Thursday, April 19, 2012

Day 19: Chanelle's Heart Filled with Art

Stories of the Heart: Chanelle

Written by Katy Bourne

After becoming depressed, lethargic, and losing grasp of her zest for life, Chanelle Felder knew that something wasn’t right. Because she was a lifelong dancer, she thought she was tuned into her body, yet over the course of a few months, she was beginning to notice that she was unable to move in the graceful and carefree way that she usually did. Her every step was slower, heavier, and—unbeknownst to her—a step in the wrong direction in terms of her well-being. Along with her labored movements, she also began to experience overwhelming fatigue, numbness in her hands and feet, hair loss, terrible acne, and a plethora of depressing ailments…along with actual depression! Next came weight gain and also “brain fog,” an inability to concentrate or even speak coherent sentences. She started having difficulty in some of her favorite classes. This was when her family knew that something was definitely wrong. After a long diagnostic process, an MRI revealed that Chanelle had a tumor on her pituitary gland and she was diagnosed with Cushing’s disease. She was just 16 years old.

Cushing’s disease is a condition in which the pituitary gland produces too much cortisol, a vital hormone that helps the body respond to stress, helps the metabolism of food, and even determines when you wake up in the morning, among other things. Cushing’s disease is usually caused by a tumor on the pituitary gland, which is located at the base of the brain. There are multiple symptoms: fatigue, weight gain, bone pain, stunted growth,  hair loss, muscle weakness, acne, confusion, depression and fatty deposits on the face and between the shoulder blades. Because symptoms mirror those of numerous other conditions, it is often difficult to diagnose, and the first line of treatment involves a special type of brain surgery to remove the tumor and, in some cases, the removal of the adrenal glands is necessary if brain surgery isn’t enough.

With the onset of her illness, Chanelle experienced a range of emotions. She was confused as to why this was happening to her. She was also angry and scared. She was worried for her parents and also struggled with the overwhelming new experience of hospitals, surgeries, medical procedures, complicated diagnoses, and the barrage of needles, IV’s, MRI’s and tests that were necessary to stop the madness that was tearing apart her body and her life. Because she had always been athletic and fit, the changes in her body were particularly distressing. She gained a significant amount of weight and developed “moon face,” a rounding and reddening of the face, which is a common symptom of the disease. “It was very, very difficult,” she recalls “and not being recognized by people that I’ve known my whole life is probably the hardest part of all of this”.

During Chanelle’s first hospitalization, a child life specialist paid her a visit and gave her a copy of Chill & Spill.  Being fiercely creative by nature, Chanelle took to it immediately. She says, “My first impression? I loved it.”

She was drawn to the artwork and liked the interactive quality of the book. She loved the quotes inside the back cover. “A lot of the quotes were so true and just helped me get through some things.”

The writing prompts were also very useful to her, especially when the brain fog made it hard to collect her thoughts. Chill & Spill became more than a journal for Chanelle; by adding her “own things” to it, it became a scrapbook of sorts, or a creative log of her experiences. “I took it everywhere with me, every doctor’s appointment and everything.” She invited people that she met along the way-nurses, doctors, friends and other patients- to sign the book and to write words of encouragement. “The book started out with being an outlet for me to get my thoughts and feelings on paper, but it really became a tool for me to connect to other people.”

Chanelle says that Chill & Spill reinforced that it was OK to feel whatever she was feeling. It also served as a chronicle of her strength throughout a very difficult ordeal. “You can use Chill & Spill as a tool to go back and look through your personal journey, and just see how strong of a person you’ve become out of your experiences.

Chanelle believes that anyone could benefit from Chill & Spill. “It’s all-encompassing. It can help you cope with something that you are going through, whether it is something that is a devastating event as in health problems or a death in the family or just everyday life. Everybody goes through a bummer day when they just need a place to chill and spill.”

Chanelle credits Chill & Spill with helping her get through her illness: “I am just so blessed and so thankful for what Chill & Spill has done for me and for all the things that have come out of just having that notebook. Chill & Spill helped me go from this place where there was nowhere else to go…to a place where now I’m just so thankful for everything I’ve been given.”

NOTE: You may purchase the book Chill & Spill at the Art with Heart Shop.