by Band Back Together | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver |
Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.
First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.
Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.
My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy) in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed. He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile. AND THERE WAS NOTHING I COULD DO TO FIX IT!
Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS. (She’s thirteen now).
Really, PMS, dufus?
Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.
Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.
But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.
We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler. I can cut wood to heat our home if necessary. I can shoot a gun. A country girl CAN survive, after all. I’ve learned I can be stronger physically and mentally than I’d ever thought. I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.
Most days I am thankful for the blessings we have.
Some days, like today, I’m angry as hell.
by Band Back Together | Oct 8, 2010 | Addiction, Addiction Recovery, Adult Bullying, Alcohol Addiction, Anger, Blended Families, Bullying, Marriage Problems |
The man I married was a drunk. Hm, he used to be a drunk? Well, what do you call him now? When his then-wife served him divorce papers, not a month after their baby girl was born, he lost it. He fell head first in a vat of beer and really didn’t resurface for quite awhile. He struggles daily to not drink. And let me just say, some days are easier than others, boy howdy.
Before we started dating, I was pretty straight forward. I won’t marry a drunk. I’m a daughter of a drunk, and I won’t live like that. I refuse. I still, slowly, started dating him.
When she got information that we were dating, let me just say, the proverbial shit hit the fan. It went everywhere. She said she was going to move and he’d never see his kid again, she was going to get his rights taken away, and she thought about how to get us to break up. Just for the sheer enjoyment of it, I guess. This woman had put this man onto the streets because of the amount of child support he had to pay. Imagine. Imagine having to live in a camper with no running water and no electricity, just to pay child support.
Right now, I can’t tell you the story about WHY he quit drinking. Not yet that is. I’m sure one day I will be able to, without crying and feeling anger and well, wanting to puke. But let me just say it wasn’t pretty.
Fast forward about six months.
7am: there’s a knock at the door.
In my sleepy haze, I stumbled from our tiny room to the front door, hair stuck straight up, and climbed on the chair so that I could see out the front window. Blue car. Crap, its her car.
THIS EARLY?? Ugh. *heart thumping in throat* For half a second, I considered turning around and going back to bed. Letting him deal with it. But nope, I swung open the door and woah, who is this man?
He asked for my husband. More drama.
This is where we learned that his ex-wife had DIED.
She FREAKING DIED. This …this woman who made our lives a living hell, went and DIED ON ME. What the hell?
This “woman” who had put us through so much had just DIED in her freaking SLEEP. I never got to vent my anger at her. She used to hold his child -my stepdaughter- hostage for months. At that point, we hadn’t seen our daughter in nearly six months. SIX FREAKING MONTHS, man. I never got to go to her apartment and beat the ever living snot out of her like I wanted to. I never even EMAILED her to try and get any sort of explanation out of her. I was trying to keep the peace. I just pretended like she didn’t even exist.
So, now I ask you, what do I do with my ANGER?
There are days I just want to scream. ALL. DAY. LONG. There are days when I want to ignore everyone. How do I make that stop? How do I get past this?
How?
by Band Back Together | Oct 8, 2010 | Chiari Malformation |
Affecting more than 1 in one thousand people, Chiari Malformation is a disorder of the brain.
This is her experience:
If you saw me walking down the street, you would never know that there was anything wrong with me.
If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.
If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.
If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.
If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bed-rest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.
If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.
If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.
If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.
If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides.
A girl who would give the world to be what you think she is.
