Saturday, May 2, 2015

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.

Ps one last thing. If you find my work thoughtful in some way, if you appreciate it, if you appreciate me, please support it/me by becoming a patron. $1 may mean nothing to you, but it - or any multiple of it - helps me to survive the financial ramifications of living with cancer, and dealing with the issues of not being able to do anything to support myself financially while I sleep and dream for hours on end. If anyone knows how to spin gold from dreams, please let me know. In the meantime, I really do need your help. Thank you. Patreon.com/Jolope

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