Today we’d like to introduce you to Channing Seideman
Hi Channing, we’re thrilled to have a chance to learn your story today. So, before we get into specifics, maybe you can briefly walk us through how you got to where you are today?
Like any kid, I had big dreams of what I wanted to be when I grew up. I dreamt of becoming a doctor and an Olympic equestrian. A straight A student and a competitive horse jumper, my dreams were coming true. And then, at the age of nine, the day before a horse show, I had my first seizure. And a few months later, after having my second seizure, I was diagnosed with epilepsy. I became the patient instead of the doctor, and getting to the farm became a struggle.
For four years my family and I saw countless neurologists and epileptologists always clinging to the hope that I would respond to a medication or that I would eventually outgrow it. That hope was crushed after undergoing a VEEG at the NYU Langone Comprehensive Epilepsy Center where I received a lifelong diagnosis of juvenile myoclonic epilepsy.
In that moment my world was turned on its head. I was angry at the thought of an illness taking control of my life and wanted absolutely nothing to do with epilepsy. I wouldn’t even say the word.
Friends turned into caregivers. They meant well, but the dynamic between us changed, and all they ever started asking is, “Are you ok?” Are you ok?”
My ability to retain pertinent information during class was impacted by daily absence seizures. Imagine entering each of your classes and while the answer to a future test question was being given your brain decided to space out. I watched as my grades went from A’s to F’s. Throughout middle school and high school I became a dart board for different medications and medication combinations but my seizures continued to worsen. Somehow, I earned my diploma.
After graduating, my family and I moved from our small town in Colorado to Cincinnati. We tried to create as much independence as we could for me. My mom asked what I wanted to do and I replied with, “I want to be an epilepsy advocate.” This was a huge transformation, going from not being able to say or even hear the word, epilepsy, to, How can I help others? And my mom and dad have been there every step of the way making that a reality.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
Academics:
A large college or university was not in the cards for me. But, I’ve always found the human body fascinating and decided to enroll in the local community college’s EMT class. It was discussed with the instructor and disabilities coordinator prior to the class to ensure there was no problem.
Eventually, I did end up having a tonic-clonic seizure during one of the classes. The following day, however, I received an email from the disabilities coordinator stating that when a student’s circumstances become too disruptive to the learning of the rest of the class this is when the school is allowed to ask the student to drop.
In essence, what they were telling me was, yes, it’s ok to attend Colorado Mountain College if you have epilepsy, but just don’t have any seizures when you’re here.
I chose not to take the legal route and instead wanted to change the mindset of the school, so if another student with epilepsy were to attend this school in the future they would be able to without fear of being treated differently. And successful provisions were made to the student handbook in this regard.
Sports:
While I was fortunate enough to be able to continue the sports that I loved, some safety measures had to be put in place. For skiing there were two concerns: 1) the doctors didn’t want me downhill skiing at 100 mph. That fix was easy because I preferred the moguls. 2) should I have a seizure on the chairlift I needed a way to stay upright and in place. Working with a local organization who had a prototype of a “chairlift seatbelt,” we modified their design and turned a climbing harness, a daisy chain, and a few carabiners into an adjustable seatbelt for the chair ride.
For horseback riding, along with riding in safety stirrups and the highest-rated safety helmet, I also ride in an inflatable vest that attaches to my saddle protecting my neck, spine, and internal organs. The vest itself has a CO2 cartridge built in, so when I separate from the saddle the cartridge inflates the vest in 0.09 seconds before I hit the ground.
Side Effects:
Eventually I was on so much medication to control the severity and frequency of the seizures, that the side effects of the medication impacted my quality of life more than the seizures themselves. It was at this time I resorted to surgery, the vagus nerve stimulator. It is similar to a pacemaker but for the brain!
Thanks – so what else should our readers know about your work and what you’re currently focused on?
I wasn’t able to become the doctor I dreamed of becoming, but I’ve learned to harness my internal anger towards epilepsy and find my own voice as an epilepsy advocate fighting in the arena for the epilepsy warriors who have either lost their battle or are losing their battle to epilepsy. After moving to the Cincinnati area in 2011 with my family we found Majestic Farm. And with their support, in November (epilepsy awareness month), 2018, we turned an annual Turkey Trot horse show into A Call to Purple (purple is the color of epilepsy) where competitors were invited to wear purple and even paint their ponies purple! We had no intention of fundraising yet by the day’s end had raised $750.
The following year Team Channing held the first annual Dressage for a Cause fundraiser with a goal of funding a $100,000 research grant for CURE Epilepsy. I’m lucky to ride horses, and it is an all too rare story told for an epilepsy warrior battling drug-resistant epilepsy. Through social media, Team Channing has connected with epilepsy warriors from around the globe including India, Austria, Ireland, Canada, Australia, and all across the United States, and honors these warriors by embroidering their names in my saddle pad.
Dressage for a Cause has evolved over the past five years to include participant schwag bags stuffed to the brim with donated products to spoil the ponies and what would become known as The Purple Raffle, which, in 2023 gave out over $10,000 in prizes. As a result, Team Channing has raised over $50,000 towards their goal of funding a $100,000 grant.
Team Channing is proud to have just held its first farm-to-table fundraising dinner, Taste of Southern Italy, highlighting local produce and protein in a five-course meal thanks to the incredible team at the brand new restaurant, Flamingo Drive. But for me, that night was the first night I told my story in an intimate setting holding a mic – and it was a little nerve-racking!
Last June an opportunity came my way that I was really excited about – a 750-hour internship with CURE Epilepsy as part of their pilot program, the Community Enrichment Program, allowing people with epilepsy to learn skills that will help them excel in different areas of the workforce such as professional development and leadership, marketing and communications, fundraising, events, and more! It’s been an honor to have kickstarted the program and I look forward to what opportunities it may lead to.
Team Channing has helped shine a light on epilepsy in the Cincinnati area by spearheading the purple lighting of the University of Cincinnati Gardner Neuroscience Institute during the month of November in 2023 and 2024 thanks to a generous donation of an 80′ boom lift from Sunbelt Rentals.
In 2024 it was an honor to take part in Cincinnati’s BLINK parade as one of ten nominated torchbearers for work done impacting our community.
I am also very fortunate to have a seizure-alert dog by my side 24/7, Bishop. When Bishop and I have the opportunity, we enjoy going down to UC Health and spending a couple of hours visiting patients as part of their pet therapy program. Bishop loves the attention!
Is there a quality that you most attribute to your success?
There is no question that I would not be where I am today without the incredible support team I have who continues to stick by my side on not just the good days but the bad days as well. Because of the stigma epilepsy carries, finding this support team can be difficult.
Middle school and high school are a blur. Socially, I quickly found who my true friends were, and academically, graduating seemed out of the question. Thanks to a tutor who worked with me and my amazing parents who set me up for success, I was able to walk down the aisle with a high school diploma in hand, but I was far from accepting epilepsy.
When first diagnosed the words “seizure” and “epilepsy” were not allowed to be said if I was within earshot. I wanted nothing to do with epilepsy, so I leaned hard on my parents to be my voice and looked to sports as an outlet namely horseback riding and skiing. In fact, it wasn’t until after a couple of years living in Cincinnati that I finally did accept epilepsy.
Now settled in Milford, I have found different support networks as they relate to my life. I have my barn family at Majestic Farm who not only welcomed me but brought epilepsy into the arena through A Call to Purple. They then supported me as that awareness carried over into an annual Dressage for a Cause event raising more than $50,000 towards our goal of funding a $100,000 grant.
My UC Health family started with my epileptologist. Then it grew to the volunteer office when I began pet therapy. And after pet therapy started I knew everyone on the neuro floor!
Throughout the 14 years my family and I have been here we’ve met some great friends. They have asked questions to better try to understand what it is like living with epilepsy. It’s difficult to understand something you can’t see or do not see often. Especially something like epilepsy that is already shrouded in stigma.
But the one constant in my support network remains the four-legged, furry friends that my world revolves around. Of course, there’s my horse, Perla who has been my partner in the arena for 16 years. But, in 2010 I was fortunate enough to be the recipient of a seizure-response dog from Canine Assistants, Georgie. As a seizure-response dog, Georgie helped me after I had a seizure. She would get the meds, get help, get the phone, and be the warm nose I woke up to after a tonic-clonic seizure instead of a stranger with a stethoscope. But the bond between Georgie and I went beyond anything I could ever imagine, and I’ll never forget when I clipped Georgie to the fence while I went to catch a horse in the pasture, and when I returned all I saw was a dangling leash, a highway, and no Georgie in sight. My heart sank. Until, all of a sudden, there was a jingle. A jingle I recognized all too well as Georgie’s collar and dog tags. I turned my head and there she was! She had managed to split a nylon leash in half so she could get to a place where I wasn’t out of view while I went to catch the horse. She needed to make sure I was okay. Georgie and I were connected at the hip and walked down the graduation aisle together.
Now, keeping it in the family, Georgie’s great nephew, Bishop, is having to fill some big paws. Unlike Georgie, Bishop is a seizure-alert dog. He can tell me when I am going to have a seizure. Some people with epilepsy have an aura or other “warning sign” prior to their seizures. Instead, I have Bishop! And knock on wood, there isn’t one seizure Bishop has missed! In short, he is my lifeline.
Contact Info:
- Website: https://www.teamchanning.org
- Instagram: @team_channing
- Facebook: @TeamChanningGeorge
- LinkedIn: https://linkedin.com/in/channing-seideman
- Other: https://linktr.ee/TeamChanning
