About Shawn

I was diagnosed with MS on August 13, 2009 only one month before I was to be married. I have two brothers and one sister. I also enjoy photography, running, working out, skiing, biking, reading and writing.I want to accomplish something that few others have ever done. The Big Hike, as we call it, will achieve that goal by calling attention to the fact that people with MS can still lead practical and fulfilling lives.

A ‘Thank You’ to the woman who inspired me

My grandmother frequently told me this story about my mom. When my mom was born she was born “in the surron” (enveloped in a protective film).  Among the country people of Puerto Rico this was a very auspicious occasion because it meant that the child would grow up to be highly intelligent.  Many years later this same endearing grandmother would tell me that our Labrador retriever, Kada, was highly intelligent because he was born with a protrusion emanating from the top of his head. How this one came about, I’m not quite sure.

I wasn’t born in the surron, or with a lump on my skull. As a matter of fact, the only bumps I could remember were the cocotazos (lumps) I used to get, from the nuns in Puerto Rico, when that glassy look would change my countenance as my daydreams infiltrated their lessons. Or, when my brother, Brandon, inspired by Saturday Night Live, would hold me in a head lock and impart some Pizza Man (Bill Murray ), nookies upon me.

Unlike my Mom, I was somewhat shy and awkward as a child and had to fight for any kind of scholastic success.  Even as an athlete, my mom was told that I had 2 left feet and would never be much of a runner. I always felt that I had to work harder, in everything, to reach any sort of proficiency.

Upon being diagnosed with MS I felt like that child being dealt yet another blow. A deluge of emotions overwhelmed me as I tried to understand the implications of the disease and how it would impact my life. How much more could I endure? I had lost my grandmother, gone through a bad divorce and survived a horrific car crash. Just when I thought my life was changing, I was engaged and within three weeks of getting married again, life had dealt me yet another blow.

Depression and sorrow was not what I had expected my new marriage to be full of.  The disease, in addition to medications that made me even more depressed, had paralyzed me into a lethargic, self-pitying coma. I became a dragon in my lair; a recluse who did not want to engage in any social activities that would remind me of the pre MS life that I yearned. The passion that I once held for art, reading, and running were ghost like remnants.

After long months of bereavement I finally understood that I could NOT let MS ruin my life. So with my final acceptance I placed a caveat: I would not let MS beat me.

I meditated, started running and writing again.  I continued my book about my experiences with MS called “Rising with Dignity” (copyrighted).  I also decided, with my husband, to hike 817 miles across the state of Arizona to raise awareness of MS. Yet, more importantly I wanted to help others find the strength and courage, inherently possessed, to overcome our fight against MS.

I was starting to become whole again, confident and courageous in my fight against MS . I still had MS but I would stay grounded and not let its talons swoop me away.  I would become that scrappy child again, fighting for what I believed was just – my right to a meaningful life.

And so even though my grandmother gave birth to a child in the surron it was she [my grandmother] who bequeathed each one of us with intelligence, courage and love.  I thank her for the woman I have become.

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Staying Active with MS

My exercising pursuits probably started at age one and a half when my foiled gymnastics routine failed to propel me out of the crib. Already I showed signs of being active and rambunctious and my “antics” did not stop despite stitches from my failed attempt. At age six my mother watched in horror as someone pointed to a young girl, her daughter, about to jump from the high diving board. Finally, at age eight she enrolled me in PAL (Police Athletic League), in an effort to allow me to channel my excess energy constructively.

I continued an active life style throughout my life, until I was diagnosed with MS.

In August of 2009 I was training for my first half marathon when I was diagnosed with RRMS. The diagnosis came as a shock to me because I was not only fit but maintained a healthy lifestyle.  The news, was a shock to me and I wasn’t sure how to cope.

After the diagnosis I shut everyone and everything from my life, including running and working out. I could not envision going for a run and collapsing from an MS episode. I truly had no idea what to expect but I had anticipated the worst of what could happen.  I couldn’t go to the gym and have my ego remind me of what I could no longer do.

As I struggled with the disease I became increasingly depressed. In the past, running would always assuage any crisis I had to face; I no longer had that outlet to release my depression and frustrations.  It was a catch 22 – if I went out for a run I could collapse (in my mind) and if I didn’t I would sink further into an abyss that I had created.

It took months for me to realize that I had hit a wall built not out of mortar but fear and indecision. MS had already proven to me that I would not have the same life that I had enjoyed in the past. So, why could I think that I could easily go back to my “old” form of exercising?   Reluctantly I had to give up starting off at the high diving board and had to wade into the kiddy pool instead.

And so as my frame of mind changed so did my temperament and condition. I started jogging slowly, almost at a walk, and much less distance than I was accustomed to. I had no delusions of grandeur, only of building up my courage and stamina at whatever pace I could manage at the time.

I also changed to a gym that had a pool.  Swimming was an activity that I had not done since I was a kid.  I wasn’t strong but I just wanted to get into the pool and swim a few laps at a time. The warmth of the water me gave me the impetus to stay in longer and achieve a little more each time. There was a familiar and safe emotional sensation that would flood my senses as the memories that I had as a kid, swimming in Puerto Rico and the JCC (Jewish Community Center), would come to the surface.

My legs finally started getting stronger and my attitude shifted to one of jubilance. I became more positive about the future and my life with MS. I realized how much I missed exercising. It had always been such an important part of my life. But more so, the endorphins that were released while I worked out had a positive impact on how I felt.

I also realized that it didn’t take much for me to fulfill the joy that exercising once brought me. It was as simple as exercising with light weights, going for a walk, or aerobic swimming.

I didn’t have to try to set out to break any type of record. I needed to listen to my body when it was telling me that it was as important to exercise my body muscles as it was the brain muscles. If I didn’t use them they would atrophy, as they were already doing. And, when my body was tired I needed to heed and do less.

My “baby step” routine continued until I was finally able to run my first half marathon last year and four months later completed an 817 mile hike through the Arizona Trail.

We all have different compositional make ups. Our MS symptoms are different and so we need to tailor our activities according to our capabilities. Any form of exercise, at our own pace, is instrumental to our physical and emotional and well being.

Please note: If you are looking to start any new exercise routine you should first consult with your physician.

 

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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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Getting Started

My husband Bob and I started planning the “Big Hike” over a year ago, and while there were many starts and stops we are finally on our way. We spent many months planning the logistics of the hike, securing funds and training. There are so many things to think about. I know that my family has finally accepted my decision. They were concerned about my hiking solo, which not something I would have done, as I know my limitations. Then, there were concerns on being out in the “wild” for such a long period of time (at least two months).  My mom, especially, didn’t realize that wild to me is being back on the streets of New York City. I do love New York but I am so accustomed to being out west that NY was analogous to “wild” for me.

My family has always been behind me, in spite of my seemingly strange adventures.  Moving to Costa Rica; to Italy; studying art; becoming a banker; and a plethora of diverse changes I’ve made throughout my life.

We had a deadline for funding of August 21, 2012. About a week before the deadline I received an email from Liz Mares. She was hiking the Arizona Trail, solo, in September. I immediately reached out to her and asked if she would consider hiking with another hiker.

It turned out that we had a lot in common and our hiking pace was symmetry. Liz is an RN and also an artist. She’s from Ohio, where Bob is from and lives in Arizona now. She had Lymes Disease, and is sometimes affected, and I have MS.

Our fundraising efforts had been slow but gently it was trickling in enough to start us out, with the hopes of donations during out hike (insert link to donation page). To make sure we were able to start the journey, we dug into our own pockets the initial amount needed to begin. While Liz and I will be on the trail, my husband Bob, will be providing support by following us in a supply vehicle and posting up dates on our progress. I am also excited that my dad, of 73 years, will be joining us for three weeks! We’ve also been offered help from Trail Stewards, friends, family, and other avid hikers.  And, my mom’s efforts will be in helping us fundraise, and moral support.

With so many blessings and the support of my loving and also patient husband we can now embark on this journey. Our first day on the trail was September 11.  I will do my best to provide updates through my blog (Hiking for Multiple Sclerosis) and this one provided by MSAA. I hope that you will find my story inspiring and please feel free to comment or leave words of encouragement! I will do my best to respond when I can.

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The “Big Hike”

The idea of the “Big Hike” was mainly conceived to motivate others with MS and bring public awareness to the numerous individuals who are living with MS today. The “Big Hike” is 817 miles through the Arizona Trail, across the entire state from the border of Utah with Arizona to the border of Mexico. We are also hoping to raise $10,000 in support of the programs and services MSAA provides to the MS community.

I am very excited, nervous and passionate about this hike. I have never done anything that is so important and personal.  It will be a long journey through some desolate and rugged terrain during some of the hottest times of the year. This is an area inhabited by snakes, mountain lions and bears to name a few.  And hopefully, we will not have any experiences with any of these wonderful creatures.

Hiking is something that I love to do, and for me, an effective way of getting our message of hope to the 400,000 people in the United States that have MS.

We are all unique in our passions, hopes and aspirations.  My “Big Hike” is meant to inspire courage and resiliency in others.  Sometimes that means redirecting our goals to support our potential. To me, this journey I am taking is just as brave and honorable.

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The Diagnosis

I closed the blinds and sat in my office in the dark.  Stunned, I replayed the doctor’s message over and over in my head: You have multiple sclerosis (MS). What did this mean? From the literature I had been given it could mean that I could be wheelchair bound at some point in the sickness or have another type of physical ailment.  How much time would I have before this could happen?

I couldn’t focus on anything else except my inability to understand how this could be realistically taking place in my life.  I was healthy. I ate well, ran, and exercised.  The last few years of my life had been full of a lot of stress but I was coping by meditating and taking care of myself, emotionally. It didn’t make sense.

I wondered if it could be a false diagnosis. Things like that happened all the time. One of my best friends had also been told that she might have MS because of her development of optic neuritis (O.N.), which often a precursor to MS. But, for her it turned out to be a singular case of O.N.

What was ironic for me was that I had been tested, in Costa Rica, for multiple sclerosis many years before but those MRI’s came back negative. (It turned out to be interstitial cystitis, which the doctors in Costa Rica could not diagnose.)

But, as I sat there mustering even a seed of hope, deep down I knew that this time it had been different. There was the tingling that I was experiencing in my hands and legs as well as the optic neuritis which did not happen to me the first time.

I couldn’t sort out my emotions but I knew I had to find someone who would be caring enough to give me an explanation. It would be one of many times that I would I need a second opinion.

Many of us share the same story when diagnosed with MS. We are incredulous to the news. Some, like I, don’t even know what the disease entails or have not even heard of it. We demand our previous lives.

I went through the bereavement stages. I was angry and mad that this was happening to me. I had gone through many traumas in my life and I was finally at the point of getting my life back in order. And, yet on the brink, three weeks, of my wedding, I was hit with yet another setback.  I was being tested and I wasn’t sure that I would pass this one.

But, thankfully my grandmother taught me resiliency through her trials and tribulations (She was illiterate and raised as a slave in Puerto Rico) I gathered courage and vowed to beat MS.  Yes, I still have MS but it does not have me.  I struggle with mild setbacks but I am cognizant that they are only “mild.”

I will not give up and with this strength grows my yearning to help, motivate, and encourage others who may not be so fortunate.  I thought my passion in life was to become an artist, but now I think it is to empower others with multiple sclerosis, which you will find out more about Wednesday….

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