Epilepsy Talk

What Is Your Inspiration? | December 16, 2021

“I want people with epilepsy to know that there are ways in which they can play a role in their own recovery.

It’s all in how they approach what is happening and how they can use that as a catalyst for their own growth.

If there’s one thing that I’ve learned, it’s that people are willing to embrace you if you share your story.”  —  Danny Glover

 

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21 Comments »

  1. Along your path you learn lessons and gain the tools and resources to help others by sharing your story. Please share your story with others. Your story will heal others and have a mirror effect and help heal you.

    Liked by 1 person

    Comment by Sue K — December 16, 2021 @ 9:38 AM

  2. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — December 16, 2021 @ 9:43 AM

  3. Thank you Danny Glover! I started in the field of law but headaches were a culprit. I thought my seizures were under control. I am blessed to be alive. The new medications are helping. Trying other protocols like yoga and relaxation therapy and working in Research is great!

    Liked by 1 person

    Comment by Toni Robison — December 16, 2021 @ 9:54 AM

  4. My inspiration is my epilepsy. Try to follow me. It’s led to hundreds of friends I now talk to but let me tell you how it saved my life.

    When I had my car accident “caused by a seizure” that led to my temporal lobectomy that led to total control of seizures. But it also caused spinal issues.

    Two years ago, I had an MRI to check out the spine and that’s when they saw something else. I have an abdominal aortic aneurysm and to put it in easy terms, the aorta is getting too big and ready to explode which could be fatal. Instead, since they found it early enough to keep an eye on it, they have me set up for surgery next month to fix it.

    So can’t I say my epilepsy caused the seizure that caused the accident that led to the MRI that alerted the doctors of a life-threatening situation? I feel I can say, “EPILEPSY SAVED MY LIFE!”

    And after a temporal lobectomy, I have no fear of any kind of surgery.

    Like

    Comment by Ed Lugge — December 16, 2021 @ 12:13 PM

    • Dear, dear Ed, you’ve been so brave before, I’m sure that same courage will carry you through.

      You’ll be in my heart and in my prayers.

      Like

      Comment by Phylis Feiner Johnson — December 16, 2021 @ 1:52 PM

  5. Love ❤️ your story❣️

    Liked by 1 person

    Comment by Toni Robison — December 16, 2021 @ 12:32 PM

  6. My inspiration? Knowing how lucky I am. Yes I have epilepsy and yes the side effects of phenytoin are horrible ..but….many years ago I spent a lot of time working in Africa and I saw people dying of poverty of malaria of fiariasis and other tropical diseases. And even today in many parts of Agrica the liife expectancy is only about 50 years and AIDS and TB as well as malaria, poverty and water shortages make peoples lives horribly miserable and horribly short. Many of the people on this website share their stories of surviving against the odds. Clearly they too are lucky. Isnt that inspiring?

    Liked by 1 person

    Comment by Michael H — December 16, 2021 @ 1:19 PM

  7. Who is ”lucky”? when they believe in & have God’s eye watching over them ? Psalm 32:8 says I will instruct thee and teach thee in the way thou shall go. I will guide thee with my eye upon you. My aunt passed away last week and she had no vision at all for almost 50 of her last years of 95 she lived. I always put that verse in her birthday cards or some other cards that our church use to send to her. It is going to be strange & hard not hearing things about her & me saying to send to her a card, as she now is with God & now has her sight back. Last week in bowling I had a 3 game series of 742, so she saw what I was as a bowler at times for 3 games & i did that all for her where after 55 years of bowling that she never saw me bowl, but now she knows & seen me bowling fir her 1st time from a view in Heaven. LUCKY is not a word for either of us & she knew as I know we both have been BLESSED because God was & still is always there. Now she is a lot closer to Jesus than ever, and she has her sight back. One day I am not going to have my seizures, & I will be with my aunt & see her again, as better than when I saw her back in April when she looked good at 2 months after turning 95 in April. My aunt for many of years was my inspiration, & she for all of 61 years prayed that my seizures will one day end for me. Maybe I have to be like her & die as she did to end the seizures, as she died to get back her sight, but she wanted to die & had been hoping for that to happen in the past 10+ years since my uncle/her husband passed on. On 12-07-21 that dream & desire she had came to pass. I know this seizure life is NOT all life it to be on this earth, but for some of us, it seems to never leave us no matter what doctor says we have to do this, that & the other, BUT God is in control, and there in NO LUCK added to that.

    Liked by 1 person

    Comment by James D — December 16, 2021 @ 4:27 PM

  8. Only comment I can say is “you’re definitely not in Ontario,Canada for that statement of embracing you after telling people that you live with Epilepsy!”

    I’ve been through Hell and back and Hell again!!
    The only positive was my fiancé (if he still is) loved me for me. My family in a different part of the world the same. After I relocated to my second apartment reluctantly I haven’t had any positive people around me that are still alive now!

    I can’t even contact my family or friends who knew that I live with Epilepsy because I was locked out of my apartment and now in 2021 I find out that it was “just a joke to those idiots that broke into my apartment for the 7years that I was in there with my fur baby feline who was stolen from me because of his “fur color” originally and my love of reading books on everything that interested me on my internet or books which ever was less expensive and easier to find!

    Because I am a woman who lives with Epilepsy and I have been living independently and successfully with rescued/adopted fur baby felines after I moved out of my parents house before tragedy happened!!

    I’m still around not by choice around negative people who are 😳🤔😡 who trigger at least this week and before 5 days/nights of Epileptic Seizures 🤕. One when I phoned emergency and paramedics never showed up after 6-7 hours of waiting!!
    The next day I had another Epileptic seizure, ended unconscious then Fire and paramedics arrived where I was. The doctor didn’t do anything but wanted to release me until I started speaking up and got some Diagnostics done.
    The damn doctor couldn’t even find the Staples that were put in my head over a month ago, I asked to have them taken out!!
    “There’s so much blood in your hair!” Really?!
    I smacked my head on the floor, herr doktor!!!

    When is a patient who is brought to the hospital for Epileptic treatment and possible wound care less important than a person who walks into the emergency creates such a scene that it’s security situation and me being in the situation by brought by ambulance have to have my bed moved so I am save… Yet I have an Epileptic Seizure because of that person creating the scene for security situation but ALL eyes are on the person who later gets not removed from the hospital for the scene they created but a bed in a room, and was taken so seriously but me My bed was outside by the nurses desk AGAIN!!

    Why am I treated as a lesser degree from that person who had 6 security guards on top of them?!
    After they walked into the Emergency area!!

    On top of that where are the apologies from the makers of Anti-Epileptic medication for forgetting about the people who live with Epilepsy did they not learn from the past to learn for the present and the future?!

    I’m sure there are more people living with Epilepsy who are tired of “Are you Diabetic?!”
    With all the damn commercials with new medications and “tools” to use!!

    Like

    Comment by Tabitha — December 17, 2021 @ 10:29 PM

  9. Epilepsy is NOT mental health!!!!! Epilepsy is Neurological

    Read!! Ever hear of St. Valentine?!

    Liked by 1 person

    Comment by Tabitha — December 17, 2021 @ 10:34 PM

    • I agree with Tabatha that epilepsy is not a mental health condition in itself. However, understandably many people with epilepsy suffer from depression and or anxiety as a result of having epilepsy or as a side effect of their medication. See below

      https://www.epilepsy.com/article/2016/11/epilepsy-and-psychological-disorders

      I might add that many people without epilepsy also suffer from depression and anxiety.

      I have yet to meet anybody who is happy or delighted though with having epilepsy, have you?

      Liked by 1 person

      Comment by Michael H — December 17, 2021 @ 11:26 PM

  10. It is a small world Phyllis. I came across those exact percentages a few days ago on what appears to be a 12 year old posting on Web MD. You were the author! I wonder how much is a result of taking an AED as opposed to the underlying condition.

    A recent study showed that well over 50% of Covid infection survivors suffer from depression. I wouldn’t be surprised if your quoted figure of 80% is actually now low for patients with epilepsy during the Covid era.

    I still find that mindfulness diet and cycling defeats depression but I havn’t found a total cure for anxiety, although not listening to the news does help!

    Liked by 1 person

    Comment by Michael H — December 18, 2021 @ 9:27 AM

    • Absolutely. Not listening to the news can help with anxiety. Personally, though, it’s not healthy for me to stay removed from the news either. For so many of us, our epilepsy has made it “challenging” to stay connected. As such being bombarded with the news via the World Wide Web helps me stay connected, though not always in ways of healthiest moderation. So that moderation filter falls to me.
      As Phylis has encouraged me to do – “Grow into your own skin.”

      Oh, and millions of people watched on Thursday Night Football that Los Angeles Charger, Donald Parham, Jr. caught a pass, slammed to the turf, and had a concussion. One of the Announcers made light of it when Parham’s arms began to shake, suggesting that he was cold.

      Liked by 1 person

      Comment by George Choyce — December 18, 2021 @ 4:35 PM

  11. I agree with the onset of Covid causing depression.

    You don’t have to have epilepsy to be anxious and frightened.

    This article might interest you:

    Some Stress and Anxiety Solutions… https://epilepsytalk.com/2021/03/08/some-stress-and-anxiety-solutions/

    Like

    Comment by Phylis Feiner Johnson — December 18, 2021 @ 9:49 AM

  12. Some live in a similar situation, while others unfortunately do not. Some are in a relationship with someone they sleep next to, while some sleep in separate beds. There can be numerous explanations for these scenarios.

    “What is your inspiration?” we were asked. Allow me to tie together sleeping scenarios with inspiration to make it a personal, true story.

    Let me continue. A friend gave me his meaning of marriage – not so much as going to bed together at night as it is waking up together in the morning. While I liked it, I didn’t have epilepsy then. (Wasn’t life much different then if your epilepsy was diagnosed later?)

    Once I was finally diagnosed with epilepsy, it was my wife who stayed with me through each nocturnal seizure – some even threw me out of bed – and woke up in the morning with me. “What is your inspiration?”

    She is. For instance, a couple of nights ago, I had “a rough night.” As I titrate onto a new med, it is always “rough.” (That is the PG-13 description.) Nevertheless, she stays literally right next to me as the tonic-clonic seizures take control. With as difficult as those particular seizures can look (I’ve seen the videos), she stays.

    “What is your inspiration?” It is the people who literally stay around us, no matter what form, and continue to stay when others are so quick to leave us on our epilepsy journey. On the other hand, there is more than just one who was “going to get back to me.” Do you know how many cups of coffee I’m still waiting on?

    Liked by 1 person

    Comment by George Choyce — December 19, 2021 @ 4:59 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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