epilepsy dad

Author: Dave

  • It’s Time To Stand Up

    It’s Time To Stand Up

    It’s been a while since I’ve sat in front of the computer to write. It’s also been a while since I’ve felt the need to engage with the outside world. But, to be honest, who would want to engage with the world in the state that it is in?

    A powerful country invaded another in an ongoing war. There’s been a string of mass shootings, including another at an elementary school. The highest court in our country is slowly stripping away the rights of its people while, at the same time, making it easier to carry weapons of war capable of tearing through the children in that elementary school…children the same age as my son.

    The outside world is a shit show.

    It’s only going to get worse. Our country is reverting to a time when women and people of color didn’t have rights. Every group that clawed and scraped to get recognized and to finally see some protection or equality or benefit is going to have it taken away from them.

    Our job as parents is to love our children, protect them, and prepare them to go out into the world. We try to help them understand what is happening and make sense of it. But that is hard to do when we don’t understand it ourselves.

    That’s not entirely true. I understand it. There are people with money and power who are trying to transform the world in a way that gives them more money and more power. They’re dehumanizing the “other” so they can take away their identities and their ability to prevent what is happening, making it harder for them to vote. They’re rigging the game to create a world full of people who look just like them.

    My son doesn’t quite look like them, and the thought that keeps going through my head is, “how long before they take away his rights?” Even in the gun debate, the side that wants to arm every person with an assault weapon says that the problem isn’t guns, the problem is mental health. They’re hand waving to distract us away from the carnage that these weapons do by pointing to a different villain and pretending that if we can defeat it that we won’t need to do anything about guns. The reality is that we do have a mental health crisis stemming from the way we talk about mental health, the stigma associated with it, and the lack of affordable, quality resources that we offer. And we have a gun problem. But the overlap between them is so small that solving only one of them won’t have a meaningful impact on the other. We need to address both.

    My fear with the holding up mental health as the scapegoat is that, rather than investing in better health care and addressing the problem, we’re going to start taking away the rights of people with mental health issues. Taking something away is cheaper and easier than committing resources to address the problem. They’ll start with something easy like taking away guns from those with a diagnosed mental health issue, but its a slippery slope to taking away other rights, too, that eventually will include the right to vote. And it will be the people in charge who decide where that line is between “normal” and what constitutes a mental health issue that poses a threat. (Spoiler: we all have mental health issues to some degree…that is being human and IS “normal”).

    I am not one who normally shares his opinion on these matters. My nature is to avoid conflict and to stay invisible stemming from trauma in my past. These issues are upsetting and, while I have an opinion about them, the impact of the issues is not immediately relevant to me. No one in my circle needs an abortion. No one in my circle was a victim of gun violence. At least, that’s the story that I tell myself so that I feel justified in staying silent. I layer on all the possible consequences of sharing an opinion…conflict, losing relationships, all the way to physical harm to me or my family. Those fears have kept me safe. But they’ve also kept me from being seen.

    There is another problem with staying silent.

    This is a poem with a complicated history by Martin Niemöller called First They Came written after World War II:

    First they came for the Communists
    And I did not speak out
    Because I was not a Communist
    Then they came for the Socialists
    And I did not speak out
    Because I was not a Socialist
    Then they came for the trade unionists
    And I did not speak out
    Because I was not a trade unionist
    Then they came for the Jews
    And I did not speak out
    Because I was not a Jew
    Then they came for me
    And there was no one left
    To speak out for me

    First They Came by Martin Niemöller, 1946

    I’ve been thinking about that poem a lot lately. Different groups (for now) are being targeted, but history is repeating itself. The people in charge are systematically targeting the “other” under the guise of nationalism, convincing segments of the population that the “other” is evil and attacking “true” Americans. They spew lies about scarcity and how the “other” is stealing from them and pretend the current landscape gives every group a fair shot at opportunities. They believe themselves to be the victims, ignoring the hundreds of years of oppression and persecution, and so much so that they don’t want “that” history taught in schools.

    Those in charge have also convinced broad segments of the population that they are victims, too. They’ve activated these groups to fight for their cause by making them believe that they are on the same side as the leaders of the movement. The irony is that these groups don’t realize that, while they might look like the ruling class, they’re an “other,” too. But our lack of critical thinking skills, our willingness to be a victim and to need someone to blame, and our lack of empathy blind us to this manipulation and cause us to focus only on our differences and need to “win” by making the “other” lose.

    These groups mobilize and attack the source of their perceived struggles; usually the same people the ruling class has oppressed for generations. They continue the oppression because, somehow, giving rights and protections and recognition to the “other” takes away from the rights of the majority. Because, for some reason, it’s impossible to be equal. Rather than lifting the “other” to be on the same level, they believe that raising the “other” lowers the status and privilege that the majority has enjoyed throughout history.

    The people that are being attacked may try to speak up, to organize and rally and raise awareness of what is happening. Some just take it because that’s how it has been for them all along, anyway.

    Then, there are the rest of us, not directly affected so we stay small and silent and hope that they don’t eventually come for us or someone we love. (Spoiler: it’s only a matter of time.)

    The frustrating thing is that if you watch the news, you’re led to believe that these opinions come from the majority. They don’t. If you asked every person whether they think it’s a good idea to continue to allow assault weapons with extended clips to be handed to civilians, I’d bet the answer would be “of course not.” If you asked every person whether the woman should have the right to decide for herself what to do with her body, the majority would say “yes.” But we don’t ask everyone, and the majority don’t offer their opinion or don’t think it matters. Hence, the people with the money and the power manipulate the system to force their view on the rest of us until it becomes our reality. But, again, it doesn’t affect us, so we stay silent.

    Staying silent is a choice, and I think about how my choice to stay silent affects my son. Not just for the inevitability that he will be impacted by these changes, but also the example that I am setting for him. I worry about him a lot. I worry about him fitting in. I worry about him being hurt because of his differences. For me, the solution when I was young was to be invisible, but I want so much more for him. I want him to love himself, to be proud of who he is, and to surround himself with people who feel the same. I want him to feel confident and brave enough to show his full self, to believe in things, and to be willing to stand up for those beliefs.

    But if I want him to do those things, I need to do them myself. Not just to model the behavior for him, but also to be seen myself. I don’t want to look back on my life and simply have survived it, I want it to have meant something. That’s not to say that I have to have an opinion about everything or always be standing up for something. But if I stay silent and stand for nothing other than myself, then I will have been part of the problem, and my son will likely repeat the pattern.

    If you’re reading this blog, you probably have someone in your life who is considered an “other.” You might be benefiting from assistance to give that person a better quality of life or an opportunity to thrive in this world in spite of having a disadvantage. You are probably also empathetic because you’ve seen how hard life can be and the struggle that comes from being different. I know it feels safer to stay safe, to stay invisible, and to not speak up. But we’re all going to have to speak up, either because we find the courage to stand up now when so many are under attack, or because eventually we’ll need to because they finally came for us.

    This post is my choice to stand up now.

     

  • Getting Help

    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

    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

    —

    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/

  • Pandemic Life Isn’t New

    Pandemic Life Isn’t New

    In March, we’ll have been in a pandemic for two years. In those two years, the way we live our lives has changed. We live in fear of the disease, of death, of the unknown, and each other. We are more isolated. We haven’t seen loved ones in person. We’re losing our connections to our friends and each other. We don’t go out like we used to, and when we do, we’re masked and hyper-aware of the people who aren’t masked. Going out adds to our daily stress rather than relieves it. It’s safer and easier to stay at home.

    It reminds me of when my son was first diagnosed with epilepsy. The world shut down so quickly once people started getting sick and dying from COVID. The same thing happened when we went from one seizure to two seizures and then watched the doctors try to save my son during our months in the neurology ward of the hospital.

    We lived in fear of his condition, of death, of the unknown. We were confined to the hospital and then at home. We were isolated in a new city far from friends and family. The people we had met had to deal with our unreliable commitments and last-minute cancellations when the seizures and side effects of the medication disrupted our days. We lost our connections to those who couldn’t or wouldn’t understand what we were going through. It was safer and easier to stay at home.

    Rather than focusing on the unmasked danger, our attention was on my son’s unrelenting seizures. We were on constant guard because they were everywhere. Instead of relieving stress and watching him participate in activities like other kids his age, it only added to our stress. I remember standing in as the third base coach for one of my son’s baseball games and watching him stiffen and freeze in place or drop as he had a seizure. I remember anticipating the meltdowns he would have when he was on Keppra and how it hung like a cloud over everything we did. I remember the storm and the anger and the fear and the chaos when the meltdown finally came. I still wake up multiple times at night when my son has a seizure or to look at the video monitor to check in. We started living with constant fear and anxiety long before the world heard of COVID.

    In many ways, it feels like the world finally caught up to where we were. People are canceling plans after experiencing symptoms or a positive COVID test the same way we did when my son had a bad “seizure day.” Or when we were just too exhausted to follow through with a commitment. People are making efforts to stay connected to the people who are important to them and creating more space for each other when life gets complicated. That’s the same thing that happened to us as we went through our epilepsy journey, and we found “our people.” Those relationships are being tested again, but I hope we will find those people on the other side of this, too.

    If we somehow manage not to destroy the world and the pandemic eventually ends, my son will still have epilepsy. We will continue to need that space and understanding because, while the world may go back to some form of normal, it will still be different from ours. But maybe this shared experience during the pandemic will create stronger bonds because people got a glimpse of what it is like to have something outside of their control have such a major influence on their lives. Maybe on the other side of this people will have more patience, empathy, and understanding.

    If you look at how we are treating each other, it’s not looking that way right now. But maybe there is still hope.