Tag Archives: mental illness

I’ll Sleep When I’m Dead

what price, facing the wreckage of my past…

After becoming a mother in my late twenties, I zealously guarded my sleep privileges. When my children were older, I heard several variations of this thought: why waste time sleeping when there was so much living to get to? I was deeply offended. Sleeping late, long, luxuriously, was my reward for hard work and stress and parenting.

Several years before my cancer diagnosis (although the cancer was already hard at work in its own indolent way), I began having terrifying episodes of insomnia. They seemed to be connected to the heart trouble I developed in 2006. I would wake up in the wee hours with immobilizing chest pains. I slept alone; Doug and I were separated for years before he actually moved out of the house. So the pain would wake me and I would begin a vigil of fear and shame.

These days, I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should.

The fear was that I was actually dying of a heart attack. I have a very mild case of congestive heart failure and a very active imagination. The pain was transfixing – literally pinning me into the bed while I struggled to breathe and slow my heart rate. The shame remains more difficult to speak about. But isn’t that the bondage of shame, anyway? The inability to speak it aloud?

I was ashamed that I would be found out as a fraud. That I was not really sick, that I had somehow manufactured the experience of pain. I was deeply ashamed that somehow, my mind had tricked my body into feeling symptoms. I felt shame that I might be, however inadvertently, taking more than my fair share of attention, of medical care, of health insurance benefits. I felt such deep shame I even made up a little rule for myself: no more than one ER visit per year for chest pain.

Seeing my marvelous cardiologist every 9-12 months, as she recommended, we spent a lot of time talking about those chest pains and my fears. She ordered tests, changed up my meds. But the chest pains kept recurring, and I kept spending those wee hours of the morning, two or three times a month, in a fug of shame and pain. Insomnia plus a crippling fear of impending death plus shame is a potent and no doubt toxic mix.

Along with the initial cancer diagnosis in August 2017, I was told I have ulcers. In the flurry of consternation about pancreatic cancer, somebody prescribed me the generic equivalent of the little purple pill, and I’m happy to report I have had not a single episode of that particular insomnia since. I also learned that if you think you’re having a heart attack, you can get up and move around. If the pain lessens or changes, it’s probably not your heart.

Since the diagnosis of metastatic neuroendocrine cancer was confirmed in January, I have been experiencing several new kinds of insomnia. Unfortunately, most of them are related to pain. There’s the snakes in my belly that were the early harbinger of the cancer. There’s a pain in my upper back that I really think is my poor old liver quivering from repeated insult.

There’s an ache in my heart that sometimes flips into rage when my powerlessness crosses the threshold of my awareness. The post-surgical hernia, despite my best efforts, has grown as big as my left tit and is quite a bit more firm. It hurts if I do too much. These past few weeks I’ve had a constant headache and feel like throwing up most of the time, and all of these aches and pains are amplified after midnight.

So I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should. But the idea that sleep is something I’m entitled to doesn’t hold water anymore. I’ve had an important revelation:

I really was sick, all those nights I thought I was dying. In spite of my first-class health insurance, in spite of my faithful adherence to Western medicine, its skewed values and narrow perspectives, in spite of a fine education and my white skin and my privilege and my clenched-teeth determination to wrest what I want out of life, that system missed a simple case of ulcers, then misdiagnosed cancer as an emotional problem. Complicated my recovery with poor post-surgical care and then, again, misdirected my pain and channelled my shame to work against me.

My pain is real and my shame is unnecessary. In fact, millions of women just like me, throughout history, suppress their pain, or report their pain and are ignored, minimized, shamed for listening to their bodies and reaching out for help and health. So it’s okay to stay awake during these wee hours. Maybe even necessary. Because there is somebody else out there, struggling with pain and shame and fear. I’ll sleep when I’m dead. Tonight, I’m with you.

Good Book Upstairs, Big Book Downstairs

The tension between writing what interests me and writing what makes money has been a constant in my career. I’m delighted to report that my decision to write about recovery has resulted in my first publication in a national, glossy print magazine. Thanks be to God!

I picked out the photos, too. (Boasting now)

Take a look, I’m proud of it:

upstairs-downtstairs

Stinky and the Pain

“What’re we going to do tonight, Brain?”

“Same thing we always do, Pinky…try and take over the world!”

–Two lab rats from Warner Brothers’ “Animaniacs” circa 1995

When the cancer first began to make itself evident, I called it the “snakes in my belly.” At random, my gut would begin to rumble and roar, and I imagined I could feel the coils of my intestines slowly turn and twist. It was not painful, just kind of amusing, once I figured out the snakes weren’t usually followed by any other, more rude gastric events. The snakes are still with me, loud enough to be heard over a movie soundtrack in a surround-sound theatre, just today. But I kind of like snakes. They exude calm and warmth and an unmistakable physical presence.

The most obvious symptom of my pancreatic cancer (a rare type, slower-growing than its more notorious, ductal-type kin) was awful diarrhea. The uncontrollable kind, the kind of problem babies and old folks have. And I was lucky to have it. Yes, that’s right. Luckily, when the cancer cells left my pancreas, they drifted over to my liver, not my lungs or my brain or anywhere else. This type of pancreatic cancer is rarely found out in time for surgery or other treatment unless it goes to the liver and causes diarrhea and pain first. Thank you, Jesus? That verdict is still out.

Occasional sessions of raging, cramping, running-down-my-leg nastiness started coming weekly, then daily, leaving me weak and trembling and in tears. The worst spells were predictable, coming at four am like clockwork and often lasting for hours. During the day, more and more frequently over this two year stretch before my diagnosis, I would have unexpected attacks of diarrhea and I started feeling like I always, somehow, smelled like shit.

I started wearing diapers, a huge concession. It’s ridiculous, how much I let that crush my spirits. I imagined everyone could hear the sound of the paper diaper rustling and it got harder and harder to leave the house. I didn’t ignore my body while all this was going on. I went to my primary care doc-in-the-box, who referred me to a GI guy. I’d had my 50-year inaugural colonoscopy a year before and I scheduled another one, did the prep, showed up on time, followed the directions, listened to the doctor.

“Irritable bowel syndrome,” was the verdict. The GI guy had a most irritating habit of not looking me in the eye. Nothing inappropriate, I think he kept his eyes on his fingers or something. I can’t imagine a career of looking at people’s assholes. Maybe it’s hard to meet people’s eyes when their ass seems the better part. There’s really nothing to do about it, he told his hands. You just need to manage your anxiety.

I glibly assured him there is most certainly something I can do about it. I could, and would, double my daily meditation time. And I did. It probably saved my life. But it didn’t help the diarrhea. I did a couple of exclusion-type diets, to determine if I was inadvertently poisoning myself with Taco Bell or glutens or something. I tried more exercise, I took immodium, I yo-yo’d between diarrhea attacks and wicked constipation. I tried vegan eating. I ignored it. I binged on spinach; fried chicken; broth.

I was falling in love, and is there anything less conducive to love than liquid poo? I think not. Yet my love carried a diaper in his purse for me, bought me distractions, brought me warm rags, cold rags, expensive scented butt wipes. Endlessly assuring me of my beauty, my desirability, my not-stinkiness. Then and now, I sometimes lie awake at night and look at our hair, mingled on the pillow. Long dark ringlets streaked with silver, careless waves of gold and silver. It’s alchemy of the purest sort, this tangling of ours.

I got so good at ignoring that symptom – the diarrhea – that I also totally overlooked the next symptom to come along. The snakes began to bite. It started small, it must have, because I don’t really remember a particular onset. It’s like I woke up one day, about a year ago, and realized I’d been in pain for days without really registering it. It’s a low-level pain, about a one or a two on scale of one-to-ten. It’s kind of like period cramps, or the very beginning stages of labor, or early in an appendicitis attack. Sort of like a mighty hand taking all those snakes and giving a gentle squeeze. But of course after a couple of hours of that, the snakes start stirring. They don’t like being squeezed. So they start biting.

There were clues all along, of course. I can see it clear as day, now. One confounding characteristic of all my problems was a strict 12-hour clock. Moving from Atlanta to Birmingham as often as I do, I’m never really sure what time it is. But just as the diarrhea appeared at 4 am on the dime, the snakes start biting at 4 pm precisely. My current opioid habit* stifles the diarrhea nicely these days, but my eyes pop open in the pre-dawn five mornings out of seven, and my snakes are there, lazily roiling. If my internal clockwork is on Central Standard Time, the clock might say five am, but my gut knows better. It’s Snake Time. That kind of regularity must surely be a red flag.

I see in hindsight too that my eating and cooking habits took a crazy left turn two years ago. I used to love to cook and feed my friends and family. But I stopped enjoying cooking. Everything I cooked tasted a little off. Preparing a big meal left me too nauseated and tired to enjoy eating it. Raw vegetables sent me scurrying off to the bathroom almost instantly, and I had to be close to home after I ate just in case something struck me funny. I couldn’t tolerate funky or foreign smells and tastes anymore, and I mourn the loss of my iron stomach. I used to be able to tolerate Lucky Dogs from a street vendor, for God’s sake. Now I can’t look at the mold on cheese without sicking up a little.

I really was spending a decent chunk of my day in meditation and prayer by this time. My mom was recovering from a miraculous but grueling near-death experience, and I was charging headlong into a long-distance love affair. If the circumstances of my life were causing me to experience some mild discomfort (diarrhea and snakes), maybe that was just the price I had to pay? Maybe, whispered an insidious little voice, maybe we have to trade a little pain and anguish for all that sloppy, giggly fun, eh?

Thank you, Jesus, unequivocally: my love and my friends (my higher power with skin on), quickly come to reassure me that that is never so. My Higher Power does not extract a pound of pain as payment for every ounce of joy. Joy is mine, free for the taking, by the double-handful if I want. Suffering is not part of my Higher Power’s plan for me.

It was about a year ago that I began to look beyond the diagnosis of IBS-D (irritable bowel syndrome -diarrhea). I tried acupuncture; I finally went back to the GI doc, and saw his nurse practitioner. I liked her. She looked me in the eyes while I described my problems and told her I’d tried an illegal, herbal treatment for diarrhea that seemed to help a little. She looked away as she told me, reluctantly, that this doctor would never consider treating my problems with any kind of CBC oil, even if it were legal in my state. She ordered blood tests and wished me well.

Now the snakes were getting a little more fierce. It dawned on me, slowly, that they’d been eating into my sex life without my noticing. There’s just not a lot of room down there for extracurricular activity. And that’s a damn shame, because old people sex is just grand.

It was July when I had an attack of the shingles, simmering and basting slowly in the Birmingham heat, uncomfortable in the skin of my body and the confines of my mind.

Sometimes when I hate being myself, I use this little trick to slip my skin: I do something I absolutely do not want to do. It’s just to prove to myself that I can overcome myself. Overcome my self will. So I slid my fingers over the buttons of my landline and checked the voicemail for the first time in four months. I know that sounds awful. But the landline has been in my name for thirty years, and it’s got old voicemails from my kids, their high school friends. It’s the number the exterminator calls, the dentist still trying to track down my ex.

It’s a number I haven’t given out as my own for four years. I only keep the line to call my mother on it. Cell reception at my house, at the base of the hill where the cell towers live, sucks. It’s also the only telephone number my GI doctor’s office thought to call, when those blood tests came back. They may have had my cell number on my chart, but it was the landline they called when they discovered my pancreas wasn’t working right. They called it twice in May and that’s all.

I had a funny feeling when I heard the second message, listening in late July with a slash of shingles still livid across my side. It was the nurse practitioner. “You really need to schedule a cat scan,” she said. “There’s something wrong with your pancreas.” I didn’t skip a beat. I dialed that number right back and within a couple hours she called me back. On my cell. “Why did you wait so long to schedule the cat scan?” she wanted to know.

“You called the wrong telephone number with the test results,” I told her. “How soon can I have that CT scan?”

Now, I’m four months post-surgery. They removed two lesions (tumors?) from my pancreas, and the lymph node and a lesion on top of my pancreas. They took three more tumors off my liver and the surgeon confidently declared me cancer-free.

I still have the snakes, and they still bite. I still have diarrhea, and nausea, and now I vomit two to six times a week, probably because my poor pancreas was insulted and needs to heal. I have other pain, too, that I associate with my liver, on my right side and my right middle back.

Nobody tells me anymore that I’m not having any pain or that I’m not supposed to have any pain. I have opioids, in pretty small doses, that distract me from the pain. The side effects of fuzzy thinking and constipation are almost more trouble than the distraction warrants, but emotionally, I’m hugely dependent on those meds.

I’ve found CBD oil to be my most reliable friend in pain: it stimulates my appetite, destroys the nausea, lifts my mood, actually removes the pain (not just masking it like the oxycontin). I have other pain relief strategies: t’ai chi, meditation, prayer, conversation, stupid tv, challenging tv, board games, music, hot showers, meetings. I am back on my bike! My pain is of two kinds: the kind that chemicals can change, and the kind of heart-pain that comes with change. I am working on each kind of pain, the best way I can given my current state.

That heart-pain from change has two components: my own, and the pain I feel when I think about the pain my loved ones are experiencing. I can’t do much about either, but I’m at least trying to stop taking responsibility for the pain other people feel.

Both kinds of pain are real; do I have the courage, the wisdom, the desire to transmute it into something of value? What might that be?

When I took my CT scans to Emory in January, their radiologists spotted something the UAB docs did not. We’ve repeated those scans, and I’ll find out Thursday if the cancer has cropped up again or if the initial surgery missed something. I will update you as I am able.

*It’s a legal habit, thank God. I’m almost afraid to take them for fear of becoming addicted. I hear our president has proposed the death penalty as a cure for the opioid crisis. I wonder how that works?

God’s Grace In Neon Letters

Clear Creek in God's Back Yard
Clear Creek in God’s Back Yard

by Anonymous

with Karyn Zweifel

From Recovery Campus Magazine, Summer, 2015

I am no stranger to the disease of alcoholism. I have two aunts with many years in recovery and a brother still struggling. So when my husband and I visited our oldest son, Andrew, during his first semester of college out of state, I was very concerned about his behavior.

“…now I understand how the stigma of addiction and mental illness causes so much pain. Parents need to be more open, be willing to say ‘I’m really struggling,’ and get help for themselves and their children.”

He’d joined a fraternity, and during our visit, my mother’s intuition kicked in. I could tell it wasn’t just the normal college drinking experience. Andrew was secretive, and what we saw at the fraternity house was alarming. Andrew did not do well academically that first semester but convinced his dad to give him a second chance.

Continue reading God’s Grace In Neon Letters