Kutztown >> Out of insomnia comes art.
For Emma Ketterer, 12, life has presented her with many challenges due to a condition that many do not understand.
“For almost a year Emma has been struggling with extreme fatigue and nausea with other sporadic symptoms which caused her to miss two thirds of her 6th grade year,” explained her mother, Suellen. “She was finally diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS, in March.”
The Kutztown Middle Schooler is now doing homebound instruction, since her condition prevents her from attending school on a regular basis.
“It’s very hard for me to stay caught up in all the work they’re doing because there will be days when I can’t get up or do anything,” said Emma.
Suellen explained that the condition causes many of Emma’s autonomic systems to not function correctly, like heart rate, blood pressure, digestion, energy level, and sleep. “Unfortunately, there is no cure and medication so far has not been helpful in getting her back to a more normal life.”
While struggling with insomnia, Emma taught herself how to draw portraits “during the wee hours of the morning in an attempt to stay quiet so the rest of our family could sleep. She has always been creative and artistic, but has never had any formal art classes,” said Suellen.
Emma won three first place and two second place ribbons out of five entries at the Kutztown Fair this summer for her art, one of which won Best In Show for the youth category. The others were against adults for her pencil and charcoal sketches.
“During this difficult time in our family’s life, the ‘art of insomnia’ has been a bit of a silver lining,” said her mother.
“I wasn’t able to sleep very well, so I’d be drawing at 3 and 4 in the morning,” said Emma. “I did that for about two months until my condition worsened so I wasn’t able to focus well enough to do that. Then, I discovered photography.”
She now spends her wakeful nights planning her conceptional portrait photography, in which she is the subject. View her photography on Emma’s Instagram account hall.x. which has about 700 followers.
“It has made life a lot harder but I think that it’s really made me appreciate what other people go through… it took me awhile to accept that I was never going to have a normal day again, it was never going to be like it used to be. After I accepted that, it was more about how I can then use my abilities to do something that can inspire other people. It’s exciting to me that I can express my feelings through my photos.”
After sharing her photos on instagram, people often thank her because it has helped them.
“It’s really amazing. I never really thought something so good could come out of something so bad.”
They wanted to share Emma’s story to help raise awareness about POTS.
“We thought maybe it would be helpful for others to shed some light on this obscure chronic condition that is widely under-diagnosed or misdiagnosed as Chronic Fatigue Syndrome or even depression,” said Suellen.
“POTS isn’t a very known condition,” said Emma. “It was very hard to adjust. You really have to alter your everyday lifestyle. There’s no consistency.”
“Looking at Emma you wouldn’t know anything is wrong with her,” said Suellen. “I think that’s the frustrating thing about this.”
“It has been very hard because it’s hard for people to take something seriously when you can’t really see it happening,” said Emma.
For children dealing with any kind of health condition, Emma said, “It shouldn’t limit you in what you do.”
Involved in the Gifted Program since fourth grade, Emma said it’s important to her to continue with the program. “I understand it’s going to limit me in some ways.”
She had to stop participating in dance and sports and it limits what she can do in school and with friends, but she hopes her photography inspires others.
“I’m hoping it will inspire other kids with diseases and conditions, that there’s always a silver lining to what happens, that something good can come out of all of it,” said Emma.
Emma’s Gifted Class voted to make POTS their awareness project for this school year. “Even if she is unable to personally spread the word about this awful condition, her classmates are choosing to do it for her,” said her mother.
“It’s very touching that they would devote time to that,” said Emma.
Look for the follow-up story in a future issue.
For more information about POTS, visit www.dinet.org.