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'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.

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.

Kindness of Strangers

I had my MRI and appointment with my Neuro Surgeon yesterday. That went as well as it can when you are placed in something resembling a coffin all the while knowing they are looking at TUMORS in your brain.

Ya. So the valium helped.

I laid there in that thing and the entire time it was buzzing and clicking away I was repeating to myself over and over, "the tumors will be smaller or gone, the tumors will be smaller or gone." Over and over again for the entire 38 minutes I was in there.

I got out, got dressed and they handed me my films. I pulled the first one out and looked at it. And the largest tumor was immediately visible. Not smaller. Still there. I burst into tears.

Then we walked over to see my Neuro Surgeon. His nurse, Mike, came in first and did a lot of preliminary things with the images and then spent some time talking to me about how I was feeling.

Here are the Good Things from yesterday

The tumors showed little to no growth. That is awesome. My brain still seems 'happy' with the tumors right where they are - in other words - the tumors are not causing the brain any problems. At least not yet. Doc said again, he will take them out if I want him too but he doesn't see a reason to go in if we don't have to yet. I totally agree. People keep asking me - why don't you just have them taken out. Well, a few reasons. It is brain surgery. Things can go wrong. And anesthesia. Things can go wrong. Also, they can't get them both with one surgery. It would have to be 2 separate surgeries; 2 separate ICU stays; 2 separate recoveries. There are lots of different complications with these surgeries, anti-seizure drugs, double vision during recovery, the inability to walk and speak sometimes, not to mention the blinding head pain - lots of things. Yes, the tumors would be out but I would be recovering a long time. And I have 3 kids - 2 of them very small. I can't even begin to imagine how I would do it and take care of them at the same time. Also I would still need the MRI's every 6 months to make sure the damn things hadn't come back - because Meningiomas tend to reoccur. So again - why DO all of this until I have to DO all of this?

The So/So news

We talked about the continued facial weakness. I asked about the Bell's palsy treatment facility there and he said yes, they had one, but in truth, they wouldn't be able to help me. He explained that they rate facial nerve paralysis on a scale from 1 to 6 - with 6 being total paralysis and 1 being totally functional. He said right now I'm at about a 2. At the BP treatment facility - their goal is to get their patients to a 3. So I've already naturally healed past the point they would even hope to get me. He said the most they could do would be to put some botox injections into my right cheek to soften the hypertonicity on that side.

He looked me dead in the eyes and said, "I know you don't want to hear this, but you will probably always have an asymmetrical face. There really isn't anything else we can do to improve where it is today." Ok. So I have to just accept what it is now. But it is still really hard. You know there are women, lots of women, out there who are my age and older - who have perfectly symmetrical faces who have NEVER accepted how they look. If they had there would be no plastic surgery industry. I've only had this for 8 months. It may take me a while to totally come to a place of acceptance. I still hate it. I still want my old face back. But in spite of everything, I still have some hope that maybe it will continue to heal, if only just a bit more.

The not-so great news

He said, "My dear, medically you never want to be an unusual case. But you ARE an unusual case." *sigh* I responded that I had always been an over-achiever. He cracked smooth up. And then he talked about the tumor on the eye. Well, it is on my right optic nerve sheath to be exact. These are EXTREMELY rare. And because they are so rare there is not much data on them. There isn't that much information out there on how to treat them. And there isn't that much data out there on what treatments work better than others.

This is what they do know. If it continues to grow - it will take the vision in my right eye. He said it could take as long as 15 years for that to happen. Or it could be 5 years. OR it could just take my color vision in that eye and that is all. I will tell you that I am already color blind in my right eye. I wasn't 3 years ago but I am now. Contrast in colors are hard for me now. OR it could stop growing altogether and leave my vision as it is now.

Because this tumor is wrapped around the optic nerve it is inoperable. Also radiation is pretty much out of the question. Now, he said that if we did radiation it could improve my vision for awhile - maybe 5 years. BUT radiation of this type, at this intensity, and in this area tends to cause FURTHER tumors later on. He said if you were standing here and you were in your late 50's or 60's - I would say that radiation would be ok because those further tumors don't tend to show up for 15 - 20 years. BUT you are 37. I don't want you to have further tumors in 15 - 20 years. That is just too young. He went on to tell me that he could refer me to see some radiation specialists and they would probably recommend radiation for that eye. But he also told me to remember they are basically selling a very new technology. They don't even know what all the ramifications would be yet. He said again, in his experience, he didn't know if it would be worth the risk of the future possible problems.

Then he told me the rest of it. With no treatment I probably have 15 years or so before I go blind in my right eye. He also said though that it might not be that long or it could be longer - depends on how fast the tumor grows. These tumors can grow large enough that they can cause the eye to actually bulge out of the socket causing further facial deformity. He said if that happens - they would go in and surgically remove the tumor and the optic nerve hopefully returning the eye back to its normal appearance on the face. He said that the surgery is very tricky and difficult and that of course, I would be blind in that eye when I woke up.

It is a lot to hear. And a lot to process. In 15 years Max will be graduating high school, Pip will be in high school, and Alec will hopefully be graduated from college and starting his life. These are all things I want to see. Without having an ugly bulging eye or being blind in one eye. I wish it were all different.

For someone who is as much of a control freak as I am this is incredibly hard because there is nothing I can do about any of it.

Never under-estimate the power of Kindness

This morning at 8:10am I got a phone call from Mike - my NS's nurse. He came in and visited with us the last time we were there back in September. He remembered us when we got there yesterday. Anyway - my doctor is referring me to a NeuroOpthamologist for my eye. He said he was brilliant and they were going to call in some favors to get me in to see him. He also said he was going to go ahead and set up some appointments for the Bell's too - couldn't hurt to try. Mike called me FIRST thing this morning to tell me he had already got the referrals going. He gave me the names of the 3 different people they want me to see and asked me to call him as soon as I got the first phone call from one of the referral docs. He said he was going to take it from there and make sure that all the appointments were scheduled on the same day, or on two consecutive days, so that I could do it all in 1 trip. How awesome is that?

And then he sat on the phone and asked how I was doing with all of it. He told me about his conversation he had had with my doc this morning and then he let me talk. About all of it. He told me I wasn't crazy and that I was handling it all remarkably well. He told me that I was still very pretty. He said he knew that the Bell's was awful for me but that frankly I was pretty "genetically gifted" to have Bell's and an asymmetrical face and still be beautiful. He told me again that they were going to do everything they could to help me. He didn't have to do that. I know he was busy and had other things to do but taking time and listening was a very kind thing to do. And it made me feel like they care about me and my well being.

They are wonderful - all of them. The nurses and my Neuro Surgeon - they don't talk AT you - they talk to you and with you.  Yesterday my doctor let me cry after he told me everything - told me it was normal to feel like I do, validating my feelings, and said - flat out that it sucks. And it isn't fair. But said that I was handling it all amazingly well. And he gave me a big hug as we left. I don't think you could ask for anything better in a physician and his staff. It is sad to me that this is a rare find in a physician these days but I am so blessed that I was directed straight to this office. So now we wait. And pray. And continue to hope.

Wordless Wednesday - the Squatters

Here they are - the little squatters in my brain.

This is the largest of the 3 and located in my right frontal lobe. These images are like looking in a mirror - it is located on the right side of my brain but in these images it will look to be on the left. The tumor is the large white spot.




This one is the small white spot located right behind my nose - inside my brain - in the Crista Galli. It is the smallest of the 3.





This is the one located on my right optic nerve. Again, these images are reversed so looking at it - the tumor appears on the left side behind my eye. If you notice - the one on the left - the nerve is "lit up" and white - on the right side it is not - the "lit up" part is the tumor. It has wrapped itself around my optic nerve and as it grows is squeezing the nerve and causing me to loose my sight in that eye.

I know it is "wordless Wednesday" but you can't really post images of tumors without some explanation. Thought it might help to have images in mind in which to direct the healing.