Silence: A Great Teacher

A woman from the local NF chapter emailed me and asked if I would contact a woman (I'll call her "N") with NF. She lives in my state, but like my other friend, is too far away to visit in person. But we gabbed for a long time on the phone. She is only 30; has four kids and frankly, I don't know how she does it!! Her husband is in the service and sounds like a doll in terms of helping her and supporting her and her challenges. I am so lucky I was able to work for 20 plus years before it got too bad to do anything much more than lay flat on my back. N has a family member who gives her a hard time about her pain. Tells her she too, is in pain from firbromyalgia but manages to live her life just fine, thank you very much. She tells her if she just would get up and move around she would feel better.


My heart broke in two listening to her describe the conversation. More like a berating than a conversation. It is impossible to describe what this is like. People just don't understand neuropathic pain issues. Telling someone to "just do it" is like telling a blind person that if they just looked harder, they could see. It doesn't work like that. First of all, we all have different tolerance levels. But that's not even the issue. The issue is, there are tumors pressing on the nerves of the spine, and it hurts like hell!!!!! I really don't know what is wrong with people; if they are just afraid that it might be contagious, or if they feel they are better then the sick person because they push through the pain when someone else can't....it's complicated and beyond me.


But this much I know; you can't educate those who don't want to be educated. When someone talks to you the way she spoke to N, you have to smile, say "thanks for sharing" and change the subject. Or stay silent. Silence is very, very powerful. When I was in sales, I used it all the time. Said my bit then shut the hell up. The person I was trying to sell something to would either pony up or not. But there is something to be said for staying quiet. More importantly than trying to sell someone something, it gives the person a chance to work it out in their own head. And silence can make the other person see something they may not have been able to see before. Talking gets in the way, and trying to convince someone that our pain is real is a waste of valuable time and energy. So, my dear new friend, save your energy. Stay silent. And pray for her. She needs your help, dear one!!

Chasing (But Seldom Catching) My Thoughts

My dad is currently watching his partner dissolve from the same disease that took my mother; Alzheimer's. It breaks my heart into pieces to watch him go through that again...and doing so 1600 miles from me and my brother and sister. It is a devastating disease. I have my own disorder that is eating away at me, but since my mother had Alzheimer's I am fearful it will chase after me. It is starting to do so already.


Yes, part of it is a menopause thing....but when I watch a thought literally vanish from my brain in a matter of seconds, it is beyond frightening. My short term memory is so bad I can't even describe it. But watching thoughts dissolve...that's just not right. It scares me to no end. I pray my NF will kill me before it becomes too much of a problem, but given my history and the things that have upset my balance, I don't hold out much hope of dying before that happens.


I mean, it's one thing to have a health problem that is killing you, but to feel like something is killing you but your AREN'T dying; well, that's just not right either. As far as anyone knows, no one in my family has had NF. It was a spontaneous gene change. I am thankful no one else has this thing because it's no picnic; I try to be strong but sometimes I just can't be. Being in crippling pain all the time and trying to smile through it is a challenge, to say the least. But if I don't try and be brave, the few people who are still in my life will probably disappear.


No one wants to hear about it and I don't blame them. But watching thoughts dissolve like condensation on a window is beyond belief. I'm scared shitless. I want to die before this is full blown. And I may make that decision on my own, if my body doesn't make it for me. I can't imagine not being forgiven for that, if there is such a thing as "someone" out there who forgives. For crying out loud, how much am I suppose to take? Breast cancer? Survived. Acalasia (another rare disease) survived. Thyroid problem? Being monitored Urinary tract infections from catheriztion due to a neurogetic bladder? Always. Always fighting that one. Can't think of them all, but you all get the picture. This is not suppose to be a 'poor me' thing. I don't even care anymore. I just need to vent, and this is where I do it. If someone doesn't like it, leave and go read something that will make you forget truth.