Team Deven

Facebook: Voyeurism or Life Lesson?

As I write this, two people I knew in high school are sitting at home, watching their 14-year old son die from his year-long battle with cancer. He is reading Facebook (FB), he is smiling, he is resting and Hospice is keeping him comfortable as his heart and liver betray his young body.

All I can think about is his parents, his siblings, his step parents and family. Sitting. Waiting. All I can do is imagine what I would be doing if this was happening to one of my children. I can’t even begin to describe my empathy. I can’t contain it. It has encompassed me. It’s made me spoil my teenager, wake her up in the middle of the night just to smell her hair, allow her to watch scary movies in hopes for cuddle time and be lenient on her restrictions.

I feel horrible for this family.

Their journey started about 15 months ago, and they have documented everything on FB. That’s how I know about it. I have never met their son. For no other reason than graduation, I haven’t spoken to his father in 20 years. We weren’t too close, but we ran in the same group of friends. His mom and I were always friendly in school and we happened to reconnect on MySpace in 2006 due to the suicide of a mutual friend. Since then, she and I have exchanged pleasantries online, “liked” each other’s photos and wished each other a happy birthday because FB told us it was time.

But ever since her son received his diagnosis, I feel like I am closer to her than ever, perhaps because we are related by way of motherhood?  Because of the tremendous fight she has waged against this beast of a disease, I feel pulled into her daily life. I am learning about pic lines and PET scans and transfusions and bone marrow. I feel a part of the process, I feel anxiety, I feel helpless and I feel compelled to DO SOMETHING.

I have also gone through phases of feeling that I am intruding on their business, knowing too much, a voyeur, caught up in the grief and crying too hard for a family I don’t truly know. I find myself talking about them as if Angie and I have been bffs since grade school—which isn’t the case. The question has burned into my pillow talks with my husband—am I intruding? Caring too much? Knowing too much? In real life, I don’t “know” these people.

Is FB our new real life?

In the old days, people would communicate births, deaths, weddings, etc., by way of telegram. Then there were stage coaches that delivered mail. Then there were mail trains, and then the good old telephone. As the means of travel became more advanced, surely more people would be contacted. It’s easy to call ten people. It’s harder to send those ten people a telegram. With the introduction of the Internet, and Social Media, it seems that from inception of a fetus, to the first ultrasound, to the birth, we are now experiencing a new phenomenon of sharing. We see the journey of life, every day, from friends, and more interestingly, acquaintances. So should the journey to death be expected as well?

Social Media gives us an insight to others’ lives where we otherwise would never be invited to, nor care to know. Call it oversharing, reaching out for support, and in some cases, attention seeking, there are thousands of personal stories being publically documented every day. As users, we choose to follow or not. As empathetic beings, some of these stories can dramatically affect the lives of strangers and classmates alike.

Without FB, I would have eventually heard about their son’s battle with cancer through friends. I would have felt horrible for them. I would have put myself in their place as much as I know how. I would mourn and pray for…  a day… a week? Maybe less? I probably would have written a check and put it in the mail, finding their address from making a phone call—or text—to a mutual acquaintance. And then, I would go on with my life, removed from the stresses, the reminders, and the photos of a strong warrior boy and his loving family. I would move on. I would go on. Eventually, I would complain to my husband about my nails, my weight, and my hair. I would sulk from the balance in my bank account. My life as I know it would go on.

Instead, there is this Social Media tool called FB. There’s a family who has chosen to open up and share the process, the thrills, the sufferings, the GOOD NEWS: THERES A DONOR! Then, the crushing news—he doesn’t qualify anymore, his body is too weak. GOOD NEWS—the cancer is getting smaller. BAD NEWS—his heart and liver are failing. GOOD NEWS—He was outside today, look at the smile. BAD NEWS—there’s nothing more we can do, we are going home and will keep him comfortable.

I, like many others, am involved. Personally, emotionally, physically, even financially. But I still struggle with the question—is this right, normal, okay?  

When I started thinking about this article, I thought absolutely NOT—this is NOT my place to intrude on this family just because I shared some classes and parties with his parents 20+ years ago. In many ways, FB is like walking on a beach and seeing an endangered turtle that has flipped onto its back. The automatic response is the need to flip him over—to save its life—but this isn’t “natural” and in some cases, the law prohibits one from interfering.

This is not my story. I don’t know this child, these people anymore; this isn’t my place—all true. But I am also the person who would help that turtle out—no matter what the law was. I would try to save a life, because I feel that is right. I would see a higher reason that I would find myself walking that beach, at that moment in time, as if the turtle and I were connected on a spiritual level. I would flip that turtle over, and coax it to the shore and I would wade into the water and make sure it swam to its family. I would consider it divine interaction and I would probably get a tattoo of that turtle to remind me that we need to hold onto moments like that. Watching this last 15 months unfold with this family makes me feel like I am going through this right alongside of them. And I feel a need to help in any way I can.

Apparently, I am not alone. If you bring up Angie or Team Deven’s FB page, you will see many others feel the same way.

There are more than 8,000 well-wishers following Team Deven’s page. There are pictures, videos, and comments from people all over the world, sending their love and best wishes to Deven, and his family. There’s a mother who shaved her head in support of Deven’s plight. There’s an eight-year-old little “Jedi” who was so moved to do something, she held a garage sale and donated the funds to Team Deven. There are photos of Deven’s favorite movie characters, Jack Skelton, and drawings from artists who’ve never met this family. There are people wearing Team Deven wristbands, and T-shirts. Without FB, none of these people would ever know this story. Is this an intrusion, or a beautiful way to say “goodbye”, “we love you”, “we hurt for you”, “we care”?

I suppose it’s up to the family to decide if the abundance of sharing this journey is too much. This way of sharing has been a source of comfort for this family. In their recent posts, the family has thanked everyone, and they feel blessed to be so supported. Here is a recent post:

Many people have said to me that they feel guilty enjoying things while our family is suffering so much. Please know that making anyone feel bad in any way is not my intention. I do however have 2 goals with sharing our story. #1, I share because I want people to appreciate even more what they already have! Play with your kids, enjoy the weather, do things together. All in all, love each other just a little bit more because you never know when that may be taken away from you. #2, I want to teach people the importance of sharing what you have. Give back, not to me in particular, but to anyone in need. Life isn't about just appreciating what you have, but sharing it with the people who don't have it! No amount of money is going to save my son, but donations have given us the gift of more time together. Because of the fundraisers, I am able to spend just a little more time by Deven’s side. It has given both of us a peace that we would never have been... able to obtain without your help. Giving back is not only rewarding for you, but it sets an example to your children. So many people have told me how they share Deven’s updates with their children. Imagine how that will affect them when they are an adult? If just one kid grows up and does just a little bit more because of what they learned from our story, I will feel like it was all for something. Many, many people have taken the time out of their busy days to read our updates and help us out in any way they can. I just ask that you all continue to not take life for granted. Appreciate what you have and try to share it with those who don't. Life can change in an instant!

In my opinion, this part of FB life is beautiful.

To this family, FB has been a source of great support. Late at night, while many are sleeping, Angie posts to FB, reaching out to talk to someone, to get her mind off the beeping machines that she sits next to as her son rests.  She waits and watches and she posts her thoughts—ridiculously positive and selfless thoughts—online. “Thank you all for the support. I don't know where we would be without you...” And people respond. Family, friends, coworkers, first. Then acquaintances and strangers. And she communicates back. And so goes a virtual support system from strangers to family, to friends, and Angie sits in that hospital room and replies and laughs and connects. For a little while, FB is her reprieve. It’s a beautiful thing.

Without FB, Angie would be completely alone in those hours, in that room, with herself and her thoughts. Maybe she would have a magazine or a book, but no interaction. With FB, she is supported, lifted up, prayed with and for—and it has helped her immensely.

I don’t like a lot of things about Facebook. But I love this. I have seen the human experience in a technical world achieved through this platform.

Without FB, those families who suffer with cancer would just be news to me. A story I can’t relate to. Because of FB, I have been educated on how this horrific disease can take a person slowly, painfully, selfishly, and rip a family apart emotionally. It made me angry, sympathetic, and it made me want to ACT. So I did. I, along with my comedy sisters, was able to organize a comedy night and give my high-school-turned-FB-friends’ a night to laugh and forget their fears, and we raised some money for them. One of the most touching things I have seen was a table full of doctors and nurses who came out to support Deven’s family. They are everyday heroes and to know we made them laugh too, well, that was pretty cool.

Without FB, I would have heard that my friends, although divorced now for a long time, had both remarried and Deven has a sister and brothers and step parents. With FB, I see that Deven actually has four parents and siblings who love him unconditionally and get along quite nicely—in fact they call Mia, his Stepmom, and “Momma Mia.” I think that is beautiful.

Through this experience, I have seen the strength of mother who I first met in high school. She was always a sweetheart to everyone. She was kind, gorgeous, funny and carefree. She was never a bully, or a bitch to me. I appreciated that. I would do anything for my friends. Because of FB, I have reconnected with a time in my life where others weren’t so kind. In adulthood, I have been able to give back to her a little of what she gave to me as a teen—laughter. A reason to forget the bullshit of life. Even just for a moment. Through this experience, I have been able to teach my own teenager—be kind to people—to everyone. Because YOU DON’T KNOW what the future holds. But being kind to someone today can come back to help you later. And if everyone practiced that, well, that’s what I call Karma. Make your Karma good.

Without FB, I would continue to post and comment on the meaningless posts and comments about bad days and stupid coworkers, about that guy who drove crazy and the customer service person with an attitude. Because of this experience, I am less concerned with these “hardships” and more forgiving. Maybe the guy driving crazy is an uncle to someone like Deven, crying, unaware that he almost hit someone because his life is shattering around him. Maybe the customer service person just lost her mom. Maybe your problems aren’t really problems at all.

I do believe that Social Media has exposed the narcissist in many. But I also believe that it’s brought out the peacekeepers and the parents. The grievers and the givers. The optimists and the heroes. A show of pure and unconditional love amidst the horrific hand that some have been dealt in this thing called life.

The strength and courage of this family has been a sight to see. The perseverance of love and patience is something magical.

Agree or not, the fact remains that Deven is going to lose his battle with cancer. And at the beginning of this journey, I felt that I shouldn’t be witness to this awful heartbreak. But after walking through it for this many months, my life has changed. I have chosen to spend time with those who want to spend time with me. I make time. I love wholeheartedly. I hug my kids tighter. I get up and kiss my hard-working husband goodbye in the morning and hello at night—even if we’re arguing. I tolerate bad behavior from strangers, and I wish my haters well. And most of all, I pray to a God that I am having a hard time believing in these days.

Because of Team Deven, my life has a new meaning, but I am not ignoring that it comes at an absurd cost. Cancer is the devil. I am a writer, not a scientist. But I believe that Social Media can touch lives and compel people to DO SOMETHING. We need to find a cure. Maybe if enough people watched this type of struggle unfold in their daily virtual lives, the need to DO for others would outweigh the selfishness to HAVE.

Through watching this experience on FB, I see that many of us have cried deep tears; have found and prayed to God, have cursed Him for allowing such an innocent soul to suffer. But through this plight, we have all been able to show a circle of support to a family in need—whether we knew, know or don’t know them. That is beautiful.

My deepest sympathies go out to Deven and his entire family. You battled harder than many could or would. You will forever be in our hearts. Even though many of us have only known you for the past year, we will love you forever sweet boy.