Wednesday, August 4, 2010

Alone in this Big World

No one understands. No matter how you explain it or how others explain it no one understands. It seems like the more often people say, “I understand what you’re going through…” the more and more I get frustrated. Until you experience the pain day after day, night after night, minute after minute, please don’t tell me, “I understand.” Now I know that I shouldn’t say that NO ONE understands because other trigeminal neuralgia sufferers do understand the pain and suffering I am going through. It is my hope that the dedication to this blog will allow a place for other TN sufferers to show me that they do understand what I’m going through.

I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.

Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.

The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.

For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!

2 comments:

  1. Once again, well said. But you are NOT alone in this world although it seems like it most of the time. THis blog and forums surely help a little, at least for me. Saying "I understand" is equivalent to saying that when someone's child has passed away. You can "imagine" how awful it is, you can be "understandING", but you cannot understand, unless you have walked in those same shoes. (I am not comparing this to such a tragic event in anyway of course, just an example of the "I understand" phrase, no offense to anyone who has experienced such an unimaginable loss.)

    Be glad your family TRIES. It's all they can do short of testing your ice pick analogy (those are my descriptive words EXACTLY). At least they try and are reading and learning with you. It does help to have the information, at least we look less crazy and dramatic when it's in black and white in some medical journal, right? But as far as your coworkers go, that's just heartless and cruel and they should know better than to laugh at anyone suffering from anything no matter what it is. This is not elementary school anymore. Your boss needs to step up and set a better example. Have they been educated on TN at all? I know I find myself downplaying it to people that are not close to me because frankly, it's too hard to make sense of even to myself sometimes. And I don't want to be the endless whiner. So I say "I'm fine. or Some good days, some bad, I'm ok." We'll see" meaningless words like that. But somedays I wonder if I am doing myself an injustice in the end. If I had cancer or MS or Diabetes I would not do that, I would say what it is, and clearly explain my condition and my limitations and expect people to treat me well and with dignity and understanding. Why don't we expect that, deserve that? Maybe it needs to start with us. You have me thinking, now that I am typing this. The change needs to start here, at least for me. If I keep sugar coating it and downplaying it, then I guess I can continue to have people act like I am okay as long as I try and pretend that I am. I actually said once that I wished I had visible scars on my face so that people could SEE that something was wrong, that it is NOT "just a headache" or they would stop trying to offer me advice that is irrelevant for my condition. Sorry, I am on a rambling tirade on your blog, lol.

    But back to some other things you have said: the breezes, the noise. All to be avoided, it's like we must control what few things that we are able to, no? SO, that sometimes means for me quiet time in my room, earplugs (my new best friend with me at all times - I can now endure teenage music volume and movie theaters). Ceiling fans and A/C will continue to be my nemesis, at least until Old Man Winter rears it's ugly frosty head, then I will be back to hoods and warm scarves. I have one of those masks that you put on your eyes and it fits nicely under the palm of my hand, barely visible, and when warmed in the microwave or even just the heat of my hand, helps, allowing me to look almost "normal", just as if I was sitting with my head leaning on my hand. Especially for a work situation. Maybe give that a try. Or embroider "BITE ME" on the blanket that you put on your head at work? Gotta laugh or we'll cry, right?
    Keep on blogging. It's a slow start, but it will pick up, I know it!

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  2. oh and nice job on the links and videos, very educational and helpful!

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