Teva Harrison shared her journey with cancer in this memoir, In-Between Days. Whether you are living with cancer, caring for someone who is, or simply want a different perspective, this book is worth your time.
It is different from other memoirs I’ve read in three notable ways.
1. It’s short. The page count is 163, because not every page is packed with text, it is an easy read. Easy in the sense that I didn’t have to reread passages because I couldn’t understand what she was saying - I did reread many passages because they were jaw-droppingly poignant.
Teva wrote this as though she were talking to a friend. It’s warm, intimate, and vulnerable.
2. It’s illustrated. Every other page is a drawing that depicts an aspect of Teva’s life with cancer. This drew me into her story ever further.
3. At the end of the book, Teva is alive. There is no epilogue that explains when she died and what the process of completing the book for the publisher was like.
I dont want want to take away anything from the experience of reading this, so I’ll share just a few things I found most valuable.
Teva’s diagnosis happened when she was 37. She lives with advanced metastatic breast cancer, which is currently incurable. In the preface she explained how beneficial it was for her to write and draw about her experience; her hope is that sharing it may lead to conversations that have been too difficult to begin.
The ability to start hard conversations is one of the things I prize most about photography.
Teva presented the book in three parts. The first part is diagnosis, treatment, and side effects. The second part is marriage, family, and society. The third part is hopes, fears, and dreams.
She wrote about how metastatic cancer is a lot like playing Whac-A-Mole. She wrote about managing her pain, and not. She wrote about her granny’s legacy and influence in her life. She wrote about how wearing a seatbelt in a car was an act of hope.
I have witnessed many of these conversations in other families and yet this book broke me open. Teva’s rawness invited my own. The amount of vulnerability and trust in her pages caught me off guard, and I’m so glad it did. It started at the beginning, in the prologue.
Now that I have cancer, I exist entirely in the in-between spaces /
So few words and so much meaning. She ended the prologue thusly.
And so I take the spaces nobody claims and I occupy them in the best way I know how: living life with a sense of wonder and delight.
Becoming acquainted with mortality has certainly taught me how to live. Teva graciously shared her experience with exactly that. It is heartbreaking and hopeful, crushing and uplifting, maddening and humorous.
Just like life. Just like illness. Just like grief.
It's time to reveal the most impactful photograph of the year for 2017.
I won't show you the photograph, and that may seem strange. I won't share it because I want to preserve this family's privacy. That is one of the elements of this work that is most important to me, and families tell me it is one of the reasons they ask me to be with them. They know their worst day won't show up in social media unless that's what they want.
So I'll tell you the story behind this photograph, and I'll share something else from my time with this family instead. Do you have tissues? I'm grabbing mine, because reliving this moment is emotional for me. I know nothing of the pain this family lives with on a daily basis.
She was four months old when I met her. She smiled and wiggled, and she made that adorable gurgling laugh when she was pleased. Her parents had learned that her life expectancy was about 18 months due to a rare genetic disorder that attacked her nervous system. I saw her every other month or so until just after her third birthday. That was my last visit with her family before her funeral.
That was the day her parents elected to withdraw life support.
One month earlier she experienced difficulty breathing and had been receiving assistance since then. During that month, her parents talked about her life, shared stories, laughed, cried, sang to her, held her, and made peace.
"The length of her life was never tied to her impact. Even one day, one hour, would have changed us forever," her father told me.
Her mother called me and whispered into the phone that it was time. While I couldn't make out all of her words, which were few, I knew what was happening. We had talked about this. I promised I would be there if they asked.
The room was nearly unrecognizable without the constant pfffff of the ventilator and the beeps and peeps of the monitors. I could see her gorgeous, pale face; her cornflower eyes looked relaxed and peaceful. Mom and Dad took turns holding her, rocking her, stroking her, kissing her . . . all the things they had always done.
These were the last times. They meant everything.
After nearly an hour of being without support, she was tired. She smiled a little, looking directly into her mama's eyes, leaned her head on her shoulder, and exhaled one last time.
The instant following is the photograph of the year for me.
Mom clutched her little girl in a bear hug, grasping her left forearm with her right hand. I watched her knuckles and fingers whiten with the intensity. Her daughter sat on her lap, facing her; her little head tipped down, tucked just below Mama's chin. The small arms reached around Mama, where Dad was holding her hands. The three of them sat, nestled together, on the hospital bed that had been home for so long.
Dad's forehead dropped against his wife's left shoulder. I could see his shoulders heave with silent sobs. His legs came around either side of his wife and his knees and thighs turned in, seeking every bit of physical contact they could find with this forever changed family. His hands cradled those of his daughter, his thumbs resting lightly atop.
Mom's face is the focal point.
Her eyes squeezed shut. They crinkled and turned down while her pursed lips and taught cheeks fought against them. Tears seeped out of the corners, racing down her cheeks to dangle off her upper lip before they took their final dive down to her precious girl's lowered, forever still head. Her nostrils flared at the moment she inhaled her first breath without her daughter.
Her face was the most stunning combination of love, joy, anguish, gratitude, and uncertainty. I will never forget it.
The end of the year has come. Our trees of life carry on with adding new rings of growth.
This year I practiced more of what I so often encourage others to do.
Be gentle with yourself.
No one loves you more. No one relies on you more. No one has more riding on the relationship.
This is one of the most difficult things to realize during grief, whether it is active caregiving or mourning death. The more I see it done well, the more I realize how much I have to learn. We are all learning, right?
Facing a new year with holidays, birthdays, anniversaries, and milestones that are . . . well, stagnant, for lack of a better term, is a bittersweet place. If only we could go back. If only things hadn't changed.
Trees go through rough years, too. They experience droughts, wind storms, extremes in temperature, and fires. During acute recovery those trees don't grow much. They add the absolute minimum to their trunks, and they may not produce flowers or a heavy canopy. They may lose leaves.
These trees put their energy into growing down. They expand their roots. They create anchors for themselves that are stronger and broader - roots that can outreach anything that happens above the soil. It doesn't look like they are doing much, and yet they are building safety for themselves with work that is invisible to the rest of us.
I bet you are, too.
If 2017 was a heavy year for you, maybe it's time to look at your roots. It's okay to allow yourself the space and time to expand them. Anchor yourself. Maintain your connection with your loved one and use it to grow. What good can you carry forward to create a lush tree canopy that adds to the beauty of the world?
What will your ring for 2017 say?
There is a person who approaches me at every event where I am a photographer. It's a different person each time. The intent is the same.
This person really wants to be a "real" photographer and wants to pump me for information with questions or demonstrate knowledge by quizzing me or slinging loads of jargon. The conversation almost always heads to "once I upgrade my camera my photos will be amazing."
This person arrived at my photography event yesterday. He quizzed me. He wanted to know what I thought of his gear. He told me that when he upgrades his photos will come together. He's still having a little trouble with focus and exposure - that must be the lens.
This image came from my iPhone. I did a simple B&W filter. There is nothing fancy here - I couldn't adjust much of anything. The Boy was in the right place at the right time and I couldn't let it go. I'm glad I didn't.
Amazing photographs do not come from a camera. Best-selling books do not come from a computer. Evocative paintings do not come from a brush. The cameras, computers, and brushes are tools. It's how we use them that matters.
Every person who uses a camera is a photographer in the realest sense there is. Professional photography may be out of reach for a while. We all start at the beginning, and when progression matters to us we continue. I'm not a "good" photographer because I have four camera bodies, shoot film, or use prime lenses. I keep learning about the science. I practice each day. Most importantly, I value emotional connection over technical mastery.
As far away as I was from my son in this moment, I was connected with him. I felt like I was seeing him in an honest way. He allowed me to witness his life. While I may have had more options with a "real" camera, I couldn't have done much better than this.
It's not about what we have. It's about how resourceful we are and how well we use what is available. It's about how we love and listen. It's about how we connect.
The tools are secondary.
The President of the United States has been in the news this week because of a conversation he had with widow of a soldier who died in an ambush. I have no comment on politics or policies; I'd like to share what I've seen, heard, and experienced repeatedly.
Reason doesn't comfort.
There is no explanation, logical or not, that takes away even a tiny piece of the shattering heartbreak of death. There is no amount of reason that soothes mourning or grief. There are no words that have a magical "feel better" property.
Why do we say these things? Why do we try so hard to say the right thing and then fall flat?
We are uncomfortable being with people who are experiencing tragedies. We don't know what to do or say, so we say what feels right. We say what helps us to feel better, and that's often an explanation of why everything is "okay."
He's in a better place.
It was her time.
At least he's no longer suffering.
As many bereaved people have said, these well intended comments that explain away the pain of loss offer no comfort. None. It's hard to appreciate a better place when it's not here. It's hard to appreciate the right time when it means less time. And while the end of suffering for one is a wonderful thing, it's hard to be grateful for that while drowning in a different kind of suffering.
Could we change the language of grief? Could we change the beliefs about and understanding of it? Could we start talking about it with each other?
Grief isn't linear. It doesn't care about logic. It can't be explained away, just as death can't be explained away. It must be felt. When we say things that are more reason than heart, we deny the emotional connection that we need. More importantly, we deny the emotional connection and support the bereaved needs.
We can change the conversation, and the President just opened a door for us. People are listening, whether they support him or disparage him.
Let's do better. Let's make safe spaces to feel. Let's have difficult conversations.
Let's leave reason and logic out of this grief stuff.
We live in a sea of pictures. In the course of an average day, a social media user sees a steady stream of snapshots of vacations, the irritating guy on the bus, cute expressions babies and toddlers make, dinner, the sofa the dog destroyed, and lots of selfies. Social media and mobile devices have given us the ability to rapidly document and share every nuance of our lives with friends and family, and I admit I enjoy seeing images from people who are important to me.
How much is too much, though? At what point do we transition from images that connect to images that overwhelm?
InfoTrends forecasts that people will take 1.3 trillion digital photographs in 2017, and 87% of those will be captured with mobile devices (that's 79% for phones and 8% for tablets). In 2010 the total number of images was 0.35 trillion. Oh, and these numbers exclude professional photographers, by the way.
Photo technology has become so ubiquitous and simple that we've lost what is most precious about photography - connection. Digital files have become less valuable and more disposable because they lack connection. The Professional Photographers of America (PPA) reported that 67% of people stored their photographs only digitally. About 70% of people no longer create or maintain photo albums and more than half haven't printed a single photo in the past year.
When was the last time you printed photos or created an album to share? Of the last 100 pictures you've taken, how many of them are meaningful to you? How are your capturing the stories that go with those photographs?
We are in danger of losing this generation. We are losing our connections with our past and leaving behind very little that is archival. Digital storage is not archival - technology changes so rapidly that storage methods become outdated after a few decades and the devices that once read and stored those files are no longer available. Museums keep things in hard copy for good reason.
One of my favorite parts of visiting my grandmother is looking through her photographs. She displays many in her home and keeps even more in albums. It seems she remembers every little story associated with those photographs, and she is a tremendous resource for our family's history. I don't remember all the stories she tells, and I certainly don't tell them like she does.
I am on a mission to build bridges to history so families can cross to the other side together, any time they choose. These stories are important, and they are almost gone.
Every life makes an impact.
I am teaching this to my son. He's attended many funerals and memorial services. We talk about death frankly in ways he can process. It is my hope that he will see death as a part of life rather as something terrifying that is to be avoided at all costs. At four-years-old, he is death positive.
This summer he came running inside the house shouting that he had found a bird that needed help. I could see he had a bird cupped in his hands and together we gently hustled back outside to investigate - I surely didn't want a bird who was ill or injured to attempt to take flight in a house with animals who would have seen that as the best day ever.
We sat on the front step and he slowly opened his hands to reveal a sparrow.
"This bird needs help, Mom. What can we do?" he asked.
Oh, my sweet boy.
"This bird is dead; her body stopped working. We can't help her get better. We can say goodbye to her and thank her for the life she brought to our forest." I put my arm around him and held him tightly to me as I spoke in a whispered hush.
We arranged a small, quiet service for this lady bird. The Boy helped me to find leaves in which to wrap her tiny body.
We held her and thanked her for what she brought to our forest. We told her that while we didn't know her, we appreciated her song. We thanked her for being a part of our world.
We buried her. She has a place under a large maple tree. The Boy dug the hole himself with his boy-sized shovel. He filled the hole above her. He did it because he wanted to.
This is how we can begin to change the culture regarding death. This was a ceremony for us. It was a moment of reverence and reflection. Our focus was on caring for the body of this bird and acknowledging the beauty of her spirit.
Children can do this. While I appreciate that at four years of life experience and brain development, the permanence of death is something beyond The Boy's reach, I also know that being honest with him from the beginning feels right to me and honors him. This bird didn't "go to sleep."
For those of you who are curious, we also talked about why it's important not to pick up dead or injured animals and did a lot of washing of hands.
It's so hard to know what to say or do when you care for someone who is living through a difficult circumstance. It doesn't matter if it's divorce, illness, family stress, death, or something else . . . sometimes it just flat out sucks.
As Emily McDowell and Kelsey Crowe, Ph.D., state, "there is no good card for this."
Maybe you are familiar with Emily McDowell's Empathy Cards, which she designed "for the relationships we really have." This book is more of the same - sound guidance from two women who have lived through those sucky times. Reading this book is like sitting down with a trusted friend and getting the real scoop. It's relatable, candid, and as breezy as writing on this topic can possibly be.
Emily and Kelsey write about the three touchstones of showing up: kindness, listening, and small gestures. They share from their own experiences as well as from those who participated in the research to bring this book together. It's heartfelt stuff. It's really accessible. It's not at all intimidating, thanks to the humor and credibility these great ladies bring to their writing.
One of my favorite parts was the guide on page 95 called "What Kind of Nonlistener Are you?" The authors identified five types of nonlisteners and courageously shared their own tendencies.
Honestly, there are so many phenomenal quotes, tips, and passages in this book I feel I'll take in and appreciate something new every time I read it. It's that good.
In short, I think you'll love it and put a lot of miles on it. Please read it before you need it, because trying to figure out how to support your friend who is hurting at the moment she needs help is hard for both of you.
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I borrowed www.angelovolandes.com/the-conversation/The Conversation: A Revolutionary Plan for End-of-Life Care by Angelo Volandes, M. D. from the library. It's now sitting in my Amazon shopping cart, just waiting to show up on my doorstep. It's that good.
The Conversation refers to a discussion about desires for end-of-life care. It's based on four areas.
This isn't an easy discussion for most people and the author offered several tips for starting The Conversation. He also included four additional questions for those who are already ill.
We all need to think about these questions, and the sooner the better. We need to share our wishes with our family. We need to talk with our medical practitioners. We need complete the paperwork to support our wishes and decisions, which may include advance directives, living wills, and identifying health care proxies.
Dr. Volandes illustrated the importance of The Conversation with stories of his experiences as a physician. He shared stories of patients and their families who wanted every life-prolonging intervention available as well as those who opted for comfort care. These real-life examples were vivid and relatable.
One of Dr. Volandes' achievements was the production of a video to help patients and their families make decisions about end-of-life care. This is a topic that is uncomfortable for many people, including health care professionals. The video contains information about the available options and facts related to each. For example, the video explains that fewer than 10% of patients with advanced cancer who receive CPR in the hospital survive and eventually leave the hospital. Fewer than 10%. Dr. Volandes found that so many people requested full code / advanced CPR because they believed their lives would be relatively enjoyable afterwards, even while hospitalized. They didn't know they'd likely be on ventilators with several broken ribs and a steady stream of pain medication that rendered them unable to interact with their families.
Whatever your current state of health, please consider starting The Conversation with your family. Dr. Volandes wrote about a couple who had known each other for 50 years, yet the type of care Dr. Volandes believed the patient wanted, based on his conversation with him, was very different than the type of care the patient's wife advocated. She said, "We never really spoke about this." Take the time to talk about it now.
How do you want to live?
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The room was dark when I walked by. Nurses were bustling in and out, and although it was a quiet scene it was chaotic. I made my way to the end of the hall to take solace in the view of the park while I waited. I was there to photograph the last moment's of a newborn's life.
The floor-to-ceiling windows gifted an expansive look at the old growth trees in one of the city's oldest parks. I could see children playing at the playground. Adults walked with their dogs. Several people in scrubs were walking quickly along the trails to catch a quick bit of exercise and fresh air before returning to the hospital.
Behind me the quiet chaos continued. A nurse approached me to let me know they were taking care of a few more things and she'd come for me when the family was ready.
This newborn boy, who arrived in the world the day before, was releasing the fragile grip he had on life. The chaos in his room was primarily for his mother, who was recovering from his C-section and overcome by the physical, mental, and emotional anguish of this reality. The nurses were doing everything they could to take care of her so she could be cognizant and comfortable during her son's final moments.
While all of this was happening, I stared out the window. I felt very small. Here I was, standing alone in the hallway listening to hurried footsteps that carried bodies and brains that saved lives. I was surrounded by people who every day change lives with the care they provide. They were working so hard to make this last day the best day they could.
All I had was cameras.
I couldn't save their son and yet they asked to see me. I couldn't relieve her pain, and yet she wanted me to come.
It was the first time I felt so insignificant as a photographer and a person. I felt like an intruder.
The nurse returned for me, shared a few words about baby's condition, and asked if I needed anything. The family was ready.
Before I knew it I was standing in that very dark room. The chaos had ended. Dad held his son and Mom sat next to him in her wheelchair. A family member stood against the wall opposite Mom and Dad. They asked the nurses to leave so they could be alone with their son. Alone with their son and a photographer they had never met.
Thank goodness for training and habit. I introduced myself and asked my usual questions of "what do you most want to see?" and "what do you not want to see?" without thinking about it. From different angles and distances I documented this precious boy's hands and fingers, feet and toes, hair, eyes, and everything else that wasn't obscured by monitors or other equipment. Dad held his hand. Mom stroked his foot.
I returned to the window to center myself when I left the room. I couldn't save their son and that was crushing. How wonderful it would be to tell someone that I had been able to perform some life-saving feat. What I could do was save a piece of him.
With photographs I could give these parents a small piece of forever. I could show them everything in the moments I was with them - the moments that were both glacial in pace and passing by in a blink.
With photographs, these parents can save their son. They can save this part of him. They can keep their memories of him and the time they had together strong. If there is only one way he can be with them as they move through the rest of their lives, I am moved to tears to be a part of that. I can give them this gift.
It's not life. It is a piece of forever. I hope that helps.
I see a lot of incredible moments of the human experience while being with families in love and grief. From each family I learn, and those lessons and points to ponder are what I wish to share with you here.