The Art of Sleep

Dear friends,

Lyme experts say that getting enough sleep is one of the best things one can do. Yet, finding deep, solid, restful sleep is arguably one of the longest-running, energy-consuming, pull-your-hair-out obstacles for all Lyme sufferers. The search for sleep, then, becomes as much a struggle as finding an appropriate doctor.

I remember three years ago during my first fall with Lyme Disease. I remember lying on my mattress in my studio apartment becoming more anxious as the night grew darker. I would try to find a position to lay my body in order to minimize the pain. As I lay there, I would listen to my breath fall into rhythm with the foggy throbbing in my head. I would think about everything and nothing all at the same time. And I would feel so alone, so helpless.

After about 90 minutes of lying on the mattress in severe pain - often to the point that my entire body would begin to shake - I would finally give in and turn on the TV. I hoped the late night comedy shows would help me either fall asleep or, at least, distract me from the pain. The TV rarely accomplished either. But, somehow, my body would slowly drift off to sleep - three hours after I started the process. Night after night, my body and my mind struggled for control.

Waking up was another battle. Though I tended to wake up at a reasonable time, I would have a difficult time getting out of bed. Up until four or five months ago, I would wake up, take my thyroid medicine, go back to bed, lie there or fall asleep, wake up a half-hour later, eat breakfast, take medicine, and then go back to bed to sleep, email, or watch a movie. At around 11a, I would finally get up and start getting ready for the day either because I had somewhere to be or I just felt rather pathetic for spending so much time in bed.

I can't explain why I would feel this way in the morning. Even if I fell asleep at a reasonable time the night before, in the morning I always felt groggy, achy, and just tired all over. I never felt rested. Of course, life goes on whether I feel good or not, which meant that I often had to go to morning appointments. On these mornings, I woke up rather unhappily; I always felt like I was an injured athlete who continued to play despite the pain. But my body is smart. It would always compensate by making me take naps as soon as I got home from my appointments.

Naps, however, have brought their fair share of hardship. Before having Lyme, I was never a napper. I would tell people that naps were a waste of time because I always had something more important to do. But then I got Lyme and afternoon naps not only became a daily indicator that I had Lyme, but they also became my lifesaver. My afternoon naps often compensated for the lack of restful sleep at night. They provided my body the space to heal - so much so that my body would fall into a deep sleep, often lasting for three hours.

While I loved naps, I equally hated them. I would fall into such a deep sleep that they became almost trance-like, making it nearly impossible to wake up from. At the point of waking, my eyes would open, but no muscle in my body could move. It felt like a heavy cloak laying on top of my body. I would try to lift my head, but the rest of my body would not follow. My breathing would feel very labored. At this time, I would close my eyes and fall back to sleep for 20 minutes. I would then wake up again and seek to slowly regain my senses and muscles. I would then stand up and slowly walk around the room before I did anything that required any degree of concentration. It was an awful, helpless feeling. It was precisely why I rarely allowed anyone to see me that way.

Interrupted sleep can be destructive to getting deep, solid, restful sleep, too. When I was in Seattle last month, I slept at my friends' apartment in the city. I love cities, but sometimes they just be too much. One night, I listened to every automobile that could possibly make noise: police cars, ambulances, garbage trucks. One truck "beep beeped" for so long that I swear it was driving backwards in circles around the block. Kids are also difficult to sleep with. I love my nephew, but when he is sick or when he gets a nightmare, he wakes up and cries. Sometimes he cries for a whole hour. And I hear all of this. Interruptions like this make the Lyme bugs go berserk: I wake up feeling totally achy, anxious, numb, heavy, and tired everywhere. It becomes very difficult to concentrate, too, which interferes with my grad studies or other projects I have. To make matters worse, for every one night of interrupted sleep, it takes at least two days to recover.

Thanks to my acupuncturist, Mia, I have discovered at least three different kinds of ear plugs. After telling her my sleep would become all out of sorts due to these unexpected interruptions, she gave me a small stash of hers. Apparently, she once purchased 30 different kinds for her husband so he could find the perfect ear plug. Who knew so many kinds existed?

In the last few months, I think I have found the perfect sleeping experience: ear plugs, a sleeping mask, and a makeshift head igloo made out of pillows. I fall asleep fast, I sleep deeply, and I experience few interruptions at night. I am waking up rested, ready for the day's events, taking no naps, and feeling energized all day. These are signs that my body is successfully fighting Lyme. The difference between June 2006 and now is night and day.

Literally.

A.

These Bipolar Portland Days

Dear friends,

One thing I love about the Pacific Northwest weather is its propensity to be rather bipolar in nature. The days usually get off to a rough start - dark gray clouds tend to observe the rain bounce against the earth - but by the end of the day, the sun makes its grand entrance and the clouds flee, allowing the plaid trees to burst with color underneath the open, blue sky.

These days bring hope to my spirit. Where once I was broken, now I am patched up. Where once I literally felt the cloak of heaviness in my legs and arms, now I feel lightness and agility. Where once I felt downtrodden, now I feel breezy and colorful. Like these bipolar Portland days, my life is telling a story of redemption and an alternative future.

One example of redemption in my life is that I am currently weaning myself out of some regular treatments. In the last few weeks, I have said 'goodbye' to my massage therapist and chiropractor; later this week, I will be saying 'adios' to my acupuncturist and Ruth, the patient woman who lets me use her Rife machine. In two weeks, I will say 'goodbye' to my counselor. I realized recently that I have been seeing her for nearly three years. That will not be an easy parting.

In fact, saying 'goodbye' is never easy. These health practitioners have contributed to my health in some good way. They have seen me at my worst, though, quite fortunately, they are now seeing me at my best (thus far, at least). They have encouraged, listened, and asked a lot of thoughtful questions mostly for their own understanding. I do not take their relationships lightly. If I could, I would cart them to Seattle.

Yet, sometimes we have to say 'goodbye' in order to open ourselves up to new and greater things. I believe I am well enough to stop these treatments. In fact, I firmly believe I am at 95 percent (or 9.5 out of 10). The remaining five percent is due to the herxes I get from coiling. Now that my days will be free from going to appointments, I can focus on pursuing writing and other projects. I also wish to be free to move to Seattle when it becomes the right time.

The only treatment I will continue to do is the Doug coil machine, which is something I have been doing three or four times per month for the last seven months. I still herx, which means that it's still working (as opposed to the Rife machine (otherwise known as the GB-4000), which hasn't made me herx in several months). There is no doubt in my mind that the Doug coil has been a significant healing tool in my life. However, in the last two or three months, my herxes have steadily become less intense after each time I coil; each time, I am looking for new frequencies that will make me have a herx. I plan to use the coil machine at least until I move to Seattle. If I still feel I need it, I will find someone up there who owns one or I will travel back down to Portland to use Joel's. However, something tells me that I will be saying 'goodbye' to Doug within six months.

Yes, there is the rain. There is the wind. And there is the cold. But there is also the sunshine and the color and the beauty. These bipolar Portland days, then, become my compass, inevitably pointing me in a glorious direction.

A.

Uncertainty

The angel said to him, "Do not be afraid, Zacharias, for your petition has been heard, and your wife Elizabeth will bear you a son, and you will give him the name John. You will have joy and gladness, and many will rejoice at his birth...Zacharias said to the angel, "How will I know this for certain? For I am an old man and my wife is advanced in years." The angel answered and said to him, "I am Gabriel, who stands in the presence of God, and I have been sent to speak to you and to bring you this good news. And behold, you shall be silent and unable to speak until the day when these things take place, because you did not believe my words, which will be fulfilled in their proper time." 

-Luke 1: 13, 14, 18-20

Hi everyone,

I felt good yesterday. I felt rested, alert, present. I was able to attend a meeting in the morning; go to Jazmyne's eighth birthday party in the afternoon (I got a kick out of telling my oldest niece that she is now "4 times 2" - I love that she is old enough to understand the corny joke); and then babysit my youngest niece, Madison, that evening, which really meant that I got to cradle her in my arms while she slept. I really like other people's babies.

And then Sunday arrived. I am sure the sky's heavy, gray cloak is in cahoots with my body's rhythm. Thus far today, I have been feeling lethargic, a little achy, and a little unmotivated. I am waiting for my small headache to explode. I am waiting for my body's inflammation to flare up. And I am waiting for all progress to be lost.

I am afraid. I am afraid that the Lyme won't ever die, that I will always be dependent on others, that I will be alone.

A friend of mine asked me the other day how I could stay with the Church that has deeply hurt me. She mentioned that if the Church had done to her what they have to me, she would have walked away a long time ago. I have a lot of answers to that question, some of which I will flesh out in future posts, but one of the first answers that came to mind was that we have to accept that life is riddled with uncertainty. If life was guaranteed, I most certainly would not have imagined - let alone experienced - a possible arranged marriage, the opportunity to spend a week at a monastery, and certainly not a debilitating illness.

I had the opportunity to spend some time in Seattle last week. My adventure there included hanging out with my beloved friends, Mike and Kristin. I am a big fan of these two. I met them soon after coming to Imago Dei Community Church. Back then they were just dating, and now they are married, living in Seattle, and modeling for me a marriage that is both healthy and flawed. Somehow it works; they prove that love really is a mystery, that marriage really is uncertain. Sigh.

Mike, Kristin, and I were at Happy Hour (a social event that I'm just now catching on to) and we started talking about why so many people flock to a well-known church with a pastor whose presentation is very aggressive and who tends to draw many lines in the sand.

"Because he brings certainty," Mike said. "So many people are looking for answers and to tell them how life is."

Like the parishioners, Zacharias wanted answers. Not only did he want to know if he would have a child, but he also wanted to know how it was going to happen. Without the help of Viagra and fertility drugs, grandpa and grandma certainly were not going to produce a child, right? I find Zacharias' response to Gabriel rather interesting. Just after Gabriel finishes telling Zacharias about all the amazing things John will accomplish in his lifetime (stuff like him being the "forerunner" to Jesus and helping "make ready a people prepared for the Lord" (Luke 1:15-17)), Zacharias is like, "But you haven't told me how my wife and I could do that?" So then, Gabriel is like, "Um, dude, if I'm telling you what John is going to accomplish, we can assume the problem of you and Elizabeth having a baby will be a moot point by then."

I chide Zacharias for his unbelief, but how many times do I fail to believe? How many times this week have I told somebody how skeptical I am that I'm really in my last six months of treatment? I want to know when I will feel 100 percent and how I will provide for myself. I want to know that today will be a good day. I want to know that my move to Seattle is not going to go bust. And I want to know that everything will turn out favorably. But I don't know. I can't tell you how I will feel an hour from now. I can't tell you if I will be able to work full-time anytime soon. I can't tell you if I will always believe.

Yet, even if I could tell you that I am 100 percent healthy, I would be leaving out most of the story. For the real story is not that two elderly people could make a baby or that some 27-year-old woman could get over Lyme. No, the real story is that God brings out something great in each one of us. From before we were born, He has been writing a beautifully complicated story in us, through us, that makes Himself known and that shines the light on a righteous and holy God who recaptures all of us for Himself.

Inherently, our stories will include uncertainty. God could very well decide tomorrow that I will meet a dinosaur or take a long walk on a beach. I don't know. All I know is that I would rather be in a place of not knowing - of trusting Him - than in a place where I can be certain of my future. Because if I were certain, the only place I could be is six feet under.

A.

Physicology/33

Hi everyone,

For the last seven days, my body has been in waiting. Specifically, it has been waiting for any sign of symptoms. Each day, my eyes dart back and forth, my muscles brace for the slippery slope, my mind remains on alert, ready to shut off at the first sign.

Yet, nothing. Only stillness.

No joint pain, no afternoon dip of energy, no inflammation. I wake up rested (even when I don't get enough sleep), I stay alert and engaged all day, and my mood remains steady. Yesterday, I woke up at the awful hour of 5:30a to go to a conference in Seattle. After a full day of workshops, networking, and engagement, I felt pretty tired by the time I got back to my friend's home for dinner - a normal response that anyone would feel.

This is the point when I really want to swear in jubilation, but I am saving those words for my own head. In reality, I'm bubbling over with happiness and knee-slapping laughter. I'm dumbfounded and surprised. My body is actually working; it's healing itself. And I can't believe I'm here: here in this space, living in this moment, seeing the fruits of my labor, experiencing the depth of God's grace living in and through me.

I'm here. Not back there. Not ahead over there. Just here.

A.

Brink

Dear friends,

I had barely walked in the door.

"Oh, Anna!" the seamstress shouted in her thick Russian accent. "Your pants are just beautiful. Many pants are just awful to press, but yours - oh! - they were marvelous: so smooth, no wrinkles."

Pleasantly surprised by her greeting, I smiled wide.

"Thank you," I said. "Would you hate me if I folded up the pants so I can carry them in my backpack?"

"Not at all. I will fold them for you. See like this." She folded them along the seam. "Don't worry. Your pants won't have any wrinkles. They are just gorgeous."

I smiled when she reiterated her feelings about the pants.

In the past three years, my seamstress has altered several jeans for me, though this was the first time I asked her to alter work pants. Given my spotty work history in the last 41 months, this is truly a remarkable time. As I walked out of the seamstress' office, I almost felt the need to take a moment of silence, to mark the occasion with a few words, to stop and remember this feeling. I wanted to remember the feeling of being on the brink between the old and the new, the dying and the living, and the uncertainty and the possibility. I wanted to remember where I have come from and I wanted to remember how much toil it has taken to get me where I am going.

Last night, I tried on my two new work outfits. After pairing one pair of pants with a pink undershirt and a brown, sleeveless sweater, I stepped in front of the mirror. I cocked my head to the right. My hands palmed my figure. I turned to the side. I checked out my curves. I turned towards the mirror again. I smiled. And then I moved on.

I had almost forgotten what it was like.

A.

Brightness

Dear friends,

I don't feel depressed.
I don't feel glazed over.
I don't feel empty.
I don't feel behind.
I don't feel lost.
I don't feel cracked.
I don't feel like I am bleeding.

I do feel patched up.
I feel lifted.
I feel full.
I feel hopeful.
And I feel fabulous.

A.

The Answer to the Question

Hi everyone,

Last week, I invited my readers to ask any question that you might be wondering about. Perhaps you have a question related to Lyme Disease. Let me hear it. Perhaps you have a question about what it's like to live with a chronic illness. I like talking about that. Or perhaps you have a personal question for me. If I can write about my menstrual cycle, then I can answer just about anything. Email me or write your questions in the comments section below.

Today I am answering the first question, which was submitted by Bethany: What are two things you hope to see in your lifetime?

When I first read that question, I really wanted to respond with some existential answer - one that would make you go, "Hmm." I held back, though, which was probably best since Bethany was probably looking for an answer about some tangible things I hope for. After an appropriate amount of thought, I will share with you the two tangible things I hope to see in my lifetime (out of a list of about 50):

1. I hope to publish a book that would be remembered even after my death, that would add to the reader's life, and that would be enjoyable to write.
2. I hope to own a home - a modest one - with a backyard large enough to have a one-bedroom apartment. My plan is to invite someone living with a chronic illness to come stay in this apartment rent-free. The intention is to give this person the space (physically, financially, and emotionally) to fully engage in the recovery process in order to become healthy enough to be able to work and live on his or her own. (This is also my opportunity to "give back" in the same way I have personally benefited.) Since we're on the topic of my future backyard, I would also like the space to have a small studio that holds a sauna, a Doug coil machine, and a few other recovery tools. And one more thing: I would like my backyard to have a small altar and nave to invite people into worship and a brief, spiritual retreat.

Not too much to ask, right?

A.

An Early Thanksgiving

Dear friends,

Today I am grateful that I can walk. I am grateful that the inflammation behind my knees rarely flares up and never slows my pace. I am grateful that I can walk just as fast as anyone else. I am grateful that I don't get tired from walking anymore. And I am grateful for getting the chance to walk every day.

Today I am grateful that I can walk. What are you grateful for?

A.

Physicology/32

Hi everyone,

This series is usually reserved to tell you how I am physically feeling, but I confess that I am having a difficult time writing this one today. I always want to tell the truth, and being fully human, I always prefer that truth to be a statement of good health. The problem with writing this post is not that I don't think my health is good. I actually think it's pretty good: I have a ton of stamina, I am sleeping well, my symptoms are at an all-time low, and my herxes are short.

Rather, the problem with writing this post is that I am having trouble figuring out what "well" really is. What is normal? What is typically human? I have been pondering this question lately, and in true form, have recently found myself in a few situations that shine some light on these questions.

Two weekends ago, I participated in a retreat for the Second Stories executive team and a few others. (I am one of those "few others.") Second Stories is the non-profit organization my former boss, Clark Blakeman, initiated at the beginning of this year. In the past three years, I have had the privilege of seeing his dream grow into reality. He invited me to become his assistant of sorts last year, which I declined. He invited me again this past August - except this time it was to write articles only - and I accepted. I prefer that my role be fairly limited (which will remain so due to, among many other reasons, my expected move to Seattle), but I also enjoy contributing to the branding and organizational ideas being tossed around.

So, I was invited to this retreat, though I was hesitant at first. I don't take travel lightly anymore.

"Will there be pillow talk? Because I'm not doing pillow talk," I told Clark.

His answers to all my questions calmed me down, so I went. Friday night, I spent three hours driving to the Umpqua River with three others in intense but satisfying conversation, then another few hours in a meeting before we all went to bed. Saturday morning, once I woke up at 8a, I spent the next nine hours in the presence of the rest of the staff, mostly in meetings, stopping only to eat and to take short breaks. By 5:30p, I had a flaring headache. I could barely concentrate, I stopped caring about the conversation, and all I wanted to do was close my eyes. Soon, I couldn't stand the pain anymore, so I quietly stood up in the middle of the meeting and walked upstairs into bed to lie down. Is this the Lyme, or is this just my introvertedness barking at me? I don't know. I do know that less than a half-hour later, I felt better and was able to rejoin the group for dinner, games, and conversation for the rest of the night.

The next day, in preparation to head back to Portland, I volunteered to make all eleven beds with Clark. As we were doing so, Clark commented, "So, Anna, it seems like you have more energy these days."

My hand dropped the sheet onto the mattress. I looked up. I suddenly became conscious of the very task I was doing, that I had readily volunteered for it, that something so simple as sheeting a mattress wasn't taxiing, and that I didn't think twice about it.

"Yeah, I suppose I do..." I said, as my voice trailed off.

Clark's wife, Cathy, soon joined the conversation, and I went on to describe to both of them how, in fact, I really did have a lot more energy these days. Is this a sign of wellness?

******

In the past five days, I have visited with five different people living with a chronic illness. In four of these conversations, I specifically asked them to describe their support system. All noted that it was nearly non-existent or, at best, challenging to find a nurturing, loving, understanding circle of support. Based on these four recent conversations, in addition to dozens of conversations with chronically ill people in the last three years, I would argue that the lack of support is the most significant factor contributing to chronic illness.

You're probably thinking that this is a circular argument. How can chronic illness be blamed on a chronically ill person's low support system? This is a great question. First, I will define the support system. My working definition is that a support system is any person who has or can have direct influence on another person's life. Often times, the support system will live geographically close, though it doesn't have to be. A particularly close sibling who lives on the opposite side of the country can have a stronger influence on a life than the next-door neighbor.

This definition allows medical professionals to be in a person's support system. Medical doctors, nurses, naturopaths, chiropractors, phlebotomists, counselors - anyone you come into contact with in the health care industry can potentially be included in your circle of support. But what if you cannot find a doctor to believe you? What if you have been told it's "all in your head?" What if you can't see a particular doctor because your insurance company refuses to pay for it?

And now what if your close friends and family tell you that if your illness cannot or will not be given a name and treated by the doctor, then you must be lazy or faking it? What if, in spite of the lack of a doctor's note, your friends and family believe you, but they have no idea what to do next? Illness is a scary thing in its own right: so many things go wrong, so many things become out of one's control, and time only seems to work against you.

I have a friend whom I will call Sharon. We have known each other for a good number of years, and if I had to choose one person with whom to take with me to a deserted island, she is it. So, you can imagine my severe devastation when Sharon emotionally and physically disappeared after I first became ill. I can't tell you what was going through her head, but I can tell you that I wished for her support. I wished to be validated, to be loved, to be accepted. I didn't want her to be my chauffeur or personal nurse. Rather, I wanted her to be my friend, to treat me like the Anna she knew, to watch a movie with me as I lay paralyzed on the couch. I can't tell you whether or not Sharon's disappearance had a negative effect on my physical health, but I am sure that her support would have given me an extra boost of confidence to pursue the solutions for my physical health. Fortunately, my friendship with Sharon has since been restored, even though it took at least a year for our relationship to get back to its previous level of intimacy and trust.

When my health suddenly and quickly spiraled downward, the last thing I needed was for my circle of support to do the same. The only thing with which I can identify my declining health and subsequent recovery process is the many years I spent in severe grief and process of the abuse I experienced as a child. I describe that particular grieving process in the image that came to mind almost daily during that rough period:

The image is of me one body length from the bottom of a deep, deep pit, hanging onto the wall by my fingertips, pressing my body into the dirty, rough walls, the faint sun lighting the bottom. I hung onto the walls to keep from touching bottom. I looked up often, but I never saw anyone help me. I was alone, dirty, cold. My only hope was that of another image: the gentle Peacemaker stooping down, carefully lifting me out of earth's dungeon towards a greater wholeness. Once I got to the top, I discovered there were always people around, some at the top of the pit, some leaning down to help, and others hanging onto the walls beside me.

Since June 6, 2006, when my symptoms made their grand appearance, my support system has ebbed and flowed, but I have certainly had no reason to complain. I realize that the level of support in my life is, on average, much higher than other chronically ill people. For all the pain among us, my parents are the two strongest supporters in my life. (Nobody can trump the support of money...) OK, it's not just that: Mom and Dad are pretty great people and have always encouraged me to achieve excellence in all I do and am.

Another major support system in my life is my church, Imago Dei Community. When I first got sick, specific people from the church stepped in to help: Kristine, Clark, Heather, and Kevin are the first people to come to mind. I know there were many others who prayed for or assisted me in some way.

And finally, there are my friends: church friends, Lyme friends, grad school friends, Northwestern friends, roommate friends, Facebook friends (who never stop reminding me about how cryptic my statuses can be), friends of friends who have become my friends, and the future friends I am bound to meet in all the adventures yet to be had. These people bring goodness and life to my story; they inform me in such a way that cannot be independently created.

The level of support, then, has everything to do with chronic illness. When I am in the presence of others, it is impossible to see myself as chronically ill, as that language implies a deteroriating, backsliding kind of life. When I am with people - when they add to my life and I add to theirs - we can only be moving towards a life of wholeness, health, and beauty. The strength of my support system, then, must be a sign of wellness.

A.

Burning Toes

Dear friends,

Surely no pleasant thing can come from burning boobs, but burning toes is another story. Let me explain.

I disliked acupuncture until this past summer. I had tried two or three times before, but the procedure never stuck for me. Acupuncture never felt relaxing, and it didn't have any obvious positive health effects for me. For these reasons, I always preferred massage. At the beginning of the summer, my coiling friends, Joel and Lisa, began to encourage me to try acupuncture again. To persuade me, Joel said that he always leaves acupuncture "feeling all good and relaxed inside." He grinned, giggled, and hugged himself as he said this. I furrowed my brow in response. Despite that I could not relate to these warm, fuzzy, and foreign feelings, I decided to try acupuncture one more time. I fully expected to be disappointed (and proven right) again.

That was more than three months ago. And I have been proven wrong yet again. Now, I faithfully go to acupuncture treatment once a week since early July. I found an acupuncturist simply because I wanted to go to somebody in my neighbhorhood (I was tired traveling everywhere else for treatment) and I wanted an acupuncturist who takes insurance. Mia raised her hand, and she has been faithfully treating me ever since. Mia is not a Lyme-literate practitioner, but she is a willing student. (Can we coin a new term for people like her? Perhaps "Lyme-literate trainee"?) Whatever we call people like Mia, we need more people like her. She listens to me explain Lyme and my varying symptoms week to week, asks a lot of great, probing questions, read Bryan Rosner's Lyme Disease and Rife Machines book, hung a very large "Under Our Skin" poster in her front window, and even called my doctor to ask him questions. Without realizing it, our appointments have become one of the few "mile markers" in my life: each week, I have someone with whom to process my improvement; each appointment, then, becomes a mini-worship session.

About a month ago, Mia began ending the appointments by rubbing a linament on my feet and hands, particularly to treat the tingling I was feeling on the tips of my toes. She told me the linament is a bunch of herbs that treat chronic pain. Within a few hours of application, my feet began to tingle, except this time the tingling was not located on the tips of my toes. The tingling was coming from somewhere deeper, it was broader, and it was abnormally pleasant. The tingling turned to burning some time later and lasted through the next day. My toes felt warm, like they were smoldering, and I imagined all the bugs were being burned off. It felt so good - so good that I didn't want it to stop. Because when my body feels so painful for so long, I will accept almost anything that elicits good and pleasant feelings.

I purchased some of my own to use during the week, but thus far, even after a few weeks of applying it on my feet, I don't get the same feeling as when Mia applies it. I will keep trying, though, because if I can set my boobs on fire, it can't be too difficult to do the same to my toes.

A.

The Imago Dei

Dear friends,

The following is an email my friend sent to me after watching "Under Our Skin" at the Hollywood Theatre:

I loved "Under Our Skin." It was such an eye opener, and I think a friend of mine has it - he was diagnosed with Lou Gehrigs Disease (ALS). When I was watching it, seeing what those people went through, I keep thinking about when I met you, and how tired you were and how you told me you were paralyzed. I can't believe that doctors and insurance companies say it's not chronic. It enrages me. And that's understating it. I wonder when we will see a turn around? I was excited to see the breakthrough that doctor made - maybe now they will have to take it seriously.

So one thing that bothered me immensely: A couple of times I posted up on Facebook that I was going to see this documentary. I was mocked/made fun of, told it was gross, that they had to wash their hair. I could not believe the reaction my friends had to this. It struck home that no one really knows about this and it is everywhere. If they get it, they won't know what hit them or where to begin to look. And they could die because of it. Why is this disease not talked about? Wait. I know. Insurance companies. I am so offended that they would cover this up, that they would take away doctors licenses, that they would take away people's insurance. Now many people will get it and not know what they have for too long. It's scary.

For many reasons, I am intrigued by my friend's response. I am intrigued by her empathy, her frustration, and her search for the answer to the question, "Why?" People like my friend make me smile because they are an extra source of validation.

Similarly, I am intrigued by the responses of her friends. To be honest, I had read all her friend's comments on Facebook; I really wanted to respond to these people with something real clever like, "I would like to wipe my germs all over you" or "I didn't realize going to a movie was now so uncool." Fortunately, I kept my thoughts to myself.

Secretly, though, it is difficult to read or hear messages like this. I know that I am not detestable (far from it, actually), but the message still hurts. To read that people won't go to a movie because it's too gross is not only illogical, but also ignorant. I can't help think about how we have treated lepers, those with HIV/AIDS, the abused and neglected, the GLBT community, and the list goes on and on. We (including myself) are guilty for the way we treat people who are "different" from us. I say "different" because they may look different from us on the outside (i.e., different neighborhood, class, race, education, health), but on the inside, we are really quite similar.

Several years ago, I was doing an internship at a pro bono legal clinic in Chicago that represented people who needed an order of protection (also known as a restraining order). My job was to interview the applicants each morning, type out all of the paperwork, and do anything else to prepare the client for court in the afternoon. A good part of my job was to get the story (or stories) that compels the judge to grant our clients an order of protection. When women come to you saying their partner choked them, threatened to kill them, and kidnapped their children, this task becomes fairly easy to do.

Except when I receive resistance. One morning, I interviewed a woman in her 20s who had one child with her. She was seeking an order of protection against her romantic partner. This woman was also black. The interview seemed to be going well at first - she explained what events led her to seek an order of protection and gave me the name and the address of the defendant. But then when I began to ask her for more information, mostly to explain gaps in her story (who shares everything at first anyway?) or to answer questions on the paperwork, the woman became highly defensive. She refused to give me information and folded her arms. I tried to explain to her that the information was necessary to have a good case. She then lashed out:

"Who are you to tell me what happened? You wouldn't understand anyway."

I'm kind of embarrassed to say this (and I have never done this before or since in such a setting), but I straightened my back, looked at her straight in the eyes, and raised my voice, "Actually, I do understand! I was abused for seven years as a child and it was the most difficult thing I have ever experienced. Maybe I am here to help you because I understand what you are going through. Now please answer my questions."

The woman's eyes were big and her mouth agape. We soon finished the interview; later on, she received her order of protection.

I think the difference between my friend and her Facebook "friends" is empathy. When you know a person - like really know who that person is, know her story, know what makes her laugh, know what makes her hurt - it is way more difficult to ignore the imago dei, the image of God living in her.

But what's even more difficult is to ignore your own - the image of God living within you.

In response to all of those who have questions about Lyme Disease, about living with the illness, or anything else about me, my community, or experiences, I invite you to use the comment section to ask me questions. As a friend once said, people are given permission to be dumb. Thus, nothing is off limits. I will do my best to answer your questions here.

A.

The Joy of Washing Dishes

Hi everyone,

Tonight I received with joy the duty of washing the dishes. I eagerly washed each dirty dish, scrubbed down the counters, cleaned the sink, and even counseled myself (in my head) through some of today's events. While I do this chore three nights a week in my household, this particular time was different. Tonight wasn't about enjoying dishwashing duty; the chore has always been one of my most favorite, particularly when given the choice between that and, say, cleaning the toilet. Tonight's dishes weren't particularly light, either; washing the dishes took me as long as any other night. What was different about tonight was that I found myself drawn to the chore, to the mundane.

Ever since I stopped working, moved into my sister's house, and started serious recovery 16 months ago, I have noticed that some of the most mundane tasks can be absurdly taxiing: making dinner, going grocery shopping, paying bills, doing chores. Going to and from treatments - not to mention experiencing the actual treatment and its aftermath - ate up a lot of my energy. And for good reason: I lived in a fog. I spent so much energy doing whatever made me feel better (i.e., lying in bed, rifing, and taking medicine), that simple tasks like washing the dishes felt like going for a five-mile run. Not only did I have to go the distance, but I had to psych myself up to do it and then go lie down for a long while to recover all my spent energy. What's more, I found that I could preserve energy by ceasing to think and feel while accomplishing the task. I have realized only lately that I discovered a legitimate, yet dangerous excuse to shut down. Acknowledging my spirit, then, let alone counseling it, was out of the question.

Fortunately, my health is long beyond that point. The fog is nearly non-existent, the energy mostly stays around, and the joyful willingness to do chores, such as washing dishes, is returning. More than ever, I can physically and psychologically multi-task, I can process my feelings, and I can remain hopeful for the next day. This is a new sign of independence.

A.

Confidence/Five

[This is the fifth, and last, installment on the theme of confidence. Stay with me; the story will unfold into some pleasant surprises.]

Dear friends,

At the end of our first rendezvous, Paul asked me, "Where do we go from here?" Within a few months' time, we weren't going anywhere, but I was. I am.

******

As I was perusing the Wordstock 2009 festival guide yesterday, I noticed there would be a group of panelists who will discuss "how their community shapes their work." I pondered that for a few moments and then began to reflect on the community around me that shapes my writing.

I have always said that I cannot be a writer without an audience, but I should also add that I cannot be a writer without a community to inform who I am. Many of my stories are inspired by conversations and experiences I have shared with others. Sometimes the idea is the specific conversation we are having, other times the conversation initiates personal revelations of specific themes and threads in my life. Yet, no matter how I get there, I cannot get there alone.

Several years ago, Donald Miller, author of Blue Like Jazz and, most recently, A Million Miles in a Thousand Years, said that he tries to remain kind to the people he writes about in his stories. This lesson has stayed with me ever since. So, too, my aim is to be kind to the people I write about. I choose to do this simply because they are my community. Unlike the illness or my shifting feelings on any given day, these people stay with me forever. Their contributions to my life, the words they speak into my heart, the time they gift to me - all profoundly impact my life. I am a better person because of these people: I am happier, freer, wiser, and humbler because my community has chosen to love me where I am.

******

I have visited Seattle seven times since I first visited my doctor in October 2008, and each time, the sky has shed its gray jacket to allow the sun to come out and play. I am not naive - the weather in Portland and Seattle is quite similar - but still, I have found all my visits to Seattle to be inspiring, inviting, hopeful.

******

Last week, my doctor's receptionist said that I look like Maggie Gyllenhaal. I smiled big. As one of the most consistent actresses around today, she is intelligent, beautiful, and a bit snarky. Yes, please.

******

Where do I go from here? Seattle. I am moving to Seattle. The possibility surfaced somewhere in these last few months, though I suspect the possibility has been unknowingly simmering since last October.

The move is a choice; the decision was made entirely in freedom. I am not fleeing Portland, rather, I am pursuing Seattle and the opportunities that it holds. In addition to my graduate studies (which I can do from anywhere), I will be pursuing freelance writing and a bit of consulting in the Organizational Development field. I find I am the happiest when I am writing, in the presence of others, evaluating systems, and doing project-based work.

I am moving to Seattle because I enjoy the thrill and the mystery of exploration. I have many more adventures to take, possibilities to pursue, opportunities to experience God's beauty, and people to meet. Last fall, I wondered aloud at what time my circle of community would grow again. I think now is about that time. It is time for a fresh start, for something new.

This is the journey of confidence.

A.
P.S. I am aiming to move sometime around the beginning of January, give or take. No worries, I will continue blogging about my experiences living in Seattle. But my Washington residency status won't keep me from visiting Portland (since my family lives here, my siblings keep popping out babies, and I will maintain a few projects from here). Who knows? Maybe you will see me at Imago Dei or sitting in a coffee shop or out exploring the city. I plan to remain in touch with my Portland community - with you. 

And now that I am officially looking for project/contract work in and around Seattle, know of anything? :)