There was an episode of HOUSE a while back in which he makes some comment about how pain makes you make bad choices and that fear of pain was worse than that. I nodded my head knowingly at the time, but I’m really beginning to understand this more than I would like. Pain doesn’t really seem to stop me. It’s the fear of pain that holds me back. When I’m sitting in my recliner, tapping away on the laptop, and I’m not really hurting, going along okay, and then I think about getting up or doing something, I know that doing it is going to hurt. Why? Because it always does hurt, always. Always.
I mean, I cannot stand up with out pain. Sometimes it’s mild pain but sometimes it’s excruciating. I never know for sure until I standup which it will be. Sometimes, moving around is okay and sometimes it’s horrendous. Again, never know until I do it. So there are days I sit in my chair and spend more time debating with myself than I do actually doing anything. I’ll need to pee, but I know getting up is going to hurt, so I sit in my chair for as long as I can, until my eyeballs are floating, hoping the urge will go away, but since take Lasix (a diuretic – you know, a water pill), I know it won’t go away, and in fact, I know it will just get worse, and the longer I wait, the worse it will get, so (taking a deep breath)… yeah.
It’s the same for food, water, drinks and other things I need, including my medicine. If I lived alone, I don’t know which would kill me first: dying of thirst, starving to death, or dying because I never take my medicine. If I lived alone, they’d probably find me in a pool of my own piss, emaciated, and probably dead. And knowing my kids, it would take days before anyone found me. Again, knowing my kids, they might leave me there. They aren’t very good at cleaning things up.
Now… now that I’ve painted such a lovely bleak picture, you should know, I’m really not a pessimistic person. In fact, there was a time in my life I was an irritatingly optimistic and happy person. Here recently, especially the last couple of weeks, I’ve been really down. Down really, really low. Depressed, maybe, but not the way I’ve been depressed before. I’ve been crying a lot. Maybe in part grieving all I’ve lost but in part I’m being super emotional and I’m not sure why.
I fell last week. I still have bruises from that. I was wet, naked and in pain, lying on the bathroom floor. I had to cover myself with towels so someone could help me. My daughter put my head in her lap and stroked my hair while we waited for them to get to me. I cried. I felt helpless and useless.
I was alone most of the day yesterday, for about twelve hours, with no car, no money and the only food was food that had to be prepared. I got a first-hand look at what my life would be like if I were alone. I felt helpless and useless.
I am in so much pain and it’s getting worse and they can’t tell me why I’m hurting, which means they can’t fix it. And I’m dependent upon other people for keeping me alive. I hate that, both for myself and for them.
When I start feeling whiny and pessimistic like this, I talk to people about it and they assure me I’m not a burden, not dead-weight. I cook sometimes. I clean sometimes. I get the kids to clean when I don’t do it myself. I write things, and I bring in some money. So it’s not like I’m a completely leech on my family here. It’s just… I’m not me, and that makes me feel helpless.
It’s pride. It’s ego. It’s vanity. I was a single mom, raising two kids, holding down a job, saving money to buy a house, fighting to even get child support much less any help from absent fathers who were truly useless. I was strong. I was proud. I fought and I won and I succeeded. I was a criminal justice advocate. I fought for other people who couldn’t fight for themselves. And now, I can’t even get out of bed without help.
How did this happen? Why did this happen?
That is the journey I am on. I am so angry most of the time and so sad the rest of the time. I feel all the joy has been stolen from me.
I have my family, and I love them so much. I don’t know where I would be without them. My best friend, Lynn, she’s the most amazing person I’ve ever known. I don’t know what I did to deserve a friend like her. Growing up and well into my adult life I never had that good female friend but always kind of wished I had one. She’s more than made up for spending most of my life without one. I won’t trade her for anything. Ryan challenges me still, keeps my mind sharp, keeps me passionate about the things I believe in. He does that, and I think he probably doesn’t even realize he does it still. Maybe that’s why he’s so good at it. My son… well, I can’t say enough about him right now. That poor kid deserve a freaking metal for how amazing he is to and with me. He helps me with so much, from being my ‘sous chef’ when we cook together, which I love doing, to helping out around the house and helping with the animals. He’s grown up so much the past couple of years and I’m so proud of him.
And my animals. God, I love my Jakey. He’s like a little human being, like a little toddler, but I can leave him home alone if I need to…lol Wish you could do that with kids! (nah!) He’s so sweet. He’s learned to be gentle with me. When we play, you can tell he isn’t as aggressive with me as he is everyone else. It’s like he knows and remembers to be ‘be gentle with mama’, like he’s been told. He will kiss my face in the mornings, wake me up all sweet. He’ll lick my toes at night. He looks at me with those sweet puppy eyes. I love my doggie so much. The kitty girls are sweet too and I love cuddling with them.
I guess I’m saying there are good things in my life. Great things, really, awesome things.
And I feel so guilty that I can’t find my gratitude inside of me like I once did. I know, cognitively, I’ve got these amazing wonderful people and things in my life, and all I can find to focus on is the negative things, how much I’ve lost. How scared I am that I’m going to lose more. The worrying about ‘what if’ – what if I can’t ever feel good enough to write like I want to write. What if I can’t travel like I planned to travel. What if I am not able to leave the house anymore, because it’s too hard, too much trouble to pack up the wheelchair, the oxygen, and deal with the pain.
What if I don’t survive this… what if I don’t?
And that’s the one that’s scariest of all. Makes me think of this song, “No, I ain’t afraid of dying… it’s the thought of being dead…” Yep, I get that one.
Some nights, I won’t go to sleep, because I’m afraid I won’t wake up. Some days I should probably go into the ER or the clinic, but I’m afraid that if I do, they’ll find something else wrong. I’m convinced if I don’t go in, then they can’t find it and it’s not real.
I know they say that if you live in the here and now, that fear, pain and doubt can’t exist in the now. And that’s true. So I sit here right now and in the ‘now’, if I don’t move, don’t breathe, don’t blink, don’t think… there is no pain and no fear. But you can’t live your life doing nothing and expect to keep living. So… I fear the pain, because I know I have to keep moving. I fear the pain, because I know it’s going to hurt.
I just don’t understand WHY it has to hurt… I just don’t think it’s fair that it hurts.
Fear of pain makes you make bad choices.
Love and stuff,