My Epilepsy Journal Part 2

I worry. A lot. About how I’m going to pay my bills now. Compulsively cleaning to keep my mind off of the reality that I cannot drive anymore. I am a stagehand who cannot work in hazardous environments. I am a rigger in training who cannot climb or work at great heights. Essentially, everything I depended on to survive and thrive isn’t an option anymore.

I am a freshly widowed, new homeowner trying to survive and was actually making everything work until now. Turns out, there are no emergency funds or help for people like me who have become suddenly disabled. LIHEAP applications don’t open for disabled and elderly until Oct. 3rd. I was blessed to sell enough art and made the $400 down payment to start the medical payment plan with the utility company half a day before shut off. Only Great Spirit knows what else is coming…

I’ve been writing my whole life. Since last month, keeping a separate journal for epilepsy has been very beneficial in understanding the disorder. I‘m still recovering from a concussion I sustained when my 1st tonic-clonic seizure happened on an asphalt parking lot outside the children’s museum here in Edwardsville, IL during my youngest neice’s birthday party. Thank goodness the children didn’t see anything. I nicked the artery above my left ear and bled out, not in, luckily. There was so much blood the Edwardsville fire department had to come spray off the parking lot after the ambulance took me away. It is so diffucult differentiate the symptoms of my head injury and concussion from the symptoms of epilepsy. I’m likely psyching myself out more than anything because I didn’t know I was epileptic until I experienced my first unprovoked tonic-clonic seizure last month. I’m afraid to sleep or take daytime naps because I have focal seizures, or what I call, sleep paralysis episodes. I believed I was just dreaming until my son heard me calling for help and “woke me up” four times in a day; the day before my first grand mal seizure. For four days, the neurologist kept me at Anderson Hospital to do tests with no results.

My boy is only six years old. Already, he’s been through so much. We lost his father the weekend before we moved into this big, old house that was intended to be our family home. We’ve adjusted and both of my children and I are doing well, except, now they are reliving trauma from nearly three years ago and experiencing anxiety fearing they may lose me too since I was injured. When my son Weilyn witnessed the focal seizures, he told me I was crying out without moving my mouth and blinking rapidly. The strange part is I can see both of us, as if out of body. During these episodes I am totally consious and feel ”stuck” in between sleep and waking. My body becomes a prison for a few minutes. I’ve been having the focal seizures at least 2 or 3 times a month all my life, as often as 2 or 3 times in a day.

While searching for resources, I found ONE epilepsy support group with only 175 members, half of which are probably there just to enjoy the show. What do I do? Where do I go? I’m a widowed, disabled mother on public aid with no family support and two young kids to support. My house, my yard, my new van…all my responsibility. Where do I even begin?

I used to be an independent, stable, self-made woman. I’m educated. I have a stunning resume and one-of-a-kind references. It’s been a nonstop struggle since I lost my husband, my love, my partner. No company wants me because I can’t sell my soul. I am unable to provide any corporation or business all of my time, all my energy, or give up my responsibilities to my home and children. Without complete and total availability, I am worthless. Now, I am also broken. Disabled. At 37 years old.

Where do you go from here?