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.

It’s Hard To Come Home

After three weeks of traveling, we headed back to Philadelphia. My son laid with his blankets against the window and we watched Colorado disappear in to the distance. The cars and the people were the first to fade, including the friends and family that we left two years ago when we moved east. The roads and the buildings were next to go as we climbed higher. Finally, the mountains were gone beyond the horizon as we straddled the line between the life that we had and the one we are trying to build in our new home.

epilepsy dad going home

It was good to be in Colorado. It was good for my son to be there, surrounded by people who love him. Surrounded by some of the only friends he has. Even though we’ve lived in Philadelphia for two years, for most of that time, he was sick and wasn’t able to make many strong bonds. Colorado, for him, still represents his universe, where everything is except for us. Philadelphia has only a smattering of significance, with a few friends but where most of his connections have come through the hospital or his condition.

It was good for me to be in Colorado, too. It was good to see my family happy. It was good for me to be able to talk face-to-face with friends that knows us from before and after the move and from before and after the seizures came. I move around a lot, and I don’t tend to keep people in my life that span the transition. It’s hard for me to maintain the connection, even though technology has in many ways made it easier. So those connections usually fade, just like the landscape passing by the airplane window.

But leaving Colorado was different. Those connections that we made there were stronger than I have ever had before. The life that we had there carries more weight than the life here that we have still yet to build. In many ways, Colorado still feels like home, but I force myself to respond with “Philadelphia” when I’m asked where home is, as if I’m trying to train my brain to actually believe it.

That makes it hard to come back. To leave a place where my son wore a constant smile. Where the faces of the people who looked at my son were those that love him and accept him and that weren’t only doctors or nurses or therapists. Where we were graced by a few seizure-free days. Where, when we lived there, anything was still possible.

I looked out the window from 35,000 feet. The landscape was a wash of browns and blues and greens. There wasn’t anything to identify where we were, and I felt the pull from both the east and the west. Between the future and the past. Between possibility and acceptance. These two places that were my homes…that are my homes…that mean completely different things.

As the plane hung in the air between those two places, I thought how hard it was to come home.

Especially when you don’t really know where home is.

 

Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

epilepsy dad reality medicine prescription

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

epilepsy dad bruised knees reality

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.