How Social Media Helped Heal Our Community

Social Media is an interesting phenomena. Some people use social media to share what they had for breakfast or what they are listening to while others post vacation photos or clever sayings. Some postings are song lyrics with no explanation that leave you wondering if it was just a song that person liked or if there is something you need to be concerned about. Social media is also a place to learn and share articles, viewpoints, and perspectives with others across vast geographical locations who have common interests. Some people use social media to rant about political opinions and some people do not post anything at all. Choosing to quietly observe (cyber-stalk you might say) the lives of friends and acquaintances. Until recently, my personal interest in Facebook had become more of an observer than a contributor and I found myself on Twitter to learn, grow, and communicate with people in the health care industry. I have a few friends on Twitter where more personal exchanges would occur, but I typically used Twitter on a professional level.  In July, when my daughter passed away, my impressions and ideas on how and who used social media were completely flipped. 

I recall quite vividly standing in my backyard with my family, huddled a few yards away from all the friends and family who came as soon as they heard of Amanda's passing. We were waiting for the coroner to arrive and praying that she would let us see our daughter before taking her body away. My husband, in a protective fatherly panic said "We need to shut down Amanda's Facebook wall." I knew his concern was that people were going to talk about how she died, instead of how she lived.  No one wants to hear, see, or talk about death by suicide, especially the family of the victim.  In that moment I was filled with complete confidence and assurance that her wall needed to stay up. Looking at him and then my two older daughters, I said "I understand where you are coming from, but I am going to have to disagree with you. Her friends are going to need a place to express their feelings, pour out their pains, and share their memories. I think this can be a place for them to heal each other." I asked our girls what their thoughts were and they were in agreement. The wall should stay up. 

Within 24 hours a twitter friend of mine started a prayer chain with others on Facebook and love came pouring in. Over the days that followed, we watched as Amanda's friends and even strangers expressed how Amanda impacted their lives. They shared loss and memories through stories and pictures. If one friend posted a comment that was concerning, ten teens responded with "call/text me now" or words of encouragement. I, personally, took to another form of social media, blogging, to express my emotions. We even stumbled upon a "Choose the Right" (CTR) blogpost that Amanda had written the year prior which became the inspiration for her memorial service that was attended by nearly 1000 people. We wondered if the those attending her service would take her message to heart. that answer was answered almost immediately after her service, when Amanda's Facebook wall was flooded with posts by kids promising to choose the right. Teens vowing to stop cutting themselves, try harder in school, or just be kinder to people. Others sending private messages confessing their attempts at suicide and promising they would never try it again. I have learned over the past several months which messages I should reply to and which ones are meant to be a private message to Amanda. Some messages led to phone calls or long nights of texting back and forth between myself and someone who was on the edge of making a permanent decision. We used Amanda's Facebook wall to share information on depression recognition, self harm and suicide prevention sessions sponsored by the YMCA and a wonderful group called Five Acres. After a couple weeks of messages, wall posts, and other comments our family realized that our youth, teens, and young adults are fragile souls that need help, guidance, and to know they are loved. So we started the process of forming a non profit foundation to keep Amanda's CTR message alive. A Facebook "Amanda Panda's Choose The Right" page was created where people could take the pledge to choose the right by liking the pledge wall. Those that leave their address behind are mailed a free CTR wristband to remind them of their pledge.

In our family community of Monrovia, California, over 2200 people have officially liked the Facebook pledge wall and, with the help of Amanda's friends and other community members, we have given out over 5500 wristbands that have reached from our city all the way to New Zealand and England. Our nonprofit status has been finalized and our website is up. Recently we challenged ourselves to get 2000 page likes by Amanda's 17th birthday. To help with that effort, our local online newspaper "The Monrovia Patch" helped us share our message generating about 40 page likes within the first couple hours after publishing.  Forty may seem like a small number, but every time someone likes our page on Facebook, it shares it in their personal feed for their friends to see, sharing our message with anyone that follows them. 

Through social media, we have been able to connect with other groups with similar interests, banding together to help keep our youth and loved ones ALIVE. I don't know what we would have done had this occurred in a time where technology was not available to allow these opportunities to share, communicate, and heal each other.  Our daughter, Amanda, was the 5th Monrovia High Student to die by suicide in the past several years. Our community could have easily crumbled by so much loss, but instead, we have banded together to help make sure we do not loose one more precious soul before their time. We will be okay. We will help each other make better choices and together we will heal. 

Live wisely and Always Choose the Right!

What do YOU want?

No one wants to think about getting sick or making end of life decisions for themselves or someone they love, but getting sick happens and death will eventually happen too. Questions about how you want to live your life, what kind of care you would like to receive, and the extent of what measures are to be taken on your behalf should be addressed while you are healthy and alert, not in a moment of desperation or left to family to determine what YOU would want. Now I know you are probably thinking, "Wow, Kristen is being really morbid and depressing", but I have always been a strong believer that we should be the ones in control of our health care. I remember when I worked on the Health Plan side of KP and I would go present at health fairs and employer events. I would talk to employees about why they should choose Kaiser Permanente and how to navigate this big system of ours. I would always tell them that if they have a bad experience, they need to let us know about it by contacting member services. If they don't feel like they connect with the provider they were assigned, they can ask to switch to someone else. This is THEIR health plan and they must have a voice in the care they receive. I've also wondered why we haven't made Advance Directives part of our enrollment packet. Some may argue that it sets a tone of "you might die with us", but I think it can be approached it a way that says, "We want YOU to help us make these very important decisions. Tells us how you want us to care for you."

So now you are probably thinking, "No one just randomly starts thinking about POLST and Advance Directives, this must be because Kristen's daughter just died." My answer is yes and no. Yes... this has been on my mind a lot since my daughters passing and I'll explain why in a moment, but no... it isn't random, this is something I've thought about for years. When my late grandmother was in her 80's, she and I became pen pals. Writing letters back and forth became a weekly thing. As her health slowly deteriorated, her letters included words to me about how she wanted the end of her life to be handled. She did not want drastic measures taken on her behalf. She was quite clear that she did not want to be put on life support or have her life prolonged if the quality of life was poor. She had already arranged for a plot next to my cousin where she wanted her cremated ashes to be buried and reminded me of that in almost every letter. My grandmother lived until she was almost 98 years old. She had a high quality life and wanted to leave this world with grace and dignity. When my aunt wanted to hold on to her even longer by requesting extreme efforts by her medical team, I was able to provide the advance directive that my grandmother had given me and my nana's wishes were respected and upheld. Those letters and that advance directive gave me and my sisters the peace of mind we needed to make the right decisions for my grandmother in a time when the heart begs you to do something completely different.

So how does this relate to Amanda's passing? When Amanda was 12 years old she was very ill and spent six months of her 7th grade year in and out of the hospital. She was so sick that there were times when her father and I weren't sure she was going to survive her illness. One day I came home from work and her older sisters, who had taken a semester off from college to help take care of her, came to me in a panic because Amanda had written a Will. My heart skipped a beat to think my 12 year old daughter thought she was going to die. I went to talk to her about it and she looked at me with surprise and laughed and said, "Mom... don't you know that you are supposed to write your Will when you are healthy? The people on TV said it's called a Living Will and you should have one so people know what to do with you and your stuff." With a deep sigh, I realized my daughter, who had become a tv  infomercial addict during her illness, had the clarity and insight that most adults don't think to have. She understood the concept of "letting people know your wishes". When she passed away in July, her sisters and I sat together and pulled from our memories all that we could from her will.

• Her clothes were to go to her friends - if we could find someone who could fit in to her 00 pants - she added with a smiley face.
• She wanted her dog to go to her sister Breanna (who politely said we could keep him)
• Her make-up and nail polish collection to her sister Lauren
• Her music to her cousins
• And along with all the other things on her list... in a final note to her dad and I she wrote "Dear mom and dad... Enjoy the memories and my stuffed bunny".

This took a huge weight off my shoulders, because I knew what my daughter would want us to do. We called over a couple of her 'tiny' friends and had them do their back to school shopping in Amanda's closet. Amanda, being an extreme fashionista, had an amazing wardrobe and she was able to bless her friends who weren't financially able to go back to school shopping on their own. I was able to release her belongings with the assurance that I have truly been left with the most beautiful memories and that those are more important than any material goods.

Amanda also taught me another lesson about the importance of making your wishes known. She was sixteen years old and had one month left to go before she could get her drivers license. Her 23 year old sister took a little bit longer to get her license and didn't make that move until a couple months before Amanda's passing. Amanda went with her sister and her dad when Breanna took her drivers test. Amanda saw Breanna filling out an Organ Donor card and asked what that meant. Breanna and her dad explained that it means when you die, you are offering to give some of your organs to others so they can live or improve the quality of their life. Amanda, without any hesitation, asked if she could sign up. Once again, she made her wishes clear. So, after learning of her death and knowing there was a small window of time for organ donation, I asked my friend, Dr. Mark Eastman, who had come to our house immediately after hearing the news, if he would ask the coroner if organ donation was a possibility. He looked at me and said "Are you sure?" and I, remembering the conversation with my daughter not too long ago said, "Yes... It's what she wanted."

We received this letter a few weeks ago from One Donation who handled her organ donation.

I realize that Advanced Directives are not the same as writing a will or becoming an organ donor, but the concept is the same. It is about making your wishes clear and letting others know what YOU want to happen to YOU. I believe, it is one of the kindest things you can do for your loved ones because you take away the guilt of having to make those tough decisions. It provides peace of mind for those who may be left to act on your behalf because they know you and what you want. 

So I leave you with this thought... Are you prepared? Have you made your wishes known? What do YOU want?

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