My Hero

Hello. Let me introduce myself. I am Abby. I married Travis exactly 1 year 3 months and 13 days ago and by all definitions of soul mates, we are made for each other. And starting 1 year 3 months and 3 days ago, we started the long journey of a mystery illness that is taking over my dear husband's body. We have been through more adventures than anyone wants in a lifetime, and I have written nothing down. He has become my hero in more ways than one and I feel the need to make it known how amazing he is. I realize that life is only getting crazier and it is difficult for me to find the words to what is happening, so I thought I would take time to write down more of our life here. Every time I post, I will give a health update and a reason why Travis is my hero.

Health Update: Currently, Travis's worst symptoms are extreme lack of energy, inability to sleep, hands sticking in unnatural ways for long periods of time so he can't eat/write, throat twitching (causing an inability to breathe for 5-20 seconds), and head jerks (hard to describe). The throat twitching and head jerks started about two and a half weeks ago. Two Sundays ago, we went to the emergency room when his throat was closing up constantly for a few hours with just enough break in between the attacks for him to breath before passing out. The ER didn't know what to do, except they gave him Valium and a prescription of Klonopin, which really calms down the twitches so he can breathe. The ER also found that his AST and ALT levels are at very high levels, which means something is wrong with his liver. We met with Dr. Renner, the neurologist, 3 days after we went to the ER. He is surprised at how much worse the symptoms are since the last time we met with him 3 months ago. He said Travis's symptoms have progressed to dystonia, and it is very rare that it progressed so quickly. He ordered blood tests for Huntington's and Wilson's diseases, although he feels unlikely it is Huntington's. We should get the results back in a few weeks. He also prescribed a "dopa" medicine and if Travis responds well to it then most likely it is a genetic disorder. We plan to follow up in February for another spinal tap.

Why Travis is my hero today: Today, I want to talk about his poetry. In every way, his life has been thrown upside down. He has been chipped, broken, beaten, thrown in a tornado, etc. In every way, his life has been taken from him. His dreams torn into pieces. His life is completely out of his control, and every time he gets back up he gets thrown further back. Yet, he has written these incredibly inspiring poems. At first, I didn't understand how he could write such incredible words in such a hard time. All I can say is that only a holy man can write holy things.

I was Skyping with Lena, a friend in Novokuznetsk, and she shared with me an essay by Gregory Orr titled "The Making of Poems." He says "I believe in poetry as a way of surviving the emotional chaos, spiritual confusions and traumatic events that come with being alive...Whenever I read a poem that moves me, I know I’m not alone in the world. I feel a connection to the person who wrote it, knowing that he or she has gone through something similar to what I’ve experienced, or felt something like what I have felt. And their poem gives me hope and courage, because I know that they survived, that their life force was strong enough to turn experience into words and shape it into meaning and then bring it toward me to share. The gift of their poem enters deeply into me and helps me live and believe in living." 

Travis has shared his poems with our family, neighbors, friends, even across the world to my friend Lena. Travis has given me hope and courage, that if he can write such inspired words with all the pain he is feeling, then I too can at least survive this heart-aching time of life. When I felt lost, scared, and angry this morning, I read one of his poems, and I immediately connected and didn't feel so lost. Travis has molded all the sleepless nights and created an inspiring collection of poems, The Voyage. He has proven to me that despite what life gives to anyone, we can find happiness. He is most definitely my hero today.


One of my favorite poems by Travis:

Voyage

The sails unfurl toward heaven’s gate

Stars painting fondest dream

Where thrones are built and temples carved

By God’s celestial being

 

But wave and tempest guard the way

From thieves who would deceive

Themselves and all by cheating joy

And life’s uncertainties

 

For promised waits Eternity

To free souls from death’s bondage

But navigate the waves one must

To rightly make the voyage

 

Thus stretching onward toward the goal

The sea toward heaven threatens

At times with storm, at times with fear

To teach the truest lessons

 

For giants rise from darkness’ depths

Foaming fists raised high

They beat the rock and bait the storm

Crashing down again to die

 

And lightning rips the sky in two

Piercing sailors’ hearts

Fierce danger sows the seeds of fear

But fear, new courage thwarts

 

For though the voyage peril fraught

There is One who knows

The Captain guides with steady hand

Toward home and peaceful shores

 

Thus rise and fall, adventure’s ship

Pushes toward the light

And life begets true happiness

Midst storm and darkest night

 

For with the Savior at the helm

And faith the guiding star

Joy loosens fear’s dreadful grip

And home does not seem far

 

For God, His children, leads with love

Lighting pure love’s beacon

And peacefully,  though rough the sea

Brings them home to heaven