"Truth is such a rare thing" -Emily Dickinson

For the past 3 years, the vast majority of words spilled into this space have been about my daughter, my family, and myself. But today  am focusing on the work of another photographer whose work is something I admire and was not able to do when I was in a somewhat similar circumstance. I'm sure many of you have seen this because it has been floating around for a while, but I wanted to stop and take a look at it from the perspective of both a photographer and as a person who spent a lot of time watching things I could not control in regards to my brother's leukemia. Before I was a photographer,  I was a sister and this is that story. My brother and I are very close despite the fact that we are nearly 5 years apart. Half of that is because he is mature for his age, the other half is the fact that I am immature for mine. When he was 7 and I was on the brink of 12, he was diagnosed with leukemia for the first time and nearly everything in our lives changed. Everything except for Spencer. Physically, yes, he changed. The affects of chemotherapy, radiation, exhaustion and disillusionment are heavily taxing on the human form. As a person he remained sweet, sensitive, and gracious. Our new normal was anything but normal and most people did not stick around to get used to our new routine, but the ones that did are the ones that counted. Those connections are ones that time and space cannot sever. His battle was long and spanned over half of his life at the time until finally in 2008 he received bone marrow from across the Atlantic Ocean.

The story portrayed in these pictures is not Spencer's story but a story of another family in another state grappling with the task of taking each day one at a time. This is a story about a man who loved his wife indefinitely and needed to record both their new normal in its endless and painful monotony and the glimmers of happiness that spread soft and warm over everything like light in the golden hour. To see all the pictures in this series please check out Angelo's website, a beautiful and haunting portrayal of one woman's battle with breast cancer.


A letter to the photographer, Angelo Merendino :
As  fellow photographer and someone who watched my little brother, Spencer,  battle cancer for 10 years before he finally received a life saving bone marrow transplant, these pictures meant so much to me. I made the switch from film to digital in 2008 when my brother relapsed for the second time with the knowledge that time is fleeting. Cliches are cliches for a reason and that reason is that they are true. When it came down to it, I couldn't make myself  take them. I took my camera with me everywhere and I would occasionally snap a few photos but those photographs or the lack there of, tell only one story. That story is this: I was afraid to share these moments with other people because I was scared if my brother did not survive that was how he would be remembered. Spencer survived and lives on as a fedora-wearing, girly-beer drinking, niece-loving, God-fearing, funny as hell twenty-one year old fine art student and I'm lucky enough to share a wall with him. But, seeing these pictures made me realize that I was wrong. The only shame that comes with cancer, is the shame that we don't yet have a cure for it. So often people will look at a person with cancer, as the cancer itself but cancer does not define someone, it is but a part of the complexity that is the individual.  Jennifer is beautiful from the beginning to the end and the honesty she allowed you to share with us in an insurmountable gift. The legacy you have created and she has left is not a white surrender flag but a proclamation to actualize the human experience. It teaches us to embrace love, tell our stories, make connections, and live openly. It also shows us the power of a motivated person with a camera and a story to tell. There isn't  photographer out there that would look at these pictures and not say "This is why we take pictures". Mr. Merendino, you did more than take pictures of your wife's struggle with cancer. You gave her an opportunity to share her legacy. The legacy which you and your families and friends were aware of, but the rest of us were not. So even though I never met her and may never meet you, I love you both. For being brave and vulnerable and honest when it may have been easier not to . For being an example of love, affection, and authenticity in a world that often needs a reminder of this kind of beauty.

All my very best,
Rachel 

"Gratitude is the fairest blossom which springs from the soul." -Henry Ward Beecher

While I'm not quite ready to share my thesis outside of the protective sphere of my academic bubble, I would like to share my greatest thanks page. So many people and places and factors have come together in an almost magical fashion to make it possible for me to finish it. It seems unfair to myself and to everyone somehow involved, to leave these things tucked away withing a massive paper I'm still holding closer to myself that I originally intended.

Special Thanks…
…to my husband, Guy, for acting as a sounding board even when you had no idea what I was talking about and providing an endless supply of coffee and foot rubs. If that’s not love, I’m not sure what is.
…to my daughter, Harper, for allowing me to once again see books from a child’s perspective, being the Tinkerbell to my Peter Pan, and reminding me to embrace whimsy at every possible opportunity.
…to my parents for supporting me in every possible way and referring to me as your “forever student” with pride and affection.
…to my brother, Spencer, for being my study buddy, dragging me out of my cave for our Tuesday night movie dates and the countless Star Wars marathons.
...to my family, by blood and by choice, for saving me from my intellectual insecurities, fielding late night text messages, and encouraging me to do the stuff that makes my heart beat a little faster.
…to my professors, for imparting your knowledge and providing a learning environment that allowed me to find my calling within the honorable profession of librarianship.
…to my fellow Spartans, for sharing your lives, your studies, your aspirations, and your distinct viewpoints with me.
…to all the authors who created the characters I fell in love with, for giving me friends when I had none, worlds to visit from inside the walls of my bedroom, and books worth protecting.

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. ~Anne Lamott

Harper,
You still shock me. That you live and breathe and laugh and cry startles me. Soon I will be finished with my master's degree and I will have to get a job. I know it is for the best; I want to give you everything you need and those things you so desperately want, at least the ones that will give you opportunities to do what you love and be. Despite this, I find that I am already mourning the loss of our seemingly endless time together. These last 26 1/2 months have been such a graceful thing full of many many mistakes on my part, but more so a lot of learning. I still don't know what I'm doing and for that I feel the need to apologize. For better or worse, you are the first (maybe only) child which mean every single day is uncharted territory. We try to do our best, even if that means one too many time outs. My patience runs thin, sometimes I bark at you instead of biting my tongue. Secretly, your insolence delights me. I'm not sure I will feel the same way when you are 15 and not quite as innocent, but for now I frequently find my mouth quirking as I scold your bad behavior. You are stubborn but I think someday that will be an asset. Every time you do something "bull-headed" someone undoubtedly turns to me and says "I wonder where she gets that from" and of course they blame me but I find pleasure in knowing that you will stick up for yourself, the people you love and the things which you believe in.

We start each day as a new thing, fresh and palpable, knowing that so much can be in a short amount of time and that time it turns out is  more of a gift than sometimes realized. Lately I find myself spending more time ignoring the other things I need to do so I can hold you. It not a sacrifice, just a fact. Someday, you will outgrow my lap. At the rate you are growing, you are going to be a least a few inches taller than me. Even so, I hope you are never too old to crawl into bed next to me. Next week you are spending a week bouncing back and forth between both sets of grandparents. A week. What was I thinking when I agreed to that? Well, I was thinking I need to finish my thesis. I'm pretty sure its the last time anyone will have you to themselves for an extended period of time. Time is fleeting- cliche but also true. Four years ago you were a thought, a whisper in the dark about baby clothes. Three years ago you were a poppy seed just beginning to be. Two years ago you were a newborn baby, still fresh and folded up with the memory of life on the inside. One year ago you were just learning to really walk, unsteady at first, but more sure of yourself everyday. Now, you are you and you tell me what you need, who you are what you love and what you don't. Please know, I love you desperately, more than I ever thought I could love a single person and I want everything for you.