If I talk about nausea, most think they know what nausea feels like. The thing is, the nausea I feel is nothing like any nausea I have ever felt - not even at its worst, pre-chemo/cancer.
If I talk about hair loss, others try to tell me they know how I feel. They will have hair loss for a myriad of reasons, and think it relatable. While on some level, it is, on some level it is not. Along with hair loss for me has come a myriad of other things, due to the chemicals in my body due to cancer that could possibly kill me.
While it might seem extreme to tie all of that together when we are "only" talking hair loss, the fact is that it is very difficult to take things isolation. I am sure you are just as good at the jumbling and tangling as I can be. :p
I keep trying to figure out how to explain what seems to be unexplainable. I question why this is so important. Is it my ego? Is it a contest I feel I need to win? What is it that drives this underlying need to try to explain what I deal with?
I know part of it is my need to feel understood. Not sure what drives this need, but often being misunderstood and misjudged probably plays no small role in that. Another piece likely is my desire to always share/inform/educate people. I know how wonderful it would be to have a certain mentality/level of empathy/compassion/understanding around me. Maybe I can somehow offer something in a way that could help others.
I wish I could totally discount my ego and any role it may play in this, but I am not sure I can. In saying that, I am concerned it could overshadow everything else, as it has a tendency to sometimes do.
So. Having acknowledged my human paradoxical self, I am going to ask you to read this from any perspective that might help broaden your perspective, or have your eyes open just a bit wider. I am going to ask you to consider not knowing what you think you know. Sometimes being in the not knowing place is more of a help to someone dealing with something extreme than the "knowing" place.
I realize that isn't exactly what we've been taught. But the times that the "I knows" don't always fit the way we think they might are sometimes more painful than other potential options. I still think back to a documentary in which a woman dying dealing with cancer talks about how hard it is. Her sister says, "I know." In my head I heard, "Ouch." How could her sister KNOW?
The woman dealing with cancer called her on it.
Earlier today I was trying to find this "magical" explanation that could explain why whatever I may describe to someone not dealing with cancer is different than what they may think without totally removing it from any potential plane of reference or understanding. What I came up with is an underlying current.
You ever feel the ground vibrate under your feet? Or ever been on a roller coaster? How about an earthquake? Ever been in one of those? Do you get seasick in a boat? Or have motion sickness in general?
What if, as you went through your life you always had the sensation you felt in any of those circumstances ALL THE TIME? What if you had more than one simultaneously? But it was nothing you could stop, and it was nothing you could take, or turn, off.
Whatever you dealt with from morning to night to morning day after day and week after week had this filter that every part of your life had to be lived through. Even the things you think you knew would likely seem very different when having to filter through this current.
Then when you tried to explain how you felt to someone about how you "can't sleep," and they told you they understood, you might think they really didn't. That undercurrent affects more than just your ability to sleep. Not only do you have that, there is a whole long list of other things, PLUS this underlying current.
You would likely appreciate the fact that they were trying to understand, but there might be times it felt more like a period than a comma. It might feel like their compassion ended, or at least paused, where you might have hoped your explanation would have been the beginning of some greater understanding or empathy.
I am never looking to drag anything out, and I never want pity. But I desperately want people to better understand just how different dealing with cancer can be. Superficially it can look all Peaches and Cream, especially when many will not surface, particularly when they are at their worst. Even when they may not be so great, they may be able to act the expected role. You may never know all - and actually likely will know very few - of the issues they face. The fact is, they know you probably don't want to know. And you likely don't.
At least if you are aware of this, you have a shot of giving a person you care about the ability to be their truest self - at least around you. It would be an incredible gift. It would likely be one of the most precious gifts you ever give, as it may not be easy hearing what they have to face. But, maybe, if you hear the things I say you will be better prepared for what might come. It won't be as much of a shock.
The thing is, you also have the ability to walk at any time. You never have to face a single thing another faces. You have the ability to make that choice. People like me don't. That current is always there in all ways - emotionally, physically, fiscally, spiritually, and when it comes to anything we do and anyone we do it with. It never discriminates.
It is with me as I sleep, as I write, on my trips to the bathroom. It is kinda like a life titinitus. It just doesn't go away, no matter how much I might wish it to, no matter how desperately I might want it to. It is always there.
It occurs to me as I write this, that in some form or another, we all likely have this kind of thing. I think the difference might be that unless there is a reason to be aware of it, it mostly goes by unnoticed and unconscious. When you are mostly feeling Ok, and life is mostly doing Ok, there is likely little reason to be aware of it. But when nothing really ever feels Ok, and when life's carrier, the body, is having major issues, it is a very different story, at least, in my case.
In my case, my awareness of many things is much more acute than ever. Is that a good thing? If in some way it helps others to question things they would not otherwise, I'll say yes. I am not always sure, though.
As always, this is written with the hope that my heart is heard. However, the head had an obvious influence. I hope it has been helpful in some way. But, if not, that is fine, too. There are many different realities out there, and I know mine couldn't be farther away from some who read my words. My intention would have been to try to close that gap a bit, but if I did not succeed, oh well. :)
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