There's that thing about not having any control

I have a confession, I've had a secret plan all along. I had a big reveal planned. I've told some of you that I haven't had any seizures so far this year. I was really stoked for a "6 months no seizures" sign to post on my Facebook page and the Epilepsy Support Page.  It's actually a really exciting moment for anyone with epilepsy, and in many situations it's the beginning of freedom, the moment you can drive, the moment you are considered "controlled" the moment you are considered "healthy."

I wanted that for myself.

I wanted to share that with you, and post that in a huge celebratory way.

It's how this story was supposed to go.

But...(I think you already know where this is heading...)

Last Tuesday night, after going almost 5 months without a seizure, my body betrayed me, and it happened.

...

Randy and I both tried to talk ourselves out of the negative spin as fast as we could - we unwound ourselves as fast as we could. But my tears couldn't keep up and the thought that I failed and my plan failed and retracing all of my steps, my diet, my sleep, my stress, everything.

What had I done differently?

How had I caused this?

My plan was ruined.

My big reveal spoiled.

I kept thinking I was going to make it to that "easy place" you know...It's that moment where you ride your bike, you are at the top of a hill right before you start going down  I also think about it like a runner. There's that runner's euphoria and at a certain point in a long run there's a high and it carries you. You've done the hardest part, and then there's a moment where you get a lift and you get carried, there's something of an "easy place" and it's where the work pays off...

I thought that I could control this, I thought if I put the work in, I'd get there.

I think that's called bargaining, it's definitely trying to control something I don't have any control over. I've thought about it over the last few days. I'm in a better place and I'm able to focus on what I've gained so much more than what I've lost. This seizure was another reminder that I can't put life on a timetable. I've always tried to plan so many things, pretty much down to the minute.

I've focused on the positive, and sometimes I think it's because I thought there was this reward at the end, like if I was positive then I'd get to "healthy" or that epilepsy would be resolved. I thought I was smart enough or tough enough or just stubborn enough to work through this and it would be done, and I will have made it.

Sound familiar? I think back to my very first post.

I'm a fan of the theory that if you don't learn from past mistakes you'll often repeat them.  I'm not saying that it's why I had a seizure but it's definitely a moment to take a look and figure out my expectations.  Am I living with this? Or am I trying to fix this? I am not superhuman! I can not cure all things. I can not Type A everything into happy.  In fact, I think the whole point is that I was Type A'ing everything into frustration and disappointment (disclaimer - not all Type A people do this, I am just talking about myself.)

So, now I'm starting over, not with a count, because - well that is sort of pointless. At this point I can drive a little. No one is taking my license away right now - today, who knows about tomorrow and I'm getting to take my kid to the library and to the park. I'm starting over with expectations. I guess this is part of my life now. It's like a freckle on my face I'm going to have to get used to looking at everyday now.

Stupid Epilepsy.

I'm sorry (but only kind of)

I'm a liar. No, not a liar. I'm just confused. Well, not confused, I'm on a journey, right? I know that sounds so hokey, and I cringe as I go back and read some of the flowery stuff that I've written. Some of it was soaked in and dripping so much with emotion that I just couldn't wring it out to get down to any sort of substance. But that's okay. It's where I was at, I'm okay with it. I'm also okay with cringing and having a slight knot in my stomach, much like looking back on my wall bangs and the white turtleneck I had to wear in my band photo in the sixth grade.

Sorry - No pictures here...way too much of a cringe.

Can anyone explain to me who decided that white pants were a good choice for middle school girls for band?  I mean there were certain biological events that were imminent and embarrassing - weren't teachers smarter than that? "Who were the ad wizards that came up with that one?"  Probably the band teacher - I didn't like her much. I'd probably still be playing something if she hadn't discouraged me and made me feel terrible and shamed me in front of the entire band several times.  Ugh ... plus those white pants!

Tangent, sorry.

So back to why I'm a journey-liar-ish-emotional-non instrument-fear of white pants wearing person...

Several posts back I mentioned very clearly that at 35 years old I had no idea how to be happy. Over the course of this whole whale riding of an experience I've spent a great deal of that time underwater holding my breath.  But recently, I've come up for air, and it's felt great to breathe again. It's not an answer to the question but a place to begin.

I preface this next part with a STRONG EMPHASIS THAT I AM NOT TALKING FOR ANYONE ELSE, JUST FOR ME: (But maybe someone has another issue - I think sometimes that if we could just find a way to get beyond these limitations - we'd all be floating along...) okay getting to it...

One thing I discovered very quickly as I came up for a breath and I started to get a little energy back was that, despite some other lingering serious issues, I was able to do some exercising again. This time exercising felt different. It felt different because I was so much lighter. I did not seek out losing weight at first, but it was a byproduct of what happened to me. I've mentioned that from my very first seizure I've lost a lot of weight.

Also, no pictures...I don't think it's important to post that because it's not about appearance it's a personal thing.

Although I'm not entirely sure, but it's possible, that being a little overweight may have stopped me from doing things that I enjoyed doing when I was younger and a little leaner. Anyone else know how that happens? You gain 10 lbs one year?  Then 5 the next?  Then another?  And it just gets away from you...it's like the real you starts slipping by and then before you know it you look and feel like a different person.  

I used to be fearless and brave. I used to dive into things, jump off of things, go rock climbing, horseback riding - you name it, I never wanted to say no, If it was an option, I wanted to say yes.  But I realized slowly over the years I started to say no, this confident girl had turned into a shy woman, not just because of the weight - although maybe that is how it got started but soon after it became a learned behavior - it stuck.  I still had some bravery in me, mind you, and I still had fun, but it wasn't the TRUE ME, the AUTHENTIC ME, the way I was before. I lost something as I was gaining something as the years went on.

These days I carry my son around, and I often remind myself of some of the weight I used to carry around. Not because I feel as though I want to punish myself because of how terrible it was, but just a reminder as a symbol of how I felt weighed down, and held back. It's really not easy to carry him everywhere! I'm really glad he can walk now!

Ok, here's the other thing I realized, I think people mean what they say. Both the good and the bad. So often I've given people the benefit of the doubt. Especially in my career. I'd let people walk all over me and then defend them. It's was an exhausting part of my work. But it was one for all and all for - well honestly, it didn't always work both ways.  People would look me in the eye and say horrible things to me, but I'd go to work and forgive them and move on.  I kept allowing the negative things to continue, I didn't think they "meant" what they said I thought that it was a facade or a mistake.  And a good bit of that Pollyanna-esk attitude is helpful, but eventually you have a responsibility to yourself to reach a point of understanding that they really are who they are telling you they are, it's time. I've definitely missed that time...several times.

But there's an upside, right? If people mean what they say, then when they say something good, they mean it too. So when they say, "come to my lake house,"... then you should go to their lake house. Don't say, no...and brush it off.  You go to their lake house! LOL. In my life, I tend to walk away from generosity, but offer it. I was discussing this with a friend recently. The funny thing is we are the same, we do the same for each other, we are more like family then friends.  And that is what family does, they are open, they share, there is no "even -Steven" no expectations, just generosity, and openness. There are no secret intentions, no exchanges, no expectations. I get annoyed when people expect things from you because they did something for you, "Well, I lent you this, so you should give me this?"  Are we friends or a library?

We went to our friend's lake house a few weeks ago and all of these things were encapsulated.  Not only an amazing time sharing in the generosity of others but I got to be a kid again, kayaking, jumping in freezing cold water because I felt brave again. I rolled around in the dirt with sweet and friendly dogs. I saw my sweet baby boy enjoy the outdoors just like his Mom. I daydreamed about the first time I would take him fishing, his first time on a boat, his first time camping. And my family surrounded me.

I was overcome with happiness. So, forgive me for lying, I just forgot, I didn't mean what I said.

Timehop and my never ending love of the Neverending Story

So, things are better. Yay. Most of the time:)

Definitely on the right track. I should be happy, and I am, but sometimes I'm scared. It's not that I'm not happy, I'm thrilled, I'd take scared over sick and zombie-like any day of the week, and the scared feeling gets less as the progress gets better...but it's still scary.

You know that Timehop app? Well, that's an app designed for people who don't have scary stories,  don't have heartache, haven't gotten sick, haven't lost a job. (and beyond for sure, scarier stuff that I haven't had to deal with, like cancer, loss of a child, and worse, things I can't imagine and don't want to).

I'm now convinced that people with scary stories who originally naively downloaded that app have unfortunately unleashed a beast that is a ticking time bomb of the upcoming daily (and painful) reminders of all the stupid crap they've been through during those times.

But that's just the glass half empty version of the app right? What about the flip side?

If you have that silly app (which I do by the way, so I'm not app shaming you), you can also see how far you've come in a year or 6. I'm not talking about myself here necessarily but...Maybe they've lost 100 lbs? Run a 5k? Maybe a marathon? Finally made the move to the other side of the country? Kicked cancer's ass? Pulled themselves out of a terrible relationship? Changed careers? Finally got fertility treatments that worked and they are holding a sweet baby and now looking back on those distant struggles with a sigh of relief that it was all worth it. Were they were braver than they thought they could be?
Cue empowering music and montage of inspirational pictures slideshow here (Maybe Sara Barielles Brave?) - kidding.

I think one of the biggest flaws we have (as humans) is that we underestimate our ability to get out of the muck, take a big ole fat step out, scrape off our shoes and keep moving.  I think we focus so much on where we are we can't see beyond, we get blinded by the now.

In a past blog, I mentioned one of the greatest movies of all time (okay not really) The Neverending Story where Artax (the horse) dies in the swamp of sadness. Part of the reason people (and apparently horses) die in the swamp of sadness is because they can't get beyond their own heads, their own feelings to see beyond.

I have definitely lived in this place several times in my life. I've made bad choices and I've let things overwhelm me. I've felt sorry for myself, and what's weird about all of it is that the foggy nothingness has always felt the same. I've chosen the swamp of sadness and I can tell you it really didn't matter how severe the issue, perception was the reality.  My length of residency there was determined by how long I planned to stay focused on the muck not necessarily the issue. 

This time may be different. I don't know. I have good days and bad days. Some nights I have really bad dreams and they shake me for the whole day, some times they shake me for the week. I have dreams that I've missed meetings at work (my old job) and then I realize that it's all gone, no meetings to miss, no work to go to the next day. Sometimes I have dreams that I'll have a seizure in a crowd of people and everyone will laugh at me. And sometimes I wake up and cry. I get mad that all of this was "supposed to be over" it's supposed to be ending.  This was not supposed to be the "neverending story of struggle".  Whatever the anxiety, however I fear there will be betrayal, I get up and keep moving, I keep moving out of the muck.

There's a new reality in my life. I have epilepsy. I'm not going to die from it, but I have it. It's not going to dramatically change my life anymore, but it did. It took a lot of things from me. It took my job, it damaged some friendships. It put pressure on my marriage. Those are real things. I'm not going to sugarcoat it and I'm putting it out there because I think it's been helpful for me to be real and not hide from my truth. There are pictures of smiles and a cute kid and life, but life is real and pain is real and anyone who thinks Facebook and status updates are real, well frankly, you are very confused. My life is changed forever and I am changed. But I survived I am strong and it's the new normal. 

I also have a new joy. I had a serious medical scare, and it turned out it was only epilepsy and I'm not going to die from it. I am fortunate. The damage caused by those awful seizures and issues are hopefully behind me, great news!  Epilepsy isn't great and my life changed, but I've heard from and seen friends I haven't spoken with in some time. And that's kind of like hitting the friend jackpot all over again.  I've spent priceless time with my son, I saw him walk, heard his first words, played with him on the playground, stored up hugs and kisses galore. There's a yin and a yang to this time that I could never come close to comprehending at the beginning. 

At 35 years old, I'm a present participant in my life, I'm getting healthy, I'm safe and loved. I can't go back to my old life, and honestly, I don't want to. I still tear up when I think about some of the happy times I used to have building playgrounds and walking through the halls of my old job. I miss the freedom I used to have where I didn't worry about my body betraying me, and sometimes I'm sad about the hearing loss. But I've found a new joy, and a new hope that came with this suffering. And a new spiritual connection.

About a month ago I was looking through the Timehop app when I started to cry, I thought about the pain that was going to come in a year as I looked through pictures of last July/August when all of this happened back when everything hit really hard. I thought about deleting the app, I thought about hiding from the memories and trying to escape from it. But, as silly as it all is, looking back and facing it is helpful. Thinking about the transformation, even at this point, the changes and the strides I've made, the path I've chosen to take at this point. Looking back on those pictures where I suffered, now I can't think of anything more beautiful.

There's continued hope in healing, strength in struggle, and deeper compassion you can offer to others from experiencing that suffering.

Plus I've made a lot of ridiculous faces over the years and Parvesh has dressed up in ridiculous clothes and who wants to miss that?

Light

Things have been difficult. No lie.

Below are some photos from right before everything started, this is what I looked like:

Of course things changed this past summer...


And then it hit, and this is what I looked like:




















Sometimes a picture speaks a thousand words. I haven't taken many pictures of myself recently because I've felt as though there has been a light that has left my eyes and my face. It's a comment many people have shared with me. "You look a little bit better, but I can see it in your eyes."

I know that no one means anything negative and I have tried to focus on the positive, but it's been hard to deny that all of this experience which has taken it's toll on so many things, hasn't also taken it's toll on my face and my soul shining outward from within.

My husband and I recently decided that through all of this hard time we needed time to reconnect. We struggled through what that would look like. My parents came out and stayed with our little guy to give us a weekend to ourselves.  Baby Boy is almost 15 months and I've never been away from him unless I was in the hospital. Without a ton of details, (to be honest I don't want to be critical of the original plan) - but our plans got derailed and changed.  We found ourselves in Chicago, bags packed, car parked and in a bit of chaos. We were stuck in the midst of a decision of what to do.  We made a commitment to spend time together, but the original plan just wasn't going to work.

Here's what I love and hate about my husband (isn't that always the way?) He makes a decision and commits so fast it makes my head spin...I like to ponder, run it over a few times. But, he won and we quickly switched gears and went home that night. We took out one set of clothes from our suitcase and put in another set of clothes into our suitcase and got a quick night's sleep. We woke up found a hotel and drove to Starved Rock. Just like that, I had no time to ponder and no time to spend my typical "Barbara think way too much about it time." Just be. Just drive. No worrying.

There's a picture that we posted on Facebook and it actually looks like me pre-drama. My eyes are bright and I'm alert and happy. We were outside and birds were chirping and we walked hand in hand.  I remembered what fun was! And I remembered how EASY it was to have fun with my husband, how funny he is and how well he listens. Away from everything we were able to talk about our future and our past and how we fought through the last few months and that we were hopeful to be rounding the corner of this...hoping that there wouldn't be a relapse-but even if it happened, that we were still so happy with the progress.

It was like taking a step out of roaring rapids from a river before jumping right back in. We caught our breath, we danced around a fire, we ate great food, and got our strength back, knowing full well that it was temporary and more hard times were waiting in the morning - we knew we had to jump right back in. They weren't the same hard times, some things were getting easier. Now we are facing the aftermath, picking up pieces, deciding how to handle the "moving on" part. The new clarity or lack there of...

After coming back I thought of nothing better than supporting my husband with something he loves most, his friends. We planned our last evening away with his friends, which I helped to madly coordinate via text on the way home. They aren't just his friends, they're our friends. Friends who have become family. During this experience they've all visited, helped, asked, offered, been there. They are my family too. I know why they are so important to him. Oddly, I ran into another very special friend while we were out as well, a previous coworker-I actually almost asked to join us!  It was just fortuitous, as I move forward and realize the people who really made an effort that didn't even know me very well.

I'd like to tell you this is all over, I can tell you that I got good EEG results. Yay! But, there's a little more to the story, and I don't even know what that is yet.  Just know that I am always working on it, I'm truly finding peace in my everyday.

When we were "hiking" in Starved Rock, there was one thing I noticed during our walks surrounded in nature. (I shared this with my husband, but sometimes I think he thinks I've lost my mind a little sitting at home, all in my head getting all spiritual and growing and stuff.)  Here's what I realized: all of the plant life, the flowers and trees that were dead there, (I was looking at them all on the first day of spring), all of those dead leaves that were there under the piles of snow that have now resurfaced. Everything was laying there just waiting. It's all been in waiting mode, waiting to come back. It's been building back up-gearing up for the next stage. Some of the plants won't come back at all, they will die, they won't have enough life to make it. Some of them won't be strong enough. But some of them, somehow, will be stronger than ever, brighter than ever, greener than ever, and bolder than ever.  The winter will have done nothing to stop them from being more than than they were before the winter came...

This is what I aspire to be.

Trading Spaces with TLC

If you've been following my story, I'm still waiting for results from an EEG. I'm hoping that those results will prove that I am on the right track. That will be really, really good news, and it's the only news I'm planning on getting :)  I should know something more some time this week or next. So we've been passing the time...

We recently moved my son into a new room.

We realized a few weeks ago that when my husband got up for work, even with the white noise machine we continued to use from when Brock was an infant, Brock still had trouble sleeping while Randy was getting ready in the mornings.

So the 7AM wake ups were turning into 6:45AM wake ups, then 6:30AM wake ups, 6:15AM...you get the idea. Well, his bedroom is located directly next to ours and also backs up next to our TV. Now that he's become a "light sleeper" we figured it was time to move him into a room that's a little farther away and also a little bigger. We figured it would make it a little easier for us to move around. When we approached this project we noticed there were several things in his room that were dirty and needed repair and/or clean-up. And the glider, oh the glider!  Its the glider we first gently and lovingly rocked our newborn baby boy in. Recently, it had several screws that popped out. This continued week after week for the last couple of months. The thing had become a death trap, I'm not sure why we risked our lives slowly rocking our son and ourselves night after night in a soft and sweet milk-drinking Russian roulette of a chair...but we chanced it. It was past time to throw it out.

But trading spaces was going to be a huge challenge. When we moved into our new home we (I) wanted a "very important" office to do my "very important" office work at home. Most of which I ended up doing on my laptop in my bed at all hours of the night. The desk kind of ended up being a mistake.  Have you ever worked so hard and long on your laptop in bed that your legs get really hot and your sheets stick to you and your laptop becomes a fiery furnace of pain?  You'd think I'd walk the 30 feet over to the giant 1,000 lb desk we bought a year ago, but instead I tortured myself with budgets and branded my self with the backside of a Toshiba.

So, we knew we wanted to move him, but that desk sort of sat there like this ominous L-shaped impossible task. We knew we had to take it apart but were afraid to...

So we waited.

Finally, we decided it was time. We had enough of the early wake ups and the glider had become crooked, it didn't rock anymore and I think even the baby was afraid. Plus Randy's mom had to put him to bed one night and it was bad enough we subjected ourselves to the death trap but we really didn't want to risk anyone else's life, so it was time.

We started Sesame Street one afternoon and just like anything else we faced together Randy and I approached it completely differently. I wanted to draw a diagram and move things 1 by 1 and figure out where each piece was going to go and Randy just wanted to move things and force them into spaces by trial and error and brute force. Randy won out. But I got to take apart the desk.

I won't bore you with the rest of the details, but I will say that like a lot of things in life, it was all much easier than we expected. The desk was 4 screws. We did have to take both doors off the hinges but we easily slid the desk right into the other room.

When his old room was empty, it was dirty. But (just like a sentimental mother would say) I said to Randy, "Remember when we imagined a baby in here? Remember how nervous we were? How scared?"  I remembered that the room was a different color, there were no curtains to darken the room, there were no decals on the wall, no contraptions for holding diapers or hanging pictures.  Everything in the room had no purpose before. Somehow, haphazardly as new parents, we made it all work perfectly. Now I couldn't imagine the room for any other purpose, even with it empty.

Then we moved his furniture into the new room.  It seemed an odd, almost uncomfortable. It was a bigger space and had more room for things, but awkward. Once we moved his furniture around we noticed that some of it was weak in some spots, it needed to be tightened, we hadn't noticed this before, until they were moved around. Also, some of the pictures and figurines didn't make sense in the new room, so they didn't make it in and some of the things on the wall didn't go either.  But the core items moved. They started to make more sense in the new room, actually they made more sense in the new room than in the old room and new ideas started to fill my head about his future, how his crib would become a toddler bed in that room and then a double bed and then I could imagine a chest of drawers. I could imagine a boy seated at a desk doing his homework and that sweet babbling voice would say words and full sentences. The boy would grow here...and it all fell into place and it all made sense.

When Brock took his first nap in his new room (you guessed it) he did not like it. He hated it!!!  And I think Randy would have preferred that I shut the door and let him cry and let him get used to it. But, instead, I picked him up and I comforted him. I walked him around and I told him, "This is yours, all of this is yours, this is your crib, these are your clothes, these are your toys, your changing table, your books."I'm not going to say, he completely stopped crying and went right to sleep, that would be a lie. But there was a peace that came over him when I was explaining and he saw his things around the room. As much peace as a 1 year old can have...

When his room was empty it made me think back to all of the possibility I had when I moved back to the suburbs. I remember being scared. I remember being worried, having absolutely no idea how any of this would work out. I was pregnant, about to start a very big job. Just like the pieces of his room and the colors on the wall, once I was there, it all fit, it all made sense, it all became perfect in a way I could never have predicted. Even the decals on Brock's walls, at first I didn't like them, Randy wanted them, but when I peeled them off, it was difficult, I had grown attached, but after I started peeling the first or second one I couldn't wait to get rid of them all.

Whenever you move furniture I find that it weakens it. The hinges, the nuts and bolts. The legs on chairs and tables. I feel the same way about some changes in life. I think that when we go through a major change there are parts of us that get worn, there are pieces and joints that get damaged, little scrapes and scars that we try to cover up with wood markers and couch material patches, but not everything can be covered. At the same time, we find some weaknesses that we can repair, some extra parts that we DO figure out where they go, some nuts and bolts that DO tighten things up, some furniture and tables and chairs that we CAN make stronger. And I think that change can do this too.

I've been told by some very intelligent people that I thrive during change, that I am unafraid of change. And if that is true then this has been quite the test. I've fought this change, much like Brock cried and screamed when I put him down for a nap in his new room. Worse! I've been kicking and screaming, yelling, getting tattoos, scrambling for any source of comfort except for comfort in the fact that I am weak and broken and that I can be completely taken apart and then rebuilt. And at the same time, that core, those core pieces remained.  And God new that the whole time...

I didn't want to see it. My heart never really changed. I think I was scared I would change. Through all of this there were things that were not going to make it, pictures that weren't going to get hung up on the wall in the new life (friends that may not continue on with me), there were things that needed to get repaired, screws tightened (flaws that needed to be revealed to me, changes that needed to be made), room for new pictures (new friends, or friends from the past that were coming back into my life), the glider that was going to get thrown out (the job I was going to lose). In the new room, in my new possibility, there is a vision for a new start, just like I had when I moved to the suburbs 3 months pregnant in July of 2013 full of hope and possibility and still very much afraid. God was/is there holding my hand walking me around showing me all of the ways I am blessed even on the days I resisted and cried. I'm amazed by his grace even in my own weakness.

By the way. just in case you were wondering, Brock is sleeping soundly each night in his new room. He still wakes us up promptly around 6:30AM and the move has had no impact on the early morning wake ups. If you plan to stop by, feel free to bring a coffee with you!

A talk from Dad

First a few things...

There are several parlor tricks that I can do now.

If your phone is ringing on my left side, I always look to my right. Bad joke, I know. It's not funny to be mostly deaf in one ear, but some days I feel like laughing about it.

I have selective hearing.  If I don't want to listen to you, I can turn my head and pretend I don't hear you. I know this is dishonest and slightly rude, but I look at it as a temporary perk, as I suspect people will catch on.

I've lost about 60 lbs from my first seizure weight last July/August. I'm pretty sure that's the size of a 1st or a 2nd grader. Some days I laugh about that too. I mean, it would have been nice to lose that weight awhile ago. I'm about the smallest size I have been since I was 20 or so. Although jeans have changed - a lot. Now you can sssssttttrrrreeeetcchhhhh into a size if you really want to. But I'd say I'm pretty legit into that size now. (The integrity of the fabric is still intact!)

I used to space out into another dimension and pretend you aren't even here. It was kind of a nice break, I have no idea where I went or what was there, but I'm sure it was some sort of crazy other dimension where Charles Wallace and Meg went to save their father from IT.  A Wrinkle in Time, anyone? Buehler? My bother used to read me that book.

None of this is part of the suffering, all of it is the humorous glass half full stuff. And recently it's none of the crap I've been writing about. I have about 3 really, really long blog posts about doubt and darkness and all of the junk that clogs up your heart and soul and I just realized no one really needs that. I don't need it. I went to re-read it and I even stopped.  There's nothing new there, nothing helpful, nothing inspiring, no hope and I figured it should just sit there.

I have been in the funk. I recently let some stuff really get me down. And I say that I let it get me down, because it's definitely my fault. This is stuff I could have ignored.

So today I talked to my dad.

You may or may not know that in my teens and early 20's my dad was really sick. I mean quintuplet laminectomy (Laminectomy is surgery that creates space by removing the lamina — the back part of the vertebra that covers your spinal canal. Also known as decompression surgery, laminectomy enlarges your spinal canal to relieve pressure on the spinal cord or nerves), brain surgery for an Arnold Chiari brain malformation (Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward) sick. The kind of sick where I never imagined he would ever be able to walk me down the isle. But, as you can see, he did.

Unfortunately, or fortunately, depending on how you look at it,  he's my current expert on suffering and recovery.  The main difference is that he was sick for more than 10 years off and on. He recovered and got sick again several times. At one point my younger brother and I used to joke that the only thing my dad needed to get better was another surgery because each time he'd get a little bit better and then get worse again.

My dad has lost a lot. He lost his job, he lost money, he lost physical strength, years of his life, and he's still on disability today. My mom and I had to take care of him for several years, feeding him, making sure he showered, and at one point he was in a hospital bed in our living room barely able to function.  Once a doctor told me he had only 6 months to live.  Obviously, they were wrong. I think the biggest loss for him is that he has very little memory of those years. He missed a lot. I feel his biggest loss was saying goodbye to his son and my brother. He has very little memory of his funeral and that whole experience, I'm not sure how much he was able to process or if he has any regrets...even though regrets aren't really his style.

I'm setting this up to tell you that he's my expert. But he's also my expert on positive thinking. Even when people say things to me over and over again, no one gets credibility like my dad does. Probably annoying for most, sorry. I guess it's a father and daughter type of bond "thing."  He has always been my chief adviser and sounding board. Unfortunately, my mom gets the brunt of emotional complaining, well because she's just more patient; my dad, not nearly as patient.

So, I haven't talked to my dad a lot throughout the process. I'm not really sure why. Maybe it's because I know he's helpless to do anything and I know it's hard for him to hear me in pain. Maybe I don't want to listen to him spout positive advice because I want to be miserable. I don't know.  But I started out talking to him about something completely different today and within that conversation he said something that helped...

But, I have to go back in order for you to understand why.

You see, when we were kids, there was something my dad referred to as the "expectation."  Whenever we did something good or great, he always expected it. There was never a surprise or a big celebration. As a matter of fact, I never really heard him get the least bit excited about any of our accomplishments unless he was telling someone else. He would explain that his kids always got the "citizenship" awards in class every year for being nice kids. He explained his kids always got straight A's. He explained his daughter always made all-star for softball, made the travelling soccer team and was a natural leader.  But we never really discussed this.  Instead, my dad offered up a different expectation for me...we often had conversations about what success truly was...nothing about accomplishments, something he mentioned about some Emerson quote about animals and kids and helping people. It was a nice chat and then we'd "car dance" to Paul Simon on the way to a soccer game. He almost always volunteered to be a coach even though he worked full time and put so much time and energy into games and activities to help us "get better."  (Although rather than getting better we focused on playing in the mud and talking about boys.)

Side note...anyone else wonder how our working parents did this???  How did they make treats, ran girls scout troops, coached soccer, make homemade Halloween costumes, homemade birthday cakes, built swing sets, put toys together, did home repairs themselves?  Were they superheros?????  And they lived on no money at all...no vacations, no extra cash, barely paid the bills and were desperately in love and still are.  I'm in pure awe of my parents!

Once my dad got a little bit better, he was never bitter. He had practically lost 10 years of his life, his wife had struggled to pay the bills and they had lost almost all of their savings in the process.  But, he was happy. He was ecstatic!  His friends were loyal, they had never left his side. Once he started getting a little better different friends took him out to lunch almost once a week, something my dad started doing for a gentleman in South Carolina for a while. He had a new lease on life and was not afraid to make decisions.  So they moved and bought a house down South.

So what does any of this have to do with me and where I am at?

I'm not mad about that expectation thing, but it did have one negative side effect. I was never really confident about my abilities. I was never really proud. I learned to fake it for interviews and for my job but I always worried about my ability to perform or achieve, even though I had in the past. I never took credit so I never really thought I could do it. I even came off as arrogant because I had to force it sometimes, but it's definitely not natural for me, I suck at it.

But today something switched and it was a good switch and I have thought about what he said over and over and over again. And he probably has no idea how profound a statement he made unless he reads this.  But he said to me, "You'll get through this, and you'll be better for it. And that will happen because you're you." And he said it again and again but in a different way. And I realized that it was one of the first times I think he gave me credit for making things happen for myself. He said it in a general way that it was because of my abilities that I would be better than I was before, that I would find a way to make it better. And I guess something just clicked. That he believed in me AND my abilities and that it wasn't just by accident. That it was intentional.

Someone else has probably said the same thing. I've probably said the same thing. But it doesn't mean as much, sorry. It means more from the man who sewed overalls for a 2 year old me (yeah he can sew too), it means more from the guy who screamed and encouraged me to run for the ball from the sidelines (we have video of this, it's pretty hilarious), it means more from the man who watched me struggle through every college course I took and wheeled himself in a wheelchair into my college and ask the woman for help because I was too depressed to continue when I was taking care of him. It means more because he got a nine year old girl up at 6 in the morning and ran figure 8's with her through the goal posts with a stopwatch to help her get faster in order to make the traveling soccer team. It means more because now he knows me, he's seen me through so much and will continue to do so until his last breath.

Only in the past couple months has my dad paid me a new type of compliment, (or that I've paid close enough attention to notice).  I remember when I got a really great job, I mentioned in one of my first posts, I thought I would be able to say to myself, "I've arrived, I'm here, I'm done," and take a deep breath.  I also thought my dad would be really proud that I bought a nice house and have a nice family with a nice car and a yard and a dog.  But the best compliment he gave me was when he said that he was really proud of me when I lived above a law office in Oak Park, living simply, hanging out with friends. He said that I lived like church mouse and paid my dues. He said he was really proud of me. That meant a lot. It's funny the things you think your parents want for you...the things you think they want you to achieve. But, it's the same thing you want for your child, happiness.

My dad will spend his last days in service to others. He's a good man and a family man. He has given me a great love for simple joys, Paul Simon and a respect for all living things. He yells at his dogs and he has a tendency to injure the same finger over and over again. But I won't hold that against him. He's a great dad and is working his way on becoming a really great grandfather, but hey, that's just the expectation.

What's Write or Forgotten

I have a confession to make to my ever-growing readership I've established, I think I'm at 3 people now, Google should start using me to advertise! (Thanks for reading Mom, Dad and Randy!)

Anyway, my confession is that this whole writing thing didn't start as a "pour my heart out - ask for help on my own because I'm that evolved" sort of thing.  Honestly, it was an assignment from my therapist.

Of course, she didn't tell me that I had to be so open and honest, or to make it public or anything like that. I decided to go ahead and put it all out there. But, yes, it wasn't totally a self-starter type deal "thing."

What I've learned in this process so far is that I have a really hard time remembering events. Not just because I've been through a lot of crazy stuff, but because there was an enormous amount of life that happened in a small amount of time.  At the very beginning of the crazy, I kept a small written list of medical happenings so that I could report them to my doctor if I had to. I realized after I wrote the list that if I hadn't kept it, there was no way I'd ever be able to remember what happened.  If there weren't records of doctor visits, ambulance rides, plane tickets from visitors and seizures on calendars, I'm not sure I would remember much at all.

There are plenty of reasons I could explain that away.  And definitely medical ones for sure. But I started thinking, I spend a lot of time focused on what's coming next. Like my life is one exciting mystery novel and I'm hung on the next word, the next page.  I have another confession, I always cheat at books - flawed again.  I always read the last page before I get to the end.  I know, I know, it's a waste of a book then.  That's just how I feel if I'm being honest.  I would skip to the last page of my life if I could. Would you? But there's a bigger question, and I've thought about it a lot in the last week, and I think about it when people post  #tbt pictures - which for anyone who isn't Facebook or Twitter literate (Mom), it means "throw-back-thursday." Don't ask me about the # sign, I think it has something to do with a rotary phone - kidding.

But how much do I look back?  I think about what my book would look like. The book of my life, my story. Would I be able to complete an 8th grade level comprehension quiz on my own life? I don't even think I would know which chapter basic events happened...that is...

Unless I wrote it down.

Writing isn't just cathartic for me anymore. It's become a record of my soul and life. I'm not sure how I'll ever go on without it anymore, it sort of feels like breathing.

And the connection I feel with the events I've written down and the learning that's come from those events, I'm starting to feel that if I'd only learned sooner...

I definitely think once you've written things down, it's almost like a lesson you can cross off your list, like something you've picked up at the grocery store, or an item you've found on a scavenger hunt.

Side note: Scavenger Hunt: (Generation Z and the end of Generation Y's): this is not a computer game or played on a phone. And it's not just something you do for Bachelorette parties. A scavenger hunt was/is a game, played usually during sleepovers, where we collected random things, we were allowed to play this game OUTSIDE in the DARK and we rang the doorbell of our NEIGHBORS, well...because we actually knew them, weird, I know.)

When I think about some of the lessons of the past, I think if I had taken the time to write them down, to think about them, to really understand what happened, maybe I wouldn't have had to repeat them. I'm not really making a new observation, I guess I'm just getting there in my own way, It's the classic tale that you live the same lessons over and over again until you "get" them.

But it's not just the things your forget is it? It's really odd the things you remember when you begin to reflect on how much your life has changed in one year. As I've started this writing assignment, one particular moment jumped out at me. It seemed a fleeting conversation, definitely a question I would have missed on an 8th grade comprehension question of my life. And it happened less than a year ago.

But here it is..

I remember crying to Randy one night, I was completely exhausted, I was in my work clothes and it was after 7 PM at night. It had been a particularly bad day at work, (the details of that day, I couldn't tell you, funny how that works.)  What I do remember is crying, not able to eat dinner, beyond exhausted, sitting in my work clothes, slumped over the couch with my feet up, sad that he had to put the baby to bed before I could snuggle with him.  I was unable to eat or move.  Randy came back downstairs to comfort me, and we talked.

I remember the words so clearly now it almost takes my breath away, In a completely ugly cry I said, "I'm so tired Randy, I just need time, I just need a break.  I just want to know what it feels like to be bored again. I want time, it's the only thing I can't get more of right now. I just want to be with the baby."

Now my stomach just drops every time I think back to it.

I keep thinking that I should be careful what I wish for...

I'm not in anyway saying that I caused my dilemma, or that God, in all his glory, decided to teach me a lesson and struck me down for being so ungrateful. No, not really.  But what I am saying, is that maybe I wasn't really in the right life.  Maybe I wasn't happy. Maybe it wasn't authentic and I was working for the wrong things. Maybe there needed to be a shift to make things right.


I don't know the answer to that. I don't really think I'm there yet. I have many more questions to answer before I can begin to understand why this happened and where I'm at and where I'll go and all of that.  (See my previous post.)  I'd like to think I'm a changed person, I'm reformed - I'm trying not to skip pages. I'm trying not to skip paragraphs anymore.  No more sneaking peeks. If you haven't noticed, I've spent a lot of time reviewing and summarizing the last few chapters. Maybe not from the beginning, but I had to start somewhere. Somewhere is good. Right? I think I might be ready for my quiz - maybe we should make it an essay.