Taste, See, Feel

Hi everyone,


I am beginning to realize that art is more than just a pretty picture mounted on the wall or some words inked onto paper. If art were really reduced to the mediums in which they were expressed, then we would praise the television box every time we watched our favorite TV show. But we don't praise the box because that would be silly. Instead, we praise the show's creators, actors, writers, and producers. We praise those who tirelessly and fearlessly tapped into their creative spirits so that others could taste what they taste, see what they see, feel what they feel.

The director, producers, writers, and cameramen who contributed to the creation of "Under Our Skin" did just that. They tapped into the lives of real people living with Lyme, real people afraid, real people broken. Thank you for pursuing and sharing this story with us.

The first thing I see in Aaron Courter is his love and enthusiasm for photography, for telling a story, for capturing slivers of history. He produces some of the most beautiful, creative work I've seen in a long time; he has a way of bringing out the complicated beauty in all his subjects. I think he gets paid far too little for the time and work he puts in. Thank you for keeping your rate "too low" anyway. You blessed many.

By opening their doors not only to the screening but also to the panel, the Hollywood Theatre validated an entire group of people. Richard, Ellen, Justen, Jason, and the rest of the staff: Thank you for your eager support and willingness to take a risk on "Under Our Skin." I'm glad to hear we didn't disappoint last weekend. If you live in Portland, please show your support by patronizing this theatre.

******

Pictures are now up at www.aaroncphotography.com/underourskin/. If you would like any photos (of yourselves or the event), please email the fantabulous photographer, Aaron Courter, at ac@aaroncourter.com. Each photo is labeled with a number. If you email him, please tell him the specific album and numbers.

Also, if you're looking for web-friendly pictures, Aaron has made these pictures downloadable (just right-click the photo). One more thing, we have full rights to these pictures, so feel free to use them however you wish. Aaron is available to assist you with prints if you would like (for a fee). Please email him for more information.

Answers to the questions we couldn't get to during the panel portion of the event will come next week. 

A.

Confidence/Four

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

Dear friends,

"Where do we go from here?" Paul asked me.

"I don't know," I said. I wanted to hear what he had to say, plus I was still digesting the last 14 hours. (I'm slow like that.)

"You will be back in two months, right?"

"Yes."

"Well, I would like to take you out to lunch then and, in the meantime, we can talk on the phone."

"I'd like that."

Paul hugged me goodbye. My heart felt blitzed with hope.

******

Two months later, I found myself again walking next to Paul in Seattle. The air was warm and the sun kissed the top of our heads. This time, we were walking in a neighborhood dotted with mansions.

"What would you do if you lived in one of these houses?" Paul asks.

"I wouldn't live in it," I said. "I prefer a tiny house. Why, what would you do?"

"I'd live in it," he deadpanned.

I laughed.

I realized I missed this; I missed him. But the mood was remarkably different compared to our rendezvous two months ago. It probably had something to do with the fact that I had hardly heard from him since July.

He began.

"So, this is what happened. Summer came, I got busy, and I let things slip by the wayside. I have also figured out that I neither want to nor should be in a relationship right now."

That was quick and direct, I thought to myself. It felt good to know.

"Thank you for telling me," I responded. "That's all I wanted to know."

I turned to look at Paul.

"I mean, you never followed through! You never communicated with me! And that was hurtful."

"I know," Paul said. "You shouldn't have to come all the way to Seattle to hear this. I should have communicated with you, and I take full responsibility."

Paul went on to share more of his life with me: why he knows he can't be in a relationship, what he's struggling with, how he's coping. I agreed with his decision not to be in a relationship. I also knew that I couldn't be in a relationship with someone who is at the place he is in.

We walked steadily side-by-side. I felt equally disappointed, sad, relieved, and...free. Specifically, I felt free to share with him the following:

"Paul, can I tell you something?"

"Anything."

"The time we shared together - that was real. So, thank you for having a profound impact on my life."

"Would you care to elaborate?" Paul asked.

"Sure." I paused for a few moments. I listened to our soles hitting the pavement. "You don't know this, but I had this crazy month last March and, among other things, one of the things that happened was that I essentially got a marriage proposal. By the end of the month, not only did I know that I didn't want that, but I also knew that I didn't want to be in a relationship. I knew so because I wanted a Togo sofa more than a relationship."

"A what?" Paul asked.

"A Togo sofa. You should see this sofa! They have a showroom in Seattle. It's so beautiful and ergonomic and - "

"- A couch?!"

We laughed.

"No, but really," I said, "the sofa is just a symbol of my independence. I knew that my main priority was to become healthy, start working, and get an apartment, so I had pretty much put dating out of my mind, which I was happy with.

"And then I met you. I don't think I have ever enjoyed myself with anyone as much as I did with you. You were different. And for the first time in my life, I wanted to spend time with someone - with you."

"Wow, thank you," Paul responded. "I could reciprocate, but what I would say would pale in comparison."

"Would you please go ahead and try?" I encouraged him.

"Thank you for giving me the permission to ask you out; I had never asked out a girl before. And thank you for saying yes."

I smiled.

"It was easy to say yes. Thank you for asking."

A little while later, as we stood in front of Mike and Kristin's apartment, Paul hugged me goodbye again. My heart still felt blitzed with hope.

******

There are no chance meetings, no flukes, no coincidences. Every page in my story holds meaning. Sometimes I will grasp the meaning, sometimes I will not. But this I do know: I have never felt confident - or free - enough to tell a man what I had just told Paul. To tell him how he hurt me, to tell him how he added to my life, to laugh with him despite the painful conversation we were having - I know that didn't happen during my last break-up.

More confidence is becoming.

A.

How I Know

Dear friends,

In the wake of my doctor's pronouncement last week, a few people have asked me how I will know when I am 100 percent healthy. This is a great question. Though the answer to this question can be a bit nebulous, the following are some standard benchmarks:

• I must experience no symptoms for two months.
• I must pass a CD-57 blood test. 
• I must "pass" a Western blot IgG and IgM test. ("Pass" is in quotes because the results rely more on interpretation.)

But I don't have to wait until the end to know what I already know. Here are the indicators that show I am becoming healthy:

• I have gotten my monthly menstrual cycle four months in a row now. I have never had a regular, natural monthly cycle before - and never been so happy to get my period.
  
• I am getting colds. Early this month, I got a cold that lasted for more than a week. One theory says that if my body is fighting a cold, then it finally has the capacity to deal with something other than Lyme.
• My herxes are getting shorter. I "bounce back" from rifing and other stressful activities much faster; sometimes I don't herx at all.
• I rarely feel depressed or sad about my plight. My mood is upbeat even when I feel tired and achy.
• I have consistent stamina throughout my days, weeks, and even months.
• Though I still don't like spending money on medicine and treatments, I don't resent it anymore.
• My dreams and "life after Lyme" are inching closer to fruition. 
• Lyme is just one chapter of many chapters in my story.

I know mostly because my gut tells me so.

A.

Under Our Skin to Screen in Portland/Again

Hi everyone,

The Hollywood Theatre reports that a total of 330 people attended four showings of "Under Our Skin" this past weekend, which ended up being the second-most popular film of the weekend. The successful turnout has compelled the Hollywood Theatre to extend the run next week. If you were unable to make the showings this weekend, now is your chance. "Under Our Skin" will play on the following dates and times:

• Monday, October 5, 9:30p
• Tuesday, October 6, 7:30p
• Wednesday, October 7, 7:30p
• Thursday, October 8, 9:30p

The Hollywood Theatre is located at 4122 NE Sandy Blvd, Portland, OR 97212. For added effect, go by bike or bus. If by TriMet, take bus lines 12, 75, or 77, or MAX blue, green, or red lines. Check out the Hollywood Theatre's website for more information, including how to purchase tickets online.

Like I wrote yesterday, pictures and more answers to your questions will come soon.

A.

Confidence/Three

[This is the third installment on the theme of confidence. Stay with me; the story will unfold into some pleasant surprises.]  
 
Dear friends,

My July doctor's appointment was scheduled on the same day as my friend Mike's birthday. Since I stay with him and his wife each time I visit Seattle, I knew I was going to attend the party, even though I rarely go out after dark and had not been in a bar in a long while. The humorous thing about the timing of Mike's party was that I had just written the day before that I really didn't understand how two people could like each other so much, therefore, spend so much time together. Here is where my question was really coming from: first, living with Lyme gives me a handicap; second, I had never experienced what it was like to want to be with someone so much. As we drove to the party, Mike and Kristin gave me their (wise) feedback on the topic. I remember them saying something about just "knowing" who the right person is for you and probably some other great things, but since I had no reference point, I received it all in a cloud of skepticism.

Not only was I thinking about the mystery of relationship, I was also thinking, I don't know anybody here besides Mike and Kristin. I hope I get through tonight. It would be nice to just have a conversation with someone.

And then within God's infinite humor and wisdom, I met Paul.

I met him a few minutes after arriving to the party. Kristin introduced us and then she and I went to play pool, which is a fun distraction when you only know two people at a party.

A few minutes later, Paul walked over to the pool table. Somewhere in between my turns, while a group of us ravaged the food on the table, Paul looked me in the eye and asked, "So, Anna, tell me about your passion. I don't want to hear what you do for work, I want to hear what makes you most excited."

I smiled really big. I blushed, too.

"Well, it's your lucky day because I don't work," I said. I went on to tell him that I am in grad school (which doesn't feel like work) and that I am in recovery from a long illness. "I play a lot mostly," I told him. I turned around to the pool table to take my turn. He playfully grabbed the end of my cue. I played along.

Once our game was over, Paul was asked to play a game with a group of guys. "In between my turns," he said, "can I ask you a few questions about your journey?"

Paul's interest is not uncommon. A lot of people are intrigued by my life, so I didn't think anything of it.

"Sure, anything. What's your first question?"

"Wait right here." Paul turned around to the nearest guy, handed him his cue, and told the guy to play for him. The pool game hadn't even started.

We walked over to a table, where we sat for a long while talking. The conversation was easy, fun, and inviting. It was apparent to me that he was smart, funny, outgoing. He wasn't intimidated by me or the illness. In fact, he was more intrigued than anything. At one point, Paul asked me how I was doing.

I was confused.

"Huh?" I asked.

"You know, how are you doing now that it's getting kind of late for you?"

The thought hadn't crossed my mind. "Oh, thanks for asking. What time is it?"

"9 p.m."

"I'm doing great! But I am feeling warm."

"Do you want to go outside and take a walk?"

"Yes, I'd love that."

South Lake Union was directly across the street from the bar. The air was warm and the city lights glowed. The evening felt like it was made for us to meet. We talked and walked along the lake's edge. I can't remember laughing so much as I did that night. I felt completely at ease in Paul's presence. We realized that we lost track of time when Paul received a text message from Kristin saying, "Mike and I are in the car. Where are you and Anna?" We had closed out the evening.

We began to walk back to the bar.

"I have two questions for you," Paul said.

"OK."

"The first question I have is, can I have your number?"

"Of course," I said. "Thanks for asking."

"The second question is, can I take you out to coffee tomorrow morning?"

"Absolutely."

The following morning, our conversation picked right back up where it left off. It felt easy, fun, and natural. I remember thinking that this guy matches me. In fact, in some ways, he bested me. I knew I had never felt that way before.

Just before Paul had to leave for work, he asked, "So, where do we go from here?"

A.

Success!

Hi everyone,

Yesterday's opening event of "Under Our Skin" was a complete success. Early reports suggest about 275 people attended. The panel went well - it was succinct and informative. People said that was the best part of the afternoon. I wish we could have answered everybody's questions, so one thing I am going to do later this week (hopefully) is to publish answers to a few of those questions (or, if I do not have the answer, ask someone else to answer them). In addition, I will also post some pictures and provide the link to the slide show.

By far, the best thing the event did was to connect Lyme sufferers together. There was the couple from Grants Pass, Oregon, who mentioned they had never been around so many Lyme people before. They mentioned they have been in treatment limbo ever since their Lyme doctor retired.

Then there was the young man who is grappling with his inability to provide for himself. He looked so tired and hopeless. I just wanted to give him a big hug.

And then there was the young woman who was wrestling with how she was supposed to pay for any of the treatment.

"Is there a foundation that helps people out financially?" she asked.

"If there was, it would be tapped out by now," I said.

Finally, there was the woman who attended on behalf of her cousin who has Lyme. The woman began to cry as she told me how devastating it was to watch her family member lose her job and spend her days on the couch. That's the kind of love I like to see.

So many people and so many stories of pain, suffering, hopelessness, confusion, despair. Yet, when we share and collaborate and exchange stories - when we show up to events like these - these stories start to become full of hope and possibility, too. This is the beginning of something new.

A.

Confidence/Two

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

Hi everyone,

I know that I am in the right place when I feel comfortable enough to get lost.

The other day, while I was in Seattle, I had to go to the bank. After looking up the closest branch location online and then memorizing the directions (which called for making just two turns), I got into my car to make the three-minute trip. Minutes later, I found myself circling the block looking for the bank in the middle of a warehouse district. Either I missed the bank entirely or it really doesn't exist. Either way, I made an instant decision: to go find another branch (without Internet access or a phone number). It was just me and my directional prowess.

OK, I have to boast a little bit: I am really good at directions. How good? Sometimes I tell people how to travel to their own homes. (Much to my dismay, some people do not receive this well.) All I need is to go to a location once and I will remember it forever. Most likely, I will figure out how to get to the same place in multiple ways.

I blame my strong intuition: I tend to make assumptions about where a particular road will go and which streets it will intersect. Sometimes I study maps for broad knowledge of a city, but I rarely retrieve any specific information.

My amazing directional gifts, however, do not necessarily help me when I am trying to find a specific location. For all I knew, I was going in the opposite direction of all of the Seattle bank branches. (It's sort of like the feeling when you pass through Centralia, Washington, and a billboard tells you that the next Burgerville is 25,000 miles away. You take a moment to think, Do I really want to do this?) So as I set out to find the bank, I felt a bit uneasy, a bit uncertain, and even a bit lost.

I chose to stay on main arterial roads. I figured shooting off onto side streets would only prolong my journey and make me more frustrated. At the same time, I made good, decisive turns. At one point, I decided to cross a bridge in order to try looking in a particular neighborhood. I had been in the neighborhood the day before, however, I had entered from another direction. Again, I followed the arterial streets and within minutes, not only did I discover how to meet up with my previous days' journey, but I also found my bank. I shouted "Hallelujah!" outloud and breathed a sigh of relief.

I think life is a lot like this journey: It often feels unsettling, it usually includes few, clear directions, and sometimes you don't get to know if you're headed in the right direction. This is precisely what makes the journey so exciting to me. Because it forces me to engage in the story in real time. It forces me to feel, to think, to pray, to dream, and to change my plans. And it forces me to trust a God who knows, who feels, and who truly cares about my entire story.

When I am lost, then I am found.

A.

Confidence/One

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

Dear friends,

I recently discovered this sacred place in Seattle called, fittingly, Discovery Park. Last Saturday, just a few hours after I arrived in the Emerald City, I decided to do a little exploring in this space. The only prior information I had about Discovery Park was that it is Seattle's largest park and has a front-row seat to the Puget Sound, both which were enough to get me there.

With only a general idea of its location, I easily found the south parking lot, put on my running shoes, studied the park's map, then walked in the direction of the water. The air felt cool, the clouds comforting, the light arcane. Somewhere along the trail, I decided to take a right onto a path that led to an old, white chapel. I gaped. As I slowly walking around it, I ogled over the church architecture and imagined the kind of history lived in this church. I hope people still gather in the building.

Carrying the same presence as a lighthouse, the chapel overlooks a sweeping view of the Sound; acres of grasses that open up and invite visitors to play; military families' homes - a sign of contribution; children playing games in the distance; couples walking side-by-side; and then there was me. From the chapel, my journey took me through the middle of the grasses towards the bluffs. The trail zigzagged all the way down to the edge. I stood there for many minutes to watch a freighter hustle to its final destination, perhaps to its home. Sailboats dotted the waters. Hikers peacefully passed behind me. The wind whistled.

Contribution and Spirit. Community and play. Beauty and possibility. A thrilling, mysterious collision.

This is the journey of confidence.

A.

The Accidental Blessing

Dear friends,

It was an accident. Really.

In late July, I emailed Richard Beer, the Artistic Director at Hollywood Theatre here in Portland, suggesting that the theatre run the Lyme documentary, "Under Our Skin." Within the week, Richard responded saying the film was sitting in his home along with a bunch of other films he needed to watch. He promised to move it to the top of the stack.

Because I didn't expect to hear from him for a while (if at all) and because I got distracted with some personal stuff, I forgot about it. To my surprise, Richard emailed me four short days later. "Boy was that an eye opener!" he wrote. "I would love to get together with you and talk about how we can bring the film to the Hollywood and get the word out on this important topic."

I never intended to get involved. Honestly, I was feeling impatient that the film wasn't coming to Portland yet (or at all) and just wanted to someone else to take care of it. But Richard's invitation to contribute to the screening of this worthy film was easy to respond to: Of course, I will gladly help. Thanks for asking.

From there the story unfolded quickly and naturally: I met with Richard, we determined a screening date, he suggested a Q&A panel, I happened to be thinking the same thing, he notified the distributor, I recruited panelists, the panelists eagerly agreed, we collected "Under Our Skin" promotional materials, he printed out labels, I cut and stickered the materials, we distributed the materials, I wrote my friends, my friends wrote their friends, my personal email address became not-so-private anymore, I asked my awesome photographer, Aaron Courter, to shoot the event, he enthusiastically agreed, I fielded emails, I remembered that people can ask some pretty strange questions sometimes, Richard graciously answered those strange questions for me...and now we are here. In a little more than two months, we are successfully pulling off one of the most powerful events the Portland-area Lyme community has ever experienced. On Saturday at 2p, we will see Lyme sufferers, their friends and family, medical professionals, students, and the general public descend on the Hollywood Theatre to see "Under Our Skin."

I expected the planning process to be fun, tedious, and tiring. I wasn't disappointed. However, I didn't realize that I would be organizing an event that was effectively validating every Lyme sufferer in the area. I have come to learn that "Under Our Skin" is actually a means to expose and to affirm, to unite and to gather momentum, and to love and to love more. I have the best view. I get to see the dream put into action, I get to hear Lyme sufferers' stories, I get to see people become real excited, and I get to step back and watch the entire thing unfold as it's supposed to be.

A.

"Under Our Skin" will open on Saturday, September 26, at 2p at the Hollywood Theatre, 4012 NE Sandy Blvd., Portland, 97212. A Q&A panel will follow. Resources from area support groups and non-profits will be on hand to provide resources. In addition, Aaron Courter will shooting free, individual portraits of all Lyme sufferers in attendance, which they can take home and use however they wish. The photography is intended to honor these sufferers and give them something they may not have the money for. There is talk about using these photographs for a book of stories, so we'll see.

The Hollywood will also play the film at 5p on Saturday, and then 2p and 5p on Sunday, September 27. Resources only will be available at these showings. 

If you do not live in Portland, "Under Our Skin" may be playing near you. Go the website for more info. You may also purchase the DVD on the website.

Physicology/31

Dear friends,

I have great news and I cannot contain it. Today my doctor told me that he projects the end of my treatment to be in six months. Six months! That is a half-year ahead of schedule and about five years ahead of my own (faithless) projections.

"You look really good," my doctor said.

"I feel it," I responded.

"Have your friends and family made comments about how you look?"

"Yes they have, especially those who haven't seen me in a while. I'm feeling really good."

"On a scale of 1-10, how much energy would you say you have?"

I thought about it for a moment. "Nine. I think last time I was here I said I was an eight."

I am now officially in the last stretch of treatment. I know so because I have started taking a supplement called Lumbrokinase, which is an enzyme from an earthworm. This supplement is known to break down something called "biofilms" in the body. Biofilms are not new to scientists, but it has only been in the last few years that we have discovered that biofilms may be preventing Lyme patients from becoming healthy.

In case you are wondering, biofilms are essentially a bunch of germs that are completely surrounded by slime. Neither antibiotics nor rifing penetrate the slime. If the slime isn't penetrated, then these germs will continue to wreak havoc on the body. My doctor was careful to note that he isn't sure if I have biofilms, mostly because there is no testing method to determine if I do or not. He also noted that my remarkable improvement probably indicates that I do not have biofilms since if I did, my improvement would have been a lot slower.

Nonetheless, my doctor told me that he likes to attack the biofilms at the end of treatment to prevent the surprise of relapse. I approved. I will now be taking the earthworm enzyme for four months unless I herx, which means that I will be taking it until the end of treatment. He gave me the option to begin taking it in November when I see him next, but I opted to start now. Because I have absolutely no reason to wait.

I am estatic and encouraged and hopeful. And I feel like dancing.

A.

Tiny, Dark Crevices

Hi everyone,

The other day I was reading a book about relationships, and in it the author quoted another author who had written that people unconsciously choose romantic partners who have a better immune system than they. Though the author of the book I was reading eventually refuted this statement later on, once I read that quote, I looked up from my book, laughed, and looked at the wall. Flabbergasted, I spent a few moments digesting what I had just read.

And then my laughter turned into tears.

Because the reality is that my immune system isn't so great, therefore, according to the author, I am virtually undesirable.

Is this true? Hell no. Because I have hope in the God who redeems, who heals, who doesn't let illness overcome His children.

Yet messages like these are ever so common. I know so because I have worked to refute such messages for a long time now, even before I got Lyme. Like the Lyme bugs hanging out in all corners of my body, these negative messages are sneaky: they work themselves into the tiny, dark crevices of my heart, my mind, my being. I usually don't even realize these negative messages exist until I read statements like above, or someone says something unknowingly hurtful, or when I'm told (explicitly or implicitly) to shut my mouth about the suffering I have experienced.

At this point, I like to remind myself of 1 John 1:5, "This the message we have heard from him and announce to you, that God is Light, and in Him there is no darkness at all." This is the message I want to hear everyday. Likewise, this is the message that I want to break into those tiny, dark crevices.

Towards freedom,

A.

Madison: Reflections on the Effect of Being

Hi everyone,

I can't remember the last time I had so much fun at a wedding.

I suppose the fun time had something to do with getting the chance to celebrate the marriage of a great friend to his bride.

Perhaps it was the opportunity to reconnect with college friends, some whom I count as lifelong friends.

And I suppose I had so much fun because I was feeling great: Not only did I have enough energy to withstand the multiple gatherings that weekend, including the wedding itself, but I also had the energy to travel, stay up way past my old-lady bedtime making pillow talk, and complete several hours' worth of schoolwork.

But I think the real reason I had so much fun was determined by, in the words of one of my professors, "the effect of being."

******

Six months ago, I'm not sure I would have even tried on the dress I wore at the wedding. For one, it's quite form-fitting and short. And two, it's quite colorful. But things are different now.

After seeing it on the rack, I couldn't help but try the dress on. It's hard to miss, really, but in a good way. Once I put it on in the dressing room, I swayed side to side. I smiled big.

"The dress is named 'Bounce,'" the sales lady told me.

"Even better," I said. "I'll take it."

At the wedding, I felt radiant: sexy, lovely, feminine. I smiled a lot.

I know the magic of being isn't in the dress, nonetheless, it's staying with me for the long haul.

******

While all my friends fled town, I spent an extra day in Madison. Though I would like to say that the "effect of being" was the reason for the extra time spent there, it was really because it was cheaper to fly the day after Labor Day. Fortunately, some friends of the bride and groom's offered to let me stay with them for the night. I was most grateful for the shelter, but more delighted by the home's location being one block from Lake Mendota, Madison's largest lake.

The sun was gentle, as was the lake breeze, so I went. I walked to the nearest park, which I found to be nearly empty. I sat down on a bench a few feet from the muddy bank and watched boats speed by, water skiiers jump waves, and a few people frolic in the shallow waters.

I sat there allowing myself nothing - yet everything - to do. I didn't crack open my Bible. I didn't purge my thoughts onto paper. I wasn't even decompressing - for me a normal response to a long weekend of time spent with people. The only thing I was doing was enjoying the view. I carried no clock with me.

At some point, I moved to a gentle, grassy slope to get a better view and stretch my legs. I sat there gazing upon the beautiful waters, thinking thoughts like how I have always lived near large bodies of water and that I considered moving to this city once. I thought about how I got to be here, right there, next to this Madison lake, sitting on a slope, with no expectation, and nowhere to be - except here.

God must have an incredible imagination, I thought, to do what He has done, in the way He has done it, when He has done it. And He is still doing it.

I began to weep. The thought was overwhelming.

Because He is the One who provides the space for my recovery, who is patient, and who gives me the freedom to say 'yes' or 'no' and isn't even threatened when I dissent. He is the One who creates a beautiful story, a story worth sharing with my grandchildren. He is the One who knows, understands, comforts, loves. He is peace. There is no one else who could possibly create the story in me, through me, what He has already done, what He is doing, and what He will do.

It's worth it to keep turning the page.

A.

A short description of the pictures:
Top: An honest attempt to get the bride and groom, and 19 Northwestern folks, their spouses, and spawn in one photo booth.
Middle top: Marisa, Danielle, Anna, Clarissa
Middle bottom: Another honest attempt except without the bride and groom this time.
Bottom: Just me.

One Step Beyond Furiosity

Dear friends,

Today I got furious. Not mad or upset or annoyed. Furious.

As I have written before, money is always tight for me, and since my medical expenses account for at least two-thirds of my income, I rely on that money to live, to get better, to be healthy. I rely on that money to, among other things, purchase medicine, go to my acupuncturist, and visit with my doctor.

Today Gonzaga called to notify me they were threatening to cut me from class if I didn't pay. I was confused. I am definitely not taking a class and submitting assignments because I have nothing better to do. I also thought that if there was financial aid money sitting in my account, one would naturally assume it was to pay the tuition. They told me that I had to notify them to give permission for them to use the financial aid money to pay the outstanding balance - and I should have been doing this at the beginning of the last two semesters, as well, which, of course, I hadn't done. Apparently, as they told me, people apply for financial aid and then sign up for classes, but then never attend class. I get it - I do - but how can they explain why this is the first time they have held my check?

It didn't take me long to figure out why I have yet to receive my financial aid check (my income). Since they were still waiting for this notification, they had not submitted the check to me - money that I rely on to live. And this is what makes me feel furious. Because I need money to get better. I don't care about anything else, but my health, well, if I don't have that, what do I have?

If I don't invest in my health, the consequences are dire. Take this morning even. I had an already scheduled massage appointment, which was convenient because I ended up having a herx that started last night and lasted through this morning (and could be hanging on now even as I write this). Consequently, I didn't sleep well, I was achy, and I felt incredibly tired. I told my massage therapist about the herx, and then she went to work. An hour later, I walked out feeling much less achy and more energized. I was able to go to a short meeting and then I was able to come home, start studying, and then deal with this situation.

My friend Debra told me just yesterday that the thing that rankles me most is when I feel out of control and not even my responsible Self can remedy the situation. I think I can handle most things with patience, but when it comes to finances in relation to my health, then it begins to feel like I'm inferior to others. When I feel inferior, I feel helpless. And when I feel helpless, I feel hopeless.

Then, no longer furious, able to feel what I was really feeling, I sat on the ground for a good while and just cried.

A.

P.S. I admit that I could have lowered my voice a bit on the phone. I admit that I could have called someone a bit earlier when I didn't get my check. And I admit that I felt incredibly humbled when the woman said she would use her own stamp to mail the check tonight, so that I could get it before my doctor's appointment next week. In gratitude, I am going to mail her a thank you card with two stamps inside.

Lyme & Validation

Dear friends,

Today I had the privilege of hanging out with an old roommate who now lives in another state. Towards the end of our journey together, we hopped on the MAX (Portland's light-rail train), and as we did so, I asked her if she needed to buy a ticket.

"What do you mean?" she asked.

"You have to buy a ticket to ride the train. Didn't you buy one on the way down here to meet me?"

"No, I thought all trains were free."

"You lived here for three years and never paid to ride the MAX? I can't believe you haven't encountered a fare inspector. They were even on my train earlier today."

Most everyone knows that if you don't have validated fare, you don't ride (or risk getting a ticket, I suppose). But what if the validation machine is out of order? Though a passenger may have the unvalidated ticket in her pocket, or even the correct change, no validation technically means she is committing an offense.

******

I am currently taking a grad school class called Research Methods, which is taking up more time and energy than I prefer. One reason for this is because the class is designed to help the student create and design a research study that could theoretically be used for one's dissertation, that is, if she chooses to continue on with her education. Since I am seriously considering getting my doctorate, I have felt significant pressure to find a dissertation topic...um, like yesterday.

I hope to go into more detail about my project when I complete my class, but for now I can tell you that the research study I have proposed is to evaluate the predicted and measurable outcomes if the community-based participatory research (CBPR) model is applied to the Lyme community in the Portland-Metro area. In other words, when citizens are invited into the process, design, and implementation of Lyme research, what would be the effect not only on the health, but also the social ties, of the community? For what should be obvious reasons, I am quite giddy about this topic and hope that if I do get the opportunity to put this study to the test, the results would be of great benefit to the Lyme community.

In my furious reading, I read a case study about youth participation in building youth-oriented public space, such as skateparks, in the United Kingdom. The author had few positive things to say about the way the government included the youth into the design and implementation process and summed up the case here:

The ideal, user-oriented notion of free access and expression in urban public space has been perverted into increasingly regulated managerial representations of the "appropriate" form of public space and public activity. This does not respond to the differences and unpredictability of the existing space; rather, it privileges consumer activity and either displaces or disperses anything or anyone that might threaten the "orderly flow of commerce" (Rogers, 2006, p. 121).

We like things black and white, obvious, fast. We like cars to travel in their own lane, we like computers to connect to the Internet in fractions of seconds, and we like our health to be repaired faster, cheaper, and, of course, by the best doctors. But what if there is no fast remedy? What if the treatments are expensive? What if there are few "best" doctors? This is all true of the nature of Lyme Disease. Furthermore, the ironic thing is that these questions are based on the assumption that we know what the problem is. (Again, this is true of Lyme Disease.) What if we don't know the source of the problem? Do we treat the symptoms? But what if the symptoms change from month to month?

We have created a culture that relies on predictability. We are a culture that forces people to fit onto forms or into check boxes. If you don't fit, then we can't do anything for you, we say. Sometimes we turn people away with a good luck and a smile - a gesture that only lessens the guilt of the person doing the rejecting. Still, other times we hear, you don't have Lyme Disease, get out of my office right now! (I wish I were making that up: several Lyme sufferers have told me they have heard those words come out of doctors' mouths.)

Like the government that forced the youth to congregate into a few areas in the city, the health care industry squeezes us into particular areas that are deemed politically correct, manageable, identifable. There are many reasons for this - money, limited knowledge, competing political interests, money again - but what I find most interesting is that public health is not on that list or anybody else's list. In fact, I have yet to hear anyone address the problem with the current health insurance debate, which is that the plan neglects the thing we should really be talking about: health care. I'm not knocking President Obama's plan - people need assistance to pay for their health care - but so what if everyone gets insurance? I have insurance and the care I receive is nowhere near an acceptable level.

The actual conversation we should be having is about working solutions that first benefit the public good, that is, you and me and our neighbors. I have a hard time believing, however, that conversation won't happen until we begin to love our neighbor: when we begin to see people as human, with weaknesses, with blind spots, and, most of all, with a deep need to be loved. Jesus Christ came as a life-giver. He came with compassion. And He came to redeem a ugly situation. He validates, He affirms, He loves.

******

A few weeks ago, after I sent a mass email to friends, family, and people with Lyme, one of these email recipients informed me that some people find the term "Lymies" (a word I had used once or twice in the email and a word that describes Lyme Disease sufferers) to be quite offensive. This was a real surprise to me, since I have used the term countless times here on this blog and in other forms of communication. While it would be a great boost to my ego if I had come up with a term that rolls off the tongue so easily, I first heard "Lymies" spoken by Bella (not her real name) and have seen the term used all over the Internet. Personally, I find that "Lymies" is more convenient to write than "people suffering from Lyme Disease."

According to my informant, the term "Lymies" has been used in a derogatory context particularly in Lyme's early days (i.e., 1970s and 1980s). My informant told me that the term tends to rankle older people obviously because that population were adults during that time. To satisfy my curiosity, I decided to do a few quick Internet searches on the derogatory nature of the term "Lymies," but I did not find anything to suggest people with Lyme Disease have been publicly offended it. I did, however, discover that the term was used derogatorily by Afrikaners towards British immigrants. Completely interjecting here, I wonder if Lyme sufferers find the term to be offensive due to the association.

No matter the reason, perhaps, then, the term "Lymie" shouldn't be used at all. So after careful consideration, I have decided to heed the advice of my informant not only because he is someone I trust, but also because I choose to respect the Lyme pioneers. These are people who have sat in countless doctor's offices and hospitals for decades just to find one doctor to believe and champion for them. These are people who have listened to handfuls of loved ones tell them they are lazy. And these are people who have lost most of their lives to the deterioriating effects of Lyme Disease. So from now on, I will chose to use the term, "Lyme Disease sufferer" or just "Lyme sufferer." Because I wish to honor and validate their experience.

******

Last week, Ruth asked me how I felt that the insurance companies hardly validate me.

I laughed. "I don't care if they accept me or not - I'm going to get better with or without them."

My worth is tied elsewhere.

A.

Rogers, P. (2006). Young People's Participation in the Renaissance of Public Space - A Case Study in Newcastle upon Tyne, UK. Children, Youth and Environments, 16(2), 105-126.

Ain't No Superhero

Dear friends,

I would like to say that I am better, but I am not. I would like to say that I can do anything, but I cannot. And I would like to say that Lyme doesn't get the best of me, but so far, I am still waiting to say that. Ever since I arrived home from Madison Tuesday night, I have been herxing like crazy. I am very tired, experiencing a headache most of the day, and experiencing increased joint pain. I can even feel the inflammation behind my knees - one of the first initial symptoms - which tells me that it's really that bad.

It's entirely my fault for not resting as much as I should. I haven't been listening to my body enough, choosing to push through the pain and the fatigue all in the name of "other things." Those "other things" are school, "Under Our Skin" marketing, Rife treatment, and other projects. I'm going to take Saturday morning off, watch "Entourage," and rest. I am looking to spend time talking with God, reset my rhythm, compartmentalize a little more than I have, and make a better calendar of all my responsibilities through the month of September.

I can't help feeling regretful, like I got myself into yet another situation where I can't follow through, where my poor health wins yet again, where I have to apologize to those counting on me. I also can't help feeling like, as I move into a bit of normalcy, I'm bound to experience the tension between a life lived in recovery to a life lived in forward movement. I long for the days where I have nothing to do, and yet I long for the days when I can provide for myself. Can I experience both at the same time?

A.

Chasing Adulthood

Dear friends,

On at least two occasions in the past week, I have had the strange urge to drink a beer. This is an odd feeling to me for a few reasons. First, I have not had a drink in nearly two years. One of the foundational tenets of recovering from Lyme Disease is not to consume any alcohol, not even a tinge like you would find in the divine dessert, tiramisu. The second reason for this strange desire to drink alcohol is that I was never much of a drinker before I contracted Lyme. The most alcohol I have consumed in one sitting was two drinks...over three hours.

The urge to drink beer, then, came as a surprise. As I watched the glasses being poured and the kegs being emptied, I imagined the day when I will be given the freedom to choose to join in. Meanwhile, I will drink my water and (too often) my lattes and chase adulthood in other places.

A.

Physicology/30

Dear friends,

For the first time since I began graduate classes 15 months ago, I feel like I am working. This class I am taking is stressful, confusing, and time consuming. Normally, this might be easy to handle if I hadn't already committed to other projects. Plus, I am traveling to Madison, Wisconsin, this weekend for a friend's wedding, and am anxious about how well I will travel. Most of my time will be spent in the presence of college friends, which sounds really great, but for me adds a bit of stress. Meanwhile, I have gotten a cold, which makes me a little extra tired.

Despite these complaints, I am experiencing some incredible stamina that I haven't had in years. When my friend Joel asked me how often I need to rest (i.e., lie down), I had to think about it for a moment. I realized that I haven't needed to lie down in days. In the last few weeks (which is as far back as I can remember), I have needed to do a little extra resting on the weekends, though the degree of pain and achiness I feel is significantly lower.

Even as I write this, I am baffled. I mean, I never imagined I could be here, feeling this good, doing what I'm doing, meeting the people I am meeting, and participating in God's story like I am. In the last month, I have had more surprises than I know what to do with, more clarity than ever before, more patience, and more faith. There's something inherently beautiful and exciting about life lived carefreely and openly, and I'm sincerely looking forward to what's next.

To the possibilities,

A.

Burden & Plenty

Dear friends,

If there is one thing that binds Lyme sufferers together, if there is one burden heavier than the rest, if there is one reason for sufferers not getting better, it would be the lack of money. Nearly every Lymie I know struggles with how they will pay for their medicine and treatments - or if not that, then their mortgage and food.

The reasons for the financial struggle are plentiful. For one, most people suffering from Lyme are unable to work, therefore, they rely on spouses, extended relatives, friends, church support, or government assistance. It's usually a combination of all or some of these.

Another reason for the common financial struggle among Lymies is because most medicines and treatments cost something. Even if it's just a co-pay, when you must purchase six different medicines from the pharmacy, see your doctor once a month, and seek alternative care treatment several times a month, the cost quickly adds up. We would be absolutely satisfied, however, if we had to incur only the cost of co-pays. More often than not, when the diagnosis is Lyme Disease, insurance companies choose not to cover medicine and treatments. For example, last year I spent about $150 per month for six months on an antibiotic that is not covered. In addition, my insurance does not cover supplements, Rife treatments, or counseling.

Finally, because many Lymies do not work, either they rely on their spouse (who presumably works) to provide the medical insurance, or, if they have not been denied, they pay the insurance premiums out of pocket. In my case, I take the latter route by paying for my insurance premium through COBRA. I have nine more months under this program until I must find another insurance plan. While I am thankful to rid myself of one of the most bureaucratic insurance companies I know of (I say this because health practitioners have echoed my sentiments), I am nervous that I may be rejected for my "prior condition." I suppose I will deal with that problem in the spring, but it does cause me great worry.

******

The following is a snapshot of my typical monthly medical expenses. These expenses were incurred between the first and last days of August 2009:

• Medical, dental, vision insurance premium: $294.41
• Pharmaceutical medicine: $85.98
• Supplements: $263.80
• Rife machine: $80
  
• Acupuncture/Chiropractic/Massage/Counseling: $129.25
• Travel: $86
• Total: $939.44
• If I had seen my doctor in August, add another $200 for a total of $1,139.44.
• Total YTD: $9,081.25
  

******

In late July, I decided to apply for food stamps. This was a big step for me mostly because I don't enjoy asking for help. (But I suppose few people do.) In fact, it took me more than a year to apply for food stamps. I considered applying for food assistance last summer after I stopped working, but I assumed that with no rent, no car payment, and no other people to feed, I would not meet the criteria. Lately, some friends began to encourage me to apply for food stamps and since I had just experienced a year of knowing how tight finances really are, I laid down my pride and spent an afternoon in the Department of Human Services office.

I still didn't think I would meet the criteria, but my friendly social worker explained why I did: While students are expected to work at least 20 hours per week, because I have an additional hardship (an illness that keeps me from working), I very much deserve the benefits. I receive $200 each month. The amount was quite unexpected and a little more than I need, but nonetheless, it really does relieve me of this one burden.

******

I have a love affair with money. If I worried about it before I got sick, I certainly worry about it now. I am constantly thinking about how much money I (don't) have, which health expenses are coming up, and how much debt I will be in come the end of graduate school.

I worry that the exorbitant amount of expenses will follow me for much longer than the illness ever will, and I worry that I won't get to do the things I dream of doing.

Meanwhile, I worry that I am too concerned about what everyone else is up to, and I worry that I am too concerned about money.

I wonder if everything will turn out just fine, and I wonder that all the time I spend worrying now will turn out to be a big waste.

I wonder if He knows what He is doing. I wonder if He has a wonderful plan - too wonderful to understand right now.

I wonder if I am being protected right now from larger concerns and further debt.

I wonder if I don't know how much plenty I have.

Jesus says He will take care of the sparrows, so why wouldn't He take care of me? I can't spend too much time reminding myself of those words.

I wonder. I believe.

******

I think it's important for you to know what it really costs to be well. These financial burdens and worries are typical for any Lymie or, for that matter, anyone with a chronic, debilitating illness. And if you can't tell by now, I don't play games. I shirk most games people play (dating sure comes to mind right now), including the game we play called "Hide Your Money." I don't expect you to show me your checkbook, but I do believe we need to talk about it more.

In fact, I think we want to talk about it more. One of the most common questions I get is, How do you pay your bills? This is a question borne out of two-thirds legitimate concern and one-third politically incorrect curiosity. I suspect that half of the people who ask this question are expecting me to tell them I have a large trust fund, but no, personal financial wealth has never been part of my experience. My usual answer is that I am in grad school and I live with relatives to keep my normal costs low. Yet, here is the answer (and subsequent conversation) I would rather share with them:

Ecclesiastes 5 begins with the exhortation to "guard your steps as you go to the house of God and draw near to listen rather than to offer the sacrifice of fools" (Eccl. 5:1, NASB). This is important to remember as we read the rest of the chapter. After the author commands us to be careful with our words and to not flip out when you encounter injustice, he then moves on to the topic, the love of money. Now remember that the author is asking us to draw near to God, to listen to Him, to make Him Lord over your life rather than become indebted to fools. For the rest of the chapter, the author writes that the rich will be burdened by the amount of responsibility that comes with wealth. For the more people consume, the greater the rich must supply. In contrast, the lowly worker is only concerned with going to work and providing for his family. The worker's sleep is "pleasant" - his responsibilities are few and his worries even fewer.

I don't think the author is railing on the wealthy because it's apparent that the wealthy, like the poor, will always be among us. Yet, wealthy or poor, what I think the author is getting at is what comes towards the end of the chapter. To the poor, he writes, "Then I realized that it is good and proper for a man to eat and drink, and to find satisfaction in his toilsome labor under the sun during the few days of life God has given him - for this is his lot" (Eccl. 5:18, NIV). Then to the rich, he writes, "Moreover, when God gives any man wealth and possessions, and enables him to enjoy them, to accept his lot and be happy in his work - this is a gift of God. He seldom reflects on the days of his life, because God keeps him occupied with gladness of heart" (Eccl. 5:19-20, NIV).

The Lord desires that we accept whichever situation we are in - not with passive obligation but with active enjoyment. God did not have in mind for us to say just one more hour of work or I won't pursue that girl until I feel settled or I will wait until I have more money to deal with my health. Our days really are few even though He's asking us not to think about that, either. Rather, He is asking us to seize what we have now, to engage, to enjoy. He is imploring us to reframe the situation: to concern our hearts with gladness rather than burden, to concern our hearts with plenty rather than scarcity, to concern our hearts with love rather than emptiness.

This is what I have: a family who really does love me (even if it's difficult to see sometimes); a multitude of friends on a handful of continents; the ability to concentrate, which allows me to write and work on a Master's degree; enough money to pay for my medical expenses; my ever-increasing health; a pretty sweet tan; and, most significantly, a life found in Christ.

As I said above, I think people want to talk about finances. So what if we started talking about it? What if we started telling each other how God provides, where we feel rich, where we feel poor, and how we feel led to give? What if the conversation turned from our bank accounts to what really lies in our hearts? What if the conversation turned from how busy we are to how we are enjoying the fruits of our labor? What if we changed the conversation? What do you think would happen?

******

I may be financially poor, but in all else, I am rich.

A.