Path 2 flowersToday’s post isn’t about France. It’s about something that doesn’t know borders or nationalities. And the photos? I chose paths, a little wild, hard to negotiate, unclear where they lead, though hopefully to a better place.

March 26 is Purple Day, an international day for epilepsy awareness. One in 26 people will have epilepsy, and most of the time the cause is unknown.

My mom died of epilepsy. We don’t know exactly when it might have started, but probably, as for 33% of seniors who develop epilepsy, came after a mini-stroke or strokes. When she started having seizures, we didn’t even know that’s what it was, so it took a while before she got on anti-seizure medication. Even then, she went to a neurologist who couldn’t say for sure that she was having seizures. She had no memory of seizures. She didn’t have dementia, either; she avidly surfed the Internet (she even said it that way) to do genealogy research.

arch and path

She even had a seizure when I was right next to her, and I didn’t know it. The day after my dad’s funeral, I slept by my mom, spooning and giving her the cuddles I’d withheld in my quest for independence. Children are so hard to their parents. It wasn’t until I became a parent that I understood that parents’ babies will be their babies no matter how old they become.

In the finality of the funeral, she must have felt so alone and adrift. So I held my mom as if she were my baby. I eventually rolled over to sleep on my back and when I awoke in the morning, she was snoring away, so I let her sleep. But when a few hours later she was still sawing logs and we needed to go, I wasn’t able to rouse her.

Path 3 woodsEven then, it seemed like a seizure, but it wasn’t for sure. There’s no blood test or scan that can say definitively. The intensive care doctor said the only way to be sure was to see it happen. Indeed, my mom had another seizure in the ICU, and the doctor was there to film it. It lasted 13 minutes and still haunts me; I saw her have others, too. There’s nothing you can do during a seizure. The doctor told me not to even touch my mom during the seizure.

Lest this all sound misleading, I was barely around for my parents, living as I do across the Atlantic. My siblings, however, were devoted to them and checked on them nonstop. The real heroes.

Path 4 treesIronically, two years earlier, during a trip home to see my parents, who were still fairly independent and living in their house, I was listening to NPR on the car radio and heard a man talk about living with his wife’s epilepsy. It was so wrenching that I pulled into a parking lot to give it my full attention. The show is The Moth, available as a podcast, and the particular episode was titled “Me & Her & It,” by Peter Aguero.

For Purple Day, check out how you can make a difference on the Epilepsy Foundation’s site. And give your parents lots of cuddles while you can.

Path 1

 

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28 thoughts on “Purple Day

  1. What a touching story and told so sweetly… as both a child and a parent. Yes, they are always our babies. My Mother died of dementia and it was a long, slow process. But there were tests to take and a real diagnosis (of which she was totally ignorant and/or thought we were all lying.) You just never, ever know where life will take us, do we? We just have one daughter and sometimes I do worry that she is IT to take are of us. But who knows…

    Liked by 1 person

  2. What a beautiful story and a wonderful reminder to love and hug, and cuddle your parents and children. I have no children and my husband is older than me so I hope that when its my time at least one of my siblings is near to see me off to the next life. My niece has epilepsy and as you said sometimes you can be sitting there and not even know that she is having a seizure, other times they are very bad and scary. It is a huge burden for her and has affected every aspect of her life, in fact her longterm boyfriend broke up with her after he witnessed one of her bad seizures.

    Thanks for sharing and creating a little more awareness.

    Liked by 1 person

  3. Such a sad story, but a warning too. My nephew, who is grown now, has a daughter with intractable seizures and she has suffered brain damage from them, so we are suddenly aware of epilepsy in a way that we haven’t before. She has been nearly a year without a seizure and is making great strides. Thanks for shining a light on this common disease and the reminder to cherish our parents while we can.

    Liked by 1 person

  4. You tell this with such intense delicacy. Thank you for sharing your heartbreak. Hard to write, I am sure, your post will certainly awaken many. And yes, I will. Cuddle my mum. I promise.

    Liked by 1 person

      1. So true and yes, of course I will. I have four daughters and I know it that way round so why so dense when it comes to one’s own mother. I feel liberated, enlightened and rather chastened by your soul-searing post.

        Liked by 1 person

  5. You wrote this so well and I am sure it must have been so so hard, so first and foremost big hugs to you. Losing ones parents is awful at any age, I miss my mother so terribly, I wish she could watch her grandchildren growing up.

    Liked by 1 person

  6. This was so moving. I think as a parent and a child, many of us can relate to your story. I also didn’t realize that seizures could be like this, and I’m grateful that you shared your experience. I’m sorry that you had to go through such an experience.

    Liked by 1 person

  7. Thank you for sharing your story and urging us to educate ourselves about seizures, particularly in the elderly (a group I am about to join). I am glad that you had, and took, the opportunity to cuddle your mother after your father’s funeral.

    Liked by 1 person

  8. A real eye opener — I had no idea that epilepsy was so common in the elderly. Thanks for sharing your mother’s story and let’s hope that Purple Day makes a needed difference in funding research.

    Liked by 1 person

  9. Such an intensely personal and vulnerable post. Thank you so much for sharing. I was undone by your last line, we can be so tough on our parents, and they put up with it with so much love and understanding. You remind us of that so clearly and that we need to show our love back.

    Liked by 1 person

    1. It is so hard. We spend years, especially between our teens and early adulthood, trying to establish ourselves independently from our parents. And then, time goes by and it’s not us being vulnerable but them. But by then the whole language of love, the hugs and kisses and physical displays of affection are long gone from our vocabulary.

      Like

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