Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Katherine Kraines' essay:
Sometimes you don’t get to pick what shapes your life. My dad’s illness profoundly changed mine. I had just turned 13 when my father was diagnosed with ALS or Lou Gehrig’s disease. My mother told me that the disease was rare and that my dad would gradually become paralyzed and die. To my adolescent mind this kind of thing happened to other people or other families, but not to my family. Shock, denial and desperate questions strike with blunt force when a family member faces serious illness. How? Why? This can’t happen! But it was happening.
As the oldest of two children, I felt responsible to help my mother care for my dad. Our whole family was reordered as my mother grappled with my father’s illness. He quickly lost muscle function and steadily lost the ability to speak. I spent the next four years helping my mother care for my father’s ever increasing needs to be fed, dressed, moved, rolled, toileted, and bathed as the disease unrelentingly stole his mobility and independence.
It was a lonely time as a teenage caregiver. We lived in a small town and my father’s illness was well known. But my friends at school couldn’t really understand what I faced and no teacher checked to see if I was doing OK. It looked like I was handling it well and I think people didn’t want to interfere. Maybe they just didn’t know how to help. When my mother had an emergency hospitalization, I needed to get home during school to help my father use the bathroom. I was too young to drive and had no access to a car. I felt desperate. I wanted to ask a teacher for help – but I was insecure and unsure. Who should I ask? What if they said no? In that instant I realized how important it was to have a trusted adult I could count on, someone outside my family who could help with an unexpected crisis. I also needed a community of other teens that were facing some of the same difficult and sometimes shocking realities and stresses of caring for a sick parent.
My parents are my life heroes. My father faced his illness with incredible honesty and courage. My mother kept us together by providing unyielding support with moments of humor reinforced with hope. She instilled confidence and promised that we would get through this experience no matter how painful it was and that we would grow and be transformed by it. She more than fulfilled her promise.
I have always loved medicine. But the care my father needed quelled my interest in nursing. Instead I write about medicine. Being a teenage caregiver made me grow up quickly. It forced me to grapple with suffering. But I also learned that life goes on and can be filled with happiness. My life is richer because of my parents’ courage and strength in the face of a traumatic illness. And I have learned to be carefully attuned for the pain that ekes out in the stories of others. We all have stories that have shaped us. Often we just need a safe place to share them.
My social media experience includes using Facebook and YouTube. Twitter and blogging are areas I find intriguing but have no real experience with. The residency and summit would help me understand how to use social media more effectively both personally and as I write about medicine. I believe there is a real need for an online community for teenagers who are caring for a seriously ill parent or facing the death of family member. I haven’t found a good resource on the Internet that is designed for the unique needs of teens in these situations. The website could be a place where teenage caregivers can share their feelings and experiences or even blog. It could also be a social media portal to aid these teens in finding the positive relationships, resources and guidance to help them cope and grieve. This scholarship is an opportunity to learn from others and discover how to use social media to provide connection and information to those confronting difficult health care issues.