A Little Rough

January:

The days are short,
The sun a spark
Hung thin between
The dark and dark

The rent money: it isn’t here (but thanks to a friend, we’ve got groceries! and – thank you thank you thank you!).

Two cats are sick; yesterdays’ gratis vet appointment fell through due to flood.

An unexpected bill (or two). An overdraft fee. Memories of when that was a lifestyle. Let it go. It’s not that way, today.

This morning: my daughter is diagnosed with asthma. The doctor can tell this is a bit for me to process. So he begins speaking slowly, explaining things in a thorough, calm manner. His kindness and dignity are so moving I feel the sting of tears in my chest.

(outwardly: I am stoic!)

I am ill – a head cold – but I do my job. I do the laundry, and the housework, and I drive a kid or two here and there. My head hurts. But I ask after people. How are they? How is their day?

I drink my water. I feel nausea. I swim in it, for a bit. I breathe deep.

(outwardly: I am stoic!)

Yoga class – a more challenging class than I’d expected. My back is strong – my leg strengthening work has clearly evidenced itself as we move through warrior, side-angle, triangle.

Headstand. I fear the attempt against a wall; I want help. I don’t ask for help. I try it. I bang my head against the wall. Everyone says, “OMG are you okay?!”

(outwardly: I am stoic!)

Lit candles: in awareness for our neighbors who have been affected by, and devastated by, the flood.

The truth is, I do have a pretty good attitude. And days like today it shows. And I need to keep a record so I can treat myself with the kindness I’d wish, in the future, I’d had the sense to enact today.

 A Little Rough

Backstage, JCS

a hand on a hot stove

Backstage, JCS

I get these little sticking points, these moments of non-acceptance. I’m cast from my place of ease and serenity, or at least my finger on the pulse of the dharma – into confusion, a small smudge of despair – rudderless.  Tonight it’s in the car, as we drive to the hospital and my 12 year old daughter hears her mother praying aloud and crying, the helpless cry of abject suffering. Finally pull over at the side of the road – this is at about 9:30 PM – to vomit. Drive up to the ER and check in for pain relief. Pace and pace and breathe – finally on the bench in the lobby, rhythmic humming sounds. Placing myself in a trance to endure.

My daughter knows I won’t die, I’m only in severe pain. She gets to learn what it’s like to offer someone moral support – a loving presence. She puts her hand in mine. I tell her it means so much to me that she’s here.

These days, kidney stones pass about every three weeks. Most are a couple hours of pain – intense, distracting, maddening – but often such that I can walk about and focus on the business of others. Most times the pain eventually eases off – blessedly.

Tonight wasn’t like that. The pain started at about 2:30 and came and went, getting worse. Bringing a nausea that kept me from eating for about eight hours. At seven – right when we’re ready to take the stage for tonight’s performance – it steadily worsened. It took all I had to stay in the show to the end. The memory of getting through each bar of music, each song, each act. I was in a small, fourth-dimension place of a pain so acute the world seemed a Victorian-era vignette, unreal and distantly depersonalized.

I am home now. Exhuasted, but pain-free except for the ache in my lower back.

The hospital was kind. I am fretting about another medical bill. I haven’t yet moved off of that (futile) worry.

Still – today was, somehow, a good day. I kept a glad spirit – or I started off that way and it sustained me. And then: help, from so many quarters. A friend took me out grocery shopping. Another friend bought us our Christmas tree (!) and then delivered an oilskin envelope along with it – folded twenty dollar bills. Another friend sent me an online donation. Another friend let me help her with a home repair project. Another friend hosted my son this evening and took him out to a diner, and played video games with him besides. Another friend asked me along to her lunch. Castmates gave me hugs – castmates who aren’t particularly demonstrative.

If it weren’t for friends, if it weren’t for kindnesses large and small – my life would have little meaning.

And now, exhausted, I am back to pacing myself. Tomorrow: a matinee. I am behind on work for clients. I am tired and will need to recover further.

I can’t figure out tomorrow, today. That is for certain. I am grateful for the help and support I get. May it always remind me how worthwhile it is, to help and support others!

ER

bravery is required

Spring emerges. Skunk cabbage, and newts in the small freshwater streams. Flowers have erupted from the still-cold and seemingly-inhospitable earth. It felt like things weren’t going to change. It was dark. The light is spilling in.

Tonight I flush a pain prescription; yet, afterwards, I feel foolish and uncertain. What I’m really trying to do is stop struggling. The most insane of struggles that I take up, time and time again: fighting my fears.

Stop worrying. I am beginning to think one day I will lose a kidney. Despite my efforts, despite the care of physicians. For a person who has a severe fear of even minor surgical procedures, the concept of something like that is very difficult.

And it feels wasteful to flush drugs I could sell on the street. Yes, I am shocked I even have such a thought, however fleeting. I have never sold drugs and I do not think that is ethical behavior. I know it isn’t legal. And yet the thought occurs because my mind has been overrun with fear. How will I provide for my family, how can we make Rent.

It is the most powerful seduction: there is something I can do, there is an action I can take Right Now, that will sort out my life.

In the car the other day, a beloved friend and I were talking. I said – in gratitude – “God supports me,” and she responded, “Well. I support myself. I provide for myself.” I drove on for a bit and then I said, “There is a lot of suffering in that idea.”

I am going to stop saying “God” when what I mean are the three Jewels: the Buddha, the Dharma, the Sangha. I am shy about Buddhism because where I live it is a minority faith tradition. If you say “God” people might be prejudiced but at least they might not be outright bigoted about it all.

I can be a little bit brave. A little at a time.

the dark wolf

My sleep – fitful. I wake early while Ralph and Phoenix prepare for a long day: she is off on an all-day field trip and Ralph has to have her out at her rural school location by 7:15 in the morning.

But my sleep is poor not due to our slight shift in our morning schedule, but because I was plagued with a nightmare. Very unusual for me. I know the root of this, at least – sort of. I am worried. I am worried for someone I love. It is this gripping kind of fear; nothing abates it, I only get a moment here or there of reprieve. My hands and heart seize.

My worry has not died of neglect yet. Oftentimes, this is the case. But since it hasn’t, I know who I should talk to. So many love me, but many of those don’t have the strength I need right now. I share my feelings and thoughts with my loved ones if it seems appropriate. Something like this, I talk to someone who has a correct view. Who will understand where my heart is and will listen to my troubles – but also give me direction in how to set aside my fear.

I’ve only survived and thrived as much as I have, because I have learned how to take spiritual direction.

Kidney pain, car repairs, and stressful appointments with professionals. The kidney pain is one thing: the worry (about the future), quite another. Relapse into illness brings me to a dark place. I am glad though nothing can slap my gratitude from my mouth.

And, there is much to be grateful for. All the daffodils splashing across the countryside. A wool coat, found on sale – a deep grey and cranberry. Visits from friends. Email messages from those who seek my friendship and counsel. Watching a nature documentary with my son – we are enraptured by the tiny, impossible perfection of the flamboyant cuttlefish. My daughter, sliding into my arms and letting me put my hand on her soft belly.

My new phone! And: Ralph’s new phone. He didn’t think I’d buy him one, but I let him choose exactly the one he wanted, and then I bought him a case for it as well.

Taking care of myself, and my family, as best I can.

i’m sorry i haven’t written much of late, but:

I am experiencing high call volume.

And by that I mean, a double-dose of kidney problems. That’s right. BOTH kidneys.

 

I laugh (and I post a clip from one of the best movies of all time, and before I die there is nothing I’d like more than to star in a stage adaptation), but the truth is this has been most discouraging. I don’t know how I got through Sunday night and Monday, but by Tuesday night I had capitulated and taken some prescribed, and narcotic, pain medicine. I take the medicine at night which means I feel pain, nausea, and awfulness during the day. But taking the medicine during the day would mean doing nothing during the day. I have at the very least to drive and pick up my daughter from school.

It isn’t like my kidneys to take this long to pass stones, and it isn’t like them to both be seizing at the same time. I can wait a while longer but then another CAT scan or xray, and possibly another procedure, may be in my future. Expense, radiation, needles, fear, vomiting, invasion – and my husband, doing more than his share while I recover.

I will write more soon; promise. Thank you for your patience.

“infinitely flexible and constantly amazed”; gifts of Illness

I have a journal that, the way it works, when you’re writing in this year’s entries you see those from the year before. Today I had a moment of discouragement when I saw I’d recorded “lots of kidney pain” – and that I had written the same thing a year ago. By the way, my brain works okay so I know that as years unfold this may be a regular part of my life and years may stack up of “lots of kidney pain” – so this is, in its way, just the beginning of my path of Acceptance.

Now, (conscious contact with one’s) chronic pain has been, for me, quite a spiritual experience and a game-changer in so many ways. But this post isn’t about pain – or even the attendant nausea and fatigue. This post is about loosening my death grip on Knowing The Story, or Having Things Figured Out.

I got sober in May 2011 and a few months after that I began to be plagued with severe kidney pain, as bad as the first time I had it so many years ago. In fall 2011 I remember sitting and sweating through my job chairing a Recovery meeting at a treatment center and then calmly, shakily, driving myself to the ER and throwing up. Now as I began to seek treatment for my kidneys – again – the treatment became ongoing, not just a visit here and there. At first a few sober friends told me that perhaps my drinking and my kidney troubles were related; my drinking had made my kidneys ill (causation). I asked my nephrologist/specialist about that, and he waved the theory away. He is a kind of hilariously handsome guy (to me anyway), all wearing a white lab coat with impeccable manners and a slightly aloof disposition. And now he tells me I was born this way (meaning I was born with a kidney illness – Renal Tubular Acidosis Type II).

This didn’t make sense to me for a while – I comprehended what he was telling me, but my heart told me something else. I kept trying to find ways to blame myself for my kidney problems! And you know over the months I asked him a couple more times if I’d caused this condition, and specifically why it is these severe bouts of pain were flaring up now that I was sober. He kept saying: you didn’t cause shit, and your sobriety is a total coincidence, nothing to do with the other.

I’m not sure he’s right that the whole thing was coincidental.

My first horrific kidney stone pain was at age sixteen. Since we didn’t know what was happening, it scared my father and I very much the morning of onset (my father vomited from anxiety before he took me to the ER!). Once we figured out what it was I felt this relief I wasn’t going to die soon. I got a prescription for Vicodin, and soon after this it seemed the stone had passed. I don’t remember using the Vicodin very much and I certainly didn’t get hooked on it – like so many others I’ve now had occasion to meet. But here’s what’s odd: after a bit of trouble at age sixteen, I was mostly (not completely) asymptomatic, as far as I can tell, the exact number of years I drank.

People today ask me if I’m in pain and because I’m in chronic pain and I do not use narcotics or painkillers I can no longer answer “yes” or no because I simply do not know. I used to say “No” when I wasn’t in a lot of pain. But I am beginning to realize I am in pain if I’m awake (I hope my body finds respite while it sleeps). Sometimes it is in my conscious awareness and sometimes it is not. To be honest, I think it is almost better when I am consciously aware of my pain (that is, when it is quite severe), because that keeps me in the moment and keeps me knowing exactly what I’m supposed to do (breathe deep, pace, vomit, pray, stuff like that). The daily and by-rote experience of what I would call very low-level pain, I deal less well with. I am apt to feel discouraged that I am fatigued (hello! I am sick!), or I feel irritated I’m nauseated (hello! I am alive! Isn’t that something to be grateful for?), or succumb to anxiety and depression and start thinking What Am I Doing Wrong? (that’s just… dumb. But, I do it).

I am not thrilled I am in pain, but I am not angry about it and I don’t feel Special Snowflake about it, either. Pain is part of Life and everyone has pain. I am grateful to start being honest about my pain – that’s new for me, historically. Re-joining the human race and knowing that A. my pain is real but B. I am not Special has been very helpful and has restored a bit of humor. Sometimes when a situation hurts, I find the most help in laughing about it! It’s just my Life, no big deal. Like I like to say, in a Buddhist mantra close to my heart:

Two Tears in a Bucket /
Motherfuck it

I guess what I’m thinking is, if I don’t know my own story I shouldn’t speculate on others’. I never know why or how someone medicates and with exactly what substances or processes they are medicating with. When I see someone behaving poorly or even in a scary way I like to reflect that they are doing their best with what they have. This gives me a lot of peace and keeps me flexible and compassionate. And truth be told – excited! There is a lot I don’t know.

Did I drink to medicate chronic pain (along with whatever emotional pains I felt)? Who knows. Today I know that is a possibility, and the fact I suffered under an illness for years without properly caring for myself makes me sad. The possibility I developed another illness – alcoholism – as a result of improperly caring for myself – is a very interesting one! When I think that this is a possibility, I have a lot more compassion for the woman who went through this. She has been through a lot! She should take it easy, take a break.

I don’t know why I am alcoholic, or how I became one. I don’t know why my kidneys are busted. I’m okay not knowing, today. I am no longer as attached to my self-stories as I used to be – which ultimately means I am no longer attached to figuring out your story either –

and that maybe, just maybe, I can actually be here for you. And for me.

what’s that i’m looking for, oh right it’s Dignity

I’m prone on the table and a technician fiddles with me, fiddles with the machine, talks me through the procedure which is a simple and painless one. The vast number of medical practitioners I’ve worked with in my life have been so very kind. He prods my hip and touches my body here and there in a direct, firm yet kind manner, apologizing for any discomfort I feel. Practitioners are often so gentle with their hands I almost want to cry. How they can handle hundreds if not thousands of bodies but be so circumspect as if you were their only patient today, or Ever. It is a really beautiful thing.

Tomorrow I find out more about further interventions for my condition. I am expecting some not-so-awesome news. Someone dear to me the other day said, Well at least you don’t have to go through such-and-such. I’ve found “at least” comments very unsupportive and very unhelpful (I heard them from friends and family after miscarriage, after being beaten, et cetera) – especially from those who haven’t gone through these difficulties, these illnesses.

And then there are those who keep saying, Hope you get better. It’s a wonderful wish, but I notice it is also delivered, often, by people who have forgotten what I told them last time they asked. I have a chronic condition from birth so… getting better? It may never happen. It seems like many people keep someone chronically ill at a mental and emotional distance; they aren’t willing to engage with the illness, nor take the time to remember where their friend or family member might be coming from. (It only takes a moment, when you see them take a breath and reflect – promise! It’s good for you!) Anyway, I very likely will not get better. It’s like my friend S. who just lost the use of her legs. Those fuckers are gone, there are no more legs, and that is a hell of a thing to get used to no matter your age or what you’ve been through. She is not to be pitied or Othered but to be fully engaged with and to be respected – because she is a living, breathing human being going through The Shit.

Despite this and half a dozen other unplanned events (my dog went to the doggie ER today and we got to get a new credit card to cover that) I am surprisingly well. Gratitude practice, gratitude practice – helping others. Volunteer work. Sorting and rinsing beans and washing dishes and picking up fresh produce for the kids and dropping donations off at the Salvation Army.

No matter what and if we can’t afford food I still get flowers for my shrine every Monday. This practice has become very grounding. I spent much of my life being wrapped up in my own problems and I couldn’t be there for other people, but today I know most time I can be there for others. It just takes mindfulness and patience and persistence. I can’t do much but I can do a little.

lead into gold, weariness into ecstasy, bodies into souls, the darkness into God

Today was my husband’s 36th birthday. I was thinking this afternoon that our marriage is an extraordinary one. You know those vows, “in sickness and in health”? I realized today Ralph and I have spent almost all our fifteen years together in sickness. With my recent reflections on my kidney illness, it doesn’t look like any time soon we’ll be in a “health” phase, either.

But our relationship has matured into something quite wonderful and very strong, and something I treasure very much. Respect is easy to promise or even to give when you’ve not gone through Hell together. Respect, love and devotion after we’ve been through is the most precious alchemy.

Today the four of us drive to Montesano for lunch at one of our favorite restaurants. Nels complains about a gift winging its way to him in the mail, and I give into my irritation with his ingratitude. “With that bad attitude, you’ll probably make bad things happen to you,” I tell him tartly. He replies serenely, “That concept is called ‘karma’. Which doesn’t really exist.”

And I calmly turn my head and looked out the passenger-side window and laugh silently. He won that argument, although no matter what he believes I’m not sure if there’s anything I have more respect for than karma.

Something changes in the car and soon we are all restored to good spirits. We discuss names and name-changes, and Nels announces his plans for a new name. When he clarifies the spelling I am quite impressed: Aqua Sun – as in, Aqua Sun Hogaboom. Which suits him, if you know him. Now I don’t think he is serious about the name change – unlike his sister three years ago – but I do think I love that name so much, and I love the thought of the responses I’d get calling him that in public.

As I write, this same child is singing to his father and brings him some homemade sweets. “That’s a lot of jam,” I hear my husband observe mildly. Nels proudly brings me this impressive concoction in a bifurcated cupcake dish: a ripe plum sliced perfectly into a Pac Man presentation, a cloth napkin and fork, and a “jam cake” garnished with fruit and a large swath of glitter-frosting. By “jam cake” I do not mean something baked, it is literally what looks like a quarter-cup of preserves. (“It’s only one scoop!” he says cheerfully after his father demurral).

Nels likes to cook.

little snagglepaw with her sad whiskers

Two days ago I began to worry for the health of our little kitty Hammy; yesterday I was down for the count for several hours with severe kidney pain. Today as I recovered, my daughter’s earache got bad enough she began sobbing from pain. Missing a car – it is in the shop for an unexpected repair – I was fortunate enough to get my mom’s van to take Phee up to the ER.

It’s been a rough couple of days.

I am in a place that instead of being anxious we are racking up an ER bill I can be grateful we have access to medical care. I am glad I know my kidney pain is not a serious health condition, it is merely severe pain. I am appreciative of friends who’ve sent loving emails, tweets, and texts about my kitty, and for a friend who offered to let us use her vet credit balance so we could take Hammy in. Little Hamilton seems to be getting better as we bought some high-protein high-calorie food and have been carefully feeding her small doses every couple hours (she won’t eat her regular dry grain-free food).

Phoenix is on medication and feeling better.

Despite my experience of gratitude and support, I am a little down. I thought I’d be honest about that here and in other public spaces.

Thank you, again, to the friends who’ve been so loving and supportive.

i’ll take, “confusing and upsetting birth defects” for $500, alex

“People who have kidney stones often report the sudden onset of excruciating, cramping pain in their low back and/or side, groin, or abdomen. Changes in body position do not relieve this pain. The abdominal, groin, and/or back pain typically waxes and wanes in severity, characteristic of colicky pain (the pain is sometimes referred to as renal colic). It may be so severe that it is often accompanied by nausea and vomiting. The pain has been described by many as the worst pain of their lives, even worse than the pain of childbirth or broken bones. “

The hot bath helped only a little, but now overwhelmed with pain I lean over and throw up violently into the draining tub. And again. And again. Aware I might not have an appetite for the meal I’m rejecting. It smells foul but not as bad as the benign and delicious confectionery I’d smelled a few minutes before, just as I felt myself getting violently ill and when the nausea began. Vomiting is constructive and briefly supersedes the pain. Sick, dizzy, and in breathtaking pain, now, all my evening plans dashed. For the moment. I ask my daughter to bring me a towel and I wrap myself up and lie on the couch and pray.

I never know when I’m going to have just a little ache, a distraction that leaves me slightly breathless, or whether soon I’ll be sweating and my blood pressure up and then, vomiting. The vomiting at least relieves the nausea, or so it seems. Sadly I’m watching my pain meds leave my body, not that they make enough of a dent to make it all go away, but they help a bit.

It goes on and on for seemingly forever, but it’s only about two and a half hours of horror.

A friend gave me a book today and when finally the pain eases of to being only minorly-distracting I can read. Gratefully. Then, get dressed. Slowly. I remain on the couch and finish this good book; Hutch pads over and lets me give him good scritchinz. Ralph and the kids take him for a walk as I am too sick, already thinking of earlier today when I took my dog on his first off-leash walk, which was awesome, and I was irritated I didn’t have sunglasses, but I didn’t think I’d be going through this crap tonight.

“It has been said that kidney stones are the worst pain imaginable.” You know I’ve been through labor pain and I’d rather do that. At least with labor pain you get a break. And as my daughter reminds me, “you get a baby too.”

By the way I hope a reader can send me a graphic old-timey rendition of kidney stones, like my old favorite, “the gout”. Maybe you have to go through it to understand.

Another day, and hoping for a night where I don’t wake up gasping in pain.