She describes it to me like trying to keep your hand in a bucket full of ice water. The problem is that you can’t pull your hand out even if you want to. It’s just always there burning you with excruciating pain inside your bones but also on the surface of your skin. She has a code with which she describes her days to her caretakers by the level of fire in her bones; a good day is just a bonfire, a bad day is a house fire, and a forest fire, is a horrible day.
It doesn’t go away. Even when she needs to take a shower or a bath. As a matter fact, it becomes so intense when water touches her skin and changes her inner temperature that sometimes she has to lay on the bed shaking with tremors for 20 minutes to a half hour afterwards before her nerves relax enough to allow her to return to normal.
The brain numbing pain doesn’t stop when our non-communicative eight year old daughter with severe autism insists on being held and tries to climb up my wife’s tiny frame. Or when she gets frustrated and slams her forehead into my wife’s hips or stomach multiple times.
Even a touch on her face or arm which is a sign of affection to most people, is like a personal attack. Clothes or a blanket which comfort or keep most of us warm, are abrasive like sandpaper on her already irritated skin. A cold wind cuts through her like a razor blade.
I watch her limp across the kitchen with her stylish purple cane in one hand and our one year old baby on her other arm and realize how frustrating it must be to want the fulfillment you get from being a mother and wife and yet have to subject yourself to a permanent hell in order to find it.
It horrifies me to have to understand that this disease is considered terminal and the leading cause of death is suicide. I have to look in her eyes and realize that the only reason she wants to live is because of me and the children. Sometimes I feel guilty for being too selfish to consider it, especially, when the pain gets so intense that I can see the switch flip and the insanity begin to creep into her eyes.
Even then she doesn’t complain. She may cry and beg me to put an end to the pain, but she’s never stopped showing me the most amazing kind of love even when a hug hurts. Even kisses have to be gentle but she never hesitates to dish them out to all four of our lively, high energy children.
The craziest part is when you rush her to the emergency room, pale and eyes sunken into her skull and the nurses and doctors ask you, “What does she have again?” Then you realize that the chances are really good that they just learned something new about their jobs, that your wife is their guinea pig and that the treatments they are giving her are probably the first thing that popped up on “Google.” That they make her stay the obligatory three days and then discharge her without any explanation even if she isn’t feeling any better then she was when she came in.
The pain doctors know what she’s going through but they still mess up her perscriptions on a regular basis. What would you do if you had to watch your spouse go through pain worse than childbirth for two weeks straight because a professional simply messed up? Just this weekend we spent three days counting down the seconds until the pharmacy opened on Monday, just to have to wait another hour and a half because of a technicality.
That’s still not as bad as the fact that she’s has been called lazy and told that she needs to get a job by members of her family. I don’t necessarily blame them for the misunderstanding because I was guilty at first, what I blame them for was not giving her the benefit of the doubt long enough to learn the truth like I did. I watched her tremble for an hour in severe pain and shock because her children needed her attention and yet she’s been blasted and humiliated in front of her peers for not being good enough.
The worst part is the fact that she’s scared to park in a handicapped spot even though she has a sticker, because people have verbally attacked her because she is not in a wheelchair or doesn’t look disabled enough. That’s a good lesson for everyone; that judging is always a bad idea until you have all the facts. If you see her walking down the street you will have no idea that her fingers are burning from having to hold the makeup brush, her scalp screamed from the bristles tearing through her hair, the energy was sapped from her body from having to bend over and slip into her pants and her swollen feet don’t fit inside her shoes but she made herself look pretty because you needed her to. Because it would be impossible to give you even a clue how much pain she is in if she wasn’t faking this smile!
She’s not this skinny because she has an eating disorder. The opiates that she takes that barely rub the edge off the pain, make her so nauseous that even the thought of food can turn her stomach. I’ve made trips across town to repurchase a food article because it was the first thing she had eaten that month that didn’t make her vomit, just to have it come right back up.
She’s not asking for your sympathy or your assistance because she’s proven that she will outwork you no matter the cost to make her family happy and give us everything we need. She’s just asking that you be informed before you start throwing stones. If you have ever been to hell and back, then you only understand half the pain she’s feeling right now and she’s the one with the bigger smile on her face.