Friday, January 17, 2014

Living In The Shadow of Orpheus...Part I

In addition to not having much sleep the past couple nights I've been pushing myself so as to be around people as much as possible right now. I don't want to be alone in this room while feeling the grief. I let myself get close to this woman and opened my heart up to her. I think all of us know how important friendships are when struggling with this disease. Especially someone who wanted to learn about it. To lose someone like like her to suicide....I'm finding it incredibly difficult. Not much appetite, difficulty sleeping. The images playing over in my mind. Because the people who found her were mutual friends, and needed to talk about it, I have the details of what happened in my mind. I'm having to fight the images. I know with time they'll ease up. I forgot how exhausting the experience of grief is.

I don't know how this post will turn out given the level of exhaustion I'm feeling but I don't want to try to sleep and do the tossing, turning, replaying things in my mind. I can't concentrate on TV or a book. I want to focus on writing about something that feeds my soul and who's myth can express a poetic way of the experience of this disease.

I've long been captivated by the myth of Orpheus. There is something tragic, haunting, beautiful in the myth. Rilke, one of my favorite poets, wrote a series of poems in his book "Sonnets to Orpheus". One catalyst that spurred Rilke's writing these poems was the death of the daughter of long time friends of his. He was deeply shaken by her death and dedicated part of his "sonnets to orpheus" to her.

I guess these next series of posts with be as much about the myth of Orpheus as about Rilke's "Sonnet's To Orpheus".

[Note: the results of the Stanford Cytokine study are being released to participants today at 4:00 PST. A video will be released to those who can't attend the meeting in person. If I can I'll post the results of the study.]

There are a few different versions of this myth. I tried to find the most abbreviated version that captures the themes I plan on elaborating on later. First-an abbreviated version of the myth of Orpheus (for those who don't know it):

The story of Orpheus of Eurydice is a story of beauty and tragedy. It begins with Orpheus, the best musician that ever lived. One strum of his lyre, one note sung, and beasts would crawl to him, rocks would move to be closer, trees would leave their places to be near to him. They called him a sorcerer for his power, and perhaps he was, for he was the son of the MuseCalliope (1) and Apollo. Apollo was the one who gave him his lyre.orpheus.jpg
He lived his life simply and carelessly until the day he met Eurydice (2). She was a Dryad, and their love was perfect and unbreakable. Orpheus also drew flocks of women to him, but only one woman could capture his heart. The shepherd, Aristaeus, saw Eurydice's beauty, desired it, and tried to take her unwillingly. She ran from him. Ran in terror, without thought to her step, and so it was she stepped on a viper in her flight. The venom of its bite killed her at once, and Orpheus was inconsolable. His grief was bitter, but he did not let it lull him into a stupor. This led him to only sing about grief. Finally, he decided to take action.
With his lyre, Orpheus descended into the Underworld. A normal mortal would have perished any number of times, but Orpheus had his lyre and his voice and he charmed Cerberus - the three-headed monster dog of Hades who guarded the Underworld - into letting him pass. Facing Hades and his cold Queen Persephone (3) he played for them his sorrow at the loss of his love. The heart that was frozen by Hades' abduction melted in Persephone’s br east and a tear rolled down her cheek. Even Hades could not help weeping. They let Orpheus through to Eurydice, but warned him very carefully: Eurydice would follow him into the light of the world and once she entered the sunlight she would be changed from a shade back to a woman. But if Orpheus doubted, if he looked back to see her, she would be lost to him forever.
He turned and left the dark hall of Hades and began his ascent back to life. external image 117-orpheus-and-eurydice.JPEGAs he walked he rejoiced that his wife would soon be with him again. He listened closely for her footfall behind him, but a shade makes no noise. The closer to the light he got, the more he began to believe that Hades had tricked him to get him out of the Underworld that Eurydice was not behind him. Only feet away from the light Orpheus lost faith and turned around. He saw Eurydice, but only for a moment as her shade was whisked back down among the other dead souls. One simple mistake, and Eurydice was lost forever.
Orpheus tried again to enter the Underworld and demand her return, but one cannot enter twice the same way—and no other way was open to him. All that was left to him was death.
He lingered about for seven days without drink, food, or sleep. He eventually committed suicide, but the Muses mourned the death of their son and prodigy, and saved his head to sing forever.

In another version the myth ends like this:

Orpheus was inconsolable at this second loss of his wife. He spurned the company of women and kept apart from ordinary human activities. A group of Ciconian Maenads, female devotees of Dionysus, came upon him one day as he sat singing beneath a tree. They attacked him, throwing rocks, branches, and anything else that came to hand. However, Orpheus' music was so beautiful that it charmed even inanimate objects, and the missiles refused to strike him. Finally, the Maenads' attacked him with their own hands, and tore him to pieces. Orpheus' head floated down the river, still singing, and came to rest on the isle of Lesbos.

I thought I'd be able to write more but I can't due to exhaustion so will continue tomorrow or Sunday. After reading this you might think "what does this have to do with the experience of living with this disease?"  Come to think of it I have no idea. Ha! Seriously, it does. The reasons why will be addressed in the next few posts.

Wednesday, January 15, 2014

Deeply Shaken....

I begin this post in a rather wordless place. I feel sick inside and a bit devastated. A few months ago I became friends with a couple people (a few). I felt an immediate connection to one woman in particular. We hung out, talked on a deep level. And I found something precious return to me--my sense of humor, a bit more self-confidence.  We shared so many commonalities it was a bit uncanny but she was like that.  We both agreed that we felt such a deep connection that we'd make each other chosen family.

She was the only person, out of all the people, I'd met who wanted to know more about this disease so she could learn how to be supportive. That meant so much to me.

Around Christmas time I started crashing so had to miss several functions including a get together on New Year's Eve, football games, dinner, lunch, meetings.  She sent me a text asking me why I'd dropped out of sight so I told her and that was when she told me to teach her about my disease. She didn't shy away from it.

I was isolated for so many years, had lost my confidence completely. When we met I was a pretty broken person. But around her I felt my old self starting to return. I began to laugh again. She laughed at my jokes. Friendships mean the world to me now because of the isolation.

When I make friends in the world of ME or lyme or whatever I know there's the risk of loss. Someone can get really sick. Someone can die (and people have). Or someone can commit suicide (and people have).

So I was completely unprepared today while getting out of my car to attend a meeting when a mutual friend approached me with a stricken look on her face, put her hand on my shoulder and said "I have some really bad news".

And proceeded to tell me that our friend committed suicide yesterday.

She had sent me a text at 11:40 Saturday night. It was unusual to get a text from her so late. She said didn't care what was going on with me (illness, depression) but that she missed me and she loved me.  I responded in kind. I shared with her a little of what was going on with me but deep inside I felt an alarm bell go off. She didn't respond so I assumed she'd gone to bed.

Earlier that day she'd sent a text saying she was in a really bad place and maybe she'd see me at a meeting. I told her I'd be there and looked forward to seeing her. I got a text about 15 minutes later saying she was in a really bad place emotionally and she was going to call a close friend of hers to she if she could "talk her out of it". If I'd only followed up.

I thought I'd talk to her Sunday. If not definitely on Monday. When I didn't hear from her I sent a text yesterday early afternoon. No response so I sent another one later that day wondering what was going on.

But it was too late.

The coroner estimated she'd killed herself anywhere from 4:30 am Tuesday to mid-morning.

I knew she was having a hard time. We had some talks about it. I didn't expect this would be the outcome.

I feel sick inside. I'm so very, very upset. I hung out with friends for most of the afternoon today. One guy looked at me and "you have to promise me you'll never do that". He repeated himself three times. We are all shaken-deeply shaken.

I'm going through the "what ifs and I should haves"....I should have known. God knows it's what I used to do for a living. Getting that text Saturday night should have alerted me. If I hadn't still been crashed maybe I would have been more on top of it. I should have listened to that inner voice. I should have known. What if I'd called her Sunday? Would she still be alive?  What if I'd called her Monday? Would she still be here? I know better to ask these questions but I still think "what if..."

Worst of all is knowing she was in trouble and hurting and I can't talk to her about it. I can't give her that hug and tell her to hang in there.

I didn't get a chance to tell her goodbye.  But I did get to tell her that I loved her.

It all feels unreal yet horrible at the same time.

I wish so many things. I wish the help she sought was available sooner. I wish my phone was turned on when she tried to call me. I wish I hadn't crashed so I could have spent more time with her. She was one of my first real friends, probably my first real local in-person friend, since getting so sick and since the break-up.

Though I miss her and miss all the future we would have had together as friends, I know she is at peace now.

Wednesday, January 8, 2014

What I Want to Know...

I want to know why, after decades of this disease, we do not have any standard way of diagnosing it. With the long history of various doctor's studying this disease why haven't they come together to publish what they know about the common blood markers found in M.E. patients. The information is out there.

We need to be able to walk into an MD's office, describe our symptoms and be given a test to see if this is what we have.

Think of how many lives would be spared. How many suicides prevented. How this disease would be able to be diagnosed at the mild or moderate level and spare those who aren't diagnosed early enough, who end up trying to push through symptoms, and consequently spend countless years suffering the effects of severe M.E.- left bedbound and ultimately abandoned.

I want to know why, when I walk into an MD's office, I get told there is no such thing as ME and that I must be suffering from some other "real" disease like cancer and then be subject to a series of tests. MD's inevitably get pissed off when tests come back normal as if I've somehow fooled them.

For God's sake why in the hell does the National Institutes of Health spend $16 million dollars on male patterned baldness and $3 million dollars on M.E. ?! Why don't people fight for us?

There continues to be such a stigma attached to this disease-it's gone on for decades!  Why does this feel like having a modern day version of leprosy? Or why it feels akin to admitting to a committing a crime upon 'coming out' with the name of this disease?

Variation on a theme once I have to disclose I have a chronic illness (only after having to cancel several planned outings or explaining why I can't go to certain events due to the possibility of passing out):

Me: Um...I'm sorry I have to cancel again. I don't want you to think I'm a flake. I have a chronic illness that limits my activity.......
Them: "Oh-what's the name of your illness?" 
Me: " has a benign name but it's really a serious and devastating disease. It involves the immune system, brain, endocrine system."
Them:  "I'm sorry to hear of this-what's the name of it?"
Me:  "It's called Myalgic Encephalomyelitis."
Them:  "That sounds Horrible!"
And then inevitably I feel guilty and blurt  out...."in this country its called "Chronic Fatigue Syndrome."
Them:  silence............."oh"...said flatly (as if I've fooled them into thinking I have something serious).   "I have a friend who has that. She's tired a lot too but when she exercises she feels better.  Have you tried exercising?"
Me:  Sigh. Here we go again...

As an aside why can't people respect issues associated with MCS. They are so attached to their chemical scents. My housemate refuses to stop using those stupid dryer sheets. The vent is below my bedroom. He does laundry CONSTANTLY (he has OCD).

I have an idea for a research study that I'm exploring. I have started a literature review and am surprised there is no existing study, at least not that I've discovered so far.  I have a few advantages for conducting such a study. I'm familiar with the type of research involved with this sort of study. I have some training in grant writing-albeit a long time ago. For my dissertation I was one of the first to do a research study utilizing this particular method. I was one of several Ph.D. candidates featured in a book written by a professor on research methods. The content of my dissertation was original so I have experience doing original work and am familiar with what is involved.  I happen to be affected by lyme, toxins, viruses, bacterial infections, have a poorly functioning immune system, and have the honor of also having a lot of neurological symptoms.

I was once at the severe level. I remember a few months after being diagnosed when just the act of talking felt like an effort. I would lay in bed watching tv. When my then partner would ask me a question or say something that required a response and feeling alarmed at the effort it took. I didn't want to let her know because I didn't want her to be frightened. But she already was. Terrified. We both were. But we didn't speak of It. We became caught in the maze of M.E. That horrible, awful maze that is M.E.--that destroys the lives of all that it touches.

There are times when I have severe neurological symptoms. Fortunately it has only been a day at most but I know that's what awaits me if I don't pay attention.  When those neurological symptoms occur the one question that strikes fear in me is "what if I end up this way forever"?  I remember similar questions would get uttered by friends with HIV when they would catch a cold-"what if this turns into pneumonsystis pneumonia?"  What if that bout of forgetfulness is the beginning aids dementia?

Part of the reason I'm considering this again is because I've been re-experiencing some bad cognitive symptoms (word finding difficulty, difficulty with writing, etc...) similar to when I was first getting ill  I'm also having a re-occurrence of anxiety-the out of the blue anxiety like I did at the beginning. I'm a little worried about it-worried that I pushed myself too long. And there is also an increase of OI symptoms which likely accounts for the increase in anxiety.

Anyway, this research project would be a huge undertaking so I'm carefully considering it.

Oh, in case anyone was wondering-I did put up two posts and then take them down. Stuff is going on with my housing. Could use some positive thoughts about it....

Mumford and Sons-Ghosts that we knew....

Monday, January 6, 2014

Disturbing News-"Secret Meeting at NIH-today and tomorrow..."

A disturbing post from Jennie Spotila at Occupy CFS

Worth a read...