Wednesday, December 31, 2008

2007

I can't say I'm sad to see 2007 end. Usually New Year's Eve brings with it a lot of reflection on how the previous year has gone while at the same time developing a vision of what I wanted my life to look like in the coming year.

Tonight I find myself sitting with deep disappointment that my health isn't where I'd hoped it would be. Really though, how could it with all that damn mold we were living in. But still. I'm worse than I was one year ago with some added symptoms. I fear I'm starting to develop vertigo. I had a mild sense of it today a few times. It scares me. I don't want that too.

I've been thinking more about my visit with the new doctor and I think I will look for another one. I think I need someone who has at least heard of this illness. He wondered if I'd had some sort of stroke that brought this on. He also failed to follow up on the chest pain that I both told him about and filled out on the form in multiple places. I tearfully told him of my increasing depression and wanted to start an antidepressant. That too was ignored, or rather, unheard.

I miss Dr. Kliman. He would have prescribed an antidepressant, referred me to a cardiologist, and then we would have sat and talked about life. I have a feeling this new doctor is going to order a lumbar puncture (he asked if I'd had one) as well as an MRI of my brain.

This new doctor acknowledged that I probably wanted to start treatment right away but he wanted to review my medical records. He is going to see me again on 1/8. I'll keep that appointment but will look for a doctor in the meantime.

I really need some hope and I really need to have some improvement next year. I'd also like to experience a sense of peace and acceptance about this. It'd be nice if I developed a deep sense of spirituality but to be honest, at least tonight, I have no hope that, if there is a God, that It even listens to my pleas and prayers.

The hard, bitter lesson I've learned this year? There are no guarantees. There's no guarantee that if you do the right things that things will work out. I got a taste of that when my mom died, this has just compounded that. She did everything right but developed cancer and died 44 days after being diagnosed.

I remember one night she had a deep spiritual experience where God told her we (her family) would be alright. The knowledge gave her a sense of peace. Obviously God couldn't see very far ahead because here I am 13 years later with a fucking devastating disease that seems to be slowly progressing. I have nothing to offer anyone. Nada. Nothing. Just a body occupying space. Am I angry about it tongight? You bet. I'm angry that I have this tinnitus. I'm angry that I can't walk a fucking block. And I'm angry that I'm having feelings of vertigo coming on. I can't do volunteer work. I can't live my dream. I got my Phd and blam. I'm less than 300 hours away from having my hours towards licensure. And you have to have 3000 hours. I was working my ass off. If I don't have the required hours by January 2010 I lose them all. Every single hour that I've worked so hard to accumulate.

I've made a lot of mistakes in my life. I regret them. But I didn't deserve this. Nor does Daphne. It's fucking not fair.

The song that's been in my head today? From A Chorus Line:

Kiss today goodbye
the sweetness and the sorrow
wish me luck
the same to you

Maybe the best that could come of my life now is that people look at it and think "thank god that's not my life, her life makes me so grateful about mine." I've become that person. Ugh.

Daphne just tapped me on the shoulder to point out that it's not 2007. It's 2008. See what I mean?

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.

Sunday, December 28, 2008

The crushing fatigue continues. Sometimes it crushes my spirit as well. I lift myself back up literally and figuratively over and over again. I'm discouraged as it seems nothing I'm doing or have done is doing much good. I keep trying to tell myself I'm in a crash. It's just that it keeps going.

Christmas day was not one my favorite days. Daphne had so many pets to take care of and had to be away much of the day and into the evening. Around 5 I decided I couldn't take being alone in the apartment anymore so I got in my car and drove to the local cemetery. It's actually somewhat of a tourist spot and quite peaceful. It's only about a 1/2 mile away. I drove through the cemetery and had brought along my book. There were people milling about but the cemetery was getting ready to close.

I needed new thick socks so I drove another 3/4 mile to Long's which happened to be open until 6. I was feeling a little woozy but didn't want to go back to the apt. I made it to Long's. I picked out some socks, stood in line and congratulated myself on making it through a bout of wooziness while in Long's. As I left the store I suddenly felt disoriented forgetting where I had parked the car. I looked around and felt a bit panicky at not being able to find the car. Everyone has this sort of experience I know but it's a bit different when I have so little energy and had been battling wooziness. I saw my car over in the next aisle. I thought to myself almost cheerily-there it is! It's the one with the lights left on! Then I thought with a thunk in my stomach-oh no, it's the one with the lights left on. I didn't' think it'd be a problem since the battery was fairly new and I wasn't in the store very long. I was wrong. The car wouldn't start. I swear it's the same sound the cells in my body must make at trying to create energy. I panicked. There was no way I could walk home. I didn't know where Daphne was. There was no one I could call and Long's was going to close soon. To make matters worse I was dressed in HUGE sweat type pants-warm but huge. My hair was also huge.. And, I was wearing size 10 slippers (my feet are a size 8). People were in a hurry and quickly looked away as I approached them for help (they probably thought I was going to ask them for money).

As person after person looked away and hurried off I started feeling a sense of desperation. A van pulled up and a man and a woman got out, both clearly on crack and looking a bit scary. The woman had no teeth and kept staring at me. I realized what an easy target I was. Even though I'm quite street wise due to the work I used to do, I felt suddenly vulnerable. There's no way I could have defended myself should something happen. I felt incredibly alone and vulnerable and found myself bursting into tears. It just all suddenly felt so incredibly unfair. Can't something got right I found myself silently shouting at God who remains silent?

I turned toward my car with it's hood propped up in the hopes that someone would see I needed help. From behind my I heard a man's voice say "excuse me, ma'am-do you need some help?" I turned toward him tears streaming down my face. "yes-I do" I said in a trembling voice. "My battery seems to have died." He smiled. "No problem-I'm a mechanic and I have jumper cables in my car." He looked at me closer and must have seen the tears because he said "don't worry-it's going to be okay. I'll go get the jumper cables." As he jogged back towards his car a sob escaped me. I couldn't hold it in anymore. He hooked up the jumper cables which solved the problem. Then he was on his way. I put my head on the steering wheel and just sobbed. I hate being dependent on people. I hate being scared of people. I hate this illness. I hate what it's done to me. But I was very grateful for this man who happened to be in town visiting family.

Tomorrow I see my new doctor. I had to fill out some paperwork. I found it overwhelming thinking of trying to explain everything to the new doctor. I copied all my labwork, filled out the forms, prepared my questions (since I can't count on my memory), and copied the ssdi report that my csf doctor wrote. Then I made a list of all my medications and supplements. I find myself hoping that the doctor will be able to help somehow but even the csf doctor that I've been seeing hasn't been able to help.

I have nothing inspirational to write. I have no hope in my heart. Sometimes it's just like this. The only hope that I have is that tomorrow will be different.

I do have another symptom though. It seems that I now have tinnitus. It started after we moved here. It's been with me 24/7. Today I'm tired of it. There's things I can do like use my ipod but it's starting to drive me crazy at night when it's quiet except for the locusts buzzing in my head.

Wednesday, December 24, 2008

Cher

I was halfway watching Ellen who had Cher on as a guest. I was doing some reading and every now and then would glance at the TV. I noticed Cher seemed a bit subdued. I started watching more closely and noticed the familiar look of CFIDS-a tired sadness behind the eyes, very little physical movement, answering Ellen's question's but not expanding on them, and then saw the quiet fatigued smile as Cher watched some contestants try to earn tickets to her show.

I thought to myself she has CFIDS. I quickly dismissed my thoughts because I'd never read anything about Cher having CFIDS. I thought maybe she was tired or annoyed with Ellen or something.

I decided to google Cher and CFIDS and sure enough there it was. Cher was diagnosed with it back in 1998. At the time they said she had EBV. Apparently at some point she went to Germany for treatment (I do wish we had access to treatment in Germany-they are doing some fabulous things over there with this illness as well as chronic lyme and work on treating myocarditis). She had a bad bout with it as recently as this year. My guess is she is struggling with it now. I doubt someone with this illness would notice the subtle telltale signs.

If you look at pictures of people with this illness you'll find this look. It's like an inner light has been subdued but gets reflected through the eyes. There's a sad quiet stillness too. My heart goes out to her.

I imagine there are many people out there who suffer from chronic illness who are having to spend the Holiday alone. Though I don't know your names, know you are not forgotten.

During illness the soul comes out of hiding and shows itself with fresh realizations and new priorities. You deal with issues of life and death and you discover the importance of love and caring of friends and family. It can also highlight issues such as loneliness, isolation, and be experienced as a dark night of the soul.

I believe it can be a place of transformation too. I just don't know what it looks like or feels like yet. Illness uncovers a world of meaningful issues that may have been covered over with the business of living out in the world. Now there are no distractions. There are no options but to look closely at what has been unveiled.

The religious scholar Mircea Eliade explores in his journals what he calls
"the spiritual,'religious,' functions of illness." "Illness," he writes, "is the point of departure for the process of personality integration and for a radical spiritual transformation." (Mircea Eliade, Journal III)

Virginia Woolf sets out the scope of illness in her brief essay On Being Ill:

Considering how common illness is, how tremendous the spiritual change it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness...it is strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.
(Virginia Woolf, On Being Ill)

I trust that I'll find meaning in this, and in doing so, a sense of peace.

Tuesday, December 23, 2008

Fatigue

I think there have been very few times in the course of my illness that I have experienced this level of fatigue. It's indescribable. I have been a bit frightened by it at times. Who would ever have thought that fatigue could be frightening? It's such a benign sounding word and definitely not an apt description to describe what it's like. Fatigue is also a word that gets tossed around by people who are truly tired from the consequences of living in a culture like ours but to have it included in a description of an illness such as this does a disservice to those of us who suffer from it.

Laura Hillenbrand in an interview states: "The term chronic fatigue, she says, "is a terrible understatement. Fatigue is to this illness what a match is to a nuclear bomb."

I had to go the podiatrist today for a checkup on my toes. Three weeks ago I had to have part of the toenails removed on my big toes due to ingrown toenails which caused a staph infection and abscess over the summer. I was really worried about how I was going to drive back and forth from the doctor's office which is now about 25 minutes away. Luckily Daphne had the day off so she was able to drive me.

I started myself on antibiotics last week because my right toe was looking pretty funky. It freaked me out so much I didn't say anything to Daphne nor did I show it to her because I knew she would say we needed to see the doctor. Anyway, the funky toe was looking a little better today but the podiatrist was concerned that this was how my toe looked after a week on antibiotics. He did what I was afraid he was going to do which was to press a q-tip all along the side of where the surgery was. A little fluid came out. I did the right thing by going on antibiotics last week. This is something I don't believe in doing at all. I don't believe in the use of antibiotics unless absolutely necessary. Because I was on them for 5 months and it affected my gallbladder the last thing I wanted to do was go on them again but I had a strong, strong gut feeling to just get started on them. I'm learning to listen to that feeling more and more. I think it's vital.

I've started reading a couple Jungian books. I've been wanting to read Answer to Job for a long time now so I started that last night. Unfortunately Jung is an often misunderstood figure. He is brilliant and includes philosophy, religion, alchemy, mythology, imagery, poetry, different cultures-all in an effort to understand the psyche. Although it's a struggle cognitively, especially since getting sick, reading Jung feeds my soul.

The only problem is that things don't stay in my head the way they used to. I'm hoping that will change with continued treatment and rest.

I've decided to start taking Hawthorn Extract for the chest pains I've been having. I don't have any other cardiac symptoms thankfully. I fear that the move (I lifted too many things in an attempt to be helpful) put a strain on my heart and think it's a bit more inflammed. Hawthorn berry or extract is supposed to help heart problems.

I see my new doctor on Monday. I'll ask for a referral to a cardiologist. I don't want to but I think it's important. My heart is also racing at night again so some thing's up. Most likely it's the virus/s. It did this when I first got sick. I don't feel too much anxiety about it. Many people with this illness have heart issues. In fact, Dr. Cheney believes that cfids is something the body develops as a way to prevent heart failure. I don't believe that particular theory but I do believe other stuff he says about the heart.

Some people's heart issues have cleared up with the use of antivirals. People who have heart issues from lyme find it clears up with the right antibiotic treatment.

I'm trying to gear myself up to start Valcyte. I figure I'll start the second week in January. That will give me about a month of being out of the moldy place. I need to get my body to a little bit of a stronger place before starting Valcyte. I'm too weak right now. I ordered a couple immune boosters (Proboost and ImmunoPro) to start taking.

I don't know that taking Valcyte is the right thing to do. Hopefully I'll get some sort of gut feeling about it. There's only a 50-60% chance that it will help but on the other hand there is a 50-60% chance that it will help.

I have a severe case of this illness. At times I think given how disabled I've become from this illness how can I not try it.

Sunday, December 21, 2008

Twelve Steps to Healing

12 Steps to Full Recovery
Cultivating the Healing State
by Tom Oates Jr. reprinted from
The CFIDS Chronicle, Summer 1995

Here Are 12 Concrete Things that I did every day that allowed me to reach a state that removed the roadblocks from my healing path.

1| Keeping A Journal
I kept a daily journal of what I did and how I felt physically, emotionally and mentally. I recorded my dreams consistently and reviewed them every few months to look for recurring themes, ideas, advice. A journal also helped identify what I had done earlier that caused a relapse. It was always a delayed reaction for me: I would feel better, go out and do something that I thought would help build my strength, and end up deep in the pillow for days after, wondering what happened. The journal sped up the learning curve and helped me to identify energy drains.

2| Categorize Everything In Your Life As Either Stressful Or Helpful
I categorized everything as either a stressor or a helper. I eliminated all toxins from my diet: tobacco, alcohol, caffeine, etc. I also found that it took all of my energy to digest a steak, so I dropped red meat. Dairy products seemed to bring me down so I eliminated them. However, pasta seemed to help, as did fresh juices. Even the air I breathed had to be free of dust and pollen.

3| Eliminate All Negativity
I eliminated all negativity. This one is tricky. By now you probably realize that your energy is the most precious commodity on Earth. Don't allow it to be drained by negative influences. I try not to engage negative people, places, attitudes, ideas or anything fear-based. I eliminated all mass media; it's all the same information. If something is negative (or only trying to sell you soap and cars), it will absolutely not help you to heal your life. I can't emphasize enough how important this is. I spent enough time out of the popular culture that I began to develop an internal dialogue that kept me on my healing path.

4| Read Uplifting Enlightening And Educational Books
I read uplifting books about mind-body health, listened to inspiring tapes and used a dream book that helped me decipher my dreams. The point is to focus on inspirational, positive and hopeful ideas.

5| Surrender To The Moment Through Joyful Creative Activity
When I had 15 minutes of feeling good, I used it to pursue something that I wanted to do, something that seemed to energize me without stressing or taxing my body. At first, I simply walked around the back yard taking photographs of the light on the trees and clouds. Then I began drawing and painting from these images. Then I was able to take one class at the local art college. Then two classes, etc.

6| Engage In Non-Aerobic Stretching Meditation Exercise
I exercised in a non-aerobic way that put me in touch with my body and made me concentrate. I learned a meditation exercise called Tai Kuk, a combination of Tai Chi and Yoga, and went to class when my energy level allowed.



7| Spend Time In Silence And Quiet
I spent time in silence and contemplation. I learned to be alone in silence for long periods of time. I was in a chronic state of ill health for a reason. It was my job to figure out what questions to ask.



8| Ask The Right Questions
I learned to ask the right questions. I spent two years asking self-pitying questions that wasted my energy such as: Why me? What can I take to get well? Will I ever be "normal" again? Finally, I began to ask health-inducing questions like: What are my talents? What do I enjoy doing the most? When these questions were answered, I began to ask: How can I develop my talents? How can I use the energy I have in a constructive and joyful way? After I had these answers, I pursued them the best that I could. It's the "do what you love and the health will follow" approach.



9| Suspend All Judgment Of Self And Others
I tried not to judge anything. Because I had been judged and incorrectly labeled by those who didn't understand this illness, I realized that you never know what people have been through.

10| Forgive Everybody Everything
I learned that you must forgive all, especially yourself. The Earth does not judge us as we tear it up, so don't judge yourself for being ill.

11| Love
Love all, especially yourself

12| Be Patient And Have Faith

Surrender


Lately I've been plagued with feelings of uselessness. Added to that is the feeling that I'm destroying someone else's life because I have this illness. The sense of guilt I've been experiencing has been intense. I've felt bad that so many people generously helped us in so many ways with this move and I'm not better. In fact, I've been in a bad crash from all the stress which has left me practically bedbound further adding to my sense of uselessness. It's been freezing in here because of the weather and lack of heat so my toes aren't healing as they should creating a sense of anxiety.

I woke up this morning feeling profoundly isolated and alone. I went to sleep last night feeling horribly guilty at everything Daphne has to do because I'm ill. This morning I thought to myself I just don't want to live anymore and seriously considered putting a call into one of those assisted suicide places.

I don't like writing about this. It sounds awfully depressing and morbid but I have yet to talk to a person with this illness who hasn't experienced these sorts of thoughts. The only reason I'm writing about it is because out of this dark night of the soul comes a sense of rebirth. This sort of dark place spurs me into action simply because it's a place I don't want to exist in for very long.

I got up and decided to make myself a fire and sit in front of it and pray. It helped. I started feeling a sense of peace. I then got on the computer to do some research on recovering from this illness. I found two really good sites that spoke to me.

One woman, Jan Blumfitt, described her experience with this illness as similar to being deep in the water with the surface miles away. She writes:

Like everyone who is plunged into the maelstrom that is M.E., seemingly completely out of the blue, I was looking for a "cure". When people said to me that it could take months or even years to recover, it was beyond my comprehension that this could be the case. It was like being deep under the water and the surface was miles away, but I was trying to find the way up there. Each time I tried something, there was all the expectation that this time my head would get up beyond the surface, and then I would find myself drowning again on the bottom, with all the attendant disappointment and desperation that brought.

So I had to alter my way of looking at things. The picture I formed over the months and years was a set of stairs, maybe fifteen or so to break the surface, and another fifteen to step out of the illness altogether. The first fifteen I realised would be the most difficult because I was operating largely in the dark, but once my head was above water and I could see more clearly, the second fifteen would be easier. I had to become very clear in my own mind what I was going to do and why I was doing it, so that I could keep on doing it even if it seemed not to make any difference at all.
(Jan Blumfitt, 1999)

I found this very helpful. Jan also made another statement that I thought was great. She said that some people who unknowingly may be on the 14th step might try a treatment like hypnotherapy (for example) which happens to be the treatment that pushes them above the surface. People might say "hypnotherapy cured me" when in reality it was only part of the treatments that helped.

It's also important to mention that this woman experienced a deep spiritual connection in addition to the all the treatments she tried. I'm finding this to be true in all of the people's stories of recovery that I've read. The link to this article and others written by her is here:

http://www.webring.com/hub?ring=cfidsinfo (scroll down to Healing M.E. and Chronic Fatigue Syndrome)

The second website I found was written by a man who got ill became housebound and bedbound and then recovered 4 1/2 years later. He writes:

I remember the moment I came down with what was eventually diagnosed as CFIDS. It was a steamy September day. My date and I were standing in a sunflower field outside of Memphis, waiting for the doves to fly over. This year I had looked forward to opening day with anticipation because the birds had migrated on time and in great numbers. At dinner that evening, I struggled to hold an intelligible conversation. I drove home, went to bed thinking it was just exhaustion and did not permanently rejoin the living for four-and-a-half years.

The following is what I realized over long periods of frustration, that eventually gave way to resignation, that turned into a peace that began to teach me. The hard part was getting to the point where my ego was squashed sufficiently to where it had no influence. At that time I was open to all things internal and subtle and I listened.


Progress was measured in years and seasons. Referring to my journal, I would try to pinpoint what caused this or that setback. Seasons would go by with absolutely no change in my condition. I was discouraged, disappointed and had run out of ideas.
The less I did, the quieter I became, and the more I began to tune into the willow trees, squirrels and passing of the seasons outside my window. It just wasn't worth it to venture out into the traffic and chaos of "normal" life. Everything was so loud and nerve-racking and would affect me so strongly. It would take days before I was able to relax and settle back down after driving in traffic or going to a shopping center. I retreated inward.
(Tom Oates, Jr)

After two years of being sick Tom let go of any idea of cure. He began to write down his dreams. He had deep spiritual experiences. He abandoned all external things and began to tune into his own inner nature as well as the rhythms of nature herself. This led him to experience a deep sense of peace.

I am reminded once again that my old ego needs to die in order to create a way for the Self or God to enter. My old ego was shaped by attitudes that are no longer conducive to living given my current circumstances. I believed that in order to be loved or accepted I had to prove myself. Proving myself took a number of forms. At bottom I felt unlovable, a feeling that has been compounded by this illness.

Our culture is very destructive to the inner world. It values the external vs internal, business vs the meandering pace of the soul, material possessions vs spirituality, television vs the imagination, extroversion vs introversion. The phrase "I'm sooo busy" has become synonymous with "look how important I am."

Well, being sick has meant living contrary to the values this culture holds as ideal. Add to that my own ideas that I must be productive, be of service to others, live a rich life full of meaning, write, have a thriving private practice and there exists a recipe for disaster given that I'm ill and the jury is still out as to whether or not I'll ever be able to return.

I need to go inward and focus on developing a rich inner life regardless of what the external looks like and regardless of what the future holds. It's a frightening prospect to think that I may never return to a certain level of functioning.

My old attitudes need to die. After all, death and rebirth are linked.

The other night I was watching Jim Carey being interviewed by Larry King. He's an actor I haven't paid much attention to aside from enjoying his movies but he said something that I've been chewing on. He said "everything that happens to you is the greatest thing that could ever happen to you." Given that I have this illness I thought about what he said. What if this illness was the greatest things that has happened to me? It's not something I want. It's certainly not fun being plagued by such a profound sense of fatigue that I can't even walk around the block, or the chest pain that makes me fear the virus is in my heart, or the wooziness, or the myraid of other symptoms that I experience on a daily basis. His statements made me ask such questions as: What gifts does it have to offer me? How can I transform my suffering? How can I make my own personal meaning from it? And, how can I can I give back to the world in spite of or because of it?

I think the answer lies in looking inward. My pursuit of spirituality has become my highest priority.

I no longer want to die. I want to see what the next chapter brings. The truth is my life is rich. I'm with someone I deeply love, I get to spend my days with 3 wonderful kitties, I have a view of a beautiful tree outside my living room window, I have my books, my ipod, I get to listen to music which is something I love. I get to have contact with a wonderful group of people-Daphne's friends and family. They are truly wonderful, generous, kind, caring people. I have much to learn from them, including Daphne.

I also have the rich experience of a Phd education at a world renowned school. An education which unknowingly prepared me to deal with a most difficult dark night of the soul. It's as if my education not only prepared me to become a psychologist but prepared me to enter this next phase of my life. I met people both there and at the Jung Institute that are famous but down to earth and saw something in me leading them to mentor me in many ways. At the time I thought it was in preparation to become an analyst. But it's also helping me now.

I know I will visit that dark place again and again but hopefully the time spent there will be shorter. I trust though that the dark night of the soul experience will lead to a sense of being reborn. The poem by t.s. eliot comes to mind:

I said to my soul, be still, and let the dark come upon you
Which shall be the darkness of God. As, in a theatre,
The lights are extinguished, for the scene to be changed
With a hollow rumble of wings, with a movement of darkness on darkness,
And we know that the hills and the trees, the distant panorama
And the bold imposing facade are all being rolled away—
Or as, when an underground train, in the tube, stops too long between stations
And the conversation rises and slowly fades into silence
And you see behind every face the mental emptiness deepen
Leaving only the growing terror of nothing to think about;
Or when, under ether, the mind is conscious but conscious of nothing—
I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love,
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
Whisper of running streams, and winter lightning.
The wild thyme unseen and the wild strawberry,
The laughter in the garden, echoed ecstasy
Not lost, but requiring, pointing to the agony
Of death and birth.
(t.s. eliot Little Gidding)

And finally, there has been a tune in my head for the past couple of days but the words remained elusive. This morning the words became clear:

In the arms of an Angel, far away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
In the arms of an Angel; may you find some comfort here
(Sarah McLachlan)

Thursday, December 18, 2008

"Is She Still Sick?"

Asked my new landlord as she was in the other room talking to Daphne. I silently cringed when I heard her ask. Just as I cringed when someone commented on how many supplements I have. Nothing mean or illwill intended by either comment. It's just that I don't want to be this. Sick. And I'm a bit sensitive about certain aspects of it.

There is a lot to catch up on. I'm profoundly fatigued from the stress of the move.

But we're in. Thanks to the people who helped us. I'm deeply grateful for everyone who helped. The downstairs neighbor who was moving out the same day we were moving in remarked as he saw all the people helping us move: "It takes a Village." He had no idea of what was involved. Every single thing that entered this apartment had to be wiped down. Every book, every shoe.

I had a fabulous day on Saturday and a really good day last Friday. I was hopeful that simply getting out of the apartment would be the Fix for me (even though my doctor warned me it wouldn't be).

So. Yes. I'm still sick. I'm crashing badly from everything.

But-I'm still hopeful for some improvement with getting out of the moldy place. Two things I've noticed are I no longer get indentations in my skin when it's pressed and I seem to have lost that feeling that I have something stuck in my throat.

We've been hit by a deep cold spell though mild in comparison to the rest of the country. The heating system in this apartment leaves a lot to be desired but we are being creative in how to deal with it. I've noticed that being freezing cold takes a lot of energy out of me so I'm doing what I can to stay warm. Which means being in bed with the door closed so as not to let any of the heat out.

Yesterday while drinking my tea I could actually see my breath. And I was inside!

The good news is I've found a new internist who also happens to specialize in Infectious Diseases and HIV. He does a lot of work in the community-something that is important to me. When I called his office the person answering the phones took some informationa and said he would talk to the doctor and then get back to me. I guess this is the procedure as this doctor is quite popular. I was honest with him about my illness. I also said I wanted someone who would monitor me while I was on Valcyte. I was pleased when he called back to offer me an appointment. I see him on the 29th. I miss Dr. Kliman though-he was a pretty unique doctor quirks and all but that's part of what I liked about him.

I'm hoping this new doctor will run tests to further pinpoint what is wrong. I'm also glad that he has a lot of experience with infectious diseases and the immune system. Maybe he can help me.

The apartment is very cute. I love the view from the back porch and the bedroom window. The landlady though a bit odd is also endearing. Apparently she bought this building upon retiring and this is her baby. She has maintained it well (although I wish there was a better heating system besides two electric baseboard heaters poorly placed beneath the windows.

I love the neighborhood and am grateful to be back in a familiar place.

More later.

Thursday, December 4, 2008

Update

I have spoken with Lt Spillane of the SFPD. At this point I am hopeful they are conducting a thorough investigation into the death of Dr. Kliman.

Like many of us I will be watching closely to see what happens in the investigation.

Wednesday, December 3, 2008

In Memorium- Daniel J Kliman, MD


I found out some bad news today. My doctor died. He was 38 years old. It's strange because I was thinking last night as I fell asleep how those of us with a serious chronic illness and housebound are often isolated so our relationships with MD's can be that much more meaningful.

This was especially so with Dr Kliman whom I saw monthly. He was the one who referred me to someone who diagnosed me within 5 weeks of seeing him which is relatively unheard of with an illness like CFIDS. He took my symptoms seriously from the get go, did some creative testing, referred me to a rheumatologist (to rule out Lupus) and then prescribed Valcyte.

Each appointment we would spend at least an hour talking about things having nothing to do with medicine. Mostly revolving around his life outside of being an MD so I learned a lot about him. Medicine was his calling. He was devoted to Judaism and an active member of his synagogue on Oakland. So much so that he lived near there and biked to work every day. He was co-founder for a group called a Voice for Israel. Many of our conversations revolved around Israel. He told me about how his nephew's Hebrew name meant "tree". He loved learning languages and was taking Arabic.

The last time I saw him was 11/20. We spent so much time talking that the other patient was getting agitated and threatening to leave so I didn't get a chance to tell him that I thought he was a really good doctor. I had planned on sending him a card over the holiday's saying so. I had also planned on saying in the card how much our relationship meant to me and how much I enjoyed our talks. In fact during our last visit I said to him I felt inspired and realized that just because I was sick didn't mean I couldn't stop learning or studying.

He was eagerly looking forward to his two week trip to Israel starting Thanksgiving.

I always knew where I stood with him. He was vocal about not liking to work with CFIDS's patients because they made him feel helpless. He said he didn't mind working with me because I was so matter of fact about the whole thing-I wasn't trying to get him to cure me. I appreciated his honesty. In spite of his feelings he ran tests and was a good medical doctor. I had decided I was going to continue seeing him even though we were moving out of town and that I was going to have him follow me while on Valcyte since he was covered by my insurance. He was looking forward to seeing how Valcyte worked and told me I would be his first Valcyte patient.

It was also during our last visit that he shared some information with me that leads me to the conclusion that his death was not an accident. Something had occurred a week prior that he was puzzled and a bit rattled about. He shared it with me. I commented how it sounded like a spy novel and was puzzled as well.

He died by "falling" down an elevator shaft in San Francisco on Tuesday the 25th. There are too many questionable things about his death. He was too smart a man to walk into an open elevator shaft. His body was found on Monday.

I always knew Dr. Kliman was there in the background. I could get a same day appointment whenever I needed and he had a brilliant mind always surprising me with the details he remembered about me. I felt safe knowing that if I were ever hospitalized that the hospital would get accurate current information from Dr Kliman simply because he had such a good memory.

It was clear that though he loved medicine that he had many, many interests loved life, and lived it fully. He lived his life with integrity according to his values and wasn't afraid to stand up for what he believed.

It's been very upsetting. I will really miss him. My world is really small right now and he had a big place in it.

שלום עליכם shālôm ʻalêḵem or sholom aleichem Dan Kliman

Tuesday, December 2, 2008

Wrong Place Wrong Time

I spoke with my doctor today. This was the first conversation we've had since I got the mold report. He's a very laid back doctor who usually isn't very firm about things. Sometimes it has driven me crazy because I want someone to say this is what you need to do now. He's a good doctor though-very kind, intelligent, and listens well. I was expecting the same sort of "it might be a good idea if but maybe not" sort of response. Instead I was surprised when he said "you need to move as soon as possible."

I'd been minimizing my shortness of breath to him. It hasn't been my most pressing symptom and I just considered it something I just had to live with even though at times it's been hard to talk on the phone because of it. Lately I've noticed it's worse when I wake up in the morning. It's now accompanied by some coughing. I told him about it. He thinks it's from the mold. In fact, he thinks my cfids was triggered by the mold exposure.

I'm to do salt, baking soda, and Agrumax nasal rinses twice a day to get rid of any mold growing in my sinuses. I'm trying not to think that there might be mold growing inside me. It sounds like a bad science fiction movie. I also have to start glutathione nebulizing treatments. This will help reduce the inflammation in my lungs. He said the nebulizing treatments will be really helpful for my sob (shortness of breath). But I have to go to Santa Rosa for my first treatment because one out of twenty people have some sort of asthma like reaction and they like people to be in the office if that happens so they can treat immediately if necessary.

He also recommended getting Hepa Air Purifiers (or filters?) to deal with any cross contamination of mold spores. We're doing all the right things though. Washing all clothing. We have to get rid of the bed. He said to stay away from any synthetic mattresses, especially the memory foam ones. The off gassing is way too toxic for my body to handle right now so he's recommending a natural latex mattress or something like that. He also said to "trust your nose." If something smells bad or musty-get rid of it. Also that I will pick up mold odors more than other people right now so don't even question if something smells funny.

I told him that the cholestyramine is helping my cognition. He said "great!" I said " do I still have to take Valcyte?" Slight pause. "Yes, you do." Shoot. I don't want to take that drug but I will. He wants me to start as soon as I can but given that we're moving it's okay to wait a little while longer. The side effects can be really serious so I'll have my blood drawn weekly for the first month and then every other week for the second month. "After that we can relax" says my doctor. Apparently 50-60% of people who take Valcyte have a positive response. It takes 6 months or longer to feel it though. And, of course, you have to feel worse before you get better. By month 3-4 if I'm not feeling worse it means it probably won't work for me. So I guess I have a 50-50 chance of having improvement taking this incredibly toxic drug.

He does think I'll have some improvement upon moving though so I'm looking forward to that. Unfortunately the Valcyte will erase the improvement. Who knows though.

We did decide to ask the landlords for some money for some of the expenses we are incurring. A partial list was provided to them. They responded right away but the guy said he's only 7/8's owner so he can't make the decision but will talk it over with the primary owner. I thought about drafting another letter with the CA mold law attached as well as reminding them that we will get a lawyer if necessary and that the list did not include almost $10,000 in out of pocket medical expenses. Not to mention lost wages. The little amount we are asking for is nothing in comparison. We have a mold report, an MD who has said my illness was triggered by the friggin mold, receipts, and proof of 3 major water leaks. Not to mention the mold found on the boxes of my grandmother's dishes, or the mold found in the baskets in the kitchen. I get pretty angry when I think about it. All this could have been avoided if only... I refuse to live in that place though. It's pointless. The fact is this is what's happening. These are the cards I've been dealt. It's not fair. But then who said life was fair?

I refuse to let this win. I know I'll have down days and will come here to talk about it. But it doesn't mean I still won't have meaning in my life. My life has been devoted to the Soul. That devotion will continue. Even if all I can do is blog about it.

Monday, December 1, 2008

Soul

With soul, as with biology, ontogeny recapitulates phylogeny. The experiences of the individual not only mirror and are reflected in the events of one’s time, they also echo the voices of the ancestors, who ask us to continue their unfinished stories and to un-forget those tales, which are so vital to the song lines of the soul. We live in the dark light of their shadows and through our symptoms and dreams we are offered paths of dialogue not only with them but also with the collective dreams and symptoms of our age. But to engage in these conversations it is necessary to awaken to the life of the soul, which, while it expresses itself through mind and body, is neither the life of the conceptual mind nor the life of the anatomical body. Soul, like a metaphor, is neither a thought nor a thing. Indeed it is not just like a metaphor; it is a metaphoric reality, which unfolds as stories lived out in time and through our relations with the world of the living and the dead. [Mirror and Metaphor] A major theme of these stories is the myth of the orphan in exile who awakens to the sense of life as home/work, as a journey of homecoming [The Orphan in Exile and the Journey of Homecoming]

The arc of my life and work these past thirty years has been in service to this task of being a witness to the elusive mornings/mournings of the soul. In the work of the soul the gesture of the witness is a backward glance, which recovers what we have lived through forgetfully and re-members us for an-other beginning. The backward glance re-turns one to his/her heritage as a destiny and offers a moment of transformation when destiny can become a vocation [Ways of the Heart]

These words were written by my dissertation advisor and mentor Robert Romanyshyn, PhD. They echo my own thoughts.

Once the move occurs and I feel somewhat more centered I plan on devoting a majority of this blog to the Soul. My dissertation speaks a similar language as that expressed by Robert. We spent many hours together talking about soul, the Orphan, Jung, exile. I can't even begin to express my gratitude to him for our conversations.

Just because I'm sick doesn't mean I can't write about Soul.

Maybe being stripped away from everything in my life both literally and figuratively has something to do with this journey of the Soul. Maybe it has something to do with exile and homecoming.

Who knows? Slowly but surely everything is being carried away by strangers. Tomorrow my plants will go to a good home (hopefully). I've nurtured these plants,one for as long as 10 years, so I'm sad to see them go.

Who knows what this phase of my life is about. I know one thing for certain. It's about the unknown. Will I get better? Worse?

"What else should our lives be but a continual series of beginnings, of painful settings out into the unknown, pushing off from the edges of consciousness into the mystery of what we have not yet become, except in dreams that blow in from out there bearing the fragrance of islands we have not yet sighted in our waking hours..." (David Malouf, An Imaginary Life, p.135)