You don't have to live stressed out and exhausted.
This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
I am so honored to be a part of the Epilepsy Blog Relay. What does epilepsy have to do with Living Happier you might be asking? Well, my husband has had active epilepsy since he was eight years old. It is a regular part of our lives and something we deal with on a daily basis. Living with epilepsy has taught me A LOT of lessons about Living Happier. One of the biggest is the difference between acceptance and struggle.
In addition to the grand mals, that he has a few times a year here a few of the other symptoms my husband experiences.
- Phase out seizures where his face goes slack, and he can’t talk lasting about 30 seconds…a couple times a day
- Misspeaking subbing in the wrong word
- Memory Loss
- Inability to drive..sold his car a few years ago as the ultimate defeat
- Depression due to medication side effects
- Rage due to medications side effects
- The choice not to work..working and stress cause more seizures and we are fortunate to be able to make that decision.
Epilepsy is a very real part of our lives.
When we married back in 2011, I went on a quest to ‘cure’ my husband of epilepsy. We were going to find the best doctors, get him on the best medications and do everything we could to kick epilepsy to the curb. I remember his mother, looking at me with love in her eyes and saying, “good luck with that.” She knew I had to take that journey the same as she did. I had to go through my journey of struggle fight and eventual acceptance of this condition.
And we tried, oh how we tried. I logged all his seizures; we tracked his meds, we found a wonderful doctor. My husband’s health became our #1 goal. He didn’t drink alcohol, ate right, slept a lot, he kept stress to a minimum, and we found a new miracle drug that seemed to cure him. And he had almost two years of seizure freedom, no phase-outs, no grand mals. He got his driver’s license; he was working part-time. We had kicked it. With a price, the miracle med had the nasty side effect of rage, depression and headaches. So yes, seizure were gone…but at what price?!?!
And then it came back.
Every time we thought we had beat it.
The seizures came back. (Now we had seizures AND nasty medicine side effects.)
But I kept believing.
I kept thinking we can beat this.
And then in Apri that familiar early morning wake up call came, and my husband had three grand mals in a row. Three seizures where his body and mind go away, and I don’t know if he will ever come back. They only last for a total of 7 minutes, but they lead to hours/days of hell. We went to his neurologist, and she tweaked his meds one more time. She smiled at us and told us to keep the faith that new meds are developed all the time. But I knew the statistics. I knew that with the number of meds my husband takes, with the number of seizures he has, he wasn’t going to ‘grow out of it’ and the chances of him finding a miracle drug with side effects he could handle was getting less and less.
That night my husband and I went to dinner, and I faced the truth. I mustered up all my courage and said. “What if this is it? What if it is always going to be you, epilepsy and me for the rest of our lives? I think I need to come to peace with that.” And my husband just nodded and said, “Yep, as hard as it is, I think it is time for both of us to accept that.” It was as if we both took a long exhale. Admitting the truth, that we were tired, road weary and suffering battle fatigue was life changing for us.
And from that day on a feeling of peace came upon our relationship. His health is still a top priority, but it isn’t a personal defeat when he has a phase out. Or when he doesn’t want to go out because he can’t speak correctly. There is a great understanding that epilepsy is a way of life for us.
One of the most powerful movies about this subject I have ever seen is the movie Love and Other Drugs. Where Anne Hathaway’s character has early onset Parkinson’s and her boyfriend played by Jake Gyllenhaal wants her to find the best doctors possible so she can find a cure for her disease (sound familiar?!?!). Finally after visiting yet one more specialist, Anne Hathaway ‘s character storms out and her boyfriend follows her saying,
“Don’t you want to get better?!?!?”
And she says, “Yes! DESPERATELY, and it’s not going to happen, alright. NEWS FLASH…there is no cure!!! But apparently, you need to know I’ll get better in order to love me”
“Parkinsons’ isn’t my life…I have Parkinsons’s. Why can’t I just live with Parkinsons instead of becoming a project.”
Over the past few months, we have been trying to do that. To recognize that epilepsy isn’t our life. My husband HAS epilepsy, and we live with epilepsy. But he isn’t a project that we need to struggle with constantly. He is a loving, kind, empathetic, compassionate human being who lives courageously with a debilitating medical condition. The truth is our lives won’t look like everyone else’s, and that is ok.
Our lives have become more rich and happier since making that subtle shift from struggling to acceptance. Acceptance doesn’t mean we aren’t diligent about his health, but it does mean we aren’t obsessing about the next seizure, the next miracle med, or the next cure. Rather, we are living our lives with epilepsy. My husband, me and epilepsy and all the messiness it brings with it.