s much more the jeans and flip flops type. He did a sermon series where he looked at certain current entertainment/sports figures and attempted to see what God had to say through these guys. The only ones that I remember for sure were Michael Jackson, Michael Jordan, Lance Armstrong and U-2. Don’t worry, I’m not going to write on each of them. I just wanted to talk a minute about U-2. Why in the world would a Christian Reformed preacher believe that U-2 has something worthwhile to say?

Listen, really listen to U-2, especially in the things they get mad about and how they get mad. Then ask yourself, what could you do more, what could I do more, what could the church do more of if they got mad in the right way?

I honestly don’t think that we will be able to say/see the reasons behind the things that happen like this until the other side of Heaven. It’s frankly too hard to deal with and too hard to attempt to answer. That doesn’t mean I haven’t struggled with God on that subject. I have. I still do. I’m sure I will again, maybe even before supper tonight. But that’s one of the things I’ve learned from God in all of this. He’s okay if we get mad at him. As long as we keep our minds and hearts open, we can be mad at him and then come back and listen to what he has to say and know that in some way and somehow, God is up to something. He is going to make our troubles and our mistakes and our problems into something that is or does good for someone - maybe us, maybe someone else so the best thing we can do is trust him and keep moving forward. And trust that he’s got “forward” lined up.

So, no, I don’t think I can say, “I’m glad it happened.” I do believe I can say that that I’m confident that someone, somehow, somewhere is going to find themselves closer to God because of what these three letters can do to you and me and the guy down the street.

And that is part of the reason I write.

TV

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I like what you say here very much! Of course. I think that an AVM bleed can be a wake up call,
and a life changer for the better. But we have to do the changing. Sounds to me like you accomplished
important changes. Congratulations. I changed also and I am glad that it all happened to me.
Thank you for posting this.

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