The Spirit Of Giving

14394117_sI can’t think of anyone who epitomizes the spirit of giving more than my soul sister, Marissa Christina. Marissa’s world is rocked by a vestibular disorder that jolts her surroundings, creating sensations of constant motion and messing with her balance. Imagine Marissa sails in a fragile ship amid stormy seas and she’s ever in need of staking a small piece of solid ground in respite from the turbulent waves.

2012 marked the year Marissa leapt outside of herself on a journey of discovery, embracing new friends whose lives have also been invaded by aliens of ill-health. The role she embraced was much more than storyteller. Part news reporter, part empathetic friend, part student, she immersed herself in bizarre realities that I’m sure in a sense felt oddly familiar, featuring them in her blog – Abledis.com – and social media with a series of monthly projects. When I seized the moment, Marissa welcomed me…and Dystonia as her December cause.

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. -Marissa Christina-

Two self-confessed control freaks, Marissa and I bonded instantly. When we discussed our disorders, I couldn’t help but notice the reflective irony in our conditions. Mine manifests as a physical battle with my actual involuntary motion. Hers is an experience of sensory disorientation, although nothing is actually moving or the world is working at its normal pace. One day, Marissa’s perceptual environment developed “Dystonia” and she’s never been the same.

edited Marissa_bioI chalk up our encounter to fate and consider myself lucky to close out her 12-12-12 Project. I must give mention to the worthy souls with whom I share the spotlight and I urge you to learn their illuminating stories and read about their health conditions: Blake Watson, Kim M., Amy Gurowitz, Rhiann Johns, Sara Gorman, Dale Lehn, Peachy, Sarah Levis, Sarah Mills, and Andi Durkin.

Informing oneself about medical disorders is more than a cautionary tale; it’s how awareness is spread and an important step toward securing empathetic understanding among human beings. I hope you are blessed with inspiration in the coming year. Your company is my privilege!

-Pamela-

Note: You can find Marissa on Twitter at https://twitter.com/MarissaAbledis.

14 responses to “The Spirit Of Giving

  1. Beautiful, absolutely beautiful.

    xxxxxxxxxx

    • Paddy, Marissa is a beautiful person and my angel from heaven. She devotes her heart and soul to these projects, making the world a better place. She’s been posting about Dystonia all month and next on the list is a podcast featuring Ms. Dystonia Muse! What more could I ask? -Pam-

  2. I always feel privileged to read your musings, Pamela. And I’m not surprised yours were chosen by Marissa. I look forward to hearing more from and about Marissa as well.

  3. Excellent tribute. The 12-12-12 Project is a rare exercise in empathy. Looking forward to the interview!

    • Hi Blake, I agree wholeheartedly. My belief is that we must ever strive to understand one another and bridge the gaps that ignorance brings. Marissa is a role model for stepping outside our individual worlds, supporting each other, and spreading awareness among communities. It was a pleasure to learn about you on her blog and your own – I Hate Stairs – opening my heart to a whole new experience. -Pamela-

  4. Angela Harshbarger

    There are so many diseases. I am glad people are acknowledging them.
    I have sarcoidosis too, another strange disease.
    Angela

    • Hello Angela, I’m thrilled to help people with other disorders spread the word. After all Marissa has done for Dystonia, how could I not introduce her to my readers! Certainly, those of us with health issues understand the importance of building supportive and knowledgeable communities. Thank you for commenting and sharing, that’s what it’s all about. -Pam-

  5. Fantastic post and one I know which will mean so much to Marissa and everyone involved. It is a blessing to find someone who will go that extra mile to spread awareness of the more unusual conditions; ones which often get overlooked otherwise. I really look forward to the interview and learning even more about dystonia

    • Hi Rhiann, I love your blog: My Brain Lesion and Me: http://brainlesionandme.wordpress.com/. Us neuros need to stick together (lol)! My belief is that people with different health conditions are in the perfect position to help each other with awareness and education as we well know their importance. As soon as I posted this article, I hit Twitter and followed any project members I wasn’t already following; I had already bumped into you and a few others in cyberspace. I’m thankful to all the people I’ve met on my journey. Your support and inspiration have truly changed my life! -Pam-

  6. Pingback: I think you guys miss me. « A Lateral Plunge: Where life goes from here…

  7. What a lovely tribute! My experience working with Marissa was wonderful as well. I’ll be watching for your interview!🙂 – Sarah

    • Sarah, Thank you for visiting. Marissa is an incredible person who truly embraced all of us. I’m grateful for the opportunity to connect with other bloggers and learn about their conditions including your life with a brain AVM. I encourage readers to check out your blog, Girl With A Cane, at http://www.girlwiththecane.com/. I must add that I’m utterly impressed with your freelance writing activities and consulting business in the disability field, areas of vocational interest for me. Keep up the great work, I’ve no doubt you’re making a huge difference in so many people’s lives and helping to reshape perceptions of disability. -Pamela-

  8. I’m so thrilled to have come across this blog and am just touching the tip of the iceberg in regard to all of the wonderful things you are sharing. I have had permanent bilateral vestibulopathy with oscillopsia for seven years now. Every moment of life is like experiencing it as if I’m adrift at sea, in a rowboat during hurricane swells. How appropriate, this being just an hour into the new year, that I should find you. Wishing everyone a happy, healthy and balanced New Year. – Arthur

    • Arthur, I’m thrilled to meet you and so glad to have found friends like Marissa to open my eyes to new horizons as part of my journey. The true purpose of my blog is to reach beyond Dystonia because everyone struggling with a physical issue is adrift in the same sea; we’re just floating in our own vessels and encountering different waves. How appropriate that my first comment in the New Year comes from someone outside the Dystonia community, thank you for that gift! I look forward to reading your life-inspired fictional memoir, Dizzy, and hopefully learning more about you. Happy New Year! -Pamela-

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