life with NES
Having NES I have learned that little things are what matter the most. A beautiful day. Time with friends and family. Hot tea on a chilly Spring morning on the front porch. The little Robin that visits my yard every summer. Dinner out with people I love.
The last major seizure I had lasted more than two hours and cost me my desk job. I hid in the bathroom hoping it wouldn't happen and found myself laying on the floor with my head bouncing off the floor. According to my co-workers, I was gone for over an hour before they even found me and the seizure was still not over. I convulsed at intervals, unable to move or even lift my head intentionally.
I got fired two days later because I couldn't work for more than a few hours at a time as I recovered from the physical ordeal that is a non-epileptic seizure.
In fact, that seizure set me so far back that I had to stop hiking for a year.
No matter how well you do most of the time, when NES knocks you down and it takes you weeks to get back up, you lose jobs. It has been a very challenging obstacle in my adult life. An obstacle I conquered by delving into music full time and then opening a bar with my husband. But problem solving my circumstances is only half the battle.
The other toll is shame. Shame of not being able to hold down a job because employers cannot cater to random sick time that can last weeks and even make you lame for months. It's embarrassing and it is unacceptable in the "real" world. You get in trouble when your best is not what it was yesterday, but there is nothing you can do to change that. So you just feel ashamed of who you are.
I learned to focus on the little things that bring me joy and to stop dwelling on what cannot be helped. I figured out through trial and error what I can and cannot do. I discovered what I really care about, and it is not whether or not I have a 9-5. I care about the people in my life, good food, and being outside.
What do you care most about? What brings you the most joy in life? Even for a moment?
Those little moments are worth more than gold and your closest friends and family more precious than your phone.
- Kelly Ann
I got fired two days later because I couldn't work for more than a few hours at a time as I recovered from the physical ordeal that is a non-epileptic seizure.
In fact, that seizure set me so far back that I had to stop hiking for a year.
No matter how well you do most of the time, when NES knocks you down and it takes you weeks to get back up, you lose jobs. It has been a very challenging obstacle in my adult life. An obstacle I conquered by delving into music full time and then opening a bar with my husband. But problem solving my circumstances is only half the battle.
The other toll is shame. Shame of not being able to hold down a job because employers cannot cater to random sick time that can last weeks and even make you lame for months. It's embarrassing and it is unacceptable in the "real" world. You get in trouble when your best is not what it was yesterday, but there is nothing you can do to change that. So you just feel ashamed of who you are.
I learned to focus on the little things that bring me joy and to stop dwelling on what cannot be helped. I figured out through trial and error what I can and cannot do. I discovered what I really care about, and it is not whether or not I have a 9-5. I care about the people in my life, good food, and being outside.
What do you care most about? What brings you the most joy in life? Even for a moment?
Those little moments are worth more than gold and your closest friends and family more precious than your phone.
- Kelly Ann
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