For the past year, CHAP has been working with the Adolescent & Young Adult (AYA) oncology program at Knight Cancer Institute. The AYA patients are between the ages of 15 - 39.
I find that there are no perfect words or ways to bring comfort to folks when they are experiencing pain and struggle. The best option for me is to provide my patients with an ear for genuine listening. Sometimes just a few words are expressed; sometimes it's simply facial expressions. And sometimes that is all that needs to happen to make a connection.
My co-art teacher had taken several 'room service' bead requests at one of our partner hospitals and I was making some room deliveries. My co-art teacher told me that I would really like the energy of the woman in room XYZ. When I opened the door, this wonderful woman was sitting in a chair next to her bed. Her name is “Tess” and she greeted me with a warm, crooked smile.
Tess shared with me that none of her family lived nearby the hospital and she was not very happy to be there as you can imagine. She had previously found out that she had cancer, but was treated and was in remission. More recently, Tess started feeling terrible and grumpy again. Her fears were made into reality when the doctors told her that her cancer was back, and this time she needed a bone marrow transplant. While Tess was sharing her story with me, she was altering her house slippers. She said everything [in her life] was just uncomfortable right now; her house slippers, her pants were too tight, just everything.
Tess and I spent some time conversing and then I showed her the colorful plate of beads that I had to offer and her eyes lit up. She was happy to have a distraction. I told her that we would be back to check on her and that she could call for us anytime she needed more supplies. She looked up at me and thanked me. As I walked toward the door, she sweetly said, “I am hopeful that this hospital will get the cancer out”. I looked at her and said, “me too”.
We (Children's Healing Art Project) have recently expanded our programs to serve the AYA population. AYA is an acronym for ‘Adolescent and Young Adult’. This program started on August 29, 2012. The program offers one-on-one art for patients with assorted cancer diagnoses.
I will share with you one tale from AYA. On November 1st I was asked by the AYA Program Coordinator to check on a particular patient. I will refer to him as Som. I walked into his room. Som was propped up in bed and had a tremendous amount of sutures in his scalp. Most notably, he was missing part of his skull. This was obvious because his scalp was sunken in this area. The divet in his head must have been 5” in diameter. After a brief moment of taking all that in, I introduced myself and asked the gentleman if he would like to make some art today. It was extremely hard for Som to speak. One of our initial exchanges was very belabored. It took him quite a few tries to get the works out. In the end, he was asking me to turn the light off in his bathroom. Ah! We had communicated. I turned the light off for him. As we spoke, he would at times get words out successfully and other times the words were indecipherable. I sat with him and said, “Take your time. Go easy on yourself. You have been through a lot. Be gentle with yourself.” At one moment of intense frustration, he leaned his head back on his pillow and if to say, “It’s too hard to talk!” He started to cry a little bit & I gave him a couple tissues. Som did accept my invitation to do some jewelry making. His hands were too shaky to thread the beads onto the string. I said, “Don’t worry. I can do it for you.” So I would add a few beads and hold it up for him. He would review my work and give me the green light to continue. Som’s language has so clearly been impacted by whatever cancer has been affecting his brain. At one point, Som’s nurse came into the room. The nurse was very upbeat & friendly. He asked me if I was making a good luck charm for Som. I said, “That’s a neat way to think about it. I suppose the answer is yes!” I finished the necklace of amber, black & white glass beads. I placed it around Som’s neck. I said here is your good luck charm. He started to cry again. I took his hand. And he squeezed my hand tightly. I said, “I feel your strength. “ He was really holding onto my hand in a very meaningful way. I said. “I am glad we got to work together. I am glad I got to sit with you for awhile.” I exited the room and my head was reeling. It had been a very profound interaction. I think Som was sincerely grateful to have someone sit by his side and witness what he is going through.
The following Thursday, when I went to do AYA Bedside, Som was there again. He was in a different room this time. A plate must have been placed back in his skull. It was no longer sunken. Guess what was around his neck one week later? The good luck charm we had made together. His spirits were better. It was still frustrating for him to talk, but we managed a version of a conversation. We made another necklace. When finished, I asked if he wanted me to take off the 1st necklace and put this new one on him. He said no. He wanted both on at the same time. I reached around his head and put the second necklace on him. He told me that he was expecting to get discharged either that night or the next day. He didn’t cry this time. He just said, “I’m going to miss you.”
I’d like to tell you tell you about a very powerful Wednesday we recently had at a couple of our partner hospitals:
To start the day there were no kiddo’s at our first location. I invited twin sisters (probably in their 60's) playing Angry Birds on their smart phones to come join in on a little art making. In the meantime, two other women came in, one of them a patient in a wheelchair the other her sister. No one in the room could escape the negativity from the argument they were having. I offered beading to them out of sympathy and to lighten the mood. One jumped at the idea...the other complaining the entire time, but still taking the beads. Finally, one of the twins joins them, also trying to diffuse the situation. Her sister soon joins in, just as pleasant and uplifting as her twin...they make identical necklaces and felt birds and we parted having exchanged information. By the end of our session the argument between the second pair of sisters had been completely forgotten about by the pleasant conversation and they were able to make some wonderful jewelry...eventually some kiddo’s joined in and what started as a rough morning became a colorful and fun day.
Upon arrival to our second location that day, there was a note taped to the art cabinet door from a nurse. It said
"To the Art and Craft Lady” -The family of a patient who passed away in September wanted to "thank you so much" for all you did to help his children while he was in here. I remember him as the kindest father of a large family. He and his wife had adopted some foster kids with special needs, and had some of their own. While he was in isolation at the hospital, we would feed projects in with his four children, wife and aunt. They had been thrilled and grateful to have something to do while at the hospital, and they were finally able to go home with the good news that he was in remission. The nurse told me he had passed away very suddenly due to unexpected complications.
The afternoon continues and we have a good crowd at the table, beading and painting. I passed a woman in the hall in obvious distress and told her she was welcome to come in and join us. She was crying and said they had just had gotten bad news about her husband. Without thinking, I said that sometimes that was the best time to come in. She thanked me and walked off and I felt ridiculous for having even suggesting that I could possible know what is the best thing at a time like that. The Ugly Cancer.
Five minutes later, her entire clan came in one by one: the grown children, mother, his niece and her boyfriend, sisters and the granddaughter. All of them beaded. Some of them painted quilt squares with the patient's name for a fabric art quilt to hang in the room where we have the art making. The mother of the patient was silently sobbing as she beaded her bracelet in the corner...but she recovered and came over to sit with her family as they made art. There was laughter and good teasing, and there was joy in a sorrowful place. This is the center of what we are all about!
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