This Is My Life

 I'm on vacation with my wonderful wife Laura and daughter Lois  in a beautiful condo right on the beach, over looking the Gulf. Every day has been gorgeous and there's so much interesting stuff to do. Aside from the beach itself there are a multitude of amazing seafood restaurants, some great shopping plazas, family to visit and my wife's friend Kim has even come from out of town for a few hours today, just to see Laura and enjoy the beach on her way home from her own vacation.

I wish I were having a good time.

When the trip was booked we assumed I'd be healed by now, half a year after the surgery. Instead, we had to debate the merits of me going versus me staying home. I'm here, and I'm glad I get to share this time with my family but the most exciting thing I can say about this trip is that the bed I spend most of my time in is super comfortable and if we had the extra money I'd say we need this at our house. That and I've read two books in two days. In bed. Alone.

I love that Lois, who is four, gets to spend time on the beach and play in the ocean. She gets to spend way more time with mommy than normal and see family she only sees once a year or so. I sincerely hope that some of this trip stays with her forever. I'm so very happy she's here.

I love that Laura, who has held this family together while I've recovered and who has gone through so much in such a little time, has this chance to unwind. She clearly loves the ocean and loves the time she's getting with our adorable daughter. It's awesome that once Lois goes to bed, Laura can sit back and play Skyrim, let the stress roll off her, and worry less about the world around her. And by happenstance she gets to see a friend she hasn't seen in a couple of years! This is so fantastic and needed for her.

Im excited and happy for them both. I look forward to tomorrow when I might be healthy enough to go out to lunch or maybe even dinner. I look forward to watching the two of them have the time of their lives.

I just wish I could join in on it.

At 3 AM I woke up suddenly and violently, shaking the bed with my movement and waking up Laura.

Laura: "Are you okay?!"

Me: "Yeah, why?"

Laura: "You woke up with a big jerk!"

Me: "Nah. You're pretty awesome."

I went back to sleep with a huge grin on my face.

Writing is how I process things that happen to me. Sharing them on Livejournal or any social media is sort of the same thing; I get feedback and see things in different ways. It's a good trade-off even though I often feel a bit attention-whorish. Okay, a lot. I like writing for an audience and getting responses. What can I say?

That being said, my posts here and on Facebook seem a little bleak lately. I feel low quite often, weak, broken, and a whole bunch of other things. Today I feel like gravity is extra-specially heavy just to keep me from standing up or picking up stuff. I feel extra weak.

But I'm okay.

I'm not great but I am definitely okay. I can feel myself getting better most days. Maybe today I'm feeling a bit heavy but I can think pretty clearly and focus on things without wanting to take a nap every hour. Maybe yesterday I was especially tired but I was strong enough to leave the house and enjoy all-you-can-eat sushi for lunch. Seems small but believe me, it was a victory. At the end of lunch my hands were shaking and my manual dexterity was so low that I couldn't use the chopsticks any more but I ate as much as I wanted and enjoyed myself. That's a victory.

I'm pushing myself a little bit every day. Today I think I'm going to go to Costco with Laura and get some groceries. I can't walk the whole thing (I can do about one aisle, I would guess, before needing to sit down) and will have to use one of the electric scooters like I did at the store the other day but I'll be out and about, getting some air and exposure to the outside world. It's one of the most boring adventures in the world but it's an adventure right now.

The back of my head was leaking quite a bit since I've been out of the hospital but today I've had one bandage on all day without needing to change it. This is actually hugely good news because if it continued it would have probably meant a third surgery and I cannot go through that right now, plain and simple. Just can't. I have a bit of a headache but it's not like before the first operation and it's definitely not like the headache I had when I had a cerebrospinal fluid headache. It's just a headache. This is a good thing.

One thing I can't do very well right now is focus on a narrative so this is probably skipping around a bit. I'd apologize for that but I'm guessing most of you don't care.

The tl;dr here: Things seem bleak but that's because I'm just writing about what's bothering me. I'm actually doing at least a little better one way or another every day. I think it's important for me to recognize that and not wallow in the bad stuff all the time.

I'm home from my second surgery this month and I'm probably better, done with hospitals, brain surgery, and lumbar taps. I'm healing. I'm getting better. I can see that.

And I'm a little bit broken. Not from the surgery or the stay at the hospital. Those were mostly fine, though I'd rather never repeat it. But I'm broken.

I have a false memory. I know it's false. It's even just a looping memory of something that probably happened for less than a minute.

I have found one of my levels of Hell and I'm broken just thinking about it. Right now. My eyes are watering up and I'm shaking. I have to look away, watch Chuggington with my daughter for a few minutes, breathe deeply and forget what I'm remembering just for a few minutes so that I can come back to it for a few more to write about it.

That's broken.

It was after the second surgery. I didn't wake up during it or anything like that; talk about hell. No, this happened afterward, in my room, when I woke up from it, and the pain.

That's all that existed. Pain. My eyes were closed. I was rolled into a ball, my arms against the sides of my head, The pain. The pain was worse than anything. Nobody was there. I could ask for help but nobody would answer. Nobody was there. I was alone and in pain so bad that if someone had hinted this would last forever and offered me a bullet to the head, I'd have taken it. In a heartbeat.

And I was alone. Nobody was helping me. Nobody was comforting me. Nobody was there trying to help. I was alone, calling out how horribly I hurt, crying for help and nobody was there. The part of my memory dealing with this moment tells me it lasted a minute, and that it lasted days, months, forever. It might be a 30 second loop on repeat for all I know. I don't know. I was alone and in pain. Nobody cared. Nobody knew.

But that's stupid because they were. Laura was there, telling nurse aides that the answer "no, he can't have any other pain medications because there's nothing on the chart" wasn't enough; making them getting doctors on the phone right now. Jenna, the best ICU nurse in existance was there finding ways to make the room more comfortable, darker, keeping people walking by as quiet as humanly possible, everything she could do. They were both right there the whole time, working hard to make me feel okay. They were both right there, with an army of people behind the scenes helping them.

I know this because both Laura and Jenna tell me this is what was going on.

I was not alone.

I've never been more alone.

I can't remember any of their help. I don't remember them being there. I try hard and can't; I break down trying. I try not to think of it and then something stupid will pop it back up in my head and I'll actually burst out into small, hopefully unnoticed, tears.

I'm getting better. I'm healing. I'll be alright. But I'm a little broken. Seeing one of your personal hells will do that to you.

I'm having brain surgery on October 7th at 9 AM.

That sentence was kind of a punch in the gut the first time I wrote it. Right up until that moment I was very nonchalant about the whole thing. "Yeah, it's brain surgery but it's easy brain surgery. No worries!" And really that's still true. As far as brain surgeries go the removal of my arachnoid cyst is really very simple.

It helps that the cyst pushes right up against the skull. They don't even have to see my gray matter, let alone touch it. They'll just remove a small chunk of my skull, opening up a window directy to the cyst, peel back the top layer of the cyst itself, and then pop it to allow all the fluid to drain away.

Things I never want to hear in connection with my brain ever again: "remove skull," "peel," and "pop it."

There are risks, just like with any surgery. The biggest risk is infection, the second biggest risk is that my brain will "fall" into the hole created by popping the cyst, which could do actual brain damage but the doctor doing this has done several of these in the past and doesn't seem worried.

I'll be under the knife for four hours or so, then in ICU for one or two days. After that I'll be in the hospital for another 2-3 days. Assuming nothing goes wrong I'll then come home. Assuming nothing goes wrong (and I am, as the doctor noted a "healthy guy" so there is no reason to assume otherwise) I'll be home in 3-5 days.

There will be some physical and cognitive healing to do. The physical healing will be just the back of my neck healing up and dealing with the pain. I am certain I will be sent home with some really good pain killers and I will use them as needed.* I'm not too worried about the physical side effects, honestly. I understand it will hurt and I'm ready for it.

Cognitive, though?

I have no idea what to expect on that side of things and since the brain is largely still a mystery my surgeon couldn't really tell me what to expect beyond dizziness and trouble with my balance. Will I be able to talk clearly? Will my sight be effected? Will I suddenly only want to skip everywhere and never walk again?

Okay, that last one I could deal with.

I don't know. It'll probably be the simple stuff the surgeon mentioned and nothing more. Hopefully. I guess we'll find out.

Forward into adventure.

*I know the risks of addiction and will be very careful.

It feels weird to be sick and to talk about it without being told I'm a hypochondriac. Oh, maybe sometimes a little problem is blown up in my mind into a bigger deal than it really is but for the most part every time I've stepped into a medical test to see if there really is something wrong with me I've been vindicated.

Extreme pain two years ago that had me knocking my head against the wall a year after feeling the exact same pain in the exact same way?

Turns out I had appendicitis and that my appendix showed that it had been in distress for a long time. Probably over a year. The pain I had felt a year before in the exact same place? Probably an appendix attack that only luckily calmed down enough to not explode and kill me when it was misdiagnosed.

Chronic stomach aches, nausea, problems with my stomach since I was a teenager? Well, the surgeon who removed my gall bladder last year had been doing this for over 20 years and had never seen so many stones, or stones that large in his whole time of doing surgeries, meaning that it had probably been a problem since, oh, I was a teenager and just never diagnosed.

Pain in the middle of my stomach, right above my bellybutton? A weird bulge above my navel that I'd had for years? Yup; hernia. An untreated hernia I'd had for years. Seriously. Then when that same place started hurting a few months later I dismissed it as all in my head. They were checking me for diverticulitis when they noticed a problem with it. Turns out it had reopened and they had to put some mesh in. And I had been trying to ignore the pain because it was all in my head.

Keeping all that in mind, why is it that now, when I have a confirmed case of diverticulitis and another flare up over this weekend that had me in bed almost all Sunday with the pain, I still feel like I'm making it all up?

Logically I know it's because my pain was dismissed for most of my life. I was told flat-out that I was making it up. I'd wake up sick every morning as a teen and as an adult later on and I was told that I was faking it or that it was stress, nothing physical, that I had to tough it out and learn to deal with it by my parents and later my ex.

But I should be able to fight that with logic, right? I know that I'm sick. That this is real. That I am absolutely not making this up in any way. I've had 3 flare ups since we moved out here, with this one being the worst. I have scans to prove it, doctors backing it up by telling me, straight-up "You have diverticulitis" and then showing me the proof on the tests they did, the pictures they've taken on multiple occasions. It is real.

Yet I doubt myself.

I feel like I shouldn't go to the surgeon that my doctor wants to send me to. I shouldn't bother him. It's probably just me blowing things out of proportion just like I always do. Except that I don't, according to every medical test I've taken in the past few years. But I do because I'm sure I do. Absolutely certain.

I'm having some other problems. Scarier than diverticulitis. I don't really want to talk about it because it's triggering issues to lots of friends of mine. It's possibly nothing. It's possibly something. My main doctor thinks that it's something I should at least look at but the specialist he sent me to told me it's all stress. All stress.

Of course it's all stress. Of course it's all in my head. Of course it is. Because I made it all up my entire life, right? Because that's what I genuinely believe even when I feel the pain or have the issues I'm having. It's all in my head and I'm just really good at making it all up so strongly that I believe it's real. He's a specialist so he must know what he's talking about.

Fuck.

This post was supposed to be something different but this is what came out.

I'm scared. I don't want surgery. I want it all to be in my head. I want to be making it up. I want to go talk to a therapist and straighten out my head, get it on straight so that I just stop making up all this bullshit pain and other stuff. That's, somehow, the easier route here. It's easier for me to believe even though I'm feeling the pain and experiencing the issues.

How fucked up is that?

EDIT:

Scared and angry. Not just scared. I'm angry that I've gone my life with these problems and not had them fixed until now. I'm angry that my body feels like it's betraying me. I'm angry that my brain is so messed up in this regard.

Blah.

And I'm tired of being scared and angry so I'm going to stop for now. I'm just going to stop thinking about it. Double blah.

One foot ahead of the other. That was how I moved.

The pack on my back weighed over one-hundred pounds, and I weighed easily three times that amount.

Twenty miles a day over the course of a ten to twelve hour day.

Left foot. Right foot. Left foot.

One step after another. One foot, then the next, moving bit-by-bit. Not measuring in miles, really, rather measuring in footsteps. One. One more. One after that. One. One more. One more again. Counting by ones, up to one, every time.

Pick a spot in the distance. That's where I would rest, once I got there. That's where I would sit down. Not until I get to there but once I got there I'd rest as much as I needed, until I was ready to move again.

Step. By. Step.

Resting, singing quietly to myself, in a world devoid of anyone or anything else. Cars went by but didn't draw my notice unless they honked or stopped to offer me a ride. Otherwise they simply didn't exist; they were outside of what mattered.

The steps mattered. Getting back up from a rest mattered. Getting to the next resting point mattered. Nothing else. When I was hungry, I ate. I stepped and I ate. Step, bite, chew. Step, bite, chew.

Bit. By. Bit.

I didn't want to die anymore but I didn't know how to live. Until I figured that out, I would walk. Maybe each step got me closer to figuring it out. Only one way to find out.

Step.

Step.

Step.

My arms are sore, but it's a good hurt.

My back hurts, but not like it did before.

My legs throb, and I like it.

I'm doing an exercise program where I start out doing very, very small things. Push ups against the wall, for example, or sitting in a chair lifting my legs straight up in front of me. As I get better at those very, very small things I "level up" to very small things. From very small things we go to small things, then medium things, then big things!

Big things, even medium things, may very easily be a couple years away. I've been out of shape for all of my adult life; undoing that lifetime of not doing the things to get me in better shape is going to take a while.

I know I've talked about fitness a lot before. I've made grand promises about how much I wanted to get done and all the change I saw coming in the future. Time and time again I've started out all "Rah, rah, rah!" Time and time again I've failed.

Here's the thing:

I've been doing these exercises for over two months now. This isn't the blush of a new love, we've been seeing each other for a couple months now and I'm still happy.

I can even see some changes happening in my arms and legs. Small changes, to be sure, but changes! More changes than I've seen in the past.

It feels good, even if it hurts a little.

I'm not who I used to be.

I'm not extremely different from who I used to be but at the same time I'm completely different.

You see, I killed myself.

I was supposed to die. That was the plan. I was supposed to leave for the west coast without any money in my pocket and with nothing more than what I could carry on my back, then I was supposed to disappear in the Washington mountains and wilderness in the middle of January, eventually found by a random passerby.

"Natural causes."

I had to make sure it was natural causes. Frozen to death; stupidity on my part. Not suicide. I couldn't do that to my friends. It'd be easier if I just died, not by my own hand but by my own intention.

Turns out I didn't actually die. Sorry if I spoiled the story for you.

Instead, I found myself meeting person after person who cared. Who helped me make it to the next stop in my journey. I moved forward and when I looked up at the sky at night I huddled deep into my (gifted) down sleeping bag to stay warm while the air was negative ten degrees. I struggled to stay alive. I realized I didn't want to die.

I had given away everything I owned. Moved away from everyone I knew. Got away from the source of the pain. I didn't want to die.

All I had to do was kill off everything I used to be.

I killed myself.

And I came to life.

It's nice to meet you again. I'm Jeremiah. The real me. Finally.

I don't write here much anymore. I have two other blogs I use much more, one of which is a personal blog, the other is for my life as a father, and one or two more than that that I use infrequently as well. I've drifted away from LiveJournal, as have so many others.

Still, for some reason this feels like it belongs here.

I'm improving myself. For the first time in a long time I've put things on my to do lists and actually followed through with them for more than just a few days.

I'm getting stronger. Slowly. I'm learning more ASL. Slowly. I'm learning how to play guitar and keyboard. Slowly. Ever so slowly.

And I think that's the key; moving slowly.

The exercises I'm doing are ridiculously low end. I laugh at myself forgetting tired doing them but I do get tired and I do them anyway. I'm doing wall-push-ups, door frame vertical pull-ups, simple leg raises, crunches, chair-seated knee raises. No weights except what my body brings into it and nothing that I can only do one or two of; I do 50 wall-push-ups, 60 of the vertical pull-ups, etc.

And it's working. It shouldn't be; the exercises are such that even the lowliest of wimps would laugh at me, but it is working. I can see definition where there never has been any. I can feel the exercises getting slightly easier as I near the next goal so that I can move to the next step (counter-top push-ups at an angle, for example) and it's amazing.

I'm doing the same thing with keyboard, learning the simplest of chords right now before I jump any further into it.

Guitar I've taken a different approach and I play Rocksmith for an hour or two every day but that's gamifying it which also works for me, just in a different way. Still, even there I'm moving slowly and putting it down the moment I get frustrated, then I'll come back to it later when it's fun again.

My old approach, "go big or go home?" That didn't ever work for me even a little bit. I'd give up quickly or just plain fail.

Now, it's slow and steady.

Let's see if I finish this race, let alone win it.