Mad at life right now. Mad at Epilepsy

By: Mary B

My teenage son had a seizure at school today. This was his first observed one. He had been complaining recently of feeling disoriented and nauseous. Today, his teacher actually observed it happening and he was briefly unresponsive while drooling. There are other things my son has been mentioning that help make this “click”. They’re always the same things- disoriented, dreamlike state of not knowing where’s he’s at, frustrated with what he missed the teacher saying and not being able to understand, fatigue.

The teacher called to inform me that he had had a seizure and he didn’t question if maybe it wasn’t one. He was confident that it was because my son stopped mid sentence and sat down and became unresponsive and drooling. His speech was slurred afterwards and he was very confused.

Instantly a flood of emotions rushed over me when he said, “Jonah had a seizure. He’s okay now.” It took me back to being a teen and experiencing grand mal seizures. At a friend’s house, in the shower before school, once in using the restroom, while I was pregnant and this being how I found out, etc. Personally, this was awful. The auras, the physical soreness afterwards and feeling so disoriented and mad and always sad. So mad for having another seizure and it taking me away from being a normal teen. Having seizures for years that it now affect my speech and ability to communicate face to face. Having to take medicine that made me more sick. I struggled with compliance for years because of how sick the medications made me. I didn’t know what were normal seizure feelings and what were the side effects of meds. They all made me feel dumb on top of the seizures causing brain damage. The meds numb areas of your brain to control the over activity of electrical activity in your brain that causes the seizures. Speech, memory, and emotions are the big areas it affects.

Now I have Epilepsy, Lupus, Neuralgia in my hip, leg and foot, and Fibromyalgia. I’m struggling day to day with my challenges and overcoming the feelings of coping.

I’m struggling feeling mad at myself for feeling bad when people are more sick and suffering worse things than I am.

My son has special needs. He has chromosome 18q- and up until now, I’ve felt confident in my ability to learn more and be more for him. Never in my life would I believe I’ve learned the things I have about SO many medical complexities! So many! Over the years, I’ve learned to advocate for myself but also for him. I’ve taught him how to be a self advocate. I’ve helped others learn how to be an advocate for themselves and their kids. I worked alongside professionals in education and in medicine. I’ve met the most incredible human beings. I’ve felt isolated.

Now, I just feel mad. I will get through the mad and walk strongly and confidently forward to advocate for him once again, soon. Tomorrow after a good ugly cry tonight, I’ll rise to the occasion at my son’s appointment with his primary physician to get the ball rolling. I know exactly what he needs to start this process. I’ve been here before. I hate this beginning. Maybe my healing will be helping walk alongside my son as the friend and advocate I needed when I was on this journey as a teen and adult. Maybe that’s the gift here. I’ve spent 25 years learning to control my seizures and work with neurologists to find the best fit.

This one scares me though- more than his other diagnoses. I’ve been here before, for myself. It hasn’t been easy. It’s been a mixture of a lot of emotions. The biggest one being frustration. It feels like chains of a diagnosis you can’t control. Seizures are something you can’t help but be held back by. They are suffocating. I hate that my son is feeling this way. I hate that he will have to go through more struggle. It’s not fair…at all.

It will get easier. Right now, I am thankful that Jonah has the best mom to advocate for this diagnosis. I know what this one feels like. Finally, I know how he feels. I can be what he needs.

Jonah is scheduled to have new bilateral hearing implants surgery in November. These will not allow him to have mri’s unless surgically removed. This has taken months of appeals to get approved by insurance. He needs medical clearance by his pcp prior to surgery. I’m hoping we can get all the testing done for more definitive answers in time. He’s made the decision with such careful consideration. He’s so excited to hear better. The new goal is for him to feel better first. His life has always been about prioritizing diagnosis and the balance of them all. Autism makes these things more complex. I’ve learned to listen to him more, and what I think he needs slightly less. His choice is most important. It’s his journey.

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