Colleen was diagnosed with epilepsy in the fifth grade during the winter. Her story started as she was going door to door selling girl scout cookies, when the next thing she knew she was lying on her grandma’s couch covered in snow. She remembered being so confused and was sobbing because she hadn’t known what happened. She was diagnosed with epilepsy that consisted of absent seizures where she can’t remember what is happening five minutes before or five minutes after her episode. She had a friend in her girl scout troop who had been previously diagnosed with epilepsy as well, and was blessed to feel very supported by her and her family during this time. Her friend helped her through the diagnosis and to help find a doctor to fit her needs. When Colleen first met with the neurologist, they had originally told her that the seizure was puberty related and that she would grow out of it. They planned to test her at numerous ages of 16, 18, and 21. The neurologist and her nurse were super sweet and were very supportive to Colleen during this time. A few of Colleen’s close friends knew so they could help in a situation that could possibly occur. There were a few times where Colleen had fears of not being able to get her license or having to quit dance, but is thriving and has pushed through her diagnosis. She has been doing well for the past 6-7 years on her medication and is leading a normal life! During Colleen’s 8th grade year, she decided to join show choir and was also able to thrive doing so even with previous fears that it might bring about triggers! Colleen is so strong and super sweet!! I am so happy to have talk with her and learned a little bit about her own story and diagnosis! You can read below to see some Q&A I discussed with Colleen:
1. How did you feel when you were initially diagnosed with epilepsy?
Colleen was diagnosed in the 5th grade and was she was absolutely terrified after receiving her diagnosis. She thought that epilepsy was going to change the entire way that she lived her life. There were so many things that the doctors were unsure about including if it was a puberty thing and if she would eventually grow out of it. The fact of not knowing for sure and not having complete answers is what made it so scary and brought about so many questions regarding her diagnosis.
2. Were you afraid it would limit what you could or could not do?
She was very scared it would limit what she could and couldn’t do. She was scared she wouldn’t be able to drive and would have to quit dance. With show choir as well it brought about many fears that she would have a hard time with long days, stress, and bright/flashing lights. There were times where she would freak out on stage because she would tend to lock her knees and start to feel “funky”.
3. Did your friends know? If so, how did they feel or treat you?
Not many friends knew about Colleen’s diagnosis, but she made sure to have a few close friends who knew. This way if anything ever happened they would be there to help her tough it.
4. What brought you support and compassion during the initial time after the diagnosis?
Colleen’s friend who had gone through the same situation and diagnosis really brought her comfort and support during the time. She was able to relate to her but also find guidance. Her friend had been going facing epilepsy for four years prior so being able to talk to her and ask questions was very reassuring. Learning that she would not have to give up performing and still being able to be in her element during the time was something very comforting to Colleen.
5. Did your neurologist help you to understand the diagnosis and your treatment?
“100%, she is the sweetest lady in the whole wide world; her and her nurse both!” She has dealt with so many children with epilepsy and was able to explain it to Colleen in a manner she would understand, but also grow with her as she got older. She was very willing to work with Colleen and helped to calm her and feel comfortable with the diagnosis. Was very direct with Colleen and walked her through all of the tests and processes such as her EEG.
6. How has epilepsy affected you? Do you still live life the way you once did before?
Colleen’s diagnosis hasn’t affected her too much as she has been living with it since she was so young. She is still able to lead a normal life and do the things she has always wanted to do. Colleen is always now very aware of herself and her surroundings. Shakes sure to always take care of herself and make sure she is taking her medications.
7. Was there something that really helped you break a barrier for your diagnosis and to help you know you can still achieve great things with a diagnosis such as epilepsy?
Show choir was definitely the biggest one. Colleen has always been a hard worker and strive to do well in school and life. Being able to focus on something other than her diagnosis was very helpful in reminding her that she could do anything and lead a normal life.
8. What are your plans for the future? (job, major, anything)
Collen is currently a sophomore at Trine University in Angola and is an Elementary and Special ED dual license major. Her plan is to work in an intercity school in the 1st-3rd grade. She has wanted to be a teacher since she was in the 1st grade and is living out her dreams.