I feel better and better and worse and then better
Than ever, than ever, than ever
I feel much better, and better, and worse and then better
Than ever, than ever, than ever, than ever Frightened Rabbit, “I feel better”
For those that aren’t aware, I have been sending several entries that I’ve written to the blog site “The Mighty” (a community centered on people suffering from disabilities and illnesses). Six to Seven of them have chosen for publication.
When I sent my first submission, I think was just to find out whether my writing was “good enough.” After that one was approved, it began to evolve into a way to get a little bit more exposure for this blog. What had begun as a form of public therapy was starting to become more than that. I hoped that within the Mighty’s target audience there might be more people who could relate to my feelings and message.
What I didn’t know initially (but of course do now) was that all or most of my Mighty publications were automatically re-sent to Yahoo News online to be republished in their lifestyle page (I clicked a box that allowed that this could be done, but mistakenly assumed I would at least be told if this happened). I only found out about it after the fact by randomly googling myself.
My first thought was “Cool! Wider exposure!” But then I began reading the comments section. It’s amazing what people will say when they don’t know you personally and there are no real life consequences for their actions.
For example, a commenter on one of my older articles suggested that I had no right to be upset because he’s read about a 4-year-old killed in the news, and that was a much bigger tragedy. I, on the other hand, had already lived a good life and therefore just needed to “get over it”
The comments on my most recent submission echoed much of the same. “We all die someday” was the general theme, so I need to just deal with it. Another expressed indifference to her own death. Finally, there was the mandatory Bible thumper: “If you accept Jesus into your life, there will be no reason to be afraid of death, because eternal life will be waiting for you in heaven.”
I do wonder sometimes at these hyper-religious people’s certainty that heaven awaits them. So many people who claim to be Christian are just really bad people. Do I really believe that they will fly up and get eternal life just because they go to church on Sunday? No, sorry, I don’t. And what about that whole, “It is harder for a rich man to get into heaven than a camel to get through the eye of a needle” thing? Don’t you lose just the tiniest bit of sleep over that? You aren’t starving or begging for food. You have a home and a car, how can you feel so sure that you don’t meet Gods definition of rich?
And if there is a God who endowed me with an analytical brain, would he really punish me for using it? Exploring the arbitrary nature of all of this is one of the reasons why I love to watch TV’s “The Good Place” so damn much. But I am digressing, I know.
So what about those comments from the “we all die someday, so deal with it” crowd? If they are so ambivalent about the prospect of death, do they feel that way about everything that is lesser than that? Do they smile and “deal with it” when people steal money from them? When they get fired from a job? When they have a falling out with their children? What if they get in an accident and become crippled? Why is it okay to be upset by those things, but not by death itself? 1) Death makes us uncomfortable, and 2) we have been too influenced by movies and hero stories that perpetuate stereotypes that people with terminal illnesses must always be brave and positive.
A quick click on their user profiles tells me everything that I need to know. These are people who literally scour Yahoo news all day putting people down and criticizing articles. Which means that they are probably either retired or they are living in their mother’s basement. These are people who are living unhappy and unfulfilling lives. Can it be any surprise that they believe themselves to be indifferent to the thought of death?
I am tempted to wish myself a magic wand that would allow me to test their supposed indifference to dying. Do you suppose the likely 65-70- year old telling me that I’ve lived a good life already at 40 (and therefore have no right to be upset) would be willing to give back the last 30 years of his life and trade places? If I actually had the power to make such a trade would he still be be so ambivalent? Surely he would not protest since he clearly doesn’t believe there is any life worth mourning over after middle age anyway.
I know, I know, I should feel sorry for these people. What a sad, bitter life they must have if they think that losing it is no big deal. What a sad, bitter life it must be to sit around on the internet criticizing people and contributing nothing back to society. Their dopamine rushes come from hitting the “send” button on a nasty comment instead of from spending time with loved ones, achieving something of value or giving back in some way. They waste their lives in such a way that they really don’t have value.
Meanwhile, here I am, trying like hell to stay alive to watch my kids grow up. Life is SO wasted on the living.
Of course I can just dismiss the faceless commentators. Except. There is a part of my brain that wonders how many others there are who are thinking the same things but who don’t or won’t say a thing to me. At least most won’t, anyway.
I am almost certain that my blog postings and updates on Facebook have become too much for some people. I am 16 months into my diagnosis and here I am, still kicking! Shouldn’t I have died or at least be on the brink of it right now? And if I still write and provide updates this far in do people think I have overstayed my welcome of sympathy? Perhaps they think that I am posting and writing because I need the attention? I would gladly trade the attention back for a few decades of life without surgeries and chemo.
I am also sure that there many think that by this point I should be more adjusted to my diagnosis and settled into playing the part of “the happy/positive girl with cancer who no longer complains or fears death”. I strongly suspect that there are those that probably think that since I am still here and still healthy that I must be overplaying the extent of my disease and will be just fine.
But mostly- at least to my face- everyone’s been supportive. The one exception, of course being variations of the infamous “we all die someday” comment that I have learned to despise so much.
One of these comments came from someone who has been having some health problems (significant, yes, life-threatening? No).
Maybe we are ALL just dying slowly. A comment like this displays such a fundamental lack of understanding of what it’s like to KNOW unequivocally that your death is near. To know what it feels like to not be able to see or plan for life past 12 months in the future. Knowing you are going to die is SO different than sitting around musing about it.
Maybe people who make these comments will realize this when I am sicker and in pain and closer to the ending. Maybe they will realize that as they attend my memorial service- still very much living and breathing and making plans for their future. Maybe it will occur to them then that dying young is not something that anybody should be jealous of. Maybe it won’t.
Regardless, all of this newly found negativity brought to me from the land of anonymous internet has gotten a small part of my brain churning. SHOULD I be getting over it by now? SHOULD I start talking about it less?
I think it would be easier if I could get to a point where I feel stable.. where I am not on such shaky ground that I don’t fear that my very next scans will send me into a final tailspin.
But I may never get there. I am locked into that tenuous spot between having either only a few months left or perhaps a couple of years left for the indeterminate future.
Getting over it is never going to happen. You are never going to be able to stop me from thinking about death. Never. It would equivalent to you completely shutting off the part of your brain that thinks about anything in the future. As it stands right now, my short term future includes death, so any thoughts about the future means thinking of dying. I do hope that someday I can claim that I no longer fear it, but I haven’t gotten there yet either.
If getting over it isn’t possible, could I just learn to “deal with it” as the comment suggested? For clarity’s sake, I am dealing with it to a large extent already. Although my blog therapy might make it appear so, I do not actually spend all of my days sitting around crying and bemoaning my fate. I get up in the morning. I spend time with my family. I laugh a lot. I cry a little. When I am around company, I don’t actually talk a whole lot about what is happening to me because I know that it makes people uncomfortable. I save it all for this blog. That way people who want to know can seek it out and read it, and the people who don’t want to read it don’t have to.
That said, I could possibly do more in other areas. Since recovering from my surgery and having that huge pelvic met removed, I am physically feeling better than I have in a long time. My moods still cycle on a daily basis, but lately the highs have been higher and the lows not as low. However, I am still struggling to get myself “unstuck” from this holding pattern.
I am hesitant to invest myself in any big change for fear that it will just get thrown out the window with my next set of scans anyway. I know that I need to unstick myself, but I am not sure how quite yet. Maybe it’s with something as simple as trying to work diet and exercise back into my life again. I don’t expect miracle cures, but it could give me back at least the illusion of some control. Or maybe it’s something deeper than that. Something that has been rattling around my brain, but which I am still fearful to commit to in writing.
It has also occurred to me that maybe I should cut back on writing and talking about it so much. But it’s not as simple as that.
I keep thinking about how before my diagnosis I knew so little about cancer. I thought that metastatic cancer always killed people quickly. I thought that everyone going through chemo lost their hair. I had no idea how the extent of a tumor’s genomic profile influenced the drugs they can take and their final outcome. I think that part of the reason that I knew so little was because nobody ever talks plainly about all of this stuff. Nobody wants to know the scary details of a disease that can happen to anyone and which ends in death.
I have decided to continue to talk about it because others don’t. Unless you have been close to someone with the disease it often gets shrouded in secrecy. Someone gets diagnosed, goes bald, they smile, stay positive and fight bravely before fading away for a bit. Finally, you hear that they have “lost their battle” and fallen asleep forever surrounded by family.
Cancer sucks. It is indiscriminate and unforgiving and it is NOT all “part of God’s plan”. It’s time that we talk about that. And it’s time that we talk about death.
I am aware that it will make people uncomfortable. And those people I’ve made uncomfortable will think or post negative things about me. That’s just how it goes.
But I also hear from people who thank me. They thank me for helping them to put words to the feelings that they are going through. They thank me for putting them in a public forum for others to read and understand. Sometimes I even hear back from from people who aren’t sick, thanking me for helping them understand. And for helping them to better appreciate and live the lives that they have been given.
It’s those comments and notes that remind me that it is worthwhile to continue writing. To continue talking about it. And as for those that don’t like it? Well, I suppose that they will just have to deal with it.