People count the days, months, years since their last seizure. A month, 6 months, 1 year, years are landmarks worthy of celebration and parties. Epilepsy warriors and heroes are praised by doctors, family, friends, and random people. Its weird how something you have no control over becomes an accomplishment. But when you break that streak its devastating, especially if you had passed landmarks. What you knew would happen eventually just turned everything upside down. Your right back to square one.
My count is four days. My count started over November 22, 2017.
I was seizure free for four years, eleven months, and two weeks. The middle of January would have been five years. I had gone to almost daily seizures to none. A huge accomplishment. Uni and I would have had a feast, celebrated. Five years is a landmark. The accomplishment was gone in less then a minute.
My relationship with the floor is the only thing that I know won’t change with time. Like an old friend, our relationship won’t fade. When I fall, the floor will catch me.
When I was a drama student I had to learn to fall. Stretch, relax, breath, and now fall. Up and do it again. And again. And again. Until it doesn’t hurt. There is an art to falling. The key is to commit. Commit: do not to try to catch yourself. The floor will catch you. Now you can learn to direct your fall. Fall safely, the floor will catch you. After you’ve learned how to fall you put the fall into the lines. And the stage floor will catch you.
After I learned how to fall I put it into practice. If I started to fall I just fell. I was less likely to get injured if I committed to the fall. When my body changed I lost the ability to fall safely. I don’t have the control over my muscles, I can’t make them relax. But, the floor is still there to catch me.
I knew I had a solid bond with the floor a few weeks after I started having pretty regular seizures. I woke on the floor. I knew I had just had a seizure by the looks on peoples faces. I said, “hello floor.” I couldn’t ask “why am I here?” I knew. I couldn’t ask “where am I?” I could tell by looking around. Then I looked at the scared faces and said “I’m alright.” The floor was there to catch me.
The floor is always there to catch me.
The floor is always there to welcome me back.
What does your ribbon look like? We usually see it crafted into a butterfly or given some type of bling. I thought about how the ribbon is more then an awareness object. When we look at the ribbon we think of our loss, struggles, pain, and brokenness. But we also get a sense of togetherness, courage, and strength. It turns a survivor into a warrior. The most important thing about the awareness ribbon is that it is a symbol of hope.
Hope. Romans 8:24-25
“24 For in this hope (of everlasting life) we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.”
I cannot hope to be healed if I’m already healed. I can’t hope for a cure if we have one. I can’t hope to be without pain if I am pain free. Hope inspires people. Seeing hope in others is inspiring. We wouldn’t have any epileptic medicine if hope hadn’t inspired someone. Once we have a cure to epilepsy and migraines, we will hope for an affordable cure. We need hope. To keep hope alive we need patience. We learn patience and we can encourage each other to never give up.
Why did I draw it that way? I am a Christian.
I believe that I should take all my worries and pains to Christ, as the saying goes “take it to the cross.” That is why I started the ribbon faded and torn on the right. I believe Christ will take everything and make it new again. That is why as the ribbon falls to the front of the cross the color changes to just lavender and then ends is a smooth cut. The ribbon is not tied like the traditional ribbon so that it could blow away, Christ is capable of healing-illness and brokenness disappears. All things are possible through Him.
I’ve looked up “brain fog” and its description is a bit different then what I have experienced in relation to epilepsy and migraine. The symptoms I experience included:
- troubles thinking
- short term memory issues
- No concentration or focus
- feeling like I’m outside of what is happening
- unable to process what is going on around me
- problems thinking of words
- problems remembering what words mean
- problem solving
- can’t remember what I’m doing
- mobility issues
- Problems going place to place. Like I have trouble walking from my room to the kitchen because I don’t remember where the kitchen is or what the word kitchen means. What is that? Why should I go there? How do I get there?
- confusion and frustration
Brain fog is a symptom that can be a warning sign and is a symptom experienced while recovering from the seizure. It can last a long time or just a few minutes. I usually experience brain fog for long periods. It is frustrating, especially when the people around me are not understanding. Its especially hard when it happens in public places. There is nowhere to hide and difficulties communicating what is happening. Which is problematic more so if brain fog is a warning sign. There are symptoms a lot worse and more dangerous then brain fog. I think brain fog is more annoying and frustrating symptoms of seizures and migraine. It is one symptom that makes it hard to pass interviews and keep managers happy. But the most important thing about brain fog is that it is a single that there is something amiss with my neurons.
Unlike the media would have you believe, seizures come in a variety of visuals and lengths. There are about 40 types of seizures. And it is not uncommon for a person to experience more then one type of seizure if they have frequent attacks. The image above explains the basics of the different types of epilepsy. The is a difference between epilepsy and seizures. Epilepsy is a condition where the patient experiences several seizures because their is something wrong in the brain. A seizure is what happens to the body during the episode. So if a person has a head injury and experiences one seizure, they don’t have epilepsy. But if the brain was damaged and the person keeps having seizures then the person has epilepsy.
I had my first seizure when I was 19. A genetic defect. I am diagnosed was partial complex epilepsy several years after my first attack. I went several years having frequent seizures. I had an atypical start so it made it difficult to diagnose? I think it had to do with my pain. I had my first seizure on the same day I had my first migraine.
What I do: Usually, my arm with tremble and I start to act a little weird. I will make weird decisions. Then I wonder around, fiddle with my clothes, and mumble. Then my body will get stiff, I’ll fall down, and start shacking. Not like on TV. I start shivering all over my body and now and then a limb will jerk. Sometimes I will stop breathing. After a few minutes I’ll stop and then few minutes latter come to. I will not remember what happened that day and sometimes the night before.
First aid for seizures is not common sense. It is not fair to assume that people know what to do when a person has a seizure. In my experience a person’s first reaction to a seizure is fear and panic. Its because people are uneducated.
To make things even more confusing, different types of seizures require different types of first aid. If a person falls down and convulses they need different treatment then someone who is wondering around or staring out into space.
This image does a good job outlining basic first aid for both. There are two things I would add. First, if the person doesn’t wake up within a few minutes after they are done jerking call an ambulance. It is not something you sleep off immediately. Second, all seizures have one thing in common, when one first comes out of it the person is in a haze. If the person does not regain cognitive abilities they need to go to the hospital. There is a series of questions to ask to test that. Waite a few minutes and then ask:
- What is your name?
- Do you know where you are? (Where are you)
- What is 2+3
- Who is the president?
- How many fingers am I holding up?
EMTs will wait a few minutes and ask the question again if you get a question or two close or wrong. Like I usually say my name is Josh, which is close because it is my brother’s name. If you fail the test EMTs rush you to the hospital. That is why I would recommend adding this to the list.
A unique part of seizure first aid is to be careful not to hurt yourself. Do not help someone fall unless the person is going to fall on something bad. Usually the fall is not what hurts the other person, but it will hurt you. Be mindful of the epileptic’s arms and legs, always sit behind the person. If you get kicked or punched its going to hurt. Do not stick your fingers in the person’s mouth, it could get bit off.
#DareToShop because epilepsy shouldn’t limit us to on-line shopping. Epilepsy shouldn’t take away window shopping, which is a great way to exercise and learn about new trends, toys, and books at the same time.
The second time I cried in my current neurologist’s office was because I had to go shopping for jeans and a bra. Yup, because I had to go shopping. He put me on a new medication that made me gain five pounds. Honestly, I was not going to bring it up. It is not enough weight to be concerned about when it is a possible side effect. But he asked specifically if I had any body changes. One of breasts grew and my waist line had grown just enough to need new pants.
Shopping is hard. Florescent lights are hard for many epileptics. There are triggers sneaking around in bright, loud, crowded areas. Worst of all is the fear of dropping for a good shake around people. People who stand there and think its cool to watch or something. Then someone calls 911. It’s a hectic mess. It’s stressful thinking about it. Shopping is tiring. It takes a lot of energy finding your new size and deciding how many you should buy. How long am I going to be this size? And the guilty feeling of not being able to go look at more stuff with those who came with you.
#DareToShop because you should pick your own clothes, stuff, a boat, dog treats, and try clothes on so you know its comphy before you buy it. I know my sisters like spending time with me out in the world and it doesn’t bother them to have to suddenly make our outing short. And my niece, the homebody, prefers it, “Auntie are you feeling like we need to go home? Are you dizzy yet?” I am off by myself feeling guilty and thinking that I shouldn’t have come because they would have had more fun. #DareToShop because you should if you miss it or because its good way of socializing. #DareToShop because of that time I found Noritake teacups for 0.50$.
Work sucks. Employers know the loop holes and take advantage of them. It makes it hard to work up the courage to even try sometimes. #DareToWork because giving it a shot is worth it. #DareToWork because people lucky enough to work needs a wake up call.
I have received a summons to the boss’s office to every job I’ve worked save one. Each time it was after I had a seizure at work and after I missed at least one day without being able to call in before the work day started. Seizures at work meant I did some crazy out of character stuff, wonder around, and dropped shaking uncontrollably without remembering a thing. Calling in before the work day or shift means that my seizure had begun right before I had to leave for work. This means I was physically incapable and alone. Also meant I could be hours late for work or not show up until the next day and not realize it.
Long story short. My nurologist had just changed my medicine and I notified my supervisor. I was two hours late for work. I did not come to my senses until I had been there typing fffffffhhhhhhhffffffflkkj jiofjssssssssijjfffkkkkkkkkssssssssss for several hours. I had gotten into the shower in my work clothes and didn’t dry off or change. After lunch a student complained about not being notified that class had been cancelled. I got an email from my boss about the same time I came to my senses. “I’m cold. Why am I wet?. How did I get here?” My memory of the rest of the day is very sketchy. A few weeks latter when I got to work my pre-seizure behaviors started but it was not noticed until about two hours latter when class started. I sent students to the office three times, could not communicate, and was unprofessional. About twenty minutes after class I dropped. I don’t remember much of the day.
I got a warning that if I skipped classes and behaved disrespectfully or unprofessional again I was going to loose my scholarships and be fired. If I could not do these I was not fulfilling job requirements.
At my next job was cleaning a nursing home. My manager could not figure out if she could legally fire me. And it got worse after I had a seizure at work. She got other employees to complain to me/administration and pressure me to quit. People in my department, nurses, and aids. After two months the residents began bickering with each other about it.
The manager and assistant manager started giving me a reason I needed to quit every time no one else was in earshot. I got in trouble for crap reasons and got a pay cut. I decided she was firing me. I was disappointed when my Botox doctor made me quit. Botox lowers your immune system and he banned me was chemicals. I tried to give notice through the end of the month, so my coworkers schedules wouldn’t change, she didn’t let me. Wrote down no notice.
Remember I had one employer who backed me up? I cleaned banks for four years. I worked 10-12 hours a week. My manager respected the doctors recommendation. It was a company that has contracts with the bank. The bank allowed three of their fluorescent lights start flicker. I seized. My manager called the bank. He he said, “My worker has epilepsy, she had a small seizure. These (specific ones) needs changed before she can come back to work.” The bank’s legal department had a tantrum. Was sure I was suing. I had to refuse a meeting at the bank, suggested somewhere else. They saw it as a sign of war. It took two months to change three light bulbs. The lawyers had to reach a settlement. I signed a contract, if they changed the light bulbs I would not sue. I had to refuse to go to work. I thought I was getting fired. No, I got my banks back and paid vacation. They had ligament grounds to fire me and the boss called to assure me that I was not getting fired.
There are awesome employers. It is sad that they are so hard to find. #DareToWord because a good experience is possible. #DareToWork because sometime managers or basses need to be taken down a notch and be to told to take that job and shove it.
The only medical show I had ever watched before my diagnosis was “MASH 4077th.” I didn’t know anyone with epilepsy or seizures. So the first time I heard the word “epilepsy” was when I was diagnosed at nineteen years old. The neurologist did not do a good job explaining what was happening to my body. Everything I found online confused me more. I was scared. Strange things were happening to my body and memory. These strange things scared the people around me. We didn’t know how to talk about it. I didn’t know the vocab. None of my friends new it. Talking about it was apologies, singing the “Peppermint Twist,” and jokes. Dealing was taking my medicine, learning to hide bruises, and getting really good at selling my excuse. There was only one thing on my mind, when is the next attack going to happen and who is it going to freak out?
It did not have to be that way. That is why Epilepsy Awareness is important. If I had been educated about what was happening I could have been prepared, not left in a state of constant dread. If even one person around me had been educated about epilepsy then my entire college experience would have been very different and the experiences of my friends and family would have been better.
The National Epilepsy Foundation awareness campaign is #DareTo and talkaboutit.org I could not find a blog challenge so I am going to try to talk about it over the month.
Stories that inspire through real stories by real people facing real challenges. Having a disability or disease doesn’t have to be isolating. U.S. Pain Foundation partnered with The Mighty to allow pain warriors a safe platform to face their adversity with the pain community. Today’s challenge is to read one featured story from The Mighty and then SHARE it on social media.
“Why the World Shouldn’t View Acceptance of Our Illnesses as Giving Up”
By Selena Wilson