To the Politicians Voting on Health Care, From a Woman With Epilepsy
Right off the bat, I am about to contradict myself here, so please bear with me. I do not like to generalize and put a group of people in a box, because I feel like that is a dangerous way to view the world. However, lately I’ve found myself doing this with the group looking at health care. I feel like all the people voting for a new health care bill that does not cover preexisting conditions must not be affected by one. I say this because if you or a loved one did have a preexisting condition, would you be able to look them in the eye and say, “Sorry, we’ve decided not to help you today.” Could you in good conscience do that? Where is your empathy?
Well, guess what? #IAmAPreexistingCondition and I want to help those voting to repeal and replace the Affordable Care Act understand what this means for people like me. I wanted to attempt to put some empathy back into society. I have to assume you wouldn’t vote for a bill that does not cover preexisting conditions if you could put yourself in another person’s shoes for a minute.
Other relevant stories:
• Medications for Epilepsy
• Things You Can’t Do with Epilepsy
• Is Epilepsy an Autoimmune Disease
So what exactly would it mean for me if I did not have health insurance? Well for starters, I would not be able to afford my daily medication to prevent seizures. Every day I have to take eight pills to stay seizure free. I can even confirm I need all eight, because I recently tried to decrease the dosage and ended up having a breakthrough grand mal seizure. It’s medicine I absolutely need.
If I did not have access to my medication to stop the seizures, I would be unable to hold a steady job. With health insurance and the appropriate amount of medication, I have a fantastic job and am a very successful member of society. If I was having seizures, there is no way I could work. I would be forced to resign due to consistent absences and cognitive deficiencies caused by the seizures.
I would probably end up back living with my parents, because I would need constant care. When I do have a grand mal seizure, I am unable to care for myself for 24-48 hours, so there is a very good chance I’d end up living at home with my parents… keep in mind, one of them would need to also quit their jobs to care for me… or I would be in an assisted living facility.
In the absolute worst case scenario, I could die from sudden unexplained death in epilepsy (SUDEP). This is a fact. Without health insurance and access to the care I need, I could die from a seizure. I want to be completely honest with you, SUDEP is rare, but the chances of me having a seizure without adequate healthcare are 100 percent.
I’m hoping this gives anybody who wants to repeal and replace the Affordable Care Act with a bill that does not cover preexisting conditions some insight into what life would be like for a person with a preexisting condition like epilepsy. Please put yourself in my shoes for a minute. Or stop and think: what if somebody you loved had a preexisting condition? My hope is that you would change your mind.
By the way, one in every 26 people will develop epilepsy at some point in their lives. You too could be a preexisting condition at some point. #justsayin
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Abby Gustus Alford, author of Seize the Day, was diagnosed with epilepsy at the age of 14. After some tough years, she went on to graduate with two college degrees and her Master’s in Journalism. She started working professionally in St. Louis then moved to Texas. Since moving to Houston, Abby has been very involved in epilepsy awareness and advocacy. She currently serves as a Transition Program mentor for the Epilepsy Foundation of Texas. In addition to her work with the Epilepsy Foundation, Abby has been quoted in the Enlighten: Action for Epilepsy 10th anniversary coffee table book and is a contributing blogger to the Living Well with Epilepsy website. Abby’s intimate, first-hand knowledge of the challenges that come with successfully coping with a diagnosis of epilepsy offers a unique perspective for both parents and teens. She has found through her volunteer work with the Epilepsy Foundation of Texas having someone to talk to about real life experiences, beyond the medical community, is necessary and helpful. Her network within the epilepsy community is continuously growing as she spreads her message of hope and works with people to assure them that they too can lead happy, healthy lives with epilepsy. Seize the Day was written to encourage teens and adults to live the life they have always dreamed of, with an understanding of the emotional and physical struggles one with epilepsy and their families encounter. Her success in her marketing career brought her to Texas, where she now works as the Global Communications Manager for a commercial real estate firm and lives a happy and healthy life with her husband, Evan, and their pride and joy puppies, Huey and Teddy.
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