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Tuesday, April 12, 2011


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

1 comment:

  1. Keep on trucking Sherri! I do not have the medical problems that you do; but, when I am feeling down I look for new things to do. Yeah...get it out by having a good cry or scream; but, after that pick yourself up and start living! Find some hobbies to do with a a group! Book club? Exercise group (anything you are willing to do no matter how simple)? I am sure you have a talent to share! I am rooting for you! ;) - Jason


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