I gave in to the fear

I did.

I totally caved and cried uncle and let it win.

I've been too afraid to write about this stuff, too afraid of what it would make me feel, too afraid of what it would mean I would have to do.

That I would have to face it. Really face it. And deal with it. And accept it as my reality. It is SO much easier to hide and pull the covers over my head. Did you know that? Well, it is. But that is all bullshit. Because deep down I know it isn't right to do that. I know it. And that part of me that demands LIFE and JOY and BREATH whispers to me all the time that I can't hide anymore. Lately it's been yelling at me.

And I finally listened.

So anyone who is actually reading this needs to understand right now that a good lot of what I'm going to document in here isn't going to be pretty. Actually a good lot of it is going to be ugly and raw but absolutely true. At least it will be my truth.

I was afraid to write in here - afraid of the judgement my honesty might bring from others.
But you know what? So what. So what if I'm judged by other people reading this. This is MY blog; these are MY experiences; and these are MY feelings.

Judge if you want but you will not fully understand or stand as my judge until you have lived what I am living right now. I have one being who will judge me - just as you do - and I haven't stood in that Divine presence YET.

So here it is. There is going to be a lot of self loathing, self hatred, hatred of these bullshit diseases, hatred of my face, grief over the loss of my face, of a lot of my identity - of who I was and who I just don't get to be anymore. There is gonna be a lot of anger. If you don't like it - don't read it. These are my feelings right now and damnit they are VALID. They are a part of this experience and I can't keep covering them up. I will HAVE to let myself experience them all - fully - to ever hope to crawl out the other end of this thing. This is the place I'm going to attempt to do that.

Here's a story for you all.

2 days ago I had to take my oldest son to Dallas and put him on a plane to go see his dad for the summer. We went down the night before b/c my asshat of an ex-husband booked Alec on a 7am flight. Ya - don't even get me started. So we went the night before and got a hotel room.

We went to dinner and stuffed ourselves silly - so to let things digest before we exploded - we walked around a little out door mall and went into the Old Navy store there. I bought Alec a couple of long sleeved shirts to take with him (his dad lives in Washington state and it is still in the 50's there - can you imagine? - sorry I tend to digress)

So we were standing there checking out and the girl checking us out was talking to Alec and me. Over to my right there were 2 young guys - probably around 15 - just sitting there waiting on their mom to get done shopping. Every single time I said something - they busted out laughing. LAUGHING. And then they'd make faces at each other. It was VERY.OBVIOUS. they were laughing at us - or me rather. It was like a hard slap in the face because it was so unexpected. To be laughed at - so obviously. In public. Right out in the open.

I tried to ignore them. We got outside and Alec said - "what were those 2 guys laughing at? Seriously - what was their deal? That was really annoying." He kept talking about it because it WAS really obvious.

Now you see - my angel of a son is 12. And just like these lovely people in my family - they are so used to looking at me now they don't even SEE the Bell's Palsy residuals anymore. They just.see.me. But when I'm out in public, around strangers, they don't see ME and the me I used to be. They see a woman whose face looks a bit off but looks REALLY weird when she speaks. My mouth doesn't act exactly like it should when I speak anymore, my smile is still wonky, I have that weird dimple that shows up and moves around off center, and the right side of my face and eye do odd things when I talk - and I can't control any of it. Most of the time people out and about just stare at that side of my face for a few seconds. This was the first time I have experienced someone actually laughing at me. In front of me. At my face. At what I look like now.

It was a deeply painful experience for me.

I am crying even as I type this right now.

Do you know that I don't feel any different on the inside? Do you know that? Do you know that I still forget sometimes that I look like this? Well, I do. But then I have to go out in public and I remember. Because I see how people see me now. And it hurts.

I know it could be worse. I do. I get that.

But this sucks too.

And it is OK for me to say it.

And to feel it.

Odd

We went to my husband's office party the other night and it was fun. It was the first time I've been out of the house without the kids in a long time. And it is still hard for me to go out in public because I am very aware of how I look now. I know I look a TON better but that I'm still a bit...off. And that is ok. I have to begin to LIVE my life again. Get busy living or get busy dying right? And I'm not ready to die. Not yet. Not for a long while.

But I noticed some things while I was there.

People look at me a bit different now. Rather than looking at me as I'm talking...they LOOK AT me and I can tell they aren't listening because they are staring at my face...probably trying to figure out why my mouth looks they way it does when I speak.

I hate that.

Here's the other thing. I don't even know how many people because I lost count - but the first thing they said to me was not, hello - or hi or haven't seen you in a while...but it was, "Oh my gosh, How are you feeling????"

*sigh*

I know they mean well. I do. I get that. And I appreciate it.

BUT

and it's a big damn BUT

I feel fine.

Truthfully I've never felt bad. Well, not physically at least. If I hadn't gotten the Bell's, then I never would have had the MRI and I would not know about the tumors. I don't have headaches. I feel normal.

Physically, I feel normal.

Mentally, emotionally, and psychologically I am a trainwreck a lot of the time. Actually I'm pretty much fucked.

BUT

and again, this is a big BUT

No one wants to hear that.

They don't actually want you to tell them the truth. They don't want to hear that there are days I can't get off the floor. They don't want to know about the days I cry all day long. They don't want to talk about how afraid I am that I might die from this thing behind my eye. It makes them nervous; uncomfortable. It tends to end conversations. And then those same people avoid you for the rest of the night. My bet would be that most people with cancer have this same experience.

And it sucks ass ya'll.

If you are reading this and you are lucky enough to not have cancer and you know someone who does...if you see them - either talk to them about other stuff - like regular LIFE stuff. OR, if you do ask about the cancer - then do them the courtesy of actually *listening* to what they have to say. Authentically. They might need to talk about it. And if you can't do that then don't ask. mmmmm K?

I hate this. But then who actually likes going through any of this - right?

It's Wordless Wednesday - some pics of me from Saturday. You can still see the Bell's residuals. And that creepy ass dimple thing in my chin. I DON'T HAVE A DIMPLE IN MY FN CHIN.

10 months into Bell's Palsy

fn dimple...

lips and mouth still crooked

And because I want to leave you with something happy

My little Diva girl...outside enjoying the weather - 10 months old

Hope everyone has a good day.

A Picture is Worth a Thousand Words

Or is it?

So I'm going to post pictures of me during this journey with Bell's Palsy. This is *not* a pleasant thing to do and I'm scared to death. It's akin to walking around completely naked and hoping no one laughs. I need to do this though. I feel like this is part of my emotional healing process; me facing my fears. And right now the mirror and how others see me are 2 big fears.

So first off a before picture of me....ready?

So then 1 week after my daughter was born I woke up with Bell's. All of a sudden half my face didn't work. At all. And after about a week it looked like the right side of my face was sliding off my skull. Seriously.

I didn't allow ANY photos of me during that time because it was so awful. I didn't get the nerve up to keep a photo I took of myself until 3 months into this experience. This photo is from September 2009. I can, at least, smile by this time. The right side of my face is still obviously affected but it was SO MUCH BETTER by this time. You can tell my right eye still doesn't want to work and my smile isn't totally correct yet - but we are getting there.

 This next one is from October 2009. I was 4 1/2 months in at this point. Excuse the makeup and such but this was taken on Halloween; I had a vampire costume on and full makeup (I was trying for normalcy here even though I still looked wonky.) So you can see that my right eye is getting better - it isn't totally perfect yet but it IS better just from September. However this is where we start to enter residualville. If you notice - the right side of my mouth is kinda pulling upwards and so is my right nostril. It isn't that bad here yet but this was just the beginning.

This next photo is from November 2009. Not a great picture, I had been crying right before this so my nose is all red. Again, my eye is better but still not normal. Also you can really see that the right side of my mouth is pulling upwards now, as well as the right nostril. I can't do anything about that - it is involuntary. The muscles have become hypertonic - after months of being lax now they are receiving nerve signals and pull constantly. It is way worse when I close that eye. I'll see if I can find a picture of that too. This was taken on Thanksgiving Day and at 5 1/2 months into Bell's Palsy.

This photo is from about the second week in December. Not so different from the last picture. I took it on my 6th month anniversary with Bell's. It seems I hit a sort of "plateau" with my recovery here. I am better here but still....off.






This photo is from the first week in January. I took this at 1 week shy of 7 months living with Bell's.

This is still January 2010 and is a photo (taken at the same time as the other one) of my residuals. This is what happens when I try to close my right eye. You will notice how much the right side of my mouth pulls. I have zero control over that. The nerve evidently re-connected wrong. It sucks out loud ya'll.

This photo I took last week - still a bit off but better. This was right before I left for my Acupuncture appointment. My eyes are almost the same size again. Although I think one of the damn residuals is that now instead of my right eye being too large it's actually becoming smaller than the left. *shaking head* This is the craziest condition ever I think.




And this is the same day/time but with my eyes closed to show the residuals. My mouth is still pulling upwards but not as bad and my eye is closed. Now I'm having to really try to hold my eye closed but it's so much better than it was.




This is me today. I just went and put my contacts in (I have not been able to wear my contacts in almost 8 months) and put makeup on. Still not normal yet but so much better. I see improvement just from last week. I am 4 days shy of having had this damn shit for 8 months. Here are the places I still need to heal: my mouth - I still can't pucker my lips or really control my top or bottom lip on the right side, and the top of my eye/forehead - I can't raise my right eyebrow or wrinkle the right side of my forehead.
I would like the residuals to go away. The one that causes my mouth to pull upwards and the newest one - the dimple on my chin. See it? I don't actually have a dimple but now the muscles that connect there have also become hypertonic and pull constantly in two different directions causing the weird dimple. *sigh*

BUT I'm hopeful. I'm working at accepting me the way I am. Some days I am considerably better at it than others. Today is a good day and I'm hopeful. There is improvement and I am holding on to that. Maybe. Maybe it will still come back. Baby steps. And courage in small doses.