Disabling Life Autopilot

I have found this post difficult to write. Not because I don’t have incredible things to say about 2012, quite the contrary. It’s that I don’t believe I have fully digested the lessons of 2012.

I didn’t realize I had been gathering fuel for this project for 6 year, and all I needed was ignition. That spark came Dec 13, 2011. I received an email from Susan Mees from WEGO health.

Dear Marissa,

I’m writing to let you know that you have been nominated for one of our 2011Health Activist Awards by someone in your community. The first-ever Health Activist Awards will recognize Health Activists for the great things they’ve accomplished this year. Your nomination has put you in the running to win an Award. Congratulations!

An award? Wow. At that point,  I had seen the blog as a personal diary. No one in my life had willingly sat me down and wanted to hear my version of how my health derailed my life. Sure, I saw a few therapist, but that was me reaching out for help. No one had reached out in the way I had needed them too. I was on autopilot, driving on the wrong side of the highway, praying for a head-on collision and no one knew it!

wet road

photo: freedigitalphotos.net

The blog became my mentor. I wrote, it didn’t judge, and I wrote some more. I didn’t have a direction for the blog, or want to turn the blog into an affiliate money making machine! LOL. I needed this blog. I envisioned one spectator out there that was interested in hearing about my story. I wrote to that one witness.

I was fully engrossed with MYSELF!

I only saw MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

I was growing and purging emotionally in 2011, but something was missing! I had no clue how to turn off the cruise control of fear. I had worked myself through the stages of grief with assistance of a therapist, but I was AFRIAD! NOW WHAT? How do I live a life with a hidden disability?

The email from WEGO health contained a link to additional awards and nominees. I began following the nomination and award process and found myself devouring each nominee and their story. I became obsessed with their journey’s and how they were living despite chronic illness.

Dec 15, 2011 blog post: Reflection, monition, idea, execution…

For a moment, I found myself lost in another person’s story and passion. After reading several nominees blogs, I had a thought. Could a shift in focus away from vestibular struggles help me through my vestibular struggles? Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition.

Dec 18, 2011, I put together a video blog.

The 12-12-12 project was birthed and I got to work.

It wasn’t about MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

It was about Their story, Their journey, Their tragedy, Their hurt, Their pain, Their grief, Their loss!

I became the person I needed that never came. I wanted to hear their stories, learn about their conditions and spread awareness! I became so invested in this project that I was often distracted by my own personal struggles living a vestibular disorder.

If I felt fatigued, I would think of Kim and her struggles living with a Budd- Chiari Syndrome, and the fatigue that engulfs her.

If I didn’t want to walk for exercise, I would think of Peachy living with a form of arthritis called Ankylosing spondylitis that requires her to exercise to maintain flexibility in her joints.

If I didn’t want to take a shower because I was down and depressed, I would think of my dear friend Blake. He would love to hop out of his wheelchair and jump into the shower, but Spinal Muscular Atrophy has taken that from him.

If I could choose a single lesson from this project to share with you, it would be this….

Actively search for and wholeheartedly listen to another persons story. You will create a synergy of emotional healing for the both of you! There is power in numbers.

Thank you to EACH project member for opening yourselves up to share your story.

January: Blake Watson
Condition: Spinal Muscular Atrophy

February: Kim M.
Condition: Budd-Chiari Syndrome

March: Amy Gurowitz
Condition: MS

April: Rhiann Johns ( Thank you to Mrs. Johns!:)
Condition: Long-standing brain stem lesion and spastic paraparesis

May: Sara Gorman
Condition: Lupus

June: Dale Lehn
Condition: Chronic Pain

July: Peachy
Condition: Ankylosing spondylitis

August: Sarah Levis
Condition: Arteriovenous malformations (AVM)

September: Sarah Mills
Condition: Severe multiple allergies, covering asthma, hay fever, eczema, food allergies and Multiple Chemical Sensitivity (MCS)

October and November: Andi and Jett Durkin
Condition: Down Syndrome

December: Pam Sloate
Condition: Dystonia

From the bottom of my heart, I love you all and  THANK YOU for disabling my life autopilot, putting me back on the right side of the road, and keeping me from a head on collision.

Much love,
Marissa

10 comments

  1. Speaking of taking in other people’s stories, it’s been an exciting an interesting year for me watching how you have progressed from a new blogger with a big idea to an experienced writer, interviewer, an advocate. And behind the scenes, you’ve been slowly becoming a web designer. What a productive year!

    It’s amazing how many drastically good things can happen with a shift in perspective an attitude. It’s like a key that unlocks a once undiscovered landscape of opportunities and experiences. Instead of waiting for life to happen, you make it happen. It hardly ever happens like we plan, but often times it’s for the best.

    The Marissa train has left the station, and I don’t believe anything is going to stop it. :-)

    • Blake! This really touched me. Are you trying to make a sister tear up? :) Thanks for EVERYTHING. Box mover for life!

      Much love,
      Marissa

  2. Marissa,
    I’m so thrilled you’ve discovered one of the secrets of life: by stepping outside of ourselves, we find ourselves. When I came across your blog, I beheld a treasure, a beautiful woman inside and out who embraced others wholeheartedly and devoted 2012 to building awareness of their health conditions. Who imagined the friendship to come when I first wrote to you, who imagined the turn I was about to take. At that point, I had already planted the seeds of new directions for my own blog, intending to share Gohei’s journey. The Spirit Of Giving – http://dystoniamuse.com/2012/12/26/the-spirit-of-giving/ – relating your incredible story, was my first post where I “left” the world of Dystonia. But in truth, I had simply entered a bigger and more beautiful Universe. No matter the particular disorder or illness, we’re all kindred spirits forever bound by our struggles and the life lessons they impart. Thank you from the bottom of my heart for welcoming me into the 2012 Project family!
    -Pamela-

    • Thank you sweet Pam! You have shown me that positivity and chronic illness can coexist. Your blog is an extension of your beautiful spirit. Keep writing and helping people emotionally heal!

      Much love,
      Marissa

  3. Thank you Marissa!

    As everyone has already said, this project was a completely selfless act in opening up your own blog in order to share the stories of others’, of their struggles and experiences. You gave us a voice in a world in which we may never have had otherwise!

    And as had Pamela already said, it had opened up new contacts and friendships along the way between you and all the project members, as well as between project members themselves.

    So thank you, and congratulations on a brilliant year of blogging and learning

  4. Thank you Marissa. There are many people out here nodding in silent agreement with you. We don’t always leave messages but we check your Blog for inspiration. So thank you again. It feels good to know we are not alone in our thinking.

    • Thank you Kari!

      ” It feels good to know we are not alone in our thinking.”

      That is the truth! I have felt VERY comforted to know these thoughts and feelings swirling around in my head are valid. Thank you again for being with me on this journey!

      Much love,
      Marissa

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