It is not ok.

It's not OKAY. Today I noticed a good part of my eyebrow is gone. I pulled out my bag of tricks to draw on eyebrows, but am missing a thing, or two. I was hoping not to have this issue. But it looks like I need to re-aquaint myself with how to draw them on. I always did it with other makeup, so it might not look quite right without. 

This is when things start to really suck. This is when Is need to be more self aware when going out, or even answering the door. I don't look the same without them, and couple that with the paleness that chemo offers, it really does suck. I got my fingers crossed that I have enough hair to not have a bald spot, because then I will reluctantly have to wear a wig, on top of everything else.

I hope I can get to a place to break before it gets too much worse. The physical part is harder than anyone likely thinks, given how people seem to react when I share how I feel.

The thing is: no matter how good anyone thinks I'm look, how I look is not something I chose.

There is a big difference between choosing to have short hair, and having it because of a treatment. A HUGE DIFFERENCE. There is nothing anyone can say or do to compensate for that fact, many times I think people try to mitigate things, probably to try to help me feel better, but I suspect it has something to do with how they feel, too. 

I don't want you to think It don't care about what people say, or don't appreciate it, but the fact is when I share, I share for perspective. I don't share to be fixed, or complimented. I imagine that in my sharing there may be some insight that will be helpful for someone who has someone dealing with cancer, or that someone else dealing with cancer might appreciate my words - especially if they align with their own.

And it doesn't matter what anyone says, this really sucks. No one is going to be able to say a dang thing to change my own personal experience of this aspect of treatment. It doesn't matter what does, or doesn't happen with others; this is about me.

Totally unrelated...

In follow up to the person I was in touch with regarding the radio show...it looks like it ain't gonna happen. It seems my gut feeling was more than likely correct. It seems that the conversation would need to be positive. I am not sure that it fits the message I am looking to convey. I am just not sure that it is "real." I wouldn't look to be negative, just realistic. 

We all have our moments all over the map, but we try so hard to push away the stuff we would rather not see. I really don't think it does any of us any favors by putting the spotlight on only the positive and the good. I think it just makes it harder for us to deal with the things that are in the shadows. 

This bit is frustrating for me. I don't seem to fit anywhere these days because I don't see things the same way as many do. Most of my life I have been different, but this is even different from that. This feels like it is about something larger than myself. I feel like this is something that chose me. I don't really feel like I have chosen it. 

It is so hard, and there is a part of me that wishes I could just shut up, just walk away from it. It is just so painful at times to keep coming up against the pre-existing ideas about things that really don't work.

But the problem is that most don't realize just much they don't work until they are challenged by something that was not previously an issue. At that time they can be unpleasantly surprised by how it is to be on the other side of things. They can also become a voice for something they once had no clue about, and perhaps even an air of indifference. Or maybe their relationship with that thing may have come from a place of fear, and the relationship shifted, once they have no choice but to be immersed in a situation that has them come face to face with that fear. It can, and often does, change every-freaking-thing.

But. For as much as we likely sense this on some level, we avoid it as much as possible. And how does one talk to people about the stuff they rather not talk about because they won't even acknowledge it? Some would say, "don't even try." There is a sense of being defeated by the history of human nature.

I think we have a bit too much of that. 

I also think others may agree, given some of the things that seem to be happening in the world. Some people are waking up, and asking the questions that those who are still sleeping would rather not hear. They are saying that "just because" is no longer acceptable. They are seeing the lunacy of some of the things we collectively seem to have agreed to, and it is not OK - no matter what anyone else says.

And, it occurs to me that this blog post has come full circle, as what I just wrote is how I started this entry. I may have been talking about my vanity in some way, but the essence is the same. Individually we will have to look at some things that are not pleasant, or pretty. Others may try to negate it, or dress it up, or minimize it, but it doesn't change what we perceive to be reality in that moment. And it is best for us to not negate, dress up, or minimize our own perspectives - which is often anything but easy.

We can try to explain to others how we feel, but some just won't get it, or want to get it. I guess we are not doing the explaining for them. Perhaps we do it to clarify things for ourselves. Or perhaps there are others who want to hear someone else say what they think or feel. Maybe it gives them permission to speak up, speak out - to be themselves.

So much of the way things work silences the voices and messages that don't fit. Reactions of others often can intimidate, or make a person feel any number of not so good things. We are really good at controlling each other that way, and even better still controlling in the name of "positivity" or being "helpful."

We've all likely done it at some point, or another, and have had things we have allowed to happen when having to deal with what others think and believe, and while it has such an incredible personal cost, we somehow think it good enough for us in some way to preserve the fabric of a situation that does not really work.

Breaking free from the things that stand between who we pretend to be and who we really are can be extraordinarily difficult. It can feel like tearing off a layer of skin, as the things we pretend to be can sometimes seem to be too much like who we are, and we can't always discern what is or isn't us, and even when we can know which is which, we go for the safer, known route - even when we know it does not really work. 

I am getting very sleepy. I can barely keep my eyes open. I am already suspecting Inam talking in circles, but am hoping I am wrong. Sheer exhaustion is having me post this, as is. If a I don't do it, I might just forget. I can always come back and edit/add, but it ain't likely. :p

So this will just be my brain dump for the night. Hopefully it has made some sort of sense...

Hoping for a Good Night's Sleep

It is late. I was tired hours ago. I really should try to sleep. Last night I had a hard time getting there, and staying there once I arrived.

I am feeling a lot of stress. I am overwhelmed by the things I need to do. Couple them with how chemo makes me feel, and it is considerably worse.

Interestingly, perhaps, I reached out to someone looking to talk to cancer "survivors." I had hesitated at first because it seemed she may only want those who were able to tell the story of surviving post cancer. But I decided to look up how the term is defined, and it is broader, as it can include people like myself. 

The person's first response to me was to ask if I was "cancer-free." I guess my first inclination was correct. At least it seems. So I explained to her what I just explained to you, and then said that I felt there was a story about LIVING and surviving with cancer to be told. But I also said that I understood if that wasn't a story she was looking to tell.

It will be interesting to see what her response is.

The whole thing got me thinking, as it seems I just don't fit a lot of places these days. Actually, I am not sure where I fit, at all. It is incredibly frustrating to not fit what people think they want and need. If it turns out she is not interested in my story, it may very well be because it hasn't had the "cancer free" happy ending. I think she wants to give hope to people "like me" by having the Happy Ending stories. But why just focus on the end? There is a lot that happens along the way.

But that is "just" me. I wouldn't take that approach, at least not to the exclusion of other things. But that doesn't mean others shouldn't. It frustratingly makes me want to do more within the context of my experience and perspective. Frustratingly - because I just can't. 

I just can't do more. As it is, I wonder if what I do is enough. I also wonder if it matters. I don't even do that much, but it takes precious time and energy. Today I was feeling kind of down as I shared the things I did. I am exhausted. Is there any point? Is there any escape?

Some people get really sensitive at the idea of someone like me taking a "vacation." Someone like me, being someone asking for financial help. The thing is, though, if anyone needs a vacation, it is me. I don't even remember the last one I took - even pre-cancer. Once cancer showed up, I got a 24/7 job dealing with cancer. It is around the clock, and there is just no getting away from it, and all of its tentacles. 

The couple of times I got away were the closest things I got to a vacation. But they were no vacation. My cross country trip I "worked." I did my radio show, and posted blogs, and pictures, and videos. The trip wasn't about me. I wanted to have a conversation that so often isn't had, or is had in the shadows. When I was with my friends I just pretty much lived my life there, as I would here; it was just with a change in environment and scenery. 

Both helped. 

But then I returned home, and returned to the realities of my life, and the around the clock stresses of managing all that I need to, and the hope that I am not missing anything important (which has happened more than once. Many times, in fact.). Managing the reality that my life is a mess. Managing the reality that a lot that needs to get done, isn't. Managing the reality that I am lucky if I have one good day a week. Managing the reality that I can't really be myself, and that much is lost in my chemo-tized state. Managing the reality that the docs would have this be my constant reality til the day I die. 

I really am feeling that I need a break. But I don't know what that means. I could try driving somewhere, but my car has issues. I don't have the money for other methods of transportation, nor for places to stay. I am feeling pretty much trapped. And it is getting to me.

I really feel like the creative in me can't just be creative any more. Creative for creativity's sake. Everything I do I am sharing, in the hope that something will be desired, a donation made, and I will have a little more money to work with. If I go somewhere I usually take cards of some type and/or my jewelry. I feel like I am often "on." And I so need an off. I haven't even tried to bake anything in a while. Been wanting to, but other things have been drawing my attention and energy. I can't even seem to shut down at night any more. I feel so wired. I am sure that isn't helping.

I do not have a "caregiver" to shoulder any of my load. It all falls on me, and I feel like I can barely do anything sometimes. Many times. I feel fortunate to get the things done that I do. If they seemed to tangibly help more, and more often, maybe it would feed me, but instead I find myself feeling depleted, and at times, nearly defeated.

I have all kinds of things I would like to do. I have all kinds of ideas. I just can only do wht I am doing, and am often told - in so many words - that it is not right, or enough, because, you know, it would be a lot better if only I...

What many do not seem to get is that I am feeling like I am drowning. Occasionally my head may seem to be above water, but that doesn't mean I am not drowning. I am still weighed down by all that I have "swallowed" as I dealt with the incoming waves. I can't do everything on my own, but for the most part, I seem to have no choice, but to. And, at times like that, everything is more like a thing here or there.

It really sucks.

I have said for a while that I am tired in more ways than one. There are, though, times like tonight it is much more painfully - and inescapably - evident. 

I wanted to try to sleep, but something was pushing me to write first. I have to hope tha something good will come from this purge - even if it is "just" an ability to get a decent night's sleep.

Feeling Heavy Hearted

Facebook inundated with Mother's Day. I have been on and off there today, and feel very heavy-hearted each time I go. Last time I was on there, I told myself to stay off. But, like so many things, I forgot. 

At first, everything I was seeing was HAPPY Mother's Day. Everything was happy, smiles, tributes to mothers...all good stuff. Was it all "real?" I wondered.

What about situations like mine? What about situations unlike mine, but similarly not particularly happy? 

Then I started seeing other posts about how this day might not be the happiest for some, for a myriad of reasons, a lost mother, a lost child, not the best relationships. I also saw the "Hallmark" backlash from those who aren't exactly appreciative of the fabricated holiday. (Did you know that the woman whose idea the day was came to believe that it was not a good idea - because of the fact that commercialism came to overtake it?)

As I write, I think about how those who are empathic, and feel what other people feel. I find myself wondering if the heavy heart I feel is in some part due to all of the maternal wounds there are that are being torn open today. I would think some of it is personal, but the weight is pretty intense; I Am thinking it can't possibly be all "mine." At least, I hope not. It would mean an immense amount of pain that I have not been conscious of.

As it is, I am dealing with a lot of mixed feelings and emotions about what is to come. The fact is that I do not really know what will be, but that uncertainty is unlike the uncertainty healthy people face. Some think it is the same, but it is not.

Most people live into a future that has possibility, and can get bigger and better somehow. That is how we are often trained as a child. We are taught to build, progress, to believe that things go mostly in one direction. Occasionally life throws curve balls, and there are setbacks. But we are also taught that setbacks are a step toward the future, too. It is like a hiccup. A blip.

Most who do not have to deal with something like cancer do not realize how difficult it is to be in a context that most would say goes only one direction, and it is not the one we are taught. But they still overlay the context they were taught in a situation like mine. People talk to me like my world is exactly like theirs, and that I can do whatever I want to do.

The fact is...I can't. I have so many considerations now for whatever I choose to do. And there are things that a healthy person wouldn't have to rule out. There are so many limitations, too, and they are not ones that I put there for the unconscious stumbling block fun of it. They are all too real, and I trip over them at times. It is difficult to have to "defend" them when a person I am talking to just doesn't get why I have the concerns I do.

There are times people's knowing almost comes across as flippant. I know it likely isn't, but it is still extraordinarily difficult to consider what a future looks like when It would seem - short of a miracle - or some incredibly creative solution - I will never live on my own again because I can't afford it. And then there is the issue of my health. If it deteriorates, then what? Not to mention, there is no clear cut path of where I would go, or what I would do.

It is enough of a heartache and concern that there are times I genuinely question continuing to live life. Is it worth it when there are so many parameters of life that do not take into consideration the exceptions?

The kicker is that I know that I am not the only one trying to deal with conventions that are not only one size fits all, but am the recipient of judgments and more because I don't fit. It's my fault, my problem if I don't fit, and if I try to fix it, I might run straight into the parameters of the things that can't possibly work for the exceptions.

I wonder how many people would maintain their beliefs about the circumstances others find themselves in if they were to arrive there themselves? It is so easy to say and believe things, and to be judgmental when not in the middle of it. I suspect many change their tune if suddenly facing something they thought they never would.

A part of me thinks I should stick around to continue to speak to this stuff. I also found myself wondering today if there would be a way to create a home for people like myself who don't have the means to be on their own. Getting an apartment/home at this point would be impossible, unless I suddenly had the cash outright to buy it. And I have no means to do that.

Imagine that you couldn't "just" do what you've always done. What in the world would you do?

I realized something else about my life recently. Because I haven't married, or had kids, so many of life's initiations haven't happened for me. It is like society is a big club that I have never been eligible to enter. I am not sure what I think of it, but there is something to that conversation. It is at least partly why I am now facing the life I am. 

And, quite frankly, a part of me could not be more frightened.

PS can you help me help myself? If you appreciate my work, it is easy...and only $1 per month can help, a lot. Seriously. Patreon.com/Jolope thanks.

What you think you know...

So many things are going through my head right now. It is like Rush Hour. There is chaos to the thoughts, too. It is as if there is no plan, rhyme, or reason to the flurry. I am fairly certain much of it is rooted in fear because it has to do with a yet unknown future that I can't possibly control, but desperately want to.

I have been feeling like I need to write, but I wasn't sure which thing I would write about.

I have thought on a few occasions about how some people think that someone they know is handling cancer so well. They have cited their person as an example of exemplary behavior as someone who was dealt the cancer card. Of course, that isn't exactly how it is discussed, but at the core there is something like that. 

On a few occasions, I have tried to gently raise the idea that maybe things were not as the person thought they were. More recently, though, I have come to an example in my own life that might be helpful as a reference.

The friend I live with does not know how bad I am sometimes - a lot of the time. At least he doesn't know directly from me. When I cry, it is often when he is not here, or it is late at night, and our doors are closed, and I try to be quiet. I do not tell him a lot of things for various reasons that I prefer not to discuss. However, in my mind, withholding how I really feel, and how I am doing, is what I should do in regard to him. And he is, without a doubt, one of the people who is closest to me.

If you were to ask him how I was, or how I was doing, he would more than likely have a much different version than the one that most see. He isn't on Facebook, and doesn't read my blog, so the only "weather" he is aware of is what he experiences with me, and/or what he might be aware of on a gut/intuitive level.

So...the next time someone you know is struggling, and seems to be so fine, you might want to consider they are not as fine as you think. I realize this kind of statement sucks - especially if you do not feel like you can do anything to change the situation, or help. But, here's the thing: if you really care about someone, your potential, willful blind eye only comforts you, while your friend/family member still hurts/suffers. You may think you can do nothing, but if you are willing to see things as they really are, perhaps you will be able to do something more than you think. 

If a person you care about is indeed holding back, it is possible that your willingness to be with things as they are might be a gift you could give that person. Giving them the freedom to be honest could be an incredible gift. I cannot tell you how many times I have heard someone talk about how difficult and exhausting it is to not be able to be themselves while dealing with cancer.

Quite frankly, it is difficult holding back around my friend. It is so much easier when I just let go. I just do it in other ways, with other people. Would I want to be open with him, if I could be? I am not sure, actually. But I wouldn't mind knowing that he'd be OK with it, if I wanted to be. The fact is, we've never spoken about it, and at this point, it is not about to come from me.

If you are willing to allow the other person to be frank with you, you might want to consider initiating the conversation. A person who is anything like me wouldn't likely want to rock any boats, if there were  reasons s/he felt the need not to be so open and honest about how they really felt.

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Everything is Relative

Earlier today I posted a different picture of me on Facebook. It was an image that didn't take much effort, in any way. There was no make-up, no wig, no "help," really. 

When I looked at it, I saw a pale me. I saw where my hair has thinned at the hairline. I noticed how much my eyebrows had thinned out. I tried to think good thoughts when I took it, but all I could do was smirk.

I know it is not terrible. But not terrible is not great, either. The difference between that picture, and the one on this blog post I think is significant. And, quite frankly, I am not sure of what I think of this one.

People have tried to tell me that they think all is fine. They tell me I still look good, nice, and so on. But the thing is, I don't see it for myself. I am not thrilled about wearing wigs these days, but I feel like they come closer to the me that I used to know. 

And I miss that person. I really do.

I realize that there are those who go through chemo, and have less, or no, hair. I have myself been one of them. Some might think I should be grateful for what I have because others have less. I am sorry, but I do not agree.

Many people will downplay whatever they are dealing with when they talk to me - because it's not cancer. I ask them to please not do that. Their reality is their reality, and whatever they are facing is real and legitimate for them. In the same way, what I face is real and legitimate for me.

I have been through so much at this point. May 14, 2012 was when I was told about "the" tumor. It is almost 3 years ago now. I am battle-fatigued in so many ways at this stage in the game. While some would want me to focus on the good, the positive, the things I do have, there is much that has changed not only considerably, but irrevocably, in that time.

There are parts of me that are still likely mourning. Every time I look in the mirror I see stuff I don't want to, and miss the things I'd like to see. There are some times I am better than others about how I process what has been, and what is. 

There are times I share my experience of being me because I feel like I "should." Some seem to think I look just fine for a person dealing with cancer. And that is supposed to be a good thing. But the fact that I can look "that" way to others (as in "fine") given what docs believe to be my prognosis could be misleading, to say the least.

I did not post the image to get all the great remarks I got. I posted it to share a reality for me. I posted it to show people what I am facing in the midst of facing it. The "only" problem is that it seems very few (if any?) see what I am facing the same way that I am. They obviously have a different perception of my reality.

How does one share a version of a reality in such a way that it will be received as expressed? That is probably The Milliion Dollar Question. How do we have others see us as we see ourselves? 

Some might argue that others sometimes see us better than we see ourselves, and that that is a good thing, and perhaps we should forego our perceptions for theirs. But I am not so convinced. I think we need to be wherever we are for as long as we are there. I think we need to acknowledge our moments - of all kinds.

I think that when others try to tell us things that don't fit our own personal version of reality, it isn't always going to be helpful - at least not when it practically demands that we deny ourselves in the process.

My reality is not going to change just because someone shares with me a different version than the one I am currently working with. There is no magical perspective. If there was, I would be able to show people the things I do about what I am dealing with, and they would be able to see it without wanting me to alter how I view things.

Most who want me to be different have not dealt with the many issues that I have faced. Hopefully they never will have to. But that doesn't stop them from thinking they can offer some helpful perspective. I am not sure their perspective would be the same, if they were to ever have a first-hand opportunity to be in a position like mine. But, even if cancer did show up for them, it would still be likely that they would never know just how I felt, since our experiences could still be very different.

For some, hair might never have been a big deal. As for me, it was always a part of who I was. It was a part of my identity. It was something people always commented on, always liked. For me, losing my hair was a huge deal. I was devastated. I am no longer devastated as I once was, but it does affect me in several ways. It is why I take the efforts I do to look as I do on occasion. I need that extra something - for me.

It is easy to make it seem like something should not be a big deal when it is not something you intimately have to deal with. But for the person in the deep end, it can be quite a different story. I think we could be a lot kinder to each other by allowing others to be wherever they are in any given moment in relation to their reality instead of trying to overlay their situations and emotions with our optimism, practicality, and positive attitude.

After all, when you are on the receiving side, it isn't always welcome...is it?

Having said that, I want to acknowledge, and appreciate all that was said. I know it comes from a good, supportive and loving place.

It just really is hard to just keep going in so many regards at times. I wish the good words and thoughts could make everything "all better," but the only thing that really comes close is my willingness to be wherever I am at the time I am there.

I realize it may not be as positive and wonderful as the words many say, but that really is Ok. Our human experience seems to be rigged this way, and there are times I learn a lot from where I am, and where I am not. I have learned a lot about myself, too. 

And you know what? I think a lot of it is pretty cool. I am not sure I could have learned what I have any other way.

I told a friend yesterday that he always asks my opinion, but then seems to do his own thing. I said I felt that he "uses" me to figure out what he likes/wants.

I do not think that is a "bad" thing. I think, in actuality, that might just be what a lot of us do. We learn a lot by how we bounce off, react, to others. 

I debated about how to write about the picture, and my response. I know there will be those who will not hear what I am saying. There will be those who will be uncomfortable, or take offense to my reaction.

This has been an on-going situation/conversation from pretty much the beginning. The whole "looks" thing is very much a thing.

But, like a lot of life, this is a thing that exists - even without cancer in the mix. If it wasn't a conversation before cancer, it would less likely be a conversation "during" cancer.

I have wanted to write about the whole physical thing, but have never been sure exactly what I wanted to say, or how to say it.

I still don't know what that piece is, but I feel like there is one.

It sure is interesting to see people's responses to the things I share, though. 

I am tired of being wrong

Well. So much for sleep.  There has been a lot of outside noise today; maybe I will blame the fact that I haven't slept on that. I am even more tired than I was before. But I pushed myself to go eat something. Since the doc said that iron might be a concern, I fixed an egg. Been kinda wanting eggs a lot more lately, maybe that is partly why. I often find there is something in my food cravings that make some sense when I think about what the foods offer. That is why I usually just go with it.

For some reason I have been thinking a lot today about a conversation I had with a friend a couple of days ago. He was trying to encourage me to "fix" certain relationships in my life. I entertained the conversation with him a bit, but then put my foot down, and said I no longer, ever wanted to talk about it in the way we were speaking of it again. I told him that even if I shared about something, it wasn't an invitation to have it fixed. It wasn't that I was even saying I wanted it fixed. If I shared, it was because I was just sharing what had occurred, period.

He thinks he is right in what he says. He is adamant. He has been like this, to some degree, since I have known him. Whenever I try to tell him how I feel, he says I am being stubborn, and other labels that aren't exactly positive.

Today I got to thinking about how tired I am of being considered wrong by those in my life. I have spent the better part of my life interacting with people who think I can do no right. My perspective is often wrong, misconstrued, selfish, and all other kinds of things. But never likely anything good. 

I have found myself over the years questioning myself. It was happening so much, it would seem there was something wrong with me. I would kind of give people some benefit of doubt, but it often made things worse because there was always a deep, inner voice that felt like they weren't right - or at least that I wasn't as wrong as they thought I was. But given I was into "self-growth," and the fact that I was "supposed" to care about these relationships, it felt like I had to "try."

I often wound up miserable, but trying to act like I was Ok. But I think the people involved may have seen through it some, which kind of made things worse. It was like I was straddling the fence, and the spike was going up my ass. Lol. Never thought of it that way before. But I think it possibly accurate.

To make matters worse, I had a friend also into self-help and growth that seemed to often be on the side of me being wrong. She also "encouraged" me in the ways that the friend above does. She and I no longer speak. It got to the point that I could not take her "good intentions" any more. I also think, in hindsight, that our relationship was predicated on the fact that I was often wrong, and needed perspective, or to be fixed in some way. At least that is often how it felt, especially toward the end. But I think it was a long time in coming with various things that we spoke about.

We stopped being friends since cancer and I got closer. I suspect it was cancer that has had a thing, or two, to do with how I am in relation to relationships these days. It also has a thing, or two, with how I look at life, and myself.

It is hard to care about relationships with people who never seem to understand me, and seem to think so little of me. I also can't, and won't fake it any more, as I no longer doubt myself. I now give myself the benefit of doubt, rather than the other people. I now embrace, and love, myself enough to know when to put my foot down because something isn't to my benefit, and doesn't work.

If the people involved would be willing to go with me, as me, it might be a different story. But the interactions tell me that is not to be the case. In one case, a person doesn't even want anything to do with me any more. Some people think I should not be ok with that. What am I supposed to do about it? I can feel the push away. It is not exactly welcoming. If a person wants nothing to do with you, what is there to be said, or done? The fact is, I don't know that there is any reason for us to connect. So if you ask me if I care, the answer is no.

And, unfortunately, in a way, that can be said about other relationships, too. Dealing with cancer has been something of a relief in that regard. No longer caring allows me to stop putting effort where it doesn't belong. It stops putting me in situations that only set me up for failure and disappointment and other uncomfortable things.

I am really tired of being wrong when it comes to those closest to me. I get enough of that from those at a distance. I know I can't please everyone, maybe not even anyone, but I don't need more to deal with in my life right now. I need supportive, understanding people who will love and appreciate me for who I am, and who will actually listen to me. 

Unfortunately, they are quite rare, and it is one of the reasons I am left standing alone and mostly isolated a lot of the time. Occasionally, though, I will meet a new person who is in a good enough place with themselves and their life and with me that we are able to be in some sort of healthy communication. And, even when there are bumps in the road, they are willing to hear me out, and we can get through it, and to the other side. They respect our differences of opinion, and if it becomes a block of any kind, it is a building block.

These are the people I need in my life right now.

I sometimes wonder if we are misinformed about the things we are told and come to believe. I sometimes wonder if those things do us a disservice. I am not sure everything we say is a problem is. And if it is not a problem, then there is nothing to fix.

Maybe some things just are what they are.

Having said this, I realize we sometimes have our blind sides, and can't always see things clearly, and that I could be wrong here. But when everything in me is so much more content not dealing with the stuff I used to, and no longer questions myself incessantly, I have a hard time thinking that anything else would be more right than what I am doing right now.

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Ruminations Before I Sleep

I am laying in bed. My stomach is not happy. I actually was in significant discomfort over night. I woke up a few times, and then just fell asleep. I am actually kind of hoping that will happen again, as it is a great avoidance mechanism. 

I had been told my hemoglobin was low. Apparently that is why I have been sleepier than usual. I was assured that sleeping is a good thing. I was also assured that there is a good chance I will have more of that. However, when I get time off of chemo, between cycles, it should get back to where it should be. If it doesn't, I got an issue that will need to be tinkered with. I do not need any more issues, thank you very much.

The doc also gave me a prescription for something that should help with my energy. It isn't something to be taken a lot, or after 6 pm. I am a bit hesitant to try it. But I am wondering if I should, just so I know what to expect, if I ever really feel like I do need it. (I think it is Ritalin).

As it is, people who meet me seem to think I am just fine. They often tell me I do not look like I am dealing with cancer. I suspect, in some ways, it does me a disservice. I think the less people think I am dealing with, the less they think I need help. 

Even as I write this now, I am struggling a bit. My eyes are feeling kinda heavy. But you can't see that. Behind the letters that form the words you may just think, if you didn't know any better, that there was a "normal" person. You might have no clue of anything that I was facing. 

Unfortunately, though, even my words do not always convey the way I would like them to. A few days ago I went off on Facebook. I was in a terrible, horrid, depressed, desperate place. Right before I went off on my tangent, I took a step back, and questioned why I was about to do what I did. Was I seeking attention? No. I truly felt that people had to see just how not Ok I was. I talk about what I deal with, but, still, I do not think many get it. I knew I would likely look bad for it. I really was falling apart. But I just did not care. At that moment, I knew I could not care. I knew I had to do it, so I did.

The reaction I got afterward was incredibly mixed. There were some supportive posts. There was a friend who saw all the posts and got greatly concerned. She knew that that was not like me. She knew something must be really wrong. I am not sure about the timing at this point, but I think it may have played a role in Leayn's recent fundraising efforts. I really should check, just for the sake of accuracy, and accurate history and storytelling. I share these things because it was the total antithesis of other reactions.

There were those who saw my many "negative" posts, and thought that it wasn't helpful, and ultimately a bad thing for me. They were critical about how it was that I was struggling so much, but still had the ability to take the energy to post what I did. They were more focused on how things came across than what was behind them. There was no apparent thought for just how bad me and my situation must have been to have precipitated what occurred. Of those who thought that, none actually asked me how I was, or if there was anything they could do for me.

It is not that they were supposed to, or needed to, or were expected to. I only mention it in terms of perspective. I have written previously about how it seems I get the most help when I am falling apart. So, if I don't go all "negative" (which more often than not translates to "things people don't want to hear"), I am not sure how much help I would actually receive, as times that I don't go "negative" are often quite quiet donation-wise. 

It is so incredibly frustrating to be so public. I say this over and over and over. I get grief regarding how I do things no matter how I do, or don't do them. I cannot seem to win. I cannot seem to avoid bing judged. I often get things from others that are said behind my back. Ironically, I am grateful for those things, as it gives me a pulse that I would not otherwise have, and allows me to address things in a way that might be helpful for others. I seriously doubt I can impact those who have originally said what they have, so I am not even trying. But I also know that if these are things I face, there are others who face them, too.

And, as always, if no one talks about stuff, nothing has a chance to change. I sometimes wonder if I personally will see a change while I am still here to see it. While a part of me will be happy to know that any change occurred at any time, even after my demise, another part of me will be sad. 

The battle that so many think I deal with is called "cancer." But it is not a battle for me. I never use that word when I talk about cancer. If there is a "battle," it is with how society sees what I am dealing with. it is with how they see me. It is with their judgment - silent, or otherwise. It is in how they treat me, or in how they avoid me. The "battle" is with the ignorance of others - willful and otherwise. It is with the willingness of those to accept "norms" that create unhelpful pre-conceived notions and stereotypes. It is with the idea, and acceptance of, "that is just the way it is," which leads to...nothing...at least not anything helpful. 

It is also really hard for me to see how what I deal with crosses over into many things, and other people's seemingly disparate situations. Even when I try to address things that have nothing to do with me, I often find that people will think it is about me. In turn, I feel like what I am addressing gets discredited, or minimized. It is incredibly hard to be a voice for something in the midst of it,

The other day I saw Maria Shriver talking about Alzheimers. She said that she wanted to stir those unaffected by it, because she felt that is where the help would come from. I have said something similar in the past. There have been those who suggest that I go certain "cancer" routes to talk about any message I may have. I have been reluctant to that.

Those in the cancer community are likely all too aware of the issues. If help is going to come in any kind of major way, I agree with Maria. I am not sure if it is an exact correlation, but the essence I think is the same. It does seem, on occasion, that those who face cancer are the ones who might just understand the most. They may even be the ones who want to help the most, but due to similar circumstances, are the ones who can help the least.

The same goes for those who have faced other hardships. They are the ones who have the biggest hearts, and have the desire to help, but often aren't particularly able. 

I want to wrap this post up in a neat, little bow. I was trying to figure out how to do it, but just can't do it at the moment. I guess I will just let the things I said speak for themselves.

I have a feeling I could soon be asleep. That would be really nice. I really should try to eat something, but I can barely move. There are times my body is just so incredibly heavy, when I can sleep, that works, but when I can't, you may find me doing something like this. You probably have no idea just how much I do from bed.

Later gators.

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