Hiking for MS – Final Thoughts

I tried to convince myself that I would not cry during my last few steps to the Mexican border, and thus completing my goal of 817 miles on the Arizona Trail. But even after all my meandering through desert, forests, and mountains, lack of uninterrupted sleep and my minimally acceptable hygiene conditions during those last two and a half months I was not hardened to the overwhelming floodgate of tears that swept over me.

I have admitted that I undertook this endeavor in a naïve fashion. I had a purpose in mind and didn’t truly consider the many obstacles that one might face: dropping out of hikers, injuries, maladies, and even getting lost to name only a few.  My purpose was to inspire others and create a national awareness to a disease that I, like hundreds of others, had been diagnosed with. It was my intent to bring national awareness that could impact many lives around the world and, so even my reach was just as ambitious as an 817 mile hike.

Recently I have been asked about the highlight of my hike. I can truly say that there wasn’t any one point that was any more special than any other. The highlights were not necessarily due to my experiences on the trail. Many were due to my interactions with those who opened up their hearts, homes, and selves to us.

Those days when I was privy to walk for an individual with MS were also special times. They were reminders of how we sometimes stumble due to physical impairments and have to find the strength to pick ourselves up each time.

I learned lessons of strength, commitment, and patience as I approached the challenges of each day.

I am thankful to family and friends who supported this hike, and to the MSAA for helping us with our fundraising efforts.

Most of all, I am grateful to all of those who believed that this hike could encourage and inspire those of us who suffer from multiple sclerosis. I thank you for giving me the chance to make a difference.

Seasons Greetings. May this Holiday Season bring blessings and health to all!


Editor’s Note: To see pictures and read all of Shawn’s entries from the trail, please visit her website http://hiking4ms.org/


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MSAA’s Artist of the Month for December 2012

MSAA is very proud to present our 2012 Art Showcasecelebrating the work of artists affected by MS.

December Artist of the Month:

Angela Bennett – Lexington, KY

 “I take nothing for granted, and I live each day to its fullest potential. I have RRMS but my MS is very aggressive, and I became disabled in 2009. Since becoming disabled, I have grown in ways I never once thought possible. I have become a beacon of light, caring and volunteering for others when I can, and my empathy and compassion is stronger than it’s ever been.

This acrylic painting on canvas, titled ‘Aneia’, represents my souls awakening and expansion to the person that I am today.”

To View the Complete 2012 Art Showcase Online Gallery, please visit support.mymsaa.org/artshowcase201

To Send an Artist of the Month Online Card for December 2012, please visit support.mymsaa.org/artistdec12

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An Introduction

By profession, I am a music portrait photographer running around in such big cities as New York, Los Angles and Austin. By circumstance, I am a 26 year-old who happens to have MS.

That last bit can be a bother, but I like it much better when it isn’t.

Here’s a little bit of the backstory:

In 2009, I was attending Pepperdine University. One day, I ran out of one of my hardest business class finals, and jumped in the car. I had to get downtown to the photography studio to start figuring out how we would engineer this set idea for a really ambitious and rapidly approaching photo shoot. I buckled myself in, turned the radio on and as I shifted my gaze over my left shoulder to pull out of a tight parallel parking spot, I noticed everything double and separate. I rubbed my eyes. The further left I looked, the farther away everything got from each other. I couldn’t tell which the “real” road was and which the “other” road was. I rubbed my eyes again, squeezed them shut and re-opened. There were two pictures of the same world and I could not tell which was mine.

I knew that I was probably not taking care of my body as I should, being a 22 year-old college student (Stress… check; lack of sleep… check; probably not eating enough… check). Off to the ophthalmologist I went for further evaluation. The lens prisms he prescribed to modify my eyeglasses with, only corrected the double vision sometimes. This was not muscular; it was a nerve issue — the plot thickened and we reacted.

A gauntlet of tests ensued that summer: MRIs, EKGs, EEGs, blood work, nerve tests, Spinal tap, antibiotics. I was a healthy 22-year-old, and all of a sudden I was a patient in hospitals, with doctors of every specialty trying to diagnose me.

There were results that pointed to multiple sclerosis (MS), but nothing was conclusive, and some of the results that raised flags were results immediately contingent on other situations that weren’t mine. All other possibilities were diseases too rare, obsolete, or required symptoms I didn’t have and wouldn’t get for whatever reason, so were immediately ruled out. Complicating things further, each symptom that I had on its own were all circumstances perfectly healthy people have all the time.

What happened in my mind after all of this new hospital stuff was full-fledged “western medicine distrust.” I watched chemo ultimately kill my dad four years earlier, and I felt like I knew the hospital/pharmaceutical politics. It seemed doctors were trying to diagnose me with something so hard that they couldn’t pin, that I didn’t believe I had. Hospital bills, drug reactions, spinal tap complications, and anesthesia all followed. I was plugged into the wall, there were needles in my arm, my spine; I was terrified of every result. There’s just something inherently frightening about going this deep into such a thorough search of your complete physical makeup and having to sit back and wait patiently each black-and-white result, over, and over.

The double vision went away on its own after about a week, and I went back to business-as-usual. A second major symptom did not come on until a year later: a numb, tingling sensation from my knees down and in my hands, tips of my fingers. It was then when my doctors agreed; it was time to begin to discuss treatment.

My goals and career to me seemed to all of a sudden be in jeopardy, at the quickly developing and bright-eyed age of 22. The more I began understanding MS and my own new set of circumstances, the more my life slowly began to come into focus.

Thinking back I’m sure there probably were smaller, more seemingly insignificant indicators that could have helped point to the MS sooner, but that’s neither here nor there. What matters is that it’s clear that I have MS, no more tests and questions or unknowns there. Although there is no proven cure, there is a lot that I can do to manage it, which incidentally are all things I should have been conscious of anyway to live a happy and healthy life.

Read on: MS as a Blessing

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Welcome to MS Conversations!

MS Conversations is the Multiple Sclerosis Association of America’s new blog!

It is our hope that this blog will provide a forum for you, the MS Community, to share your triumphs & struggles, tips, resources, and much more.

We very much want this to be a blog for YOU, so please feel free to leave comments and suggest topics for us to cover in the future!

Just as a reminder that MSAA does have a terms and conditions policy for our website and blog – so be sure to review before posting any comments.

Please check back on Monday and in the coming weeks for updates on the Swim for MS Pool Party, plus more tips and shared stories!

Let’s start the conversation!

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