Life Without Epilepsy

For almost exactly nine years, we lived with epilepsy.  For just over the last year, we have lived without it.

At first, you go through all the standard stages of grief – denial (Riley cannot really be gone), anger (why did he have to live with epilepsy in the first place, why couldn’t he just be like all the other dogs?), bargaining (bring him back and I’ll do anything; bring him back without epilepsy and I’ll really do anything you want), depression (what will we do without that face) and acceptance (I can’t believe he’s gone, but I know he is).

But then, a different kind of reality sets in, and a type of guilt you’ve not dealt with before.

For almost 283,824,000 seconds our lives revolved around Riley.  Literally, and figuratively.  Trips to the grocery store were planned around his medicine schedule.  Nights out or trips alone were only scheduled when one of our competent sitters was available.  One night, we went to a concert and Riley slept in the car the whole time.  We bought webcams to watch him.  We did nothing – not work, not play, not anything without considering Riley and his needs.

And then Riley was gone.  Just like that.  In literally an instant.  One final breath.  Just one of those 283,824,000 seconds.

It takes a day, or two.  Maybe a few.  And you realize one day that the medicine alarm didn’t go off, and you didn’t even realize it.  Years of having multiple alarms go off multiple times a day and now, none.  You are walking around Walmart and look at your watch and momentarily panic, and then realize it doesn’t matter.  Riley’s 2pm pills aren’t necessary.  You see a advertisement for a local festival and really want to go but it will probably last after 10:30 pm.  And, again, you realize it doesn’t matter.  You’re free to go, if you want,

So you go.  You keep shopping at Walmart.  You book that client meeting for 2 pm.  You register for that triathlon out of town.  You run a little further in the morning before work.

You go to bed at 9:30 at night and sleep straight through until 6:30 in the morning.

And you feel guilty.

This isnt’ right! I can’t do this!  Riley needs me!

But he doesn’t anymore.

He is over the Rainbow Bridge, where no epilepsy monster can touch him.  No seizures, no ataxia from his meds, no blindness.  No issues whatsoever.

Like learning to live with epilepsy, you learn to live without it.  It should be easy since you grew up, went to college, got married and started working all without it.  But learning to live without epilepsy takes almost as much as learning to live with it.

It is a shift, again.

Adding epilepsy to your daily routine makes you feel like you’ve “done something”.  You have altered your life for a precious creature’s greater good.  Eliminating that element from your day makes you just like everyone else – working for a living, taking care of your family, and so on.

 And that is not bad by any stretch of the imagination, it is just a new normal.  You are back to the person you were before epilepsy entered your life.  A wife, husband, mother, father, sibling, employee, employer, neighbor.  You are just you.

And you realize one day that it is okay.  “You” is not such a bad person to be.

But you still feel guilty.

Some days more than others.

They say that to know love you have to have had loss.  I don’t know if I agree with that or not.  I think to know love you only have to look the eyes of dog.  One who’s former family has failed him.  One that has been sick all night and is curled up in a ball next to you.  One who hasn’t had a good meal in a while and can’t stop wagging his tail as you give him food.

One who has slept all night in the first time for a long time, safe under your care.

 We are not the first family to go through this, won’t be the last.  But I want to put it out there that it is okay.  That first morning you sleep all night because you didn’t have to listen for every sound from your warrior, its okay.  That first day you come home from work and realize for the first time you worked all day, its okay.  The first time you just plan something you really want to do, and then do it, its okay.

Our warriors never leave us, not really.  They are still in everything we do, but just not the deciding factor in everything we do.

We can live and love, and learn to do so guilt free.