The Story

Before last night, I had not heard "The Story" by Brandi Carlile. Nor did I know Sara Ramirez, who plays surgeon Callie Torres on ABC's Grey's Anatomy, was a Tony award winner. As I watched the Grey's episode "Song Beneath the Song", I was deeply moved by Ramirez' powerful performance of "The Story" in the final scene. My husband walked into the room to find me in tears, scribbling the song's lyrics on a scrap of paper.

"All of these lines across my face tell you the story of who I am. So many stories of where I've been and how I got to where I am, but these stories don't mean anything when you've got no one to tell them to. It's true. I was made for you."

How does one capture the emotional and physical journey of years of chronic illness; illness that ages bodies well beyond their time? Years of misdiagnoses? Years searching for answers? Lost careers? The fights to save lives? Years of treatment? Hope on the horizon? In my mind, "The Story" captures all beautifully. Both versions are available on iTunes.

The Story

lyrics by Brandi Carlile

All of these lines across my face
tell you the story of who I am.
So many stories of where I’ve been
and how I got to where I am.

But these stories don’t mean anything
when you’ve got no one to tell them to.
It’s true…I was made for you.

I climbed across the mountain tops.
Swam all across the ocean blue.
I crossed all the lines and I broke all the rules,
but baby I broke them all for you.

Because even when I was flat broke
you made me feel like a million bucks.
You do.
I was made for you.

You see the smile that’s on my mouth.
It’s hiding the words that don’t come out
and all of my friends who think that I’m blessed
They don’t know my head is a mess.

No, they don’t know who I really am
and they don’t know what
I’ve been through like you do
and I was made for you…

All of these lines across my face
tell you the story of who I am.
So many stories of where I’ve been
and how I got to where I am.

But these stories don’t mean anything
when you’ve got no one to tell them to.
It’s true…I was made for you.

The Solo

Imagine you are thirteen. Lyme spirochetes have invaded your spine and you are living each day with severe pain. They've also invaded your brain making it difficult to remember. You're wrestling with horrible headaches. The new medications are working, but your body is experiencing deep fatigue as it works to handle the infection and dying bacteria. You are herxing, causing symptoms to flare. You want to stay in bed.

But remember! You are thirteen. You're in the eighth grade. Singing, dancing, band, musicals, family, friends, school and teachers are your loves. They're the reason you pull yourself from bed each day, even the days that are the hardest you've yet to face. And then, of course there's the solo.

A solo in a band that has received straight ones for the past thirty-five years. Festival is fast approaching and your solo continues to be a challenge. You play the oboe. You're wrestling with reeds. Your best one gives out one day in rehearsal, right in the middle of your solo, shaking your confidence. Your parents send for more, but they're held up in a snowstorm for several days. They arrive just before the pre-festival concert. The bands combine and you're now playing with even more peers. Stress builds even more. We all know how stress affects Lyme. It becomes even harder for you to function. Your mother is questioning her own decision years ago, to encourage you to play the oboe.

You are strong. You don't give up. Your directors continue to inspire and help you. A dear friend comes over before school for more lessons. A wise director tells you the band's rating will not be affected by your solo. The new medication starts working its magic. The cranial-sacral massages are lifting you out of the pain cycle you are in. You play well at the pre-festival concert in front of the parents and your confidence grows. For the next two weeks, you continue to work. You add vibrato and on the day of the concert, the notes bring tears to the eyes of those who love you as they think of all you've accomplished. What you've overcome.

Then the judge steps in front of the audience to talk with your band. He asks you all to look at measure 19 in the second piece. "Where is the oboe player?" he asks.

Hearts skip a beat. You raise your hand. He asks the others to musically step out of your way. He wants your notes to carry through the auditorium, at the same time reassuring you that he could hear you the first time. He wants the piece to be even more beautiful. You play it through again.

Today you learned the joy that can be gained when you face your demons. By daring to dream, you had the courage to soar. You are such an inspiration!!!

A great day!

On 2-11-2011, as Egypt celebrated, I was quietly celebrating what would become one of my best birthdays ever! Our daughter and her science teacher invited me to the classroom to teach a chemistry song, a former student of mine had written years ago. I hung out for a bit of their lab before heading to a wonderful lunch with the dearest of friends. I mixed a gallon of slime for the school carnival and it was there I received my third amazing present!

Three years ago, the carnival was too much for our youngest. She walked into the gym and was completely overwhelmed by the people, the games, the noise. In panic, she asked to go home. With much encouragement, she played the Plinko game in the farthest corner. Two years ago, after her recent diagnosis of cerebral Lyme disease, she missed carnival altogether when she was downstate for a picc line. Last year, I was downstate for treatment, so it was pure pleasure to watch her completely embrace this year's carnival! She had the confidence to play games with friends, have her face painted, won a goldfish coupon when she tossed a ping pong ball in a bowl, and even mustered the courage to do the cake walk until she won. Only I needed to sit and rest. She continued strong to the end. She was so excited and on the way home declared it, "One of my best days ever!"

I have to say, though I was completely spent and rested much of the weekend, it was truly one of my best birthdays, too!!!

Strength, Peace and Grace

Winter is always harder for me. I love it's beauty, but the cold weather brings increased pain and a flare in symptoms. Sleep, medications, cranial-sacral work with acupuncture, a FAR infrared sauna, and a gluten free diet have been my allies in the battle to maintain the ground I've gained.

Our daughters are fighting their own battles. Our 13 year old is wrestling with the pain of arthritis in her spine as we wrestle with how best to help her. Our 8 year old suffered more hearing loss a few weeks ago. Was it the result of drug ototoxicity or a respiratory infection? By waiting a bit to write about this, I can also report that she has regained some hearing. Ototoxicity does not appear to be the factor and she has returned to the drug that was helping her greatly, with careful monitoring. Medication adjustments for both girls brought new herxes and our journey continues.

The chronic Lyme journey brings difficult decisions. Do the benefits of a medication outweigh the risks? Which is more important, sleep or physical therapy; sleep or homework? No book helps you field statements like, "Mommy, I don't understand. When you're not feeling well, I always let you lie down, but when I'm not feeling well, you send me to school," uttered on her first morning back after missing a week of school for a respiratory infection.

My daughter did make it to school that day, after I reminded her how very brave she is.

Sometimes life is messy. It's difficult. We do our best and celebrate the blessings. Wishing you strength, peace and grace as you face life's challenges.

The Power of Caring

Recently, I have found comfort in cranial-sacral massage and acupuncture. As I lie on the table, soft music playing in the background, the experience for me is quite spiritual. I have been sick for so long, I feel as though my body has come to know that as its natural rhythm. During each session, I feel my body is gently wakened to a balanced state. I am reminded of how it should be. I am at peace, my breathing easier and I often sleep deeply after a session. In the few days that follow, I feel a boost in energy. I imagine medications working more effectively. It is not permanent. I schedule two sessions a month.

For those of you who have not experienced acupuncture, the needles are tiny and many pokes are nearly painless. A few are bothersome, but the sensation disappears within minutes as endorphins, the body's natural pain killers, flood the area. Once the needles are in place, I rest. The needles are removed and my session concludes with a cranial-sacral massage; the gentlest massage of the cranial region at the base of the skull and the sacral area of the spine.

Our youngest has experienced three sessions of cranial-sacral massage without acupuncture. Each time, she has fallen into a deep sleep during the session, breathing as easily as I've ever seen her. She feels disoriented when waking, though the time has decreased with each session and it no longer frightens her. Her last session, she ran ahead of me to her appointment, in the door before I. It helps that we place ourselves in the hands of one of the most caring and gentle women I've met when we walk through the door. The visits have been a blessing, but became even more precious when our daughter noticed I was struggling with a headache a few days ago.

"Mom, would you like a caring massage?"

She gently took my head in her hands. My heart melted. Last night her older sister was hurting. Her solution? Another caring massage, remembering each soothing detail as she administered comfort. Her sister went off to bed with a smile on her face. We all did.

This Thanksgiving, our family is grateful for the gift of caring shared by so many who have touched our lives. When it comes to Lyme disease, it often takes courage to care, and to those who have the courage to make a difference in the lives of others, we are especially grateful! Wishing you and your family a blessed holiday!

A Vacation

The idea came as we were returning home from another round of appointments. Some of our symptoms were weighing heavily on my mind, but with each passing mile, I was calmed by the golds, oranges, pinks and reds that paint the roadsides in a northern Michigan fall. Grammy and friends had enjoyed a color tour earlier in the week. Were we up to a similar trip?

For the past eight years, our road trips have been reserved for appointments. As a casualty of our seemingly endless medical sagas, I realized our daughters had never been to Tahquamenon Falls, a few hours north. The girls are pros at travel and I bounced the idea off my husband because he would need to help with driving. Falling leaves prompted our decision and he spent extra time on homework yesterday, making the idea reality. This morning we headed north. Even our Border Collie was excited at the prospect of a sunny day spent together.

The girls' enthusiasm when crossing the Mackinaw bridge bubbled over, making us both smile. We stretched our legs at the Cut River Bridge, and our youngest exclaimed, "I've never gone across a bridge where it wasn't to go to an appointment! Today, it is like a real vacation because I can just have fun!"

Bless her heart. Miles passed as we sang songs from GLEE, soothing a few rocky moments.

Today we took a vacation. A vacation from school, demands of home, and Lyme. We thrilled in the gorgeous colors of fall and the wonders of the Upper Peninsula. For my husband, it brought back fond memories of a biological sampling trip years ago. For me, memories of trips to Michigan Tech. For our daughters, our mini vacation provided the wonder of possibility. Special memories were created for all of us!

It felt so good to capture a bit of the magic of living, the joy reflected in our faces. What a blessing to have traveled this far in our healing so we could enjoy today! Never has the importance of living in the moment been more clear to me. Wishing you a wonderful magical fall and sending you our very best!

A Birthday

Thirteen years ago today, I woke to contractions. I was 34.5 weeks pregnant and scheduled for a hospital visit and pre-registration later that morning. We met my ob-gyn at her office beforehand. I still remember her words, "What do you think?"

"I think we're going to have a baby, today."

My son had been born 9 weeks prematurely. Doctors tried to stop the contractions without success. This doctor was hopeful my contractions would stop. She sent us to pre-registration at the hospital, asking them to check me again at the end of the visit.

We were given a quick tour by a very nervous receptionist. My water broke at the end of the visit and we were quickly moved into the room we had just toured. I was going to have another preemie.

There were several complications during the birth, the most dangerous being the umbilical chord was wrapped around our daughter's neck not once, but twice. Each contraction would be bring a slowing heartbeat. Enter high doses of Pitocin and I dilated from 3 cm to 10 cm in 20 minutes, avoiding a C-section by minutes. Our daughter arrived, weighing just 4 pounds 4 ounces, tiny and blue. Yet, like Kate DiCamillo's tiny mouse, Despereaux, she was "born with eyes open." My husband and I will never forget when she turned her tiny head to look directly at him the first time she heard his voice outside of the womb. The bond formed at that moment was a bond that will last a lifetime.

She was unable to maintain her own body temperature and her heart rate was of concern. She was rushed to the neonatal intensive care unit, her home for her first week. Doctors discovered a reflux that affected both breathing and heart rate and she would go home with a monitor that weighed nearly as much as she. It would be her guardian for the first year of her life.

The reason for my premature births remained a mystery. I did not drink or smoke. I ate well and exercised. I was not severely under or overweight. I was told that if we chose to have a third child, it would be a preemie. The doctor was right. Nearly five years later, our youngest entered the world, at almost the same age as her sister, weighing just 2.5 pounds. It would be many more years before we would learn the reason for the premature births. I was fighting a chronic bacterial infection. I had Lyme disease.

It has been well documented in scientific literature that the Lyme bacteria, Borrelia burgdorferi, can cause miscarriages, premature births and still births. Transplacental transmission has also been documented and we are convinced both of our daughters have been fighting this disease since birth. I would love to see Lyme tests for mothers and infants after unexplained premature births, though I wish we had a better test, knowing that the current test would potentially miss many.

On this day, we celebrate our daughter, a beautiful young woman, who brings so much joy to those who know her. We give heartfelt thanks to the fabulous doctor who saved her life at birth and to the fabulous doctor who has given her a new lease on life as she continues to fight Lyme and its co-infections. We are blessed beyond words.