2015-05-16

The Deeps

I don't know how to write this post.  How can I focus my jelly brain enough to try and write something meaningful here? I don't know enough about this, even though I live with it almost all the time now. I want to help others who might have their bodies turn homicidal and force them to try a lot of intense medical intervention (DRUGS!) that might change the very way they think; but I'm not sure how.  If I'm honest I don't really want to write this because it feels embarrassing, it's not who I am, and I want to move on with my life.  Unfortunately I still have to deal with this, and even though I have a (temporary?) respite from it at the moment, other people might not and might need something like I did to help them say, "Hey wait... that sounds a lot like me!"

What am I talking about? Well my doctors call it depression so that's what I have to use when I deal with them, and I guess most other people, but it's not what I feel.  I actually don't feel much at all. I have the physical pain, the discomfort, the daily struggles and all that but I don't FEEL like I used to.  There aren't any moments in a day where I think to myself, "I want to do [x]."  It just doesn't happen. This non-feeling has built itself up over the years, as if taking the rubble of what I was no longer physically able to do and used it towards building this vast plateau of nothing over the last 3 or 4 years.

I wasn't able to quite describe this until recently. Many years ago I would talk with a close friend of mine about this general feeling of melancholy we shared. Being artists we both mulled over the idea that maybe it comes with the territory. Recently though I've been afforded a lot of time to think about things, read theological studies, and analyze these thoughts in a deeper way than over a beer. There have been moments , like flashes from a lightning bug, that would rattle me a little bit. Like when a  friend of mine, a physician, he agreed with my doctors telling me he's known I was dealing with "a bit of depression" ever since he knew me in college. I went to psychologists because I was told to and I felt so terribly misunderstood that them telling me I was depressed meant less than a foreign language to me. No, I told myself they were wrong, and while one was cute, generally not worth my time ^_^ (2)

But for some reason blog posts like Ally Brosh's kept popping up and I kept seeing Ted talks my friends would post.  Why did parts of me feel a little like what they were talking about? Why did some of those explanations make sense.  Not feeling anything...yea I can understand that. Dat fatigue; I can fall asleep anytime of the day. No I don't think terrible thoughts about myself but...wait actually I DO but they're... I mean they're not so negative they're just facts. I mean, I am in a pretty objectively worthless state. A drain on my family and friends. I don't really have much if anything to offer anyone what with my physical abilities limited and my mental faculties clogged up and congealed. I spend all of my days just trying to bandage myself up and survive all of this. I didn't FEEL like those were negative thoughts, I just saw them as the way things were.  But...I didn't feel much of anything so... is it the same as the people whose stories I learned? (3)

I think the turning point in helping me figure out how to describe this was when I was on Linezolid. It's this effective antibiotic but it's also got some nasty side effects. For me, one of those was a terrible worsening of feelings (that once again my doctor said he'd never heard anyone react that way). I remember being so tired, and I attributed it to the increase in diarrhea. I remember not being hungry, and I attributed it to not getting enough calories (because yes, when you struggle with calorie intake for long enough, not having enough energy to eat is a thing). Then I remember thinking often about the most painless ways I could make myself die with the various drugs I had at arms length.  That was starling. Even as I type it I know it sounds too dramatic. I can't stress enough that it wasn't. It was as normal as telling myself it was time to do my medicine again or eat or shower.  I didn't feel anything behind the thoughts, they just happened. And that's when things kind of clicked.

It came down to a quote often attributed to C. S. Lewis, "I do not have a spirit. I AM a spirit, I HAVE a body."  These 14 little words, I feel, have made all the difference in helping me to define what it is I've been going through.  It is my body that doesn't have access to motivation.  It is my body that has lost it's reward system.  It is my body that, once again, has decided to make life a little more difficult that need be by running these "facts" through my head all the time.  It is my body that seems hellbent on putting me in a box.

Think of it like this.  It's as if there is a light and a darkness. Spirit and body. Who God made me, and the lust, anger, pride, selfishness, and sin of my body. If I look back through my life it becomes clear that this darkness was always there as I felt it important enough to talk about sometimes, but it was a minor player. The moments of darkness were vagaries  that would play peekaboo and barf themselves out with a couple guitar riffs before disappearing again.

So when I would start thinking about the that good ole endless sleep I knew it was my brain chemicals being idiots again and I would think about The Hulk smashing trees or something. Or food.  Or I would just get up and watch Netflix.  If my brain is being stupid give it something else to do. And no I didn't feel guilty for not doing something productive.  At this point getting out of bed WAS productive.  If my brain didn't want to do anything, and I felt like finishing a movie was an accomplishment I would finish that movie and say, "Good job!" because hey, at least a little bit of my reward system kicked in.

I don't want to say that it was this body/spirit quote that gave me this...ability(?) but I have to bring it up because without it I wouldn't have been able to make the connection and put words to it all. I think this has been my outlook on things for years and years without putting words to it. It's a result of my walk with God.  I have always looked at how things ought to be, and since our bodies die, the universe is headed towards entropy, relationships fail, sin exists, it was clear that this is how things were not meant to be. But deep inside there is a part of me that DOES exist as it was meant to; as God wanted it.

So if you're reading this and suffer from depression but don't feel this way maybe you can use these words to think this way and it might help. I can't find someone to credit with this but there's a quote floating around, "The longest distance in the world is from your head to your heart." This is a battle for me because the last few years the heart feels dead while the head is at least rocking in a corner trying to shout at it to kick into gear. As a Christian myself, I can understand how someone might feel incredibly distraught to have to deal with all of these feelings and be left wondering, "what did I do wrong?" or "I'm a bad Christian" or other some such nonsense.  Don't worry, you didn't and you're not. It's just a body thing.  Jars of clay brah.  I won't say you should stop trying to draw nearer to God and leave it at that because some of the only times I manage to muster up a strong emotion or two is when I'm reading The Bible.  There are moments where I feel like God looks right at me and says, "It's ok" and I just about crumble. (4)

My friend made an interesting connection about this subject and said I should post examples of my music and you can hear the mental/emotional changes.  They're not representative of the only styles of music I would make but I'll post examples of things that I feel are representative of the majority of my mental states.

Before cancer:

During Stem Cell Transplant:

Graft Vs. Host a.k.a. "butter scraped over too much bread.":

So tell me your story. What do you do that helps? Anyone else deal with these kinds of thoughts?



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1 - My good friend had a grandfather who was diagnosed with colon cancer and instead of traditional treatment modalities opted to treat himself with the Budwig Diet.  You can read up on how to prepare the main foodstuffs in her Diet Book and more on the theory behind it in this book.  I had a hard time finding anyone online that had any success with "soft cancers" like lymphoma or leukemia but there seemed to be more people that had success with the "hard cancers" like pancreatic, colon, breast, etc. More or less you cut out bad fats, and introduce tons of flax seed oil by making it water soluble; blending it with non-fat cottage cheese.

2 - There was ONE guy I saw up at the NIH who was a chaplain I think.  I don't remember how I met him but we setup an impromptu meeting in between my appointments. He was solid. Why? Because he didn't hand me printouts that talked about emotional release.  He didn't give me the same "change myself and understand where my feelings where coming from" impersonal answers.  He didn't teach me about Cognitive Behavioral Therapy.  He didn't do anything that normal doctors seem to do for people with depression.  Which is great, because I still don't think *I* have depression; my body does. He just listened to me and what I was trying to say.  He actually offered insight and understood things I was trying to express beyond just my words like some kind of probe. If he was wrong he used my telling him so to get a better understanding, not just come up with a new way to tell me I'm broken so here's how to fix it.

3 - On thoughts; I noticed these negative thoughts at the beginning.  I think I've always had pretty negative thoughts that I've used to try and be better than who I am. The whole "ought" mentality. I ought to be stronger. I ought to be smarter.  I ought to write better music. I ought to please everyone.  So this thing that I used to accept and use as motivation was now more of a source of apathy.  I tried to inturrupt those thoughts and substitute them with the good ole I Am Lovable And Capable (IALAC! was I the only one that learned that in grade school?) repetition but often that would just make me more tired, more angry, and more irritable...because it reinforced the negative thoughts to begin with.  So...I guess don't beat yourself up about it you respond to that modality too. Doctors will offer it as a way to help and maybe it helps some but I recommend this workbook that goes over why that is. I haven't finished it but it comes recommended by people I know.

4 - If you are a Christian reading through this highly recommend a few books that helped me understand a little more the concept of suffering, emotions, love and a whole slew of things I was forced to question during all this and how it could fit in God's plan.
  • C. S. Lewis: 
    • The Problem of Pain
    • The Weight of Glory
      • Bombshell quote from one sermon - "In speaking of this desire for our own far off country, which we find in ourselves even now, I feel a certain shyness. I am almost committing an indecency. I am trying to rip open the inconsolable secret in each one of you—the secret which hurts so much that you take your revenge on it by calling it names like Nostalgia and Romanticism and Adolescence; the secret also which pierces with such sweetness that when, in very intimate conversation, the mention of it becomes imminent, we grow awkward and affect to laugh at ourselves; the secret we cannot hide and cannot tell, though we desire to do both. We cannot tell it because it is a desire for something that has never actually appeared in our experience. We cannot hide it because our experience is constantly suggesting it, and we betray ourselves like lovers at the mention of a name. Our commonest expedient is to call it beauty and behave as if that had settled the matter. Wordsworth’s expedient was to identify it with certain moments in his own past. But all this is a cheat. If Wordsworth had gone back to those moments in the past, he would not have found the thing itself, but only the reminder of it; what he remembered would turn out to be itself a remembering. The books or the music in which we thought the beauty was located will betray us if we trust to them; it was not in them, it only came through them, and what came through them was longing. These things—the beauty, the memory of our own past—are good images of what we really desire; but if they are mistaken for the thing itself they turn into dumb idols, breaking the hearts of their worshipers. For they are not the thing itself; they are only the scent of a flower we have not found, the echo of a tune we have not heard, news from a country we have never yet visited."
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Good quotes:

"Who am I?
They often tell me
I stepped from my cell’s confinement
Calmly, cheerfully, firmly,
Like a squire from his country-house.
Who am I? They often tell me
I used to speak to my warders
Freely and friendly and clearly,
As though it were mine to command.
Who am I? They also tell me
I bore the days of misfortune
Equally, smilingly, proudly,
Like one accustomed to win.
Am I then really all that which other men tell of?
Or am I only what I myself know of myself?
Restless and longing and sick, like a bird in a cage,
Struggling for breath, as though hands were
compressing my throat,
Yearning for colors, for flowers, for the voices of birds,
Thirsting for words of kindness, for neighborliness,
Tossing in expectation of great events,
Powerlessly trembling for friends at an infinite distance,
Weary and empty at praying, at thinking, at making,
Faint, and ready to say farewell to it all?
Who am I? This or the other?
Am I one person today and tomorrow another?
Am I both at once? A hypocrite before others,
And before myself a contemptibly woebegone weakling?
Or is something within me still like a beaten army,
Fleeing in disorder from victory already achieved?
Who am I? They mock me, these lonely questions of mine.
Whoever I am, Thou knowest, 0 God, I am Thine!"
-Who Am I by Detrich Bonhoeffer

"He came to my desk with a quivering lip,
The lesson was done.
'Have you a new sheet for me, dear teacher?
I've spoiled this one.'
I took his sheet, all soiled and blotted,
And gave him a new one all unspotted,
And to his tired heart I cried.
'Do better now, my child.'
I went to the throne with a troubled heart,
The day was done.
'Have a new day for me, dear Master?
I've spoiled this one.'
He took my day, all soiled and blotted,
And gave a new one all unspotted.
And to my tired heart He cried,
'Do better now, my child.'"
-Anynymous

Good Music:
The Smiths - Asleep
Orbital - Halcyon On And On
NIN - Every Day is Exactly the Same
Edited by Henry

4 comments:

kathyny said...

No matter what moment you are in Jhaysonn you are truly an artist and sharing, and that is a gift:)

no one said...

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Anonymous said...

Nice to get a peek into your head and life. Keep writing. And I have a testimony of someone else who overcame the impossible, and I'm gonna share it with you on fb in a private message. I got a gut feeling that I'm supposed to share it with you.

Anonymous said...

I meant to comment on this post. Not the previous one. Oopsie daisy.

-Kristin