Most people have struggled in their personal life at one time or another. During the years I was raising my children, I had three failed marriages, worked three part-time jobs, and it was hard to find time to write.
We came through the lean times as a tight-knit family. But I think of life as being like a river, because you never know what is around the bend. By the time my last chick left the nest, I had gained financial security, but a new difficulty arose.
Two of my children developed adult onset epilepsy, a complication which has made our comfortable life… interesting.
When you look at the statistics detailing the age of all patients at the time of their first seizure, the number of those whose first documented seizure occurs after reaching adulthood is far higher than those who experience it as children.
Yet little research has been done to document the experience of living with a seizure disorder as an adult.
They once lived their lives the way normal adults do. They used to be able to legally drive a car without endangering other people, to say nothing of themselves. They didn’t have to worry that a short flight of stairs could kill them or that cooking their breakfast could send them to a long stay in the burn unit.
There is anger, confusion. Why me? What did I do wrong? What can I change? There is even denial–it can’t be epilepsy; it’s never going to happen again.
The truth is, no one knows what causes most forms of epilepsy, and each patient responds to the medications differently. And every well-meaning auntie in the universe has sage advice to offer, despite not having any experience with it. “Try marijuana.” “Go on a Keto diet.” These are effective treatments for some people, but not for everyone, and not my son or daughter.
There is no miracle drug or diet out there at this time.
Epilepsy is not a poster-child kind of disease, so funding for research is limited. At this point, because the cause is rarely knowable, all the medical community can do is offer drugs to control the symptoms. Most times, seizure disorders are not operable, unless it is a tumor or some other obvious thing. When you look at the wide spectrum of patients with adult onset, you see those “easy-to-find with an MRI” causes are quite rare.
Many, like my son, are never quite able to get it under control, and it affects their jobs, their relationships, and their ability to live a fully independent life.
Others, like my daughter, go many years between seizures, and their lives are mostly unaffected by it. She has her own business, volunteers at her son’s school and is also the co-chairwoman of the PTA there.
Both of my children have suffered terrible injuries during seizure episodes. Both have spent time in the hospital, had to have surgeries to repair wounds incurred, and no one has ever been able to find the cause of their seizures.
Writing has been an escape that kept me sane when nothing was certain except my daughter and son were in terrible trouble, and the doctors didn’t know why and couldn’t cure it. The medical community wants to cure it, but the way this condition affects each sufferer is different, which frustrates the doctors as much as the patients.
For many people, after they have a large seizure event, there is a post-seizure stage where they suffer an altered state of consciousness. This can be dangerous if they are alone. They’re locked in a dream and make no sense when they speak. As they begin to come out of that stage, they’re unable to think clearly, can’t focus their attention or follow a conversation. This altered state is like sleepwalking and sleep-talking, which is why it’s dangerous. As they move out of this stage, they will also have problems with short term memory, and may have decreased verbal and interactive skills.
Fortunately, that is a temporary thing, lasting only one or two hour for some, but it can go one or two days for my son. After recovering from that stage, it still takes about two weeks for my son to get back to where he can think clearly enough to work on whatever project he is doing. He can’t be alone then, but between his wonderful girlfriend and I, we care for him until he can be on his own again.
This post-seizure state cost my son his long-time job (ten years) as a software developer at Amazon and made it difficult for him to find work elsewhere. Most employers can’t accommodate an employee who is randomly unable to work for two weeks, two or three times a year.
After a time of intense depression and searching for answers that don’t exist, my son decided to be proactive. He started his own company, doing what he loves. He is now writing his own software and apps and is his own boss so he can work around his situation.
We could allow this epilepsy thing to overshadow our every waking moment, but that would change nothing. Research, they say, is ongoing, but nothing has changed treatment-wise since my daughter’s first seizure at the age of twenty-eight—sixteen years ago. My children still sometimes have seizures, and we have learned to laugh and enjoy our life despite the occasional setback.
The hours spent in hospitals as my son or daughter recovered from injuries incurred during a seizure helped forge my writing. Life is what happens when we aren’t on that merry-go-round, and other than that, our lives are good.
Life is a journey, and you never know what lies around the corner, but a sense of humor can be a solace when nothing else is. Wikipedia, the fount of all knowledge, says: Gallows humor has the social effect of strengthening the morale of the oppressed and undermines the morale of the oppressors. According to Wylie Sypher, “to be able to laugh at evil and error means we have surmounted them.”
Laughing and making crude jokes about the situation is how we survive the chaos and fear—it is what gets us through to the better days that wait just beyond the battle. Life can deal us a hand full of the worst cards, and epilepsy is not the end of the world.
My father’s career in the military ended when he lost his left leg as a result of a bone infection–he was forced into retirement after 15 years of service. While he was in the hospital, his family lost everything when their farm burned to the ground. He had survived WWII, but lost his brother in Korea. Yet despite what he had been through in France and the losses on the home front, he had a wicked sense of humor and an enormous passion for life.
Other people inspire me to avoid self-pity. I have two writing companions, one here in Washington state and one in California. Both are paralyzed, life changing events that would be devastating to any family. Yet they made it through the dark days and live every day to the fullest. Both have wonderful laughs, both make me feel weak in the face of their power and self-determination.
Loss of limbs, loss of physical independence, loss of loved ones, loss of jobs, loss of dignity, loss of face—we all deal with loss and hard times in one way or another.
But in between those rough times, we have times of happiness and joy, forgetting the pain and anger for a moment. Those are the precious hours we have earned, and they are the real life we are given.
Life is a river. What the river has taken is gone, and we can’t get it back, but the currents are carrying us in a different direction, to new shores. Yes, we must adapt to these changes, but that is what humans do.
My life is good today, and easy as compared to last summer. “Easy” won’t always be the case, so I am enjoying it while I have it. Life is always in a state of change, and when I next find myself in the midst of chaos and pain, I will try to think of the good things I still have, and I will find a way to be grateful.
We none of us know what the future holds—all we can ever really be sure of is this moment, this minute, and this beautiful day.
Credits and Attributions:
Wikipedia contributors, “Gallows humor,” Wikipedia, The Free Encyclopedia, https://en.wikipedia.org/w/index.php?title=Gallows_humor&oldid=759474185 (accessed July 22, 2018).