epilepsy Archives - Page 55 of 79

The Absence Of Obligation

The music pumped through my earbuds and filled my ears and mind as I crossed the bridge towards University City. A heavy bag of gear laid across my back. With each step, the skates that were tied together and draped around my neck swung left and right across my chest. Two sticks were pressed together in my left hand as my right tugged on the bag strap around my shoulder. The walk took less than fifteen minutes.

The walk took less than fifteen minutes. I descended the stairs and saw my destination. A few more steps and I pushed through the doors and turned the corner to a door with a faded white “4” on it. I rested my sticks against the wall and pushed the door open with my foot and slid into the musty locker room. There were already people, mostly college kids, getting changed. I found an open spot on the bench, dropped my bag to the floor with a thud, sat down, and began the ritual of getting dressed.

Lower body first…jock, knee pads, garter, breezers and socks. Skates are always next, then a big, deep breath to try to shake the butterflies. Upper body…shoulder pads, elbow pads, and jersey. I stuffed my gloves into my helmet, grabbed my water bottle, and walked towards the ice, grabbing my sticks on the way.

At the bench, I finished the routine. Mouth guard in and helmet snapped on. One stick on the bench, the other in my hand as I slid my left leg over the boards and pulled myself up to sit on the edge. A slight shift and I felt my skates make contact with the ice and, without hesitation, I pushed myself forward and picked up a puck with my stick. The butterflies were gone, replaced by excitement and a huge, grateful smile.

In a previous post, I wrote about the importance of taking care of myself so that I can take care of those around me. Playing hockey a few times a month is one of the things that I do for myself. I exercise at least three days a week but, usually, it is with the mindset of keeping myself healthy…a “have to” instead of a “want to”. While I enjoy the benefits and the feeling of a good run after it’s over, exercising is generally a chore instead of something that I honestly look forward to. Hockey, though, goes on the calendar, not on the to-do list, and I count down the days until I play again like it’s Christmas.

It’s hard to make the time to do things for myself. I feel so responsible for my family that I feel like I either need to be spending time with them or doing things for them and there is no room in that mindset for anything else. But I also largely walked around burned out after my son was diagnosed with epilepsy. I was scared, and frustrated, and overwhelmed and those feelings came out when I interacted with my family. I was distant, and irritable, and resentful. I wasn’t able to truly be present and connect with the most important people in my life when it mattered most.

I knew something had to change. I needed to find time to not be surrounded by the enormous responsibility I feel all the time. I needed an outlet to relieve the pressure. On the ice, I am able to focus on my game. I needed to find better coping skills to handle the pressure, so I found someone to talk to that is helping me develop those skills. I write as a way to process my thoughts and most of it is done without the expectation of being published. The absence of an obligation to do these things and to, instead, feel like I am doing them for myself is liberating. These activities help me breathe and to be more present so that when I return to my family, it is hopefully as a better husband and a better father.

If you’re reading this, you can probably relate to the feelings of being overwhelmed, and the feeling that there is no time to do anything for yourself because of the obligations that come with caring for someone that needs more attention and keeping everything afloat. I want you to know that that is not a sustainable situation. You will burn out. You will get resentful. You will find yourself further away from the same people who you are sacrificing for, and you owe it to them and to yourself to find something that you can do for yourself, free of obligation, to refresh, recharge, and to persevere.

What things do you do for yourself that are free from obligation? Share with the community by leaving a comment with an activity that you do for yourself.

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.

Nothing Can Prepare You

When I was ten or eleven, my parents brought home our first computer. It was a Mattel Aquarius (yes, that Mattel) and it changed my life. I was fascinated by the games and the things I could do with a computer and I spent a lot of time figuring it out. My next computer was a Commodore 64, and that’s when I started programming. When I was fifteen, I got a job in a television repair shop where I spent part of my time on the work bench and part on the sales floor selling computers. In the Army, I was the resident computer expert and helped develop update archaic systems to bring them into the modern age.

When I left the Army, I got a job as a computer programmer with a large financial firm. At the time, it was unheard of to get a job in a company like that without a college degree, but I already had much more hands-on, practical experience than most of my peers exiting college. The challenges I faced, the solutions I developed, and my understanding of the practical applications of technology started me on my path as a career technologist.

When I look back, I’ve spent most of my life preparing myself for my life in technology. I read books and magazines and copied the code from their pages, inspected every line, and made improvements. I joined user groups and surrounded myself with people who understood computers and technology and absorbed everything I could. I build and repaired computers and honed my troubleshooting skills to a sharp point and thrust it into every problem that I could. I had fifteen years to prepare and acquire the skills that I needed to land that first job that eventually turned into a career in technology and a gift that I could share with my son.

I was less prepared to be a parent. I had a lot of negative lessons about what a parent should not be or do, but few role models or experiences for the type of father I wanted to be. Part of me hoped that the lack of guidance would present an amazing opportunity to be any type of father that I wanted to be but the darker part highlighted my own insecurities and made it difficult to believe that I could do the right thing. I read books and took the classes that the hospital offered, but the there wasn’t enough time to absorb everything there was to know about being a parent or to practice any of the skills that I would need to raise a child. Still, I was as prepared as I could be and made educated guesses as I tried to navigate the complexities of keeping this young life alive and teaching him about the world around him. Prepared, maybe. Proficient, not even close. But I held on to the belief that, even though I fumbled, that’s what parenting is, and as long as I love my son and show him and try to be a good role model, I’m ahead of the game.

None of the parenting books or classes, though, prepared me for the path my son’s life took with epilepsy. At least when he was born, I had a nine-month lead time to start gathering some information and make an attempt at getting myself ready. The first seizure came out of nowhere. The second, a few months later, felt like someone pushed us down an infinitely deep, pitch black hole without warning. in the beginning, I felt desperate, out of control, and helpless. I couldn’t see and didn’t know what was happening around me. There was no preparation for the descent, and I was afraid of the dark, of falling, of not being able to right myself and save my wife and my son. It was terrifying. It is terrifying.

Even though there wasn’t anything that could have prepared me for what is happening, there are resources available that give us back some control in an otherwise uncontrollable fall. In the years since his diagnosis, we are finding people and information that offer some light in the darkness, just enough light to see that we are not alone.

Most importantly, my family is in this together and we’re finding each other, too. These lessons that I am learning and these feelings that some days overwhelm me have forced action on my part to face these fears, to find what is most important, and to open up to my wife and my son and to show them that I am here and I am present.

Somewhere in that darkness, in the falling, in the fear, I felt a hand, so I reached out for it and I found my wife. I reached out again into the emptiness and I found my son. As I pulled them closer to me, I had one thought:

“Don’t let go. Don’t ever let go.”