help Archives - Epilepsy Dad

Take Care Of Yourself To Take Care Of Others

I’ve racked up a lot of airline miles in my day. I’m such an expert traveler that I can recite the different safety speeches from the different airlines. Sometimes I’ll sit in my seat with my headphones on and think the words to myself as the flight attendants demonstrate the safety features of whatever Boeing or Airbus metal tube we’re about to push into the sky. “In the event of a loss of cabin pressure, yellow oxygen masks will deploy from the ceiling compartment located above you.” The flight attendant will reach across to the middle seat to the left and the right and let their sample mask drop from their hands and suspend from a rubber tube above the captive audience member.

“Reach up and pull a mask towards you. Place it over your nose and mouth, and secure with the elastic band that can be adjusted to ensure a snug fit. The plastic bag will not fully inflate, although oxygen is flowing.” The snap of the rubber band secures the mask to the painted face and perfect hair of the actors in the repetitive play before the big life lesson is revealed.

“Secure your own mask first before helping others.”

Boom. Mic drop. Well, except for the part about where the emergency exits are. And the safety lighting. And the raft. And I’m sure a loose microphone rolling around the plane is a safety hazard. But that statement about securing your own mask before helping others…that’s the one that gets all the press. But why? It goes against everything we’re taught. It’s selfish to think of yourself first. “I need to save my [insert anyone other than myself]!” “There will be time to put my mask on after I save everyone else.” “Think of the children!” Such a contradiction in a statement that is made thousands of times a day around the world in a hundred different languages but also one that is as relevant on the ground as it is at 30,000 feet.

I’m not the first person to write about the importance of taking care of yourself so that you can take care of those around you. I’ve read the articles, too. They sounded great in theory. But in practice, it’s easy to forget to do it or to realize that you’re not doing it. There’s always so much that needs to be done and no one else to do it or no time to do it all. There are jobs and obligations and doctor appointments and seizure days and batches of keto cooking to do. There are the day-to-day operations of keeping a family in the air and safe and together. There are the “have to” with little time for the “want to”.

In an airplane, there are sensors that detect the loss of cabin pressure and trip the release of the oxygen masks from the cabin. That’s a pretty clear sign that something is wrong. In life, there are no sensors. There are no oxygen masks. Most of the time, you don’t know that your cabin pressure has been lost until it’s too late. Instead of passing out from the lack of oxygen and unable to help those around you, you find yourself in a hole, alone, and distant from those that need you the most. In both cases, it is impossible to breathe.

I’m finding myself in that place again. I feel myself pulling away from those around me. My wife is hinting that she’s feeling alone in the quagmire. I’ve dropped the things from my list that are just for me, things that refuel me, and I’m feeling drained. These are my warning lights, telling me that I’m not taking care of myself and that it’s impacting my ability to take care of my family.

It is time for me to find my own mask and to put it on.

What Got Me Here

“How are you doing?”

It’s such a loaded question. I fear that if I gave the real answer, it would overwhelm the person who asked it and they would never ask again. I’d be surrounded by people who were all too afraid to ask how I was and I’d feel more alone than I already do.

Most people get the obligatory “Good, thanks, how are you?” Closer friends may get more of the story. Maybe not the full story, but some of the mechanical bits about how tired I am because I never really sleep. But we don’t talk about how sad I am, or how much I worry about the future or what would happen if something happened to me? I’m not sure that I even talk about that with my wife as much as I should.

It’s isolating, this not wanting to burden the people around me with the depth of these issues. Besides, I’m a man. It’s not in my nature to share. We internalize, and apply logic, and try to solve an impossible problem. We certainly don’t talk to other people about it. It’s a sign of weakness. Even if other people are going through exactly the same thing and talking about it would be the high tide that raised all ships, it’s better somehow to keep all the boats stuck in the mud.

I know it’s bullshit. At least, my head does. I think. But after so many years of figuring it out myself and seeing where that got me, it’s hard to let go of the idea that the things that got me here are the things that are going to get me to where I want to be. After all, I have a pretty good life. I’ve done some amazing things and traveled the world. I have a Master’s degree and a good job. These successes are the result of my figuring out how to survive in this messy, hard and sometimes cruel world.

Those tactics, though, serve only to protect me from the outside world. Their side effect is to isolate me from the people around me. My wife is going through the same things I am, and when she is looking to me for support and a connection, I’m nowhere to be found, lost in my own inner workings. She may push and poke to see if I am there and I respond by pulling further away and burrowing further into my hole. In the end, we push each other away when we should be moving towards each other, we are left angry and frustrated when we should be comforting and empathetic, and we find ourselves alone when we should be together.

“What got you here is not what will get you to where you want to be.” That is the type of insight you get when you open yourself up to guidance and support. Asking for help is not a sign of weakness. It shows my commitment to my family and my belief that the stronger and better connected the unit is, the better capable we will be to face what is in front of us together. It shows that I don’t have the tools to solve this impossible problem and that it’s important enough for me to develop a new set of skills. It’s setting a good example for my son so that he doesn’t follow the same path of pushing people away and trying to do it all himself. It breaks my heart to think about the difficulties that he is going to have in his life and the idea of him facing them alone.

What got me here is not what will get me to where I want to be. It’s time to work on what will get me there, together with my wife, my family, and my friends.

A Night (Or, At Least, A Few Hours) On The Town

Last night, my wife and I we were able to go on our first proper date (it was her birthday) since we moved to Philadelphia and since our family’s journey with epilepsy began. It was only a few hours on the town, but it came after many months of struggle.

One of the challenges that we’ve had has been to find someone to help take care of our son during the day. Up until now, it’s been primarily my wife, with me filling in after work and on the weekends. But my wife has to deal with the brunt of the behavior every day, all day, as well as struggle to find the time and attention to also give to her business, which she can’t do very often because our son needs near constant attention. And so she has bore the brunt of this for our family, sacrificed much of herself and her business, since it started.

As parents, there was no training for how to navigate this new world. We were simply thrust in to it, as was our son. We’re trying to manage his epilepsy and control and direct his behavior, while at the same time simply trying to wrap our head around what is happening and why it is happening, two questions to which we still do not have answers. Like so many families that are going through the same thing, whether it’s for epilepsy or for another condition, the relentless struggle to simply manage the day-to-day is exhausting, and frustrating, and constant. We have both broken many times, only to go to bed, wake up, and do it all over again.

Back when we lived in Colorado, we got breaks, we had jobs that we could focus on, and we went on dates. We had a few different babysitters, some as young as 15 because they only needed to play with our son and put him to bed. But now, a teenager is no more equipped for the situation than we were when we started. We needed someone who could handle the seizures, and keep him safe during an outburst, and that was trained, and capable, and able to handle the stress of working with a “special needs” kid.

While we need someone with a particular set of skills (cue Liam Neeson), our son’s condition didn’t qualify as a medical necessity that required a nurse so, again like many other families, we’re left in the middle…not a medical necessity but more than a parent can handle. If you need assistance, you need to find it yourself and pay for it yourself, too. Both of those obstacles leave many people helpless, in every sense of the word.

We’re very fortunate that we found an amazing caregiver that is patient and that works academically with our son since he hasn’t been able to attend school. But she can only come for a set number of hours a week…enough to help out and give my wife a chance to breathe, but not enough for her to actually catch her breath. We’re grateful the help and for the opportunity to go out for my wife’s birthday, especially since we know that there are other families that are not as lucky.