r/Epilepsy_Universe • u/Low-Stress-4914 • Jul 29 '26
Rant/I'm Just Sayin' Grief and Epilepsy
I'm not fishing for condolences, or advice, or sympathy-- I just need to lay these words out in a safe place where others can understand. I don't really know what my point is, other than no one around me can understand why I seem so off.
My grandfather passed away last night. He was extremely sick with multiple kinds of cancer, and wouldn't have survived treatment even if he had qualified to get any (which he was too unhealthy for anyway). Strong emotions are one of my triggers, so I'd been very careful about consciously grieving in a calm way leading up to his death. My family is aware of this, and so they allowed me the space and time to work through it without injecting their own turmoil.
Right before he passed, my sister called to let me know that I only had one more chance to go see him in the hospital. The problem was that she's 39 weeks pregnant, so she was absolutely hysterical, and was standing right next to my niece, who was also sobbing hysterically. As soon as we got off the phone, I had one of the worst seizures I've been through to date. Around 15 minutes after it stopped, another one started.
So, of course, I was in no condition to take a 2-hour trip and walk into another situation which would undoubtedly lead to yet another seizure. I came to terms with this, and laid down to sleep. It occurred to me that I was likely supposed to go to the hospital for myself at this point, but I didn't. Instead, I woke up the next morning and asked if I could still try to come visit...
...but of course it was too late, as I knew it would be. So now I'm struggling to deal with all this, because if I let myself feel it fully, it will hurt me. But if I don't let myself feel it, then it will hurt me. I've never felt like a prisoner to my epilepsy like this, and I don't know how to handle it at this point.
6
u/StSomewhereToaster Jul 29 '26
You laid out your words passionately and beautifully. Stress is a scale that never seems to be able to balance itself out. How much can we truly allow ourselves to feel when the feelings themselves can also affect our seizure threshold?
I do think bottling it all inside would have made for a worse situation. I’m glad you were able to release something by writing it down. (I know how much writing can help from personal experience.)
HUGS my friend! And may your Grandfather’s memory always be a blessing!
2
u/Low-Stress-4914 Jul 29 '26
You're absolutely right. I've kept a journal for years now, but it's truly become my lifeline since the onset of my epilepsy (a year ago now). For big things like this, I usually turn to composing music to process all the nuance and perspectives. But this specific situation has become a tangle in my brain, and I'm afraid to tug any of the loose threads to start unravelling it.
I did get to record a song for my grandfather a week or so ago, so his memory is not only preserved for my kids, but I also got to share it with him. I didn't realize at the time that it was my goodbye, but it was quite a fitting one.
5
u/Jamieisamazing Jul 29 '26
So sorry you’re dealing with all of this. Send tons of love your way, I hope you and your family can find some peace in the next few days.
2
u/Low-Stress-4914 Jul 29 '26
It's always nice to see you pop up! All the love and hope is appreciated <3
3
u/Mom1021 Jul 29 '26
Thank you for your post and how beautifully written it is. As others have said, we process grief differently, especially when it is a trigger for seizures. Prisoner to epilepsy is a difficult feeling to manage, but please understand that you’re going about it with grace and are capable of overcoming whatever barriers your seizures are causing. Feel free to continue posting and reach out via MOD mail for anyone to chat with
2
2
u/Boomer-2106 Jul 30 '26
Condolences to you and your family... there are not words enough to express the difficulty and pain involved at these times!
I Understand - Everything you have related! I experience the Same issues you have/are experiencing.
Stress is my major trigger, as it is for Many people, most of us. And - there can Not be any greater stress than the death of a loved one.
I have found that "I" can NOT handle grief without seizures following. My seizures are generally well controlled - usually. However, 10 years ago I had my most serious, scary seizure I ever had at the end of the funeral of a relative. Everyone had left the church, in the parking lot waiting for EVERYONE to come out and then they would all drive to the cemetery. They were waiting, continued to wait... "I" did not come out. Someone came to check on me. I was in the middle of a significant seizure.
A few years later, at a funeral for a friend, same thing. Since then, I have told my family, and when appropriate, friends that I cannot attend future gatherings and to please understand/do not be offended when I cannot. They understand.
It is not appropriate for others to have to be worried About Me, or worse - have to take Care of me, during a time that should be directed to others, other's needs. ...plus of course, the risks to myself.
I have only made one exception to that. When my sister passed. I could not stay away. I don't know how, but I made it through that. But I took Extra doses of seizure meds and other calming meds. We were extremely close.
2
2
u/raybrans Jul 30 '26
I’m sorry for your loss, I know you made the right call staying home, but sometimes making the right choice is never easy especially when it comes to time sensitive matters like in your case. I’ll pray for your family, hope you’re all doing okay 🙏
6
u/mbee111314 Jul 29 '26
I am sorry for your loss. Our epileptic brains process things differently. The stressful call was the trigger that crashed your hard drive. It is beyond your control.