The Road to acceptance

is a long one. It is. Not going to lie to anyone or paint a nice, glossy, rosy ass picture and act like you just wake up one day, open a window, feel a breeze on your face, hear birds singing outside and suddenly, it's all better. It isn't. Same shit is still on the inside of the window and on the inside of the person.

YOU HAVE TO DEAL WITH IT in order to get THROUGH IT.

I'm going to preach about this a bit today because I need too.
And this is my blog so I get too.

I am finding that many people in my life do not want me to go through the process that I need to go through to deal with all this crap - the palsy, the odd looking face, the 2 brain tumors, and the tumor on my eye, and my slowly losing my vision in that eye. I gotta tell you - that all this wonderful bullshit has left me a bit, raw, this past year. Any given day I have a myriad feelings going on; some of them good, some of them very dark.

And here's what I think. That those feelings - even the bad ones - are OKAY. And reasonable. And right. And THAT makes a whole lotta people a whole lotta uncomfortable.

I'm not sure if it's because they don't want me to have to hurt and feel pain and be sad. Or, if it's because my feeling those things and, *gasp*, actually talking about it, makes THEM feel things or remember things or relive things and THAT makes them uncomfortable. So they want me to be quiet. To just "move on already".

Well, I'm trying. I really am. But I gotta tell you - it's hard and I am struggling. Some days a lot more than others admittedly, but the struggle is there almost daily - to some degree. And again, I say I think that is ok.

To live is to suffer, to survive is to find some meaning in the suffering.
Friedrich Nietzsche

 I love me some Nietzsche - I do. He gets it right a lot of the time. If you aren't familiar with him - go get one of his books - read it now. Your brain and your soul will thank you for it. But I digress.

So yes, to live is to suffer. But the trick is surviving it and I absolutely believe that to survive it, at least for me, I have to find some meaning in all of it.

That is what I'm trying to do. Find some meaning in all of this.

For me, this process resembles a long tunnel. Once I get out the other end of it - into the light again - then I'll have made it through. But the tunnel part or the darkness, that is the grief, the sadness, the FEAR, the pain, the anger, and the absolute Rage I feel at times. But I have to go through it before I can make it out the other side. I think everyone has their "tunnel". For me it has to do with my tumors and the palsy, for others it is maybe the loss of someone, infertility, or addiction. And here is something else. Everyone has to walk through their tunnel ALONE. No one can do it with you. And no one can do it for you. You have to face it down on your own. Scary as hell - right? You bet. But, BUT it is what you must do. It is what I have to do. And I'm trying.

There are days I'm on the other side. And it feels great. And it is a step toward acceptance. But then there are days that I get pulled back IN to the tunnel. Thats ok too. I believe it is a natural part of the healing/acceptance process; two steps forward, one step back. This really seems to upset people - the people around me. It's like others think that once you've gone through the tunnel and emerged on the other side - you stay there. And maybe some lucky ones do. But I think it is more natural and real and logical that you get pulled back in or under sometimes.

Here's the trick. Recognize it when it happens. Embrace it for what it is. Feel what you must feel. All of it - especially the ugly parts. And remember that you WILL emerge from the tunnel again and into the light. Eventually you will be spending more time on the other side - in the light - than you do IN the tunnel in the dark. Maybe one day you won't ever be pulled back under again. Or maybe you will. And that is okay too. It is a process. A painful process; a struggle. And for me at least - this is how I approach it.

This brings me to the Pleasure Principle and Mr. Siggy Freud. I like Freud - I think he got a lot of things right too - especially this one. He says that the pleasure principal is universal and that it guides us in virtually everything we do, whether we are aware of it or not. The pleasure principle, in simplest terms, states that people are driven to seek pleasure and to avoid pain. In other words, we are willing to do things that will bring us pleasure and we are unwilling to do things that will cause us pain. Makes sense - right? The obvious thing here is physical pain but I submit that this also applies to emotional pain. And here's the rub. I also submit that humans will do MORE to avoid feeling emotional pain than they will to just feel physical pleasure. And this ties back to what I've been rambling on about - my attempting to go THROUGH all of this crap and how uncomfortable that seems to be making everyone around me. Well, truthfully it is making ME pretty damn uncomfortable a good lot of the time too.

So the going through it sucks. And I think it runs in the face of what, at least subconsciously, we are driven to do - to avoid pain at all costs.

But you still gotta do it - even if it hurts - to come out the other end and feel better for it. To find the meaning and the pleasure in life again, like it or not, you gotta wade through the pain. Sometimes the pain is only at your ankles, sometimes it's up to your eyeballs - but you gotta get through it anyway.

A good many people have told me that I just need to go see a doctor and "get on something to help me through it". Well, ok. Maybe. But I only agree with the pharmacology aspect of it insofar as I'm also doing the psychological work of feeling and dealing with it. Otherwise you just tossed a blanket over the pain. You did nothing to get to the core of it - the heart of the problem. If you don't get to what is actually CAUSING the pain - the pain will never go away. It just festers. Gets deeper. Harder. Colder.

And so do you.

So no, I'm not taking a pill to numb it away. Here is where, I think, most addictions come in to play - be it pills, alcohol, or some other drug. Because in drugs - whatever drug it is - you get the pleasure principle double whammy - avoidance of pain by numbing it AND pleasure from the high. You toss in a genetic pre-disposition to addiction or an addictive personality and there you go.

I don't want to go down that road.

I have to stay on the one I'm on - bumpy and rough and full of razor blades sometimes. But I have to walk it - through the tunnel and try to make it out the other side. With any luck I'll spend more and more time on the other side and less and less in the tunnel. But I have to feel this. And accept the pain for what it is if I ever hope to accept the reality of all of this.

It is what it is. I'm just trying to survive it.

Please don't anyone tell me it's time to "move on" anymore. That is just code for "aren't you over all this yet?" No, I'm not. I'm still dealing and struggling. I may off and on my whole life. Or maybe I'll be through with it next week. But whichever it is I'm trying to embrace that. And allow it to happen.

It is the only way I know how to heal.

We are never so defensless against suffering as when we love.
Sigmund Freud

Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.
Kahlil Gibran

We are healed from suffering only by experiencing it to the full.
Marcel Proust

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.

I'm still around

I haven't written in here much because I've discovered that the talking about all my stuff, the bells, the tumors, my eye, etc - tends to make me more depressed.

I have a hard enough time with all of it when I try NOT to think about it.

I have been keeping myself manically busy and documenting that on my other blog. It's all bullshit. And smoke and mirrors. Anything to keep me from thinking about this shitty ass reality.

But here's a dirty little secret. I still think about it. And I still have trouble sleeping. And I still cry. All the time.

Remember how I have talked about dreams I've had and how I look like my old self in my dreams? How I still look "normal" in my dreams? Well, this past week has seen that stop. Just like last night - when I dream now and see myself in my dreams - I look like I do now - I can see the bells or in my dream it's even worse. So maybe I'm beginning to accept it? I don't know.

I'm afraid my vision is actually getting worse. I've started researching glass eyes. I'm scared out of my fucking mind.

I will say this though. I'm still thankful this is happening to me. I'll take it and then some if it means my kids get to be fine and ok. I would rather it be me. So maybe it is ok. I know I have to learn to live with it and I'm trying...well, struggling is probably more accurate. But then - we all struggle with live don't we? Some of us just have MRI pictures of our demons is all.

Ya, so this is where I am. I know I'm depressed. I know I'm struggling with all of it. I refuse to give in to it. If that means I have to strip every piece of furniture in this house and repaint it so that I'm busy and I have a goal every day - then so be it. I have to have something to look forward too - something I can physically do and channel my energy into - right now it's things in my home since I can't do jack about the things in my head.

If anyone is actually reading this - take a minute and thank God or whoever you pray too - for all the things you DO have. I guarantee you - no matter what your situation - you still have MORE good than bad.

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.

you just never know

I was sitting in my stylists chair today and she was busy cutting my hair and we were talking. It was a nice day, I had some time away from the kids AND I was having my hair done - something that hasn't happened since last September. I was having a good day. I thought.

And then she asked me about the tumors.

And the healthcare bill.

And I just lost my shit. utterly. sitting there in that chair - sobbing.

I think I'm doing better and that I'm processing things and "moving on" and then it just comes up and smacks me in the face. You ever see those old Tom and Jerry cartoons where one of them would grab a glove and SMACK the other one across the face with it? That's exactly what it felt like.

I don't know if I'm ever really going to come to terms with all of this. I don't even know if it's possible. Maybe the best I can do is just manage it day to day - hour to hour.

Cali earthquake

They had an earthquake tonight in Baha California - 7.2 on the scale.

That's pretty tough but...well...I hope that is all there is to it. We need the earthquakes to stop.

I'm off to Big D

I have a doctors appt in Dallas tomorrow so I'll be out of pocket for a day or two. I am seeing an ENT at UT Southwestern about the Bell's Palsy. After my appt with him then I see a therapist there who specializes in Bells. I don't know if they'll be able to help me at all but it's worth a shot - right? *sigh*

I am better and the Bell's is much improved...but. I still have residuals, my face is still a bit *off*, and well, my mouth is still...just...weird. Maybe it will still continue to get better. I'll see what the experts have to say and will report back.

I'm taking Piper down there with me - so wish us luck. Or say a prayer. Or both. Oh and she is 10 months old tomorrow. I can't believe she's so big. I love her more than there are words to express.

Hope everyone had a good Easter. Ours was fabulous. The trees are amazing and the flowers are gorgeous and this weekend was perfect. I am grateful.