Whats It Like?
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  Whats It Like?

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Several years ago, someone ask me what it is like to be a man, and have fibromyalgia.  I said, “Well, it is like Samson, when Delilah cut off his hair.”  Later on that night, I wrote this in my journal:  (Journaling is a good way to get emotions out, and to realize things, to accept, to understand....)

Surely, someone gave this disease to me. I know they did. If I ever find out who did this to me, I want to make sure I pound them into the soil.  Any more it seems like anger is all I can feel.

What happened to the other emotions? When did love and compassion get replaced with anger and irritation? Who did this to me? Sometimes I get so irritable, I just know that hitting something would help. 

Hey, I am a man, the center of my universe, I am supposed to be able to do anything. The head of my family, the warrior, the hunter, and the king of the hill.  People used to respect me, and now, how can anyone respect what I have become? Weak, frail, in pain night and day, tired all of the time, and not enough energy to do anything.  Who could respect anything like that?  Who could love anyone like that? 

This pain, it never goes away. When does it end?  Night and day, never ending, relentless in its endeavor to take me down.  I thought at one time, I could take anything, I could fight anything, how can you fight something that is all in your head?  Or that is what the doctors say.

Why do the doctors treat me like I am almost some type of subhuman genetic freak of nature?  And why to they treat me like some drug addict, just trying to get more pain pills? I am not a drug addict, I am not some piece of worthless flesh, bone, and blood. I am a human being, why, oh why, can’t the doctors and other people see this?  Sometimes when the pain is so great, I lash out in anger and almost hate, at the very people that are left that care about me.  This is not me. What happened? And when did it happen? 

I used to have friends but now, it seems like I have said “Well, I don’t feel good today, so I am going to have to stay at home” one time to many.  Everyone assumes I am “sick“ so they never call anymore.  I feel so alone, and at the same time I don’t want anyone around me.

Afraid?  Yes, I am afraid. It is a word I never thought I would use, but I am afraid. I am afraid of being alone, being forgotten, being unloved and unwanted, and I am terrified that I will never be needed again, for anything. Work?  That is almost funny. I’m losing one job after the other, because I can’t seem to work eight hours a day any more.  I am losing my ability to “hunt” to bring home the food, the act of contributing to anything anymore. I just can’t do much of anything that requires endurance.  I know someone did this to me. They had to. I don’t deserve to live like this.

After a while, it finally settled in.  Now, in some demented way, I don’t know what life would be like without the pain.  It has become some kind of companion, in a way. Something which I am accustomed to, but willing to drop by the wayside in a heart beat.  Now a degree of acceptance has set in, and I have learned volumes about compassion.  I still feel like no one but someone with fibromyalgia can understand the pain, but I am compassionate towards anyone’s illness now, regardless of what they have.  I realize people can struggle with pain in what seems like a lifetime, and it has only been one day. I accept that when I awaken the next day, I will get to do it all over again.  I have understood now, that faith in God, humor, good doctors, and renewing that “hunter/warrior” instinct is the key to surviving fibromyalgia.  And most of all, love of mankind.

Even though, I sometimes hang on to the belief that someone gave it to me, I don’t’ have to take it out on the world any more.   I can be a part of the world now, just more on my terms.  I can say no, without buying tons of guilt. I can be a part of anything I want, but now the part is smaller, and I can accomplish things. It just takes a little longer.

So I'll end this with one thing. Samson did grow his hair back.