Brave Bullshit–or–Brave, bullshit!


The second time I was in the hospital last year, I had just suffered a repeated blood clot pulmonary embolism. I read in the news today, a man died from a pulmonary embolism because he sat too long with his legs crossed playing video games, got a blood clot, and it embolized. There’s a condition that is scarily and honestly called SUDDEN DEATH that is caused by a pulmonary embolism. If sudden death from a PE hits you, there’s really not much you can do about it. You just drop dead. That’s how it happens. so as bad as my health is right now, I’ve had three rounds of documented PEs and a few others we aren’t sure about, and I’ve survived them. No sudden death for me. I’ve beaten those odds. Even most of my doctors are surprised I’m still alive. The problem with that is, the PEs enlarged some heart valves, and caused pulmonary arterial hypertension and congestive heart failure–still better to be alive, right? Every time I read about someone dropping dead suddenly, completely unexpectedly, it’s pretty much a given they died from a PE or an embolism that caused a stroke, if there was no history of heart problems.

The fact it’s strange that I’m alive–even though I’m now on blood thinners and have an IVC filter to try to prevent any further problems from embolisms–it puts me in a strange place. I mean, I have perfect blood pressure, perfect cholesterol, perfect triglycerides, no arterial blockage in my body or heart at this point, but I have congestive heart failure. I’m only 42 years old. The doctors get confused sometimes on how to treat me. Congestive heart failure requires treatment with medication, usually a type of high blood pressure medication, but how do you give someone with good to low blood pressure medication that will lower it even more? They do it anyway, because keeping the heart from remodeling vessels and veins or something are important–but I have to be careful and take them early in the day when I’m up and around, or my BP drops too low and I get all dizzy. CHF is rarely if almost never caused the way I ended up getting it, so they are stumped. Leave it to me to make things hard.

I sat on the side of the bed in the hospital, hooked up to heart telemetry, which was wireless sending signals to the EMTs on the floor, and I couldn’t take it off–had to wear it to go pee, eat, breathe, sleep–didn’t matter, it was on me 24/7. They wouldn’t let me bathe, and let me tell you, after 6 days of sweating, shivering, shaking, blood tests, and more–well, you don’t just want a shower. You NEED a shower. Yanno? It was awful. So I sat there, after a near-fatal episode, with bruises all up and down my arms, with the heart telemetry on, having just been told I have multiple massive pulmonary embolisms, bilateral (both lungs), congestive heart failure, and pulmonary arterial hypertension–and I said to my best friend that after, when they had trouble taking blood from me for the umpteenth time: Gosh, I wonder what they would have to do if something really serious were to happen to me.

Which sounds sarcastic, doesn’t it? Truth is, I was deadly serious. Then I saw the tears welling up in Buffy’s eyes and she was trying so hard to be strong for me, and then she just burst out laughing and crying all at the same time. That’s when I lost it. I think we laughed so hard the EMT guys had to come in and see if I was okay. Something serious… ha!

I guess the point I’m trying to make here is–like I ever have a point–that since I’ve been ‘really’ sick, I’ve been told by people how brave I am, and how much courage I’ve shown. On that, I call BULLSHIT!

Being sick doesn’t make anyone brave. It’s something interesting too, because I’ve talked to others online who have health problems, and they all say the same thing about how they feel like frauds when someone tells them how brave they are to face their treatments and how strong they are for being sick.

We’re not strong for being sick folks. We’re strong, perhaps for living in spite of being sick, but there’s nothing brave about it.

I live every day of my life, in one way or another, scared shitless of dying. Yes, it’s true. Some nights, on a bad night, when my legs are aching, my heart is racing, my sats are low, I will purposely stay up all night, because I’m afraid to fall asleep, because I lose control in my sleep. No one dies while conscious, right? You have to have a period of unconsciousness before you die, so I figure, heck, stay awake, stay conscious, can’t die.

I’m not scared to live. I’m scared to die. I’m doing what I do, fighting, getting the treatments, doing the needle sticks, the nuclear tests, the medications, the diet changes, and all the other crap I hate so much, because I hate the idea of dying more.

As strange as this may sound, though, it’s not BEING dead that scares me. It’s the actual dying itself. Well, that, and I’m not sure I want anyone to see my computer or my closet after I’m dead–too many secrets and skeletons in both, yanno?

You know what I think brave is?

I think the EMT at the hospital who, when my telemetry was on and I got up to go to the bathroom and my heart rate rose, then my lead fell off, and he came running and leaping through the door of my room ready to save my life–that’s brave (even if I was only in the bathroom and was fine).

I think the nurses who take care of me and others like me in the hospital every day, with almost no thanks, lots of grumpy patients in their very worst nightmare situations, and who still manage to have a smile and do their jobs well–that’s brave.

My family, who have all stepped up to help me get the accommodations I need so I can live as normal of a life as possible, so I can go out and do things, still do some of the things I love at home, and who put up with the fact that I’m whiny, bitchy and demanding something, who take care of me when I can’t take care of myself and let me do for myself the things I can, while trying to have the wisdom to know when to do each, and still managing somehow to love me in the middle of all that–that’s brave.

My teenaged son who’s life wasn’t what it should have been for the last years in high school, but who tells me how much he loves me and how he wouldn’t trade me for any mama in the world, and thanks mom for the truck and the computer–well, okay, that’s not brave, but he is incredibly sweet.

To the specialists who saved my life, when many other doctors wouldn’t even take an appointment with me because i had no insurance, and these guys not only saw me, but gave me their pager and cell numbers and these big-wig specialists came to see me every day in the hospital, not knowing whether they would actually get paid or not–that’s brave.

But me? I’m not brave. I’m simply doing what I have to. I get up every day, because that’s what you do. I move forward every day, because that’s what you do. I keep pushing to stay alive, because the alternative is simply unacceptable to me at this point.

There’s no bravery in that. I don’t want to feel like a fraud. Am I strong? Sometimes. But sometimes, I cry and whine and kick and scream. My mother told me the other day, “I don’t know how you manage to stay so upbeat and positive with all you have to deal with.” Well, it’s like I told her, the only other alternative is to bring everyone else down and make them miserable too, and that doesn’t help anyone. I’m going to go through what I’m going through whether I’m miserable or happy, laughing or crying. It’s not strength that makes me choose to be positive and upbeat and happy as much as I can–it’s sheer necessity.

Why do you get out of bed every morning? My reasons are probably pretty similar to yours, it’s just the doing of it is a little bit harder for me, is all.

So don’t call me brave. Don’t call anyone who is sick brave. We didn’t choose this. Tell us we can do it, be strong enough to do whatever needs to be done. Tell us you have faith in us, and that’s fine. But don’t tell me I’m brave. I’m not brave. I’m scared shitless and simply doing what everyone tells me I have to do because I don’t like the only other choice life is currently giving me.

And yes, I’m mostly just rambling… because tomorrow, I’ll probably write a post about how very brave I am to be dealing with all this. That’s just how I roll.

Love and stuff,



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2 Responses to “Brave Bullshit–or–Brave, bullshit!”

  1. Farah says:

    Well, I protest, humph!… I still think there’s courage involved, because, in your case you keep a high morale no matter what. It’s hard for someone on the other end of the internet to imagine you sick with all that you do. You’re not living in this suicidal mode 24/7, giving up on yourself, which I would think is the opposite of courage. So.. yeah, I get where you’re coming from, but I can’t help but see you battle things, and put your awesomeness out into the universe, hence you’re brave.

  2. Derek Odom says:

    The answer here seems simple: always spread your legs when playing video games. DONE! I’ll bill you later.

    Seriously, though, bravery IS something to be proud of. Also, you know that old saying that goes something like ‘Everyone can’t be wrong’? If multitudes of people are telling you that you are brave, then dammit, you are brave. Quit fighting that.

    Look up how many people swallow the muzzle of a gun or jump in front of a train each year. Those people aren’t brave. You don’t cop out and you don’t run. That’s strong and that’s brave, and I don’t care what you say about it. 😀

    Hang in there, girl, some folks out here in ‘net land really love and care for you.

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