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So in a recent post, I wrote about how recently getting several estimates that a person with my prognosis has between 2 and 9 years left to live has taught me how to find the joy in life under almost any circumstances.
I shared that for two reasons.
First because I want to be understood. People seem shocked or even uncomfortable that I’m happy or smiling in pictures.
Some have even gone so far as to confide privately that they think it’s improper of me to be so upbeat.
I’ve also had backhanded compliments that sound like they’re complimenting me on being strong (which I’m generally okay with until people use it as an excuse to abuse or neglect) but later I find out are not well wishes.
Secondly, I’ve since learned by both osmosis and admissions that many of those who are complimenting me on my show of “bravery” or “strength” think that it’s somehow inauthentic.
And yeah, eff their opinions.
It’s not their opinions that are the issue though.
I want to address this because I really am happy(ier) most of the time, and I think I can help other people be brave in the face of cancer, or be happy in their everyday lives, through things I’m learning about my situation.
And no, it never occurred to me that I should go cower in the corner, suffering in private silence because my cancer experience isn’t what people expect.
People actually DO think that and won’t be shy about telling you if they can be anonymous at the time, or think they’re doing you a favor in speaking their mind.
People actually DO think that you’re faking because you haven’t lost your hair, or some other dumb ass reason. Even though people have been with me while the needle was being pushed into my mediport.
Yeah, I’m not Brooks and this is not the Real Housewives of Orange County.
The topic of people who troll cancer patients is another post for another day.
Yes, there are special trolls
- who specialize in denying that people have diseases,
- look for people who are sick to use their images for nefarious reasons,
- or DO believe that you ARE sick and troll for other cancer-related reasons, or all of the above.
As soon as you relax a little and think you have a handle on how cancer is changing your life, you have something new to deal with.
Like the week I started to write this, I found out I’m neutropenic, which means I have a low supply of a particular type of white blood cell that fights infection. (Which is now nearly a month ago, since it takes me forever to finish these.)
It’s a lot to deal with no matter what kind of cancer you get.
So for people who don’t understand, people who think my happiness is some kind of front, people who think I should be angry at the Creator, people who think I’m in denial, people who will never be convinced, and all the other people who love me, like me, or are following my story out of morbid curiosity?
Let me break it down for you. We’ll start with this gem- which I get much more than I imagined I would.
Why can’t I be “sad or angry at God like the average person?”
A- I’m not average.
If I told you how many near-brushes with death I’ve escaped you would not have the mental bandwidth to believe me. I will likely have to fictionalize my life story or leave a BUNCH of stuff out for it to be believable if I ever write it.
B- By the time those estimates about my mortality rate were published they were probably already old. That’s how fast the area of Lymphoma is changing, as previously mentioned.
So yes, it’s possible that I have 2 to 9 years left to live.
But it’s equally likely that I have 2 to 9 years left before I have a relapse.
And also possible that I could have a 20 year remission period, or that non-Hodgkin’s Lymphoma will have a cure by the time I have a relapse
No seriously. The five year estimates are currently in flux because not enough years have passed since the last few big advances.
C- How well can you get focused on getting well if your mind is preoccupied with dying all the time?
See, I have a history of dealing with chronic illness and pain.
Over 20 years of experiences fraught with ups and downs, mostly downs in the past 9 to 11 years when I was in denial over the fact that I’m probably permanently disabled.
D- I’m an odds over-comer. It’s just who I am.
I shouldn’t even be a thing but here I am.
Let me reiterate this to you.
I’m not big on denial. I like to face facts.
However I don’t consider statistics facts.
For example, life expectancy stats tell you the mean (mathematically speaking – but sometimes also not nice) outcome in a group of people with similar circumstances. Plus it’s a little more complex than it looks with the aforementioned rapid advances in Lymphoma.
On the other hand, you must understand- I’ve come to grips with the reality of possibly lasting less than 730 more days.
It’s WHY my mission is not to waste time being sad.
It’s why I’m going back to therapy to manage the possible onset of depression.
Trust me, I spent about a week in bed after being hit with that news.
My current joyfest is the aftermath of that.
It reads as some people as denial. I see it as Faith.
Not faith in the idea that I won’t be one of the unlucky ones who dies. I might be. That’s just a fact.
It’s faith in the miracle that I’m here at all, that I’m still here, able to tell my story, perhaps blessed with the ability to continue to affect thousands, maybe one day even millions of lives.
My whole life is a testimony.
My whole life is a testimony to how to react to people who say that you can’t or shouldn’t or won’t or couldn’t.
I was told I would never be able to walk without severe pain, like Larry Flynt.
I used to brag about not using a wheelchair. But I learned later that the pain I have every time I walk could have been prevented or reduced. Ambulatory wheelchair users exist.
So now I’m just grateful that my internalized ableism over wheelchairs didn’t make things worse than they are.
I was supposed to be in the hospital with severe bacterial pneumonia for months in 2012 and almost died. My possible death was discussed within ear shot several times.
They had planned on intubation, with a high likelihood that the tube would never come out in my lifetime. With the help of a doctor in my family as my health advocate, I refused.
I left that place in three and a half weeks, inspired by my mother’s eyes, infused with the energy of prayer warriors.
You’re reading the words of a chick who invented her own job 18 years ago, and within two years was making enough to feed herself. I was self employed, then an employer before most people ever heard the word “freelancer” was a thing, when “consultant” was code for “unemployed”.
Shorty? I’m a black female disabled womanist entrepreneur working on the marketing sub-section of technology whose briefs dips into journalism broke a story about the iPhone, and helped to popularize business blogging.
Not to mention that I also helped shame the president of the 8th most populated country in the world into caving to the demands of a hashtag leveraged into front page news.
I might as well be a rainbow striped winged unicorn, as much as I’m not supposed to even exist. If it wasn’t for the double disability I’d probably be world-famous by now, as much as that ever paid a bill.
My point – besides reminding myself that any handful of my achievements should give me the self-worth to keep fighting to live – is this.
I. Defy. Odds.
Therefore I take a particular joy in disbelieving them. What do I have to lose?
If I’m wrong, this slowly changing new way of life is just another way I’ve reinvented myself over the past three decades since I started reading my father’s self improvement library, before anyone told me you’re not actually supposed to make any changes LOL. And I’ll die filled with joy.
If I’m right? I hit the ground running by the time the cancer show is over, having finally found the means and the time to right the business part of the ship that is my life.
So now, if you are a person like me, who naturally or through sheer force of will doesn’t believe in the odds?
If you reject suppositions such as “well, odds are, this thing is going to come back and kill me later, even in the likely case that I beat it now?”
Then when someone tells you that you have an intermediate prognosis and that this means it’s likely you have only 2 – 9 years to go, you immediately figure out how to beat that rather than prepare for it.
Which ends up being the same thing.
So far from being mad at God, I’m actually grateful.
From the beginning I’ve believed I will be healed. I have always believed that, wholeheartedly. Which some people think is dangerous – what if I’m let down later?
Well, what kind of way to live is that? Never experiencing the thrill of expectation, or cautiously curtailing your joy?
You know, it’s actually human nature to not get your hopes up, so to speak, because we’re wired to avoid pain as much as we are to seek joy.
But we humans, over time, swing to a preference of avoiding future pain at the expense of joy in the moment.
The first time I realized that, I decided to train myself to reject that notion. And I still falter – it’s hard for me to believe in romantic love for fear of the pain from the last two times I was left heartbroken.
On the other hand, in daily life, I’ve come to think that it’s silly not to be excited about the best possible future.
If you’re wrong, you haven’t lost the joy in the moments leading up to the crushing turmoil. And I don’t know about you but I tend to bounce back better from pain if I was happy leading all the way up to it.
And wow, what if I’m right? The idea is very exciting.
Therefore, I’m as far from being mad at God as you can get.