Any phrase, idea that helped you navigate life with epilepsy?

@jakedduck1
Hi Jake!
Thank you for sharing something so personal: the pilot dream, leaving school, and above all, the loss of your ability to dedicate yourself to music. Those were real and profound losses. I well imagine the anger and resentment you went through; they make complete sense.
What your story so beautifully shows is that outer support can only carry us as far as we are ready to let it in — and that the inner journey of truly accepting "it is what it is" is still ours to walk.
What helped you finally turn that corner and carry those words from your head into your heart?
Chris

@dannoyes
Hi Dan!
Thank you for sharing this, especially on a day that had asked so much of you.
One of the most memorable insights I've recently heard came from Dr. James Jackson, a neuropsychologist invited to a recent episode of Seizing Life from Cure Epilepsy: that even when our symptoms don't change, we can change our relationship with them — treating epilepsy like an unwanted house guest that we learn to tolerate over time. And that's exactly what you showed us that day: being flexible with your expectations and showing yourself grace.
"My day is not over. I just need to realign." Those words are a beautiful example of changing our relationship with epilepsy rather than fighting against it.
Thank you for this contribution!
Chris

@louissc
Beautiful quote from Hemingway, Louis — thank you for sharing!
As Hemingway reminds us, what happens in all the days to come can depend on what we do today. And perhaps the most important thing we can do today is choose not to let the fear of having seizures take over. As Dr. Katherine Noe of Mayo Clinic Arizona has mentioned in a podcast, "Fear can be much more disabling than seizures themselves."
Chris

@santosha

Hi Chris,

I think I also learnt something from Michelle Obama during an interview at a late night show. There’s nothing wrong with fear, as fear helps protect us from being reckless and let what’s dangerous harm us. But when we keep allowing fear to overtake us from doing anything which we should be doing, that’s when it’s not right. I thought that’s pretty thought provoking.

Cheers,
Louis

Hi @ellierwin
Thank you for sharing this!
The way you expressed yourself in your post resonates with me — epilepsy is a part of us. But knowing that and truly making peace with it are two very different things — and the distance between them can be wider than we expect. Truly accepting this part of us is no small achievement and can be deeply liberating. In my own experience, it's one of the most powerful steps we can take in our epilepsy journey to find our way back to a life of joy.
That kind of acceptance, as simple as it sounds, can take time and inner work to arrive at — as it did for me. In my own journey, working with my neuropsychologist has been fundamental in helping me move toward that.
@ellierwin, would you mind sharing a little more about what has been helping you along the way in this respect?
And for all of us in this group — did that way of seeing it come naturally to you, or was it something you had to work on? What has helped you make peace with your epilepsy and truly accept this condition?
Chris

Hi @kb2014a
Thank you so much for rephrasing your post.
Emotional stress is a well-recognized seizure trigger and protecting ourselves from unnecessary and harmful stress isn't a luxury — it's part of managing our condition. Toxic relationships that bring that kind of distress certainly belong to that equation. And let's face it — toxic people are part of life, with or without epilepsy. Distancing yourself from those relationships, or ending them altogether, was the right thing to do.
I've done that myself with a few people. Rather than fighting to make them understand my condition and the changes it brought — which in itself only brings more stress — I chose to step back.
When you're well, everyone wants to be close to you. But as soon as you face difficulties, you discover which relationships are true and which were merely built on convenience. One of the bright sides of my epilepsy journey has been exactly that clarity: knowing who the people and friends I can truly count on are.
I'd love to hear from others in the group — has anyone here faced similar challenges? And if so, how did you come out of it?
Chris

So well put, @louissc ! Fear does serve a purpose — the problem arises when it becomes chronic and paralyzes us.
Last year, during the second semester, my complex partial seizures came back — sometimes once or even twice a week. With them came a familiar fear: what if I had a seizure alone on the street? That fear pushed me to think of ways to feel more secure, without stepping back from my life.
First, whenever I walked to Pilates or Tennis, I'd let my husband know when I left home and send him a quick message once I arrived. I also mentally mapped safe stops along my routes — shops, restaurants, supermarkets — where I could rest, breathe, and show my medical bracelet if needed. Once that strategy proved it worked, my fear eased and I gradually extended it to other activities — meeting friends, going to appointments on my own, and more.
As @marianne72 so aptly put it, 'Life is risky no matter what or where!' Living in a large, bustling city like São Paulo has taught me that managing risk is simply part of daily life — and that the same mindset applies to living well with epilepsy.
Has anyone else in our group faced this kind of fear? What strategies have helped you stay engaged with life rather than withdrawing from it?
Chris

Hi all,
Last week I watched the new Seizing Life episode from CURE Epilepsy, where neuropsychologist Dr. James Jackson spoke about the emotional toll of living with epilepsy. Several of his insights felt directly relevant to what we've been sharing in this thread.
. On avoidance and the "before and after" trap — Dr. Jackson notes that one of the clearest signs of trauma from a difficult medical experience is profound avoidance, often expressed as constantly comparing life before and after diagnosis, particularly for those who developed epilepsy relatively later in life. His antidote: recognizing that there isn't a pre-epilepsy you and a post-epilepsy you — there's simply you.
. On changing our relationship with symptoms — even when symptoms don't improve, he argues, we can change how we relate to them. Drawing on ACT (Acceptance and Commitment Therapy), he encourages making room for uncertainty and for the possibility that unpleasant things may happen, rather than fighting that reality.
. On not waiting to live — perhaps his most powerful point: "I'm not going to wait for this to be fixed to live a meaningful life. I'm going to try to find a way to live a meaningful life right now."
. On acceptance rather than resistance — he suggests thinking of epilepsy as an unwanted house guest: someone you didn't invite, aren't happy to have around, but can learn to tolerate over time. The more we fight it internally, he says, the more activated it becomes — and the more we learn to accommodate it, the more freedom we'll gain.
I found this episode deeply resonant with my epilepsy journey. Much of what Dr. Jackson describes mirrors the work I've been doing with my own neuropsychologist since the beginning of my journey in 2019 — and hearing it articulated so clearly was both moving and validating, showing me how beneficial and fundamental the inner work has been along the way of living well with this unwanted companion, as Dr. Jackson so aptly puts it.
Have any of these insights struck a chord with you?
You can watch the full episode here:
Epilepsy and Medical Trauma: Recognizing, Accepting, and Healing
Seizing Life – Episode #162 – CURE Epilepsy
https://www.cureepilepsy.org/seizing-life/epilepsy-and-medical-trauma-recognizing-accepting-and-healing/
Chris

I have been seizure free for nearly a year after I was hospitalized for four days. Two reflections: take your meds, and stay off alcohol.

Congratulations @frankv on nearly a year seizure-free — that's wonderful news! Thank you for sharing those reflections — "take your meds" and "stay off alcohol" are such simple but powerful lessons.
Was there anything else, such as a way of seeing things, that's stayed with you and helped you through your epilepsy journey? I'd love to add it to the collection of wisdom we're gathering here, if something comes to mind.
Thank you!
Chris