It was very effective. I was scared. I love the way you use the movies of the era as commentary and counterpoint as well as showing us the the way the characters were surrounded by those stories. Tell me about the choice to show the clips in color even though the rest of the movie is black-and-white. It was partly to underline that for me, movies most certainly were an escape from what was happening and that the color itself was this immersive leap into a world so far away from Belfast, which I saw in shades of gray, where it rained a lot.
I saw so many westerns on television where even Monument Valley was not all dusky red or anything. It was shades of grey and black. Not like the color of the movies and in a way the live quality of the theater, like the piece of "A Christmas Carol" that we show. That's how it was exploding in my head. One ran to it because it was so different, it was so transporting, and it was so much of a relief from what we were seeing.
And it was also absolutely tied up in the family experience. That's when we went to see big films. I saw the James Bond film last weekend in 4DX with shaky seats, the smoke, and the water and everything.
And then I looked back at "Chitty Chitty Bang Bang" and of course, we were persuaded by those amazing visual effects and felt immersed in it. But really all that happened was that the audience leaned forward and somehow you were completely captivated by it.
And it was that. It was utter transportation from utter escape, utter relief, and release. It is a challenge to tell an adult story through the eyes of a child and give us both perspectives. We tried to keep things simple. He's a very smart boy. And he's kind, he's inquisitive. There was a moment while we were waiting for something. He was just standing by and he looked up at the barricades. Jamie said, "Imagine Jude, imagine if that was up at the bottom of your street now," and Jude sort of did a slow double take because he was in play land making the film.
And then when you could see a penny dropping Louis McCaskey, who plays his brother Will, came up to me and said, "Did you really live in a house like this, Ken? And he was amazed at how small it was. You could see that the two of them had a sort of burgeoning understanding of the reality of their own experiences. They both love sports and play and, and do everything that the characters in the film also do.
But you could see as the film went on this burden that this changing world had for them. And that they began to understand and imagine in their own lives how extraordinary it would be and maybe even a little sense of how fragile it remains. So there was something you could see right on their faces that was an understanding of, "Oh, we don't want to go back here.
Not to this bit. We like the playing, we like the fun, and we understand the Belfast of it all. We understand the large community, we understand all the humor, but this other side, we'd like not to have to understand that. I heard that Jude got very close to Dame Judi Dench and that she gave him some pointers about acting. Very much so. I was quite aware that during this phase of his illness Kenneth needed to control something and demanding I play so he could rest was the only control he had at that time.
Kenneth was readmitted two more times, but he chose to come alone. He explained that he was tired of everything and scared. Medically, he was having significant toxicities from the chemotherapy in addition to intractable pain, nausea, and vomiting.
Furthermore, despite six rounds of chemo, his tumors continued to grow and he was having a decline in performance status. While his family tried to be supportive, Kenneth seemed to need more. As I sat on his bed, holding his hand, he quietly shared that he was afraid— afraid he was not getting better, afraid that when he closed his eyes he would not wake-up, and afraid to plan for his future. He wanted to acknowledge the possibility that treatment would be unsuccessful, while they only wanted to focus on the positive.
The focus of the music therapy sessions during this time shifted. It was evident that Kenneth wanted me to listen to him as he talked about his fears, feelings, frustrations, and need for support outside of the hospital.
Kenneth then wanted me to play softer music to help him sleep. I was reluctant to continue this pattern, as I was not sure it was helpful to him and was concerned that emotionally he was experiencing more than he could handle or cope with at this time.
So, I decided to shift gears. He did not say a word, just looked off in the distance. I sat with him waiting for his directions. After what seemed an incredibly long silence, he began vigorously crying while I held his hand and eventually wiped his tears. It was then that Kenneth began sharing with me. His voice was filled with anger as he shared his HIV status with me. He said that family treated him as if he were contagious. He talked about feelings of helplessness, having to rely on others, regret, guilt, shame, anger, sadness—a full range of pent-up unexpressed emotions came forth.
He talked about death and how he hated the way he felt. He explained that dying empty meant that you gave everything you had inside of you to someone else, whether it is love, gifts, or talents. I asked him how he wanted to become empty, and he shared that he wanted to give his love, his heart, and his everything to someone else.
I suggested that he write songs, sing songs, give songs to others he cared about or possibly create his own songbook. What better way to make me empty. Two days before Christmas, four weeks since I had last worked with him, I was despondent to find that Kenneth had been readmitted to the oncology unit with a high fever and probable pneumonia. When I went in to say hello, I was quite upset to find him shivering in bed, writhed in pain and disoriented.
It was incredibly difficult to see him in so much pain, literally suffering. It took me a few moments and some deep breaths to gain my composure. I began improvising on my guitar with a slow and steady tempo. As I continued to play, his legs slowly began to release from a fetal position as his body began to relax and his breathing became deeper and steadier.
At one point, I thought he was sleeping and was surprised when he began talking: I am angry. Is that okay Joy…is it okay to be angry? Why did this happen? When I returned, I found him sitting upright, looking weak and fatigued. I was pleased to see his mother at his bedside attending to his needs. He was more lucid than when I had seen him last, and he asked me if I had been in to see him. I promised that I had as he again drifted off to sleep. I spoke with his mother briefly.
Two days later I worked with Kenneth again. He was lethargic but reported less pain. Before long he grabbed my hand and began to cry with his whole body as he tightly squeezed my hand. I had tears in my eyes as I simply allowed him to release the tears and the anguish that he was obviously going through.
It was increasingly difficult for me to go in to see Kenneth. His oncologist was going back and forth on a plan of care. It was apparent that he was not going to survive this illness and quite possible that this would be his last hospitalization.
Another round of chemo could be initiated and there was the possibility of palliative radiation to the head. It would take close to a week of tests and various consultations, including a palliative care consult, before a course of action was chosen. During this time I was unsure of what to do. The music was a great source of comfort to Kenneth, and it certainly helped him cope with the increase in pain and anxiety.
However, I was having an extremely difficult time seeing him suffer. His pain was not managed and every time I entered the room he was moaning. Each time, however, the music helped calm him. He used the music session to express and access his feelings. It was only after this expression of tears that he allowed the music to relax him. Her anger and frustration during that week was directed at the nursing staff.
The next day I went in to check on Kenneth. Again, he was curled up in a fetal position yet receptive to music. Kenneth seemed to have found the greatest comfort in releasing his emotions through the music; it allowed him to rest. Yet, I was receiving this request from his mother that I not provide music to her son. Before long, he was in a deep sleep as was his mom. It was four days later when I saw Kenneth again.
He was alone in his room, resting and more lucid. He spoke in two to three word sentences before his voice drifted off. He was responding to the chemo and radiation and was slowly beginning to eat again. Kenneth was discharged from the hospital five-days later with plans to continue chemotherapy as an outpatient.
Two and a half weeks later Kenneth was readmitted. When I entered his room to say hi, I was quite shocked by what I saw. Kenneth had lost close to 23 lbs.
He looked emaciated, his skin just hanging from his bones. He was not eating secondary to side effects from both the radiation and the chemotherapy. Kenneth was sleeping most of the time with periods of alertness characterized by high levels of anxiety with resulting increases in pain.
His mother continued to struggle, angry if Kenneth was anxious or in pain, and angry if he was sleeping secondary to medication for the anxiety and pain. I had two sessions with him during his first three days of readmission. Both times he appeared restless, asked for music, and used the music to fall asleep. During the first session, he was more alert, and I attempted to engage him in songwriting; however, he was not interested.
During the second session, he was not lucid enough. I admit I was quite frustrated about what I felt was inhumane, prolonged suffering. I wanted him to allow the music, trust the music, to process so that the underlying issues contributing to the anxiety could be dealt with. I also recognized at that moment that this was about me and not about Kenneth. I discussed the case with my supervisor, who was unaware of the complexities of the case.
I only wanted what was best for the patient. However, a short time later I knew he was right, and I came to my senses—yes, the family system. While he was comfortable with displaying his anger towards her before, he was now scared more than ever and needed his mom.
Kenneth was extremely lethargic when I entered the room, going in and out of sleep. I suggested that we allow his mother to choose some songs, and Kenneth agreed. After the song ended she softly broke into song, singing a few verses of various gospel songs from her childhood with a promise from me that I would try to find the lyrics for her.
I had to hold back tears as his mother began softly crying as the words. Kenneth continued to decline, and his body was fighting more and more infections. When I entered his room two days later, his mom, aunt, and three nieces greeted me. Again, Kenneth was lethargic, slow to respond to any stimuli, but seemed to be comforted by the presence of his nieces. Next, the girls helped me sing to Kenneth. They and their aunt choose a variety of songs, ending with religious songs.
It was a wonderful session. At the end of the session, I reminded his mother of one of the first sessions I had with them when she spontaneously broke into song. The session ended with a melody of spirituals, clapping, singing, smiling, and memories.
This would be my last session with Kenneth. The next day a palliative consult was placed and mother became irate. Furthermore, staff members were concerned that she was not allowing him to receive a proper dosage of pain medication. My last interaction with her would be as an intermediary with staff, as I was the last staff member she was willing to talk to. Jack: Jonathan. Who is this? Kenneth: Mr. Donaghy, this was delivered to — son of a married couple, Bucky Bright! Jack: You know who this is?
Jack: Most people. Tracy and Kenneth discuss the new page uniform. You got wife eyes. Kenneth: Sure, I was legally dead for five minutes…. But I think I brought something back with me. Kenneth shivers and exhales a cloud of smoke. Liz and Pete are trying to figure out how old Tracy is. Tracy: Of course. Why would I lie about my age? Pete: Right. Liz: Yeah, everybody our age knows that song, right?
I mean, even the ones who never saw me. Liz and Pete together Like the way that I rhyme at a show. Kenneth sings : It takes two to make a thing go right. It takes two to make it out of sight. Tracy: Not familiar.
But what about this song? Liz: How old are you? Tracy: Tracy: Hey, remember this song? Kenneth sings : Astride his fair steed to spy. Kenneth to Jenna : Vampyr! An old pronunciation of vampire.
Jack: Et tu, Kenneth? Kenneth in Latin : You speak Latin? Then you understand. The safety of the people is the highest law. Tracy: What? Where do you see yourself in 10 years? Kenneth: Well, you know how much I love television, sir.
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