epilepsy dad

  • Things That Matter

    Things That Matter

    I’ve lived my life in a bubble.

    When I was young, my mother worked hard to provide for my sister and me, and I remember that struggle. But when my stepfather entered the picture, life got easier. We did fun things. We camped every summer on the beach. We had a house, and food on the table, and an Atari 2600. We weren’t rich but I always had everything I needed.

    After high school, I went out on my own. I lived my life largely without incident. I joined the Army “between wars”. I went to college debt-free funded by the GI Bill and my employers. I got a job in an industry that pays well and provides affordable insurance and other benefits.

    Even though I have traveled the world, I always felt isolated and unaffected by it. Wars were fought by others and were very far away. Elections were about issues that I had no reference for. The rhetoric was noise in a system designed for winners and losers instead of compromise. The talking points and issues didn’t relate to me so, even though I voted, I didn’t really participate. I stayed in my bubble and carried on.

    They say that having a child changes you. When my son was born, a tiny hole opened in my bubble. It was large enough to let in more joy, and fear, and hope than I ever thought possible. At first, it was overwhelming. I looked through that opening and saw the world, in many ways, for the first time. The world that I would leave for my son was cruel and selfish but hopeful and changing. Instead of opening the hole more, though, I pulled my family through it and the bubble again closed to protect us.

    When my son was diagnosed with epilepsy, the bubble began to disintegrate. I could see it happening. The outside world became clearer as the layer of protection around us grew thinner. Even with health insurance, the medical bills added up. There were “maximums” and things not covered by our plan. The “pay later” designation of our plan lived up to its name. I finally had a reference, so I wondered what this was like for someone with no insurance at all.

    Then when my son was finally able to return to school, he was going back in as a child with special needs. If you haven’t gone through the process, there is no adequate way to explain it. The fear and frustration that comes from trying to prove to a system that sees your child as a financial liability that he needs and is worth the extra resources is anguishing and exhausting. And you get to redo it every year, for every grade, until they hopefully graduate.

    Eventually, the bubble that I had lived my whole life in burst under the pressure from the outside world. Now, I am paying attention. Now, there are things that matter.

    There are debates about changing health care laws. That matters. My son has a disability. I have to think about what it will be like for him to try to get insurance with a preexisting condition like epilepsy. Could he even get it if the laws change? Could he afford it? Or is he destined to rack up medical bills for the rest of his life and struggle financially?

    My son also has learning difficulties. At school, he has an aide and has special accommodations to help him. These services are expensive and privatizing public education means my child is a drag on the bottom line. Even the placement of the bar these services should help him reach is under debate. Should these services help him keep up with his peers or provide “just enough” to make him functional. That matters, too.

    With the bubble gone, I’m looking beyond myself. There are other important issues that affect the people around me. It is not a far leap from how we treat people that are different because of where they come from or what they believe to how we treat people that are different because they have a disability. History has shown the consequences of ignoring that connection. Intolerant regimes persecuted their own disabled citizens alongside the outsiders they deemed unworthy.

    So, when my coworkers staged a walkout to protest the immigration ban, I joined them.

    I would have gone anyway. Many of my coworkers and friends are directly impacted by the ban and I wanted to support them. But I went for myself and for my son, too. Intolerance of any kind is dangerous, is not who were are, and does not represent the world that I want my son to inherit. That matters most of all.

    It’s time to embrace this life outside the bubble. It’s time to believe in something. It’s time to pay attention, and it’s time to take action on things that matter.

  • The Appearance Of Being Strong

    The Appearance Of Being Strong

    We’re more than two and a half years into our journey. For a third of my son’s life, he’s lived with seizures. It’s getting harder to remember the time before them. The carefree days before hospitals and therapies seems more like someone else’s life.
     
    Our new life doesn’t feel like it is getting any easier, even being so far into it. There is no resolution. There are no reasons. There is no consistency except for the looming threat of another seizure. It is chaotic to manage his diet, his medicine, and his appointments. There is a never ending stream of complexities in our lives. On the good days, it feels like we’re barely treading water. On the bad days, it feels like we’re drowning.
     
    We’ve met a lot of families that have been dealing with seizures much longer than we have. I look at them as if they are the strongest people in the world, dealing admirably with such an impossible path. They somehow figured out how to manage the unmanageable. Their perspective keeps them sane and grounded and able to function in such a complex system. I’ve often wondered if we would find that place, and if someone on the outside would think the same thing about us.
     
    I keep waiting for a switch to flip, for that “a ha” moment where the mystery of how to navigate this life is explained. So far, it hasn’t happened and it’s frustrating. I’m a smart guy. I figured out how to ride a bike, drive a car, program a computer and build a robot. But there is no pattern in what is happening. There’s nothing for my mind to organize around and to sort out. We are in a constant state of reaction with very little that we can control.
     
    The lack of control and my inability to figure it out makes me feel like we’re not there yet. People around us use words like “strong”” and “brave” but I can’t let that in because I don’t believe it. Every seizure, every outburst, every failed medicine, every closed off path, every false hope. As much as I try to hide their impact from the outside world, it feels as if I wear them as visibly as I wear clothes. I’m only forcing myself to do what I need to do for my son and my family.
     
    But, maybe, that’s what everyone else does, too.
  • Getting Unused To The Sound

    Getting Unused To The Sound

    We’ve lived almost every day of the last two and half years with the sound of my son having a seizure. Usually, in the early morning, the distinctive sound my son creates as his body tenses and contorts echoes through the halls until it reaches my ears and stirs me from my sleep. For two and a half years I have been on guard, listening for that sound that served as an alarm calling in the dark. I’ve spent most nights periodically waking to watch and listen to the video monitor. This has been our routine. This has been our life.
     
    When his seizures started, I would rush to his room with every seizure and lay with him until he fell back to sleep. Sometimes I would catch another seizure when it started. It was somehow comforting being there with him when they happened, from beginning to end. To hold him, to rub his head, and to let him know that I was there and that it would be over soon and that he would be okay.
     
    As time went on, my son started putting himself back to sleep before I could reach him. I started watching the monitor as he came out of a seizure to see if he needed me. More and more, he would simply turn over, pull the blankets back up to cover his body and fall back to sleep. As much as I liked being there with him during a seizure, the new arrangement gave me a few extra minutes of sleep.
     
    In the last month, we’ve also been able to string together (we think) a few seizure-free days in a row. I say “we think” because some of his are so short that they are easy to miss, especially in the middle of the night. But on a few of those nights, he was with us and he did not seize. He even had his first seizure-free week since they began.
     
    I felt like we turned a corner. We made the most recent change to his medications a few weeks before those seizure-free days and I almost let myself believe we had solved the riddle. But then my son got sick and we were again visited by our most unwelcome guest. He rides such a fine line between seizing and not that even a common cold can undo a streak.
     
    Hearing seizures in the middle of the night had become such a part of our routine that, when they stopped, it was easy to fall into the trap of thinking that they were gone. I stopped thinking that a life without seizures was possible, but when we had a week without them, I was too quick to assume that they wouldn’t come back. I felt as if we had been lifted from this unforgiving place. When they did come back, I fell from such a great height that the impact nearly crushed my spirit.
     
    As grateful as I was for those days without seizures, they tugged at my desperation. They opened me up at my seams and stuffed me with false hope before closing me off. Now I’m pulling at the stitches trying to free myself from unrealistic expectations.
     
    The reality is that the sound of a seizure will be a part of our acoustic landscape as long as our son is living with us. Even if we see another stretch of seizure-free days, the threat of another will always be there. There is no escaping its reach, no getting unused to the sound. The only thing I can do is respond when the alarm sounds, which I will do whenever I am called.
     
  • Superman And Me

    Superman And Me

    When I push through the huge revolving doors at my office, I undergo a transformation. Superman had his telephone booth where he changed from a reporter to the Man of Steel. I have a spinning wall of metal and glass where I morph from the father of a kid with epilepsy in to the Man of PowerPoint.

    epilepsy parenting family work superman

    Once I step to the other side, I hide my true identity. No matter how little sleep I got the night before or many seizures my son had that morning, I smile at the guards as I pass through security. I say ‘Good morning‘ to my fellow passengers in the elevator and the people I pass in the hall. Inside the walls of my own Daily Planet, I separate my two lives and only show the person that my colleagues expect to see.

    The thing about leading two lives is that they are impossible to separate. Clark Kent doesn’t stop being Superman when he wears his glasses. Both identities share the same thoughts and emotions and super powers. He thinks about saving Metropolis while sitting at his desk. He listens for the call of someone who needs him while he grabs coffee in the breakroom. He can’t be one or the other when he is both, regardless of which mask he wears.

    For an ordinary person, it’s exhausting maintaining this separation every day. On bad seizure days, I struggle to keep my focus on my work. My thoughts often find their way back to my son, wondering if the seizures have stopped or how he is doing in school. I check my phone constantly to see if I missed a call or a text from my wife letting me know that I am needed somewhere else. Superman only had a city to protect. My son is my world.

    With every interaction, it takes energy to adjust my mask and ensure that it hides the turmoil inside. After a night without sleep, it’s especially difficult but there is no other option. I have to be able to focus on my work. My job is what pays the bills and provides us with health insurance. The weight of responsibility and the need to perform often feels like it would be too much even for Superman. And yet, somehow, this is my every day.

    I don’t always succeed. There are days where it is all too much. Try as I might to hide it, pieces of my reality are visible to the outside world.

    Their planet crumbled but Superman, he forced himself
    To carry on, forget Krypton, and keep going
    ~Crash Test Dummies “Superman’s Song”

    On those days, I do my best to carry on and keep going, too. I will myself to get to the end of the day so that I can go back through those revolving doors. When I step out onto the concrete, I start to undo my disguise. With every step that takes me closer to home, I shed the layers of my corporate costume. No longer needing to exert the energy to maintain my facade, I drop my mask to the ground.

    As I take those last few steps up to our front door, I open myself up and let the joy and fear and hope and love wash over me. Turning the doorknob, I can already hear laughter from the other side of the door. Pushing the door open, I’m rewarded for my impossible effort during the day with “Daddy!” and I let out a cleansing exhale that I’ve held in all day.

    This must be how Superman feels when he takes off his glasses at the end of the day. Finally, I can be who I am supposed to be.

  • To CBD Or Not To CBD

    To CBD Or Not To CBD

    There is no shortage in the news of sensational headlines highlighting the miracles of CBD and medical marijuana as a treatment for epilepsy.

    The articles write about children who tried any number of medications that failed to control their hundreds of seizures a day but were all but cured by CBD.

    After two years of uncontrolled seizures, we were so desperate for something that could help our son so we brought CBD up with our doctors. At the time, it was illegal in Pennsylvania and our doctors weren’t comfortable talking about it because they had no experience with it. We were unable to get into the CBD trial happening at our hospital so we discussed moving back to Colorado. Our doctors said there was only limited testing on the drug and that it was focused on specific syndromes associated with epilepsy. There was little research on its long-term effects or its interactions with the antiepileptic medications. Another concern we shared with the doctors was the inconsistent quality coming out of many CBD providers. At the time, we made the decision to not try CBD because it wasn’t worth the risk of introducing a drug with so many unknowns.  We had seen what a bad reaction to a medicine looks like for our son and we weren’t willing to risk the progress that we had made.

    My son was still having seizures every day so we started to make plans for a VNS surgery. I struggled for weeks with the decision and, even after it was made, I agonized over the thought of surgery for my son. Then, in April of 2016, medical marijuana was legalized in Pennsylvania. We again brought up CBD as something to try before we pursued the surgery and we were referred to doctors in Colorado. The waiting list to get an appointment was so long. Even after a trip to Colorado, we were not able to get an appointment. We spoke to one of the doctors from our neurology department that was familiar with CBD and decided to give it a try.

    When the bottle of oil arrived, I tried to temper my expectations. We’ve tried and been disappointed by too many medications already and, regardless of the press clippings, I knew that, for every sensational success story, there were countless stories with less than miraculous results. It may not work at all, or my son may have a negative reaction, as he has had from many other treatments.

    The dosing to introduce CBD is slow and we were told it could take months before we saw the full effects. As the parent of a child with epilepsy, I’m no stranger to hearing about patience. That practice doesn’t make it any easier, especially watching my son continue to have seizures. But we started the treatment with a hopeful, open mind and as much patience as we could muster.

    After a few weeks, we were up to a functional dose but we didn’t notice any difference in my son’s seizure burden. We increased the dosage again and continued to wait. By the third month, we did see a slight decrease in seizures but nothing like the stories in the news and nothing we could directly attribute to the CBD. With the advice of our doctors, we decided to stay at the dose we were on and adjusted one of my son’s other medications. The result was our first few small stretches of seizure-free days.

    I was grateful for those days but I was also disappointed. I had hoped that the CBD would be the miracle drug we were looking for. I hoped it would stop his seizures and that we could get off the other medicine and the ketogenic diet. So far, we haven’t been able to reduce any other medications. Ultimately, we’re not quite sure how much CBD is actually helping my son or if it is helping him at all. This is how it goes sometimes with any drug that tries to control something as complex as the brain. You try it, see if anything changes or gets worse, and then decide what to try next.

    For us, I think our experiment with CBD will be coming to an end. We’re going to adjust his regimen and, once those changes take hold, we will start weaning off CBD. If anything indicates that it was working, we will reevaluate. I expect, though, that it will be another medicine to add to the list of ones that didn’t work for us.

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About

I’m Dave. I write about raising a son with refractory epilepsy.
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