This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018. Follow along!
More than 25 years ago, I was living a life I loved. I was healthy, recently married, living in a newly purchased home, and had just become a partner at a successful construction company building high end custom homes. Building homes allowed me to be creative, engage my imagination, and help people achieve their dream home. I had no idea everything I loved in life would soon be shattered by epilepsy, losing everything I cherished.
One evening after getting home from work, I was taking a shower and, that’s all I remember. I woke up in an emergency room being told I had passed out in the shower resulting in a small impact fracture in my skull and multiple neck fractures. At this first, of soon to be many, ER visits, I wasn’t told this was the start of my epilepsy journey; I was told this was going to be a cardiac journey. I figured my doctors knew what they were talking about so I continued working and driving.
A little bit of luck
Driving home one night I passed out. I was told my work van went through an irrigation building and ended up in an irrigation canal full of water. Someone was looking out for me that night because an air trauma nurse was going to work and her headlights hit my van’s tail lights sticking out of the water. This is when my cardiac journey ended and my epilepsy journey officially started. I was told I have epilepsy. I didn’t know anything about epilepsy or seizures. The prior year and a half all I studied was syncope and reasons why someone may pass out from cardiac issues. I didn’t study epilepsy or learn how I would slowly lose my identity and feeling of self-worth. I felt helpless. I was becoming my epilepsy diagnosis.
I’ve lost track of the number of times I’ve woken up in an ambulance after someone called 911 because I had a seizure. At this stage in my life, I was experiencing very large seizures that resulted in broken bones and teeth, dislocated joints, torn muscles, lacerations, heart stopping, and constant mental chaos. I started accepting that doctors might not find a seizure treatment that worked for me. I found this treatment insight the motivating factor for me in changing my mindset. Instead of me waiting for seizure treatments to be found, I realized needed to be in charge of my own life and find ways to move forward.
I was living my life in a constant and repeating cycle of what I call my four R’s:
- Regenerative: post-seizure, re-growing muscle tissue, brain connections, my state of being.
- Rehabilitative: through repeated actions to make myself physically and mentally fit again after a seizure.
- Restorative: restoring my health, ability to speak, and have a restored sense of well-being.
- Resilience: I was always amazed at how my body and mind was able to recover quickly from the trauma of seizures. Epilepsy tried to stretch me to the breaking point, through adversity and misfortune, but I was resilient, and, I recovered.
Small Smart Goals
I noticed during all the years of waiting for a seizure treatment to be found, I had put my life on hold. I decided to change, to become more focused on living in the present moment, to focus on getting through the day the best I could. Being present helped me know my body, my mental state, my environment, and my behaviors. I told epilepsy “I’m going that way, if you want to tag along, that’s fine, or if you want to stay behind, that’s even better.”
I set some monthly goals like paying rent, but the most impactful thing I did was to break my day down in to small daily goals. From waking up in the morning to going to bed, my small goals were purposeful and made me feel good because I was able to accomplish them, like walking my dogs, or making someone laugh.
Back to school self-image and self-worth
I realized I didn’t really know who I was anymore. Epilepsy had stripped away my sense-of-being many years earlier. After years of mental and physical trauma from seizures, I needed to assess what my abilities were. I decided to go to college. My first class was ‘Career Explorations’ to help me possibly find a job I would enjoy while also helping me feel I was providing for myself. Going back to college helped me become aware of the effects years of seizures and medications had on me. I found I had to be creative in how I learned and completed my class assignments.
Here are a few examples:
- Through my college’s disability center, I took all of my class tests in the testing center, where I was able to have extra time taking tests.
- I found I shouldn’t wait until one or two days to start an assignment before it was due because the odds that I would have a seizure preventing me from completing a class assignment was pretty high.
- I noticed seizure medications had a strong effect on my cognition, so I planned my test taking when I felt my medications weren’t affecting me mentally.
- I got off the bus one stop before my college to get in a little walking exercise, ease my post-seizure body pain, and get a little more blood flow to my head.
- I found if I did all of my assignments at the beginning of the week, I could relax the rest of the week, while all of my classmates were stressed because they waited until the day before the assignment was due.
Mindfulness to manage the journey
One topic I studied in college for many years was mindfulness. Using mindfulness in my own life gave me the ability to be aware of things happening in my life in the present moment. Mindfulness helped me become aware of my feelings, thoughts, and sensations within my body. When I found my body was tight, I could take some deep breaths and focus on relaxing muscles that were tight. If I noticed I was feeling sad, I found something fun to do like playing with my dogs, which always brought a smile to my face.
If I was having negative thoughts about my life, I quickly reminded myself how far I’d come and things I’d accomplished, even if it was just getting through the day! I feel mindfulness was the most important thing for me to discover many of my personal insights during my epilepsy journey.
A positive approach
So, how am I doing today? My epilepsy journey continues today, but what’s different since the start of my epilepsy journey 25 plus years ago is that today I’m in charge of my journey. I decide who I am and what I’m going to do. Yes, I still have epilepsy, still take a seizure medication and use the RNS System.
Today, I live a pretty normal life. Is it the same normal life I lived 25 years ago? No! It’s so much better! I continue to use all of the personal insights I’ve learned throughout the years of living with epilepsy. I volunteer my time sharing my experiences and give support to people living with epilepsy through support and empowerment groups, and as a NeuroPace Patient Educator I get the chance to help patients and families who have questions about a seizure treatment option. These opportunities have given me a reason, a purpose, as to why I went through what I did for so many years living with epilepsy.
Please take a moment and rediscover yourself or discover the new you. Whatever person you find yourself to be today, acknowledge how far you’ve come and just how amazing you are!
NEXT UP: Be sure to check out the next post by Michael at livingwellwithepilepsy.com
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