Living with Epilepsy: How My Community is Helping me Thrive
By Shannon Brown
My epilepsy journey began in 2000 when I was diagnosed with a brain tumor called an ependymoma. This all happened in Long Island, New York, where I was working as a music therapist. I had surgery to remove the tumor, and was treated with radiation, and year after year, my MRIs were showing no growth of the tumor. To this day, there is no growth with the ependymoma. Then out of nowhere in 2022, I was diagnosed with another brain tumor, called an oligodendroglioma. I had another brain surgery and became a “watch and wait” patient. I receive MRI’s every 4 months now as I “watch and wait.” Three months after my second surgery, I had my first tonic-clonic seizure, out of the blue, and then a new journey began. The seizures were about 1 to 2 months apart, and with medication, I am now almost six months seizure-free. I used to wake up to nosebleeds, a bitten tongue, and not knowing where I was, or what had happened, until I came out of it, crawling to get help.
Seizures are certainly the most frightening thing that I have ever been through. I was recently prescribed Nazilam in the event of cluster seizures, along with other medications. Nazilam is administered nasally, and I need someone to spray before, during, or after a seizure, because I don’t have any awareness to do that myself when it’s happening. I keep Nazilam in every room of my house, and I have a “red emergency bag” attached to my purse, which is visible, along with emergency contacts, medication list, and Nazilam. This makes me feel much safer in the event of a seizure.
I don’t remember how I found out about JoshProvides, but now there is such a community around me. It is important to me to experience this journey with others who have been in my shoes, and who understand the daily struggles that an epilepsy diagnosis brings. As a participant in the JoshProvides Epilepsy Support Group meetings, I know that I am not alone, and I’m not the only one experiencing seizures or these feelings of isolation and anxiety. Without the support of this group, I wouldn’t have known all the things I need to do to stay safe. For example, my “red emergency bag” contains my name, date of birth, list of medications, emergency contacts/phone numbers, my Acute Seizure Action Plan (ASAP), and “Seizure First Aid Card.” Also, there are many training courses that I attend which provide me with vital information about seizures.
If not for JoshProvides, I wouldn’t have known about the EpiMonitor device, which alerts my family that I’m having a seizure. Now I wear tags around my neck, and a My ID wrist band. I want to be as safe as I can be, so if I have a seizure in Wal-Mart, for example, anyone will know what to do and will know who they should contact.
I consider myself a regular person who happens to have seizures. I enjoy listening to music (80’s music and 90’s rap!), I am a church organist and pianist which I do weekly, I do arts and crafts and building “adult” Legos, cooking and baking, fishing, swimming, and hanging out with my husband Scott and son Mason, who are my biggest supporters, as well has my dad, step-mom, and mother-in-law.
My message is that I have epilepsy, but epilepsy doesn’t have me!
