Tuesday, December 30, 2008

A Collage of Thoughts

My energy was a tiny bit better today. I'm grateful for it. It's surprising since I was at my new doctor's office for almost 2 hours yesterday. Most of it spent waiting.

I don't know what to think of the new doctor yet. He specializes in HIV medicine so I was hoping for more. I don't think he has any experience with cfids. He found my case quite "puzzling." He seemed nice. He's probably in his late 60's. He also seemed a bit forgetful? Or preoccupied maybe is a better word. At one point I said I've developed a buzzing sound in my ears for the past 3 weeks. He barely glanced up and mumbled "hmm. Well you're ears looked fine." I thought to myself, "That's interesting since you didn't even LOOK into my ears." He was surprised at how high my EBV titers were. That surprised me since he's an HIV doctor. I've seen many people post titers way higher than mine. On the one hand I'd like to keep searching for another doctor. On the other hand I liked that he said my case was interesting and challenging and he liked a challenge. He mentioned a couple times that he thought I might have a "slow virus." I'd never heard that before. I got home and looked up the term on the internet. He has to be wrong though because the "slow viruses" are all fatal. Slow viruses have along incubation period (months to years) with a frequently slow onset resulting in severe illness and/or death.HIV and AIDS are examples of a slow virus as is Creutzfeld-Jaakob disease, Mad Cow Disease, subacute sclerosing panencephalitis, and a certain type of leukemia. Who knows though maybe cfids is a slow virus that does result in death-it just takes a lot longer.

One could make the argument that everyone on this earth has a slow virus. After all we are all dying even as we live.

I wrote my dissertation on death. It wasn't on death in the literal sense but it compared the Freud and Jung's views on death. It included a chapter on Freud and Jung's personal experiences with death and how it informed their theories. I was surprised to see just how much it impacted both of their theories. Freud argued that sexuality was the most repressed phenomenon. I argued in my dissertation that, at least in this culture, death is.

I'd like to think of myself as having more courage and standing on the side of Jung when it comes to facing death but I find that I'm as terrified of it as Freud was.

Having an illness like this forces me to think a lot about death. Is the chest pain a warning sign of an eventual heart attack? Will the viruses turn into cancer? Will I have the courage to withstand this illness at all?

To comfort myself I turn to poetry, spirituality, and Jung. Rilke is one of my favorite poets. He died on 12/29/26 at age 52 of leukemia. His poetry is really about love, death, and ultimately life.

I'm trying to develop a positive relationship with this illness. This five ton weight that has imposed itself, uninvited, upon me. It's such a curious phenomenon. Medicine has no cure for it, there are no tests that can diagnosed it directly, yet it affects almost every system in the body.

Energy is life. Yet this illness means living without energy so in a way it's almost like a living death. Not literally, of course. I'm not talking about this to be morbid (my goodness I feel so apologetic for talking about death in this blog-it's very telling about how our culture views death and illness for that matter). I'm trying to separate my sense of self from that as shaped by this culture which views activity as meaningful.

I don't know how to view this illness in a positive light. I'm still new at it. In my best moments I see it as a vehicle for transformation. In my worst, something to survive. But I don't want to live the rest of my live simply existing day to day.

I've decided to take an online self help course in how to manage this illness. I need help.

I find that, at least as the first full year of living with this illness closes, that I'm looking back a lot. I remember leaving my practice for the last time on December 15, 07. I remember how slowly I shut the door to my office knowing it would be the last time. Whatever my future holds, it was the last time I would be at that office. It was as if I was clinging to the past by slowly shutting the door and then finally hearing that resounding click of the lock forever silencing the work that went on between myself and some truly beautiful souls whom I was lucky to spend an hour with each week for many years. Or I look at pictures taken of me in July/August 07 as I started getting sick. I would search looking for some sort of sign of what was to come.

One of my favorite myths is that of Orpheus. Here's a very, very brief summary of it from an encylopedia of myths:

Orpheus was son of the great Olympian god Apollo. In many ways Apollo was the god of music and Orpheus was blessed with musical talents. Orpheus was so sad about the loss of his love that he composed music to express the terrible emptiness which pervaded his every breath and movement. He was so desperate and found so little else meaningful, that he decided address Hades. As the overseer of the underworld, Hades heart had to be hard as steel, and so it was. Many approached Hades to beg for loved ones back and as many times were refused. But Orpheus' music was so sweet and so moving that it softened the steel hearted heart of Hades himself. Hades gave permission to Orpheus to bring Eurydice back to the surface of the earth to enjoy the light of day. There was only one condition--Orpheus was not to look back as he ascended. He was to trust that Eurydice was immediately behind him. It was a long way back up and just as Orpheus had almost finished that last part of the trek, he looked behind him to make sure Eurydice was still with him. At that very moment, she was snatched back because he did not trust that she was there.

Orpheus's turning back is central to this story. It is meant to teach us about the ways of the soul, about its songlines, which lead us in another direction. His turning is meant to teach us that the orphic moment of the soul, is that moment of transformation when, in Nietzsche's words, 'amor fate', one begins to love ones fate.

His turning allowed him to reach his true destiny which ultimately was to play his music out of his sense of grief at losing his beloved once again. His backward glance ultimately ended up shattering his former ego.

Those who suffer from me/cfs end up losing our energy over and over again. We think we are in a movement towards health only to have it taken away over and over.

Love, loss, and the descent of grief have made Orpheus more conscious of his gifts and the responsibilities that flow from them. His descent has made Orpheus into a shaman, which his origins had already prepared but which had to be chosen, and which once chosen made him into an exceptional poet and musician.

Orpheus descent changed his vision. He now sees life with and through the eyes of the dead and in doing so becomes a being of the soul, freed from the weight and expectatations of his history and freed into his larger destiny.


Pris said...

I could empathize with this post. In my first few years I went from doctor to doctor since none seemed to know where the sun rose. I had an MRI, spinal tap (from a smirking neurologist who thought I was neurotic, not sick)...oh, it goes on and on. Eight years into the illness I found a doctor an hour away who really knew the illness. I saw him until Jan of 2008. He'd burned out, closed his clinic down from having a psychologist on staff, neurologist, P.A.'s, a nutritionist, etc to finally just him. He then dropped Medicare and charged 250 an hour. I couldn't afford that so finally found a local internist trained in India, but interned and certified here, who at least knows about CFIDS but it's 10 minutes in and 10 minutes out. He's not going to take me anywhere new. My last doctor got me to the point that I could have some sort of life. I had nothing before that...just a blurred stumble around the house, pretending I was a POW surviving until I escaped. I have the tinnitis, too. See a trained ENT or an audiologist for that. CFIDS or no CFIDS, the treatment that helps that is listening to white noise (static). I keep a sound machine going by my bed all of the time. Over the years it's helped, though it's stirred up again right now since I have an ear infection. Fun, eh?:-)

cfswarrior said...

Hi Pris-

Thanks for visiting my blog! I'm glad to hear that you've had some improvement. I really understood what you said about living like a POW-I've used that analogy myself. It sure feels that way. Thanks for the advice about seeing an ENT-I'm going to do that. I kept thinking it would go away but it's not.

I'm sorry to hear you have an ear infection and that it's worse. I know-it's like the fun never ends.

What do you think of antivirals?

I look forward to more contact!


Pris said...

The only antiviral that's had limied success in a few people has been ampligen and it's a long way from FDA approval. Mary Sweitzer who's been a spokesperson for cfids took it in a study, then had permission to continue it. It cost her thousands but she and her husband had the money and felt it was worth it. Next, her doctor giving it died or moved away. No other doctor remotely in her area was authorized to give it. She began to decline. Her only choice was to move and live apart from her family to get the med on a regular basis.

Others have taken it to no avail.

I saw the immmunologist who was able to measure immune system overactivity with tests he'd worked up himself. He really was a brilliant man. His approach to treatment was to remove as many factors that trigger the immune system as possible, ie I take probiotics, I avoid allergens when possibe by using no chemicals in the house, clothes are washed in fragrance free dye fee soaps, trying to keep stress at a minimum, etc.

In my case, my CNS was so overstimulated that light, noise, anything made me shake inside. He finally gave me klonipin and that enabled me to have some semblance of a better life again. Doctors are very reluctant to give that medication for obvious reasons but for me it was the insulin for the diabetic that allowed me to use a computer for the first time, to tolorate a little bit of tv, some quiet music. If you can already do those things, that med wouldn't add much for you.

Wishing you luck!!