Making a Deal with the Devil

I was chatting with some friends the other day, and they of course had to say the chorus phrase that a lot of people say to all chronic pain/illness patients, "I don't know how you do it." I had decided a while ago, I wasn't just going to take that and say thank you and then be done with it. I wanted them to realize that I had no choice. So I of course said thank you, but you don't really understand how chronic illness works do you? They sort of looked at me funny, and said, "I must not." I said I like to compare it to making a deal with the devil. You say I don't like this, in fact I may hate you X illness and everything you're doing to me, but I don't really have a choice(assuming your illness is incurable and fluctuates like mine does) I'm stuck with you, so I will live with you, but just so we're clear, I will never like you. You must in order for your mind to gain peace.  You must for your own sanity.

I remember having "the talk" with my doctor. It was right before he left to go to Texas. He said you're moving too fast for technology, we just have to hope technology catches up and you don't get worse in the process. Talk about a punch in the gut. This was right after he told me he was moving to Texas. And I've said this in past posts, that even after the stroke and knowing that he did something he wasn't supposed to do, he was still so amazing to me. He was the reason I was still here. I remember when I first started having chronic malfunctions, he promised me he would figure it out, and just him saying that, made me feel better, and it made me admire him more. So when he told me A. that he was leaving, and B. that there was basically nothing left that any neurosurgeon could do for me, I was pretty stuck. That was when the thought came to me, "well I guess I need to make a deal with the devil." Truthfully I probably didn't even know what I was making a deal about, but as time went on it became clear to me, that in order to get anything done, I would have to. Because for the moment I was just making excuses, and I knew that if I ever wanted to do anything with the rest of my life, I would have to stop feeling sorry for myself, and accept that I was in pain forever. I know it sounds horrible and it was. But I knew that in order to get the mountain that was in front of me moved out of the way and making my biggest goal come true that was what I would have to do. So, I chose to not really tell anyone what I was doing, and just try and make that deal silently. No one would know about it, but me.

It worked for a while, because I just kept brain-washing myself into thinking this is what I have to do in order to graduate with my class, which was my biggest wish so whenever feelings of sadness or loss came up, I would just push them to the side, telling myself that my wish for that year was more important. I had quite a few hospital trips that senior year, but I was getting so used to going to the hospital that it actually turned into my safe place. It was the one place I wanted to go when I felt bad because I knew they would try help me even though my doctor said there was nothing surgically they could really do for me anymore. I think for a lot of chronic kids, even though they hate the hospital secretly there is a love for it. It's the one place they can be and have complete 100% trust in the people that are there, and hopefully they will end up walking out of that place in better shape than they did when they walked in. That was how I had to treat the hospital, because I was going so much.  I knew if I hated it, that I would have closed myself off to ever getting better, which was what I desperately wanted. After my doctor confirmed that I was just exquisitely sensitive to pressures and that the amount of surgeries that they had done in the amount of time they had done them had done more harm than good to my overall nervous system health, he told me that we needed to keep me out of the OR as much as humanly possible. Little did he know, that in the 10 years since he said that, I would have 8 more brain surgeries, as well as 4 more lab confirmed staph infections.

Having to live your life playing Russian Roulette with a drug cocktail is so beyond words not what I expected I can't even tell you. My entire adult life has been surrounded by decisions being made because of my illness, whether I was consciously aware of it or not. From where to work, to where to live, to what time I go out at night.  Every decision I make is walking that invisible line of a tightrope. It's flirting with both sides, worrying about and not wanting yourself to show too much of either side, and I mean I hope I'm doing a good job? We thankfully don't really have any mentors to look up to, unfortunately not because there aren't any, but because none of us talk about it. We either write like I'm doing, or just make ourselves known within the charity that sponsors research for our illness, but we do it silently. We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if’s" or "could have been's."   Every second of every day we are witnessing the ever-present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality, none of that matters at all. All that matters is how you view yourself. Yes, others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. So, what about you? Would you make a deal with the devil?  In order to survive?