Positive Experiences through Epilepsy

@santosha
My memory and thinking issues make it difficult to respond to this post. I'm having trouble expressing my thoughts. Not sure why. I don’t have a lot of memories to draw upon because most of my memories are gone except bits and pieces told to me by others.
I think the most positive thing that happened was my acceptance and appreciation of my new life was going to be like. I had acceptance struggles like many, if not most. I learned to be more grateful and how to find the positive in something negative. I don’t know what my coping skills were before my diagnosis but I believe had I not had epilepsy and gone through all that I did my coping skills might be less than they are today.
Seizures and all the baggage that comes with them taught me to not be ashamed or embarrassed about things I have no control over. As @artist01 says, “it is what it is”but even though my life changed significantly, most of which was negative .
I have taken so many things for granted throughout my life and epilepsy has made me appreciate them even more.
I believe that I am more patient and compassionate now.
I don't take things for granted like I most likely did or at least I try my best not to.
Adversity taught me positivity.
.Jake

@jakedduck1
Hi Jake, Good Evening
Very beautiful what you have just shared here in our group with us. Thank you so much for your contribution and post!
I have loved your sentence "adversity taught me positivity". This is very true!!!! Reading your lines, I very much now remember the documentary Mission Joy: Finding Happiness in Troubled Times with Dalai Lama and Desmond Tutu (https://missionjoy.org/) I have watched recently.
I definitely agree that acceptance of our epilepsy condition is something that struggles many, if not most, as you have well-written. Today, I see that accepting my epilepsy and the new life with it, was the starting point to regaining joy in life.
I wish you and all a very nice evening.
Santosha

Dear All,
Just sharing a quote from the documentary Mission Joy: Finding Happiness in Troubled Times with Dalai Lama and Desmond Tutu.
Dalai Lama has said that he personally prefers a refugee life. “It is more useful, more opportunity to learn more experience”. Cognitive retraining is a powerful technique to change your mindset, changing the way of seeing the world, instead of resentment and bitterness. Retraining can liberate us from that resentment and free us. If you look from one angle you feel “oh how bad, oh how sad”. But if you look from another angle about that same tragedy, that same event “ah that give me some new opportunity to learn”.
Both Dalai Lama and Desmond Tutu have shared their positive experiences in difficult times, Dalai Lama as a refugee and Desmond Tutu as a great battler during the Apartheid times in South Africa. As Doug Abrams who interviewed both in this documentary said "Your experiences and spiritual practice has not made you somber and serious. It has made you more joyful!”
This is a documentary very worth watching it. It is on Netflix and certainly on other media as well. It has brought many smiles to my face, the first and the second time. For those interested, I can share other quotes I wrote down on a document.
Have all a very joyful evening!
Santosha

Good morning. I was just able to read these posts from Santosha and Jake. I have not gone through as tough a time with my seizures as both of you. But after about a year of being diagnosed, I am not yet able to see the positivity of the situation. I was very depressed before being diagnosed (over a loved one) and so this just added to the pain. That being said, your comments are so appreciated as they give me something I am struggling to find: hope. It seems at this late stage of my life fear has overtaken me. Thank you for such encouraging words.

@baa, Good Morning!
Thank you very much for your comment. I am happy to know that my and Jake's posts have given you some hope.
I can very well understand your words and feelings. I also could not see any positivity in my epilepsy, during the tough times of my treatment, when I suffered much with all side-effects of medications being prescribed and my seizures. At that time, I was just emotions and very depressed as well.
The first changing point in this journey was accepting my epilepsy and learning to live with it. With that acceptance, I could find the energy to look for new doctors and alternative treatments. The support my neuropsychologist gave me at that time was fundamental, I do not believe I would have been able to win this battle just by myself. By getting better day by day and reducing my seizures (as I mentioned, I still have them, twice or three times a month, my seizures also became softer), I started to look at my epilepsy experience in another way.
When I got diagnosed with Temporal Lobe Epilepsy in February 2019 and started my treatment with AEDs, it seemed all too much to me. Many times I have prayed, saying to God that I did not have the strength to face such a challenge and even asked God to take me back home. But nowadays, I see I was wrong. We do not get challenges bigger than the ones we can face. Such challenges as the ones we face through our epilepsy are certainly not put on weak shoulders.
Do watch this documentary with Dalai Lama and Desmond Tutu, it will certainly bring good feelings and might give you some strength at this challenging moment you are facing! As Dalai Lama has said in this documentary, our spiritual practices can prevent us from falling into negative emotions. Traditional Yoga and meditation were also very important to me in this process of getting better, helping me to rescue my inner strength.
My best wishes to you, that you can find this inner strength within you and get you smiling again!
Santosha

Thank you for this my dear! Your words mean much to me and sharing your journey does give me hope. There are no neuropsychologists in my area and I am not able to drive further but I will try to find some alternative. I have seen a book with Desmond Tutu and the Dalai Lama which may be based on the documentary. I will try to find since I do not have a laptop to view. Thank you again for sharing your experiences. This is so helpful and encouraging💕

@baa
Your comment “It seems at this late stage of my life fear has overtaken me.”
Although it's still relatively early since your diagnosis ACCEPTANCE is essential. The reality is you have it and there is no cure and unpredictable. But we need to concentrate on the positive, Admittedly, that's not easy. I was angry and resentful and probably felt sorry for myself and had a nervous breakdown. I don’t remember for sure, but I don’t remember for sure how long it took to except my new normal, probably 3 to 4 years. Acceptance and positivity is essential in your treatment, however it doesn’t always happen overnight. Don't concentrate on when or where a seizure might occur but that you will gain better control of the seizures and like mine maybe they will stop (if not yet controlled). That of course doesn't mean you'll never have a breakthrough seizure/s.
Stress, worry & fear can increase the possibility of breakthrough seizures in some people.
It’s difficult to be positive sometimes, people telling you, that you belong in the circus, equating you with the devil, people abandoning you for something they refuse to understand. People you knew who would always support you and never leave your side treat you like a stranger. divorce, being considered inferior or defective by some. I think I remember a little boy sitting next to me talking quietly, while I was having a seizure at the mall. Eventually, his mother showed up and yanked him away from me, saying get away from her wife, be catching or words to that effect. I think I remember a little boy sitting next to me talking quietly, while I was having a seizure at the mall. Eventually, his mother showed up and yanked him away from me, saying get away it might be catching or words to that effect. The list is endless. The hurt is often never forgotten. To me these things are worse than the seizures.
No, finding posititivity in the negative is not always easy but never give up, it's well worth the effort.
Do everything possible to control the reality of your Epilepsy and not let the your Epilepsy control you or your life.
Stay strong,
Jake

Thank you Jake. When I read these comments from folks like you and Santosha, I do (and should) feel foolish for complaining. I certainly have not experienced the level of seizures you have had. Since mine are nocturnal I have not experienced the awful reaction you describe from others. I cannot imagine. It’s the fear I have to conquer each night before I go to sleep. Of not waking up. I’ve always had to be in “control”. Single parent, in control of my family, in control of the facilities I managed, always being in control for others. Now I am not in control. I take my meds and see my doctor, but will never forget going to bed as usual and waking up the next day in the hospital. I thought I had died because when I woke up both children were there! Why am I so afraid? Is that normal? Is my faith weaker than I thought? I’m a mess! I so value reading about others’ journey. You and Santosha are like lifelines to me as I move through this.

Hi @baa
Have you perhaps considered having online sessions with a neuropsychologist? This way, your area would not limit you. I started with my neuropsychologist with sessions in person, but to continue in Covid time, my sessions became all digital. It has worked so well that I continue with online sessions with her. We use Google Meet, free and it works very well. Think of that! You said you do not have a laptop or computer. Perhaps it is worth the investment so as to have the support of a good neuropsychologist during those tough times.
Yes, Dalai Lama and Desmond Tutu have also written a book. I have just ordered it 😊. It is called The Book of Joy: Lasting Happiness in a Changing World. The documentary I mentioned was based on this book. If you have Netflix or other media on your TV (ie Google Play), you can watch this documentary from your TV, it is even best than watching it from a laptop. I watched it on my TV from Netflix.
Do something you enjoy this weekend. Be gentle to yourself!
With much care
Santosha (means contentment in Sanskrit)

I very much agree with Jake’s opinion (@jakedduck1).
Acceptance is not something that happens overnight, I had to work on it. It took me 3 good years to change my attitude toward my epilepsy. But with WILL it is possible! For sure, the support of my neuropsychologist was fundamental to achieving it. As I mentioned I still have some seizures every month, but much milder than they were before. They do not bother me as they did before, I have learned to live with them.
For sure, fear (and other emotions) of having a seizure is a potential trigger to seizures. It was one of mines, leading me to seizures. During a certain time, I would not live home alone due to the fear of having a seizure alone without the support of a beloved one and of being ashamed of myself. I did also not stay well at home just by myself when my husband had a meeting outside. What happened? I created a cage for myself, leaving me depressed and limiting my husband’s activities. But with WILL and the support of my neuropsychologist I faced this fear, and today it does no longer control my life and I do not feel ashamed of having it in front of others anymore. I do most of the things on my own again, go to the supermarket, my Pilates, my Yoga, meet my friends for a coffee or lunch, etc. I do not drive anymore because I consider it to be a risk of injury for me and others. But nowadays we have UBER. Again, I have adapted to my new reality and learned to live peacefully with my epilepsy. Did I never have a seizure outside my home? Yes, it has happened on some occasions, at my Pilates session, at my yoga practice, together with a friend, in a mall and in other circumstances. To feel secure, I have also adopted certain measures when walking and circulating on my own. I was even considering having a seizure dog, but my apartment is too small for a Golden Retriever (keeping it in this limited space would not be something gentle with such a dog). I see today I do not need to have a seizure dog to feel secure again, though I would love to have one. But for that, I would need to move into a house with a garden.
It is possible to find positivity in negativity, do not give up!
Have all a lovely weekend with many blessings and quietude in your hearts and minds.
Santosha