contributed by Justice Rickenbach, 21-year-old living with PWS
I sometimes wish people could see inside my head, hear the thoughts that can make everything seem so hard. I wish I could explain why sometimes this can overtake me and being reasonable is not even an option.
For me anxiety is this voice inside my head that is constantly telling me I am not good enough. I am not worthy of being loved. I am not doing my job well enough. I will never be accepted into a group of friends. These are just a few of the battles that go on in my head almost daily.
A friend and mentor once told me that anxiety is like a cloud, “you can sit on it or let it go”. Letting it go is hard but is important for your emotional and physical health. I know that many of my thoughts are not logical, that I should be able to just let them go. My brain doesn’t work like that, I need to ask questions and have someone tell me it will be ok, then I can start to let it go.
When I see other people struggling with anxiety, I can sense it, and I always try to help them. I want them to know that they are enough, that they are loved and seen and that they are not alone. Unless you have anxiety, I don’t think you truly understand how hard and lonely it can be.
I have missed out on a lot of things I would have liked to have been a part of but because of my anxiety I stayed home. When I am anxious my cataplexy gets much worse and the thought of having one of my episodes while out makes the anxiety even worse. It is a constant battle that sometimes makes me want to give up. But then I remember that I don’t need to hold on to this feeling that I can let it go.
I am so grateful for people in my life that have helped me through some of the hardest, most anxious times in my life. Anyone that struggles with anxiety please find people that will encourage and support you. People who will not try to change who you are or tell you your feelings are not real or valid. Find your people and go to them when you need help, don’t miss out on life because of your anxiety.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.