I don’t know who needs to hear this, but please don’t pick up a drink because of all this. Statistics show that the need for liver transplants has risen by 300% since the beginning of Covid – as the stress of the pandemic has pushed so many into alcoholism. This gestures wildly is every bit as terrifying; don’t allow it to push you. I know you are hurting, freaked out, panicked. For an alcoholic, that’s very scary territory. Our own minds tell us unwinding with a drink will chill us out. We fight the urges to drink, yes. But we are also fighting our own brains. Our own bodies. Our disease. I know it’s easy to say … who cares anyway, as mad as the world has gone!? ME. I CARE. So many people care, sweet friend. You are loved, and we need to be of soundest mind to figure out where we can serve next, how we can be the antidote to the hate. Hating is easy, and any old addiction will fall right in line. But loving is hard. Fighting is hard. And requires soberness of mind, and fire of belly. Listen, Beloveds: There is absolutely nothing that using won’t make worse, I promise. Nothing. And the good people of America need you – your love, your example, your strength for whatever crazy is ahead. Use your tools. Call your people. Plunk your ass in a seat at a meeting. Lean into your spirituality. Ask God for help. Practice self care. Just don’t pick up a drink. Please. You’ve worked so hard. I SEE YOU. Stay strong.
This morning, before the sun even rises, I am proper grieving for my daughters and granddaughter.
The election is over. The political ads will stop. Obnoxious snake oil salesmen will cease screaming at us through our television screens.. The mass mailings, like so much kindling for fire, will cease to stuff our mailboxes.
And we should be glad for that, at least. But we aren’t afforded that pleasure. There is no pleasure to be had at the feet of bullies and liars.
Old white men triumph, which should surprise none of us. We should be able to take a breath now, but instead we are gasping for air.
Tyranny has won. Hatred has its day.
I seem to remember reading in the very same ancient texts he used to pander to the people that evil will ultimately prosper on this plane of existence.
I had plans to go to the pool at the YWCA today, but about half an hour ago, spiked a sudden fever. So my plans went from swimming to resting. Resting, in case you don’t know, is a very recurrent activity if you are fighting Ehlers Danlos Syndrome OR cancer. With those two conditions onboard, I have to rest so much.
For a couple of years now, I will spike these fevers with no infection, no apparent cause. They’re awful, rising within minutes. We called them my “mystery fevers.”
So finding out six weeks ago that it’s caused by leukemia, it all made sense. Fevers and night sweats mean my body is fighting ever harder. It’s good to know what was causing these, as well as the frequent infections and extreme fatigue. If I pop one fever, I usually pop a few more during the course of the day. BLARGH.
And it’s disheartening that there is no cure for my type of cancer, not even chemo will cure it for good (it can however slow it down some, when it comes time for treatment – and it will.) Might be in 2 years, could be in 15-20. “Twenty years!” you might be thinking, “That’s great!”
Is it, though? If I have to battle fevers, and night sweats, and crippling fatigue for the next 20 years? I am struggling right now. Becaus actually, they both suck. I am admittedly not Miss Merry Sunshine about my chronic illnesses on hard days. It’s the most frustrating thing in the world when you just want to feel decent and enjoy a long, happy life, but a host of chronic conditions put the kibbutz on so many things.
Maybe this explains why on “good days,” when I can do things with my friends and family, or participate in any activities, I am ECSTATIC.
I appreciate good days so much, I take as many pictures as I can on good days, even of little things. Because on days like today, I go back and enjoy those pics, and the memories attached to them, and look forward to having more.
It reminds me that more good days WILL happen. Because there must always be hope. Hope I desperately need.
There is no consequence to not tweezing your brows even though you can see two errant hairs close up when you look in a magnified mirror.
Your family will not fall apart if you have leftovers three days in a row.
If you wash whites and colors together, nobody has to know. Nobody. Will. Know.
A three-hour trash TV marathon is good therapy.
A nice, well-timed depression nap can make all things new.
Your kids can eat an all-beige diet for all their preschool years and be fine (Flintstone Chewable’s cover a multitude of nutritional sins.)
Listening to really good, really loud music is CHURCH.
Staring off into space for extended periods of time is not a waste of it.
Holding hands is not just for children.
Don’t forget to lollygag and dilly-dally on the regular.
Store-bought is fine, if you can’t make your own serotonin and dopamine.
Paper plates are a mom’s best friend.
Animals are kind of superior to (a lot of) humans.
Remember that “no” is a complete sentence.
Cut ties with people who make you feel less-than important. Or LESS THAN, period.
Buy the concert tickets. You’ll almost never be sorry.
Not a single soul on this planet is better than you. Straighten your crown. You deserve to be wearing it.
Straighten your sister’s crown too, and remind her she’s a queen.
Hit the meeting. (If you know, you know.)
Be sloppily thankful for blessings, and ardently prayerful for troubles.
Shave your legs. Or don’t. No one cares.
Tomorrow is a fine day to start what you put off starting today.
Write the words, paint the picture, sing loud and badly, laugh until you pee yourself a little. And then laugh again.
And remember you are hurtling through space in a big, blue marble through an infinite, ever-expanding universe, and you yourself are made out of stardust and moxie for the express purpose of learning to love and be loved.
Being diagnosed with leukemia on top of managing a half dozen chronic medical conditions has made some folks state with a vague indignation:
“That’s not fair.”
And in response, I can only say “no shit.”
Bless them for recognizing it’s too much. Because it IS too much. But the truth – whether you are a believer in Jesus or not – is “too much” is a normal unit of measurement for the bullshittery we must endure in this life.
“It’s not fair” always takes me by surprise. It’s like, Huh. Whats that like…thinking fairness was a viable option in the first place?
I think of things should be fair, of course, and I will try to advocate against the mistreatment of others. But sometimes “others” are not the problem…standard issuehumanity is. Our bodies get busted, our minds get screwy, our spirits falter.
Where one person fights health woes, another might struggle to put food on the table. When one is brokenhearted, another worries about her children constantly. Job troubles, anxiety problems, the list is endless.
If you’re really lucky, you won’t have to contend with all the above simultaneously, but perhaps you have. Or are. I have been all at once before, and I guess it lent me an anxiety-laced sense of a transcendent acceptance (whatever that is. I’ll have to ask my therapist.) Anxious some times, yes – but accepting.
I’m not angry with God, not anymore. , I’ve survived a bunch of really agonizing things, and somehow managed not to pick up a drink in 23 years. And that’s astounding. I never expected sobriety to “stick” for me, and I’m befuddled that it has to this day.
I pretended I had strength, until I did. God and I came to spiritual fisticuffs, and he won when I surrendered. White light meets white flag. Something shifted.
It was confirmed to me during the hard years what I’d known all along – life is not fair, but it’s really good. Even with cancer and alcoholism. There so many beautiful things in this world to appreciate, and beautiful people.
Yes, it’s “too much” sometimes – walking around in achy flesh, on a gravity-bound planet that doesn’t seem to get your vibe. But keep vibing, and so will I.
Occasional freak-outs will 100% happen again; I’m starting to think they have just as much right to be part of our vibe as does our holiest, Jesus-trustin’ selves. You know, for the sake of fairness.
Yesterday was a very, very good day. It had been exactly a month since my diagnosis of Chronic Lymphocytic Leukemia, and my husband and I met with my oncologist to get staged and get a prognosis, after a battery of tests.
I am stage ZERO! CLL begins with stage zero, unlike most other cancers. Unfortunately, that doesn’t mean I don’t have cancer – it just means that it’s in my marrow and blood but hasn’t spread anywhere else. My bone marrow biopsy confirmed that I definitely do have CLL, but the PET scan was clear!
My prognosis is good! We wait and watch now. I will go to the cancer center every three months forever to monitor my white cell blood count, lymphocytes, and web blood cells. But until my WBC doubles within a span of six months or I start to have lymph node problems, I am treatment free.
Will I need it someday? Most likely yes. CLL never entirely goes away. But I’m already on the one day at a time plan with my other chronic illnesses, I manage the POTs, Ehlers Danlos Syndrome, and about another half dozen chronic conditions.
Life is crazy, man. Yesterday morning I was praying for the diagnosis of CLL rather than ALL – chronic vs. acute. Chronic has to be managed, acute is trouble. Funny that a month and a day ago, I would never been so flippin’ happy that I have any kind of cancer. Now I’m praising God that it is not acute, or do I require any treatment right now.
I didn’t need another major health concern, but I feel like my training wheels are off in this regard. I already live illness every day. And whatever this brings, I intend to rise to the occasion. Probably while doing a lot of bitching now and then, and maybe some crying, and a whole other layer of frustration…
But I’m pretty scrappy.
Thank you for all of you who have been praying for me. It is truly the best case scenario. I love my medical team and I’m so grateful for them as well.
Okay this is the proof I got out of my actual pajamas yesterday, if only for an hour.
By: JANA GREENE
Hi. In the interest of journalistic integrity (haha), I feel like adding a disclaimer of some kind to the entries I’m going to be adding in Words by Jana Greene. Because I’m a writer, I like stories to have a clear beginning, middle, and end. I like when I can weave the narrative in clever ways or end up with a cohesive piece.
Yeah, this is NOT that.
When writing about this journey in particular, I am writing stream-of-consciousness-style, and if you don’t want to read me because this page may be full of incorrectly punctuated, rambling, seemingly random words, I get it Sis. I am not over-editing, because that breaks the intention of sharing my heart and makes it sort-of clinical in a way. I’m going to get plenty of “clinical;” this is the opposite, I think.
Yesterday, I had a rollicking good afternoon. Weirdly good. I put on a dress, asked my husband if we could go to dinner. I’m so tired of having cancer-ese language in my head.
I did my makeup, which happens with the relative frequency of a solar eclipse, and my hair – which is very long and very thick, and EXAUSTING to my hypermobile shoulders. And THEN – after alllll that – I look him dead in the eye. “Baby, I’ve used every ounce of my energy getting ready. I’m exhausted.”
“It’s okay,” says he. “Want to order in wings and binge-watch Dexter?” GOD, I LOVE THAT MAN.
So, lickity-split, I changed back into my “Agape Against the Machine” oversized t-shirt, ordered food, washed off every bit of makeup, plopped on the couch with my beloved, and ate chicken wings King-Henry-the-Eighth style in a MOST unladylike fashion with what little energy I had left.
The energy of a sick person is finite. And some days, it is more finite than others. “But you just DID it,” they say. “Yes!” say I. “And that’s why I can’t do it again!”
Doling it out over the course of the day must be deliberate. We don’t just “do things,” we do things that deplete our body’s energy ration in parcels. The parcels are not of our choosing, even. We wake up, take stock of pain, and – if our pain to exhaustion ratio is high, goals for the day get voted off the island until you are left with one crappy thing to do that isn’t even fun. Disabled bodies are utilitarian, and have no time for frivolity, on low-energy, high-pain days.
The ante was significantly upped with the cancer diagnosis June 13.
Tomorrow morning, I go for an invasive bone marrow test, which by all accounts SUCKS. I feel like up until now, I’ve been pretty accepting of my diagnosis and kind of positive about all this, but I ain’t feeling brave this morning. Fight, Flight, and Fawn all have seats at my breakfast table right now, and they look a hot mess.
So, today, I interrupt my own sometimes-toxic positivity with a special news bulletin:
I’m scared.
For the first time since the diagnosis, I am legitimately scared. I don’t know what triggered the fear (having cancer, probably – ha) but as tomorrow’s test looms, I’ve decided NO THANK YOU PLEASE, I don’t want to do this cancer thing. But thanks for the offer, I already have a full schedule full of trying to stay alive. I already gave at the office. Dance card is full.I have prior engagements. But thanks for stopping by!
But that’s not reality, so I just need to be able to say, “I’m f*cking terrified.”
When a disabled person gets cancer, there are “people of the Lord” who assume God’s got it OUT for me. Why else would he “allow” all of this? Or this secular quip: “You’re the unluckiest person I know.”
But I don’t feel unlucky. I am surrounded by light and support and love. I just feel scared today, with a chance of intermittent sadness. Not strong. Not perky and upbeat. Just run-of-the-mill scared. I feel both: Scared AND lucky to have such an amazing tribe helping me make it through.
So I’ll shut this laptop, and light some candles, and get into a quiet spot, and breathe deliberately. I might take out my tongue drum and play some tones, focusing on each one as it completes its own life cycle of vibration, letting the sound take my fear down a buttonhole. Light some sage, let it’s perfume reassure me. Pray honest. Do some breathwork. Maybe I’ll get into the paints and make a mess today. Talk to God, and listen for his answer back, which can come in a myriad of ways – you just have to have the awareness to hear it. (Just ask for greater awareness of the Divine. God wants us to have the peace that passes understanding. He is not stingy with it! Don’t believe me? God lit in the forest by yourself for a while and receive. I highly recommend.
These are some of my tools to treat the fear when it comes. I acknowledge it, thank it for trying to protect me, but busy myself in art and music until it can stop actin’ a fool. And perhaps in the coming weeks, I will have another energy burst and put on the little black dress again, and actually make it out the front door! Maybe get all the way to a nice restaurant, where I’ll be able to stay awake, digest food like a normal person, and have a whole-ass date, start to finish. My husband deserves that – and so much more.
Words by Jana Greene 