sdolphin63
New member
- Joined
- Jul 28, 2012
- Messages
- 2
- Reason
- Lost a loved one
- Country
- US
- State
- Maine
- City
- Portland
Hi everyone. My name is Sarah, and I am nineteen years old. The last time I posted on here was about three years ago. My dad was diagnosed with ALS in June 2012, now three years ago. I found out on July 15th, 2012. I found out because I accidentally found a bottle of Rilutek, and I googled what it was. I discovered it was a medication for ALS on my dad's dresser, and when looking up ALS, there were two things that stood out to me: "no effective treatment or cure" and "life expectancy is three to five years." I have never cried so hard in my life. I knew something had been wrong with my dad, but I didn't quite know what. But at that moment, I knew he was going to die. And instead of going to talk to him about it or going to talk to my mom, I posted on this forum. I spoke of how I didn't know what to do and how the diagnosis didn't make sense to me; he had no obvious neurological symptoms to me, just a bad cough. My dad was going to die, and I had no one to tell.
I am posting today to share a story of hope and inspiration. Well, I'm giving you a preview of the story. Please see the link at the bottom of the page... I wrote a published memoir about it... which is also why I am posting today.
After I found out my dad was sick, the countless responses on this forum gave me the courage and strength to somehow find meaning in life, somehow find a way to keep going. I didn't tell my parents I knew, and it was three months before they told me, as they wanted me to have "a good summer." Well, as much as it was a summer full of sadness, anger, and depression, it was the best summer I could have had, because I made the most of the time I had with my dad. It is not a happy ending there though. My dad passed away sixteen months after he was diagnosed, in October of 2013. Before and after he died were some of the darkest times of my life. And for every teenager out there, know how much I get it-- know how hard I know it is.
Several months after my dad died, I decided to write down some of my experiences and thoughts as a way to process my grief. Shortly after, I was introduced to a girl, Karen, whose mom has ALS. I soon realized everything she was feeling—the anger, the guilt, the resentment—was everything I had felt when my dad was sick. I started adding to my journal entries, and as I completed them, I sent them to her. Each time, the weight of sorrow was lifted up off her shoulders, just a little; she no longer felt alone. And somehow, miraculously, the story of my journey turned into a published memoir.
This memoir is the story of my journey through my dad’s diagnosis, death, and what I have chosen to do to carry on his legacy. After my dad was diagnosed with ALS, I felt as though I didn’t have anyone to turn to who was experiencing a similar situation. I didn’t know anyone my age who had a dying parent too, and when I looked for books, I couldn’t find any that could help me. I didn’t know if what I was feeling was normal-- Was I supposed to have feelings of resent towards my dad for being sick? To lie on the floor and cry myself to sleep every night? It was months of depression, anger, and denial before I finally woke up and literally picked myself up off the ground. I chose to do everything I could to live without any regrets in the time I had left with him and stand beside my hero in his battle with ALS.
I helped him go swimming with stingrays, go to the 9/11 memorial in New York City, and swing a golf club again. I encouraged him that he wasn’t missing much by not being able to eat dinner with us anymore (“Sorry mom, the chicken is dry”), and I made riding in a wheelchair fun (think me racing him across the room and “accidentally” flipping him over). More importantly, I helped do something about his greatest frustration: there was no cure or effective treatment for ALS. I helped organize a team for the Walk to Defeat ALS, gathering over 200 people and raising $23,000.
Less than a month after the walk my dad lost his battle with ALS. ALS had defeated him. But then again, it hadn’t. My dad had maintained his positive attitude up until the end, and he never blamed anyone for his disease. I honestly don’t know if I would ever be able to do that; I would probably blame my parents for “giving me bad genes” as I do whenever I get sick. Even after my dad died, I wasn’t about to stop fighting ALS. I wanted to carry on my dad’s mission to find a cure. My campaigns have touched people nationwide, bringing awareness and funding towards this currently incurable disease.
If this book has the potential to reach just one person like Karen, just one person who realizes what they are feeling is normal and is able to cry just a little less every night, then I can know my contribution to the world has truly made a difference. I will have helped someone who needs help, the exact thing that I needed all those months ago when my family’s journey with ALS first began.
it is called "Just to Make you Smile," because that's all I ever wanted to make my dad do. Since it was published a year ago, I have been told the title has a double meaning-- because it will make you smile too. It will also make you cry and laugh, and it will make you think about how ALS has affected your life and those you love, but ultimately it is a story of inspiration.
After the book was published, I wasn't ready for it to go very public at that point. I only let people close in my life read it, although it was promoted briefly by my local ALS chapter. My goal is for my story to touch the lives of as many people as possible, to share my story and to let others know they are not alone in their battle with ALS.
If you have any questions or want to contact me, you can respond here.
Thanks for reading, sorry I know it is a long post. ALS is one of the most terrible diseases there is. And I want to do anything I can to help. If you read my book, I hope you can find some sense of peace, comfort, and inspiration. We will find a cure to ALS.
All my best,
Sarah
I am posting today to share a story of hope and inspiration. Well, I'm giving you a preview of the story. Please see the link at the bottom of the page... I wrote a published memoir about it... which is also why I am posting today.
After I found out my dad was sick, the countless responses on this forum gave me the courage and strength to somehow find meaning in life, somehow find a way to keep going. I didn't tell my parents I knew, and it was three months before they told me, as they wanted me to have "a good summer." Well, as much as it was a summer full of sadness, anger, and depression, it was the best summer I could have had, because I made the most of the time I had with my dad. It is not a happy ending there though. My dad passed away sixteen months after he was diagnosed, in October of 2013. Before and after he died were some of the darkest times of my life. And for every teenager out there, know how much I get it-- know how hard I know it is.
Several months after my dad died, I decided to write down some of my experiences and thoughts as a way to process my grief. Shortly after, I was introduced to a girl, Karen, whose mom has ALS. I soon realized everything she was feeling—the anger, the guilt, the resentment—was everything I had felt when my dad was sick. I started adding to my journal entries, and as I completed them, I sent them to her. Each time, the weight of sorrow was lifted up off her shoulders, just a little; she no longer felt alone. And somehow, miraculously, the story of my journey turned into a published memoir.
This memoir is the story of my journey through my dad’s diagnosis, death, and what I have chosen to do to carry on his legacy. After my dad was diagnosed with ALS, I felt as though I didn’t have anyone to turn to who was experiencing a similar situation. I didn’t know anyone my age who had a dying parent too, and when I looked for books, I couldn’t find any that could help me. I didn’t know if what I was feeling was normal-- Was I supposed to have feelings of resent towards my dad for being sick? To lie on the floor and cry myself to sleep every night? It was months of depression, anger, and denial before I finally woke up and literally picked myself up off the ground. I chose to do everything I could to live without any regrets in the time I had left with him and stand beside my hero in his battle with ALS.
I helped him go swimming with stingrays, go to the 9/11 memorial in New York City, and swing a golf club again. I encouraged him that he wasn’t missing much by not being able to eat dinner with us anymore (“Sorry mom, the chicken is dry”), and I made riding in a wheelchair fun (think me racing him across the room and “accidentally” flipping him over). More importantly, I helped do something about his greatest frustration: there was no cure or effective treatment for ALS. I helped organize a team for the Walk to Defeat ALS, gathering over 200 people and raising $23,000.
Less than a month after the walk my dad lost his battle with ALS. ALS had defeated him. But then again, it hadn’t. My dad had maintained his positive attitude up until the end, and he never blamed anyone for his disease. I honestly don’t know if I would ever be able to do that; I would probably blame my parents for “giving me bad genes” as I do whenever I get sick. Even after my dad died, I wasn’t about to stop fighting ALS. I wanted to carry on my dad’s mission to find a cure. My campaigns have touched people nationwide, bringing awareness and funding towards this currently incurable disease.
If this book has the potential to reach just one person like Karen, just one person who realizes what they are feeling is normal and is able to cry just a little less every night, then I can know my contribution to the world has truly made a difference. I will have helped someone who needs help, the exact thing that I needed all those months ago when my family’s journey with ALS first began.
it is called "Just to Make you Smile," because that's all I ever wanted to make my dad do. Since it was published a year ago, I have been told the title has a double meaning-- because it will make you smile too. It will also make you cry and laugh, and it will make you think about how ALS has affected your life and those you love, but ultimately it is a story of inspiration.
After the book was published, I wasn't ready for it to go very public at that point. I only let people close in my life read it, although it was promoted briefly by my local ALS chapter. My goal is for my story to touch the lives of as many people as possible, to share my story and to let others know they are not alone in their battle with ALS.
If you have any questions or want to contact me, you can respond here.
Thanks for reading, sorry I know it is a long post. ALS is one of the most terrible diseases there is. And I want to do anything I can to help. If you read my book, I hope you can find some sense of peace, comfort, and inspiration. We will find a cure to ALS.
All my best,
Sarah
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