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Tuesday, April 12, 2011

Outlook

When I am alone with my thoughts I sometimes realize how fortunate I really am….but when I start to write about living with NF, all the negative aspects of this condition come rising to the surface, like a bad vapor. Yes, there are some real life challenges with this disorder. But life is full of challenges, whether you are healthy or not.


I often tell people I am luckier than most people simply because I have a roof over my head, food in my belly, and friends and family who love and support me. When you look at the planet as a whole, that is huge, folks. Not to mention that I have access to healthcare, remiss though it can be at times. And the challenges I have with certain providers pale in comparison to not having it at all. I get that.


I know some things to be true. I know, for instance, that the body I was born into is not a reflection of who I am. How I handle having this body is. Sometimes I handle it well, other times, not so much. It’s like that with everything and everyone, no? Whatever the challenge, be it relationships, career, money, family dynamics, dieting, whatever….it’s not about the challenge per se, it’s about how we handle it.


Kind of like the difference between pain and suffering. It took me a while, but I have known for quite some time now that there is a HUGE difference between those two things. Pain, and I mean the kind of horrific neurological pain (which no one can seem to figure out how to help it) that people with NF and other neurological disorders endure, doesn’t necessarily mean suffering. I don’t even connect those two things together anymore. Suffering is a choice. The pain is just there, doing it’s thing, trying to get my attention and usually doing a pretty good job at it. But suffering? That’s different.


You know how you can tell that’s true? If you’re pain is particularly high and there is something else going on in your life; your lonely, bored, angry, etc., boy do you suffer! I mean the screaming kind of suffering. I once wrote a piece on it which I put in the post below this one. We all have those days. But if you are distracted, if you have a friend over or you’re reading a good book, or you just had your favorite meal, the pain lessens a little bit. It doesn’t go away necessarily, but it recedes to the background. At least it does for me.


I haven’t posted much lately because I’m tired of being so negative all the time. I have had so many physical challenges lately, it’s almost laughable. The NF, of course, cancer in 2005, and in 2007 I had surgery for another rare disorder involving my stomach and esophagus. Shortly after that, I fell and broke my foot. and was in a boot and have a walker. And you know what? I thank G-d everyday that I didn’t break a hip or my neck. In my condition, either or both could have easily happen. I give thanks for it every single day.


Now it's 2011 and  I am dealing with more medical problems...ones I don't want to even write about here.  But I will keep you posted.  Yikes

Thursday, April 7, 2011

Which Voice Today

For the last five years or so, I have heard, and felt, a small voice in the back of my head, pushing me forward. Behind it, there has always been a smaller voice, urging me to let go. That voice, in horse-racing terms, is coming up from behind…and loudly.


I have always acknowledged, but at the same time ignored, that smaller voice. It scares the hell out of me, because if I listen to it, I fear I will be dead very shortly. The conundrum for me is that I always say that I want to die, that I want to go Home. So why then, does this voice frighten me so?


The stronger, “pull yourself up by your bootstraps” voice is the one keeping me alive and independent. It’s who, or what, I credit my ability to function at all. I hang on by my fingernails, so scared of facing letting go. Because I know what it means. It means confronting all the anger, all those feelings that I keep so bottled up inside.


People always tell me how incredibly far I’ve come in the last five years or so….how I’m not the person I was when NF struck me down, finally, 11 years or so ago. But I lost a lot when I lost that person. Anger, yeah, I got rid of a lot of my anger, and that’s what people refer to when they talk about how I’ve changed. But I also lost that part of me that can feel to the marrow. If I let myself feel that way, I will die.


Because I’ve lost so much, it takes my breath away. Yes, I have a lot too, in the way of friends and family. But any rational person will admit I’ve lost a lifetime. And anyone who thinks I’m playing a “poor me” scam can go jump off a bridge. Ask yourself if you would change places with me, or what you would do if you were in my position, and your teeth would rattle. That’s if you answer honestly. Or think about it for more than two seconds. Hell, if someone had told me many years ago that’s this is where I’d be right now, I think I would have killed myself. One can’t even imagine.


The endless, chronic, intractable pain that is so in the stratosphere of discomfort no words can describe it nor pills control it, adequately. A friend recently told me, after I said I deserved an Oscar for my performance of being okay, that she knew it, I didn’t fool her. She said I wasn’t that good of an actress. She laughed I didn’t respond, but I smiled to myself, thinking, that statement in itself told me how good I was. You see, no one can even begin to imagine, though this person thought herself capable. She thought herself capable because she is my friend, and couldn’t imagine that I was going through something awful enough for her not to know about. Because she herself went though some unspeakable things. But it’s not the same.


It’s not the same for many reasons, but mostly it’s not the same, and this is what people really can’t get, because there is no end to it. Ever. No ‘getting through’ no other side, no ‘bad period of time’ thing. Never ends. Never, ever, ever. So you don’t get to experience an end to it. Not until you die. Hopefully.


Which brings me back to the small voice that is pushing itself to front and center. The one that is so tired of pretending, so tired of hanging on, so tired of the pain, so tired of no answers, so tired being tired and so afraid to look at all that she’s lost. So lost herself. So ready to let go. So ready to go Home. So ready to die.


I’m scared to let her in, to win the race to the front of the line. To really let go would mean more than I can get my mind around. Because I would be giving up who I say I am. I would need things that I’m afraid my family wouldn’t or can’t, give. They give so much already, and no question they are there for me emotionally and financially. But if things progress for me physically, there is no question I wouldn’t be living with either of them.. They would put me away somewhere ‘for my own good’ and come visit on occasion. Don’t mean to sound angry….I just watched my mother move in a nursing home, and I’d sooner die. Hopefully, I will.


They always say that my NF is teaching them, too. Perhaps so. They are good people, they help me a lot. But we never did talk about how our mother’s constant illnesses effected the family, even after I brought it up specifically at the meeting with the social worker. They won’t look at it. They wouldn’t acknowledge the similarities. They always tell me I’m ‘nothing like that’ meaning needy. So I hang on. I pretend. I can’t be needy.


But I am sick, and dependent as well. Those are loud, desperate similarities, and best they look at them or this lesson of illness will come up again and again.


And I best let go and hope for the best.

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