Can I talk about something very personal to me for a moment? Because it’s Heart Awareness Month (I think?), and my health has been on a mind a lot lately. Heart disease has always been a very big thing for me, even though I don’t like discussing it.
Talking about it just feels important, because I’ve been feeling pretty rundown lately. I’ve an appointment soon and I certainly hope that nothing is amiss. It would be nice to walk out with another as-clean-as-possible bill of health~ It’s really long though, so I don’t blame anyone for not reading. All the same, my story is here. Perhaps more about me than you’ve ever wanted to know.
I was diagnosed with Cardiomegaly at the age of nine, after years and years of our (then) doctor telling my mom that it was just growth pains. Nothing sobers a child quite like having adults discuss when you’re going to die, as if you have no idea what they’re talking about.
“Oh, well, she could live until she’s fifteen, or twenty. She may do okay until she reaches 30. We just don’t know.”
Suddenly, you’re not a little kid anymore. You look at everything a little bit differently. It doesn’t affect you quite like it would, say, an adult. An adult receiving this news it would have been the most devastating thing. You still have school, you still have friends, and summer break is sure to be as amazing as ever.
Just, now, you have to visit the doctor a lot because you’re sick.
You get sad a lot, because your parents are sad. Mom cries when she thinks she’s alone. Dad is quiet. They blame themselves.
That’s when you learn to smile for them, lie when you’re scared or hurting. You learn that others happiness count for more than your own, because you need those people to make your life less miserable. You need a smile that holds the hope that you’ll be okay. You need a reason to keep going.
Then, as you start to get older, the news that your heart is getting worse flips a switch. All the medication just seems to be prolonging the inevitable. Those reasons to keep going, that you so desperately needed as child, aren’t enough, and you want to stop waking up. Now you have mental disorders to go along with a failing heart, which is only at 20% rate.
I was suicidal and self-destructive from the age of 11 to 19. I made so many attempts, all of which I chickened out of. For which I’m grateful, of course. Every day, every forced smile, I remember wondering why life was so important. I was going to die, probably painfully, so why bother waiting?
I never talked about it, it made me angry. I hated everyone because they could do all the things I wanted to do. They could run, play sports, while I had to be excused from gym. I came close to passing out if I walked for too long. Everyone got to have the normal life I never would. I was the little girl that hid behind the bushes and cried, playing with her stuffed animals while the others played Red Rover. I was the teenager that never spoke, that was absent a lot. Sick all the time. The one that everyone assumed was the teachers pet and made fun of. There were times that others would call me a frigid bitch, because I never spoke. My health effected my weight, and for that I was bullied for being anorexic.
The week before Halloween, at the age of sixteen, I was rushed into the hospital for a blood clot. One had set-up inside my heart, inside the left ventricle. I came close to dying that week, and had they not searched for it on a whim, I would have.
I was there for a week, and spent my Halloween in a room very close to the children’s psychiatric ward.
But I recovered, and more medication was added to the regiment. On top of that, now I had to go several times a month for blood work. As a person afraid of needles, who avoided any unnecessary vaccinations, it was hard. Life got a little more stressful, and a little more painful.
I bled more, bruised easier. I had to be careful not to get cut. I wasn’t allowed to eat green vegetables, which sucked because I was an avid pickle and cabbage consumer. Less sodium, no caffeine, and no alcohol in the future.
It wasn’t long after all of this that I had to have a suspected tumorous ovary removed, and for the sake of my health, my tubes tied. A fairly big deal to me at the time.
I worried a lot. Thoughts about dying scared me even more, always at the forefront of my mind. I obsessed over it, and I suffered a breakdown. I cried myself to sleep every night, because I didn’t want to die. I wanted some semblance of control over my life. Including my death.
High school was a problem for me, too much walking. Too much stress. I was home schooled for two and half of those four years. I tried to go back, to attend my senior classes, and ultimately wound up back on home school.
My education suffered because of it, and my struggles to overcome my difficulties with math were left to fester. I never got the chance to take my ACT and SAT. Something that still bothers me.
I was too weak to attend college, as desperately as I craved it. I had all these hopes of attending CCAD, now discarded dreams. I was recently reminded of it, attending OhayoCon in Columbus, and I won’t lie…it broke my heart a little.
From the age of 20 to 22, my health had taken a dramatic decline. My heart-rate was as 15%, steadily getting lower. I could barely stand for more than a few minutes. Grocery shopping was a hassle. I went on trips with friends, only to end up crying and apologising for my health, for being unable to be as active as them. I blacked out a lot.
After one grocery trip, and months of my doctor’s urging me to get a pacemaker, I finally caved. It was a hard decision, but they weren’t looking for me to live too long without it. I didn’t want that. I wanted more years with my girlfriend, our cats, and my family. It weighed heavily on my mind, in that “oh shit I could be healthier” or “oh shit I’m dying” kind of way. Not the most eloquent phrasing to be sure, but you get my point. It was a life altering decision.
I remember a few days before I was scheduled for surgery, hanging out with Karu and my friend Sam. We had been goofing off, when all the feelings I had been bottling over the month of waiting came out. I don’t cry in front of people often, because what I feel isn’t as important as being strong for everyone else, remember? Well, yeah. I broke down, and I cried. I cried so hard that my face hurt, but they were there. They were what I needed, they were all the reassurance I needed. After that we all packed up and headed for Waffle House, where I had the best chili of my life.
The day of the surgery was…awful. There was such a heavy weight on everyone’s shoulders, and I’ll admit I got a bit snappy. My mom has a habit of being too serious, and my coping method is to make light of everything. I have to joke and laugh, which didn’t sit well with her. We apologised, of course, but still.
My older sister sent me a text about the traffic light resembling dicks. I laughed so hard that I cried. Humour.
Before they took me back, I told my mom that I wanted the biggest bowl of chili waiting for me. Maybe some tacos. I was going to be hungry, I just knew it.
The nurses talked about Scrubs, apologised for the room being so cold and gave me extra blankets. I succumbed to the anesthesia while singing the Scrubs theme, teeth chattering.
I’ll be completely honest, I don’t remember much after waking up, just that I was in an ungodly amount of pain. I remember crying, happy to be alive, and thanking my doctors. Apparently, in and out of consciousness, I laughed hysterically. No idea why, but my little sister gets a kick out of telling me about it. Also, as predicted, once the grogginess left me, I was starving. That chili was gone.
Laying hurt, sitting hurt, standing was unbearable. I couldn’t move my left arm, forbidden. It was kept in a sling, but that didn’t prevent it from shifting and making me almost throw-up due to pain.
The first couple weeks after getting home, I don’t remember. I was mostly drugged up. One of my cats stole a fancy cake from my unmovable arm, and I cried and spat curses at her. She left it half eaten on the floor, much to my rage. I got trapped in a new shirt, and cried. Karu almost had to come home from work to help me, thankfully my mom came over. She laughed at me for getting myself into such a mess in the first place, said I should have known better. I argued that I got in just fine.
After that first month I got a tattoo, the emblem from Assassin’s Creed, as a symbol of strength. That I’d overcome so much pain. It was also the fandom that helped me the most during that time.
Once fully recovered, I realised that I could walk longer, even run. So I did. Grocery shopping was only a chore because of my fear of crowds, but I could do it. I didn’t feel like passing out. I wanted to move, to do everything.
Just last year I was taken off my blood thinning medication. The dosage for many of my medications have been reduced, which is probably more than I could ever hope for.
I became indestructible. Strong.
I’m not, of course, I’m very much human. I have to be careful not to fall, or I might known wires loose. It scares me, a bit, to know that the machine attached to my heart, the defibrillator, might go off. Personally, I’m not ready for that level of pain. I’ll deal with it, should it happen, but I’d rather it not.
I’m alive and that’s all that matters. I’m not okay. I’ll never really be okay, but I’m better than I’ve ever been. Better than I’ll ever be. I still think about death, that I’ll probably, one day, die from this. Just like various family members.
But I’m here, laughing and crying, something I hope I continue to do. And making a difference in some lives. Maybe I can make a difference in a few more, through this or my art. Maybe I’ll give one person hope. Or maybe no one will read it. Who knows!
>n>; Sorry for the length. It, uh, got away from me, I think. It’s only after you’ve put you life into words that you realise how long it is.
OkayI’mgoingnowsorryforwastingtime. <3
