Friday, February 10, 2012

The Question of Why?

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?


Anonymous said...

I love you and I care for you.. love and loving in whatever capacity youre capable are the important things. I grieve its all such a struggle for you atm.
you have my love my support my prayers and whatever meagre encouragement this post will offer

Lorna, Bob and Liam said...

We hear your pain and suffering.

We hear your loneliness, frustration, despair.

We also hear your incredible will, your courage, your love for others and for living.

We love you and bear witness and hold you in our thoughts and hearts.

We wish we could do more, and wish for a more compassionate and just world for you.

Fight what you can, accept what you must, know you are loved.

Lorna, Bob and Liam

Elizabeth McClung said...

I appreciate that. Thank you.

I still cannot, every day, understand parents and an only sibling who would, for the past 1,000 days pretend I am already dead, pretend I don't exist than pick up the phone, or email, or visit. Who doesn't at the end want to know that family is there? That someone is really there, on the other end of the phone, on the other end of the hand.

No one can endure torture forever. Eventually everyone breaks. One day I will break, and then it won't be long before there is rapid and even more difficult degeneration, organ failure, gangrene, and the only way to get treatment is in a hospital that is 99 degrees when I am 96 degrees and I cannot sweat. Try walking down the street without sweating and you start to feal nausea and eventually get heat exhausion. Try to sleep or survive in a state of overheating and as your body dumps all the water from all your cells as a last ditch effort, and you swell and swell, and your watch breaks through the strap, and your organs cook, and your blood is toxic, and it starts to burn your brain tissue, before you start, due to the high blood pressure, from your body wanting more and more to sweat, but unable to, you have bleeds internally and externally all over your body, and you start to bleed in your brain, which is cooking like in a pot on the stove. IT takes a couple days, and though most of your body dies, the 'you' which experiences it all dies almost last.

What, compared to the present and future, is so hard or horrid that my birth parents will not call, or write, so at the end, no birthdays, Xmas, or other times of celebration to offset the couple hundred really bad days this last year.

I don't think anyone deserves to go like that. But I am.

JaneB said...

Oh my dear, my dear friend, I don't know what to say, but I care and I will continue to care, to stand amazed at your endurance and courage and beauty, to wish i could help more, do more, be more.

Your parents are blind to what they have, and it's a tragedy.

Many good thoughts and prayers

Anonymous said...

please hang in there! even in the most horrible situation there will be some form of peace... I hope

Baba Yaga said...

Oh, Beth. What provokes such anger at the helpless? (Not that I generally put you in the 'helpless' category, but for this it seems to fit.) Is it anger, or merely the corrupting effect of power? Is there any way to tell?

I know that it's not particular to you, or any other victim of it, that it's not 'deserved' by anyone, or escaped by anyone merely because he deserves better. You fight so hard, you strive so hard for the right thing, and it's no protection.

I keep thinking there should be a way for me to advocate for you. For the blog readers en masse to do so, to be the sort of nuisance which creates a grudging little adjustment. (Not enough, ever, but even grudging adjustments add up.) I never get to the details of that, though. Never well learned how to do it for self - it's fairly easy with the reasonable, but otherwise, what? VIHA hardly seems reasonable.

I'm sorry. If I were closer, I could visit, and I'm sure apply patches! And companionship, which sounds so painfully lacking.

I'm sorry I can't *help*. If listening helps, though, I'm listening.

Raccoon said...

I'm not going to comment on the medical establishment where you are. I've already done that a couple of times…

You do have family. Maybe not a birth family worth speaking about, but a family all the same. Lorna, Bob, Liam, Neil, Cheryl, some of Linda's family, Baba Yaga, Tina, and a lot of other people whose names I can't immediately remember.


One time, around 2000, I was talking to my brother over the phone. He was telling me how much he admired me for my choices in schooling, in work, in life. He thought they were hard choices for me to make. On my part, the choices that he made were directions that I wouldn't be able to.

And we both thought that the choices we made for ourselves were easy, were the paths of least resistance.

I'm not saying that you, or anyone else, have necessarily followed that well trod path. And I'm not saying that anyone has intentionally begun the difficult route, either.

So, temporarily ignoring everyone else, I think the question that you need to pose is: "Why DID I choose the difficult path?"

Tina Russell said...

Oh, my God... I mean, I already knew that your family was and still is horrible to you, I just didn’t know the extent could continue to shock me, over and over. I mean, knowing that your son is sexually abusing your daughter and first thinking about how it might affect your reputation rather than thinking, you know, “this has to stop right now and never happen again”... blegghhh!! That’s so low, it makes my brain rattle about in my head.

(hugs) I’m sorry so many people treat you like shit. That sounds like the worst ever, to be struggling every day to live the best you possibly can and have people always pulling the rug out from under you, adding insult to injury.

I know something nerdy that might help a little, maybe. So, in the Spider-Man comics, J. Jonah Jameson is the conservative newspaperman who’s devoted his life to stamping out Spidey through smear campaigns and nasty editorials claiming he’s a dangerous vigilante and a menace. In issue #10 way back in the sixties, though, he admits to himself why he feels such deep hatred for the wall-crawler:

I wonder if its similar with the people at your home. You have so little body function and yet you push every day to make every bit of it count, to live your life the best you can and be kind and compassionate to others. They have full body function and longer lives to look forward to, and can barely stand to give the most basic compassion nominally required by their job (and generally they can’t even be bothered to do that). They must hate to see how much you can do with so little, and feel ashamed for having so much more and just being so petty and horrible with it, so they lash out at you even more. I don’t know, that’s just my dramatic hypothesis, but I hope it helps you feel superior to them in every way because you are.

Hugs and love, Beth!

Anonymous said...

I don't think anyone realizes what Linda has to go through on a daily basis. Not that I'm taking her side, but seriously, does anyone look at it from her side? Maybe Cheryl should take over the caretaking, or better yet, maybe a nursing home could do a better job. I'm sure Linda is beyond stressed.

Elizabeth McClung said...

Raccoon: It is an interesting question. I would say the 'why' is that I choose to do things which were 'open' in name but not always in social convention. For example, I was told by the Teachers Union that British Columbia discriminated against all other religious days because 'All teachers should be Christian and if you don't like that, stop being a teacher' (well, when you are 4 years of university into a qualification it seems that is more of a 'how it is' than what was printed in the prospectus). The same with bosses who threw things, or skived off, or who brought 13 year olds behind to the back room to give them blow jobs. Do I obey the law, do I do my job to the fullest, even when others are not.

In the end it comes down to not that complicated values: if you make an agreement follow it through, If someone gives their word, count on them to uphold it (same if they say all are equal).

My brother always told me to 'sell out' - but I don't know how to 'sell out' - how do I start? Do I torture and then kill animals like he did? Do I lie and deliberately hurt others in order to make sure the people in charge like me? Do I tell someone I will help them on the job, then deliberately not in order to make them look bad? I don't know what 'selling out' is - is it stealing the family car without regard for what others may need? Does it all just base on selfishness?

Sure, I am having a bit of a pity party but also, why, why, why does it seem hard. Why do I hear from others of people with ALS and degenerative diseases getting the same treatment, why did everyone at Linda's job end up quitting after the boss would drive them to tears from his abuse? Unless there is no accountability at all, it can't be simply the 'choices' one person makes in a society. Some things are wrong and allowing underage sex in my employers back room in order so that a manager will like me seems more than just 'my' choices. Same for the problems in Wales and here due to being 'out' - coming 'out' was a choice, and maybe one I would say 'wasn't worth it', but once you are out, well, it is hard to put it back in the bottle. The same with all the social stigma's. I do though question choices I have made, in order to find a way to make better ones. But I do feel oddly at times that those I interact with in certain sectors don't seem to have that same onus.

Elizabeth McClung said...

Yes, Perhaps a nursing home would be a good option if one was available. Sadly it isn't. Getting VIHA RN's who come to the home would take off some of the pressure if that was an option, but it isn't as well. Getting the Emergency response team to come would help, but they don't.

Linda McClung said...

Why? is a qestion I often ask myself. Why is Beth sick? Why her and not someone else. Why is there not enough support? The How? question soon follows. How best do I care for Beth? How do I treat her symptoms? How do I get more assistance? Unfortunately I have more questions than answers.

Yes, you are sick, Beth, and it frustrates me when instead of acknowledging they don't have the answer, people deny your illness.

You do so many hard things - and going to the gym is definitely one of them. If I had to endure the pain you do, I think I would have given up long ago. As it is, I sometimes wonder if the exercise is actually improving your quality of life, considering how terrible you feel for the few days following it. Or maybe we could change your exercise regime to something that achieves the sweating and pushing of blood/edema from your fee without the same high degree of intensity.

It saddens me how little your family wants to be a part of your life. My colleagues who have never met you, never read your blog seem to care more about you than your family does.

I wish that I took better care of you. That I had an unlimited supply of patience, gentleness and love. That I wouldn't get frustrated by the vascular dimentia, that I have lots of energy which one gets with lots of uninterrupted sleep. But I give what I can, and keep giving each day.

I agree. It sucks! And I will do what I can to make it suck less. Like helping you to the bathroom and not assuming you can make it on your own. And making your sure patches get changed.

We aren’t allowed to play God, so who gave them the power of the Devil, to allow suffering? What a powerful question, which a great writer thinks to pose.