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This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
I don’t write about our journey with epilepsy much but when I saw the opportunity to bring attention to the stigma of epilepsy I jumped at the chance to share our story. At the heart of the Live Happier philosophy is that life is full of ups and downs, joys and sorrows. Epilepsy has been an awesome illustrator of that concept and reminds me every day….the only thing I am in control of is my response to life.
I knew he had seizures…he had told me about them. But I still wasn’t prepared for it when he had a grand mal in front of me. It was 4am and I woke up to him convulsing and seizing next to me. In panic, but trying not to I turned him on his side and lovingly told him it would be ok. If you google what to do for with a seizure you will read (some very good information) about what to do when someone is having an active grand mal. We have all see the TV depictions of seizures and the misnomer of putting something in their mouths so they don’t swallow their tongues (DO NOT DO THIS) but what no one talks about is the after the grand mal period…the postical period. The period where he stops seizing and looks at me like I am going to chop him up into little pieces. He can’t talk and he can’t understand anything I am saying and no matter how much I say, “it will be ok,..just relax…” he looks at me with terror in his eyes. And then he tries to flee. After exhausting his muscles completely through the seizure and having no muscle strength left—his brain tells him he now would be a good time to run. So he tries to get up out of bed…he tries to flee…I try to hold him back…thus confirming in his brain that I am going to chop him up into a million pieces.
This dance of fleeing, fear, desperation and panic probably lasts for 10 minutes but for me, it feels like a lifetime. Eventually, he gives up; I get him back to bed and he sleeps it off…only to wake up a few hours later to repeat the process. His seizures usually come in 2s and 3s. And then there is the recovery…usually, he sleeps all day and most of the next and then it is almost like his brain goes through a reboot and for a week or two he is just ‘off’ forgetting words, misspeaking, tired, frustrated and angry. So yes, the seizure is more than the 3 minutes of the actual seizing…it is a roller coaster of emotions, as well as a physical nightmare. Fortunately, for my nearest and dearest these grand mals only happen 3-4 times a year but we never know when they are going to happen, we never know how many or how long it will take him to recover. And then he has what I call ‘mini seizures’ we have given up on counting these…but he has several a day each one causing bits of brain damage.
My husband has had seizures since he was 8 years old; and has heard all kinds of slams, frustrating remarks and stigma…which I am sure you will read about in the other posts on this Blog Tour. But I wanted to write about the stigma of having a partner with epilepsy. My story, as his wife and our journey together.
For most of his adult life, he worked. And when we first met he was working. When he wasn’t working he was sleeping. Which left very little time for us. Right before we got engaged,his seizures went crazy after years of stress, and exhaustion it just wasn’t worth it to be working anymore. Fortunately, we had ways to make it work so he didn’t have to work. So we decided it would be best for him to quit his job and focus on his health. Do we have the same lifestyle as many of our friends? No. Is it worth it? Yes. The number one question you hear at any gathering or social event is, “So what to you do?” or “So what does your husband do?” I have come to hate this question. Because when I say my husband stays at home because he has epilepsy people stare at me blankly or say “Wow, I thought most people grew out of that.” or “Oh, my dog has seizures!”
I know people don’t know what to say. I know our way of life is highly unusual. I am the primary bread winner and my husband is the ‘cabana boy’ as we lovingly refer to him..taking care of the house, and being a wonderfully supportive partner to me. But the stigma we face is asked in a question I get at least once a week, “How do you deal with that?” people ask. “How do you have a husband who does nothing…doesn’t help…doesn’t contribute…doesn’t work?” I HATE that question. Because to me, the answer is there is nothing to deal with. I have an amazing partner, friend, and husband…no he doesn’t bring in money. But there is so much more to life than financial support.
He is the man who listens to my stresses, supports my business, loves me unconditionally and puts his health as a priority, so hopefully we will have a long, happy life together. Financial support pales in comparison to that. I know I can have a husband who brings in money through work….and I know that husband is tired, cranky, disengaged and at a higher risk of seizures. I know I can have a husband who is rested, relaxed, and present to our life and who still has seizures…I would pick option B anytime.
Stigma by definition is a mark of disgrace, and yes, I see the pity in the eyes of those we talk about Doug’s epilepsy with, I see it in the quick change of subject or the pithy remarks, and I understand because there is fear there. Stigma comes from a place of misunderstanding and fear. Epilepsy is scary…I wish we didn’t have to deal with it, and I don’t wish it on anyone. AND I know epilepsy has made our marriage stronger. It has helped us get crystal clear on what really matters. It has helped us live intentionally each and every day. Bottom line…it has helped us live happier.
One thing that helps prevent stigma is the use of empathy. We are so fortunate to have friends and family who offer us love, support, and connection…the definition of empathy. Brené Brown has an amazing, humorous video on empathy…check it out here.
Be sure to check out http://www.epilepsy-theunwelcomevisitor.com/ tomorrow for more on Epilepsy Stigma.
And for more information visit http://livingwellwithepilepsy.com/