Taking Back Control or F*ck You I Won’t Do What You Tell Me

Remember that early post I made about giving up control and accepting help and all that? Well I take it all back. Giving up control of my own destiny has landed me in my current situation, which is less than optimal. As with anything, there is a balance that must be struck between giving in and taking charge. You can’t just float on letting other people make your decisions for you, even in the most extreme situations, because no matter what there are some things that other people don’t know. For instance, nobody else knows what is good for you all the time. You, as a purely subjective being, are the only person who knows what is truly good for you. Sure you may not know what chemo drug is best for your cancer, but know more than anybody how that drug affects you.

I’ve spoken at length about my control issues. I wouldn’t say that I’m a control freak, because I don’t feel the need to control every situation I’m in. In fact I’m very good at saying “fuck it, not my problem!” when I want to, but my issues arrive when I consciously decide to take charge of something. I get anxiety when things don’t go as planned after I’ve taken responsibility for them. Early on in my treatment I made the conscious choice to release all control over my situation and to ignorantly go along with everything that a medical provider told me to do.

“Yes, whatever you say, you’re the expert! You know what’s best for me and you are infallible”

Nothing could go wrong with that attitude, right? I went so far as to stay purposely uninformed about my condition and treatment because “what difference does it make if I know what’s going on, I trust these people to make my decisions for me because they know what is best for me!”

I forgot that there might be many other factors in play besides “what is best for me.” Like “what the insurance company says” and “making sure I’m not to blame” and “that’s somebody else’s department” etc. Also, nobody is perfect and right all the time. Case in point, I have to give myself a shot in the abdomen twice a day because of a blood clot in my arm that was caused by the hospital. You can’t trust anybody to get it right 100% of the time.

Now don’t get me wrong, I’m not blaming anybody for anything other than myself. I’m the one at fault here for giving up my free will and being willfully ignorant. I’m also not saying that I would have been able to avoid the blood clot had I exercised some control. No, shitty things happen sometimes and there’s nothing you can do about it. A careful and aware mind has the ability to avoid other shitty things though, just as the only way to get what you need is to consciously fight for it. This is taking control.

If I hadn’t spoken up for myself, I’d probably still be an inpatient right now. They wanted to keep me, but I was DONE with it. I had to negotiate my escape like a terrorist, or an important business deal. There were concessions and hard bargains, but eventually I talked my way out the door. Had I not advocated for myself and my needs, I’d still be stuck in that horrible bed eating that godawful food being woken up every 2 hours to have needles shoved into me while having several eyes on me at all times. A person can only live like that for so long, even if it is “for their own good.”

Something else happened to me, that was my fault, as a result of my lack of control. I’ve been going back and forth about sharing this publicly, but it would be intellectually dishonest of me to not talk about it on this blog, considering the other content. I’ve mentioned the minor panic attacks I had while in the hospital, well it turns out that were building up to something bigger. The reason I found myself back in the hospital after getting out the first time was because I had a pretty extreme delusional episode. In short, it was like a very bad trip where I was convinced I was dying for about 48 hours. My brain reverted to baseline survival mode and my consciousness took a backseat to an animalistic impulse behavior. Thankfully I was with my sister at the time and she was able to get me to the hospital.

So why did this happen? Well there are many theories. The official theory of the hospital is that there were “a variety of factors” that lead to the situation which is code for “I’m not taking blame for it, so you can’t sue me.” After reviewing all of the variables and examining the situation from the inside, I have a pretty good theory of what happened.. and it has everything to do with the MANY mind altering drugs that I was prescribed while in the hospital. I should have known better, but as somebody who gave up all control I would say “yes” whenever offered one of these drugs…because hey, they were prescribed to me, that means I should take them, right?

So I was intoxicated for a month straight, and then I was cut off cold turkey. Two days later I found myself in a state of delirium with extremely elevated liver numbers. Gee, I wonder what happened? Better put me through every single test the the hospital can offer in order to figure it out while I’m already thinking I’m dying. Ever get an abdominal sonogram, an EKG, a cat scan, an MRI, a spinal tap or have a neuro helmet taped to your head for 24 hours while you’re in an inconsolable state of fear that you’re dying? I literally thought I was being tortured, but it was for my own good, right? Then I was under 24 hours surveillance for the next 5 or so straight days while I was recovering, meaning I had somebody in my room at ALL times watching me. I understand the purpose of this, but to somebody who was already in a state of delusional paranoia, being constantly monitored, even while I “slept” (with the lights on for my babysitter), is NOT psychologically helpful. I was detoxing,  sleep deprived, in a state of paranoia, and was stripped of all privacy and freedom… gee, I wonder why I had a negative reaction?

Guess what all of those tests found? Absolutely nothing. Guess what the psychiatric exam discerned?  I’m completely mentally sound. Whats the general consensus of the huge multidisciplinary team of medical professionals of what happened to me? “We’re not sure, a variety of factors could have caused it,” aka “not our department’s fault.” Psychology has been calling it a reaction to stress, but I’ve been stressed before, I’ve been through trauma before and I’ve always managed to cope. What I’ve never been through before was a month of intoxication, as evidenced by my liver, and withdrawal. I’m not Doctor, but again those are the facts as I see them and I know myself better than anybody else. I’m not one to blame external factors for internal issues, but when those external factors are literally put inside of me and alter my psychology and chemistry, well I’m going to make a strong exception.

I’m not blaming anybody except myself. I should have known better. It’s one thing to manage symptoms, but at what expense? Now I don’t even take Tylenol. It sucks, but chemo is supposed to suck, right? I’ve been told this attitude is healthy.

It feels good to be back in charge and fuck you if you think you can tell me what to do.

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Jason the Cancer Troll

I am the benevolent Cancer Troll.

7 thoughts on “Taking Back Control or F*ck You I Won’t Do What You Tell Me”

  1. Sorry you had to go through additional fear-inducing and most likely painful procedures due to the withdrawal episode. Thank God your sister was there to get you back to where you could be helped. Hard to believe that you weren’t counseled on the “cold turkey” thing…but then again, I have been prescribed drugs for various ailments that I could not tolerate and have been told by drs. that don’t usually have patients who have this problem…well–each of us is an individual, we DO know ourselves best, even if we aren’t medical personnel, and doctors need to listen to us. Glad you are back in control. XXX

    1. well, I wasn’t supposed to go off the drugs.. but once I started showing some symptoms of steroid induced mania they stopped me on all narcotics.

      …and then everybody was surprised when two days later I went through withdrawal!

  2. Like I told you – *you’re* a huge part of the solution. You can’t just hand your fate over to the doctors… they’re glorified pharmacists about 80% of the time. *You* pitch in, do the research, do the work, figure out how to boost your own immune system and you’ll put this in the rear view mirror, with their *help*. Leave it all up to them lowers the odds, and apparently puts you into a paranoid, crazed withdrawal!

    Feel better, cuz!

  3. You are your own best advocate, but you can’t know it all. It’s okay to trust the professionals, but you’ll need to trust yourself too. Another lesson learned as you continue on your journey. Don’t waste any energy on being angry. You need all your energy to be positive. You’re back on track.

  4. Jason, I was worried something had happened! Thank you for sharing. I’m glad you took control and got yourself out of there!

  5. It took a lot of courage to share this. It is crazy all the fake silly shit they pump into your body for the sake of medicine. Get good sleep, a non-poopy pickin walk then sit and read. You are now on your road.

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