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.)
Well, it’s been two months since The Diagnosis darkened my door.
The Diagnosis is capitalized, in case you’re wondering, because it’s a proper noun. A name. An entity. An alternative to the “C” word, cancer. Just now, I am still grieving the loss of one of my dearest friends to cancer. People I love very much are fighting it right this minute.
In the last ten months, it has come to call in ways far too intimate for my liking. And I guess I’m mad about it. Because yesterday, I went to therapy. I needed it. I always need it.
The session went well, and I even boasted that I have accepted it now, as if accepting something like that is a one-time deal. Like a harvest moon in eclipse. Or getting “saved” at church.
I should have known better, given my spiritual history. Because once was not enough saving for me at church, and I’d go up to the altar every time there was a call. Week after week, I would try to resolve that tiny piece of doubting, stuck in my soul like a piece of spinach you can’t get out of your teeth after lunch. I was a junkie for getting saved, even though they kept telling me it was a one-time event, no necessary to repeat at every tent revival.
And I suppose there is one tiny piece of me still that vacillates between Ascended Zen Master (as if!), Grandmother Willow-level wisdom (again, ha!), weeping Victorian mourner (I am faint with the swooning!), and crazed badger.
Because I rage-cleaned my shower yesterday, after an already full day of getting things done, after a day that my body implored me to wrap it up already. I decided that I could scrub the entire shower, even though I nearly dislocated my shoulder by putting on my seat belt earlier. Wise Grandmother Willow I am not. And this after telling my therapist (and believing it,) that I’m handling The Diagnosis well now, it’s old hat. Just another chronic condition to manage. That old chestnut! It’s fine. I’m fine. I’m fine. Anger is in the rear-view mirror, I guess! Bye, Felicia! Fast forward a couple of hours; I am home alone with my feelings.
Could a cancer patient do THIS?? *scrub* *scrub* *scrub* for a solid hour. The answer is yes, she can. But she really shouldn’t. At some point, I started crying without realizing it. I was literally awash in water, soap, tears, and snot. Out, damn spot!
The question is: Could a cancer patient do rest? With multiple chronic conditions and zero Zen Master skills? Can she listen to her body without shutting it down for being too high maintenance?
Can she, without constantly cracking a joke about it, let anger have its say about this? Anger, my least favorite of all emotions; the one I suck at expressing the most? Can I accept that it’s a little like getting saved – you think you are, but what about this sin or that that I may have committed? I’d better make sure. And I reckon The Diagnosis deserves the same courtesy of expression that I believed would keep me from burning for all eternity. Oh, you thought you were saved? Better make sure.
Oh, you thought you were done being angry? BETTER MAKE SURE. Better scream into a pillow again. Better listen to some gangsta rap to calm down. Better pray, step up to the altar – that place in myself where God has taken up residence. I don’t have to go far to encounter him.
Better not deny those feelings, because they have every right to be here. The Diagnosis invited them. Maybe I have to entertain them in order to usher them out? I don’t know. I’ve never done any of this before, and like most things my neurosis tries to sell me, I feel like I’m doing it wrong.
But at least my shower is squeaky clean.
Blessed be, friends. Thanks for following my journey.
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.
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.
I had horrible night sweats last night. Nothing like waking up pained and feeling like you wet the whole bed (I did not, just sweat.) So, I woke up to change my PJs and my sheets and couldn’t manage to go back to sleep. That was the 2-4 a.m. hustle, even before the sun was up.
It reminded me of getting up with my babies when they were little. I would change their diapers and onesies and change their sheets if they had leaked a little. I would calm them with kind, soft words, and cradle them to my breasts for a little feeding. Whatever discomfort they had was soothed. Whatever tiny human need they had was met. Thirst, hunger, general fussiness – all of it within my ability to “fix.”
Then I remember endless nights when they had colic, and I was sleep-deprived and unable to make them feel better instantly. And on those nights, walking the floor, jiggling a fussy baby, I sometimes cried too, right along with them. Little did I know I would cry right along with them all their lives, when colic was replaced by the struggles of growing up.
I didn’t consider that they would develop needs I was helpless to aid in the future, and I certainly didn’t think about my own needs; the ones I would also be unable to manage. I just lived right there in the moment. I’ve been trying to get back to that mindset ever since.
It makes me want to cry now that I cannot soothe myself on mornings like this. I can’t fix leukemia.
I can change my sheets and tell myself kind, soft words, and cradle myself in a hug, even as I am drenched with sweat. I cannot seem to get enough rest, even though I may still have ten or twenty years – CLL is “the leukemia you want to have, if you have to have leukemia.”
But here’s the thing…I do not want to have it at all, please and thank you. It’s kind of the shitty icing on a shitty cake, as I was already battling a myriad of chronic conditions. I cannot imagine what things will be like as this thing progresses over the years. Ten to twenty years of endless night sweats and crippling fatigue? Gee. Thanks, I guess? I’m such a grateful person, in general. So, this journey has got me in all of my feels. Can gratitude and frustration exist at the same time? Lord yes, friend.
In the meantime, I will try to keep my PJs dry and my attitude from tanking, because on days like this, I just want to fahgettaboutit. But I cannot just fahgettaboutit, because I have people who love me, dammit. They still depend on me for less sophomoric troubles. And I have such a wonderful circle of support; people who soothe me like a colicky baby when I want to give up. They know they can’t “fix” it, and I appreciate their trying anyway.
I know this piece would leave one to believe I’m a bitcher and a moaner. But see, I’m also a fighter, even as I cannot feel rested, and I’m flummoxed by the unknown. So, like a one-year-old learning to walk, I put one unsteady foot in front of the other, garnering self-praise when I teeter without falling, and crying when I do fall.
And in this 2-4 a.m. hustle, I will soothe myself and accept the soothing from others, and hopefully grow in the interim, just like a child, y’all. Because just like our children did under our watch, we are all still growing up. And we all live right in the moment, whether we like it or not.
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.
Well, Dear Reader, things are trucking right along. A few days ago, I went to the hospital for my bone marrow biopsy – which was not quite as bad as it sounds.Almost, but not quite. Definitely no fun whatsoever, but as it turns out, I’m tougher than I’ve given myself credit for all these years. I straight-up felt like a badass, if that badass was scared shitless and masking the hell out of it, so as not to upset those around me worried about me.
And I don’t know how NOT to do that – mask for the sake of everyone around me. I can’t upset my husband. He is literally the best thing that has ever happened to me – my heart. I have to be brave for my daughters. They are processing in their own ways. And my readers – most of whom followed me from The Beggars Bakery – have watched me amass almost 24 years alcohol-free and they watch my recovery.
In recovery circles, you become very aware that people are watching you, seeing how you handle adversity and whatnot. I took on that mantle like a good People Pleaser, each year giving my testimony – every year, louder cheering when I would pick up my annual chip, but I hated the public speaking and fought nerves every meeting I ever shared at.
Frankly, I am cheering myself right now for staying sober, because F*CK! This is really hard.
But I’m kind of watching myself, being critical in a way I never was with anyone else’s tender heart, and why do I do that? Do better. Be more positive. God has a plan. Yadda yadda. Ugh. Beating myself over the head with toxic positivity because I know how to be toxically positive and laugh at every situation, but I don’t know how to do THIS.
Am I tough, or am I masking? Am I brave, or am I am I pretending? After all the scans and biopsies and scary medical stuff, I feel tougher. But I also feel rawer, tender in parts of my spirit – the pure and the shadowy – I didn’t know existed.
I was alright until I shuffled into the CAT scan room, so that they could guide the needle through my hip bone, into my marrow, suck out some of it, and punch a little piece of bone for biopsy as well. Because of a series of unfortunate events, I was by myself. Also I didn’t think anyone would be allowed back with me, but the waiting room had another waiting room someone could have been there in with me. But no. Just me and my thoughts, avalanching into numbness.
The team of three taking care of me were amazing – I could not have asked for gentler, more calming medical professionals – tried to put me at ease. But when I looked around, I saw the implements of the procedure, and had an internal freak-out. All I could think of was the Showtime series “Dexter,” which my husband and I LOVE and are currently bingeing. Drills! Sharp things! Syringes! Lord, Dexter would LOVE this set-up! I laugh to myself, then realize I’m just deflecting with humor again, a skill I hones early. Not that Dexter is funny – it’s just the lengths my brain will go to avoid feeling fear is ridiculous. I fought the fear to jump off the table and run…as if the joints in my legs would let me run further than the door.
“Okay, we are inserting the needle,” said the radiologist (forgive me if I mess up on the official job titles. I have seen a dizzying array of medical professionals in the past three weeks and it’s hard to keep them straight.) They had numbed me with lidocaine and put a little somethin-somethin’ in my IV for the pain. I could still feel it to some degree; I am very difficult to anesthetize. I feel EVERYTHING, mind, body, and soul.
The kindly PA explained that they were entered the bone. What a strange, awful sensation. Needles don’t belong there. But by the same token, I am so grateful that science allows them to help me in every way they can, and I say a quick praise for them. Then they said they were taking the marrow now “….almost there, almost there, almosttttt….” and I yelped because I could feel pain and pulling. Next was the bone punch. Mother of GOD.
Go to your happy place, I said to myself….that little house in Wimberley, Texas, with a stream out back as clear as bathwater, and full of little fishes. The grass is damp and glossy because it’s morning. There are bluebonnets, of course. And I see a sly little water moccasin swimming upstream a bit. I am not scared at all, just give him a nod as he slithers on his merry way – he belongs here too.We ALL belong, in my happy place. Van Morrison is playing in the little house up the hill. I am eating s bowl of Blue Bell Banana Puddin’ ice cream, while I dangle my bare toes in the clear water. Ahhh, so cool. It smells like Texas here. It smells like home. It is beautiful weather, not at all hot. And the creek is making tinkle noises, and I look up to see my husband, smiling, and…
“You’re a rock star!” the Tech said, bringing me back.
“You did SO good!” “You’re so BRAVE.” “Treat yourself to something special today!”
These are all things I said to my kids when I was potty-training them, and with the same inflection. And I was not mad about it, nor did I feel patronized. Dammit, I received every kudo. Talk sweet to me. Tell me I did a good job. (A sticker on my forehead, please?) Every comforting word was exactly what I needed to hear as a scared little girl whose screams went unanswered.
In case you are wondering, I did treat myself to something following my marrow biopsy. Something decadent and extravagant. Something I have been denying myself forever, because GOSH DAMN, it’s so expensive. It costed me much, but rewarded me more.
I had myself a big old cry. I let myself be sad about all this. I didn’t tell myself to get it together. Me alone with my thoughts – we all cried. And then we felt a little better. Until we felt sad again. And then hopeful. And then just raw. But it’s okay, not everything needs to be anesthetized. Maybe I can even cheer for a myself, for a change. Atta girl! This is still my “testimony,” and we shall see how I handle adversity and whatnot. I suspect it will be a mixed bag.
This is hard. Writing helps. Thank you for sharing this journey with me.
Three weeks ago, I received my diagnosis of chronic lymphocytic leukemia. It’s been a weird time, to say the least. I still can’t believe I am typing the word cancer as relates to myself, because I’ve often thought, gee….I have a lot of medical problems but at least it’s not cancer!
And life – for the thousandth time – said THAT’S WHAT YOU THINK!
A few surprising things are resulting from my utter shock. For the first week, I don’t think I used the “C” word (no not that one, don’t be gross.) I called it “the illness.” Sick.” But I am finding that calling it out by name – cancer – takes just the tiniest, miniscule crumb of scariness out of it, even though I’ve seen what it can do and have respect for the illness. Acknowledging the name of the thing you’re fighting helps the fight-iness, I think. I am not apt to tolerate elephants in living rooms anymore, but face it and comfort it, if need be. But see it…really see it.
A dear friend of mine told me yesterday to stop calling it “my” cancer. “It’s OUR cancer,” she said, which made my eyes well up. I don’t want to bring my friends and family infirmary and sadness. I want to bring them joy and laughter. Alas, like everything else in life, it’s not “or” but “and.” It isn’t joy OR sadness. It is both, and there is nothing I can do about that.
So even though this is completely out of my control – as are all of my conditions – I’m trying to temper the rushing guilt of bringing everyone down that comes in waves. Our sweet tribe – our closest of friends – lost someone to cancer, only seven short months ago. We are family, in all the most genuine of ways. We are all still reeling and broken, trying to figure out how to live in a world she no longer inhabits physically. (Notice I said “physically.” I feel her spirit every single day, and I know she comforts and encourages me now.) Hers was “our” cancer too. Because none of us live in a vacuum, nor would we want to. It was an honor for her to let us walk her home. I hope I am half as brave, ballsy, and beautiful as she, in coping with this journey.
Perhaps this is not a wilderness experience. Maybe it’s not survival-“Naked and Afraid”-style – when one person has tapped out, and the lone contestant braves the wild. Truthfully, there are traumatized parts of me – parts left of the little girl in me left to fend for herself when I was helpless – that is fighting the urge to run. Run where, I do not know. I’m not a runner. But if I disappeared into the ethers, just *POOF!* it would not make anything easier for the people who love me. It’s a dumb thought born of “flee, fight, fawn,” which I very much needed to hone as a child but does not serve me now.
But I surely do feel Naked and Afraid – raw, vulnerable, exposed, frightened. All of it tinged with guilt about dragging other contestants into a jungle they didn’t even sign up to brave.
If you’ve ever watched the Discovery Channel show, the participants are supposed to be given ONE item to help us survive. A machete. A tin cup. A fishing hook. SOMETHING.
WHERE IS OUR ONE ITEM, FOR CRIPE’S SAKE??
And then it comes to me – we are equipped. With just one survival item – it’s all we get.
Love.
See, the undamaged parts of me have a knowing – we are given one item, and only one that matters. It’s not a weapon. It cannot be stolen, used against us, or bartered.
Love keeps me from tapping out. Love keeps me from running. And love will be the key to my survival – to OUR survival. It’s all we take with us. It’s all we are born with and die with. It is everything.
The Hubs and I went for a little adventure in Southport the other day. We made a whole day of exploring after a lovely ferry ride across the choppy Cape Fear River. Well, we made half a day out of it anyway.
By: JANA GREENE
Nobody talks about what it’s like the first week after a cancer diagnosis. You’ve been leveled, and you know you have a “long road ahead, “but that road is a raging river so far as you can tell. The same day I received my CLL diagnosis, I was also diagnosed with a basal skin cancer on my leg. What are the odds? Two cancers in one day? I never half-ass anything!
Instinctually, you want to lay in bed and lament your fate, with weeping and probably gnashing of teeth, but you have things you want to do. And none of us have the time we think we do, so I’m trying to do the things. Like get out of bed. Like brush my hair. Like meditate until my mind quiets. Sorrow rolls like sea billows, a Nor’easterI didn’t know was coming. But I also have times of peace like a river, attending my way. There is no manual for this. I don’t really know how to feel most of the time.
I was having a good day and we were down for an adventure, so the Hubs and I spent some time in Southport. We even took the ferry across the Cape Fear River. Ferry rides are always fun.
One of the places we visited is the Maritime Museum. It has all the usual small-town museum kitch – displays about pirate life, a few real buttons from the Queen Anne’s Revenge (Blackbeard’s sunken ship.) Displays about hurricanes that have come ashore here. An “interactive” fishing exhibit. That kind of thing.
But what stopped me in my tracks was a display featuring little porcelain figurines of sailors trying to row themselves out of Hurricane- whipped seas. Every crest of the ocean higher than the last, roiling waters with no safe harbor in sight. And this little sculpture spoke to me. It reminded me right away of my favorite old hymn – “It is Well With my Soul,” by Horatio Spafford.
You see, Spafford wrote the hymn after several traumatic events leveled him. He had been a successful attorney and real estate investor who lost a fortune in the great Chicago fire of 1871. Around the same time, his beloved four-year-old son died of scarlet fever.1n 1873, hit by the economic downturn, he planned to travel to England with his family. He sent his wife Anna and four daughters ahead on the SS Ville du Havre, a French ocean liner, while he finished up business. He planned to follow in a few days’ time. While crossing the Atlantic Ocean, the ship was involved in a terrible collision and sunk. More than 200 people lost their lives, including all four of Horatio Spafford’s precious daughters. His wife, Anna, survived the tragedy. Upon arriving in England, she sent a telegram to her husband that began: “Saved alone. What shall I do?”
My grandfather had loved the sea, though he was never a sailor. And he had his own struggles, as we all do. He met up every day with depression, but he also had this bright light – like the bulb in a lighthouse. He showed me the way many times. I remember watching him paint a great Cutty Sark ship. His oil paintings of oceans were always depicted with rough waters, and he spared none of the turquoise, deep blues, and crests of white foam to get the point across – chaos is the nature of this world. Rough seas ahead!
Some might think his paintings were of angry seas. But to me as a child, surrounded by the smell of turpentine and admiration for my Papa, it looked happy enough to me – like riding riding the tilt-a-whirl at the state fair. A busy, alive sea…. WHEEEE!
My creative Papa was also a choir director, and when I’d tag along to his practices, he would often choose the old hymn. It is actually a horrible story to tell a little kid. I’m not sure I would have told that story to a four-year old, but it was a different time. I definitely never forgot the song and its meaning.
It means, “Shit happens, kid. Things will occur in your life that an earlier version of you would have sworn would kill you. Hoist the sails. If you don’t have sails, trust the wind. If you can’t trust the wind, trust God. Because tragedy is inevitable, and saved alone, what shall we do?”
Ah, but we are not rowing alone, and we are not saved alone. We are saved by a God who knows we will get roughed up a little and saved by each other – crewmates. Keep rowing over the roiling seas, and I will too. I’m grateful a little plastic sea featuring sailors in danger reminded me to trust God in a small-town museum in the middle of a crisis.
Horatio Spafford had to go through hell in order to create something that has brought untold millions hope and strength.
I have complained to the manager (God) about this protocol, that in order to bring hope, you have to walk through despair. Doesn’t seem like a good business plan but what do I know? He is the Captain, and I am not. Whatever my lot, he has taught me to say, it is well. It is well with my soul. (Today anyway, which is the only day all of us know we have.)
“And Lord, haste the day with the faith shall be sight; it is well, it is well with my soul.” I pray it is well with yours, no matter the seas.
Words by Jana Greene 