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"Mutual Honesty": A Conversation with Sailor West

Wednesday August 14, 2019

Sailor West and her dad, Todd

 

How did you feel when you learned about your father’s diagnosis?

I was 15 when my dad shared his diagnosis with me. I think my reaction happened in waves. The first wave brought utter confusion and a feeling of disbelief. One second my dad, my stepmom, and I were hanging out in the living room and the next I was hearing something I never thought that I would hear. It was like I was put in another life or a scene from one of the sad, yet addicting, books about disease and love. I think that hearing the news of his diagnosis really put me in shock because he was the last person I ever would have thought to be given something like this. Throughout my whole life, he had been the most untouchable, consistent, and strongest man. He was perfect in my eyes. Once the shock faded and I was brought back to the ground, that was when the tears hit. They just kept coming and coming. All of a sudden the idea of the rest of my dad’s healthy life that I had pictured in my mind was totally taken away and left with an image of uncertainty. I really didn’t know what Parkinson’s was but I knew that it was going to change his and all of our lives. The thought of my dad, the strongest, most untouchable man I had ever known, being (pretty much) uncontrollably affected by a chronic condition really crushed me.

 

 

What has it been like growing up with a father who has Parkinson’s? How has it affected your time in high school?

Overall, I would say that my father having Parkinson’s has made me more aware and conscious of my parent’s wellbeing than many other high schooler’s my age. My dad never hides his condition from me and our mutual honesty has made me much more in tune with his condition and how I can help him. Sometimes, I get too worried or anxious about him which is an area that I am trying to improve. Although my dad is very honest about his condition and feelings with me, he is equally supportive of my journey, struggles, and life. He has always supported me unconditionally which has made my time in high school truly amazing. He has done everything he can to make sure that our home is a good environment to help me do well in school and pursue my passions. I have also been really lucky that my friends that I have met at school have been so supportive, loving, and judgment-free about my dad’s situation. 

 

 

How did your dad’s diagnosis impact your family?

As expected, my dad’s diagnosis brought a deep sadness to my family. It truly came out of nowhere for a lot of us, as he was strong and thriving. We are still all very saddened by it because we never wanted any of this for my dad. However, in spite of our sorrow, my family has been inspired even more by my dad through his response to his diagnosis. Whenever we talk about it, he continually says that all he wants us to do is live in the present and enjoy today. Every day we live by those words. Since Parkinson’s is a progressive disease, it is hard not to think about what the upcoming years will bring for my dad. However, we are still traveling, trying new things, doing what we love, spending time together, and living in the moment. 

 

 

Do you think that Parkinson’s nonprofits and communities help children and families enough? What resources or outreach opportunities would you like to see?

NW Parkinson’s Foundation has been such an amazing resource for my family to be able to connect with others in the Parkinson’s community. Something that is so great about the foundation is that they are there for the patient right at the diagnosis with amazing resources, amazing people to talk to, and their awesome Hope Kits that I have had to pleasure to help make. They want to show those who are diagnosed that there really is a life after Parkinson’s.

I believe that that aspect of the foundation is truly so special. When I began volunteering at NW Parkinson’s, I was especially excited to help impact the youth and young adults of parents with Parkinson’s. In the first couple years of knowing about my dad’s diagnosis, I had never even heard of a teenager who had a parent with Parkinson’s. Once I was able to meet someone who was going through the same thing, I realized how valuable those connections are. I would love to see more resources for teens and young adults in the Parkinson’s community to connect with each other such as in person or online support groups. 

 

 

Have you been able to find others (high school/life) that were/are dealing with a similar diagnosis? If so, was/is it useful to talk with others going through something similar?

Yes, actually. This past fall I met my friend Debbie at my new job. After talking, we found out that we both had a parent with early-onset Parkinson’s. I soon found out that her mom was getting ready to have the same Parkinson’s-related surgery that my dad had gotten the year prior. It was so amazing to finally have found someone that I could relate to and talk about things with that other young adults couldn’t understand. It made me feel like I was not alone in this journey. She quickly became a form of a big sister to me and I look up to how she carries herself and supports her mom everyday. It is hard to explain my dad’s situation to people who have never been a part of the Parkinson’s community. Having someone that gets it is so beneficial.



What are you doing now?

I am about to start my senior year of high school. College applications are coming up and it feels surreal that next year I will be beginning a whole new chapter of my life. But, for now, I am super excited to have a great last year of high school. Along with taking courses, I will be the Vice President of my school’s DECA chapter (a club that participates in business and marketing competitions), apart of the student council, volunteering at NW Parkinson’s as much as I can, and trying to pick up shifts at the beauty and skincare store that I work at. Overall, I have a fairly busy life which can make it hard to balance school, friends, and family. But, my goal this year is to prioritize that balance!

 

 

Would you say that experiencing the impact of Parkinson’s has changed you? If so, how?

I believe that experiencing the impact of Parkinson’s has definitely changed me as a person in many ways. I think it has made me mature in ways that I would never have if not for my dad’s diagnosis. I have experienced my dad go through surgery, take medicine every day, go through handicap entries, and be stared at for his abnormal walking. All of these experiences have made me so much more understanding and aware of what being disabled truly is.

One of the main ideas that I have taken away from living with a disabled person is that having and giving dignity is so important. When someone sees someone who is having trouble, whether or not they are disabled, there are two routes that they could take. One is to gawk and stare at the person, taking away their dignity and treating them as if they were a show. The other is to talk to them and offer help. This shows respect for the person and boosts their dignity. Over the years, my dad and I have seen both and I have learned how much value the second route holds. The impact of Parkinson’s has helped me to understand the value of treating those who are disabled with dignity and respect and that a disability does not define anyone.

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