Finding the Sun Through the Clouds. Dawnmarie Deshaies

Finding the Sun Through the Clouds - Dawnmarie Deshaies


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Truth

       A New Path

       A Bold New World

       The Tour of a Lifetime

       The Road So Far

      Acknowledgments

      To my cousin Nick. While taken by this disease, he never let his illness take him. He lived each day to the fullest even when in his wheelchair. Here is a poem Nick wrote that I would like to share with the world:

      Flying

      by Nick Sucy

      It’d be awesome to be able to fly.

      Not in a plane, but like Superman flying.

      Right?

      Imagine the places you’d go and the great sights you could see.

      But you can’t fly, and I can’t fly.

      I bet you don’t hang about wishing you could fly.

      I don’t.

      I also don’t sit around wishing I could go for epic bike rides.

      Or walk down the street to hang out.

      Or climb mountains.

      If I could, I would.

      I can’t.

      It all becomes relative.

      I’ve learned that I can’t compare my life to that of others who do all those things I’d do. It’d be an exercise in futility. Even more so, it’d be an exercise in frustration.

      So whom do I stack my life up against? Where do I make the comparisons?

      I don’t. I live.

      There are more people than not who can do but don’t.

      They sit. They watch TV and drink beers.

      Maybe they dream of doing.

      Maybe, they don’t.

      There are plenty of things I can’t do but still I do.

      While they sit, I push. While they drink, I ski. While they watch, I play.

      I’d be lying if I claimed I wasn’t briefly bummed I couldn’t have climbed that mountain. But I climb mountains every day.

      While you were climbing yesterday, I pushed to campus. That’s my mountain, and every time I push it, it becomes more of a hill.

      On my way back from campus, I was resting on the Farm Road when I was approached by a man I happen upon occasionally on the bike path. He pointed to the steep, windy hill I just descended, and he asked me, “How do you do those hills?”

      I briefly thought about the question. I had no concerns about being cliché when I told him, “I just do it.”

      *****

      To everyone who has stood by my side in my hardships, my disappointments, I thank you for the continued support.

      To all my fellow multiple sclerosis warriors, all of you who live with this disease are true heroes and warriors. Continue to inspire those around you who are also afflicted but continue to also spread thoughts of love and persistence with all fellow afflicted by autoimmune disorders.

      I dedicate my thoughts and prayers so that continued awareness can be spread, and I hope that one day we find a cure for multiple sclerosis.

      This is all for you!

      Introduction

      Dear readers,

      Your life is your story. Write well and edit often.

      Living with multiple sclerosis is an everyday challenge. I know the previous statement is quite generic, but to all those who have been diagnosed or are acquainted with the disease, we know firsthand the toll it takes upon the self, the family, and the friends.

      After learning about my diagnosis in 2012, after months of contemplating the unknown path my life was about to take me on, I began to do my research compared to just what the health professionals told me. Learning that this specific autoimmune disorder is a progressive disease, I knew it would be with me for the rest of my life. Recognizing the drastic toll this disease has clamped over me only pushes me to persist and manage to continue to live a healthy and positive lifestyle.

      As one can see, living with this disease, however, makes it not always that simple to keep a positive attitude with the constant physical pain alongside the mental struggles brought on by the unstoppable decay. Every day is different for me. To give up on yourself and your dreams is only to submit yourself to the tumultuous roller coaster of unbridled pain and misery. When depression bombards me and the thought of giving up in that all-too-familiar moment enters my mind, I could throw in the towel but then I realize it’s up to me to control what I want to do with my life—the disease will not define me.

      With the initial prognosis, I struggled for those first few months, stricken with unimaginable fear of falling and being attacked by myself, and it forced me to be bedridden and afraid. After many months of familial support and self-actualization, I knew these phantoms would never leave, so I figured, Why not discipline myself to realize these actions and feelings and turn them for the better?

      Multiple sclerosis has made me even more determined to live my life. Not only have I accepted this disease as a part of who I am, but I also affirm it will never stop me from telling my story or living the happy and fortuitous life of love I deserve.

      You deserve this life as well, and I hope my story helps you realize this for yourself.

      Chapter 1

      Early Life and Misfortunes

      My name is Dawnmarie Deshaies. I was born and christened in a tiny town called Old Town, Maine. My parents are John and Barbara Desjardins. I have one sibling, and his name is Mark. He’s four years older than I am. When I was at the age of two years old, my parents moved our family to a small town called Baltic, Connecticut; the population was only eight hundred people. My family and I lived a simple life. Both of my parents, John and Barbara, worked blue-collar jobs. Our lifestyle produced a simple outlook on how life should be. I was your average girl in a small town. I loved to draw and dream of what my life would be when I got older.

      I went to school, played outside like any other kid. I loved music, especially Queen. I was naturally silly with my friends; we would ride our bikes and play outside for hours on end. I had one close friend, named Meg. As a young girl, I struggled with sickness and the constant rotating door of hospital visits due to my severe asthma. It seemed that everything inside the house and outside would attack me personally, often causing flare-ups with my asthma, suctioning air from my lungs. The constant threat and fear of losing that last breath. My parents did everything they could, from taking all my stuffed toys out of my room to putting an air conditioner in my bedroom window. The air conditioner seemed to help me breathe, especially during the winter and cold months. When my lungs began to feel crushing from constant attacks, my parents would admit me to the hospital. The doctors would put me into what they called the green tent. It was a plastic and see-through tent pumping pure oxygen to aid my breathing. They would also administer an IV into my arm and give me medications to make my lungs healthy again. I would usually be in the hospital for over a week at a time, in the cold and sterilized place.

      I began to shape my world around the idea that everything was normal. I did what my doctors told me and followed my parents’ instructions to the letter. The next thing I had to go through was the dreaded allergy shots. Every week, I had to revisit the doctors for a continuing


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