Thursday, August 15, 2013

Dark vs Light

Please play this music by Haley Fohr's Circuit des Yeux while reading this post.
You can buy her new record 'Overdue' @
I'm in love with this record. Buy it, you'll be happy you did.

Fear. Paralyzing fear. This is what I've been struggling with these last few months. It sneaked up on me slow like the kudzu that takes over a tree. I didn't realize it until I was so over-taken, that all I could do was lay on the bed, unmotivated and shivering deep inside.

I was sort of buzzing, but at the same time I felt lifeless. I had the computer on my chest for days as I laid in bed, the only movement was from using my mouse to scroll through Facebook to see how other people were living their lives; then clicking ‘Like’ here and there.

I don't want to be afraid - but I am. I’m very afraid. I got a relatively good PET scan on July 9th. Tiny bits of melanoma in my left calf but nothing to worry about too much. And I was thinking - 'I’m really beating this thing!'

But that’s when the black ball of fear started to grow in me. I had a MRI scheduled for August 6th; I'd been having slight headaches and walking to the right a little more that I want to. I'm a like a car with unbalanced wheels, always pulling to the right; hitting door jams and grazing the refrigerator as I walk by.

It was really interesting - as soon as I was told I had two brain tumors, I felt such relief from the fear. I see now that most of the fear stemmed from the unknown. Once I knew what was going to happen, and a plan was in place; the fear subsided quite a bit.

I’m going back into the mask on August 22nd with the laser pointed at the dreaded spots. I've had Radio-Surgery done before, so I'm not too worried about the outcome this time - but three months from now when I get a follow up MRI; I'll be in that black space again, because if anything shows up then I'll have to do whole brain radiation (WBR) and that scares me to death. No one knows the complete effects of WBR - it’s different for each person. My brain surgeon can't give me an answer on how much I'll be affected by it. Most people lose their short term memory; which I already have some issues with. It can make people more susceptible to stroke, and Neurocognitive function impairment. Decline can be expected four months after treatment. To what degree is unknown.

I can see the pinpoint of the black mass of fear slowly opening again. I have been thinking of death in abstract ways. Life is abstract. Existence is abstract. The meaning of life is elusive - some say the meaning of life is just the task of living.

Viktor Frankl concludes that the meaning of life is found in every moment of living; life never ceases to have meaning, even in suffering and death. People who have some reason to reach for, some hope to achieve something will live longer. When a person loses hope, he is doomed.

 It’s an amazing thing that no one in the world knows what happens when consciousness ceases to exist in a person. By all means it is the definition of death - but what then? Nothing? Something? Reincarnation? Do I exist in a parallel universe, and if so will that be enough for me? I suppose I wouldn't know because I could die in that universe too! All this thinking makes my tumors throb.

 I’m trying to put in order what I think and what I want to do once I'm gone. I am leaning towards a green funeral. You can find out what states have facilities for green funerals at the Green Burial Council. Lucky for me, there is a place in Raleigh where you can be buried without embalming fluid and without a grave-stone - just some trees and natural wilderness to grow around you. I want to be minus the coffin too! Just a burial shroud and it doesn't have to be a fancy one - just one that will biodegrade.

 I had my wonderful beast friend Rufus cremated when he passed six years ago. I would like him to be buried with me; his ashes laid out along my side. I think that would make him happy too! He’s been cramped up in a little white plastic box on our fireplace mantle far too long. Then we could play 'patty cake patty cake' together forever and ever. And maybe hook up with my first love, Slash. He was a black version of Rufus, and my first special furry friend. I was 13 when he died, it was tragic.

I had thought I was going to die early on in my diagnoses, and a few times since. So behind Dan’s back, I contacted local funeral homes. Yikes!!! I asked for a break down in prices. Coffin vs Cremation. I thought cremation would be cheaper - but you have to buy a body box. It was $400.00! For a cardboard box!! I called the manufacture of body boxes, and they were selling it wholesale for $19.00! My God! That’s a mark up!

I asked them if I could order just one. They said no, they only sell to funeral homes, not individuals. So I called the funeral home and asked if I could use a refrigerator box. No - not allowed! Crazy! They got us all over a barrel! If you would like some fact's about the true cost of end of life services refer to this website: Funerals and Rip-Offs.

Some good news: I found out that I get my burial paid for by the Osage tribe for up to $3,000.00 - and I can be buried anywhere in the United States. That's the bit of land we American Indians get back from the genocide of the Indian Wars and the land that was stolen from the indigenous people by the white immigrants of the "New United States".

 So, awhile ago I saw this great talk on TED, by Jae Rhim Lee, about cremation and how it releases toxins into the air, and Jae came up with a death suit made of dirt, mushroom spores and bugs. That sounds appealing to me, you get a jump start on giving back to the world. I’d rather be a tree than be under one.

Another interesting thing about what happens to the brain when near death, is that there is a defense system in place inside the Pineal Gland called Dimethyltryptamine (DMT). When the brain is in danger the pineal gland releases DMT creating white light and psychedelic epiphanies. This DMT can be found in most living things and is easy to find in certain plants. It is used in ceremonies in the Amazon jungles, to see the reality of the world. 

I found this interesting - because while watching You Tube videos of people's experiences I recognized that I too had that experience in the hospital when I was in my first round of IL-2. What I wrote back then mirrors what these many people experienced in their life changing epiphanies. 

Written on March 27th, 2011.

The Meaning Of Life Between Each Blink

I kept the DVD player going day and night - it got easier to watch, it became great company. The thing about it was, that as the days went on - I started to see things behind the images. There were bright yellow, trimmed in black, triangles and rectangles holding all the images in place. Each particle of an actors face was hinged on one of these geometric shapes. I could only see them when the scene changed or when I blinked. I noticed as I reached the higher numbers in the amount of doses I took,  I could see there was something behind everything that existed when I blinked.  Maps, formulas, and equations squashed in-between the spot where your upper and lower eye lid meet. These images showed how everything is put together, how all things work - the secret to life if you will.  I kept thinking that's so much information for one person to know. How could I possibly retain it all. So when Dan popped in to watch over me I tried to forget about it and instead told him of my animal friends waiting for me at home. Dan asked which friends? And I replied, " Beaky (our sweet parakeet),  and you know, the furry hippo!"  Dan just laughed!

Quotes on Death

I'm not afraid of death, I just don't want to be there when it happens. - Woody Allen

I'm strongly against it! - Woody Allen

What if everything is an illusion and nothing exists? In that case, I definitely overpaid for my carpet. - Woody Allen

From my rotting body, flowers shall grow and I am in them and that is eternity. Edvard Munch

Never, never, never give up. Winston Churchill

I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear.

So I guess I'm just doing my best to live and keep on the edge of excitement and creativity, and confront my fear to make friends with it, and learn from it. I've been practicing meditation, I find it hard - but I want to learn to be with myself and be aware of the world around me - I'm sure there are so many things I've paid no attention to in the past.

Funeral stills from Who are you Molly Magoo

Love to everyone who has been so caring - it's been very special to know I have such great support  around me. It's one of the things that keep me going. Thank you!

I would love it if anyone that reads my blog would become a member of my page - but don't feel that you have to.
And if anyone wants to share about their feelings of how they want to go or what they think what happens at the point of death. I'd love to know your views. Just make a comment. I'd be interested in what other people think. Love!


  1. Dear Letha, the thing I probably hate most about life is the not knowing what is going to happen, how it will all turn out. Your fears are thus completely understandable to me, but it is your bravery in the face of all those unpredictable day-to-day question marks that is incredible, extraordinary, and inspiring....I never really believed in any kind of afterlife, but we do keep my mother's ashes in the house rather than in a cemetery or a mausoleum, and it gives me some solace to think she is still somehow close and present.

  2. I love that. I understand that want of continual contact to feel like she is still a part of your lives. It's just interesting how a lot of us (people) never give a thought to death and what that means until we have it up in our face by having a loved one pass, or having to confront our mortality. I certainly never thought of these questions before my illness. It's hard to know what I feel about it all. In one way I'm acceptant of it - but in other ways I'm terrified and don't want to go! Thanks so much for sharing Elana! I love you!

  3. Hi Letha, I love your writings! I think that sharing your thoughts and experiences the way you do is something wonderful and noble. It seems to me that most people avoid thinking or talking about these types of existential issues and about our own mortality, but it is really important and beneficial. I just recently read Irvin Yalom’s Staring at the Sun: Overcoming the Terror of Death. It was really a helpful book for me. I’d be happy to send you an Ebook copy. I think everybody should read Yalom. That whole school of Existential Psychotherapy with Victor Frankl, Rollo May, Yalom and some others is something I just recently found, and it’s been impactful I my life.

    Has meditation been helpful for you? I find it is very difficult but beneficial.

    It may be my imagination, but the Lloyd Pack LP strikes me as a very existential record, Pale Afternoons (beautiful song!) and Intruder in the Grass especially. I love The Lloyd Pack! I’m excited for you Siltbreeze record aswell!!

    1. Thanks Daniel,

      My meditation is slow but it's the practice - I keep at it. I'll look out for Yalom book at the library. I'm reading Jon Kabat-Zinn and Viktor Frankl at the moment. Thanks for sharing Daniel. it's a good title, Overcoming the Terror of Death. Something I'd love to do.

  4. There's nothing wrong with terror as an emotional response, it's absolutely normal and appropriate. There's other stuff like love and comfort and joy and humor and sharing and creating and a whole gamut of co-existing things and easier states of mind that that life has to offer. I really hope telling me about your terror helps free your mind up some so you can get back to feeling and thinking more about that other stuff.

  5. There are things I can not understand but I will learn it. I think nothing is too late. Then I realized that I had improved a lot.