There's an elephant on my face: It's all relative...

Like most people (I hope), I have random thoughts that pop into my head at times when I've been thinking about something specific or experiencing something. The other day, I randomly thought "this is all relative....but what does relative mean?" I tried to remember what the theory of relativity was and ended up searching, and reading, about it for quite some time. One of the points about Einsteins theory of relativity that struck me was that everything is relative and is experienced differently by every person. That is, if I am standing on one side of a room with a candle in the middle, I will experience the shadow and glow relative to my position and another person will experience it relative to their position.

Now, why is this important. This pain, this horrible, horrible pain, is something I cannot describe given all the words in the dictionary. However, I can say that it is like something. A kiss from my daughter on the cheek feels like being electrocuted. The shocks that come at random can feel like a knife stabbing me in the face. Ultimately, this is something I am experiencing and I cannot expect my family, friends and co-workers to fully understand it. I can however try to understand that they too are experiencing my reactions to this disease and the symptoms thereof. This understanding is necessary, as we all know that no man is an island. The difficulty though is that most people have the natural instinct to try to offer advice since they are not sure what their response should be. Although advice is appreciated, when pain is hovering between 8-12/10 for days on end and the Neurosurgeon and other specialists are all giving bad news.... advice can be the last thing I am able to handle. I have learned now that someone with a chronic disease often just needs a message of "I'm here" "hugs" or "I'm thinking of you" instead of "why not try this" or "I know someone who had that...they did this" or like I heard yesterday, "Let's face it, this won't kill you, so you just have to accept it."

Don't get me wrong, I understand that from their perspective, their reality of the situation, they believe that this is the correct response. I appreciate the place where they are coming from.... all I ask for though, is that they accept that right now my reality is that it's not going to get better because that's the nature of the disease and my particular situation, my life as I know it is changing and that's hard to accept, my family and closest friends are affected by this and that hurts, my work is suffering and I personally struggle to accept that....and finally, 24/7 pain is not living.
But then again.....that's just my reality.