Category: epilepsy

Getting Help

I’ve been thinking a lot about change lately. So many things have changed for my family in the past year…my son is in a new school, we moved to a new house in the suburbs, and I started a new job. But as wonderful as those things are and as grateful as I am for them, they come after other changes that I have made in my life since my son was diagnosed with epilepsy.

Early on, it was clear that nothing could have prepared me for how my life would change after my son started having seizures. We all come into relationships as works-in-progress, and we bring into every relationship the good and the bad. We bring our hopes and our fears, our strengths and our weaknesses, our inspiration and our trauma. When a crisis comes, we fall into our old patterns and habits to deal with the situation and to survive, even if what helped us in the past won’t help us with this situation.

My old patterns were to disappear, get small, and internalize my feelings. But when I would internalize my feelings, I would leave my wife and son feeling isolated and abandoned. That was especially true for my wife, who was in the same position I was trying to deal with our son’s condition. My disappearing meant we were both dealing with the situation alone rather than together. We drifted further apart when we needed to be closer together. We went from dealing with my son’s diagnosis and the fear of losing him to also losing each other.

Far too late into our journey, and mainly at my wife’s insistence, I realized that I needed to change how I was dealing with (or not dealing with) our situation, so I took the first step.

I got help.

There is a stigma around seeking counseling or therapy, particularly from men. We think we can muscle our way through and figure anything out. But that attitude does more harm than it does good.

I’ve had a mixed relationship with therapy over the years. When I was in my twenties, I tried seeing a therapist, but I wasn’t ready to deal with my issues and the provider wasn’t a good fit, so I stopped. Years later, my wife and I had a few weeks of premarital counseling, and we also saw someone together a few years after we were married. But, even as the relationships around me were getting worse, I never considered addressing my own mental health.

By the time I did, so much damage had already been done. I was anxious, I wasn’t sleeping, and I was depressed. My relationship with my wife was highly tenuous because we didn’t have one outside of helping our son survive, and even there, she did most of the work while I just went to work.

My therapists helped me see my patterns. They helped me understand the impact those patterns had on my well-being and the impact they had on the people around me. They helped me understand why those patterns existed and how they might have served me in the past, dealing with trauma stemming back to my childhood. They helped me recognize when the patterns were taking over so that I could do something different…to break those patterns and to create new responses and new behaviors that were healthier and were more appropriate for my situation today. These are all things that I could never have done by myself.

It’s not easy. There were aspects of my past that I had never fully acknowledged or addressed. And it’s not quick. I’ve been working with a therapist for years. People are messy, and it’s a journey to unravel that mess. But I’ve seen how the work has improved my life and the relationships with the people around me. That includes my relationship with my wife, my son, and myself.

With any chronic condition, especially one that is in your face every day, it can feel like that only way to deal with it is to escape. But these changes made me realize that the way to deal with life isn’t to run away from it but to be more present in it. It can seem counterintuitive, especially as I’m watching my son have another seizure on the monitor at 4AM day after day. But running away from it doesn’t fix anything. It only does more damage.

Being present doesn’t fix everything, either. My son still has seizures. Life is still stressful, especially during the pandemic. We’ve still got many of the fears and concerns about my son and his future. It’s still a lot of physical and emotional work to get through the day. But the difference is that by being present with both my wife and my son, we’re doing it together.

Out of Balance

One night before bed, my wife came and sat next to me.

“I know you’re tired,” she said. “But when you get that tired, the way you check out is to be really short with us, and like we are bothering you. We haven’t been spending a lot of time with our son, and that’s how he sees you at night.”

Of course, she was right. Looking back, I can see how I responded with one-word answers or a tone of disinterest. Our nights became about checking out by sitting on the couch watching TV while our son played video games online with his friends in the basement. Dinner time was mostly apart, as well, us watching TV while he ate and watched his iPad.

It was too easy to fall into this routine. The long winter nights, the lingering pandemic, the burnout from keeping everything together leeched our energy and motivation. We checked out long before it was time to check out, and anything that required exerting effort or interest was met with resentment and disdain.

After my wife called me out, I felt ashamed and guilty. I used the excuse of letting him play with his friends to justify my behavior. “He’s doing what he wants to be doing, so it’s ok to check out.” But it was just that…an excuse.

I’m glad that he has friends now from school and has more independence to hang out with them virtually. It’s what he wants to do and what he should be doing, especially after many years of isolation.

It also comes after so many years where we were always “on,” too. We were the caregivers of a child with epilepsy, with all the care and worry that required. We were his emotional regulators when he couldn’t do it himself. We were his teachers and his entertainment when he was too sick to attend school. That was in addition to trying to manage our own lives, jobs, and relationships.

But moving from one extreme to another threw everything out of balance. That’s not to say that the amount of time needs to be equally portioned. My son is getting older, and we’re not his only source of entertainment or care anymore. He should be spending more time with friends and more time with himself. But that doesn’t mean those two things should be the only things in his life or that they are excuses not to be a parent.

Or a husband. Sitting on the couch next to my wife isn’t spending time together. We’re relaxing but not interacting. We just happen to be occupying the same space and doing the same thing.

As in most situations, awareness is the first step to change. I’m grateful to my wife for pointing out where I was and how I was responding to our son. Since then, I’ve been more aware of my tone, and we’ve also started having more family dinners, more walks in the neighborhood, and more ping pong tournaments in the basement. My son still plays with his friends, and my wife and I still veg out on the couch watching television. But, now, those aren’t the only things we do.

Trade-offs

I started this post in 2021 when we were still searching for a new school for our son. We found a new school and moved out of the city since then, but I wanted to share it because the sentiment remains true. There are always trade-offs.

We make trade-offs every day. Any time there is a limited resource, like time or money, we have to choose how to spend those resources. I could spend my morning writing, or I could get more sleep. I could buy a new car, or I could go on vacation.

Sometimes, there are factors involved that help us make a choice. If I didn’t get a good night’s sleep last night and I didn’t want to be miserable all day, I might choose to use that block of time to get more sleep. If my car is falling apart and I need it to get to work, I might choose the new car over a vacation.

Trade-offs may defer some choices. I might need to buy that new car now, but I can save up and take the vacation later. But they could also mean giving up one choice completely.

Every situation is different. At different times, different things take priority. Maybe you’ve been cooped up too long and decided to take a vacation rather than buy a new television. Perhaps you like to travel a lot, so you live in a smaller apartment or house.

Wealth and income play a big part in whether or not there is a trade-off, and it changes the scale at which those decisions need to be made. If I had a million dollars in the bank, I could likely get the new car and go on vacation. But if I have nothing in the bank, maybe I can’t choose either.

And then some situations might feel like trade-offs, but they aren’t. We’re exploring schooling options for my son because his previous schools couldn’t accommodate him. Virtual learning is taking a much bigger toll on him than we anticipated, so we are once again looking at in-person schools. But the ones that can accommodate him and his needs are private schools which cost as much as going to a good college every year.

On the one hand, we can use some of the money we would put away for him to go to college now to cover some of the costs. But that means he’ll have much less money down the road should he eventually go to college.

Or it could mean making trade-offs in other areas. One thing we like doing as a family is taking vacations. Last year, we were fortunate enough to go to Maine a few times. When the world was open, we visited friends and family in Colorado.

I realize how fortunate I am to be talking about deciding between a private school and college or vacation. There are issues of equity and equality that are pervasive around the world that affect the choices we have and our ability to choose. I know there are families out there making much more difficult choices, like deciding between medication and rent or groceries. They are deciding between the quality of the education for their children and their quality of life. No one should have to say things like:

“Sorry, buddy, we can’t do this thing you really want to do because we have to pay for your school.”

“We can’t have this nice thing because we have to pay for your medication.”

When you are a family that has a child with special needs, more things are a must. Medication, including some that insurance doesn’t always cover. There is the cost of insurance itself, and therapy, and special equipment or food, not to mention enough time and support to be able to go to work and to doctor appointments.

We end up not only dealing with a medical condition that we weren’t prepared for and all the complexity and fear that comes with that, but also juggling these new tradeoffs and limited resources. It’s overwhelming. It’s neverending. It’s easy to feel trapped.

There is no easy answer. We’re almost eight years into our epilepsy journey and, while we may have normalized aspects of this life, we don’t have it figured out. We can’t. Things keep changing, and we keep making choices based on where we are at that time, and hope we make the right one.

There are no solutions. There are only trade-offs.

Thomas Sowell

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While there is no easy answer, there are a few resources that we’ve found along the way that I wanted to share that may help you feel a little less trapped. If you have any resources that you’d like to share, please do so in the comments below.

Disclaimer: I am not a lawyer or a financial or tax expert. Please consult a professional or the organizations listed if you need advice.

Child Health Insurance Program (CHIP) – Not available in every state, but can act as secondary insurance. Although it also serves no- and low-income families, some programs provide assistance based on the severity of the medical condition, too. The Pennsylvania program has an additional benefit of reduced admission to museums and other cultural events. https://www.medicaid.gov/chip/state-program-information/index.html

ABLE – Tax-advantaged savings program for individuals with disabilities. Similar to a 529, but can be used for more than just education. Depending on the state, contributions may be tax deductible. https://www.ablenow.com/

National Organization for Rare Disorders (NORD) – We had a hard time getting a new medication covered for our son, and NORD had an assistance program that helped us out. https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/#section-1

Epilepsy Foundation – A lot of resources. Check our your local affiliate who can provide resources and support groups for your area. https://www.epilepsy.com/