This is the post I swore I'd never write. My dirty little secret, never meant to be told because writing THIS would require talking about it and actually, quite possibly feeling it and I've spent the last three plus years avoiding exactly that.
Denial may not be a healthy way of living but sometimes facing a devastating reality is far more overwhelming, requiring way more energy, and frankly I don't know that I'm capable of going there. But here I am... typing. Perhaps hoping screaming the truth, admitting my secret nightmare might somehow be cathartic? theraputic? or maybe even... healthy? Which, my god, the irony.
My name is Megan and I have an inoperable brain aneurysm.
I've seen multiple doctors; plenty of neurologists - some of the best in the world and they have nothing to offer me but a sobering diagnosis of an aneursym that's inoperable (due to both its location - on my carotid artery in my brain, deep in the Circle of Willis - and because of its shape) devastating me with the fact that if the aneurysm does burst, I have pretty much no chance of survival, quickly followed by their chipper advice to "just live your life!"
The very, very angry part of me wants to scream at them, ask them if they had an inoperable aneurysm, if their wife or child or mother had an inoperable aneurysm, would they be so "it is what it is" about it or would they remove their narcissitic doctor's coat for just a fucking second and realize I'm a young mother of three little boys who can no longer savor each Christmas morning because I'm lucky to have it but instead, quietly falls apart wondering if it's the last Christmas I get with my boys... Never mind making it to an age where I might see grandchildren. Maybe, if they were me, they'd understand that every little headache or head pain or vision problem makes me wonder if this is IT.
I am a ticking time bomb. And I haven't made peace with that yet.
How does someone make peace with that?
*
August 26, 2006 is the day my life was turned upside down. Just two months after Big T was born, my mom and I took all three boys to the L.A. Zoo. On the drive home, I got the worst headache of my life and my vision started blurring. I had to pull-over and stop because I couldn't see. I ended up in the ER that night with a CT scan that showed nothing and was sent home, head still pounding, afraid to go to sleep fearing I wouldn't wake up.
I followed up with a neurologist the next day. MRIs/MRAs, ECGs, bloodwork were all ordered stat. Nothing. I was told by Dr. Dickhead Neurologist that it was "probably hormonal" since I had just had a baby and he loaded me up with anti-seizure and anti-anxiety meds because he said that me being scared "wasn't helping."
Two weeks and the headache had not stopped. More, higher-density scans were ordered - some with contrast and some without - and still, Dr. Dickhead Neurologist simply continued to up my meds with no diagnosis. I felt like I was going crazy. I was, in fact, going crazy.
On a follow-up appointment, Dr. Dickhead Neurologist asked me to pick up my films from the imaging place and bring them with me. So I did. But not before opening the huge manilla envelope with dozens of images of my brain only to find the radiologist's report.
Small aneurysm on the carotid artery
It was my middle child's 2nd birthday, the weather was overcast and foggy and I sat in my car in the parking lot of the imaging center and cried hysterically. Dr. Dickhead Neurologist hadn't told me about the aneurysm. "Because it's very small and not of concern right now," he explained. "Who knows at what rate it might grow. And besides, I've never had a patient die of aneurysm that size within the first 5 years."
Comforting.
As it turns out, the aneursym is what doctors like to cast aside as an "incidental finding" and not the cause of my headaches and vision problems. I'd take anything back to not know about it. If there were ever a situation where ignorance is truly bliss, this is it.
The neurologists want me to have my brain scanned every year to monitor the growth of the aneurysm. I have refused. Why? It's inoperable. I could not handle knowing it has grown and especially by how much when there is absolutely nothing they can do about it.
*
I feel robbed. I remember only bits and pieces of Big T's first two years even though there are plenty of snapshots. I can't remember his first Christmas even though I was there and he would have been at least six months old already. And I can't get that time back. I walked through a fog so thick I couldn't see my hand in front of my face and while there were some days where I managed to fake normalcy on the outside, most days I couldn't leave my bed. I was depressed because I was afraid of dying and yet there were days when I just wanted to die.
I wish I could be one of those strong people who take this adversity and finds the good in it - like how it's taught me to live each moment and not take anything for granted. But the truth is, I've lost the last three years of my life to depression and what-if's and wallowing, if you will, in the inevitable. Because for me, it's not as simple as just continuing to live my life. As much as I'd like to keep going about life as though it weren't fleeting, the truth is, it is. The doctors tell me it is.
Instead, I'm angry, I'm sad and I'm devastated. Still. Selfishly, I don't want to leave my children. I want to see them grow up, I want to be here for them through all the stages of their lives, I want to be a grandparent to their children and I don't want them to be marred by the loss of a parent. And I'm scared, so scared, of dying in front of them.
Please god, yes you, the one I don't believe in, the one who cannot exist and let things like THIS happen, please don't let me die in front of them.
Every day is a struggle. A struggle to not think about it. To not dwell on it. To rationalize whatever positive aspect of it I can. It's hard. Some days, I can fake it. Some days, I can't. It's exhausting.
To my family - I know you've been going through it with me too and I'm sorry.
To my friends (most of who didn't even know... until now) - I'm sorry. But it's hard for me to talk about. It's taken me three years to get to this point.
To the internet - I am closing the comments because I don't want pity or sympathy and definitely no horror stories. It is hard enough to write this and click "publish." But thank you for listening.
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