How do you stay positive?

I read this and was so touched by what you shared.

@dannoyes
There is no doubt that living with epilepsy presents many challenges, and it can be especially tough for those who struggle to accept and adapt to their new reality. I understand this deeply, as my own battle with uncontrollable epilepsy lasted for 45 long years. In the beginning, I found myself overwhelmed with anger and negativity, largely due to the lack of hope I received from doctors. Many visits, particularly to Stanford University in California, felt heavy with a sense of doom and gloom.

During a time when I thought daily seizures were going to define my life, I made a conscious decision to take some positive steps. I began swimming at the YMCA, which helped me regain a sense of control. Gradually, I got involved in volunteer work at the YMCA, and eventually took on responsibilities like managing payroll. I also volunteered at the police department, hospital, and homeless shelter. These experiences have filled my life with purpose, helping to boost my self-esteem and confidence.

In my journey, I have also focused on fighting the stigma surrounding epilepsy. I believe in the importance of dispelling myths and educating others about our experiences. Humor has played a vital role for me, as I often say, "May as well laugh than cry!"

I’ve been fortunate to have a strong support system. My parents and family were pillars of strength when they were with me, and my friends continue to uplift me with their positivity. I truly believe that surrounding ourselves with encouraging individuals helps foster a positive mindset.

Acceptance of one’s disability is incredibly important. While there are certainly limitations, embracing those realities allows us to learn how to navigate them. Engaging in social activities has also been beneficial for me; it helps to connect with others and find joy in shared experiences.

Currently, I’m fighting to regain my driver’s license, a challenge I’ve never fought before. I’m hopeful that my attorney will help resolve this matter, but if the outcome isn’t what I’m hoping for, I might need to lean on all of you for a boost back onto the positive path! After all, a police officer claims that a seizure caused my accident, which I firmly know to be untrue. But I’m determined to keep moving forward, no matter the obstacles.
Take care,
Jake

Jake - Thank you so much for your honesty and insights. So powerful! Do you find that sometimes when we laugh on the outside it can help dry the tears on the inside? Despite spending three weeks in Mayo Clinic's Pain Rehabilitation Center program specifically designed to help me accept my new reality with epilepsy, I still find myself struggling with acceptance. There are days when I catch myself desperately trying to return to the life I had before my diagnosis, even though I know that's no longer possible.

@dannoyes
“Do you find that sometimes when we laugh on the outside it can help dry the tears on the inside?”
I never thought of it like tha. But I honestly don't know. Perhaps it does with some people. When I was 15 years old, I had status epilepticus and ended up in an induced coma for eight months. I had lost my memory. The first memory I have is 3-14-71, the day my dad was paralyzed from the neck down. I have no memories before that. The worst part of my epilepsy is losing my ability to play the piano. I Was asked to leave school because of seizures during my sophomore year. Earlier I had been told I would be playing the piano during chapel every morning in my junior year. My inability to play the piano is a very emotional one still today 59 years later. I would sit and dust the piano and would start to cry. I cope better with it now, but it's still upsetting every time I hear someone play the piano. My friend plays the piano when we get together every other Tuesday to sing. But I don't allow those feelings to win. At least not now.
I don't know if that answered your question and I'm sorry I went on and on, but I was trying to make a point, but I have a feeling my point might've gotten lost in my ramblings.
Jake

I think that when you have accepted your limitations and the frustrations you appreciate
laughter more. I certainly don't believe laughter erases the hurt and pain

@dannoyes
What kind of work did you do that you're unable to do because of your epilepsy. I assume you're seizures aren't controlled. Have you had epilepsy long?
Take care,
Jake

my seizures manifested themselves about six years ago, but they didn’t become clinically significant until around three years ago. I used to run a digital marketing consultancy for around 25 years. It was heartbreaking to leave that behind. Three years ago, I was overdosed by my neurologist accidentally when he was supposed to have prescribe me 20 mg of an anti-seizure medication but instead he gave me 200 mg. I had a fall which resulted in a traumatic brain injury that left me in the hospital for over two months, at one point I passed away, but fortunately I was able to come back. Regretfully, I had another traumatic brain injury, six months later, which led to a brain, bleed, and another month in the hospital. All of this happened because of that one medical mishap. While I had great clients they were not able to wait that long for my recovery and my team had a difficult time proceeding without me. While I wish I could’ve started over it wasn’t practically feasible. fortunately, as a result of the clinical issue I was able to have my neurological case reviewed by the Mayo Clinic team who is delving deep in to my care. I am so grateful for this group and my only regret is not finding it sooner.

I rarely refer to a seizure as a type; it's not a partial complex, tonic-clonic, etc That names the seizure and gives it an identity. No name means no identity. Nothing exists without an identity and therefore, it can't be an enemy. You're right, it sounds crazy and makes no sense. It doesn't matter if it makes sense, what matters is it helps me stay positive. Find what makes you positive, don't focus on its' logic, focus on what it does.

Everyone has the option to see how seizures control our lives or how we control our seizures. I look for how I control my seizures.

I was walking my dog and had an aura that typically signals a very bad seizure, the type that required hospitalization. My focus became getting my dog home before the seizure hit. I had a minor seizure when I got home. There are two ways to look at it, the seizure stopped me from enjoying my walk or focusing on my dog aborted the seizure. I chose to see the enjoyment of focusing on my dog instead of my fear of seizure.

Would I have had a minor seizure without focusing on my dog or did I abort a seizure by focusing on my dog? I chose to believe I took control and aborted the seizure.

Flashing lighta are a big trigger for me. I avoid flashing lights by looking away, covering my eyes or leaving the area. Flashing lights didn't keep me from enjoying the concert, movie, fireworks, etc that was causing the flashing lights. I controlled my seizures by avoiding those lights.

It's always a win for me, even when there's no logic to it. I have my bad days, get really depressed, afraid to leave my house and don't want to be around people. I can't let depression define me any more than allowing seizures to define me.

Hi @dannoyes and everyone else here in this discussion.
First, thank you for your insightful guidance on keeping our cups half full instead of half empty! So much valuable information has already been shared that I don't have much to add at this moment.
However, I'd like to highlight a simple yet transformative daily practice my yoga teacher suggested during a particularly challenging period in my epilepsy treatment: reflecting on the good things (called "santoshas" in yoga) that happened each day before going to sleep. Initially, I could only identify one positive thing—not having had a seizure that day. But gradually, through consistent practice, I began noticing other meaningful moments I had previously overlooked. My cup, which had felt empty, began filling up.
I'm also sharing a link to a discussion I started in 2023 titled "What are your Positive Experiences and Gains through Epilepsy?" for anyone interested in exploring this perspective further:
https://connect.mayoclinic.org/discussion/positive-experiences-through-epilepsy/
Wishing you all a wonderful evening!
Chris
PS: My username "Santosha" actually comes from this practice, which has been incredibly helpful, especially during the most challenging treatment periods.

Thank you so much for your beautiful insights @santosha

@dannoyes
My pleasure, Dan!
Have a nice day 🙂
Chris (@santosha)