Nov 17, 2013

State of the Heart Hospice helps hospice patient with life review video

GREENVILLE - There are many words to describe State of the Heart Hospice patient 16-year-old Corynna Strawser: insightful, courageous, creative, witty, gifted, inspirational, wise beyond her years. Perhaps the word to best describe her though is “determined.” Facing a life-limiting illness, she was determined this fall to complete a life review video with the help of State of the Heart.

“I wanted to create the video for my parents and friends to see and go back to occasionally to remember me. In the video I wanted to thank my parents and family and so many people who were important in my life and who did things that meant so much to me,” she explained, speaking from a hospital bed in her home in Greenville. “Those people have had an impact on my life and they were a part of making me who I am today.”

It was a year ago that Corynna was diagnosed, after several years of battling illnesses, with Mitochondrial Disease for which there is no cure. The disease is genetic in nature and results from failures of the specialized compartments in every cell in the body except red blood cells. The mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. Cell injury occurs along with the death of the cells. The body’s systems begin to fail and the patient’s health is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Corynna suffers from gastrointestinal issues and has not had solid food since May of 2012.

Corynna’s mother, Kristi, a former nurse for State of the Heart, said she knew her daughter would eventually become a State of the Heart patient. In August, she explained, Corynna experienced a significant decline “and I knew it was time for hospice.” The assistance was immediately welcomed. Kristi’s fellow co-worker and friend, hospice nurse Heather Bankson became Corynna’s nurse taking on the task of care and interacting with physicians and pharmacies, relieving Kristi of these tasks so she could devote more time to her daughter. A hospice aide comes in to help with care, and one of the agency’s pet therapy dogs paid a visit to Corynna.

Kristi explained the subject of death has not been “scary” to Corynna, Kristi, and Corynna’s father Sean. “The fact I was a hospice nurse helped a lot. We often talked openly of death. We determined as a family we would approach this situation with a minimum of crying. We don’t want crying to take away from the quality time we have left.”

Corynna added, she “values the time the family has left together. We laugh, we joke, we relax. We are not an uptight family.” Last summer, a group of volunteers helped design and build a room on the main level of the family home so Corynna could be on the same level with the rest of the family. Today, all activities including visitors, center around “Corynna’s Room” right next to the kitchen and living room.

Corynna is aware of her short time remaining with family and friends. “I have said quite often my disease is genetic and is in my DNA,” she said. “God has had this plan for me all along. This is the life I was meant to live.” By telling her story and having a high profile in the Greenville area, she has accomplished another mission and that is to make people more aware of Mitochondrial Disease. A PBS television crew from Akron is preparing a video on her and the disease that will eventually take her life. That video will be directed toward the medical community and the community at large as an educational initiative about the fatal disease.

Realizing her life was limited, Corynna sensed there was something else she needed to do. Pam Pohlman, who had worked closely with Kristi when the two were co-workers at State of the Heart Hospice, entered the picture. “I was having some trouble in my conversations with Corynna and felt she needed someone to talk to,” said Kristi. She discussed it with Pam, who is a Social Worker for State of the Heart, and Pam began visiting Corynna. Pam began visiting Corynna in January of this year, before she was a hospice patient. “They hit it off right away,” Kristi said.

“I describe myself as an ‘emotionally supportive friend’,” Pam explained. “I was not there representing Hospice, but my social worker professional skills came into play with my interaction with Corynna.” It was Pam who suggested to Corynna they consider doing a “life review.” Corynna was very receptive to the video. In addition to assuring patients facing life limiting illnesses remain in their home, State of the Heart Hospice staff go “above and beyond” to satisfy patient and family needs. Life review is often a part of that.

As a hospice social worker, Pam had done many life reviews with patients. “Life review by someone helps that person know they have made a difference in this world and meant something to their family and friends and others they have interacted with,” Pam explained. “The life review is a legacy, helping to validate and give meaning to their life.”

Time was of the essence if the life review was to be completed as Corynna’s energy was declining. Normally, a hospice volunteer helps with life review videos, but in this instance the volunteer was unavailable. Mindy Stebbins, Director of Marketing and Public Relations for State of the Heart, entered the picture. With a background in photography before her career in health care, she had a good eye for visual elements.

Mindy and her husband Jason are family friends of the Strawsers. It was Jason, a general contractor, who designed the layout for what became known as “Corynna’s Room.” With the help of friend Mark Wolf and many volunteers, and financial support from the community, the room was added last summer.

Without even pondering the question of doing the video, Mindy agreed to do the video work, assisting Pam with the life review. She also knew Corynna and had a good rapport with the teenager.

“They were perfect for this as they are two special people,” Corynna said. Mindy was a friend of the Strawsers, knew Corynna well, and Pam had become a trusted friend and supporter.

Over the period of two weeks, the team – Corynna, Pam and Mindy – completed ten interviews basing the questions from an outline the family had acquired. Work on the video slowed at times as Corynna’s energy varied from day to day. The one hour video titled “Corynna’s Reflections” is complete now. For both Pam and Mindy the experience of working on the video was more than memorable.

“The experience was a blessing for me to have the privilege of being a part of this special young lady’s life as well as her family’s,” Pam said. Mindy added, “I learned so much about life from a 16-year-old and I am twice her age. I am a different person now, a different parent. I look more closely at the grand scheme of life.”

It was important to Corynna, Mindy explained, “that she would not be forgotten. I said to her: ‘I promise you I will never forget you. The last ten days of my life doing the video with you will be something I will never forget. I promise.”

The family still has fun times and reminisces. Recently Pam and her husband Dr. Don Pohlman visited New York City. “The Strawser family had visited New York City,” Pam explained, “and they had a cake from a bakery called ‘Juniors’ in Times Square. They loved it. We brought a cake back to them, packing it in dry ice.”

Listening to Pam talk of her visit to New York City was exciting for Corynna. She was an accomplished dancer before her illness took over her life and she had had hoped to move to New York City and live there. “It is a magic place to me,” she said. On a trip arranged by the Special Wish Foundation, she had the opportunity to do something few people her age get to do. When dancing was no longer something she could do, she turned to makeup artistry as her creative outlet and connected with professionals in the makeup profession while in New York. “They took me backstage of the musical “Wicked” and I got to see the special effects they did and all of the makeup that was done.” Her eyes light up as she recalls the memorable experience.

Speaking of the life review video, she said, “I am glad it is finished. It was quite an accomplishment, particularly knowing what it was all about.” She realistically faces the future, her mother Kristi said. “Her funeral has been planned out as a celebration of life. She is going home. We will wear colorful clothes, not black. We realize she is going to a better place.”

Asked when her family and friends would be able to view the video, she said, “After I am gone. Then they can look at it.”

Pictured with Corrynna preparing to do an interview is left to right, Pam Pohlman, Kristy Strawser, and Mindy Stebbins.

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