I have told you before that as a child I worked at a local flea market in Sapulpa, Oklahoma. It was hard, dirty work, and it made me despise at a very young age any passing fad or craze. You see, every couple years after a fad died the over-abundance of certain products would crowd our stall and be almost impossible to sell. I, to this day, cannot stand termite shoes, Rubik’s cubes or feather earrings. But I truly disliked the many mugs, wall hangings, and decorative pillows emblazoned with the words to “Footprints in the Sand.” As a child, I found distasteful the hokey 1970's imagery of the beach sand and the disappearing footprints next to text written in mass-produced faux calligraphy. I am sure you are familiar with the tale. In it a man walks with God along a beach as the memories of his life pass him by. He notices in his darkest times there is only one set of footprints. He questions God, “Why did you leave me at my saddest moments?” God responds that when there was only one set of footprints that was when God carried him.
As a child, I really did not like “Footprints in the Sand.” In many of the pictures, it seemed like Jesus was carrying the dead- their arms limp and dangling. I did not want to look at this, and I did not want to be carried. Perhaps, as I was young, that memory of being carried, that loss of control or will was too fresh, so I could not accept this image. When I was a child, I spoke as a child; I understood as a child, I thought as a child…
Now, I am often asked "How do you do all that you do? How do you have the energy to balance teaching art, advocacy, blogging, giving speeches, and painting?" Well, I do not do walk alone. I pray, and God gives me the energy to sustain this life.
I remember one point when Fred was in the hospital, when all things within this life seemed so very dark. I remember praying for the peace of God, that it fill me and uplift me. And it did. I remember the moment. I was walking through the hospital cafeteria praying silently when I was filled with the love and light of God. My face was lit with an inner peace and even the hospital workers remarked upon my visage. The footprints artist had gotten it all wrong: when God carries you, you float.
Time has passed, and I no longer burn with this inner fire. I smolder. The journey is long, and I know the spirit is still within. I listen carefully and watch for “God moments.” My sister Esther and I call those moments of divine direction that happen with our lives “God moments.” I listen, I am open to direction, and I know the freedom of putting one’s life in God’s hands. So when I was invited to speak at 2010 CMS QualityNet Conference on December 2 in Baltimore, I said yes.
And that is how I met Chuck Denham.
Do you know Dr. Charles Denham? He is an amazing man. He worked with many cancer patients over the years as he has a background in oncology. He is founder and Chairman of TMIT (Texas Medical Institute of Technology), a non profit driving adoption of patient safety solutions and in this capacity he teamed up with CareFusion and AORN (Association of periOperative Registered Nurses) to produce “Chasing Zero” for the Discovery Channel.
“Chasing Zero” first aired in April of 2010. It stars Dennis Quaid in his new real-life role as a patient’s rights advocate. It is a very strong documentary about patient safety, and it made quite a splash in the world healthcare and patient advocacy. I had seen parts of it before meeting Chuck. I knew about the reason why Dennis Quaid was acting as a spokesman for patient safety as well. I had seen a repeat of his March 2009 appearance on Oprah while Fred was sick in the hospital. I heard him speak about the fateful overdose of his young twins due to a case of look-a-like bottles of blood thinner. The twins were mistakenly given a dose from a 10,000-unit bottle instead of a ten-unit bottle… and it happened twice. The twins did live, but this acted as a wake up call for Dennis, and he decided to help so others would not have to suffer as his family did. Dennis Quaid’s inclusion helped a strong documentary become a must-watch call to action.
Chuck asked me how I had gotten invited to CMS. I couldn’t tell him at that moment as I had forgotten the complete course of events, but now I see clearly.
I spoke before CMS, because on Sunday, May 3, 2009 I worked at Barstons Child’s Play- the toy store. I only worked at the toy store for three days when Fred was sick, and one of those days was May 3. Fifteen minutes before the store closed, Christine Kraft, a long time customer, came in, and I told her about Fred and kidney cancer, and she told me about Twitter, blogging, Health 2.0,and ePatient Dave. After Fred entered hospice, Christine put together a small Health 2.0 get together on May 27, 2009. That day I met Ted Eytan, MD. I would later find out he worked at Clinovations in DC and he would introduce me to Greg Fuller who would pitch patient participation at CMS on November 8. Greg would give them my name.
So on December 2, I spoke before CMS about Fred, patients’ rights, Stephen King, social media, special education, and Cub Scouts. I would tell them that putting the “H” in HIT requires remembering… Holliday, Fred; not the patient in room 6218. After I finished, a slow standing ovation spread through the room. Then Chuck Denham can over to speak with me about how he would like to spread this message far and wide. We spoke briefly, and when he learned we would both be at IHI on December 5, he asked me to film a small piece we could send to clinicians about why it is so very important that patients and caregivers have access to the electronic medical record.
Then Chuck did something very few people have ever done. He asked me how I was feeling, and he really listened to my answer.
I told him that when I paint or speak I go into that gray, sad place, and I walk in darkness for a while, but I come back renewed and refreshed. Chuck told me he has worked with many advocates, and he is concerned. He is concerned about our continual revisiting our deepest sadness, just so we can tell our tale to others. He worries about us and wants help us. So when we were filming on December 5, he asked what is it that helps me and inspires me and what supports me in my sorrow? I looked him in the eye, and I said God does.
So Dr. Charles Denham did something that no other doctor has ever done with me. In all the hospitals we stayed in, no doctor ever reached out and prayed with me.
In the many hospitals Fred stayed in, we were asked during admitting if we would like “a spiritual consultation.” This was asked with all the presence and compassion as the familiar phrase, “Do you want fries with that?” Even at hospice, when the bereavement coordinator spoke to me, she focused on my emotional support system. I told her that God sustains me. She rephrased it to me, “You mean that your belief system helps uphold you.” “No,” I said. “My belief system does not hold uphold me. God enters my soul and gives me peace.”
So, I sat there with Chuck and we prayed, and once again, I felt that wonderful peace of God.