Posts Tagged ‘illness’

On the Road Again

Wednesday, June 27th, 2018

It is hard to believe these words even as I write them:

I am hitting the road again for a cross country road trip.

Almost three years ago I wrote the same thing on this blog and it was just as hard to believe then as it is today. A lot has changed in three years and not all for the better. I am a very different person than the one who climbed into my little Prius three years ago determined to test her horizons and welcome in a world of experiences yet to come.

When I returned from my nomadic life on the road and tried to lay down some roots of my own in San Francisco, my life was quickly turned upside-down by illness and misfortune. As I wrote about in a previous post I was struck down by a mysterious illness called Mal de Debarqumont Syndrome that has forever changed my life.

Over the last three years my horizon shrank to nearly nothing. All of the work to prove to myself how capable I was and the months of exploration that expanded my world came crashing down. Life became simply survival and I found myself fighting for even the smallest victories. I would celebrate walking the three blocks to my work more than I had celebrated driving across the country alone. My world became so much smaller and the fear that plagued me during this time left me feeling trapped in a box.

I found myself living a different type of nomadic life than that which I knew on my cross country road trip. I was rootless and floating; I drifted between one thing and the next because the box I lived within had no anchor except the need to survive.

Now I have found my anchor again: pursuing my PhD in graduate school.

I rediscovered my childhood dream of becoming a professor and writing professionally. In the fall of 2018 I will officially be a PhD candidate at UCSC in the Literature Department. This means so many exciting things to me, but one of the biggest is that I know for the next six or so years of my life that I have a home. I have an anchor that I can always return to even in the darkest of times.

Finding my anchor is only the first step along my new path. It is time to break free of this box of fear. I find myself for the first time in a long time yearn for that horizon line that used to drive me to the edge of myself.

I can do more than just survive.

So I am taking to the road again to stretch myself and push my limits as I did three years ago. Even though I have new limits and they may be smaller than they used to be, I know I can learn to break out of the bondages of my illness and learn how to live a full life once more.

I will be traveling for three months across the country before I start my program in the Fall. The first leg I will be traveling with my favorite travel buddy, my mother. There is no one in the world I would rather have as my co-pilot in both the good and the bad times. We leave in a few short days and I hope to post as frequently as possible while we are traveling. So stay tuned for more travel posts and photos!

I hope you will follow me along this journey.

P.S. For those of you wondering about what this trip means to the progress of the book I am working on, do not worry! I am taking a little bit of a break from my research and writing to enjoy the road. I will still be working, but I wanted to make time to share this experience with you all. So fear not, the good work continues and new work also begins!

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Hive Mind

Saturday, January 13th, 2018

The bees have infested my brain again
Rattling around within my skull
Like a ricochet bullet
Unwilling to settle on damaging a single target.
They fill my mind with vibrations
like a tremor behind my eyes
Like a precursor pressure
Waiting to crack open my head
When the real earthquake hits
Releasing the infestation of my mind
Upon the world that was never prepared
For this devastation that I have lived with
Everyday like a close companion
Or a haunting voice whispering in your ear
Words you do not want to hear.

The sound of silence is alien to me,
I would not know how to live without
The pressure built up behind my eyes.
Living like a ticking time bomb
Dangerous and frightening but existing
So close to death it makes you more alive
In the end, In the end, In the end
The monster you live with becomes tolerable
Because it is your monster, your pain personified
So you can give your struggle a name.
Transform your enemy into the tangible
Since a battle can only be won
When your opponent is real,
Otherwise you are fighting an endless war
Between you and yourself
Where everyone loses and the fight is your life.

I am the Queen of the hive in my mind
But my own swarm holds me hostage
Encasing me in sweet tasting honey
And lulling me to sleep with the rhythm
Of their hypnotic song;
Entranced by the foot soldiers of an army
I never chose to lead
I cannot escape the buzzing inside my brain
Because we are now two parts of one entity.
They are as much a part of me now
As a mosquito trapped in amber
Fossilized for all of eternity
A trinket of mortified antiquity;
You cannot set them free without breaking
The beautiful creation we became.

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We’re Not in Kansas Anymore…

Monday, September 28th, 2015

Literally. Yesterday I drove all the way across the width of Kansas from Colorado to Missouri. It was a long day of solo driving, just me, Mama the Llama, the Serial podcast, and corn. Lots and lots of corn.

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I drove away from Colorado with the Flatirons of Boulder in my rearview mirror and my heart in my stomach as I left behind the state I had grown to love over the last week or so. I traded in my grand majestic views for two lane interstates, the loss of beauty exchanged for ease and speed of transportation. Sometimes I think that places like Colorado have such wonderful single lane roads in order to force you to drive slower through all of the beautiful scenery, while places like Kansas and Nebraska offer speedy roadways so you can get the hell across them as fast as possible.

While I will admit, I actually didn’t hate Kansas like I thought I would, it was still a really long day of somewhat monotonous landscapes. It was still better than my old road trip nemesis Nebraska. There were at least some nice rolling hills across the state and every once and a while the sea of corn fields where swapped with some lovely fields of a red colored crop (possibly old corn?) that contrasted with the rolled hay bales resting like giant marshmallows across open fields in a rather photogenic manner. There were also some impressively large energy wind mills that almost seemed to be stirring the clouds like cotton candy as the gusty winds whipping across the open plains sent the clouds speeding across the horizon. My little prius did not care much for the high winds that kept jerking my car across the roadway like a toy.

But the journey, though long, went quickly with a few fun stops like the Kansas welcome center, the World’s Largest Easel, and the historic landmark of Brown vs Board.

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But mostly it was just me and wide empty expanses of road heading off into the flat horizon and my own thoughts. I had thought a lot about how this day would go, considered whether I would be able to make it all the way by myself or not. This was my big trial day where I was either going to be able to prove to myself that I was capable of so much more than I thought I was, or I would crash and burn. I will jump past the long anxious hours of ruminating about whether I could do it and tell you that I did. I made it in one piece and feeling fine.

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This might not seem like a big deal to most people but this was a huge deal for me. Time for some honest talk. For those of you who don’t know me and even for those who do know me but don’t know about this, here it is: I am sick. No, not sick in some horribly dramatic, I am terminal and will never recover sick, but not in a cough cough I just have a cold way either. I have been plagued by chronic pain, migraines, and unknown illnesses almost my entire life. I have some names to label my pain like Hashimoto’s Thyroiditis, Fibromyalgia, and Alopecia Areata but even they do not encompass what is wrong with my body. The baseline is this: I am an adventurer in my mind and heart, but most of the time my body physcially disagrees with me. I cannot predict or know when I will feel bad (and usually what accompanies feeling bad is headaches, painful muscles, extreme and sudden fatigue, and nausea) so I live in a constant state of anxiety about whether I will feel well enough to do the things I want to do.

Most of the time, there is no physical or external symptom that others can see so it is hard for a lot of people to understand this fear and these feelings. I have an invisible illness that even I don’t fully understand. It is unseen yet dictates most of my every day decisions and actions. This is why this road trip means so much to me as a solo adventure. I am so constantly worried about being incapable or handicapped by my illness and this is my big middle finger to not feeling well. That might be strong, but I have a lot to prove to myself and each day at a time on this solitary adventure I am learning to trust in my own abilities and stretch my capabilities.

So to drive for ten hours by myself is a huge obstacle surrmounted that has lingered in the horizon for quite some time for me. Despite how flat Kansas is, it has seemed like Mount Everest to me. This long day was my veritable mountain to climb, just to show myself that I was capable of anything, no matter my illnesses, no matter my fears.

So driving across the Missouri River into Kansas City where I was staying the night with some incredibly generous and hospitable family friends was like crossing the finish line of my own personal race. I was tired, but it was a well earned exhaustion that was soul satisfying and only bodily tiring.

I had the great treat of trying out a local Kansas City BBQ joint called Gates where your ears are constantly ringing with the sing-songy cry of “How MAY I help YOU?” as you enter into the building. It was the perfect end of a long day filled with conversations with old family friends and good food. I was only stopping for a night and would then be continuing on to Madison, Wisconsin the following day. One step closer to Michigan, one step closer to my next major stop. I am almost halfway done with my trip now, Michigan is the next major stop and I will be there for about a month and then continue onward to the East. My mind is being pulled in a thousand directions towards memories of what I have seen and imaginings of what tomorrow will bring, but all of it boils down to the road, the pavement beneath my tires and the miles speeding past my eyes. I am right where I need to be.

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