"It's a fragile thing, This life we lead,
If I think too much I can get overwhelmed by the grace by which we live our lives with death over our shoulders" - Eddie Vedder "Sirens"
"I never thought it would get to this point", Ron said as we hugged in the reception line after Amanda's service. I nodded my head in a vain effort to acknowledge the pain and loss. I didn't have the words. Almost 9 months to the day had passed since we gathered in the park to take photos. Amanda's quarterly scans a week prior found a spot on her tibia, a relapse of the neuroblastoma that was in remission for two years. When I first heard the news from Michelle I experienced the same sense of vertigo I felt 22 years ago. Diagnosis. Treatment/surgery. Remission. Relapse. Experimental treatment. Devastation. My mother lost her battle with cancer at the age of 43. As with Amanda, it was much too soon.
When I received the phone call from Michelle to do the photos I immediately felt a weight I haven't felt before when shooting. I'm typically a bit nervous and anxious prior to taking photos because in my mind I'm convinced nothing will work and I'll disappoint those involved. This was different, though. I understood what the stakes were and the whole experience took on a completely different level of importance.
I've often pondered the importance of taking photos and I've run through the gamut of what it means to take "important" or "significant" or "artistic" shots and I've never come to any sort of conclusion about the end result and what makes it worthwhile. In the end I suppose my only criteria is that I hope to strip away all of the pretense and capture the essence of the person and/or the moment. The camera is simply a passport, an invitation into the most intimate moments in a person's life. If you allow it to happen, it's a way to tell a person's story.
I didn't know much of Amanda's story prior to that day last September. I knew about it peripherally because Nikki and Michelle were in the same book club for a time, but I had never spent any time with her. In short, her clinical story goes like this: She was originally diagnosed at 16 months and underwent surgery and chemotherapy, was in remission for about 2 years and then relapsed in August of 2013, and succumbed to the disease in May 2014. However, no clinical summary can encapsulate any of us, and it certainly didn't encapsulate Amanda.
As I sat through her beautiful service a picture of the real person emerged and I learned so many things about this sweet spirit. She loved animals, she loved to dance, she loved to play, she called Ron her hero, and she loved Elton John. I heard many stories about these and other things, and I heard a lot of stories about her strength.
Three of her caregivers (therapists) got up to speak and related stories of her strength and her spirit and how she pushed forward despite the pain she surely must have felt day in and day out. Due to the disease, she was developmentally delayed and she often communicated via sign language and gestures. When she accepted a caregiver as worthy, she grabbed their hands and pulled them to her heart, or wrapped them around herself, signaling she wanted a hug. I received similar acceptance the day we took photos.
In the photo at the top of the page, Amanda gave me true photographic access, the kind all photographers strive for during the process. Prior to this shot she smiled and did her best to be interested, but that was mainly because her parents were involved and giving her guidance. She could see the nearby playground and naturally that was what she focused on. Upon seeing this, I recommended we go spend some time there to let her play. After 20 or so minutes at the playground we moved over to the grass and without prompting, she sat down in the pose you see. There's no way I could have posed her better, nor could I have coaxed a better gesture out of her. I like to think she was thanking me (and us) for going to the playground, but who knows. Once thing is certain, though, the pose was her choice. She let me in.
In addition to being verbally delayed, the disease made learning to walk a big challenge as well. The therapists related stories of her determination to walk, spurred on by the reward of toys and the desire to walk down the hall where the other kids were playing. On the day we took photos I could see it wasn't easy for her to walk, but she was determined to do it, especially with her parents holding her hand.
Ron and Michelle held her hand literally and metaphorically through the entire process of her treatment. Their background in biology made a huge impact in providing input and feedback to her doctors and making sure she had the best treatment available. I was awed by their strength as they each stood up at the memorial service and told all of us what Amanda meant to them. They were eloquent, funny, touching, and strong. They talked about her personal quirks and they talked about her treatment and how they plan to raise funds for neuroblastoma research moving forward. In doing so, they plan on continuing to tell her story in the hopes it will help others.
In the end, I suppose that's what I try to do with the camera. I try to tell other people's stories and I hope to gain insight in the process. Although I'm overwhelmed with a tremendous amount of sadness at her passing, I'm also honored to have been just a small part of her story. She'll never know it, but she taught me some things, she gave me insights I wouldn't have had before, and she gave me clear focus as to what matters. As I continue to walk along in this fragile existence, I'll take those things with me and I'll tell her story to anybody who will listen.
A fund has been set up in Amanda's name at the St. Baldrick's foundation for Pediatric Cancer Research.
