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A dear friend and I decided to do start a podcast for black spoonies.
(Ify is that friend, I’ve mentioned her before. Hi Ify!)
Not that I feel I have to explain myself, but for the record, it’s not a self-segregation thing (duh! have we met?), it’s a solidarity thing.
As black spoonies we face different issues that we need to address while we’re united with the rest of the spoonies in the world, as they often complicate or exacerbate our conditions and the care we do or do not receive.
For examples, see this video I watched live on the Washington Post Facebook page recently, in which Harvard professor David R. Williams discusses Racial Bias in Healthcare with Washington Post reporter Kimbriell Kelly.
What’s been on my mind.
As has happened in several beautiful conversations of late, the topic of my ability to keep an elevated mood has come up also.
I was reading an article on The Mighty (which I just discovered OMFG that is a great site) about people who have painsomnia. Like me.
Later on Femsplain I read about a woman who wants to change the way she presents herself in photos. Her point was that she writes about all sides of a disability or chronic illness they have, but shows mostly happiness in pictures.
All of that added up to thoughts about how I convey the cancer journey.
Cancer is no picnic, but my smile isn’t fake.
So I started thinking – how accurate is the picture I paint of my cancer experience?
Though I do tend to have a glorious undercurrent of joy (that took me decades of self improvement to attain), I have some hard days too.
I’ve written about them before, sometimes in my sarcastic, jovial tone.
But don’t let that tone fool you- it’s part conscious choice, part coping mechanism.
At all times – and I do mean at ALL times – I am also afraid, sometimes to the point of being petrified, of the journey I still have ahead of me.
Cancer, the sequel
Next week I end chemo for Chronic Lymphocytic Leukemia, also known as CLL (which as I’ve previously stated is recognized now as a type of Lymphoma).
My two last treatments are on Tuesday and Wednesday of the coming week for that disease. My doctor’s already positive that I’ve reached at least partial remission.
But the mass in my lung, which seemed to have shrunk just enough to indicate it was cancerous, stopped responding to treatment, and is now growing again.
I have no idea if it’s lung cancer or a higher grade and different type of lymphoma. I just know that my oncologist plans to refer me to a colleague of hers at the Lombardi center, where there are more resources than at her onsite facility.
It’s scary when your doctor believes that your second(ary?) cancer is above her pay grade, so to speak.
And I’m not just scared, I’m worried.
Worried about what it means for my family.
Worries about the harsher chemo.
Even worried, silly as it is, about losing my hair.
And I also feel woefully unprepared.
I have not filled out any of the paperwork necessary to receive certain services nonprofits and the government have earmarked for cancer patients.
Not having my shit together can impact my family in a way that wouldn’t have been as big a deal if I was at the end of this journey, as I previously thought, rather than maybe half way.
But to be fair, I came by it honestly. Some days I barely have the energy to read articles on Flipboard, or send tweets.
Plus, I’m as far as I can get while waiting on things to be faxed to me.
But it’s exhausting, and I already have pretty low energy with anemia as a symptom of the Lymphoma. It’s under better control but my red blood cell counts have not stabilized during this whole adventure.
…Stupid bunch of feels…
Then there’s my business.
I was ready for six months of keeping the big client that keeps the lights on and maybe one other gig. I can now only manage the big client, though thankfully that’s a team effort, and the folks I hired to run point while I’m sick are doing a fantastic job executing my orders.
Now I find out that I have to figure out how to sustain that for however-many-more months of harsher treatment that might mean radiation or lung surgery or chemotherapy again, or all of the above.
Any of those emotions and thoughts are going through me, especially during the painsomnia nights when I can only lay there, sweating.
Here’s the thing though.
I think about those things.
I experience those emotions.
But years of personal development have taught me how to get better at not dwelling.
When I was 8 years old, reading my father’s personal development books and practicing hypnosis on my sisters, I didn’t know that you weren’t supposed to take changing your life seriously.
All I had to look at was my Dad, who spent his whole life on a journey to better himself, which often worked.
He and my mother taught me to Believe.
I don’t mean in a religious way – I didn’t get “saved” until 1992 when I was in college. My mother, decades later. We went to my father’s Methodist church sometimes when we were in Nigeria, so yeah we all believed in God, but this isn’t a religious message or even a spiritual one.
My parents taught me to have a vision, then make it reality. They taught me this like it was normal.
My father taught me this like I was a boy.
So now, 30+ years after sticking my nose in that first hypnosis book, I have the naive belief that there are things in life that I can bend to my will, that the trick is figuring out how.
And yeah, I’m fully aware of my naivety in thinking this.
But again, the thing is that it actually works for me. It’s how I became a rainbow-striped unicorn.
Not universally, not in some magic wishful thinking way. In a make-a-way-out-of-no-way, because-there’s-no-choice way.
From when I was experiencing a period of poverty, I also know that when you have nothing, your dreams are more like “buy better food” or “find a home that doesn’t have mice”.
I come from a somewhat privileged background, but also experienced my fair share of hardship, because my parent’s family weren’t always wealthy either.
Nor have I been- even when I had more means than most, I spent most of it on my health care costs.
Having had both experiences, it gives me a deeper gratitude for what I do have. And that’s where my sunny disposition comes from – years of hard work and gratitude.
And the hope that I can find a way to give the gift of inner joy to other people, minus all the bullshit facade.
In my eyes, each of these new circumstances, from having the chronic illnesses, to the two types of cancer, against the background of being a black female person in America, is a royal pain in the ass.
But each of them is also a graduation in the lesson of how to stay happy in life.