But now I must get to it. We're all the way up to the letter H already, and I finally came up with something for it. Some of you may be able to empathize with what I'm about to say, but hopefully most of you will not even believe some of the horror. It's all true, sadly.
The helpful husband part isn't sad, so much, as a learning experience for me and my spouse. My husband is one of the most kind-hearted souls I've ever had the pleasure to know. He is a constant blessing, and I shudder to think what life might be like without him. He has stood by me through, hopefully, the worst, and has showered me with love and affection and more useless gifts than I could ever dream of. But there was a time in my life when I didn't fully appreciate his generosity. Hard to believe, but true.
When RA begins attacking your body, and rearranging your parts into awkward angles and makes your hands look more like fish flippers than human appendages, you begin to doubt your self-worth. Add in the pain, fatigue, new found limitations, and did I mention pain? You begin to feel, and possibly wish, that the world might have been a better place without you.
Now add a spouse into the mix that can't bear to see you hurting. He can't bear to see you struggle with simple, everyday chores like brushing your hair or dressing your child, and everything begins to multiply. He begins 'helping' you by doing many of your chores for you. I say they are your chores, simply because they are so often the little tasks that wives and mothers allot to themselves. Perhaps it's just something I learned from my mother, but running the household and caring for the children was my job, even though I had a full-time job outside the home. Sure, my husband could help by washing dishes whenever he wanted to, or occasionally preparing a meal. But that didn't mean he could touch the laundry, or dust the furniture. Or dress my child and prepare her for daycare.
Ha! Shame on me for believing I was dispensable. My husband not only proved he could be a soldier and defend our country, he had the audacity to prove he could do it and manage all of my jobs, besides. The house didn't fall apart because I was quickly becoming an invalid. It was thriving! It really ticked me off to see how effective he was, even though the cost was heavy to him.
I couldn't get past the feeling that he was making me feel useless, even though it wasn't him. RA may attack the joints, but it also attacks your thought processes. If not, I would never have been convinced that I could cut off my own arm that night - but that's another story.
Seeing my husband handle things so smoothly should have been reassuring to me, and it was in many ways, especially when all the hospitalizations came into play a short time later. But at the time I resented his effectiveness. I needed for him to need me, and I wasn't getting that. I told you he's amazing, didn't I?
Eventually I told my doctor that my husband was being a problem - shame on me, but I did. He misunderstood my meaning and told me he would have a talk with him if he couldn't understand how sick I was at the time. I quickly set him straight, and he decided he still needed to talk with him. So we all sat down together and discussed how I needed to have the opportunity to attempt doing things on my own, with the understanding that I would ask for help when, and if, needed. It's surprising how that changed my attitude. I still needed lots of help, but I was giving him permission to help me rather than having my freedom taken from me. Maybe that's one of the reasons he calls me a control freak, I don't know, but the system worked well for us.
As our time in Europe progressed, however, so did the RA. I was missing work pretty regularly, even though my office job was pretty easy and my co-workers and bosses very understanding. I began getting ill in other ways besides just the RA. Pneumonia. Kidney infections. Bronchitis. And I was so very, very tired.
Finally I ended up in the hospital - several times, in fact. Aside from the real illnesses, I just needed time to rest, go to physical therapy sessions, and take a break from the reality called life. I hated, hated, hated, being away from my family, but I was beyond putting up a fight.
Military hospitals may have changed since my last encounter with them, and I certainly hope so. I know some may not believe the tales I could tell, but they are absolute truth.
I was fortunate to be on a ward most of my stays. I say fortunate, because the hospital is a boring, boring place if you aren't too sick to care or notice. I met some very nice ladies during my stays, and we were able to help and encourage each other. One of my roommates was in a full body cast due to a broken neck she received coming in on an ambulance run from the field. They were taking a patient in, but there was room for a few extra riders, and the women wanted a chance to shower. The run was at night, however, and they weren't allowed to use headlights. They were driving through woods, and when the ambulance driver didn't see the tree in time, this woman had been thrown through the windshield. She recovered, but it took a long time.
Another ward mate wasn't an enlisted soldier. She was a spouse, and had just delivered a baby prematurely due to some kind of accident. The baby was okay, but the mother was paralyzed from the waist down. I laid there in my bed and listened to this stupid doctor tell her that she was never going to walk again. That she could never care for her child. That she should never even consider having another child. I wanted to get up and hit him with something heavy and sharp! When he finally shut up and left, the three of us gathered around her and told her what we thought of him and his negative ideas, and that she could do everything she needed to do for her child. I was terribly upset about his methods, whether he could have been even remotely correct, it was still wrong.
Then there is the story of New York. I never did learn the boy's real name, but that's what they called him on the night shift. The night shift was a special breed. They would come to our doorways and shine their flashlights into our faces until the light woke us up. Then when we moved away, they would shut the light off. I asked one of the nurses why they did that? She said it saved them the time and trouble of coming into the room and checking on each patient. If we moved, then they knew we were still alive. HELLO? What's wrong with that picture?
Anyway, I digress. I met New York one night while we were playing cards at the nurse's station. That was one of the perks of being ambulatory and not sick enough to be without function. While we sat there, a very, very tall young man walked down the hall toward us. He was wearing one of those halo things on his head. Everyone smiled and said hello to him and he responded in kind before moving on down the hall.
I asked why they called him New York. Well, that should have been obvious, but I mostly just wanted to know more about him and why he had that weird contraption on his head. I had never actually seen one before.
They told me his story. He had been hurt in some kind of accident - probably on an ambulance run, is my thought - and insisted he couldn't move his neck. The doctors had taken x-rays, but couldn't find anything wrong with his neck. But he kept insisting it hurt really badly and he couldn't move it. So they put him on light duty for a few days. They figured he was simply faking it and that he'd come around in a day or two.
So some wiseguy had decided that New York was definitely faking it, and he was going to prove it. This was after they sent him back to his unit on restricted duty. They set up a basketball game, with the idea that eventually someone would throw the ball directly at New York's head, and when he ducked out of the way, they would be able to prove he was faking the whole thing.
It didn't work out that way. When they threw the ball, it hit him - the man couldn't move quickly enough to avoid it. It knocked NY out cold. When he woke up he began screaming about how bad his neck was hurting. So the doctor asked to see the x-rays. Up until that point, they had done everything based on the radiologist's reports of no damage. Turns out the radiologist was wrong, and NY's neck had been broken from the get-go.
That's enough for today. I hope you've never had an experience like New York, or the unfortunate woman who was told she could not function as a parent. I hope the world treats you kindly, and that you have the strength and the ability to repay in kind.
Blessings.
Harmony
Wow! What a powerful post. I have some very loosely-based theories on people who develop RA. I wonder if control could be one of the factors? I know that there is a reluctance amongst the medical profession to identify emotional traits, but I must admit, I am very curious about that.
ReplyDeleteYour hospital stay is worthy of a separate blog, I'm sure. Wow!
1. That doctor needs to learn the value of hope and encouragement re. the paralyzed mom. It's good that you were able to encircle her with your love, suggestions and encouragement.
2. Re. New York - a good lesson in demanding a second opinion.
Marianna - I'd be interested to hear some of your thoughts concerning control and RA. Would you possibly be interested in being a guest blogger? I realize I have a very small audience, but sharing ideas can lead to better understanding sometimes.
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