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Social Media Summit Scholarship Essay - Katherine Kraines

Posted by @LeeAase in Brain & Nervous System, Aug 8, 2011

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

http://socialmedia.mayoclinic.org/2011/07/26/patient-caregiver-scholarship-contest-for-social-media-summit/


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.

Tags: Scholarship contest

Nanna9, tfauls, Therese1 and 72 others like this
bobbinoble

Posted by @bobbinoble, Aug 11, 2011

This is a beautiful story about a young teenager who dealt with her father's illness with grace and dignity. I hope Katherine is able to obtain a scholarship as the social media experience will help her develop an online community for teenagers who are caring for a seriously ill parent. Thanks for sharing, Katherine!

klkraines

Posted by @klkraines, Aug 13, 2011

Thanks - your comments meant so much to me!

Posted by Anonymous-130d997b, Aug 13, 2011

A poignant, beautiful story that captures the difficulty teens face in finding support - both among their peers and adults - when they are faced with a medical crises in the family. Adolescents are often the ones called upon to be caretakers or to substantially help out, and we often mistakenly assume they are old enough to handle it all without any support. Young children are much easier to reach out to and we often are reluctant or feel uncomfortable approaching teens who are suffering. It is a wonderful idea to use social networking as a way to connect teens who are going through situations like this. It will allow them to express their inner feelings on a platform they feel comfortable with and which affords them some privacy. It also is a great way to alert them to resources within their communities they can access more directly. Thanks for sharing your story Katherine.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 13, 2011

Thanks so much for your thoughtful response! The irony is that is easy to it is assume that teens/young adults don't need extra support just because they look like they are doing OK. When you are 16 with a sick parent who do you talk to about how awkward it is to help your mother go to the bathroom or how hard it is to spoon feed your father? The teen years are fraught with emotion so adding a family illness into the mix only makes it more complicated. The very fact that not many teens face this in any one community makes the need for an online resource/community all the more important.

Claudia725 likes this
candaceherring

Posted by @candaceherring, Aug 14, 2011

This is beautifully expressed. I know you have other times in your life that you have been caring and sensitive when people are sick. Luv ya. Candy

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 14, 2011

Thanks for the encouragement Candy!

pgentile

Posted by @pgentile, Aug 14, 2011

Using social media as a way to connect to teens confronting difficult health issues is a great idea. So many teens now come from broken homes and often illness breaks up families. Caring for a parent or sibling who is terminally ill, or teens themselves facing serious illness, becomes only part of the problems teens can face.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 14, 2011

Thanks for your comment! I hadn't thought about a teen who might be caring for a parent in an already single parent situation or a divorce where the support from another parent may be lacking or just not there. Wonderful point!

Claudia725 likes this
claudia725

Posted by @claudia725, Aug 14, 2011

Bravo Kath! I am overly my excited at the proscpect of utilizing technology via social media to reach an 'untargeted market of child and teen caregivers'.

In effort to assure your scholarship committee that I am qualified to write on behalf of all caregivers, I briefly mention that although I am an attorney by trade, I have played the care-giver role most of my entire life.

I was 9 years old when I became the primary care-taker for my ill mother. As life has progressed, and after marriage, I have cared for a quadrapeligic mother-in-law for 7 years in and out of nursing care. Upon her death, I became the primarty caretaker to an 82 year old father-in-law who lived with me for nearly as long. He sufferred from every metabolic and cardiac issue of the obese and aging. During these years, my own mother aged and needed more care. My daughter, now 12 years old, contributed to caring for my mom, my mother-in-law and my father-in-law and picked up learning how to look out for me too. These have been daunting tasks in my life and have influenced my daughter's life too.

As a lifetime caretaker I completely empathize with your struggles and the need for support from a world that doesnt know the need exists. Further, as an adult dealing with challenges to my health from systemic lupus, my daughter, has faced similar caretaking issues assisting me during periods of my illness and/ or hospitalizations.

I am also acutely aware of how relevant a role social media would plays in the lives of teens. My beautiful daughter has recently received a dignosis of scoliosis, I witnessed her running to on-line research to learn of her condition and try find a place on-line to vent about her fears of illness and hosptials. The fear stems from her experiences as my caretaker in and out of hospitals. I am positive that if an on-line chat, blog, website or other social media venue existed, she would be exploring her thoughts and feelings there.

Our youthful caretakers often walk in a world of secretive silence. To learn how to reach this audience where sharing and understanding and healing can occur is nothing short of brilliance!

In closing, I dont know of a person better suited to bring this issue to light. I have had the sheer privilge of calling Kathy my "information guru", my secret-keeper and my dear friend. My fingers are crossed that our teen care-givers may be blessed to grow emotionally and spiritually in a path created under the wisdom and guidance of Katherine Kraines! much, much love and my fingers and toes are crossed! Claudia Englisby

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 14, 2011

Claudia, thanks so much for such a wonderful post and for sharing your own caregiver story and how you daughter has been impacted! I think you should have written an essay for this contest yourself. It was so helpful to hear how Kelly went right to the internet to find information on her condition - and her need for a safe forum to share her worries and to find comfort and support from her peers. While adults may turn to social media for information - today's teens turn to it as their community.

Claudia725 likes this
alanebearder

Posted by @alanebearder, Aug 15, 2011

A statement that really resonated for me was "We all have stories that have shaped us. Often we just need a safe place to share them." I agree with you that teens in particular do need someone in the know to moderate that conversation - to help direct toward solutions and away from misinformation, even if it takes the form of resources and snippets of facts that frame the input area.

I truly hope that you'll be awarded the scholarship and are able to build this initiative as a result -- what better way to shape the future of healthcare than to guide and support our teens??!! Let's go Mayo!!!

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 15, 2011

Thank you Alane, as we all know social media is wonderful but sometimes the information or the conversations aren't as helpful as they could be. I would love to find some experts who deal with these issues with teens who might be willing to participate and contribute. One step at a time!

Claudia725 likes this
clairesantosrn

Posted by @clairesantosrn, Aug 15, 2011

Katherine, your essay hit me right in the heart as I thought of the many teenagers who are forced to grapple with major life crises without much guidance or support. It's wonderful that you intend to use your experience to help others. Good luck!

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 15, 2011

Thank you Claire, having this idea affirmed from your nursing perspective is wonderful!

Claudia725 likes this
leighcw

Posted by @leighcw, Aug 15, 2011

Kath-You've done a beautiful job expressing your personal story, and demonstrating the need for giving young people a way to share and receive support. The grace and maturity with which you handled those experiences is both incredible and inspirational. I sincerely hope you receive this scholarship...there is such a need for teens to be guided and supported during times of personal or family/ friend health scares and crises. Thank you for sharing your story.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 15, 2011

Thanks Leigh! There was no internet when I was struggling through this and really no way to connect with peers in similar circumstances. As a teen part of you wants to talk about it and part of you doesn't - so being able to connect and be somewhat anonymous helps with both needs.

Claudia725 likes this
jacquelinab

Posted by @jacquelinab, Aug 15, 2011

Katherine,

Thanks for sharing your story. As a mother of an "almost teenager" your idea of an online community geared specifically to teens dealing with illness and death in the family is a terrific idea. I believe many teens would reach out to this type of forum where they could share their feelings and gain a support system.

I hope you are awarded the residency!!

Best of luck,
Jackie

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 15, 2011

Thanks so much Jackie - getting feedback on this idea is so important. Your input and that of others is helping to confirm that this is a real need and worthy of pursuit.

Claudia725 likes this
marysc

Posted by @marysc, Aug 15, 2011

Kath, even though I have heard this story before, I was impressed anew with what you coped with as a teenager. That certainly explains your personal strength and sunny, upbeat attitude!

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 15, 2011

Thanks Mary, I attribute my coping to my mom's strength and ability to see the cup as half full even in the darkest days.

Claudia725 likes this
therro

Posted by @therro, Aug 16, 2011

How very gracious of you to turn your experiences into compassion for others. It is a beautiful way to honor the memory of your father and help teens going through similar situations to know that there is support during such difficult times. Thank you for sharing your story.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 16, 2011

Thank you for your words of encouragement!

Claudia725 likes this
mansfieldr

Posted by @mansfieldr, Aug 16, 2011

Great essay and good luck! Social media is indeed the link to younger crowd.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 16, 2011

Thanks for your vote and input!

Claudia725 likes this
rdp

Posted by @rdp, Aug 16, 2011

A great application for social media. Your empathy is an important component in this tool for teen caregivers. The resource would be a tribute to your parents, and your compassion.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 16, 2011

Thanks so much for your wonderful comment!

Claudia725 likes this
sanlee

Posted by @sanlee, Aug 17, 2011

Hi Katherine, As an older adult who is an almost full time caregiver, I realize how important a support system is. It is really great to have a plan for teenage caregivers. When I was in college, one of my friends had to become a full time caregiver to her mother who had terminal breast cancer. She had no support and she could have profited from these kinds of information that you can discover in your project.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 17, 2011

Thanks so much for your comments and for sharing about your own caregiving and that of your friend. Support is so vital for all caregivers. I hope you have the support you need as well!

Claudia725 likes this
mhaislip1

Posted by @mhaislip1, Aug 17, 2011

Kath, your essay is wonderful and really shows your true spirit. You are so deserving to win this scholarship! Thank you for sharing your story and always thinking of others. While reading your essay, I couldn't help but think of all of the thoughtful times you have given me support recently. Thank you! I think your idea is brilliant and much needed and you are the perfect person to make it happen.

Claudia725 likes this
klkraines

Posted by @klkraines, Aug 17, 2011

Thanks so much, Mal! As you know, being faced with supporting a parent who is dealing with a life changing illness can be totally overwhelming - especially when you are a teen or young adult. It adds an unexpected new level of responsibility to life going forward and can change the parent/child dynamic, which can be confusing for all!

Claudia725 likes this

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