Having a child with an illness is any parent’s greatest nightmare. MS being an unpredictable and progressive disease can invoke a lot of emotions for the whole family once a diagnosis has been established. Hug your child from time to time and let them know that it is going to be okay. Give them the reassurance that you are by their side no matter what. Be your child’s greatest cheerleader and encourage them to continue with their regular activities to keep them engaged. Practicing physical activities, getting adequate sleep and following healthy diet patterns can have a huge impact on a child’s MS journey.Continue reading
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.
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/
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.
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.