"Dare to Believe the Whispers in Your Ears,
That You Might be Meaningful,
That You One Day Might Change the World."
Use this space to share an adventure of your own that has something to do with disability:
overcoming a challenge
helping someone in need
dealing with difficult news
making a discovery
saving the day
No judgements, please. Only support permitted in this space.
Keep your submission to 300 words or less, use first names only and no pictures for anonymity's sake, and know that anything you send will be very much appreciated even if it isn't published.
I realize that advice might end up being given here, and you might choose to take it. Understand that any choice you make that is influenced by comments here, you do at your own risk and indemnify/hold harmless Epilectra and all entities associated with her for any harm that is believed to result from any choices made. We are not responsible for your decisions. We encourage you to contact your medical professional for all medical choices.
Sorry for being so formal, but you gotta do what you gotta do.
Please fill out the attached form http://bit.ly/epilectra to submit YOUR Adventure.
I can't wait to read it! Keep your eye on the site, and you might see your heroic adventure here!
Sue's Adventure: Volunteering in Colorado
Before NY I lived in Denver, which is where I was diagnosed with epilepsy. I volunteered with neurology patients at a major hospital there, and I realized they lacked a "go-to" resource for all sorts needs that neuro-typical people take for granted like transportation, education, identification, explanation, and so on. So I created S.E.I.Z.E. -- Support & Empower Individuals Zealously Everyday -- a collection of resources for neurologically impaired patients to help make their lives more livable. These snippets are highlights:
Jalene had difficulty explaining to her children what epilepsy was and why it effected her the way it did. I suggested she compare it to a lightning storm in her brain. In nature when lightning strikes, the lights can go out. Her unusual behavior during a seizure was like lightning striking inside her brain -- the lights go out for a little while, but they always come back on.
Tommy had dropped out of college because his seizures made it hard for him to focus. S.E.I.Z.E. offered options for online education. When I visited the next week, he'd registered for a math and a communications class at one of the online local colleges, and was talking about how good it felt to be moving toward future goals.
Lisa didn't want to wear a medic alert bracelet because she thought it made it look like there was something wrong with her. But when she saw mine, she admired its discretion. She asked me who the manufacturer was, and I told her it was was Lauren's Hope (). The company's info was available in the S.E.I.Z.E. document. She found them online right away and ordered the same bracelet as mine, but in blue.
Many patients were surprised that I ventured out alone with epilepsy, and many thanked me for showing them that independence was possible. They are the inspiration for Epilectra, and S.E.I.Z.E. has morphed into my nonprofit, SEEZ.()
Faye's Adventure: My Biggest Little Miracle
Just like Epilectra, I feel like epilepsy has given me all sorts of special abilities. I was diagnosed at 15, started a program for people with epilepsy who wanted to make friends at 19, and got my Masters in Social Work while battling weekly tonic-clonic seizures at 29. Of all the things I’ve accomplished with epilepsy, I’m most proud of the baby I had with my wonderful husband in March of 2020.
Despite many injuries, my biggest challenge has been facing the sedative and depressive medication side effects and advocating to change them to have a better quality of life. I'm still working on my relationship with the medical world, but feel all my experience has made me more understanding of people and the wide array of physical and emotional symptoms they can go through. I live with the knowledge that I can accomplish whatever I put my mind to, even with barriers in the way, and I have the infinite gratitude for each new day that only comes with having faced my own mortality. I am still in awe that this beautiful body recently created a human being and very curious what my future holds.
Rebecca's Adventure: Embracing my Disability
I live with Cerebral Palsy. I am very fortunate to have a mild case of CP that is mainly invisible, but it still affects me on a daily basis. For the longest time, I was embarrassed about my disability and never talked about it. I was worried that if people knew about it they would look down on me and treat me differently.
In my sophomore year of high school, my speech and debate coach suggested that I write a speech about invisible disabilities and disclose my own. My initial reaction to this was fear. I had no idea that my speech coach even knew about my CP and was terrified about the idea of more people knowing about this. Reluctantly, I took the leap to write my speech about invisible disabilities, and it was one of the best decisions that I ever made. Shortly after I began presenting my speech, I realized that there was nothing to be afraid of. I received an overflow of support and compliments.
Inspired by my experience and research from my speech, I began volunteering with the Invisible Disabilities Association as a part of my IB service project. I was presented with the incredible opportunity of helping to pass legislation in Colorado that would allow a person to voluntarily disclose their invisible disability on state-issued identification to avoid misunderstandings and potentially tragic outcomes with law enforcement. This has been an ongoing process for the past few years, and we are making good progress on this bill after being featured on the local news.
I am currently a freshman at Muhlenberg College on the premed track, and plan to continue embracing my disability to help make the world a better place.