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.

Life cycles

You are born, you live, you die.

You are a child. You become a parent.  Your parents become childlike.

Your parents loved, nurtured, and protected you in your youth.  You love, nurture, and protect your parents in their age.

Your children grow to become parents.  

And it continues.

Life, cycles. 

The Three Rs

Republican, Racist, Redneck.

I was called all three last week, all because of one very small Twitter post.  Fox & Friends posted the new Nike Just Do It campaign ad, and asked for thoughts.   As you may know, it featured Colin Kaepernick with the slogan “Believe in Something.  Even if it Means Sacrificing Everything”.

 In 140 characters, or less, I managed to set off a string of likes, retweets, and really nasty responses.  All I said was “So glad I switched to New Balance, I would have hated to have to burn all my running shoes.  Bad call @Nike!”

One of my detractors came in with a long bit ending with  the line “stick with prez bonespurs - a true american - DRAFT DODGER!”  Atypically for me, I engaged this person and asked where, anywhere, in my comments did I mention the President, or support for the President, or anything that would link me to the President.  Here, some folks jumped in and quickly devolved whole discussion into a political mess with conversations of the military service of the last four or five presidents.  Really not relevant.  Another one, staying with the Republican theme here, just flat out offended me by saying he doubted that me or most people even knew about Colin Kaepernick before the President made it a political football.  I just responded to him with the link to my blogpost (https://deanne-randomthoughts.blogspot.com/2016/09/when-should-equals-must-but-can-does.html) that was originally published in September 2016 where I discussed this topic.  One month after the initial incident.

Then some others jumped on the bandwagon and that was when the racists comments started.  Again, I asked where in my comments I had ever mentioned Mr. Kaepernick’s race.   I was told I brought race into it when I was offended that Colin Kaepernick kneeled during the anthem but not when Tim Tebow did it, therefore I was a racist.  What did Tim Tebow have to with this?  How does this person labeling me a racist know what I did or did not do with this alleged kneeling by Tim Tebow (who, by the way, kneels in prayer all the time on the sidelines of a game and any picture from the internet can be pulled to “support” this theory that he kneeled in disrespect.). I asked them why it was not possible for me to disagree with Mr. Kaepernick’s message itself, and not the messenger?  Which is what I was doing.  Silence.  And today there was another one that called me a “simp” and told me that if Colin Kaepernick was protesting something like animal abuse, I would be standing right there beside him.  So I thanked him for making my point for me, because he was right.  If Mr. Kaepernick was protesting animal abuse I would be right beside him protesting as well because that was a message I could agree with, so surely this tweeter could see my point – protesting the message and not the messenger himself.  (But I still would never do it by kneeling during the National Anthem, ever.)

Although the tweeter meant it as a slam.

And the third one was this:

Maybe I am misinterpreting it, but I think “redneck” was the message behind the photos.


And several more questioned the sanity of burning your perfectly good, purchased with good money shoes, just for effect.

So, how about a reminder of what started this brouhaha to start with.   The following is quoted from an interview posted on CNN’s website:

"I am not going to stand up to show pride in a flag for a country that oppresses black people and people of color," Kaepernick, then 28, told NFL.com's Steve Wyche, the man who broke the story.
"To me, this is bigger than football, and it would be selfish on my part to look the other way.
"There are bodies in the street and people getting paid leave and getting away with murder."

I have nothing but the utmost respect for law enforcement.  And that is why I have a problem with his statement.  And with him wearing pig socks (cartoon pigs wearing police caps).  His comments were aimed at a profession, not a person.  Are there bad police officers, sure.  There are also bad CPAs, teachers, doctors, clergy, football players, investment bankers, you name a profession and you can find one.  (And, before the haters jump in and tell me “death” is not a result of one of these other professions being bad I respectfully disagree – errors in health can result death, financial ruin has caused people to take their own lives, and so forth.)

His comments came at a time when there were several conflicts with young black men and police officers.  There was rioting in Missouri and in Maryland when the police officers were found to not be guilty of murder but instead justified in their actions.  It became open season on police officers, black and white.  And folks like Mr. Kaepernick weren’t doing anything to help matters.  Again, he had the right to disagree, to protest, to make his voice heard but there is a time and a place and a manner to do so.  He chose none of the right ones.

He became a polarizing figure.

Now, back to the ad.

Believe in something.  Even if means sacrificing everything.

As one of my Facebook friends (thank you, Jean Gay) pointed out, perhaps former Arizona Cardinal Pat Tillman would have been a better choice – giving up a football career to join the military after September 11, 2001, and ultimately dying in Afghanistan.  How about that as a face of believing in something to sacrifice everything?

What, exactly, did Mr. Kaepernick sacrifice?  He was already riding the pine in the NFL.  I know I hadn’t heard of him before all this so he wasn’t a huge shining star in the sport.

I know that Nike executives didn’t lose any sleep over the fact that I won’t buy any more shoes or workout wear from them.  MAC Cosmetics didn’t shutter their door when I emailed them I would no longer buy their products after they chose Miley Cyrus as one of their faces.  They responded they were sorry but there was no way they could have found a representative that would make everyone happy.  Now, for me, giving up MAC cosmetics was a much big problem, but I did it.  I haven’t thrown out what I had, no, but I’ve not bought anything since then either.

I know I’ve asked before but why do these conversations always seem to be reduced to name calling?  I made no references to anyone, and I never responded by calling anyone anything – not a liberal or a Democrat or noted the color of anyone’s skin.  No one knows how I voted in the last election.  No one knows how I feel about the President because I’ve never said it.  Why can I not disagree with someone who happens to be a different gender/race/political affiliation without it making me one, or more in this case, of the Three Rs?

Why can’t we just say our peace and then agree to disagree?

Who Was Weak?

Last week I was stuck in an airport.  Apparently I have a face that says “talk to me!”as I was approached by a woman as I was looking for a plug for my charger so I could start looking for hotel rooms and alternate flights. 

I have a cart full with five suitcases.  I have been at the airport since 3:35AM.  I had maybe five hours of sleep and I have only had one large Dunkin Donuts coffee.  I am tired and frustrated.

All I wanted at that moment was to be left alone.  All she wanted was to talk.

It didn’t take long to surmise she was homeless, but had found a safe place to stay.  She said she was from Egypt, but lived in the US now.  She was at the airport, waiting for her brother.  One brother had been killed by two youth on the West Bank of New Orleans, but this brother was due in any day.  She waited, day after day, for him to arrive.

I couldn’t tell her that she was waiting in the ticketing area; arrivals would be downstairs.

She went on to tell me about all her education and degrees, including sports medicine, anatomy, and biology, and all the places in the world she had studied.  I think she listed off two or three Masters Degrees.

Eventually, she got around to asking about my family, and if Billy and I had children.

I cannot tell you how many times in 29 years I have been asked if we have children.  True, it is a normal, logical, question to ask someone.  Especially someone you are just trying to get to know. (Although it is not a question that I usually ask someone because I know how the other side might feel.)  And that would be fine, if the questions stopped there.

I answer her question, politely, “no”, and then try to move the subject on to me leaving.  I really have to go.

While I have no place to go and all day to get there, I am ready to move on.  And she has completely ignored all the signs I have given that I am ready for the conversation to be over and I am just trying to not be rude at this point.

But she doesn’t stop.  She keeps asking about why we don't have children.  Most people don’t.  They take "no" as the answer and go in another direction.  I have related in these blogs one time that a woman kept asking me about having children, in front of my nephews.  My sweet Clay, only three or four years old at the time, piped up that I didn’t need children because I had them (Hayden, Clay and Brett).  And my heart was so happy at that moment.  Enough said (from the mouths of babes).

Unfortunately, Clay was not here on this day to ride in and save the day.  It was up to me.  And I am just too freaking nice.  I briefly answered her questions, one word answers wherever possible,  all the while pulling my plugs and packing up my phone and making sure all my stuff was in order.  But this lady couldn’t see all that and take the hint.  She just keeps on.

Finally she asked a question that I had never heard before, of course, no one had ever pushed me this far before, either.  Her question was “who was weak?”

Who was weak?

Wow.

In other words, whose fault was it?

Like we'd done something wrong.

To her credit, the lady finally apologized for pushing me, I'm guessing it was the look on my face that finally turned on her lightbulb.  She said it was her background in anatomy that was raising her curiosity, and so on, but that question still got me to a brink I had never reached previously.

Still unable to just walk away and leave her standing, for whatever reason, perhaps for no other reason than I was just so caught off guard that someone would ask that question, in that way especially, I answered her that I was.

I thought it would be the fast answer, and I know my own history with “weaknesses” in this system. As I told her, it has never really worked right.

Truth be told, it could be both of us, either of us, or neither of us.  We never needed to know so we never found out.

And we will never know for sure.

I am a believer in the Divine Plan.  Not all of us are destined to be parents.  Our “talents” lie elsewhere.  Aunts. Uncles.  Animal rescuers.  Community volunteers.  Foster parents.  Caregivers.

We have the love for caring, it is just in other areas.

If we had been meant to be parents, we would have been parents.  I believe that.

Just because we never had two-legged children, only four-legged, doesn’t mean that I never thought about it; never wished I had had a baby of my own to hold as I would pass back a friend or family’s newborn child; never talked about baby names (there would never be a Billy, Jr., Jr. I was told.  And that is a family joke, we know he would have been a III had we gone that route); never wondered what it would be like.

I wasn't devoid of that feeling of wanting one.

I just hid it better, I guess.

And, I guess, because I am a believer in the Divine Plan I was content with living Life que sera sera - what will be, will be.

I didn't obsess over having a child.  I didn't ache to have one.  In the want vs. need discussion, it was a "want" not a "need".  I know for many women that ache is very physical and very real.  For me it was more of "nice if it happens".

I know some people see this situation, and some have even said, you put your career first.  I don't think that's fair, either.  I've never had burning desires to be the corporate CEO/CFO or managing partner of an international firm.  But I do have a pretty darn good work ethic and I have always done what my employers asked of me - travel, long hours, weekends.  Some of that, I am certain, contributed to the lack of children in our home.  These people I worked for were paying me good money to do a job, and I did it, without questioning or complaining (much).  I felt like I owed them my best.  The choice to have a career was made before I had a husband and I have always known that Billy respects my work and the way I work and just accepted that part of my personality.  It has never been an issue.

I hope, though, that I can be viewed as a person who made the very best of the circumstances in which she found herself.  That I can be a role model for other young women for whom motherhood is not a part of their personal puzzle.  To show that it is okay to not be a mom, that we still have much to contribute.  We aren't less than, we are equal to.  And we don't have to be the devil in high heels to be successful in our chosen fields.

We can still love, nurture, care for another creature or human being, just differently.  Wake up on the floor holding your dog that has been seizing all night, or, better yet, wake up to find your husband on the floor holding your dog that has been seizing all night so you could sleep because you had work, and tell me that that act is not "maternal".

I know those of you reading this would never ask questions the way this woman did (side note, she had no children because she had never been married - couldn't find a good man), and I do, deep down, feel like she had some medical curiosity that was fueling this, but sometimes it is just the simple question "do you have children?" that actually starts the ball rolling for the person you are asking.  The anxiety starts up (what else will they want to know), the worry (does this change the way this person will look at me going forward?), the self-doubt (is there something wrong with me?  should I feel differently?).  And once that spiral starts, sometimes it takes a while to pull ourselves up and get back on the path with our heads up and chins out, facing the day again.

For the most part, we can handle it.  Just make sure we are fully rested, fully caffeinated, and not overly grouchy before you ask.

Timing is everything.

Tidal Waves

We were watching an episode of “The Closer” the other day.  No, it’s not my favorite show and I think Kyra Sedgwick’s Georgia accent is more than a little thick, but it’s an easy watch and not too tough to follow.  (Side note, this show totally went downhill when it became “Major Crimes” after Kyra left – totally unwatchable.).  In this particular episode, a young man, befriended by Deputy Chief Brenda Lee Johnson’s niece (who is staying with Brenda and husband FBI agent Fritz Howard for a few weeks) dies of gunshot wounds.  Wrong place, wrong time.

The niece in the show reminds me so much of my own niece, not only in appearance but in actions.  Brett would totally be the young lady sitting next to a new friend, trying to make him feel better.  The victim is drugged up on morphine for his injuries and everyone is waiting for his mother to arrive from Honolulu, even though the doctor has said he will never survive the three hours it will take for her to fly in.  Ultimately, the victim is conscious for just minutes and mistakes Chief Johnson for his mom and, rather than correct him, she tells him she loves him and he was no trouble to raise and all the things he needs to hear to pass peacefully.

And I have huge tears rolling down my face.  I haven’t had enough sleep or coffee, or both, and the tears are starting.

Deputy Chief Johnson steps out of the room after the young man dies and Lieutenant Provenza is standing there, waiting.  He is a member of her team.  As he tells someone he calls, it is 4:14 am, and he is there, dressed - in slacks, a sweater vest and a sports coat.   And as Deputy Chief Johnson is trying to control her emotions he offers her his clean, white handkerchief.  Just in case she needs it.

And I lose it.

Billy looks at me, somewhat quizzically, and says “you know it is only a TV show, right?” (Side note 2 – I have come a long way in this.  My mom and sister used to cry at Kleenex commercials or “Little House on the Prairie” and I would have zero emotion.  Now, I feel.)

Yes, I do.

But what Billy doesn’t know is that my daddy always had a clean, white, handkerchief.  He was always dressed if he was out of the house, even if it was the middle of the night or early in the morning.  He was always there, if you needed him to be.

At that moment, Lieutenant Provenza was my daddy and I was hit with a tidal wave of emotions.

You’d think, after so many years, that you have everything compartmentalized and smothered deep and something as simple as a plain, white, handkerchief would not reduce you to a blubbering mess.

But it does.

 And you can’t stop it.

All you can do is let it wash over you and then carry itself back out into the ocean of memories that you keep at a distance.

Billy has learned that this happens, sometimes.  I can be standing in the kitchen, crying, because the grill bought back a memory or the thought of using BBQ sauce reminded me of his homemade sauce or any number of things that can hit when I least expect it.

But, like surviving in the ocean itself, you can’t fight the wave.  Your best bet is to let it wash over you, and then swim counter to it.  Not against it, that will never work.  But across it.   Let it hit you, but not take you under.

Working to survive it, but not to fight it.

Because in the end, the survival is what makes us what we are.  And my daddy is very proud of who I am.  Losing him changed me, in so many ways.  But they would be good, positive, changes.

So I swim.  Against the wave.  Fighting the crest.  Not allowing myself to go under.  But welcoming the sweet tears on my face that remind me that I loved, I lost, I feel,  I survived, I thrive.

I don’t drown.

The “Freedom” of Speech

This country was founded on, among other freedoms, the freedom of speech.  The ability to say you didn’t like the ruler (aka King George) and not have to worry about losing your head, literally.  Or to disagree with the local law enforcement without the fear of being arrested.

In other words, to speak your mind without fear of reprisal.

Except, in today’s electronic, totally connected, world, do you really have this freedom?

The news is full of stories of celebrities, and regular folks, who say something “controversial”, only to discover that they lose their jobs/shows/position.

My family believes in voting.  We voted every single time there was an election.  Billy has always been interested in politics.  Election night was right up there with Bowl Day for him.  When we married, we were on different ends of the political spectrum, which made things very interesting, to say the least.  When we moved to Natchez, a much smaller community than we had ever lived in, our political freedoms were tested on a new level.

Never, ever, had we been “sign” people.  Even growing up, we almost never put signs in our yard (probably because they would mess up Daddy’s grass), that I can remember.  Our political views were strong, but they were contained within 908 E 57th Place.  Billy and I never put up signs.  Probably a waste of space since we would cancel each other out.  But when we moved to Natchez I was told, muddily but still clearly, that because of my firm’s position in the community, publicly supporting one candidate over another in local elections was discouraged.  We audited or worked with many local governments – municipalities, counties, school districts, special districts – and if we supported the winning candidate then our continued work would be looked upon like a “favor” and impair our independence; to support the losing candidate would almost certainly cost us the work.

A lose-lose, if you will.

One local election, this caused some problems in our household.  Billy wanted to support a particular candidate, and had even told him (without my knowledge) that he could put a sign in our yard.   I came home from work that day with a different opinion.  It caused a quite a rift when I told Billy I didn’t want to do that.  It might have gone over better had I not given him the “why” – because my boss said not to.

As there were three candidates in the race, I couldn’t even acquiesce with a sign for the opposition and pretend that no one would know whom I supported.

So, did I have Freedom of Speech?  Sure.  That is guaranteed by the Constitution.  Would it have been smart to exercise that right, probably not.   Could I have been fired from my job for doing so, no.

Which circles me around to this question – in today’s world of Facebook, Twitter, Instagram, Snapchat, and so on, where is the line between work and personal?

I posed this question, in a way, during the NFL protests.  Many people believed the football players had a right to take a knee during the anthem in protest and it was fine.  It was their freedom of speech to express themselves this way.  Others took the stand that they were not protesting on their personal time but during work and that was not fine.  Work is work, personal life is personal life.

Employers do have a right to set behavior standards, same as they do dress codes or other policy and procedures or even morality clauses in contracts.  You accept the work on those terms and know it going in.  We recently had a situation where we had to remind our staff that their work email address is simply for that – work related communications.  To use it to share inappropriate jokes or political opinions or make personal comments to someone is not allowed.   Some even go so far as to say to do so is a “theft of company resources”.  When you send an email with our domain on it, it infers we, as as firm, are supporting whatever you have said.

But we are all connected, all the time, every day.  When I open my iPad and go to the email icon all 5 email accounts I have are right there is one place.  It would be easy to inadvertently use the work email instead of a personal one.   It is up to me to pay attention to what I’m doing.   If I post something on Facebook, even though it is my personal page, I am cognizant of the fact that everyone in Natchez knows where I work and that I am a business  owner in the community and I try to stay middle of the road, publicaly.  Just like growing up, my views on everything do not need to be broadcast to the entire world.  They can stay contained in the four walls of our home.

I raise these questions in light of the cancellation of Roseanne Barr’s rebooted show, “Roseanne”.  Top of the ratings, doing well with the audiences.  Then she uses her personal Twitter account and puts out an inappropriate tweet (no one can really dispute that point) and her show is cancelled.  She was fired from her job (along with her castmates) for something she did in her personal life.

Is that right?

 She wasn’t using corporate resources.  It didn’t happen on the set.  It was, technically, no different then if I tweeted out something from my house on my personal computer.  So, if I had sent that tweet should I be fired?  Most people would just say it was a stupid thing to do, and my partner would be very upset with me,  but I don’t think he would, or even could, terminate our agreement over it.

But we would both fear that the local community would find out and it could cost us business that way, which could ultimately lead to a change in my work status.  And that is how I think it should be.

If enough people were outraged by Roseanne’s comments then they would stop watching the show and ABC would have cancelled it anyway and the end result probably would have been the same, but the process would have been different.

Other shows, even shows on ABC, have had their stars make controversial comments and they were neither fired nor their shows cancelled.  And in one case, the offending comments were made on air, during the show.  Work life, not personal.

Is that right?

No football players were fired for kneeling, no teams were moved to other cities, no one was even disciplined, really, for expressing their views.   But someone else loses a job, and costs others their jobs on the show, just for making one stupid comment.


We live in a world with a lot of multiple standards.

And the lines are blurred in this digital age.  Are we ever “off” work?  Do we have a separate personal life at all?   Does what we do in one aspect of our lives always affect the other aspects?

I don’t know.

I know one solution is to “unplug”.  I have several very good friends that don’t post, tweet, like, love, favorite, or anything else.  Their digital footprint is minimal.

But I would miss so many of the people that I have caught up with over the years.  I am in touch with distant family and it makes me feel the right kind of “connected”.

In some ways, Life was easier when I was growing up, before the digital age.  But that is the topic of the next blog post.

 I think what I find the most troubling in all of this is the lack of clarity or consistency in what is wrong or right.  Offend Christians, nothing happens.  Offend Muslims or another religion or even an Atheist, you’re vilified.   Offend working class Americans, nothing happens.  Offend illegal immigrants, you’re a racist and an elitist.

How is that right?

We all have the same Freedom of Speech.  We all have the right to exercise it or not.  But we do not all bear the same repercussions when we do say something that someone else doesn’t like.

So, is speech really free?  Does it not sometimes come at a price?

I know the easy answer is let’s just all try to get along and quit with all the snapping and sniping and ugliness.  If no one ever made these inappropriate “jokes” or comments (that they all apologize for after the fact) or took a knee or burned a flag or any of these behaviors then we would not be having this conversation.

 It doesn’t mean you aren’t free to say it or do it, but maybe you can think of a better way to get your point across.

Think before you speak, post, tweet, snap, like, or hit send on that email.

I also know we don’t live in a kumbaya world and that will never happen.

But a girl can dream, can’t she?

Another freedom that really isn’t free.