Living with Passion: A Young Woman Living With Huntington’s Disease Journey to Truly Live with Passion

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Author Biography

I am a young women who is passionate about every thing I do in my life. I was born to be a teacher but because of my Huntington’s Disease, I had to quit my job as a teacher. I now teach the world about my disease and will forever have a teacher’s heart. I use writing to deal with what I have been dealt and it’s very therapeutic for me.

Author Facebook page:  www.facebook.com/livingwithpassion90

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Book Excerpt

Introduction: I am a 24 year old living with a neurodegenerative genetic disorder called Huntington’s Disease. I was diagnosed at a very young age of 23 years old and showing signs at 20 years old. This is a very young age for someone with HD as the average onset of symptoms is 35-55 years old. Being so young and being diagnosed with such an awful disease is a hard thing but it was a weight off of my shoulders once I was officially diagnosed. I have always known I had the 50/50 percent chance of inheriting the HD gene because my Dad, grandfather, eight aunts and uncles also had the gene. When I was diagnosed, I was able to begin living it with it, rather than continuing to constantly fear the unknown. Having HD has positively affected my out look on life. I try to always take in the good moments, and live more in the moment, whether that; is squeezing my nieces, nephews, and God son tighter and more often, soaking in that sun shine, laughing with my family and friends more, and thanking my support system more often. I do my hardest to live each day passionately. Yes, it would be easy for me to stay in bed all day, but I believe that solves nothing, so I wake up each day and live. I make plans with my support system and I keep going. I am so grateful for my support system because if I did not have them it would be ten times easier to stay in bed. I say to myself, “I can stay at home alone or I can go somewhere with people I love,” and I always choose to go. I may not be working, but I ever rarely spend a day home where I have no visitors or am not out with people. Due to my HD, I have no idea what my future holds, if there is no cure or better treatments I will deteriorate and continue to loose my ability to walk, talk, and think properly. I keep my faith and hope alive and pray each day. At 24 years old and being diagnosed with an awful disease, my faith and relationship with God have been strengthened. I have a new found love of writing and it has become very therapeutic to get my feelings, frustrations and fears out. When I was first seeing my neurologist, Dr. Frank and genetic counselor , Lauren, I constantly felt like the elephant in the room and was also trying to figure out who knew I was seeing Dr. Frank and who did not know. Those who did know seemed scared to bring it up. I could never have done it without the push from my sister Liz, but I was ready to say this is me and I am living with an awful disease but I am doing so passionately ,so I started a blog. The responses that I received were utterly amazing and incredible. I received messages from my family, friends, and people I had not talked to in years telling me how I had them in tears and they were praying for me I have loved nothing more than sharing my HD journey with the world. I do it for therapy and awareness. I without a doubt consider myself an advocate. I have people who tell me that I have changed their outlook on life and inspired them to live better. I feel humbled when I hear this. To me I am a normal person living with an abnormal disease who has decided to show my true strength, not let the HD get the best of me, fight it, and live passionately. I always had the power, strength, fearlessness, and grace to deal with it inside of me before I just was not aware of it until I truly needed it! I get my strength, passion, fearlessness, joy, and happiness all from my angel Dad, who lost his fight to HD December 26, 2003. This memoir is a tribute, dedication and honor to him, who he was and what he stood for. I would love nothing more than you being a part of my journey. When reading along it just might make you cry, but if anything I hope it will make you smile and have happy tears. I hope my story will change you for the better just as my HD has done to me. I hope reading my journey, the good and the bad of my HD, will inspire you to appreciate what you do have and to live with a more positive outlook on life.”
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Fair Use Act

The use of some of these photo and content are protected under the fair use act under the copyright law. Section 107 contains a list of the various purposes for which the reproduction of a particular work may be considered fair, such as criticism, comment, news reporting, teaching, scholarship, and research. Section 107 also sets out four factors to be considered in determining whether or not a particular use is fair. 1.The purpose and character of the use, including whether such use is of commercial nature or is for nonprofit educational purposes 2. The nature of the copyrighted work 3. The amount and substantiality of the portion used in relation to the copyrighted work as a whole 4. The effect of the use upon the potential market for, or value of, the copyrighted work

Sources

I would like to thank the following sources for allowing me to post photos, related text and helpful information on this blog. Sources: Google.com Bing.com Biblegateway.com Merriam Webster dictionary Ask.com Wikipedia.org About.com Pinterest.com
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