The question I’m not supposed to ask is ‘why?’
When the RN from VIHA came Dec 22nd, she didn’t put on the patches, in fact she put two of them on backwards and was working to fix it when she decided that ‘You’re just not worth it.’ It was past her ‘clocking out’ time and so she walked off, with cover stickers and Fentenyl open on my back, top off. She left trash and covers, including some with Fentenyl gel (which is lethal to children) not just in the apartment hallway but in the hallway of the building. She just didn’t care. Linda was notified when she returned that the RN felt ‘threatened’ though she said there was no verbal or physical threat to her, nor was she touched. But VIHA pulled ALL care pending a meeting I may or may not ‘be allowed’ to attend, and when everyone was ‘back from vacation’.
I wasn’t on Xmas vacation. When my case worker returned, she did understand the fuss. The meeting was to occur in January. It is mid was through February and there is no care, no number to call, no back up. There are complaints on the RN who is complaining….but nothing occurs.
Probably that is why I lost two days this week.
If it was painless, if it didn’t make me grip the armrests so hard I worry they will break off, or every day find me tilted forward, curling in, and without the muscles needed to sit up, to lay my head on the headrest. If it WAS painless, I could exist like this. Maybe it would be enough.
Tonight I have to decide to either do nothing, and finally get rest, spend some time with Linda or Cheryl. Or I have to decide to do something so painful that I live out scenerios in order to get through it. I have to climb a cliff or die, I have to get up the hill to where hostages are held. Whatever it takes that day, and then I just try not to kill myself the following days. There is no plan to deal with the pain after, just that what I need to go another two weeks is done and if I go insane for a day or two from pain in order to do it, then so be it right. It is like going to a torturer, or a dentist who is going to drill your wisdom teeth. And every week you have to choose to go there, to experience it. And even if the pain doesn’t show physically, it scars you, more so because it is a choice.
But why? Why is it ALWAYS that choice? Why do I see people in the hundreds who get to choose the easy way, the way of escape, the path of avoidance? Why do cowards prosper and when God when will you keep your promises to me?
I used to have a family, friends, kindred spirits, associates.
None of the workers, the health people, the doctors know how to deal with the disease. The same frustrations I have they experience but instead of making choices, or helping, they choose to avoid, to dump it on someone else, or just opt out.
Why is it always the HARDER choice? In all things, from University of Victoria trying to fail my practicum because I kept the Passover, to having my mother throw me out as a teen because I would not stop in my saving money to move out. I watched my parents turn on and off being parents for my entire life, depending on how they felt, if they had a headache, or how perfectly I could guess their expectatations.
Murray and Pat McClung choose to move away, to have no functional contact, no phone number, and no initiated contact in over three years. Why? I don’t know, but I do know it was easier for them. I know that I never stopped trying to help them because I love them. And I know that my family mocks me because they tell me that loving is a weakness.
My brother, Peter R. McClung, that's Peter Richard McClung of Blue Bell, PA, who works at Aetna and I have had a rocky road. First it was coming out, which was hard for him and with our Evangelical Church. Some comments he made ended up with Linda being attacked verbally by a 'gathering' and left sobbing in a parking lot. Then with the experiences when I was younger brought up, in an attempt to resolve and move on, his response eventually moved into a sort 'chit chat' relationship with the Elephant unspoken in the room, but not wanting to see me. And as I grew more ill, he made it clear that we would not meet, and I could expect no assistance from him. He did, randomly, and once or twice, assist, but with the assurance that this would not happen again. As I was out of medication, we had no food, there wasn't enough for rent, our electricity had been cut off, we simply were grateful for his philanthropy. However, his sharing of how taking care of a family at the church he served as Assoc. or Assistant Pastor to made Linda and I feel that perhaps we simply weren't a good advertising return on investment (you know: good advertising is better than blood). And we are perhaps both messed up in a household where dominance and pecking order was the most important. Did he use his strength to do what he wanted to me, what pleased and satisfied him at times, even when I asked and begged no? Yes. Until I convinced him that tonight, and proved I would call for our Father. A Father who oft used his hands for ‘serious’ things, like not smiling with enough sincerity, or eating before being allowed to.
It has, I think bonded them. My father said that my saying my brother used my body to have sex (or as the therapist said, used violence to have control) makes Murray, my father look badly. It says he didn’t have complete control of his family. So he goes on vacations and cruises with my brother. Why? Because it is the HARDER path?
Do I lie there when paralyzed and think about them, or the best friends who won’t even kiss someone not in the cult, now some sort of apocalyptic evangelism. Or the friends who died, or those who just won’t get it or allow me to be ill. Linda, where do you go in your head? I want to know about you but you only tell me about Val or this or that person. I am still in love with YOU, not them, want to be with YOU. But you don’t even remember Monday as the day I went without any pain medication, and was de-toxing, but as the day that I didn’t go out taking photos with you. I wanted to, really badly. But I was shaking, and so close to vomiting, that I was barely keeping all the pieces of me from flying off. I was SICK. I don’t fail you because for 15 years I could go without sleep or food and do what ever you wanted me to do when-ever that was. I still want that but I am SICK. I can’t control my limbs, I can’t control my heart, my lungs, my kidneys, my liver.
They say that if you are content where you are, then you are happy.
I may have always pushed myself harder, may have never had peace. But I think I could now.
I’ve been sitting here, in INDY, or lying in the hospital bed waiting for you. You said that when I got too sick you would read to me the way I used to read a book to you when you were down. I could be happy, I could have peace, but after a year of never speaking to me, I don’t know you, I don’t understand your moods, your anger which I see every day, which is directed at me every day. How am I failing you to that level of anger?
And through it all, week after week, month after month, I have to choose the hard way, which I do alone, sometimes there is someone there but often no. I push to go, I push to exercise, to deal with intestines, with my heart, my lungs, with my pain. I clean up and deal with the shakes and the hallucinations, with the deep dark depression due to my anti-depressants stopping, but I keep on. I’ve waited for you Linda, and for changing patches every 2 days, every 48 hours, I have had 3 patches in 9 days. I’m so tired that I have to remember how many hours til the patches are changed, how many days since taking a dump, how many hours since eating, how many hours since this pill, since that pill and I don’t know what day it is. And it is all on the white board going into the study but no one reads it.
So I am alone, week after week, alone. Sometimes people come in and go but they don’t talk to me. Alone, making decisions I don’t want to make, reminding someone whose reacts and is angry.
This sucks, all of it. The worst is when I have to pee, and I know that no one will ever help me, even to just lean on, that I must always make it myself, whether I fall, whether I don’t, whether I walk into doors or walls, I am on my own, no matter how many people are here. VIHA won’t help with a catheter, no one will help with anything. I really could have used an IV those two days this week, but VIHA doesn’t do live preserving measures. Nor does my doctor. I wish in some ways that they were on a ledge in a mountain and asking me to throw them a line so they can climb up. That’s all I’m asking for, a chance for day to day which isn’t hell. Would they want me to look down and say, ‘I don’t believe in any life preserving measures’ then? Why are they allowed to deem me disposable, but worse, to not even assist in maintaining the life I have? We aren’t allowed to drive like that, or walk through a hospital turning off machines. We aren’t allowed to play God, so who gave them the power of the Devil, to allow suffering?
Why? Why does it have to be this way? Where is MY advocate? Where in all those jobs, in all those wards, in all those doctors is any caring? Any passion?
13 hours ago