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.

What you do and Who you are

Imagine that someone walks up to me and says, "Hello, how are you, who are you really?"

That never happens. Weird right?  Who am I?

They would never say that, instead they say, "What do you do?"

It's so awkward for me now that I have lost my job. :(

It used to roll of the tongue.  Okay, I'll be real, sometimes I did, I kind of bragged, I mean, I was sort of proud to be an Executive Director of some really cool Y's.  I'm flawed, I'll admit it.

Now what? Now I say, "I used to be an Executive Director?"

Blegh! (my throw-up face here)

When I say it, I feel like I've plastered one of those old worn out bumper stickers on my car that says, "My child is on the school Honor Roll," but now that kid is 25.  It's just weird that I've let it hang around so long.



But it wasn't that long ago.  What's the limit here?  How long should I keep it hanging around? How long is that a part of who I am/was? Was it ever really part of my identity? I mean I spent almost 14 years of my life in service, and I mean IN SERVICE to the Y. I've managed to collect some really amazing friends, and left behind some not so amazing people - sorry but that's the truth. Don't we all feel that way?

So now what? I mean a lot of people lose a job, but I know right where I left mine. I didn't do anything to deserve losing mine. I just got sick. I feel the full range, I'm kind of angry that it happened, I kind of feel abandoned, I kind of feel like I need to find myself and all of that...

But now that second question is just hanging out there...

WHO AM I????

It's like after 14 years, I've been letting someone else define me:

I am a Membership Director (see attached job description)
I am a Senior Program Director (see attached job description)
I am an Executive Director (see attached job description)...

and some days I'm so hungry to get back to work and define my next step but shortly after I realize that I'm just trying to avoid answering that question.

I know, I know, as everyone keeps reminding me, and I know it's true...I can't go back...still not better. (Hanging head) Thanks for reminding me.

Now, I just drip my sad all over the place. And drag my big fat question around like security blanket.

I have no idea how to define myself.

The faith side in me wants to tell you I'm defined by my faith.  But, I don't really feel that way right now. I don't have a defined direction.  The mother in me wants to tell you that I'm defined enough as a parent right now and can let my child be enough, but it can't be everything, and it's not supposed to be. The wife in me wants to tell you that I can devote myself to my family, but again, there needs to be more...

And to be completely honest, at 35 years old, I will tell you that I have absolutely no idea how to make myself happy. 

I can't even tell you how hard it was to type that last sentence.  And not just to put it out there into the blogosphere, or into the world...but to admit it to myself. It's a realization that's been coming on since I lost my job in November. It's then that my world started to slow down when my hearing started to go and quiet started to settle in. You see it's when the quiet settles in that you really start to listen and you hear how dissatisfied you are with yourself.

When you're alone a lot, or even hanging out with a 1 year old and a dog keeping you busy, you do a lot of thinking, there's a lot of inner monologue.  Sometimes it can do a lot of good and sometimes it can do a lot of damage.  It really is a roller-coaster and the last 6 months have tested my ability to "go with the flow." Plus, grace - not my best trait, like I said earlier - flawed.  The one thing I know is that before I can even start to answer the question "Who am I?", I have several other questions I need to answer. I've realized that it's the only way to start, or just like in the game of Sorry, my little pawn is just going to get knocked back to home over and over again. It's definitely more complicated, but I've never been shy of hard work. See, there's a positive trait.  I'm working on it!

There's also something interesting about my current job. (actually I'll say that I have two full time jobs right now). The first job is getting healthy. And part of that is a lot of paperwork. Paperwork for a disability claim is a nightmare, if you've ever had to do it, let me be the first to say, I am so sorry.

The second job I have is the one I am really talking about, my job as a stay at home mom. I'm also going to admit something, (don't hate me), I'm one of those working moms who didn't understand what stay at home moms did all day.  Yeah...I suck. Sorry. But, I'm getting to the appreciation part, so hold on.  And being a parent is difficult as it is but this is stretched across the entire day and then work week.  It's just more exhausting. But it's not only a job, it's a daily love letter to your kid. Each and every day, no matter how tired, not matter how sick, you get up, you smile, you give 100%. There are ways to sneak by in other jobs and give a little less, walk around a little more, extra conversations with coworkers, extra long lunches. Nope, not with this job, and definitely not when you can't drive and build out a little variety to your day. I've never known the depth of my heart until I was given this job, and the job description is only one sentence long. Love your kid until you drop.

I was never really sure about staying home before, even though I always imagined what it would be like when I was a working mom.  In my mind, there were no achievements, no awards. In my work life, I often liked the moments of beating my budgets or program innovation. I liked adding accomplishments to my resume and sometimes getting my picture in the paper.  In my stay at home mom job, there are now flashes of virtual photographs that get stored in my memory. I'm not talking about real photographs, although you do get more of those, but you can't have your phone on you all of the time, and plus, these virtual photographs are better. They hold more than an image, they hold emotion too. There are flashes of smiles and tears and holding a fork for the first time. There are flashes of hugs and random moments of putting on shirts and tickling feet and sweet deep breaths from naps.  There are firsts of amazing weeks where book pages were turned for the first time and sippy cups were mastered. I was there for these moments and can tuck those feelings away for a future time and find them whenever I need my son close to me.  And all of his achievements are way more important than anything I could ever put on a resume or see in the paper.  I didn't ever see this coming, I never expected to get this job, I didn't put a suit on or interview, I definitely didn't expect to have it thrust upon me, but it's pretty amazing that in this process where I've lost so much my son was able to gain the most amazing thing, me.

Recently, someone asked me what I wanted most for my son, what aspirations I had for him.  If I had one wish for him, what would I want him to be? Would I want him to be a musician?  A famous writer?  Go to Harvard? An actor? Be an athlete like LeBron James?  My answer is simple, and it's true.  I want only one thing for my son and I'll do whatever I can to help him figure it out. I want my son to be able to do the one thing I could not figure out by the age of 35, I want him to figure out how to be happy and I want him to do that for as long as he can. I know everything else will fall into place and it's the only thing worth having. How quickly he reads, test scores, whether or not he goes to Harvard and all the rest of it, well, there are enough parents worried about all that.  The world definitely doesn't need one more.

Expectations lead to disappointments-well something like that anyway

I keep hearing encouraging words. Something has to end for something new to begin. You'll be better for it.  Grace under pressure. And everything you can imagine that you say to someone who isn't really "sick" but has an inconvenient disorder-that has changed their life and has taken some pretty significant "things" from them - their job, some of their hearing, some friendships, their ability to be a regular part of the world (normal) yada yada yada etc. etc. etc.

Now that I've started to feel just a little bit better and almost 6 months have gone by I expected to be a lot better by now. I hoped that I'd be back to work, or on a new path. I love my son and I appreciate this time, but I definitely didn't expect to be recovering at this point in my life.  And now that things are starting to be a little more clear I'm trying to remember not to only think about all of the things that went wrong, I am trying to think about some of the wins.

So, I'll go back a little bit more. Let's see, tremors, ambulances, MRI, seizures, brother visits, bad doctor...oh wait. Bad doctor, let's go back to that.  You see, it turns out that doctor I had at the very beginning wasn't so great. I had sought out other opinions, but I stuck it out with that very first doctor because I had hope in the system that he knew what to do.  He was the one that put me on that zombie medicine. Well, it didn't work. It didn't work and caused some really strange side effects, like hammering nails (I'm actually pretty handy, I braced a shelf to the wall) at 3AM walking around yelling, deciding to burn papers in the fireplace.

The thing here, that I only realize now, is that if you don't have someone to walk into these appointments with you - you miss a lot. I had to have someone sit in the car with my baby or sit in the waiting room with the baby, so I was often in the exam room alone.  I kept telling the doctor about all of the terrible side effects, but he just kept telling me that I was getting so much better.  He was SO convincing. I never realized he never asked me how many seizures I was having, or what my quality of life was like, he just kept saying, it's getting better.  But...he didn't have any proof.

But then he did have some...or so he said.  We repeated an EEG and he was excited. Actually, I think he would have jumped up and down if it were appropriate. And he said there was some improvement from my test.  (Quick disclaimer here - if you were in my life at all during this time you knew that everything I did was in sssllloooww motion. I walked slowly, I talked slowly, I was in jello. There was nothing normal about me at all. Even my eye movement was slow. AND I was still having multiple seizures daily, no matter what the EEG said.)

But, I was happy. Improvement was good!  But the medicine was so bad. So I pleaded with the doctor once again to listen. Could you please change the medicine, there has to be something to add or change.  He said he would add something to help.  OK, great.  Help is good. I wanted to change, but help is good.  I'll try that.

It was about this time, that I started to realize I was being handed a piece of paper each time I left the doctor's office. It was something called "my chart" I kept throwing it away because I didn't really care. I trusted the doctor and was receiving care.

Flash forward. Nothing was getting any better. Seizures continued and now I knew I was not going to be able to return to work, I was going to lose my job and had to apply for disability.  I needed to get off this medication.  I finally signed up for the my chart because I knew the Neurologist wanted me to stay on the medication so badly that he was likely to tell me to switch to a new doctor.

When I signed up for my chart, I was SHOCKED to see that his notes reflected my complaints as "mild irritations" and that my seizures were subsiding. WHAT???  He never even asked me? How can a doctor put something in your record that is - flat out- just his opinion!  I felt lied to and betrayed! I was so angry.

I immediately sought help from my Psychiatrist to continue medication and then found a new Neurologist and made an appointment.  It took days to match up a Neurologist with my insurance provider, to make an appointment, to make sure I had someone who could watch the baby and drive me - it was so stressful it was enough to cause a seizure.  What insurance companies don't tell you is that they don't update their systems very often, so you have to call the doctor's offices right after you call them to make sure that they are in network, because if you don't, you'll make and appointment only to find out that they don't really carry your insurance!

So an appointment was made after 2 days of searching and calling within a certain distance of my house so that I could make this work - God help me!  I go to the Psychiatrist and update her, she is pleased I have an appointment, she will keep helping with the meds and with the disability form.

1 week later I get a call from the new Neurologist that they have quit their practice. My perfect house of cards had come tumbling down. I curled up into a ball and cried my eyes out.  It was the only doctor on the list from my insurance left that would work for our family.  We knew that the following year we would be on Randy's insurance but that meant that any new doctor would charge us the full rate for any visit in 2014. ($300-$500)  and that did not include tests.  Most likely any new Neurologist would want to complete his/her own EEG.

What were we going to do????

We talked it over.  Full price was the only way to go.  Then my dad called. His friend had epilepsy years ago, she and my dad had talked recently. She gave him the name of her doctor because she had a lot of success.  It just so happened that we thought that was the name of our next door neighbor's doctor.  (She also turns out to be the doctor of a very good friend who sees her for migraines). So, we decide to go with her.  We are told she's the best!!  Let's roll with it. You can't put a price on health and if she's that good, let's get her.

So, I call and make an appointment knowing full well that without my job and knowing that Randy started a new job, financially, we were going to be in a bind until we figured something out. My first question was, "Is she taking new patients?"  The answer was yes!  Nice.  My next question was, "Does she take Randy's insurance for 2015?" The answer was yes! Awesome, we are on a roll.  My next question was, "what is her full time rate?" Ugh...you don't even want to know...but then the receptionist asked me what my current insurance was and I told her and she said that they took it and that my insurance company must not have updated their system!!!!!!!!!  That had never happened the other way around before!!!!

I couldn't believe it!  Amazing, so it was going to be a copay of $35. Nice.

And this doctor is on her game.

And I'm starting to feel a little bit better.

And I don't want to end on a sour note...but well, yeah I guess I am.

You see, it's been almost 6 months of this journey. And I remember when all of this first went down.

I thought that in 6 months I'd be free.

 I'd have this figured out. I expected this to be resolved and over.

And I'm still at home with Chance laying next to me while I type.

I'm still in my stay at home mom uniform with a knotty bun tied up and haven't showered yet today. The slow-zombie-ness is gone and the seizures are getting better but the sadness and loneliness is kicking in high gear.

That's the thing about feeling a little better and being stuck. You're still stuck. Only you're stuck and feeling a little better saddled with all the emotions you were too busy to deal with while you were in crisis mode for the past 6 months. And you don't feel good enough to do much more, only good enough to climb the stairs without breathing heavy.

I try to look beyond, like what are my next steps if I get better, what kind of work could I do? What will my future look like? Could I consult? Could I start a new career? Who am I? Who do I want to be? You know simple questions like that in-between naps and posts to Spencer's Newsgroup.

I guess I'm just putting it out there...

I've had a great time over the past couple of weeks being surrounded by friends and my mom and now I feel alone again.  I'm just tired of the waiting game. I expected this to be over by now, and that was a big mistake.

I don't want sympathy, quite the opposite, actually  There are people with much larger issues.

It's just honesty, plain and simple.

Riding the wave, and my sick love for analogies

Some days waking up and getting up is really difficult right now. Moving around with the anxiety that my body could betray me.  But hearing "Ma! Ma! Ma! Ma!" yelled sweetly from the crib next door just melts it all away and my feet get moving and my attitude improves and my spirit is lifted. There is no medicine better than the love of a child.

Second to that right now is the ability to sit down and type. Knowing that there is this empty box to type in and that I can fill it with my words and ideas, no matter what anyone else thinks or feels about it. It reflects part of my aching soul and seeing it somehow looking back at me helps me to heal a little more each time.


Recently, I was at a friend's house having yet another moment of word vomit. I call it word vomit because it's so rare that I am around adults to talk to that I feel like I get started talking and I literally cannot stop. It's like word vomit that flows.  Ok gross.  I guess scratch that...here's a better analogy because now I feel like Chunk from Goonies and I'm gonna be sick.

 (Once again, for those who don't know this reference Kelly Lawler, go watch it.) So, here's the better analogy, I'm like a wind up doll.  I sit at home and think a bunch of things, if I don't go anywhere or have anyone to talk to or go to therapy - yes therapy, I actually have two therapists (I need A LOT of help!) then I end of talking people's faces off when I actually get a chance to talk to REAL LIVE PEOPLE.  It's even worse if they don't know what's going on with me, I turn into a classic older sick person (no offense please) complaining about goiters and kidney stones--both of which I hear are painful.  But, I take every opportunity to melt people's faces off with my health issues or discussions on growth or accepting change.

I always feel so dirty afterwards.

Ha.

Like I've stolen something from them.  Like I've taken time from them that they will never get back and they are covered, just covered in my word vomit and their faces are laying there melted on the floor.  And once I've left the party early, they have to wipe it all off, pick up their faces and take a deep breath and wonder, "What was that tornado of crazy spouting all sorts of insanity?"

But I will qualify that with a few nuggets of hopeful realizations.  Not for them. I cannot speak for them. Ha! I don't think I am doing anyone else any good at all. And if by and stroke of crazy luck I am - great. But I feel dirty because because I need them so badly for my word vomit, they help me get  it out SO much.

But a an absolutely MAGICAL thing happened (for me) the other night when I was describing my faith.  I've had a really difficult time thinking of how to describe it through this ordeal.  I really like analogies, if you've been reading my blog at all or even this entry you've probably figured that out by now.  And if you've been my staff at any point in time, then you absolutely know my love of analogies to be true.

Let me start by saying that it takes me an incredible amount of time to write these blogs. I'm literally on brain-numbing medication.  Sometimes I write parts of these blogs over the course of several days pieces at a time.  I cannot focus for very long and I have to re-read them several times looking for spelling mistakes and grammar errors and I know I still miss a  ton of them-so sorry for any grammar loving fiends. I'm okay with it, well because it's a blog and it's mine.  But, I'm seeing things a bit more clearly now because I'm on a new medication that makes me a bit less like a zombie and instead just more ADD. I'm explaining this only to let you know that there really isn't any way I would have been able to describe my struggle with faith in the past.

I don't know how or why but the word vomit - er the wind up started up the other night and I started explaining about how much control I felt I had in my life. I tried to control a lot of situations. Ok, I'll be come clean, I tried to control MOST situations.  I've flashed back to a conversation I had  with a friend during a tough time during my past over and over throughout my life and in my mind's eye-I could still see him standing there saying the same thing to me "just be." It's a lesson I have struggled with understanding ever since he made the statement. Each time I went to hot yoga and they do the runner's pose and they mention that you have to be uncomfortable in the stretch to grow, I would always think of his statement, because it made me so uncomfortable just like the runners pose. I could never really figure out why.  And I always fought the stretch.

Flash forward to the word vomit and the "get together" and my conversation about faith. During the course of the past several months that I've been struggling with poor health,  I've been angry.  I've been really angry. I've been hurt. I've felt abandoned. At times, by family, friends, by coworkers, by God, by doctors and even by myself. And by God's grace something just fell out of my mouth and in conversation it poured out of me, and it helped me.  And, if you don't believe in what I believe, that's fine, I'm not trying to convert you but maybe you can relate to the control part.

I told the women sitting next to me that I've let go of the anger and the feeling of abandonment.  I'm not angry and I don't really feel the need to forgive anyone because I don't have any control.  And that I'm not really angry at God anymore because I am trying to ride the wave. And I saw the look of confusion and wrinkled brow. I explained. I said I've spent so much time trying to control everything, I felt so much like I was on a surfboard trying to control everything, the wind and the wave and my balance, that once I let go and just rode the wave, everything fell into place, I let God be in control and just stopped trying to manage everything. I finally understood what my friend had said years ago. "Just be."  And I explained and sort of admitted maybe even confessed that there were days I still tried to control, well everything, or got angry, those were the bad days, the days I fell off. But there were still the good days, the days I'd get back on the board and let Him be in control, the days He would provide the perfect wave to ride and I could let go, feel the sun on my face and hold my arms out to the side. Que the music from Titanic - Kidding.

 I'm thankful for the lesson.  It's not easy to have faith. I'm not going to sugar coat it. I don't have an easy time with this. And I have struggled for a very long time, years and years.  But, like I said, I'm looking for teaching through this because I think there are lessons through pain, just like there is growth from that runner's pose no matter how hard I fight it and I'm still hoping to get there or somewhere, maybe where ever the wave takes me.

Two words: Bad at math (Hearing loss and what they have in common)

More of the story unfolds.

Sorry, no goofy pictures of Prince or other 80's or 90's references in this one. Just good old fashioned story here.

I mentioned church in my last blog. And it's something I struggled with in the past.  But last Easter I was optimistic because Randy and I picked a church and took our little guy to his first church service.  He was decked out in a cute Easter outfit (Brock - not Randy) and joined us for a contemporary service.

I was a little emotional to be back, but happy to have tried.  It just didn't feel right.  Maybe it wasn't the right fit.  I wasn't sure.  But I thought there might be another church to try again in the future.

Another flash forward.

Around the first or second Sunday in September 2014, right after I had to stop working because my seizures had gotten crazy and my life impossible, I decided it was time to ask for divine help.  Plus, my mom was a church goer, she was staying with us and she really wanted to go.  The year before we went to a craft fair at this beautiful church around the corner right before Brock was born where we visited a friend from an old Y I worked at.  We thought it was a good place to start.

We walked in and we were greeted very kindly.  A woman met us at the door. I was looking very weak and very pale at this point. She took very good care of me and asked if there was anything we needed. I explained that I was extremely sensitive to sounds, and that unfortunately sounds triggered seizures. That I had just found out that I have epilepsy but we wanted to try church anyway.  Her face went blank.  "My husband has seizures.  He's the pastor here, she pointed up to the stage, she said she would do whatever it took to help me and my family stay and be comfortable.  She pointed towards a family room where we could sit and that she would monitor the volume.

I was very grateful and thought that it was a very odd coincidence. She explained more of her husband's story and the surgery that had resolved his problem.  I noticed the scar he had on his head and later researched it to see if it was my problem too - (thanks Web MD!) but it was not. And we were grateful and sat quietly and hoped a seizure was not going to be triggered by the loud music.

So...

We got through the first song.  And part of the second...and then I started to feel a tingle in my legs.  But at this point I had been carrying around ear plugs with me.  I noticed that this helped in the past when I was at the movie theater, even though it didn't stop the seizure there, it delayed it.  So, I always carried a pair with me.  I grabbed the ear plugs and put them in, even I was getting annoyed with myself - having to leave places because I wasn't feeling right or feeling my" seizure spidey senses tingling." Like a backwards superhero.

So I didn't want to force everyone to leave.  And then I was sure. Very sure it was going to happen.  And what does everyone do when they see a seizure - ugh! They call an ambulance...and I had been through this over and over and over. Blah.  So I usually I hide when I know it's going to happen and I really prefer to be in the comfort of my own home, whether that meant my bed or my couch or my floor.

I pulled the ear plugs out and then told my mom and husband we had to go, they knew by the look on my face that we had to move. So we booked it to the car.  The woman came after us hoping that she could still help, but it was way too late.  I got into the car and that's when I noticed, I must have pushed wax up into my left ear because I couldn't hear. Or I must have damaged my ear drum.

I had a seizure.

I don't remember where, I don't remember how bad it was. I don't remember anything else about it. There were so many at the time, it doesn't really matter.  But the next day my ear was still bothering me. I felt like I had an infection or something but it didn't hurt.  I had an appointment scheduled for my primary doctor that Friday to help piece some of this crazy together anyway, so I figured I would just talk to her about it then.

Friday came. I spoke to the doctor about everything, the tremors, the seizures, everything that had been going on, I didn't want my life in shambles! I thought she might help me put this whole puzzle together and have some ideas as to how to stop all of this craziness from happening.  She was sympathetic, but no ideas.  And the last bomb I dropped on her, was the ear.  I thought it was an after thought...like a little cherry on top of a mound of a pile a trash.  She took a look.  She said it looked pretty normal.  There was a little bit of cloudiness so she said to wait it out because whatever was going on was healing itself.

Phew!

Ok, worrying over. Doc said it was okay.  Hearing will come back. A little inflammation, a little cloudy.  Just wait.  But another week went by, and nothing happened.  No hearing returned. I called my primary care doctor again but she was on vacation so I thought, I don't want to wait if it's an infection, I need to get it under control.  So I went to the Walgreen's immediate care.

The doctor there was very nice and listened to my entire long long story (as you are beginning to uncover).  She said that my ear looked perfect. She looked like she wanted to cry.  She said, I'll write you two prescriptions, one is drops, the other are steroids, but if they do not work in 5 days you should call an ENT right away. She placed her hand on my knee and said in a very kind voice, "I don't want to scare you, but you've had a lot of neurological things going on, you may need to prepare yourself that something has happened to your ear."

Crap, What does that mean? Ok, well, I have meds, so surely that will do the trick, finally someone gave me something to clear up this infection.  The last time I had swimmer's ear with an ear I got some drops and it cleared up an infection in 2 days!  Things were looking up and I was going to rest easy.

Day 1 - no change.  Day 2 - no change. Day 3 - no change.

Ok, I wasn't patient enough to wait the full 5 days. I called the ENT and made an appointment right away.  I explained my situation over the phone and they got me in the next day.  I was on some terrible medication at the time. And I had to go to all of these appointments alone because whoever drove me had to wait in the car with the baby.  So I was facing all of these potentially devastating conversations alone.

First step, check ear drums.  I was sure it was ruptured.  Nope.  Both were functioning perfect. Ok.

Next step, hearing test.  Listen for beeps.  Raise hand. Felt pretty good about that too, thought I could hear some beeps in both ears.  Not too worried, maybe this was something that could be fixed pretty easily.

Next step, recognize some words without reading lips.  Right ear first.  Balloon, Hotdog, Birthday.  Easy enough.

Left ear.  Shhhhhhhhhhhhhhhhh

I looked at the Audiologist with a blank stare. I shook my head.  She tried one more time.  I shook my head again and I started to cry.  She looked like she was going to cry too.

She walked me into the doctor's room.  He cleaned out my right ear in hopes to help me hear better out of my that ear and explained that I had no usable hearing in my left ear.  He said there were a couple of possibilities.  He said the one he hoped it was is something called an Acoustic Neuroma.  It could also be causing my seizures.  It's a series of tumors in your ear canal.

SWEET!!!  Blast those tumors!!!!  That's got to be it!!!!!  Nice!!!!!

What's the treatment Doc?

Well first we need to do an MRI.

Oh crap.

But we can put you under.

Cool, I'm excited again.

But before we could get started 4 days later I woke up with a dampening in my right ear. I made another appointment at the doctor and lost 20% of the hearing in my right ear.  Something was happening and I was hoping the doctor could diagnose me quickly.

I won't bore you with the details of the test because you already know that it wasn't the answer. I didn't have it, and to quote Arnold, "It's not a tumor." and we moved on.

I was moved right on to someone called an Inner Ear Specialist.  I didn't even know they existed. At this point I was drugged up on that pretty terrible medication. And I was still looking for answers.  Now I was hoping this new doctor would at least help me to understand why I've lost most of the hearing in my left ear and why my right ear was getting funky.

The appointment was odd. I was in a sea of people in white coats moving about and everyone there acted as though I should know what was going on.  Maybe I should have done the research, maybe I was over medicated...don't know.

It was my turn to see a nurse.  Blah blah blah blah, stick something in my ear and sit and wait.  Then after a while, they took me into a room and this is how the conversation went...

"We've reviewed your medical record and we know you are on a lot of medication for your seizures but frankly you look like a drug addict.  Is there someone here with you?  Are you okay to move forward?"

"Move forward with what?  My mom is outside with my baby, that is why she cannot come in, I have a ride, I just have epilepsy so I cannot drive. I'm okay, just on meds, I'm tired."

The nurse went through some kind of procedure, blah blah, numbing, blah blah 4 weeks, blah blah hearing restored.

Ok sign here.

OK, I signed.

I was instructed to wait in the chair for my name to be called and then make 3 more appointments for on the same day for 3 consecutive weeks.

"Barbara."

I got up, went into the room, sat down and then I understood. I saw the needle.  They explained that I was going to get steroid injections in my ear, through my ear drums 4 times.  They hoped this would restore my hearing.  They said it wouldn't hurt, that they put lidocaine on the outside of my ear.  They also said I wouldn't experience any results for 8 weeks.

Ok.  Well, if you say it doesn't hurt.

Lie.  Terrible, Horrible. Dirty. Awful. Disgusting. Lie.

Plus, I was so drugged up, I didn't read the fine print.  The statistics on getting my hearing back weren't very good, and I was still going to get 3 more shots.  How was I going to get through this?  The pain lasted for hours.  I wish in my state, I had been better at math because I never would have agreed if I realized that 50% of people saw an increase of hearing of about 20-55%.  Those are not very good odds for the pain I was going through considering the rest of the pain I was already going through!!

So, did it work? I don't know.  I haven't had a hearing test.  But they are subjective right, so I should probably be able to tell you.  No.  It didn't work.  I have no hearing in my left ear. But I don't think I've lost anymore in my right ear.  And that is some really good news. Because I've really got to hand it to my right ear, it's working overtime and doing a really good job.

So what happened?  It's kind of like the podcast Serial...we've got all the clues and all of these facts and images and everyone has their story but we won't every really know.

There are three theories about what happened.

1. The hearing loss is completely unrelated to any of the other factors that happened during the time I got sick. - SURE.

2. I had some kind of nerve damage - again unrelated to the epilepsy or seizures I was experiencing.

3. I could have torn a membrane in my ear or ears which allowed some of the fluid in my inner ear to drain causing a great deal of hearing loss in my left ear and some in my right.  (this theory is not able to be proven, I've already asked)


So where does that leave me?  I keep hoping that some of the hearing comes back...I'll test with my ipod on a given day and pull out my right ear bud when a song comes on that I don't know the words to just to see if I can make out the words. I can still hear some things out of that ear. Doctors just refer to it as "no usable" hearing because it's not helpful in anyway.

I'll still go for the test to see what they say, maybe there's some that's returned.  That would be great.  But I can't hear the tv very well and people have to stand on my right side to talk to me and it scared me for sure.  But I'm okay. I added it to the checklist of things I've lost because of getting sick, but as I've been writing and discovering, the things I've been gaining has been growing too.

Plus, I hear that when a superhero loses one of his/her senses one of the other senses become much stronger!

Generosity may come easy but feeling worthy of love can be difficult

With friends and loved ones, I've usually been generous with my effort, resources, skills and money.  Not usually my time, especially as I was working my way up the ladder.

Many times I've said to friends who were struggling with issues (especially poor retail service), "Here, hand me the phone, I'll take care of this for you." But when it came time to speak up for myself, I fell short.  I would back down. (I realize this is a pretty weak example but I think you're following me.) I'll easily stick up for others, but not myself.

In my adult years, coming into my own, I've been comfortable with picking up the check at the end of a meal with friends, but always felt awkward if they offered.  I'd at least try to make them split it.  I'd argue with them, do the "check dance," probably longer than I should, and have difficulty accepting their generosity.

I've been like this in other relationships too. I've felt unworthy of friendships.  I've even said this aloud to a couple of them.  I've judged myself because I've put them on pedestals so far above me that made it impossible for me to feel as though I deserved their friendship or their love.

This issue has even complicated my relationship with God. I have never really felt worthy of God's love. I've never really felt as though I was good enough or deserving enough to go to church. 

And I was always amazed by everything I had and felt it must be due to be luck. I was certain it wasn't based on any of my hard work and that I should count my blessings because it could be gone in an instant. There's no way I could attribute these things to myself...

I have often felt unworthy.

This has been made life difficult in many ways.  

It took terrible seizures and really bad side effects from medication in order for me to change my unhealthy diet and invest in eating in a healthier way.  It took terrible illness in order for me to get decent sleep each night and rest my body.  I don't know why it took epilepsy to make me take a look at the stress, and the whole picture of even just the basics of the way I was living. It took losing control in order to gain some healthy habits. 

Was I living in a way that was good for me?  Or was I just living in auto-pilot? (Sounds like I'm a wannabe Carrie from Sex and the City, but I really don't know. I honestly don't know the answer to those questions, lol.)

I loved my job. I love my family. I love all of the things I worked for.  And I am owning my journey here. So, I hope I don't sound ungrateful at all!  But once I was forced to stop and take care of me, I realized I had never done that before!  And having a baby had only made that worse because that's someone else to take care of, it's a distraction from investing in yourself when you didn't know how to  do it in the first place.

Christmas is passed and it's almost a new year, and I'm going to turn this whole thing around, because that's just the kind of girl that I am :)

I've been struggling with feeling worthy through life, through being sick, through everything. And I won't say I'm done with it.  But a few things have happened recently that have recently made me stop and consider whether or not I am worthy.

Here's the first reason:

Friends

They seem to be coming out of the woodwork.  With messages and kindness and visits and cards. There's too many to thank - or I'd list you all here.


I feel rich and warm and cared for and lucky.  And I didn't ask for any of it and I didn't do anything to deserve it, they have just offered it.  And that's the other thing, the offers-for help, for rides, for conversations, for parties. There aren't any expectations for returns, no questions about money for gas, no favors asked for in return, no hope for anything in exchange.  Just kindness headed in my direction, for my family, gifts for Brock.  It's a wonderful life and it's mine.

Here's the second reason:

A Random Act of Kindness

Someone dropped a gift off for my family on Christmas Eve.  I don't want to go into too much detail because I don't want to distract from the meaning of the gift. What I will tell you is to read a book, it's a New York Times Best Seller, it's called The Christmas Jar.  The book will give you the explanation if you are really interested. Our family plans to pay the gift forward to another family in the future.

What's important about the gift isn't what's tangible, it's that it was given. To us, for someone to make us feel worthy, cared for and loved.  I ran outside once I saw the gift to instantly return it to the gift giver.  I felt like there had to be someone else more deserving, maybe someone who needed it more, wanted it more, had a situation more serious than mine. And I realized that it would have been a mistake to do that. I think I understand better how important it is to be able to receive love as much as it is to be able to be generous.

I'm so extremely grateful for this lesson. I wish it hadn't taken me this long to understand, (but it could have taken a lot longer.)  I hope I don't forget. I guess I'll have this documented as a reminder of life lessons to turn to when I return back to an ordinarily healthy life so that I can remind myself what life is like when you have so much time to think and sort out so many thoughts and find lessons in the midst of a house in the suburbs with no place to go, a 1 year old, at&t cable, hulu, amazon prime, and some books to read. Until then, I'll keep searching for meaning...