I miss the woman I used to be.

Today is the last day of Lyme Awareness Month and I find myself struggling.

I miss who I was and I struggle to accept that she may never return. I used to bounce, constantly. I had a bottomless well of energy. I was constantly social, always connecting with others. Now even bouncing wears me down. I wouldn’t label myself anti-social, but I no longer make and maintain connections like I used to.

One of the things that hurts my heart the most is that I am not able to be there for my friends like I used to. Supporting the ones I love has always been so important to me. I missed my friend’s bachelorette party (that I helped plan) because of herx reactions. I will miss another friend’s wedding because I don’t have the energy to get there and back. Even just reaching out and being a friend is difficult for me.

I miss being academically gifted. I hate suffering from dysnomia (the inability to recall the correct word from memory.) I am a concise writer and select each word carefully; due to the dysnomia, I will search for the word I want for 20 minutes or more. (ok, I’m also neurotic.) I’ve also noticed that I struggle to pronounce words, which I wonder if that is a similar neurologic process. When talking, I may say what I am thinking but random, incorrect things might come out of my mouth instead. Sometimes I am able to catch my errors but sometimes not. It’s even harder for me to write my thoughts. I am blessed that a friend has volunteered to take dictation for me so that I can finish up my summer semester. I know that I should be careful what I wish for but I almost wish that I wasn’t able to recognize the cognitive changes; I find myself longing for the bliss that ignorance bestows.

In a backwards sort of way I was blessed when twice I considered just giving up. Each time I was presented with an easy way out: the first time I was swimming and ran out of energy; I looked around to find the pool edge to grasp and realized I was in the middle of the deep end. I knew that I could have just allowed myself to drown and I would be released from my suffering. However, I chose life. I kept my lungs inflated, did a deadman’s float and waited until I floated close enough to grab the pool edge. The second time was a couple months ago while I was struggling with pneumonia and was in so much pain I wondered if I could continue to bear it. While swallowing my joint supplement pills, they lodged sideways in my throat. A couple months prior to this a dear friend had choked and died suddenly, so I knew how dire my predicament was. I knew that I could panic and allow my throat to close and that would be it, the end. Once again, I chose life. I remained calm, continued to breathe, and waited for the pills to dissolve and pass through to my stomach. It took a few hours but it was worth it. My doctors say that I have too much life left in me to give up yet.

The fact is that the past is gone. What was cannot be retrieved, so I must figure out how to work with what I have now. I must love who I am now, learn patience and acceptance. I just really miss her.

Letter to my mom on Mothers Day

Momma-

I love you so much. While I miss you, I also feel closer to you now. I have been known to make the (inappropriate) joke that our relationship is better now that you are dead, but there is truth to that statement. I am able to hear you clearer now, unclouded by your mental illness that screened out the wisdom you have to share.

We both grew up with privileged but at the same time hard existences. Few are able to understand that; they see money as the greatest thing- it is not. Money allows crazy, abusive parents to be deemed “eccentric.” The things done to you were inexcusable. You worked hard to break the pattern but you had a mammoth task and were merely human.

You have the heart and passion of a lion, my august born momma. You prepared me well for this capricious life I live; I am able to face my challenges head on, knowing that I have survived far worse at a much younger age. Everyday I attempt to allow your passion and wisdom guide me. I try to hear you, to ask your advice when I lose my way.

Some say that we choose our life, including which parents we are born to. I don’t know if I agree with that. I do know that while my relationship with you was far from easy, the rewards are more than worth the struggles and I am grateful to have had you as my momma.

Happy Mothers Day.

My Lyme Story

People struggle to wrap their brains around my Lyme experience and I struggle with how to explain it without sounding pitiful.

I suspect I had Lyme's for a while before being diagnosed or even falling down ill from it. In the fall of 2006, a doctor thought I might have MS but also ran tests for Lyme; I tested negative for both. In the spring of 2007, I had a boiler room job where I was working 50+ hours a week. I would come home from work and pass out on the bed in my suit only to wake the next morning, change into a clean suit and repeat the process. My husband worried about me but I thought all my co-workers were doing the same thing (it turns out they were speaking in hyperbole, where I was speaking literally.)

I officially fell down ill on June 2, 2007 with flu like symptoms, including high fever and vomiting. From that point, it took them over two months to come up with the Lyme diagnosis. I ran a fever for 28 days straight.

 The story leading up to the diagnosis is long and humorous with the distance of time and includes more blunders than anyone should have to endure. (picture 7.5 hours in the ER, after being removed from D.C.’s Union train station on a stretcher because they convinced me I was having a heart attack, and the only diagnosis the E.R. could come up with was a bladder infection!!) Yes, this gives a good indication of the idiocy I had to deal with.

I spent a year and a half bedridden; when I was finally able to make it beyond the bedroom, we celebrated. During that time I slept 20+ hours a day. I had significant cognitive deficits: I temporarily lost my short-term memory, I lost entire conversations and I wasn’t able to follow a half hour TV program if I hadn’t seen it before. My ability to read, write, or access my long-term memory was hindered. My life is demarcated “pre-Lyme” and “post-Lyme.” Pre-Lyme I was very capable academically, so of all the things Lyme has taken from me, that is one of the hardest. I employed a neuropsychologist to help me figure out how to retrain my brain. The process of regaining access to my memories has been fascinating, though long and inconsistent.

These are my morning pills. I have to repeat the process in the evening.



I believe I have been through a total of 8 different courses of antibiotics (but I have lost count at this point.) My last course of antibiotics (a combo of Biaxin and Plaquenil) lasted for over a year and finished the summer of 2009. Daily I take several medications to assist in pain management in addition to other supplements to help manage the side effects of Post-Lyme Syndrome or the meds. To the right I have included a picture of my morning meds, I take even more in the evening. I battle nausea and other side effects from all these pills.

I believe in combining the best of both Eastern and Western medicine, so I swear by weekly medical massage and acupuncture. I have found that movement is key to reducing pain but I have also noticed that staying strong helps reduce my setbacks. In order to accommodate my unique needs I do private therapeutic yoga multiple times a week and pilates once a week.

I am an equestrian and I find that just sitting on my horse raises my spirits so much and in-turn helps me physically.

 Some days I am a strong and capable rider; other days I grab mane and my trainer leads me around the farm on a pony ride. I think this confuses people- that what I am capable of changes from day to day or week to week. There are so many factors that go into the mix to determine how I feel: the weather tops the list, but also stress, sleep, diet, change in meds, and if I have been pushing myself too much are the primary ones. But true confession: if there is something I have my heart set on doing, I manage to dig down deep and find the strength, however that usually causes me a setback.

There seems to be something about how Lyme affects the hypothalamus because it is common among “Lymies” to be constantly cold. I’m not talking about the “oh wow, I should’ve grabbed a coat” cold; I’m talking about wearing a winter coat, hat and gloves during the summer type of cold. I sleep with an electric blanket most nights, even hot Atlanta summer nights. Days that I feel worn down and in pain, I get particularly cold; they seem to go hand in hand. Of all the things that people don’t understand, this one is the hardest for me, I suspect because it is the hardest to explain.

Pre-Lyme, I went a million miles an hour constantly. A woman speaking about living with chronic pain said that those that live in chronic pain have a limited number of energy marbles, while the rest of the world has a limitless supply. I have had to learn to plan and ration these marbles in my post-Lyme life. I wear down so quickly now. (I find myself chuckling at the irony that my childhood baby-sitters would have loved for me to wear down; lord knows I was constant, boundless exuberance, which was exhausting to those in charge of my care.) Now, I have had to learn to pace myself and be patient with myself, skills I am not known for.

It is my understanding that Lyme's will be with us forever, similar to Shingles. It can flare up in times of stress (just what we need when we're stressed.) But Lymies can do things to help our bodies stay strong and prevent flare ups: eat well, sleep, exercise, be mindful of weather events (cold & wet are hard on me), try to reduce stress events or prepare for them.



With all the terribleness of this disease, I used it as an impetus for positive change. I am currently in my first year at Emory University's Candler School of Theology pursuing my Masters in Theological Studies. I am here because of my Lyme. I was bedridden for a year and a half, suffering mentally, physically and cognitively; I was so close to just giving up. Lyme is rarely fatal, but when you loose so much of your life, the finite nature of our time on this planet comes into stark contrast. So I decided that I was going to fulfill my lifelong dream of studying religion at the graduate level. When I made this decision two years ago, I had no idea how I was going to make it happen but I was determined. (Dr Aucott and I believe that one of my greatest tools in dealing with Lyme is my stubbornness, I am fully using it to my advantage.)
 If Lyme had not forced me to step back from my life, I would not have had the opportunity to follow my dreams. Do I consider getting Lyme disease a blessing? No. But I refuse to give in to this tragedy.

[editors note: I’ve been working on this essay for quite a while now. There is so much more to say. I will continue to work on this and will repost as new versions they develop.]

How do we see God?

This evening in my Praxis fellowship meeting we discussed how do we see God. Chris began by showing a clip from Ira Glass’s This American Life. People gather in the Mojave Desert to gather photographic evidence of God’s existence. These are people that are full of faith, yet they still feel the need for something tangible that they can hold close in the absence of being able to hold God close.

Last semester I took “Otherness of God,” in which we discussed the problem of addressing God as this Wholly Other, super human being. To make God approachable brings God down to the level of humanity and thereby stripping God of his/her omnipotence. Yet from the beginning of written history, humans have been trying to reconnect to the divine.

So how do we preserve the nature of God as this omnipotent, Wholly Other entity but still connect to the divine source? Do we call upon a mediator to act upon our behalf? It occurred to me that throughout history, humans have had many versions of mediators: saints, ancestors, lower level deities, etc. We pray to them to intercede on our behalf, to bring our prayers before God. Their job as mediator is to bridge the gulf between us and God.

But that is only one way to connect to the divine. While I am not above using a mediator as a way to connect to the divine, my preferred method is to see God in God’s creation. My first husband says he feels closest to God in the Grand Canyon. Most people experience that sense of awe when enjoying a vista of one type or other. For me, though, I connect to God by connecting with other people. I see the divine in each of God’s divine creations. The most basic tenet of my personal theology is to honor the divine in everyone.

Namaste: I honor the place in you in which the entire universe dwells. I honor the place in you which is of love, of truth, of light, and of peace. When you are in that place in you, and I am in that place in me, We are one.

Many theologians have pointed out that if we all began to honor the divine in each other, many of our social ills would be solved straightaway. It seems to me that our most important divine directive is to honor God’s creation, both the earth and humanity.

Since it is late and sleep is calling me, I will wrap up with a question: How have you honored God today?

Wise words to live by

Code of the West
 
Never go back on your word.

Never rustle another Cowgirl's horse.

Show honor and respect for all living things.

Never shoot anyone in the back.

Don't cheat.

Tell a good story.

Show courage.

Always tell the truth.

Be a trailblazer.

from the rule book for Cowgirls Ride the Trail of Truth.

How to send off the Bride-to-be

We wanted to show Hannah some Candler love, so we all pitched in and threw her an amazing bridal shower.

The theme was Favorite Things- instead of just buying things off a registry list, guests were instructed to bring their favorite thing and be prepared to share with the group what it was and why they selected it. This allowed poor graduate students to feel that their gift was valuable without hitting the wallet too much but mainly it was an amazing opportunity for us all to get to know each other better.

I am continually amazed by the fabulous people I go to school with. I love how open their hearts are. Hannah is not a pushy bridezilla by nature, so I worried about her getting enough love and attention. The love poured out to her today was so wonderful. The love and laughter flew freely, as did the alcohol. The games were creative and so much fun! Hannah got to be girly and giddy and silly. She was the Princess for the day, complete with sash and tiara to prove it! Yet, with the focus placed squarely on Hannah, she is still genuine and generous enough that the guests were allowed to reveal a bit of themselves too. I appreciated getting to know another side of each of the guests, learning about them in a way that I might not have otherwise.


Another thing that touched my heart so deeply was all the help that was freely given to me in pulling this party together. I am normally a control freak, which tends to create a feeling of disappointment in me when people don't succeed at the impossible goals I set for them. However, Post-Lyme has forced me to learn to ask for help, to rely on others and to trust. My faith was rewarded! Ladies, truly, you are all amazing! Thank you!!


I have posted pictures from our fabulously fun day on facebook. I hope that each person will comment on the picture with their gift and share why they choose it as their favorite thing to give Hannah. (The inspiration that went into the gifts was wonderful and I would love if you would be willing to share with everyone.)

Roaning Out

Roan is a coat color found in many animals, notably horses, cattle and dogs. It is defined generally as an even mixture of white and pigmented hairs that does not "gray out" or fade as the animal ages. While the roan color might occur naturally from birth, as an animal ages and naturally turns grey it creates an illusion of “roaning out.”

This last year, my hair has been getting blonder and blonder. I have always been a strawberry blonde, so I am accustomed to red hairs intermingling with blonde ones. Though I am indoors most of the time lately, due to academic pressures and health limitations, I am noticing a significant increase in the percentage of blonde hairs. In some light, they almost look grey, which sends a wave of panic through me. Friends have assured me that the hairs are indeed blonde. I reassure myself that they are blonde because the hairs are fine, where grey hairs are typically thick and coarse.

I have always hoped that I was secure enough to “age gracefully” but now that once far off possibility is coming closer to reality. I am not certain if my vanity will usurp power and if so, what form that will take: dying my hair, plastic surgery, a red corvette?

I continue to turn to the Serenity Prayer: to accept the things I cannot change. Nothing is stagnant, we are in constant flux, clinging to what is and what was will only cause suffering. Release and acceptance of this process of change creates inner harmony.

But most importantly I want to remind all of you: I am not turning grey, I am merely roaning out.

A Gleeful Day!

Today has been a good day! Starting with the end and working backward: Shayanna threw a wonderful Glee party (I got my Glee cherry popped,) where I finally got to introduce Hannah to my Praxis peeps. I was able to have some quality Hannah time before she leaves to go home for the summer. I got a surprise package containing fabulous looking Smartwool socks and wind chimes from my BFF Bobi. I had a wonderful active yoga session (the first active session since I got pneumonia.) I have released attachment to salvaging this semester. (Pray, but row for the shore.) I thought I had gotten past the cognitive deficits of the Lyme but they seem to have returned when I got pneumonia. I might still be able to save one class but I am working towards not beating myself up if I have to withdraw from all my classes. I am continuing to try to break-through this brain fog- still writing and trying to read. I got an encouraging email from one of my professors. I am still tired and coughing a lot, but I made it to class today! On Thursday I leave to go home to Maryland for my 20^th high school reunion. Now- bed.

True Confessions

In less than a week, I will be at my 20th high school reunion. I am normally very secure about my appearance, occupation, activities, etc even though the current circumstances of my life would push most women to neurosis. However, all of sudden I am finding myself obsessing over grooming and appearance. Wondering if I am skinny enough? Whitening my teeth, worrying about breaking a nail (really? Me, worry about my nails?)


These women are like my sisters- that is the nature of what happens in a small girls boarding school, we become family. I am sure there are some who disliked me, always have always will. But the ones who love me, love me for me- always have and always will. They don't care if my nails are perfect or my teeth are white.

I guess this is my public confession that I too am but an insecure girl inside, looking for love and acceptance and approval.

It is all relative

Perhaps it is because my 20^th high school reunion is next week, but I am finding myself using hindsight in new ways.

In 8^th grade I started attending boarding school. My dorm parent and advisor, Miss Beers, seemed so old to me, so wise and so experienced. While waxing reminiscent, it occurred to me that she was probably just out of college; it turns out that she was a mere 22 years old at the time.

I wonder how I would have handled the challenges presented to my teachers if I had to face them at such a green age. At the time I resented their reaction to my acting out, but now with this new insight, my empathy grows. They were so young to address so many complicated situations and relationships. My young teachers were no older than my current classmates.

So here I am about to attend my 20^th reunion, rapidly approaching 40 and I am looking both forward and back. While discussing Buddy Guy with a young classmate last night, she insisted that someone so OLD couldn’t possibly still be living. For the record, he is only 73. And this leads me to the shocking realization that I am using “73” and “only” in the same sentence. 25 years ago I thought 22 was old, now I making an argument that 73 isn’t that old and I think that my 24 year old classmates seem so young to me.

Be Here Now

Time is a human construct. Everything is right here, right now, in this moment. While there is a past that we should learn from and a future to be hopeful for, they are also in this moment. All that you will ever need has already been given to you. You are capable of overcoming all obstacles. And this is all happening in the Here and Now.

While this essay is my own, a nod of the head to Be Here Now by Ram Dass

Gimme that filet-o-fish.

I come by my quirkiness honestly- my mother was an eccentric woman.

I used to have a cat named Rubin, who I loved like he was my child. No really, my first husband and I actually thought of him as our child when making decisions for him, such as: “well, since Rubin won’t require a college education, we can take a small percentage of what we would have spent on college and put it towards his expensive vet bills.” My mother fully supported this idea, of a cat as her grandchild.

Rubin was also quirky. If he followed you into the office in order to “supervise” your work, happened to fall asleep on the job and wake up to find you gone, he would yowl uncontrollably until you returned to him. A friend house-sitting once snickered when I warned her of this behavior. When I called a few days into my vacation, she told me, “I totally didn’t believe you about Rubin but you were not kidding!” “I know,” I replied.

My quirky cat had abandonment issues. When Bill and I lived in Minneapolis, we were like many newlyweds: starting out our new life together with overwhelming debt (from the wedding and moving cross-country.) Because of this, I worked three jobs while Bill worked ungodly hours as a post-doc at the University of Minnesota. My mother was concerned about (her cat-grandchild) Rubin’s mental health with his parents being absent from the home so much. She decided to purchase a motion activated, singing fish to help fill his long, lonely hours. You might recall this trendy toy from the turn of century: it looked like a trophy fish but once activated, it would lift its head off the mounting and start singing this wonderfully obnoxious song.

“Give me back that filet-o-fish.

Give me that fish.

Give me back that filet-o-fish.

Give me that fish.

What if it were you hanging up on this wall?

If it were you in that sandwich,

you wouldn’t be laughing at all.”

Since everything old is new again, McDonalds has brought back the singing fish in a new ad campaign. The last several mornings I have been awoken to the radio spot via my alarm clock, waking me to the thought of the silliness that was openly supported in my family and the love I have for my Momma and Rubin, who have both since passed.

There's no such thing as a short story (in my world.)

Anyone who knows me knows that I am not able to tell a brief story; I feel the need to include background information and then perhaps background on the background info. And it just occurred to me: is my life really that much more complicated than everyone else’s? I have a hard time believing that. Why is it that Arlo Guthrie (arguably the greatest storyteller of all times) and I are the only ones who have these complicated, twisting and turning tales? So I want to throw out the request to everyone out there: include it all. I want to know all the details. While I may be the only one, I will pay attention and remember all that you tell me.

at least I'm writing, right?

Here it is, late at night, and I am beating myself up for not getting enough done this weekend. I really need to get out of my apartment if I want to get schoolwork done. Yet, in these moments great epiphanies can arrive.

I am practicing self-flagellation, which includes self-sabotage in the form of not going to bed at a reasonable hour thereby pissing even more time away that could be at least used to rest so that I can be productive tomorrow. I find myself wondering if I will ever figure out how to grow up, pondering about the nature of being a late bloomer and if this is necessarily a bad thing.

I might have also used this moment to see if an old crush was on fb. He is! Nothing like perspective to make you feel better about yourself! He lives on a boat and drinks beer (at least according to his self description.) Phew- I dodged a bullet. I might still be in school and immature (I prefer the term “childlike”) but at least I have made some type of progress in my life.

But let’s not start on “progress” (read: what the heck am I going to do 1. this summer and 2. upon graduation) as that leads me back to my downward spiral that prevents insight.

So begins my daily promise to myself: to attempt to create structure that supports me academically and emotionally. Wish me luck!

I can't help but wonder if my Dad is reading this, shaking his head. Most likely. Sorry, Dad. We can blame Mom. :)

A Child or a Choice?

While driving along today I saw a bumper sticker that read, "I am a child, not a choice." This is not the first time I have seen a bumper sticker saying this, but this one also featured a striking picture of a new born. It was very effective marketing. Even I, a dyed in the wool Pro-Choice advocate, was given pause.

I understand people who are against abortion on religious basis. If their faith leads them to believe that life is created at conception, then murder is not acceptable. Faith is one of those mysterious things that is beyond influence- for all of us, yours and mine.

My faith guides me to believe that life does not begin at conception. It seems to me that I am far from the only one who believes this; if we as a collective society believed that life began at conception then miscarriages would be addressed differently. We don’t have funeral rituals around this tragic loss; instead a miscarriage is surrounded by shame. This does not indicate to me an honoring of a life lost; instead it is treated as the loss of a potential life.

I struggle with pinpointing when life actually begins. Is it the magical moment when the heart begins beating (quickening) or when the infant takes its first breath of life? I read an excellent article in UU World by Scotty McLennan, the Dean of Religious Life at Stanford University, which provided me with concrete religious textual support for my inner convictions. I will not restate what he has already written so eloquently. I encourage you to read his article which provides Biblical scripture and Talmudic tradition to support life beginning at birth with the first breath.

With that being said, I still grapple with the issue of when life begins. I have placed my hand on the bellies of pregnant girlfriends and I knew that was a life in there- not just potential life. But would I have changed my mind had their fetus been stillborn? Would it have reverted back to “potential life” in my mind? These are questions I don’t know the answer to.

From a sociological standpoint I am very clear on where I stand on the abortion issue. I firmly believe that every child should be a wanted child. Imagine how our society would improve if everyone came into this world loved and wanted.

Pro Choice advocates love to parade out all the tragic examples of rape and incest or when the mother’s health/ life are endangered by the pregnancy. These are tragedies and I pray with all my heart that our country will never become so barbaric and backwards as to prevent a woman access to termination in these instances.

The Pro Life camp points to all the abortions that occur as an issue of convenience, because girls (or even women) who got pregnant because of improper contraception. Yes, this happens far more frequently than it should but this can be easily changed through appropriate sex education.

There seems to be a strong correlation to those who are self labeled as Pro Life and those who are against Federal social service programs and sexual education that includes the use of contraception. This strikes me as setting our young women up for failure. They are sent out into the world, unprepared to protect themselves from pregnancy (no, abstinence does not work) and then judged for a difficult choice they have to make.

Yet should they choose to not abort, once the child is born, there is no social service support for mother or child. If you are Pro Life then be pro-life. The current structure paints women into a corner and then the Religious Right complains they are there. We have to teach about contraception to prevent unwanted pregnancies. Conservatives complain about moms on welfare, but these moms are in a situation where they don’t have access to health care, child care, or family leave because they were shamed into thinking their other choice was murder.

All this cannot be easily summed up in a bumper sticker, nor do I think it should be. I believe that we trivialize this complicated issue by limiting it to either a child or a choice. I end this post with a request: please consider all life not just the one in the womb.