Yell Fest – Unwelcome Distractions
With no proof whatsoever, I believe that many of us with debilitating chronic diseases are so focused on these diseases that other medical problems seem like annoying distractions. Get lost; I can’t be bothered with you. Healthy people have a troublesome symptom and they see a doctor. I, however, figure that the new symptom is just another part of CFS/ME, or I get angry and just don’t want to deal with it. Enough already. Find someone else to make miserable.
In the past fourteen years, I’ve bumped into a few disturbances which tried to lure me away from my obsession with my disease. Little fireflies flickering around my head that I’ve reached out to grab and stick in a bottle.
The first occurred in 2001. During a routine mammogram, after the technician managed to crush my breasts into painful pancakes, she showed the X-rays to the radiologist and then returned to say that he wanted to talk to me. About what? That had never happened before. What did he see? Oh please, I can’t do this.
What he saw was a tiny calcification. “And we’ve found that areas of calcification can hide cancers.” Cancer? I can’t have cancer! I already have Chronic Fatigue! “I believe you should have a biopsy.” Surgery? I can’t have surgery. I have Chronic Fatigue!
After consultation with the breast surgeon, I scheduled the lumpectomy. That was fun. I don’t remember any numbing medication, only two needles stuck into the right side of my right breast, with X-rays determining the locations. Then I was pushed into the freezing operating room, where someone stuck another needle into my left inner elbow and I passed into that lovely shimmering sleep. When I awoke, the surgeon explained that I had DCIS, Ductal Carcinoma in Situ, breast cancer localized in a milk duct – it hadn’t spread. The lumpectomy removed the affected tissue, but she wanted to take out more tissue at another date in order to make “clearer margins” and be sure there were no nasty cancer cells left.
I sleep-walked through all the procedures. After the second surgery, she suggested I talk to an oncologist to consider radiation treatment as well. The oncologist recommended radiation but I refused, knowing the side effects included the possibility of extreme fatigue and I wouldn’t do ANYTHING to exacerbate my CFS if I could avoid it. I just kept shaking my head until the surgeon and the oncologist agreed that the affected area was tiny enough and the margins big enough that I could probably get away without radiation.
It’s been 12 okay years, but with every routine mammogram, I shiver and shake until the technician releases me without saying, “The radiologist would like to speak with you.”
During one of those routine mammograms, the technician pushed the plastic plates so hard into my chest wall that she fractured a rib, which brings me to the next distracting plague: osteoporosis and an increased parathyroid hormone level.
I inherited osteoporosis from my slight, frail mother, who broke a bone somewhere in her body (rib, pelvis, femur) frequently in her final years, but who had been stooped over with a dowager’s hump or kyphosis every since I can remember, the result of vertebral fractures.
It’s bad. Even before the onset of CFS, I was breaking one rib or another about once a year. The first break came from working out on one of those ab crunch machines; as I pulled myself up I heard a crack and felt a knife stab my side. The next day I was in an agony that lasted about 2 weeks. Then the pain diminished but took another month to disappear. The second time I tripped on one of my early morning power-walks, breaking my wrist along with a rib. After that, amazingly, a rib would break with the slightest routine activity – I’d hear the familiar crack and feel the familiar side-pain.
Bone scans during my illness have showed such an alarming decrease in my bone density that many doctors have urged me to drastically increase my Vitamin D levels and take a biophosphonate drug like Boniva or Forteo. No, no, no, no, no. For years, I refused more Vitamin D, since Dr. Marshall of the Marshall Protocol believed that Vitamin D caused the inflammatory disease that lay at the heart of CFS.
Perhaps foolishly, I’ve also avoided the drugs. I’m afraid to add another medicine with possible bad side-effects into my already messed-up immune-compromised body, and the impact of these drugs on CFS patients has not been studied. The one safe, non-drug treatment, uniformly recommended to improve bone density, is weight-bearing exercise. From where I sit now, that ain’t gonna happen.
I didn’t want to do anything except find a cure for CFS. And I certainly didn’t want to risk provoking a relapse. Just leave me and my crumbling bones alone.
My bone density problem has been accompanied by high levels of parathyroid hormone, another reality I refused to confront for a while. Four parathyroid glands, each about the size of a lentil, sit in our necks somewhere behind our thyroids and regulate the amount of calcium in our blood and bones. If there’s too much PTH, calcium leaches out of bones and the blood calcium level rises. The bones turn into stringy melted mozzarella.
My doctors have insisted more and more passionately over the years, and finally last year, I agreed see if my PTH level decreased with massive doses of Vitamin D. If the PTH returned to normal levels, that would be the end of it. I’d only have to take appropriate amount of Vitamin D. Since I’d been off the Marshall Protocol for 5 years, and since the horror on the doctors’ faces when they saw my bone density scan results finally became part of my nightmares, I agreed. I took 50,000 grams of Vitamin D for 8 weeks, and then had another round of lab tests.
The PTH decreased. . .but not enough. A visit to an endocrine surgeon at New York’s Mount Sinai resulted in a sonogram that showed at least one enlarged parathyroid gland.
I had the minimally invasive surgery, not a big deal, with Dr. Inabnet, head of endocrine surgery at Mount Sinai. I spent just one day in the hospital and returned home with an ugly scar, some self-absorbing stitches and a glob of strange looking glue on my neck.
I still felt, however, that this was a tangent, a parenthesis, a digression. Except for one tiny piece of information I discovered online: a mnemonic for medical students to remember the symptoms of hyperparathyroidism is “BONES, MOANS, GROANS AND STONES.” I.e., osteoporosis and bone pain; lethargy, fatigue, and depression; abdominal disturbances like heartburn, ulcers, constipation; and kidney stones.
Well, hello. Why didn’t the earlier doctors inform me about this? I thought the only issue was BONES. Maybe, maybe, maybe, I hoped, the surgery will improve my “lethargy, fatigue and depression”? Afterwards, in fact, I had a few months of increased well-being until my CFS/ME settled back into its relapsing/remitting pattern.
Then came the heartburn firefly.
My once infrequent bouts of heartburn increased so dramatically that they actually affected the quality of my life. Prilosec and Nexium didn’t help, and I had a constant sore throat and chest and lots of belching. And it’s really true: heartburn pain can feel like you’re having a heart attack. The first time that happened I was at some play when suddenly there came a crushing in my chest so strong that I couldn’t breathe, a crushing that spread to my back and right shoulder blade. Steve and I left at intermission, thinking I might have to visit the emergency ward. As we walked out of the theater, however, I had a long bout of burping followed by complete relief. No hospital.
I’ve gone through that unique pain enough to see a gastroenterologist and had an upper endoscopy a week after the parathyroidectomy.
I was relieved when the gastroenterologist, simply declared, “Inflammation. A hiatal hernia. And I can help you with this.” She prescribed another medication whose name I love because it sounds like a bubbly champagne: Domperidone.
Two days after the parathyroid surgery, I developed a urinary tract infection. Suddenly, while peeing, I experienced a burning so severe that my hands started shaking and I almost passed out. First I thought it might be from the Percodan I had taken after the surgery. No. I stopped the Percodan and continued to burn. Then after peeing, the burning and sense of having to pee urgently lingered until I was climbing the walls, especially after not making it to the toilet and peeing all over my jeans. A urinalysis revealed the infection and I was given a prescription for an antibiotic and pyridium, a medicine which relieves the urethra pain but causes your urine to turn an amazingly bright orange which is quite beautiful under the Navajo rug hanging over the toilet on our bathroom wall, but which you can only take for 2 days.
And then, a firefly that caused the gathering light inside the jar to explode in my face. November, 2010. In a hurry to prepare a pork roast, I tried to chop some parsley with my immersion blender. Stupid. More stupid was to finger out the parsley caught in the blade. Without pulling out the plug. Somehow my right hand touched the flip switch and whirrrrrrr, I looked into the sink to see the top of my left index finger in pieces. Parsley and finger dripped from above the knuckle. Fortunately (!) Steve was home. We sped to the emergency ward, the pain thundering in pulses, and I wound up in a hospital bed for three days.
Surgery and I.V. Demerol and then home with Oxycontin and Oxycodone and pins sticking out of the bandages around my finger. I stopped the meds after the first week, but the pain continued for about 6 months after ineffective physical therapy and many doctor visits, including a consultation with The Hospital for Special Surgery.
All experts agreed that I could have the top of my finger removed, or have more surgery to fuse the bone, in order to alleviate the pain, but offered no guarantees. It’s been three years now. I want no more surgery and have adapted to life without using the finger (typing is a special challenge). It hurts more on rainy days. Usually I can feel the push-pull pressure under my mutilated fingernail (which only partly ruins the effects of a manicure.) My solution is not to think about it – and to be grateful that the pain softened and nothing worse happened.
How do I keep all these doctors and illnesses straight? I have no one with a meta-view, the cover of the box with the picture that the jigsaw is supposed to create. Instead, all these specialists treat their particular organs and never talk to each other. No one practitioner with the brilliance and expertise of Dr. Gregory House, the Sherlock Holmes of medicine, is on my side. What do all these problems add up to? Are they really separate diseases or symptoms of something bigger? Have they resulted from my mostly sedentary life for the past fourteen years? Has my immune system, exhausted as a result of CFS, found a quiet corner in which to sleep and suck its thumb?
Only I am in charge, only I am trying to make sense within this constellation of symptoms, and once in a while I feel as debilitated, angry and needy as I was in 1999 after the flu shot. What I am not, however, is as frightened. And that’s not as positive as it might seem. Because my reality right now is that if I had been diagnosed with something like esophageal cancer, I imagine I would have said, “I love you all. I still love life. But no chemo, no radiation, no nothing. Later! I’m outa here.”
So while the whirlwinds of the unknown and the uncomfortable blow the escaped fireflies in a turmoil around my head, I sometimes find myself in the doldrums. Doldrums. What a great word. That area of the sea near the equator where ships are idled because of no wind. I made my freshmen English students memorize Coleridge’s description of the Ancient Mariner’s ship in the Doldrums:
Day after day,
Day after day,
We stuck. Nor breath nor motion.
As idle as a painted ship
Upon a painted ocean.
DOL drums. A trochee (one stressed followed by one unstressed syllable) imitating and producing the “stuck”, energy-less moment as the voice drops. DOL drums. The hard d’s, the long moan of the o, the slip off the precipice of the l, the smack into the um. DOWN in the DOLdrums. A dactyl followed by a trochee. Stagnation. Slump. Depression. Oh Lord.
It ain’t easy in the Doldrums.
Distractions More Welcome
Recently, I’m discovering it’s important to not only keep plodding
along doing little things as often as time and energy allow, but
to also look back and acknowledge and celebrate what has been
achieved. It’s easy to forget just how much one has done.
Michael Knobbs, from his book Creative Sustainability as quoted on his website
As a clear Type A personality whose mantra has always been ‘Accomplish Something!’, even in the midst of the Doldrums I’ve had to find justifications of my existence. Though the size of my life has withered like a shrunken head, I refuse to just stagnate, and manage to take my mind off misery with little chores and activities. Clearly, these distractions work better on some days than on others. Here they are, in no special order.
My mother was a great crocheter. She’d sit in her easy chair watching television, her hands skillfully flying through the loops and weaves of an afghan spread over her lap. She made only afghans: for babies, for queen and king size beds, for dorm rooms, for laps. The colors were usually atrocious, but if I gave her clear requirements (“only one color – beige – and no stripes!”) the result was quite beautiful and useful.
Sadly, I never learned to crochet. But mom must have shown me some basic knit stitches, for when I was pregnant the first time in 1967, I listened to 60’s radio and knitted a basket-weave baby blanket and tiny cap. I knit nothing in the 35 years since, but for some reason, after illness struck, I started again. I took a very short and shaky field trip to a local craft store to buy wool, needles and books for beginners. First scarves. I knit everyone scarves. Itchy scarves, skinny scarves, multi-colored scarves with self-striping yarns. One or two expensive cashmere scarves for myself.
When I moved to more complex shawls, my CFS brain fog often caused me to lose track of the pattern. I’d come to the end of a row and discover too few stitches to finish the design. I’d tear out and re-knit, tear out and re-knit in frustration and failure. I actually finished 2 shawls: one isn’t badly done, but only when I was actually in the middle of the piece did I realize the yarn, which I thought was kind of purply and pink, had a deplorable greenish-yellow streak in bright light. That one hides in the dark of my bottom drawer. Another is a long, heavy grey lacy thing with fringe, which I’ve used for two chilly outdoor weddings, hoping no one will notice the six or seven rows where I knit the pattern backward, i.e., it’s on the wrong rather than the right side.
My latest kick is baby blankets. I’ve made a few fancy ones with bobbles and what’s called feathers and fans, and some very simple but pretty receiving-style ones. I’ve also made a few hats and booties. But I still can’t always keep the patterns straight from row to row and some pieces end up with dizzy patches, but I figure that people will assume that, like a Persian rug maker, I included the flaw to indicate that only God is perfect. Besides, don’t flaws and imperfections just indicate that the piece isn’t machine-made and lower quality?
Knitting rescues me from my worst judgmental self during long empty hours. Then, on days when I ache too much to even knit, and all I can do is watch the daytime USA and TNT reruns of wise-cracking sexy cops and shrinks and doctors and spies and lawyers, I actually convince myself that I’m not always so unproductive.
I Study Spanish. Sort of.
About five years ago, Joyce and I decided to study Spanish. We bought text books, readers and tapes, met once a week, and gave ourselves homework assignments. Laughing a lot but keeping each other disciplined and on-task, we learned vocabulary, grammar rules and verb conjugations. Sometimes we watched subtitled Spanish movies. Once a week wasn’t nearly enough – and at times when one or the other was away or ill, we missed weeks – but our reading skills progressed, and though our accents were awful, we talked more and more in Spanish. My big problem has been understanding spoken Spanish, as evidenced by conversations with Rosa, my Mexican housekeeper. Everything she said sounded like one long word. I’d have to guess her meaning from the few words I could recognize, but mostly stared foolishly and repeated, “No comprendo.”
I have a book and accompanying CD, “Las Puertas Retorcidas” (The Twisted Doors), subtitled “The Scariest Way in the World to Learn Spanish”, about a little girl who saves a family trapped in a haunted house. I listen to the CD as I read the story, and, as with my knitting, I feel like the hour or so has a purpose. I’ve also decided to learn three new Spanish words each day. How’s that for giving life meaning? I watch an excellent online series, Destinos, a 52 episode soap-opera designed to teach Spanish listening and speaking skills. And Rosa and I keep up our Spanish small talk, even though I keep telling her, “Hasta huevos” (“Until eggs”) instead of “Hasta jueves (“Until Thursday”) when she leaves, and to use “sopa” (soup) instead of “jambon” (soap) on the countertops.
Steve and I talk about taking a cruise that includes Spanish cities. Who knows?
I Watch Great Courses DVDs
Which are “courses taught by the most engaging professors that universities like Oxford, Stanford, Princeton, and Georgetown have to offer. The Great Courses maintains a catalog of more than 390 courses in science, literature, history, philosophy, business, religion, mathematics, fine arts, music, and better living.” http://www.thegreatcourses.com
ill told Joyce and me that she had stowed away in her house a Great Course DVD on linguistics which she had never watched. We decided to give it a try, and fell in love with the smart and funny Dr. John McWhorter. The three of us formed The University of Highland Park and meet once a week at Joyce’s house. After the Linguistics course, we moved to Greek Mythology, then to The Iliad and The Odyssey, then to Quantum Physics (which we abandoned, out heads spinning, after about four sessions), and then to The United States and the Middle East. We have just read James Joyce’s Ulysses and are now watching the series on James Joyce’s Ulysses.
So I’m involved in something larger than my obsession with the damn illness, even if I can’t remember anything about the tone system in Chinese, phonemes, or the Eleusinian mysteries.
The book club has helped restore the function of reading in my life. I need my stories.
Inside our dysfunctional house my father chased my brother up the stairs while my mother cried from the living room at the bottom. “Charlie, calm down. Please calm down.” Maybe my brother wet the bed again, or maybe he did something typically stupid, like forget to arrange the shower curtain so the water didn’t pour onto the bathroom floor. Who knows? The house often throbbed with anger and pleading and fear as my father caught and spanked David, my heart breaking.
I took my copy of Black Beauty out the back door and sat on the steps under the hanging laundry, where I shut out the bedlam with the voice of the horse as he told of his youth on an English farm with his mother; of the other horses with names like Rob Roy and Duchess and Lizzie and Hotspur; of all his owners, some kind and some brutal; and of his happy final days with Farmer Thoroughgood and the three sisters.
I disappeared into nineteenth century England on those backyard steps, and have since adored the novels of Dickens, Austen, the Brontes, Lady Gaskell, Thackery, Trollope, Eliot, and oh, Thomas Hardy, where order, custom, etiquette and clear expectations reign, not just in the social structures they depict but in the plots and prose as well. Formal syntax. Everything under control. And when characters or situations challenge the norm, like Heathcliff or Becky Sharp or Eustacia Vye, even when authors praise emotion over reason, or when storms rage over the heath, the rebellions and passions are neat and contained and everyone has afternoon tea and lovely flower gardens as order is gracefully restored at the end.
My father read nothing but the Daily News. Though in her later years my mother became a reader of best-selling female novelists like Danielle Steele and Barbara Taylor Bradford, when I was growing up, she only went to work and crocheted afghans, so though we had a bookcase, there were only two books. I read both. The Hammersmith Murders was a mystery featuring the Scotland Yard detective Evan Pinkerton. I remember nothing except that it was British and so I loved it. And The Deerslayer was James Fenimore Cooper’s saga of the frontiersman Natty Bumpo.
I welcomed any release from my family’s turmoil. I spent a lot of time in the West New York library, and on one fateful day, I bumped into my young and cute high school physics teacher. I was probably a junior. He recommended a book he had just finished: Johnny Got His Gun by Dalton Trumbo. How could I not read it? He was my teacher, for heavens sake, and had actually noticed me. But OMG. I was inside the head of Joe Bonham, left a basket-case after a WWI artillery blast. With no arms, legs, eyes, ears, teeth or tongue, Joe is nevertheless aware of his condition, and Trumbo takes his reader through Joe’s agonies. What was this teacher thinking? I finished the book, devastated and haunted but intoxicated with its power. No matter how nauseating and gruesome, look where language could take me.
So I became an English major and English teacher. I read with love and intensity.
Then for about a year following the flu shot, I just could not read. At first, I was too preoccupied to focus on anything outside of the disease and the dysfunction of my own body. I didn’t even try. When I finally picked up a book, the extreme brain fog and headaches created a physical barrier so great that I couldn’t penetrate to make sense out of the words. One terrible afternoon, I sat on our porch in the lovely sun with a novel. I understood it was something about gypsies and prejudice and a beautiful heroine, but I kept reading the same paragraphs over and over, realizing each time that I couldn’t remember anything. I panicked, adding another layer to my disability. How could I exist without books?
But I persevered. And then in 2002, Rona asked if I wanted to be part of a book club she was starting. I was worried, but agreed. Sure I would. I had to.
In the first 2 or 3 years, I still fought the intense brain fog and headaches and some panic in order to read the books and then concentrate enough to participate during the meetings, but the process always felt worthwhile. My head is definitely much clearer these days, and I will forfeit a meeting only when I’m at my very worst. I’m even able to host meetings once in a while.
Harriet, Madeleine, Lois, Mona, Carol and Rona are all retired teachers. Since 2002, we’ve been gathering once a month at 10:00 am in a member’s house with bagels and lox (except that Harriet often bakes some amazing and intimidating breakfast cake or casserole.) I don’t think we’ve ever had a bad or disappointing discussion whether we loved or hated a chosen book. We’re loyal and respectful and diligent and smart. After a few minutes of opening hello-again chatter, we enthusiastically stay on topic for about an hour and ½, sharing perspectives and judgments. We read mainly fiction with some non-fiction, and try to find work that’s not just engaging but also challenging, well-written and rich in meaning.
The book club has helped restore the function of reading in my life. I need my stories.
And here’s a wonderful spin-off: We now meet twice a month to read aloud. Our first choice was Dostoyevsky’s The Brothers Karamazov. I think we started because someone suggested it as a regular selection, but members felt insecure about tackling it alone. “Why not read it together?” someone asked. So we started and it’s great fun. We take turns reading, we struggle through the difficult philosophy together, we remind each other of characters and plot points easily forgotten, and we laugh a lot. No one minded that it took two years to finish Brothers and we recently started Buddenbrooks by Thomas Mann.
I am grateful to have these six remarkable women in my life. They help me forget and feel normal.
In the earliest days of my disease, to switch off what Buddhists call “the monkey mind,” the clamoring, anxious, uncontrollable thoughts that battered frantically against the walls of my padded cell, I’d turn on the little TV in my bedroom. I discovered cable reruns of old programs I’d scorned in my healthy life, and became addicted to not only Chicago Hope, but also Buffy the Vampire Slayer, Coach and Malcolm in the Middle. I also compulsively watched JAG (because of the intriguing sparring romance between handsome Harmon Rabb and fellow Navy lawyer Sarah MacKenzie, which became one of my greatest distractions.)
But Law and Order is the show that saved my life. Some L and O episode can be found on some channel any time of the night or day. First the original, then Special Victims Unit, and then Criminal Intent. All the characters – prosecutors, cops, defense lawyers, murderers and rapists – have become comfortable parts of my life, friends on days when I’m too impaired to even talk on the phone. Even now I re-watch shows I’ve already seen. I’ve learned that the killer is almost always the most famous or recognizable actor/suspect, and that except in very few cases, the justice system will prevail.
– I write this.
Not every day, though I wish I always had the stamina and the heart. I have to fight not only fatigue and pain, but also the fear that I’ll get more depressed and spiral down by recalling and dwelling on past misery, a fear which is almost always unfounded because the effect is usually cathartic and helpful. Or more frustrated and useless when I can’t think clearly enough to find words and make sense, or when I realize I’m just repeating what I’ve already written. I love when I get on a roll because then I feel the most sense of accomplishment and can face the rest of the day with some satisfaction.
These distractions are the light winds of a kind of life in the doldrums.
Come to think of it, the most basic definition of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, is “dis-traction.” The disease causes the inability to maintain any kind of traction or friction which might enable the sufferer to move forward in life. Stasis. Immobility. Constant wheel spinning.
The flow of your life crashes into an enormous dam so that you feel only place and not time.
Strictly speaking, then, the activities in which you’re actually able to engage (knitting, etc.) re-establish a kind of traction that will pull you back into the movement of time. Rather than distractions, they are re-tractions, from the same root trahere, meaning ‘to pull’ with the prefix re meaning ‘back’. Slowly and intermittently, you slip back into your former life, into time. You find a few holes in the enormous dam.
So I’ve just written myself into a wicked whirlpool of words. Overthink much?
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