Thursday, December 30, 2010

Reflections on 2010

I used to spend most of my time looking ahead.  Now I spend a lot of time looking back.  I'm pretty sure this reflecting is supposed to happen later in life, but with the traumas of the last two years, I've changed (perhaps into an 80 year old little lady in a 28 year old's body).

I'm not sure at what point I stop looking back to 2008.  Everything is viewed in terms of "Before the fire" (or "BF" at our house) and "After."  When I reflect on 2010, I am actually reflecting on the last two years, viewing my year through the lens of a woman whose life changed in the course of an hour.  I think back on the person I was before the fire and make comparisons.  Maybe it's because I'm immersed in writing about the fire right now.  Or maybe I really will be an eighty year old woman, sitting in my chair, talking about the summer of 2008 and the person I thought I'd become.  And instead, the person I did become.

Twenty-eight.  Less than two years to thirty.  I attended a seminar four or five years ago about goal setting.  I was a planner.  Two days of listening, of creating lists of how I envisioned my life would be.  A millionaire at thirty I wrote.  A foster mom.  On my way to creating a camp for foster kids.  One hundred items of ambition, drive, a plan.

Nowhere on that list was there "Home burns down" or "chronic illness."  I expected to be conquering the world, not quietly watching it go by.  But, you know what?  I'm not always sad about those events.  The person before the fire couldn't possibly imagine the person I was going to become.  Maybe she needed these huge life altering events to make meaningful change.

I've learned you don't get to plan your obstacles.  And worrying about potential threats does you little good because usually those aren't the things that are going to actually stand in your way.  You probably couldn't even possibly prepare for the life changing moments ahead.  And there's no use wasting energy on anything but the day, the moment in front of us.

I've learned to live in the moment.  I never thought it would be possible for ME, Ms. Five Year Plan, to stop and live in this exact moment, enjoy the laughter of a two year old without thinking about who he'd be in first grade.  I can sit and watch the birds.  Or look at the stars.  And just sit.  Who knew?!  Part of this change is grounded in fear, fear that I won't live to tomorrow, fear that some new devastation is lurking right around the corner.  And that is unfortunate because it often clouds my ability to see the absolute beauty of this moment.  But I'm working on letting go of that fear because I know that tomorrow is out of my control.

I've also learned through the last two years to let go of my need to save the world.  In planning out my life, I thought that it was my job to save everyone else from their own life and circumstances.  If I could protect them all from making mistakes, then I would have lived a productive life.  I don't have the energy to do that now, and I've actually come to believe that trying to save people from their own mistakes is actually not helpful at all.  That's not to say I don't value caring and compassion and giving.  I do very much value those things.  But I have let go of the need to save others.  And that's allowed me to direct my energy to helping in more constructive ways.

This is the week for RESOLUTIONS.  But I don't believe in making unnecessary promises.  Change doesn't happen on January 1.  For me, change started on August 25, 2008, but it is ever evolving.  I hope for a calm 2011, but I don't worry about it because I know I can only focus on today, and if life throws us another curve ball this year, I'll worry about it then.

Friday, December 24, 2010

Merry Christmas!!

(Our Christmas letter):
Merry Christmas and Happy Holidays! 

2010 has been another doozie in the Linville-Thurber house. 

Dan finished another semester of school, finally passing that pesky college algebra course!  We are expecting a Spring 2013 graduation with his degree in IT Management.  We continued to root on the Broncos in their quest to become a football powerhouse and were crushed when they lost to Nevada, but we are excited for next year’s season already.

I spent the year on heavy duty antibiotics dealing with late stage Lyme Disease.  We spent last weekend in Seattle and got the news that I can stop antibiotics.  Unfortunately, it’s looking like there may be some permanent nerve damage, so while I’m excited about not having to take meds any longer, I am learning to accept the limitations created by chronic dizziness and make adjustments as I can. 

I also published a story about our first Christmas in our new house in Chicken Soup for the Soul: Christmas Magic, which was released in October.  I continue blogging at http://lifeafterthefire.com.  I’m hoping that I’m able to dedicate time this year to establishing a non-profit to help other families deal with the emotional stress of losing a home.  It’s amazing how many plans though don’t seem to happen when you have a two-year old at home.

Speaking of Kellen, he’s becoming quite the opinionated and stubborn child.  We’re still trying to figure out exactly which side of the family he gets those genes from because I was definitely a meek and quiet child.  He started Montessori preschool in October and loves his teacher.  We love the school, and it’s proven to be a great environment for Kellen.  He makes us laugh with his language development with phrases like “Get out of here Mommy” and “Where’s Daddy’s be butt (belly button)?”  He also has quite the fascination with trains and gets out his wooden tracks at least once a day.  He likes his “ups” (hills) the best. 

We are all looking forward to an uneventful and healthy 2011. 

We hope you have a great holiday season (though this card will probably reach you at the tail end of it).  We are wishing you all a very healthy and happy new year as well!

Sunday, December 12, 2010

Our halls are decked

Christmas is such an interesting time post-fire.  It's so rooted in tradition, family heirlooms, the past.  And yet, for us, that is gone.

The ornaments are all new, with a different kind of significance.  We don't think back on generations past because the ornaments they handmade no longer adorn our tree.  Rather, we look at several ornaments and think about my mom's generous friends who gathered ornaments for our first Christmas.  Each year, I try to add more, though our tree is still quite bare.  I'm sure ten years from now, we'll be having to decide which to put up on the tree (especially if school projects have anything to say about it). 


We got a great Santa last year, sitting at a table writing his Christmas letters.  I haven't found the right spot for him, but this year, he sat on the piano, which worked ok. 

The white-glittered JOY letters sit on the red ladder bookcase in our living room and remind us of the first Christmas in our house that wasn't yet complete, a fold-up table and plastic chairs the only furniture inside.  Speaking of which, have you picked up your copy of Chicken Soup for the Soul? 

After the fire, I re-bought the photo stocking holders from the old house, but they don't work the same now.  The stairs are such a great place to hang them.  I've found this happens a lot throughout this reacclimating process.  I thought I wanted the same things I had in the old house, but they just don't work the same.  It's a bit of a struggle letting go of that desire to recreate instead of just doing what works now. 

I am having a hard time getting into the Christmas Spirit this year, but I know that Christmas morning this year will be magical.  Kellen knows who Santa is, and we read "Twas the Night Before Christmas" nearly every night.  He's been practicing Jingle Bells, and as soon as I can get a good video I will post it.  He may not FULLY get it this year, but I'm sure that his expression and excitement will be a great moment to treasure. 

Merry Christmas!

Saturday, November 27, 2010

Lyme blog

I WAS working on a switch to Wordpress, but I've decided not to because I don't want to lose my followers or blog stats.  Is that sad?!  I also get a good number of blog hits from Blogger's "Next Blog" feature, so I'm just going to keep this blog right here.

One of the features of Wordpress I liked was the ability to have one blog with several categories, but since I'm not switching, I decided to reactivate my Lyme blog that was private when I was first diagnosed.  I've copied my Lyme blogs from here and from Mommy in Chief to that blog. 

There are links at the top of the page, which makes it easy to click to the other sites.  I know I've been lax about posting on my mom blog, but it's mostly because there's not much parenting going on from my couch! 

I'm going to try to be better about posting to all three.  The new Lyme blog is Lemon and Lyme, and I'm hoping it gives me some space to explore some of the more complex issues involved with Lyme, treatment, and long-term health repercussions. 

Tuesday, November 23, 2010

A box of memories

My mom found a box of my things in a back closet of their house. They moved out of my childhood house the week I got married (actually, both of my childhood houses: mom's and dad's, were sold the week of my wedding). Mom had shipped some of my things a couple of weeks before the fire. A few more things she sent shortly afterward, knowing that I would be glad to have some of my old things. Had she known about this box, I'm sure she would have shipped it then as well. I'm kind of glad she waited.


I love my things, if that isn't obvious from this blog and from the enormous grief I felt when I lost everything. I miss being able to go into my garage and rummage through an old box and laugh about high school letters. I miss having the tangible items that remind me of moments I wouldn't otherwise remember. This small box reminded me how important it is to have these things.

Inside was a velvet rabbit that sat in my room most of my childhood. It's a perfect addition to my Christmas decor. I don't even know who gave it to me. It reminds me of The Velveteen Rabbit and my fear of loving my stuffed animals too much for fear something would happen to them. Stories have always been so real to me.


The box also contained a number of old cards, several of which were from my 16th birthday. Were it not for those cards, I wouldn't be able to tell you that I attended the Warped Tour in Boise that year. Have I mentioned how much I love cards?


I also got a number of things from my academic life. I was always a good student, and I've always been a writer. I have a sick fascination with my standardized test scores, and I loved looking over my eighth grade tests. My favorite item from the box was my illustrated Three Little Pigs booklet. I was never very good at art, and the disconnect between my creative writing talents and my drawing is somewhat embarrassing.

I spent yesterday reading through my high school creative writing journals and even being a little taken aback by my observations. I loved writing poetry then, and I am thankful to have these books to look back on.

I also have several composition notebooks for books I *read* in high school (Cliff Notes count, right?!).


And my mom found copies of my high school newspaper, where I was the editor for two years.

I am saddened about losing so many of my yearbooks, so I'm glad that she found these as well. There is nothing like compiling a list of ancient phone numbers from your friends in first grade!


And my high school graduation cap and honor cord.


I have a life of memories in just one box. And that was the box of the things I didn't think were that important, that I left with my mom because I couldn't justify sending them all over. Perspective is a funny thing. Because of the fire, everything in that box has more significance, more relevance than it would have otherwise had.

Friday, November 12, 2010

Thankful for recovery

So apparently daily blogging is too much for me. But I'm trying.

Today I am thankful for recovery.

I am not 100%, but I have continued to feel better each day. I have help so that the tasks that were overwhelming are now off my shoulders. The med adjustment in September was critical I think. One of the infections had obviously come back, and the addition of another antibiotic quickly kicked that bug down. I am still dizzy, but I'm managing that and at least have an idea that it's coming from an imbalance in my inner ear. I also have some lingering cognitive deficits, but I'm coping with those as well. I honestly feel like I see a light at the end of this tunnel. I feel like I am climbing out of the Lyme hell and getting my life back. FINALLY.

Wednesday, November 10, 2010

Flexibility

My dad is perhaps the least flexible person I know. When he had cancer, he would demand we go to the grocery store on a specific day even if he had just finished chemotherapy an hour before. It was crazy. I have never been that rigid, but I certainly have learned over the course of the last two years to be more flexible than I was before. Today, I am grateful for that flexibility, to have the understanding that decisions are not permanent, to be able to change my mind. If only we could give some of that flexibility to our world leaders :-)

Tuesday, November 9, 2010

Thankful for remembering

I forgot yesterday... again!

But I wanted to say yesterday that I was thankful for cookbooks so that I could recreate the Bellagio eggs benedict that had consumed my thoughts for the better part of 24 hours.

Today, I am thankful for our ability to remember, and share in that remembering. I am thankful for this blog, that my words have been able to reach out into a vast space and touch the lives of others, many of whom have felt lost and alone as they struggle with losses, real losses, that many cannot understand. Today we remember Roni and acknowledge her loss one year ago. It's a journey that no one should have to walk, but I am glad that we can walk it together.

Sunday, November 7, 2010

A weekend of thanks!

I didn't get a chance to post this weekend because I was on a girls' trip to Vegas. Here is a weekend worth of gratitude.

Friday- I am thankful for an airline system that is safe. As much as I hate flying, I appreciate everything that happens behind the scenes to make sure that I can fly safely around the country.

Saturday- I am thankful for great girlfriends, whether they be the ones locally, those I know through a message board who take trips to Vegas with me, or those I have met through Twitter and blogging. I love you all.

Sunday- I am thankful for Kellen kisses ("misses"). As good as it was to get away, I was so glad to come home and hold my baby and get a few kisses. I even missed reading reading "My Truck is Stuck," which I have read at least 150 times.

What are you grateful for this weekend?

Thursday, November 4, 2010

Thankful for a writing community

As many of you may know, I am working on a book about the fire. It's been a long journey, two years in the making. Today I am thankful for a wonderful online writing community, from an incredible memoir writing instructor at Gotham to nearly everyone at MediaBistro. You have all pushed me to be a better writer. I realized today that I have nearly 60 completed pages. I never would have done that without your help. And I am thankful for you.

Wednesday, November 3, 2010

Thankful for quiet moments

I am so thankful that Kellen started Montessori school and is going three mornings a week. I'm thankful for the time it gives me to reengage in my adult life, to try to put together a string of words into coherent sentences that I can then work on selling off, one essay at a time.

When the lady at the front desk asked how Kellen was doing, I responded: "I don't know. All I know is that I get three hours where I don't have to talk about trains and tractors."

Today I'm thankful for those quiet moments. They make me a better mom.

Tuesday, November 2, 2010

Thankful

The Thanksgiving after the fire was perhaps the hardest day (other than the fire) I've had in my life.

My house was gone. My face was paralyzed. My baby wasn't sleeping. I was in the middle of my first dizzy episode. And I was SUPPOSED TO BE THANKFUL?! My mother in law's tradition is to go around the table and say what we were thankful for. I asked her not to. Honestly, I wasn't thankful. I was bitter. Angry. I wanted to scream at the universe and tell it to fuck off. I was done with the challenges, the lessons, the heartache. And I didn't even know that I was REALLY sick and in for an even more challenging battle ahead. When my turn came, I told them I was thankful for my son because that's what you're supposed to say, right? I had wanted him so badly, and here was this beautiful innocent baby who I did love.

But I still wasn't thankful. I knew that having a baby at that moment made the house and the illness that harder to deal with. We had to haul a baby seat with us to meet with contractors. I had to bundle him extra warmly because the seasons were changing and had to be extra careful about how much time we spent at the build site because it was too cold, and our home had no heat. I was exhausted from sleepless nights, and I knew that stress wasn't going to help regain function in my face.

Last year at Thanksgiving we had just lost my grandmother. It was hard, and this month is a bit bittersweet that way.

This year though, I can say that I am once again thankful, that the bitterness has subsided. I'm still angry some days, but I think that's ok. I'm thankful that I allow myself the space to be angry.

A friend of mine on Facebook is posting something she's thankful for each day leading up to Thanksgiving. I'm going to join her, sharing with you the little things that make me thankful.

Today I am thankful for the people who are willing to put themselves in the public eye, to avail themselves for criticism, as candidates for elected office so that our democracy can continue to flourish. While I may have my own opinions about them and disagree (many times vehemently) with their politics, I still am thankful that they are willing to do a job many of us only ever talk about. And I'm thankful to live in a country that respects the citizens' right to pick their politicians.


What are you thankful for today?

Friday, October 29, 2010

Fire Friday- Tammy Jo's story

I am a wife and mother of three children. My son is 10, my daughter is 8 and our youngest girl is 2. We had been married nearly 10 years and bought home in 1999. My husband had changed it quite a bit and although I needed a new kitchen, I loved my home. We live in Massachusetts and my husband is co owner of a cabinet making business. We were having money troubles of course with the economy and I was trying to work and take care of the kids and school work and everything most moms do.

The night of our fire, I was folding laundry on the coffee table watching tv. We heated our home with a wood stove and had been using it for years. It was a very cold night and I even made sure to put enough wood so I wouldn't have to come down in the middle of the night to fill it again. I went to bed around 10 pm feeling confident that I had the lunches made and the laundry folded for the next day.

3:35 a.m. We hear the spoke detector beeping. It is a kind that speaks and says FIRE FIRE FIRE FIRE. We raced down stairs assuming it was the wood stove acting up. We soon discovered there was a lot of smoke in the house. Our kids were screaming and the baby was still upstairs. ( My husband build a 3 car garage with three bedrooms and a bathroom above it) My husband told me to grab the baby and he went to check to see where the smoke was coming from. (at that point, I really thought the wood stove just popped the top and smoke had escaped) As I got downstairs with the baby and the other kids near me, my husband said the smoke had filled our finished basement and we needed to get the kids in the van.

Without thinking, I grabbed the kids and put them in the car as I picked up my phone to call 911. We live in a community where there is no full time fire department. The firemen were sleeping in their beds so we had to wait for them to wake up, go to the station and get here!! We backed out of our driveway and parked down the street. My husband called his parents and while crying told them he thought our house was on fire!

We were all crying by now, watching the smoke pour out of the windows. The smoke was so thick and so black. We had our family dog in our car and she was lucky because she didn't know what was going on. We were watching our home pour smoke out each orifice and I didn't know what to think. The tears were streaming down my face and I had to try to keep a brave face for my son and daughter. My baby was just sitting in my lap. She was 5 months old at the time.

The fire department came and my husband went to the house to answer the questions they had about where our source of heat came from. By this time, my in laws drove across town to our street and got into our car and saw the five of us crying and scared. They saw my son who had already suffered from anxiety wonder what was going on. They saw my husband cry for the first time in his adult life. I suffer from Irritable bowel syndrome and I had to use my mother in law's boots to walk to my neighbors house with really bad stomach pains.

Some family members came to our car and took our kids to their home so they could get some rest and not further damage their little minds. They were after all, very young tired children who needed food, and clothing and rest.

We watched while they were slipping and sliding down the street because it was so cold outside and the water froze on the street. Our neighbor told us to get our of our car and into their home. It was at our neighbors house where we learned that everything was gone. The structure was still in tact, but all our possessions inside were destroyed. The fire started form our chimney. The person who built it did not put enough mortar between the bricks and the wood of the house. Through use and time, it was inevitable. It was not our fault, and there was no way to inspect it, repair it or predict it. We were just lucky that the smoke detectors worked.

The fire chief came to the neighbors house and took us in and let us see our home...
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pantry1.jpg
kitchen1.jpg

These pictures were taken of the first things we saw when we entered the front door. We could recognize everything, yet see nothing...This truly changed us. It changed who we are as people and has changed how our children live and react to life.

We lived in a trailer on our property for just six months, but it felt like six years. We were cramped and uncomfortable, but alive and together. We had some amazing support from family, friends, and community. We received many donations and so much emotional support.

We were forced to knock down the main part of the house and rebuild from the foundation. The garage with the bedrooms above had to be gutted out and built up again. We moved into our new home in July of 09' thanks to my husband's business and a great insurance company.
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This is our new home.
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This is one of the first things seen when coming in the front door now...

My two children and myself have been seeing a counselor since the fire and I often stay awake as long as possible to make sure we are all safe. Just tonight, one year and a half later, my son is nervous about a heater we put upstairs to keep us warm. I know we are safe. I just don't know when my body will feel safe again...
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This picture was taken May 2010. My husband Scott, baby Erica, Myself Tammy Jo, our son Matthew, and our big daughter Laura.
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Thanks for sharing Tammy Jo. I'm wishing you peace as you continue to heal from the pain of your fire.

Do you have a story to share? Email me at life_after_the_fire@yahoo.com.

Tuesday, October 26, 2010

Walking in my shoes

"You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."
-Atticus Finch, To Kill a Mockingbird

Last night, I was sitting in my oversized Pottery Barn chair in my living room, dizzy as I always am, checking my email when a comment came in for moderation on my Happy Anniversary post about accepting that life sometimes is "For Worse." It's hard to know the intent of a blog commenter, but it really made me defensive and has continued to bother me almost twenty four (dizzy) hours later.

Kathy, I do not know what your intent was, but I will say that you have not climbed in my skin and walked around in it to be able to criticize my feelings. I share with the world, or at very least those who read my blog, my feelings. You might not agree, and you are certainly able to express your disagreement, but ultimately these are my feelings.

Certainly I can agree with you that I am fortunate to live in a country where I have freedoms and (at the moment) health insurance. I have access to doctors (though not many who believe in chronic lyme disease). And I have a house that I am learning to love. I do not live on the streets. I do not have to beg for food. But does that mean that I am not entitled to say that my current condition sucks? Am I not able to look at the fact that my home burned down the day after I finished folding my son's newborn clothes and wish for it to be otherwise? Can I not wish for health and be even a little sad that I am sick? Your comment seemed to imply that because I am "privileged" (spelled with an "i" in case you were wondering), I cannot have unfortunate life circumstances. And that just isn't true.

Until you have walked a day in my shoes, stood in the nonexistent transom of a burned down home while waiting for your son's birth, until you've had your face come to a halt and no longer smile or blink, until you have watched your son learn how to smile when you could not, until you've had a PICC line placed and been happy about the fact that you were actually being treated, you cannot possibly know how unlucky I feel some days. I believe that I have walked this road with strength and grace. I've learned through the last two years that it's impossible to know how mightily an event might have impacted a person, and to always ALWAYS start with compassion. I invite you to do the same.

Wednesday, October 20, 2010

Fall

I love fall. I know I've said this before. And I'll keep saying it.

I love the crispness of the air. I love that I can wear long-sleeved shirts that cover up my PICC line. I especially love the fact that this year I can love the cold weather AND eat ripe tomatoes because of the weird spring we had. I love the pumpkins. I love the lattes. And I love the anticipation for Christmas (speaking of which, have you picked up a copy of Chicken Soup for the Soul: Christmas Magic? My story is on p. 132!).

Kellen is finally old enough to understand the concept of a pumpkin patch. We went to Farmstead this year where we rode ponies and watched pigs race and jumped on a big air trap and rode a tractor.








When we stopped to pick pumpkins, Kellen melted down because he didn't want to say goodbye to the tractor, even though we were getting right back on.





We went again today with some friends, and Kellen got to ride in a metal cow behind a tractor.







He was sad when it wasn't his turn.



And he played in corn. I didn't have such a good time, as I leaned up against a fence that was improperly secured, and I fell backwards with my feet over my head. My tail bone is royally sore this afternoon.



The other thing I love about fall is the delicious apples. I remember my freshman year of college taking an environmental studies seminar and having the local farmer bring in apples from his orchard for us to taste the varieties. I fell in love with the diversity of the apple, and while I love to eat Fujis and Galas the most, I appreciate others for different uses.

Fall also brings some sadness though, as it was a year ago that my grandmother suffered the stroke that would ultimately end her life. My grandmother's applesauce was legendary, and last Thanksgiving was the first family holiday I can remember where it didn't appear on the table next to the turkey.

Thankfully my grandmother's apple trees are still in the hands of family, and we were able to pick some apples for ourselves this year in hopes of canning apples for applesauce so that her legacy lives on. Kellen thought apple picking was great, and I am sad that it isn't an experience we got to share with my grandmother. I also hope I don't suck at canning!



I might not feel great, but it's still fall. And I'm happy for that!

Thursday, October 7, 2010

Sometimes "I do" really does mean "for worse"

Today is our four year wedding anniversary. Amazing to think it's only been four years.

Photo by Brad Hollenbaugh

** While Dan and I didn't recite the traditional vows, I'm going to reference them for this post.

It's hard for me to look at that picture, even though it hangs on my stairway, and I see it every day (just as I did when a copy hung in the living room of our old house). I look at that girl, and I'm jealous. She's happy. Life seems so full of promise. The idea that she could need someone to stick by her in sickness and through "worse" is foreign to her even though she'd already endured some of life's challenges. She was twenty four. Getting married "for better or FOR WORSE" was just something that people said. They didn't really have to endure it.

But we have.

Three years ago we went to Tahoe for our first anniversary.

Even that trip seems happy and full of promise. And yet on our anniversary, we spent the day wandering around Tahoe looking for a place to draw my CD3 fertility bloodwork. On our anniversary, I started Clomid to help us get pregnant. It didn't work.

Two years ago, we sat on the foundation of our new house feeling homeless and without the things that had been a part of our newlywed journey. The toasting flutes from our wedding were ash. The champagne from our honeymoon that we were saving for our son's birth or Dan's graduation, evaporated. My wedding dress. Our whole life was gone.

Photo by Bonnie Creevy

Last year I had just learned that I likely had Lyme Disease, and we were traveling to Seattle, where we spent one of the rainiest weekends of my life holed up in a hotel room with a child who wanted none of it.

And this year, I spend the day in bed, crawling out of my hell to go to dinner. I want to blow out my hair so that I at least look presentable, but that takes energy, energy I'm not sure I have.

Dan and I have been married four years, and our lives have been tried beyond what seems fair or reasonable. I didn't enter into this marriage thinking that I was going to put my husband through "worse." I wanted to make his life better. Instead, I feel like I've drug him through hell (with me).

I think all you can do is hope. Hope that one day we get to experience highs in our marriage and in our life that make up for the lows that we've had to endure.

Sometimes saying "I do" really does mean getting through the worst of times together. Even if all you ever wanted was "for better."

Tuesday, October 5, 2010

Chronic Disease choices

My new website has been put on a semi hold while I figure out some coding stuff. It would be great if I could do that while I'm flat on my back in bed, but reading is a challenge, not to mention comprehension. If you've known me since I was a kid, you can only imagine how difficult that is for me to deal with.

This brings me to a larger point about choices we have to make when we're sick. I remember hearing a few years ago someone talk about the reality that when we say "yes" to one thing, we say "no" to another. That isn't any truer than when you are sick.

Some of the choices I have to make each day:

- Whether to go to bed early or read to my son at night. I have a portable IV pump, which was supposed to make this a moot point, but after the night when I had a line full (yes full) of air, I decided the best thing was to stay still during my infusion. We put Kellen to bed, and then I start my meds, which means I finish after 10.

- Coffee or extreme fatigue. Kellen gets up between 6 and 7 every morning. Since I don't finish infusing until after 10, I often am awake until close to 11. I'm lucky if I get eight hours of sleep. Dan goes to school, and then I have Kellen. He's taking swimming lessons, so my only real option if I'm going to survive the morning is some form of caffeine. I have stomach problems so this only complicates those. It also means that I likely won't take an afternoon nap, even though I should.

- Pain or well, pain. Speaking of stomach problems, I get to choose between the types of pain I get to experience each day. I have chest wall inflammation (pleurisy in medical speak). I went to the ER several times for chest pain before I learned what was wrong. Advil pretty much reduces the inflammation so that I'm no longer in pain (at least that way). But if I take Advil, I risk stomach pain and causing further damage to my GI tract.

- Sugar or no. Because of the systemic overload of bacteria, a lot of lyme patients have trouble with things like yeast overgrowth, and as a result are encouraged to eat a low carb diet. The problem for me is that not eating sugar has led to hypoglycemia, which causes dizziness. I'm already dizzy enough, TYVM. I am currently on the "fuck-it-diet."

- Pixar or Bravo. I would just like to thank Pixar for creating such brilliant kids movies. They are actually quite enjoyable for adults. As much as it saddens me that Kellen watches so much TV, some days that's how we survive. We have already decided that Kellen will be getting more DVDs for Christmas because I know nearly every word to Cars. I'd love to find Lion King (though I think it's in the "vault"). We're also looking at Ratatoille and Aristocats. I'd love other suggestions. I used to have a great disney collection, but they are no longer in existence! (The movies we do have are Cars, Up, Nemo, Shrek (all 3), Toy Story, A Bug's Life, Tarzan, Happy Feet.)

--
On another note, several blogging friends have asked what they can do to help. I've been thinking about that, and I think the greatest thing would be cards. There is something about opening the mail to find a personal card that brings a smile to my face. It reminds us we are thought of. I used to have a large collection of cards, which burned up in the fire. I've been trying to decide if I should post my address or get a P.O. Box. Our address has been so publicized that I don't know if publishing it again would matter much. But I'm also a little nervous about doing so. More details this week. Thank you all for caring. The support I've gotten in the last couple of days has been overwhelming. Thank you.

Monday, October 4, 2010

It's not enough to just be alive

I apologize if the title is shocking.

I've been reading this morning more tales of Lyme and re-watched the trailer to Under Our Skin (which used to be available online but apparently isn't anymore).

Someone said it isn't enough to be alive. Oh how that resonated with me this week. There was a time where simply being alive was enough. I could appreciate the pleasantness of life just simply by being.

That's not enough.

Just being is too painful. My body hurts, my head spins, I feel exhausted both physically and mentally. Living for the sake of living is not enough for me. I have to find other reasons to live.

I was talking recently to another Lyme survivor on Twitter about good and bad days. She said something about counting the moments not the days or the weeks. That phrase has changed my life. I certainly am not yet able to count good months. I am barely able to count good weeks. I can sometimes count good days. But I can always count good moments. I am so used to quantifying my life more globally, so each day was good or bad. And when I strung bad days together one after the next, my life seemed pretty gloomy. Let's be real, it is pretty sad.

But no matter how bad my day is there is ALWAYS a good moment that interrupts the bad.

It might be Kellen giggling with me when we are singing on the couch. Or lying in bed with him asking to read the "Be Butt" book (belly button). There is joy in picking the ripened tomatoes off the vine or walking out to the mailbox to find an unexpected card.

This illness has made me painfully aware of how those moments can save us from our pain, our suffering. It's no longer enough for me to just be alive. I have to live in those moments, stringing one second of joy to another in hopes that I will create a necklace of days that turn into weeks and eventually into months.

Sunday, October 3, 2010

Letter to friends and family: Lyme disease

Has it really been over two weeks since my last post? Time just seems to melt, one day into the next into the next. Several of my symptoms have returned, and it was all I could do to hold it together for Kellen's birthday party. I'm now recovering from that day even though it's over a week later.

Last night I came across a post from Infectiously Optimistic with a letter to friends and family explaining her Lyme disease and the struggle she endures day after day (please read this if anyone you know suffers with chronic illness. It's really beneficial). I have been struggling lately with how to ask for help from those closest to me. As someone who finds care giving natural, I have a hard time with needing to directly ask for the support I need. I feel like I shouldn't have to explain how to care. But I'm learning that those expectations only breed resentment if I'm not clearer about my needs.

I'm borrowing some of the language from that post in crafting my own letter:

Dear Family and Friends:
I have late stage Lyme Disease.

"Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.

"I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:

"The way Lyme Disease is currently being handled is much like the way AIDS was handled when the AIDS epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDS in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDS. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDS epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.

"I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.

"When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body.
"

I do not know when I was bitten by a tick, whether it was the bite in Virginia when I was ten or whether it was a bite when I was pregnant. I've struggled with bizarre medical issues since I was young and have had bouts of extreme fatigue that were inexplicable. But those episodes seemed to be controllable.

After having Kellen, my face went paralyzed, Bell's Palsy, seemingly benign. If I had known then that I had Lyme disease, I could have been treated with antibiotics and hopefully gotten better quickly. Instead, I was prescribed steroids, which is actually devastating to a Lyme patient as it provides an environment ripe for bacteria replication. Because of the fire, my diagnosis was even further delayed because it was easy to assume my symptoms were a stress response or related to my PTSD. Each day from November 2008-September 2009 I continued to get sicker and sicker as the bacteria ravaged my body, most notably my nervous system with profound dizziness, light sensitivity, peripheral neuropathy, shooting electric shock pains down my arms, migrating joint pain, muscle pain, and fatigue merely from waking up. In that time, I probably had thirty healthy days.

Lyme patients are often written off as head cases, merely imagining their symptoms. Why anyone would imagine this hell is beyond my scope of comprehension, and if you knew how badly I felt on a day to day basis, you would never accuse me of hypochondriasis or pretending to be sick for attention. By questioning my diagnosis, you create even further isolation when chronic illness is isolating enough.

Despite the pain in my body, I have continued to try to live something resembling a life. I know to some of you it seems that I am wallowing in self-pity, eager to share my pains with anyone who will listen. You don't see the strength it takes for me to get out of bed and take care of my son. There are days where my only goal is to be able to cook dinner. I endure great pain to live half the life that I imagined I would live at 28. When Kellen goes to the Little Gym, I experience increased dizziness because I'm so sensitive to light and noise. But it's important to me that he not sacrifice because of my illness. We have people over for football games because we enjoy it, and yet the energy I expend cleaning my house and cooking takes me several days to recover from, nevermind the dizziness that comes along with the noise. I can no longer do so many of the things I love (like reading and scrapbooking), so any activity feels like I've crossed the finish line of a marathon.

I know there are many of you who feel that we are neglecting you. My entire day is focused on surviving to the next day, and I'm sorry if I have hurt you or otherwise not been engaged in your life. It is not because I do not care (and I need to remember that just because I haven't from you that it is not because you do not care). As the other blogger noted: "A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you." And because of my illness, I am no longer engaged in normal everyday life with you.

There are also family members who don't understand why we don't make the effort to come over (more). They don't realize that there are days where simply getting out of bed requires incredible effort. I have to give myself an IV infusion everyday for two hours. I have to take my medicine out of the fridge one to two hours before my meds start. While you might not mind my infusing at your house, it feels like a hassle to bring my supplies with me, not to mention the inevitable reality that I will need to drive home connected to my IV. Additionally, if we are at your house, I have to spend more time corralling my son and making sure he doesn't break something or hurt himself. Ultimately it's just so much additional effort for me to go anywhere that we just stay home. On my good days (and hopefully weeks), I'm trying to make up for two years worth of projects. The reality is that I still have yet to fully move in to our house because I've been sick for so long. As I've said many times, we are more than happy to have you over as long as you don't mind the clutter that seems to overtake my house.

The doctor of that blogger said that this disease takes a village to overcome, both in terms of medical professionals and support. She says, "I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone." I know that I cannot beat this alone, both mentally and physically. I know that learning to ask for help is only one small part of my long journey in this life, and I am continually reminded that I need to seek out the support I need. I need you as a part of my village if I am going to come out of this on the other side.

Things you can do to support me:

- Educate yourself about Lyme disease. This is a very controversial disease, but I trust my doctor. No one would question me if the doctor said I had cancer. Please don't question this either. The doctors and patients are, in a way, unlucky to be at the forefront of this disease (possibly a major epidemic) because there is just so much that is unknown and treatment often feels like an arrow flying through the air in a dark room just hoping to land on the target... and if you're especially lucky the bullseye. The documentary Under Our Skin is a great start as is the book Cure Unknown.

- Don't assume that because I've had good weeks that this week is a good one. The worst weeks I've had have followed some of the best weeks because it's so mentally draining to have a bad day after so many good ones.

- Reach out. Chronic illness is, as I said, very isolating. The loneliness only enhances the depression that comes along with this disease. While I may not have the energy to go out to lunch or even get coffee, I need friends, whether you call or come over and hang out for a bit.

- Leave out the puppies and rainbows stuff. Positive thinking is great, but my sharing with you how badly I feel isn't negative thinking. It's just my sharing my struggle with you because I am trying so hard to get you to understand the pain I'm living with so that you don't think my laying on the couch is laziness or made up. I don't need you to tell me to think happy thoughts. If you do, I promise to annoy the heck out of you one day with the same rainbow up the ass crap, and I don't think you'll like it!

- Dinners. Evenings are especially hard for me, so having some frozen meals would be helpful.

- Other household help. Simply doing laundry takes an enormous amount of energy, much less weeding as my meds cause sun sensitivity. Any help is always appreciated.

- Patience. I do believe that I will get through this and get to experience health again. In the meantime, please be patient. If I'm short with you, I don't mean to be. I just don't feel well. If I cancel plans, please know it's not personal. If I don't call for months, I promise I still care.

This journey is hard. But I know I can't do it alone. I need you.

Be well.
Brooke

Thursday, September 16, 2010

Status of Life After the Fire

I know you've heard this from me before, but it's actually going to happen soon!

Life After the Fire is moving. I've copied all of my blog posts/comments to my new site. It's currently functional. It's just not ready to launch yet. I'm a perfectionist, and I'm not ready for its debut.

For those who get my blog via Google reader or some other subscription service, you will need to resubscribe at the new site. Because I have combined my blogs, I'm working on making sure you can subscribe to one or all of the blog types so if you don't want my rambling thoughts on motherhood or Lyme disease, you don't have to get them. I'm not certain about this functionality though at the moment.

And what about Life After the Fire? That's actually the most exciting part, I think. I haven't been able to incorporate as a non-profit yet, though that is on my list of to-dos for the fall/winter. In the meantime though, this will become a major website focused on information for fire survivors. I'm hoping it will offer practical information about immediate needs as well as answers to insurance questions and a large section on emotional trauma and healing. I know that in the long run it's not something I can do alone, and I'm hoping to see this project grow over the next several years. If you have expertise that you would be willing to lend to this project, please contact me at life_after_the_fire@yahoo.com. I also would like to continue to post others' fire stories, so continue to send those in.

Stay tuned over the next couple of weeks as I get ready for this transition!

Sunday, September 5, 2010

College Football weekend

One of the things I love about living in Boise is the fervor around the Boise State Broncos. I've always rooted for BSU and can remember sitting in a hotel room the night before starting college in rural Virginia watching BSU upset Fresno State when FS was considered to be the BCS buster of the year.

And now that Dan is a student there, it makes being a fan even better.

In honor of the game, a family photo:

Sunday, August 29, 2010

Why we remember

Today is the 5th anniversary of Hurricane Katrina.

I feel a kinship with those in New Orleans, both because of our loss and because our traumas fall within days of one another. I know that there are very stark differences about the hurricane and our fire, but I think on an individual level, the loss of one's home and the struggle to reclaim it is very similar. The natural forces element binds me to that event as well.

I am sure that there are those who are tired of hearing about New Orleans (especially if they listen to NPR). I have to admit to having my limits as well. But I think remembering is important. I assume that we will hear less and less as each year passes with mentions at the major anniversaries.

I will be honest and tell you that the hardest part of last Wednesday wasn't the remembering. It was the being forgotten. Granted, I wasn't sorry to walk out of our house to see TV cameras towering over the power lines. But I still wanted to be remembered, especially by those closest to us.

It's only been two years. Seven hundred thirty days. I'm finally entering a phase of acceptance (probably because of the intensity with which I'm writing about it). But it doesn't mean I've forgotten. Or that I ever will. August 25 will always be a life-changing day for me. And I mean that in the least hyperbolic way. Dan and I might not be in Boise anymore had the fire not occurred. It is likely we wouldn't be living in the old house. It is possible that I wouldn't be sick. So many things changed in those few minutes it took the fire to consume our home. And I will always find time once a year to observe that.

Beyond my own very personal reasons to remember, there are bigger issues involved in remembering. We remember Katrina so that we learn the vast lessons that presented themselves that day. We remember the fire so that we can discuss fire wise policies like land maintenance, ranching rights, fire-safe home construction. We remember the fire so that when a smaller fire happens, there are resources available to help those in need (like the website that I will be developing this fall). We were, in a way, fortunate because of the magnitude of our fire. We had support and resources in a way that others with individual losses don't.

We also remember to heal. Telling our stories is part of that process. If you listen to any of the coverage about Katrina, it's not just a newscaster telling the story. It's those who were there sharing, exploring, discussing. Healing.

I know that for many, it feels like we should "move on." I will never move on and forget. August 25th is the defining day of my life, bigger than my wedding, bigger than Kellen's birth, bigger than my overcoming Lyme disease. And I will always remember.

Wednesday, August 25, 2010

Two years later

August 25.

It's been two years.

Today is also the first day of school, just as it was that day. Kids once again don their backpacks, their hair done up just so with their brand new clothes still free from dirt. Parents line the parking lot, say their good-byes, maybe even shed a tear or two. I wonder if I would still be teaching...

Two years ago today I sat in a quiet classroom, creating accommodation sheets for the gen ed teachers with students on my case load. I walked through the hallway with a smile, watching the moms and dads accompany their kindergartners, thinking about that day five or six years down the road when Dan and I would do the same for Kellen. I wondered if he would be at Riverside as well and whether I would still be teaching there.

I got a massage after school, my back in so much pain from the pressure Kellen exerted on it. And yet, all felt right in the world.

Until 6:00.

I will never forget seeing smoke while driving home and the insta-panic that set in. I will never forget the knowing I felt in that moment that my life was going to be forever changed, even though our house had yet to burn down. I will always remember telling Erin that I had "five minutes left of hope" before Dan called back to tell me that our house was gone after he asked a policeman to find out.

You don't forget the details.

I still know what exploding propane sounds like. I know how the air smells when all of your memories have been consumed by it. I know how invisible shards of fiberglass feel when they slip down into your lungs. I know what it feels like to step on a foot of ash, crushing the things you most want to find. I know the difference between salvageable and recognizable. I know the joy of finding a charred pearl in the ash, even though it will never be worn again.

Two years have gone by, and yet I still can transport my mind back to those minutes, those hours, those days. It can't possibly have been two years.

And yet, in two years, I have grown up, changed. Like my new house, I am stronger, reinforced, maybe even more beautiful inside. As the new house settles, I too feel more settled in my new life, adjusting each day to the changing rhythms of being. My house has a few cracks in the wall, as do we all, some more visible than others. But I've realized that loss often gives us an opportunity to rebuild, creating a stronger foundation along the way.

I still wish I could undo the fire, recreate my old house, sit on my green microfiber couch watching my twenty-seven inch television. But I recognize that we don't always get to choose our paths, and it's not about wishing or wanting or expecting things to be different. In the last two years I've learned that your only real choice is what you make of your experiences... good or bad.

Thank you for joining us on our journey.

Sunday, August 22, 2010

Lyme update

As you know, Dan and I flew up to my doctor in Seattle a month ago and had the PICC line placed so that I could start receiving IV antibiotics.

I've been on some version of antibiotics since late last fall, first killing Bartonella and then working with a combo of drugs to attack the Lyme bacteria.

A year ago, I had no idea why I was sick. Each month brought with it an unknown set of new symptoms. I would cycle through the month with a flare up every 35-ish days. I often predicted when I would get sick again because the cycles were so regular. No one wants a diagnosis like this, but at that point, I just wanted to know what the hell was wrong with me!

I have had several people question whether I was legitimately sick and then a few more question the Lyme diagnosis since it is far from fool-proof. But a year later, I have to say, I feel SO much better and am so thankful for the doctors who risk their licenses to treat this disease. I may not be 100%, and I certainly still have some neurologic deficits, but compared to a year ago, I am so much healthier.

The shooting electric shock pain is gone.

Where I used to be tired from doing nothing, I now am only tired from doing. I may still get more easily fatigued than I used to, but at least I can be somewhat productive. (And this week has been a record for energy I think since before I got pregnant TWO AND A HALF YEARS AGO!)

My joints feel much better and are only stiff momentarily in the morning.

The all-over body pain is gone.

I still get dizzy, but it's becoming more and more related to over-stimulation and florescent lights, as opposed to just being dizzy because I'm awake.

I still forget how to spell words sometimes and can find myself lost in a conversation. My eyes still get tired. And the Bell's Palsy isn't fully resolved.

But I am better, and that's a reason to be optimistic that I will make a full recovery!

Friday, August 20, 2010

Writing and writing

I've been writing away, nearly everyday since we got home! I have forty cohesive pages, which is the most I've ever written of a straight narrative. I'm a bit proud of this, and I'm hoping if I keep up this pace that I will be ready to submit the proposal to an agent this fall. I've also entered a non-fiction writing competition, the finalists being announced on Tuesday. It's a day before the two-year anniversary, and it would sure help make me less sad on the 25th. I'm still not sure how we're going to mark that day.

Here's a little bit of teaser writing from the pages I've been working on:

While many had been evacuated, some were allowed to return to their home, sleep in their bed, be thankful they were spared a fire that could have leveled an entire neighborhood rather than a few houses in it. I wondered how different their lives would be if the wind had been blowing more southerly. I would be sitting in my house, curled up in my bed, feeling sorry for the neighbors down the street. I would be wondering how to help as I tossed my trash into the can and hauled it to the street.

But the winds hadn’t blown in their direction, and the fire had burned my house with my unborn son’s nursery. Whereas earlier in the week I had criticized the overgrown lawn and dandelions, I now envied them. I didn’t even have weeds to return to.

Tuesday, August 17, 2010

Chicken Soup publication

While on vacation, I got final notice that my story about our first Christmas in our new home without carpet or paint will be published in the upcoming Chicken Soup for the Soul: Christmas Magic.

I will be receiving a few free copies and will be hosting a few giveaways for signed copies leading up to Christmas.

In the meantime, check out the post of pictures of that magical day.

And head over to Amazon to pre-order a copy:

Saturday, August 7, 2010

Sea salt and gasoline

I stepped off the plane into the thick, humid air.

Home. Virginia Beach.

This place has a story; it knows mine. If we drive to the rec center, I can point out the spot in the woods where I kissed a boy, though I wouldn’t tell him it was my first. I can show where I was warned during driver’s ed when I forgot to yield when making a left turn. I can navigate the streets to my old home with precision, instinctively knowing when to push a little harder on the accelerator and when to back off and prepare the break.

Even though I’ve been gone ten years, I immediately recognize the cadence here.

I know the way the grass rises out of the bay. I recognize the sea salt that hangs in the air and settles in my pores. Salt water and gasoline is the smell of my childhood. Those on boats seem unaware that you could even live in a place where water isn’t part of your daily life, where bridges don’t dictate traffic decisions.

We ate at the local oyster bar last night. A twenty minute wait that would have annoyed me in Boise doesn’t faze me. Anything to be surrounded by the noise of a Friday night on the bay sitting on a picnic table eating fresh oysters that seem a little plumper, taste a little richer.

I watched the pink sunset behind the cumulous clouds and forget the thunderstorms that seemed imminent only hours before. Watching the sun set sitting on the bay has been a ritual since I was in high school. Whenever I get anxious, this sunset is what I return to in my mind as I ask peace to settle back into my soul.

I do not live here anymore. I may never live here again. But it will always be my home. This is where I grew up and returning here is like returning to a forgotten dream.