Friday, April 18, 2014

On Family and Other Stuff

In thinking about my situation and my family I have been trying to figure out what I can say about them. I don't really talk much about them, and I am sure for anyone who might be paying attention, they likely wonder where they are.

I don't really know how to talk about them without talking about them, and odds are whatever I might say could get me into trouble. There was one time I said something and I got a phone call blasting me for what I wrote.

For someone who tries to be so open about everything, it is quite a paradox - especially when I know that many people are sitting back arm chair quarterbacking what I am saying and doing and how my life looks.

Is it that my family has terrible people? Or is it that I am a terrible person that no one wants to help me? Something is not right, of course, because if it was, why would I need the help of strangers?

One thing I will say is that every family has "ONE." One odd ball. One person that just doesn't fit. One that can never seem to say or do anything right in the eyes of others. One who is always judged and misjudged and misunderstood. Well. Guess who that is in my family?

Another thing I will say is that I do not think I have a bad family. I am sure they do love me. But, if you have lived life for any length of time you know that just because you are loved does not mean anything. And sometimes it means things that aren't exactly helpful.

The fact is I am trying my best to stay away from them, and it is not because of who they are or how they are, but more because of what they symbolize. In my head I hear the voices. The judgment, all knowing voices. "Well, if she needs help, she should get over it."

How would you feel if you had to give up your sense of independence? How would you feel if others got to make choices for you because you had no means to make them for yourself? How would you feel having the inability to express your life any other way than someone else might like or dictate, or have to deal with the repercussions of doing it your way?

Odds are you'd want to stay away as long as you could, too.

A friend of mine took care of his dad when he was dealing with a bunch of issues. His dad could no longer drive, and was at the mercy of my friend when it came to what he ate. My friend had his dad in mind when he did what he did, but he also had himself in mind. Any time his dad could have some repercussions due to what he ate, guess who had to deal with it? Eventually his dad went to live in an Assisted Living situation. Was it better for him? Who knows, really? But he no longer had to fight with his son to eat what he wanted to eat. Although he probably still had difficulty getting what he wanted, given the limitations of his health and activity.

My family doesn't pay attention to food in the same way I do. I would prefer to eat organic whenever possible. I could see them telling me something was organic, when it really wasn't. The logic being cost, and the idea that what would it matter any way? I think they probably judge me (although this is more speculation than anything else) for spending the extra money on organic.

The other day I was actually thinking about this particular piece of my puzzle. I cannot tell you how many people's first question to me when finding out about cancer ask me how I am eating, if I am eating organically/healthily. Many believe that to be important.

Well. That is all well and good. But the thing is, eating better also means spending more money, and when I am running out of money, then what am I supposed to do? I am supposed to somehow take care of myself with magical money? I am also supposed to do supplements and seek alternative treatments, and all kinds of other things. But with what? How?

My situation has an endless amount of frustrations and things that are difficult to explain in totality. The thing that sucks more is that I feel a need to try to explain every damn detail of my life. Many times there are pieces in which I even start becoming defensive, and people wonder why.

I try to anticipate all that I can about what I will be facing so that I can address it in some way that might have a person able to see my situation somewhere near close to my perspective, or at least not through the tinted, thick lens of their own. I imagine there are times I fail miserably. There are other times I probably piss people off. There are yet other times I might even make things worse.

There seems to be no easy or blanket answer to my situation, and yet many think that there is, or should be. It is the way people seem to view many aspects to life, and many people in relation to their lives and dilemmas. The fact is that it sucks in a big way, especially when another human being is struggling. The fact that they're struggling means that they haven't given up, and yet there will be those who will determine that the fact that they're struggling means that there is something deficient or wrong with them.

There are countless stories of people who went from 60 to 0, and never by choice. It happens. Life happens. And there are times that it sucks for a person to be in whatever circumstances they're in, whether you or I understand it, or not. If we had to depend on others to understand our circumstances to help, we'd be in big trouble.

People give to those who suffer in earthquakes and hurricanes who have never had that misfortune themselves. People do have the ability to be empathic, and to understand the core of another's suffering and dilemmas. The fact is is that I think many times it is easier not to, or people just don't want to.

I am not sure it's malicious. I just think it can be scary. I also think that because we have a tendency to compare, people make comparisons and think that somehow they know what another person is dealing with, when in fact they don't.

I have had people tell me they understand that I am having trouble making money and selling things. Many of these people have others in their lives (like a husband who is working) who can take care of things when they can't. The thing is their situation may require more money which creates an urgency for them, but it does not equate to my situation.


Am I yelling? The caps would seem to say so, and I am sorry if it seems that way. I just don't know how to convey to people the urgency of my solo situation. Imagine that you had no one who could step in and pay your bills, and you were doing everything you could to do that for yourself, but were getting essentially no where. How would you feel?

I guarantee you it would suck.

I am grateful to be living with a friend, so at least the part of life that means having a place to not only lay my head but truly function is taken care of. It's important, but it is not everything. He is also truly just a friend, so I can not depend on him for anything else. He knows my situation, and has not offered. His hospitality, though, is no small thing.

I am sure people somehow assume that the situation is something it is not.

Man. I did not expect to go down this road again. But I did. I rarely know what I am going to write about until it comes pouring out. There are times I am less than thrilled to revisit these tracks. But the thing is the last time I asked for help when I put my recipe book out, I got about $300.

$300 is wonderful. But it stopped as quickly as it started. And I am back to where I was. The $300 is all but spent. I am on the edge of my seat regarding Disability. I was told I should hear something by the end of this month, but the "something" could be a denial of some sort. Of course I am hopeful for the best possible outcome. As I am typing, I am waiting for them to call me back. I want to see if there has been any determination. Even in the best case scenario, I think it can take 4-6 weeks for me to see any money.

I think it is disgusting that they treat people dealing with cancer this way. I bet there are way too many people who never see a dime of Disability because everything takes so freaking damn long to process. It really makes me sad, not only for me, but for those who have to deal with it, too. You know their tune would change if they ever found themselves in need the way many are when dealing with cancer.

It is stuff like this that makes life harder to deal with. The illness is bad enough. But it is the stuff of life and of people and relationships that really sucks.

Yesterday I saw a posting by a woman who recently passed away. She had been dealing with cancer, and was sadly at the end. Apparently people must have been telling her about the miracle cure of marijuana because she made some comment about needing love and compassion and companionship then more than she needed it.

I wonder how many people understood that statement.

For someone who deals with cancer any length of time, you can likely place a bet that the person is aware of most anything you will suggest. They will be aware of the supplements, the alternative treatments, the complementary treatments, the healing practices. If you suggest it, there have likely been many others who have, or will, too.

In semi frustration I said yesterday that I was physically and fiscally doing everything I could to help myself. In both ways I am significantly challenged, and I don't think people really understand how stressful it can be to either not be able to pursue something, or perhaps have even pursued it spending money they didn't have only to not seemingly have had good effect.

There also becomes the challenge of acknowledgment. If I don't acknowledge what people say, there is a risk they think I do not appreciate what they offer, or potentially am ignoring them. Neither of which would be the case. Responding, however, takes energy and time - 2 things I
limited access to, as it is.

What would be of help more than anything else right now would be the financial ability to pursue these things. I am not without ideas or options. I am, however, without an ability to act upon them.

In addition, I am likely to be one of the most open-minded people you will ever know. I am not known to be "weird" for no reason. What many people do not realize is that I have done healing work for others. I am a hypnotist. I have a familiarity with many practices. For as much as people have suggested, it is very rare that anything is outside of what has already been introduced to me in some form or fashion.

I realize if someone wants to help, they may have no way of knowing this, and it is all too easy to assume that the reason I still need help and healing is because I have yet to find the ONE thing that will have that magical impact. At the same time, can you imagine how that must feel for someone? You have reached into as many places and things as you can, and still come up what some might say is empty?

I don't know if I want to say empty because maybe things are just as they're supposed to be on some level. Maybe things are just exactly how they need to be in my experience. But it still sucks when so many seemingly different things are just different versions of the same types of other things and it feels like you are still left wanting and needing the ONE thing that will be magical.

What if that ONE magical thing has nothing to do with anything or anyone outside of myself? What if I am the person or thing I am hoping for? What if my life has been bringing me to this point by all of the things that I have been exposed and open to?

I have a habit of not wanting to listen to others, any way. I took my trip last fall (27 days/over 5000 miles) despite the fact that very few thought it was a good idea. The most "important" people, the doctors, certainly didn't think it was one. If it had been up to them, I would have been on chemo again since last September.

What an ucky thought.


It is now a day later. After writing the above, Disability called me back. Not happy news.

I wrote this on Facebook after the call:

Sooooooooooooooooooo PISSED. I called social security more than once since I physically dropped off the paperwork in January that they needed to address their denial. I was told it was received and in process. I was told I had to wait several weeks. Then I was told the first estimate was a minimum. Something told me to call them today. I was told today that my record does NOT show the paperwork, and that info has been sent to the local office regarding follow up. They can not tell me a damn thing about what that means. About timeframe. About NOTHING. In addition, I was told that if I did not get the paperwork in by the end of January I would have to start the damn process all over again. I cannot tell you how freaking angry I am right now. I need that money! I need help, desperately. I have been trying to be calm. I have been thinking I will have answers and money soon. They should be so damn ashamed of themselves treating people this way - anyone, much less people who are dealing with illnesses that can take away their life long before they ever do what the freak they are supposed to do to help them!!!!!!!!!!!!!!!!!!! If anyone knows what the hell I can do please let me know. It looks like I am going to have to call them every freaking damn day, maybe even a couple of times since I seem to keep getting conflicting information. The woman on the phone got an attitude with me when I got upset. Instead of understanding, instead of trying to do anything to help beyond the formal "sent a letter to the local office," instead of proactively trying to do something about something that apparently has happened to other people at other times, instead of being empathic and trying to understand why the hell I would be so damn upset, she got an attitude. I even apologized to her if if seemed I was pissed at her, because I wasn't. I am pissed at an ineffective system that seems to screw those who are already greatly screwed. Maybe if the "systems" could realize that there are people who are hurting they would give a damn to do more to help them instead of getting defensive about their crappy way of dealing with things. How would they like to be me sitting on the edge of my fiscal cliff with no help in sight? I have tried to do everything right. I have tried to do what they asked. I even called more than once to follow up, and was given the wrong information! And I am sitting here, a year later, empty handed. This is not right, and there should be some damn recourse for situations like this beyond a damn shrug of the shoulders. I had thought about asking for a supervisor, but was so angry when I hung up, I forgot. Tomorrow I am going to try the local office. I hope they're open. I don't want to have to physically go in there. It is a big waste of time. But if I have to, I will. This is disgusting. I am so disgusted.

The day just went south from there. I will write a different blog entry on what the rest of the day was like. This one is already long enough.

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