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.