I speak up for myself now. Well, sometimes. As long as it doesn’t rock the boat TOO much. As long as the person I have conflict with won’t stop loving me because I’m mad. Only when I’ve rolled the issue OVER and OVER I’m my brain ad nauseam and have decided I’m with a safe person. Only after I’ve played out the worst case scenario in my head, mini-grieved the possible outcomes. And after I speak my peace (because I’ve learned my peace has value, too,) I will fret and worry that I’ve upset someone. Doesn’t matter if it concerns life events or little frustrations, I speak. Even if it’s a whisper, I speak. Even though I know assertion-guilt will try to make me feel like a bad human. I’m starting – with fits and stops – to say when I’ve been hurt or bothered, even though I’ve been a people pleaser all my life. So… No, You cannot talk to me like that. Little Me had no say, but I’m re-parenting her, you see. I’m teaching her things I should have taught my daughters, and must have somehow over the years. They speak up for themselves, without fear of abandonment, because they know they’re safe. And Little Me is safe now too, finding her voice and using it.
Not long ago, I was having a conversation with my husband, and he used ‘FOMO’ in a sentence about a concert we were hoping to attend. He said something to the effect of, “I know having chronic illnesses gives you FOMO at times.”
“I’m sorry, gives me what now?” I said, completely unfamiliar with the term.
“Fear of missing out,” he replied. And shitfire I was not aware there was a formal acrostic for the phenomenon, but I’ve been having FOMO for years now. Because when you struggle with debilitating health issues, the only way to not live in FOMO-mode is to not make any plans at all. Nary a one. And it’s not that bleak yet. Yet.
We are going to see The Black Crowes tonight in concert, a surprise from said husband, because they are one of my favorites. But we have missed three out of five shows we’ve bought tickets so far this year, because while it’s not that bleak yet, it’s also not that great. I get sick frequently, and the pain and fatigue are out to get me, I tell you. Of all the conspiracies floating around right now, this one has the most solid evidence. My medical team can attest to it. I fight my own body harder than anything else, at present. (What I fight – like what you fight – is subject to change, right?)
Still, my husband bought the tickets because he is hopelessly bad at giving up on me, or the things we would like to do. He is also never disappointed in me when things don’t pan out. And that’s key, because disappointing people is definitely a huge issue of FOLPILD for me – Fear of Letting People I Love Down. Also, FOBAB – Fear of Being a Burden. FOMAC – Fear of Missing a Concert. The list is endless, really.
What do all of these things have in common? Fear.
Fear is the opposite of a lot of things, not just the opposite of faith. That’s too simplistic. It stands in the way of hope, makes letting go impossible. It blocks positive energy, causes despair, and chips away at our dreams. Fear itself is a very useful tool to keep us safe – as an impetus to head for higher ground when a hurricane, for instance. But as Western North Carolina grieves and toils in the aftermath of Helene, we are in collective awareness that even the highest ground can be devastated.
Fear is a warning device, but a shitty insurance policy. It doesn’t keep anything bad from actually happening. It just trains our systems to react to opening a dreaded email like we are being chased by a bear.
So, what the do we do? Live in the confines of fear? After all, it’s there for a reason. Whether we fear or not, we are going to miss out at times. Especially as a Chronic illness patient, for whom FOMO is a constant bedfellow.
And all fear is not the same. Missing out is a first-world problem, in a world full of devastation and disaster. I know that, and have experienced the hollow, dark fear of a terminal diagnosis. The constellation of deep worries that we have for our children. I get that fear, too, and that’s a whole different animal, but just as destructive.
If we are chronically ill, we are going to let people down when we make plans we cannot keep. We will try not to be a burden, but we must cultivate a circle of safe people who understand when we have to reschedule things. I am so fortunate in this regard. My friends understand that most of the plans I make are tentative. I am not flaky, but my health is.
Of course, I cannot tweak the entire tour schedule of The Black Crowes, so today, I rest. Resting is how train for events, like in the Olympics. Okay, its nothing like the Olympics. But it might as well be. People assume resting is fun. Because most people don’t get enough of it – they are forever buzzing around and getting things done (what is that like?) so resting is their side-gig. They do it as a luxury, whereas my body completely stops functioning if I don’t spend half of my damn life in bed. It’s not fun at all. It’s not always relaxing, because the fear of missing out is legit.
And the truth is that we do miss out. On a lot. But let me tell you about a side-effect of this phenomenon. I am abundantly thankful for the occasions I make a concert or party or get to run to the grocery store and run errands like a normalsauce person. Because I GET TO, you see. Oh the glee!
The sweet victory of making it to a concert. The appreciation for running boring errands. I brag to my husband about getting errands done like some women probably brag about their career milestones. Doing physical therapy at the pool, picking up a few things from Trader Joes, AND going to the bank?? Taking a walk AND getting a haircut? *Cue theme song from “Rocky.”*
Tonight, I will fight the urge to stand on my chair and scream “HEY. EVERYBODY! I. AM. NOT. MISSING. OUT RIGHT NOW!” (I will not do that, because I cannot even stand on solid ground without injuring myself, but inwardly, I will be yelling it.)
And that’s a part of me that punches FOMO in the throat. I would not be as filled with gratitude, if I didn’t have this particular set of challenges. I am not just happy when I don’t have to miss out, I am ECSTATIC.
How ecstatic, you ask? Tent Revival ecstatic. Golden-Retriever-with-her-head-out-the-window-of-a-moving-car ecstatic. And grateful? When I can experience activity in life, I am as grateful as a Norman Rockwellian family around a Thanksgiving table. As grateful as a mid-life white woman who missed her calling as a groupie, who gets to rock out to her favorite bands and yell “WOOOOOOO!” – even if she has to sit while doing it.
Blessed be, my friends/readers. (I’m grateful for each of you, too.)
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.
It has easily been the longest summer in my entire life. Punctuated by triggers and glimmers and rolling thunder, it rains almost every afternoon. The day will be sunshiny (albeit, hot!) and from a great distance, you will hear the thunder.
At first, you wonder if the noise was a motorcycle or a garbage truck in the neighborhood over. But if you listen closely, there is the thunder cadence – a low vibration awakened, that you feel in your chest before your ears can confirm its source. And then the building growl roiling over the clouds: Yep, that’s thunder. Again. Here we go.
Nobody wants thunder at the beach. Thunder is a rude affront to the vacationers. It means get out of the pool, pack up your sand buckets. Might as well eat lunch out; the beach requires flexibility. But everyone has the same idea, so every restaurant is crowded and has an annoying wait. The kids are whiny, there’s sand in unmentionable places, you just want your ass in a beach chair, your kids in the pool and out of your hair, and BY DAMN you’re going to enjoy this experience in spite of the thunder and rain. All of this started with a little thunder.
When I received the diagnosis of Chronic Lymphocytic Leukemia on June 13, when the summer was still fat with promise and completely benign. A lot of people freshly diagnosed with cancer describe the new diagnosis as a kind of hurried chaos. “For a while, it was a blur,” is a common sentiment.
But for me, it has not been a blur. It has been a sloth racing a snail and losing. It has been much pacing through my house, wandering aimlessly. It has been too much time on my hands, angry outbursts, crying seshes, and doomscrolling. I am wishing time away, and then chastising myself for wishing time away.
Because I could have 20 years with this cancer, although that’s the exception. I could also have five. Talking openly about the possibilities is therapeutic for me but makes everyone else uncomfortable. I’m not trying to make anyone else uncomfortable, but I’m trying to accept that we all have an expiration date, and if nothing else gets me first, this cancer will. That’s not fatalistic. That’s realistic. Cancer is not the only chronic health issue I deal with, but it’s a doozy.
Nobody wants thunder at the beach. But every day it comes – the realization- a rude affront to all the plans I’ve made for my life. The doctor’s visits mean crowded rooms where people wait, annoyed. I really just want my ass in a beach chair. Summertime means a season of heat and rain, that’s just the nature of the season.
And it occurs to me today that its exactly what depression feels like. I’ll be swimming with my floaties on under clear skies, when I will feel the rumble in my chest. At first, its mostly vibration, but by the time it’s all said and done, there are torrential tears and terrifying cracks of doom. They show up every day, like clockwork, suffocating me with humidity, impossible to ignore.
So, I write. And that helps. I talk to people I love and to the GTOAT (Greatest Therapist of All Time,) and that helps too. I listen to music loud enough to drown out the claps of thunder, and throw paint on a canvas, or fitfully meditate. The practice doesn’t have to be perfect. It just has to be practiced. But Jesus help me.
Please help me with the episodic depression that pops my floaties and sucks me under as soon as I hear thunder. Expect it to visit at least once a day. I can hide like a frightened animal in a storm or do a little rain dance; that’s entirely up to me – triggers, glimmers, and rolling thunder – all. Help me to accept that it’s just the nature of the season, and to keep my joy, all while realizing yep, that’s thunderagain.Here we go…
In the interest of transparency, today sucks a little. I share when I have good days and get gussied up – admittedly those are fewer and further apart. And I share when I’m struggling because I don’t want to pretend I have my shit together for social media. That benefits no one. I don’t. And I won’t. Life is messy (and also great and awful, in turn. So who can give up yet?) But today the fatigue is crushing me, literally feels like a smothering blanket I can’t get out from under. And my pain level is crazytown. People get tired of hearing about my pain, I’m certain. But I’m tired of feeling it. So I spent some time meditating. And some time worshipping. And crying. And that’s the truth. That’s me, pulling myself up by my bootstraps. Leukemia sucks. Ehlers Danlos sucks. I’m tired of physical weakness making me feel less strong as a whole person. It’s just a hell of a day.
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.
Send me your warm fuzzies, good vibies, and petitioning God for a good outcome today?
Having the skin cancer on my leg removed via MOHs surgery. Completely separate and unrelated to my leukemia, because, um…go big or go home, I guess? (*shrugs and cries simultaneously whilst rocking in fetal position, then gets up and deals with it because THEM’S THE BREAKS KID!*)
They biopsy around the legion (original legion has been removed) to get the margins and have a lab onsite to test each layer for malignancy, leaving the would open as they keep excising around it, until all cancerous cells are gone. It can take hours and hours.
It’s really not that big of a deal, especially with everyone else I’m having to contend with right now, health-wise. But I could do without the aggravation. But we all know aggravation is crappy at taking its turn, always rudely infringing on us at the least opportune times.
If you’re keeping up with my journey (I don’t know that it’s a journey solely about physical health (is it ever? we are not just our bodies, where our minds and souls live. Healing has to be a full-participation thing – and I’m going to be working on my spirit, mind, and emotional well-being with every bit as much fervor as I’m going to put into my physical self.
I need to throw a little tantrum right now. Not a full-on nervy-b, but a proper little hissy fit.
I’m so grateful for the health days lately that have allowed me to do some normalsauce stuffs recently, but Ehlers Danlos is a chronic pain and illness condition. It doesn’t take vacations.
My whole body is made up of faulty collagen. The last two nights (and eapecially today,) the pain flares had been almost unbearable.
So here Is my stupid little list of wishes, compiled to get my frustration under control, and maybe remind you that you’re not alone if you’re hurting too.
I wish I could pop my shoulders out of the sockets like Ms. Potato Head, and replace them with sturdier, less excruciating shoulder joints. They pained me so severely last night, I writhed around trying to get comfortable for several hours instead of sleeping.
I wish it didn’t feel like oyster shuckers have been wedged under my kneecaps, feeling like someone is trying to jimmy them off every day. I wish my hips didn’t roll around and sublux levery dadgum day. I can pop the joint in and out, and it’s not a fun party trick. It’s agony.
I wish I had one of those cool new “exoskeleton” robot suits. Have you seen them?? They hold you together from the OUTSIDE. Like a Transformer. I would t even care that I looked like a weirdo.
I wish people disnt give me the stink-eye when I need to park In handicapped. Look at her, walking Into the store! What people dont realize Is that every step can be a real challenge. You never know what a disabled person is really feeling In their bodies. Sometimes the fatigue makes every step seem Impossible.
I wish people’s understood that different days require different mobility aids. Sometimes you will see me using a cane. I need it for stability on Sundays and or because the pain is making it hard to walk other days. I don’t use it at all and I know that seems really confusing, but it’s quite simple – there are good days and bad days.
I live every day fully aware that I will most likely lose mobility from here on out, so the days I don’t need my cane I revel not needing It.
I wish people understood the fragility of an EDSers body, and the strength It takes to keep going. We are fragile, but unbreakable.
There is little to no stability in my joints because most of my lax connective tissue. Pain and injury are the result. I once broke my ankle in two places from stepping out of bed to go pee in the middle of the night; it just rolled. And lest you think I’m just a big wimp about pain, I walked on that ankle for eleven days before I had it looked at by a doctor. My threshold is very high.
I wish I had a decent immune system. I don’t.
I wish the migraines would cease and desist, but they are tied into some of my other genetic mutation conditions. They are a whole other Issue altogether.
And I wish I were way more zen about pain. It teaches me things, true. But I simply get tired of this shit. I am trying to live transcendently – find joy beyond suffering and camp out In the assurance that God’s got me (and I get by with a LOT of help from my friends.)
I currently have a post-it scrawled with medical appointments I need to make on my kitchen counter. Like I NEED to make these appointments – for specialists, physical therapy, another cortisone shot in my knee, major dental work, a trip to Duke next month for gastroperesis treatment, and labs galore. It had been on the counter for weeks and every day I pass it and get a mini-panic attack, on account of I’m simply overwhelmed.
Because this IS overwhelming. My job is to stay healthy enough to have a quality of life, but I sure could use some PTO days to just NOT feel like this.
Life is challenging, but we are never alone. That’s important to wish for – for God to use my crappy conditions to make others feel less alone. That’s the best reason I can come up with for any kind of suffering.
Words by Jana Greene 