A lot of fear comes about with the diagnosis of an AVM and how people choose to deal with those fears are all so different. What do you fear (I think most of us have the same biggest fear) and how do you deal with it?
I fear the pain I would leave behind if things didn’t turn out ok. I deal with this by making sure everyone knows how much I love them and to spend extra time doing the little things that I always took for granted. This is especially important when it comes to my boys. Making cookies, coloring, playing bord games anything just to make them know how special they are to me.
Fear… Yes, I have gone through various levels of fear over the years since I was originally diagnosed back in 2001. Since I had almost 4 years of time pass between the initial diagnoisis and the time that I had my craniotomy, I had PLENTY of time to be afraid. Oddly enough, the most fear that I have ever felt regarding my AVM did not take place prior to my angiograms or in the days immediately before my surgery, it took place at my wedding. I was reading the vows that I had written to my wife, Erin, and they were quite bittersweet. Our wedding, which had been planned several months earlier, took place about 5 weeks before my surgery, which was planned just weeks before our wedding. So as I was reading my vows and promising that I would be with her forever, I knew that there was a real possibility that I would not be alive for much more than a month.
Fortunately, that was almost 5 years ago and I am doing well.
I have so many fears…leaving my 5 yr old son at any given time the other love of my life my husband of 6 yrs. And of course the rest of my family. i also have fears that i’m going to have a bleed while i’m home alone and no one will know till whenever my husband gets home or the school calls a relative b/c i didn’t get him off the bus. By then it could be way to late. Of what if i suddenly have a grand mal seizure. So many things go through my head every day and i lay awake at night watching my hubby sleep so i can remember everything about him. I let my son get away with things in case i won’t be here tomorrow. I don’t really deal with them. I just push to the back burner and hope it passes. Sorry this wasn’t much help but i would love to know how you deal with your fears. Thanks Andrea
Great question. Mine’s obliterated now, but for 2 years of waiting for gamma knife, I was afraid to go to sleep and never wake up. Anyone who’s had gk knows what I’m talking about. Trying to live your life knowing hearing this constant tick-tock-tick-tock of a time bomb that could go off any second.
It was a difficult time and to anyone who’s there now, I would say it is normal to feel this way. Do what your doctor says, play it safe, stay near a hospital while the gk does it’s thing.
AVM is gone now, those anxieties are still painful memories, but the upside…yes, there’s always an upside, is that I appreciate life like never before.
Jamie I have a inoperatalbe AVM. I had Cyberknife which after 2and a half years there was not much shrinkage. This Novenber I got good news it had shrunk the big feeder is gone and only 2 small ones are left. My fear is that even if the others go away too…my seizures will neaver be gone and can the small feeders become big ones also.
I think most people have fears, especially if/when they confront a potential life altering or ending medical situation. Our AVMs just smack us up side the head of “Hey, this might be it, anytime soon!” But if you think about it, no one, AVM or not, has a lock on immortality. Few of us knows when the end is tomorrow.
One of my favorite posters was in a Chicken Soup of the Soul whatever book. It said “If you only had 10 minutes to live, who would you call, what would you say… And what are you waiting for!”
It’s easy to say and harder to do, but each of us needs to live our lives the best we can each and every day.
Thank you all for sharing. I grew up always thinking I had a shorter shelf life than most so my fear has never been what would happen to me, but what would happen after me. I know that anything can happen at anytime, but with the AVM it seems that the stack of cards piled against me has grown into a moutain. My father died when I was very young (probably why I thought my life would end at a young age) and I know the pain of missing someone who should’ve been there and fear my children will share the same fate. The only way I have learned to cope with this fear is to let them know how much I love them and how they have been my heart’s desire.