The tale of how we suffer

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“For, while the tale of how we suffer, and how we are delighted, and how we may triumph is never new, it always must be heard. There isn’t any other tale to tell, it’s the only light we’ve got in all this darkness”

– James Baldwin,  Sonny’s Blues


Sometimes, Vanessa looks at Billy as he tries to help her with something, and says “I hate you, and get the f*c+ away from me!” Some other times, she doesn’t know who he is, this “man ALWAYS here”.



Sometimes, asleep feels like the only time Vanessa is at peace.


Birth and death are precise moments. This *dying*, as a verb, straddles between the life and the death on unsteady wheels.


Reuben’s name means “son”; he stays close to his momma. When she pushes him away in frustration or pain, he patiently waits nearby, and always comes back.



Sometimes, literal things to hold on to are easier to find than the more figurative kind.


Even the refrigerator door bears witness to this grief, with so many reminders of what should have been, what was, what is. Photographs of lives traveling both directions – coming, and going.



Morning, noon and night. And, repeat.




Sometimes, Vanessa is not the only one who can’t catch her breath.


We pin – to keep track, to show that a shower is not optional today, to allow Vanessa to still feel accomplished in the visual way the world speaks to her.


She writes her “pain!!!” with 3 exclamation points. Each one is a knife to my heart: stab, stab, stab. Sometimes, in the few minutes before her medicine kicks in, she begs us to kill her. After the medicine kicks in, she sleeps, and forgets.


Hers and His




Heart-bursting gratitude to still see this smile, sometimes.


Lifting Vanessa.




And again, we rest.


  1. linda herms says:

    I have so few words. I pray that somehow somewhere in this awful time you feel Gods arms around you. I cannot even imagine, please know you are in my thoughts and prayers every single day. Sadness beyond words.

  2. sylvia says:

    From the moment we met and heard Vanessa’s story at the Scar Project, she has had a special place in my thoughts and prayers. Peace to her and her family.

  3. kathy says:

    V and Billy I’m sending hugs and prayers. Peace and love to you and your family. Thank you for touching my life and reminding me to live sincerely.

  4. Jessica Livingston says:

    These photos remind me of the month we spent living with and caring for my father-in-law as he was dying from cancer–the pain, the pills, the sleeping, the withdrawing. Its heartbreaking and exhausting to be part of this process, and yet you’re doing more than surviving it. There is so much love and care evident here. I’m amazed by all of you. My prayers are with Vanessa and you as you suffer this journey.

  5. Donna Grosser says:

    I’m Jude’s wife, your mom’s cousin, and also a breast cancer survivor. Your blog and story of Vanessa and your family is so touching and meaningful. You give meaning to this pain and to Vanessa’s journey. Keep on, know that even to relative strangers, we pray for you all and keep you in our hearts. Tell your mom we are thinking of her always too.

  6. Betty Kirk says:

    Billy, although I haven’t seen you in a long time, my heart and prayers are with you and your family. Unfortunately, I understand all too well what challenges you and your family have faced and will face in the future.

    You and your family have shown your inner strength, patience and love for each other with your actions.


  7. Pam says:

    Jessica – your photo journal is such a poetic depiction of Vanessa’s journey….. I will always remember Vanessa’s beauty from the first time I met her during the planning of The Scar Project. Her strength and zest then, inspired me beyond words….. She will always live in my heart as the Vanessa I met in the fall of 2011.

    Billy – you were her rock then, and continue to be. You will be blessed for your continued love and support. You are truly a man all should aspire to be…..

    Thinking of all of you…..

  8. Mary Pat says:

    Your dad stopped in my office on Monday. I, of course, asked about Vanessa and he told me what I did not want to hear. I told him that I was truly sorry about all that is going on. After seeing the pictures in the entry, it seems more like a hospital than a home. I know Vanessa needs all the equipment, but it does not seem fair. And I would assume that the family would agree with me. I pray for Vanessa and Billy and for the rest of the family. I will continue to hope for the best.

  9. Nicole says:

    Thank you for sharing your family’s struggle and journey. It is too familiar a story for too many people. You are lucky that you got to tell and show her the most important thing. That you loved and will continue to love her.

    My thoughts are with you.

  10. Kimberly Gaines says:

    I am at a loss for words. I had the honor of meeting Vanessa & Billy last year at the Karen Wellington luncheon. My younger sister was there also, and she is now listed as being terminal. Part of me wants to thank you for sharing this journey that none of us want to take..because of it, and as much as I know I don’t ever want to have to do it, you have prepared me in some way for what I know is coming. I know how hard it is when one second they beg you to help it end..and they are so mean, violent..and the next…it seems although for a fleeting moment…they are back. Thank you for sharing this journey. You are helping more than you know. Blessings to you all.

  11. Anne Marie says:

    Heart wrenching. How beautiful is your love. You all are in my prayers.

    “True love hurts. It always must hurt. It has to be painful to love someone; painful to leave him, you would like to die for him. When people marry, they have to give up everything in order to love each other. A mother who gives life to a child suffers much. The word ‘love’ is misunderstood and misused so much.” – Blessed Teresa of Calcutta

  12. Nora Ami says:

    Jess, this photo essay is so powerful, moving, beautiful and true. Thank you for sharing the pain along with the inspiration; your talents are a gift.

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