CHAPTER 3
SEARCHING FOR MEANING
One month went by and Sharon still showed no signs of improvement. One day while walking our dog, Kaci, Elyse, a friend of mine, approached me with the idea of seeking the help of a friend of hers who was a spiritual advisor. Elyse knew how anxious and confused I was regarding Sharon. I took her advice and made an appointment to see her friend, Deborah.
Ron and I were anxious not knowing what to expect when we rang the doorbell. Deborah answered the door. She had blonde hair, and I guessed was about forty years of age. She invited us into her home that was adorned with scenes of nature and religious symbols on the walls. She had an awareness of something far greater than herself. Her home was quiet and comfortable. She was a soft-spoken woman, and I felt very much at ease with her. She offered us some tea and then told us she would be going into a deep meditative state to seek the advice of a higher spiritual power. We could ask our questions, and she would relay to us what was being communicated to her. Our first question was why this happened and was there anything we could have done to prevent Sharon’s accident. She told us this was part of a Divine Plan. There wasn’t anything we could have done to prevent it, and it was part of our own spiritual growth. She went on to tell us that although we could not believe it now “this is a great spiritual gift that Sharon is giving you, but it will be the most difficult time in your life.” She went on to say, “This experience does have pain, suffering, and sorrow which was something you needed to feel and get in touch with in order to move through it for a greater purpose and ultimately a gift to you.” She also said Sharon would like “flower essences” particularly “Rose of Sharon” and “Umak.” This ended our first session with Deborah.
We met with Deborah weekly and each time she reassured us that this was not something we could have prevented, but part of a Divine Plan. On one occasion I felt extreme heat on the side of my neck and mentioned it to her, and she said Sharon was in the room with us. This was one of many experiences that were to happen assuring me of Sharon’s presence beside me.
Michelle, the shamanic practitioner, contacted me. She told me she was going to a Lakota Sundance ceremony in Rosebud, South Dakota. A remembrance tree is part of the ceremony, and she wanted to enlist the help of others at the ceremony and place Sharon’s name on the tree for prayers. During the Sundance ceremony, she gave what is called a flesh offering for Sharon’s recovery. A flesh offering is a symbolic giving of oneself back to Creator with a prayer. She called us when she returned and told us about a Lakota Medicine Man, Chief Phil Crazy Bull, whom she knew and who had asked her at the ceremony why she was giving the flesh offering. She told him of Sharon’s situation, and he offered to see her. We immediately said yes and waited for her to get back to us with a date.
Every ten days, Ron and I returned to Phoenix. Sharon was still unresponsive. She would stare straight ahead. It was obvious her body was still there but she was no longer the daughter we remembered with the outgoing personality who always remembered everyone’s birthday and was constantly active and busy. What lay in the hospital bed before us was the body of someone we loved deeply, and it felt like a part of ourselves was dying with her. We stayed for three days sitting by her bedside each day, still praying for a miracle. Our next trip was on September 3. Sharon seemed to respond to pain for the first time, and her eyes would turn toward someone new entering the room. Every little movement we looked upon as a positive sign. Each time we had to leave, I felt like I was being torn apart. The experience was beginning to take a toll on me physically. I was exhausted.
On September 22, 1999, Chief Phil Crazy Bull, a full-blood member of the Sicangu/Lakota Nation of Rosebud, South Dakota, Ancestral Chief and Medicine Man, came to Phoenix to perform a Native American Healing Ceremony for Sharon. Ron and I, Chris and his fiancée, Heidi, along with Michelle and a friend of Phil’s entered Sharon’s room. At Phil’s request the room was completely dark, sage was burning, and prayer ties were placed around Sharon’s bed. The prayer ties were made of different colors of cloth (yellow, black, white, and red) each signifying the directions of the North (red), South (white), East (yellow), and West (black). Tobacco was placed in each one, and a prayer said over each one. Each cloth was then tied with red string. Tobacco is a traditional Native American offering that carries your prayers to spirit. Yellow honors the direction of the East, provides clarity and honors the golden eagle. Black honors the West, provides healing and honors the spotted eagle. White honors the direction of the South and provides protection and honors the brown eagle. Red honors the direction of the North and provides knowledge and awareness that we are connected to all things and honors the bald eagle. There were also four eagle feathers placed around Sharon’s bed. A bone eagle whistle was used by Phil. In his Lakota language, Phil began the ceremony. I remember looking at the eagle feathers during the ceremony, and they were moving. This was my first insight into the spiritual power of the Native American traditions. After the ceremony, Phil felt Sharon would hopefully return in four days. I stayed vigilant over the next four days hoping for a miracle. On the fourth day when the ophthalmologist came in, he flashed a light into Sharon’s eyes, first the right and then the left. He looked up at me and said, “I think she is responding to the light.” She tried to lift her head off the pillow and open her mouth. I was excited, and my heart was beating fast. Finally, I thought something positive was happening. Then Sharon started to grimace. You could tell this was an extremely painful experience for her. My emotions were conflicted. A part of me was anxious to have her return to us, but another part of me didn’t want her to return if she was going to be in this much pain. I was torn between wanting her to return and shuddering to think of her returning to a life of pain and suffering. The four days came and went, and I saw no more responses from Sharon.
Our next trip to Phoenix was during the first part of October. Ron and I appeared in Phoenix court to request formal guardianship for Sharon who was now twenty-seven years old. We explained to the judge Sharon’s situation and that we would like guardianship and the right to all Sharon’s records while at the jail in Phoenix. The judge was very sympathetic to our situation and signed the order. He hoped we would find what we needed to clarify the situation. We left the courtroom and immediately called the private investigator, Don, we had hired and told him that the judge had signed the order giving us access to all records. He found this quite unusual and not the usual protocol for the courts. He was thankful since he had not been able to find out much of anything since the jail kept their records sealed. Don phoned us the next day and said, after a lengthy discussion with the Sheriff’s Department personnel and only because the judge had written the order, they had no choice but to relinquish all records. We met the investigator at the Sheriff’s office the next day with the court order and were given all the records including an actual film of the accident. There were twenty-four-hour video cameras in the area of the accident. Ron and I watched in horror the tape of Sharon’s accident. There was no sound on the tape. Sharon was in the jail-holding area, a room about six feet by eight feet sitting on a bench. The attendant opened the door and Sharon walked out. We were told she was going to see a judge. Sharon started to fall forward and then backward hitting her head on the cement. Blood was flowing from the back of her head. Her body started to jerk violently. Attendants gathered around her, and you couldn’t tell on the film what was happening because so many people were crowded around her. Minutes went by before an attendant went for the phone and called the paramedics. I started to cry hysterically at what I was seeing. I was an emotional wreck.
Don viewed the tape the next day and went over the records. He felt we had a strong case against the County Jail and told us the attorney was willing to take the case.
On October 4, the internist told us Sharon had contracted VRE, Vancomycin Resistant Entercoccus, a bacterial infection for which there was no antibiotic presently available. Within twenty-four hours she was put into an isolation area in the Critical Care Unit. Every person allowed in the area had to be in a sterile gown, mask, and gloves. It reminded me of something out of a science-fiction movie. Sharon’s internist immediately contacted a pharmaceutical company and learned they had just released an antibiotic that could treat this infection. Sharon would be the first person to be given this medication in Arizona. After ten days, the medication worked, and the infection was under control. Sharon was then transferred back to the sixth floor.
The neurosurgeon met with us on October 16. He told us Sharon was not responding as they had expected, and after doing another CAT scan, increased intracranial pressure was found. The shunt that had been placed at the time of her initial surgery was infected. The neurosurgeon suggested redoing the shunt to expose it, and then they would be able to give antibiotics directly into the brain. The surgery was scheduled for October 19. Again, we waited and prayed that she would survive yet another surgery. Ron and I entered Sharon’s room after the surgery to find one side of her head completely bald with tubes going into the side of her head delivering the antibiotic directly to her brain. She had survived the surgery, but I thought, would this be what she really wanted?
Three months had now gone by, and we had a meeting with the neurosurgeon. He looked grim as he entered the room, and I thought he must be tired from the surgery he had done that morning. We were seated in a conference room. On the table in front of him were all of Sharon’s X-rays and reports. He told us Sharon’s prognosis was not good. He showed us the most recent CAT scan. He pointed to the enlarged ventricles. He said it was obvious at this point that Sharon had gone without oxygen for a prolonged period of time. He had expected more positive results by this time, but it was not happening. He told us he was very sorry, and that this was truly a tragic story. He shared with us that if Sharon had fallen on a carpeted floor rather than cement it would have made a big difference in the outcome. He got up from the table very despondent, excused himself, and left the room to attend to another patient. I didn’t want to believe what I was hearing. All my hope and optimism quickly turned to depression. A part of me wanted to scream that this could not be happening, but the expression on the doctor’s face told me otherwise. The grim reality of the situation left me without hope as we left the room in silence.
Over the course of the next several weeks, Sharon’s infections cleared, but she was still unresponsive and in a coma. The doctors felt she was stable enough to return to Portland. Carolyn, the social worker at the hospital, made the arrangements. On November 4, 1999, I took Ron to the airport in Portland, and he boarded a plane to Phoenix so he could accompany Sharon back on a private plane to Portland. There was a registered nurse and paramedic along with Sharon and Ron on the flight. When they arrived in Portland, an ambulance was waiting to take Sharon to the hospital where arrangements had been made with a new neurosurgeon who would oversee her care.
Sharon spent three weeks in the Neurological Unit of the hospital. Each day I would go and spend time with Sharon, talking to the nursing staff and therapists about her care and hoping for some words of encouragement. Sharon was still unresponsive, except to pain when she would grimace and a loud noise would make her jump, which I was told was just a physical response and not an indication she was coming out of her coma. Her days consisted of staring blankly straight ahead in whatever direction her body was placed.
I was determined to do everything I could to bring Sharon out of her coma, and so Ron and I learned the healing therapy of Reiki. We took Reiki classes hoping that this therapy might help her. Reiki is a form of energy healing. The word Reiki means Universal Life-Force Energy. Reiki is the channeling of energy to someone for the purpose of healing. A Reiki practitioner will place their hands on the person requesting the healing and be a channel for the energy to pass through to a person for their greatest good. Both Ron and I took the basic and advanced training in Reiki, and during one of the classes, the teacher had asked if we would do Reiki on some individuals who had asked for this particular method of healing. We all agreed, and a group of three of us were assigned one individual. The lady we were assigned laid on a massage table, and we put our hands in the instructed positions and closed our eyes and silently asked for guidance in helping her to heal. My hands became very warm, and when I closed my eyes, I could see what appeared to be a bunch of cauliflower. Not knowing what this meant I continued to pray and ask that this person experience the healing she needed. After the session we told the person what we had seen or experienced, and when I mentioned the cauliflower the lady said she had breast cancer and her doctor had described the growth as looking like cauliflower. I realized at that moment how powerful prayer and the practice of Reiki really were. The lady, I found out months later, did well for a few months after that, but then eventually died from the breast cancer.
I practiced Reiki therapy on Sharon each day hoping for some response from her. I began to notice that when I did the Reiki, Sharon would close her eyes and seemed to be quite calm and free of any pain. After work I would drive over to the hospital and spend a few hours with her sitting by her bed, talking to her, and looking for signs of improvement. Sharon had speech and occupational therapy sessions on a regular basis, but seemed to be making no progress.
After three weeks in the hospital with no signs of improvement and after a conference with the neurosurgeon and therapists, it was decided Sharon should be transferred to the Rehabilitation Institute in Portland. The Rehabilitation Institute was designed so that patients would have more intensive therapies on a daily basis. Sharon was transferred and began physical and speech therapy three times daily. Sharon had Botox and phenol injections to help prevent the progression of the severe contractures she was having in her feet and hands. Her feet and hands were curled and tightly contracted due to the brain injury. Sharon would grimace with pain each time these injections were given, and she seemed to experience more pain from the injections than the pain from the contractures.
On December 2, I became concerned that Sharon was not improving and getting worse with no responses at all, even to pain. Her eyes were closed most of the time, and she was very sleepy all of the time. I knew something was very wrong. I contacted her doctor, and he advised another CAT scan and blood work to check the Dilantin level she was taking. The doctor also called in an Ear, Nose, and Throat Specialist and her advice was that Sharon needed to have laser therapy. Scar tissue had built up around the tracheotomy site and her Dilantin level was too high and could be the cause of her lethargy. She was transferred back to the hospital where the laser surgery was done. At the time of the laser surgery, it was discovered her tracheotomy site was 75 percent closed. I asked the Ear, Nose and Throat physician to show me how to do the tracheotomy care, because I wanted to be involved in her care and to oversee that it was done correctly. On December 9, the neurosurgeon did a spinal tap to make sure Sharon was not having any infections and ordered another CAT scan of her brain. The results came back that there was no infection, but there was once again increased intracranial pressure on the right side of her brain. Another shunt surgery had to be scheduled.
After another week in the hospital with no signs of improvement, the neurosurgeon told us Sharon was in a persistent vegetative state. He suggested the best course of treatment would be to transfer Sharon to a long-term rehabilitation center in Gresham, Oregon. Disappointed and depressed with all the therapies we had tried, we felt we had no alternative but to take the doctor’s suggestion with the hope that with time Sharon would come out of the coma. We made arrangements for Sharon to be transferred.
Ron, Chris, and I met the ambulance transporting Sharon at the rehabilitation center. We completed all the necessary paperwork and followed the attendant and Sharon to her room. It was a small room with two beds, and Sharon would be sharing the room with another patient who obviously also had a brain injury. She was older than Sharon and seemed upset at the idea of another person in her room. I felt helpless about the situation. We couldn’t take care of her at home. She required twenty-four-hour skilled nursing care, and here she would have the skilled care she needed as well as daily physical and occupational therapy. I left her room that day in tears and not sure we had made the right decision.
I visited Sharon twice a week doing Reiki and massage therapy. The staff seemed pleasant and attentive to her needs, and over the course of the next several weeks, I realized we had made the right decision, and she was being well taken care of.
Ron and I met with the speech pathologist at the rehabilitation center, and he suggested a coma stimulation program for Sharon. Unfortunately, the staff was not equipped to do this, nor did they have the time that would be required, so Ron, who was unemployed, took on the task of visiting Sharon each day and began, under the guidance of the speech therapist, to do coma stimulation. He used different types of material from satin to coarse cloth and rubbed it on Sharon’s skin. He also had different scents from flowers to vinegar, which he would pass under her nose. Bells and whistle were also a part of the program. Ron continued this on a daily basis for six months at which time the speech pathologist determined that it was not making a difference, and there was no response from Sharon. We still had not given up hope completely as we watched other individuals in the rehabilitation center who had had similar accidents show some progress.
In the next few months, there were several trips to emergency rooms to treat Sharon for urinary tract infections to have her urinary catheter removed and visits to the neurosurgeon to make sure the shunt was still functioning properly and to have her feeding tube replaced. Each time Sharon was transported by ambulance. There were always two paramedics who took care of Sharon on each trip. Our emotions were on a roller coaster. At first it seemed like she was responding. One day Chris played a toy xylophone for her, and she seemed to lift her head. We would become hopeful when we saw any sign no matter how small, and then she would go days without any response.