Loose Leaf Notes

I was trying to figure out where I could go to get away from what the doctor was telling me. I wondered why he hadn’t taken me to a private room to give me such devastating news. Dan only had a 2% chance of living; they weren’t going to perform liver transplant surgery with those odds, he said. The words 2% were the equivalent of a death sentence, but he spoke them as though he were giving me the fat content of a carton of milk. ~ excerpt from A Box of Kleenex, HERE.

The word “hospital” is related to “hospice” and “hospitality,” all words that might conjure thoughts of “guest,” “care,” and “death.” For me, death is what I associate most with hospitals. Even though both my sons were born in hospitals, it’s the hospital deaths I’ve experienced that stand out the most. Because of them I became intimate with hospital settings, after spending many days in patient rooms and waiting rooms in an altered, yet heighten state of awareness.

In 2001, my brother Dan was desperately in need of a new liver. First, he was deemed too healthy to be a priority on the liver transplant waiting list. Then, when he took a sharp turn for the worst and was hospitalized, he was determined to be too sick to withstand the surgery. I remember the doctor discussing dialysis after Danny’s kidneys shut down. “It’s like putting new brakes in a car when you really need a new transmission,” he said.

Spending the last few weeks of his life in the hospital, Dan endured many painful procedures and interventions. The interventions might have given me and my family more time to get used to the idea that he was dying, but they also could have weakened him to the point of accelerating his death. He had two liver doctors, a kidney doctor, a lung doctor, a stomach doctor, a pain management team, a physical therapist, and an occasional surgeon taking care of different body parts, but no doctor oversaw the person Dan was, except for the priest, but he was more interested in Dan’s soul.

When my eighty-one year old father was hospitalized four years later after a car accident, he initially seemed fine. Later, an X-ray would show a fracture in his neck vertebrae. Even though it was never determined if it was an old fracture, a result of the accident, stable or not, doctors decided he would need to stay in the hospital and wear a neck brace as a safety measure.

My dad’s worst nightmare started when he was given Haldol – a powerful antipsychotic drug, sometimes used as a chemical restraint – for agitation. The Haldol led to heart irregularities, which led to more drugs. He eventually contracted pneumonia, as a direct result of hospital interventions. After being bedridden for five weeks, and surviving in spite of it, he was helped out of bed for a wheelchair ride, given by my sister, Sherry, on what turned out to be the last day of his life. Nobody was able to tell us what caused his death that evening, but I suspect a blood clot, created from being immobilized for so long, stopped his heart.

What the hospital staff didn’t know when they treated my dad for agitation was that my mother regularly read him horror stories out loud about people dying in hospitals from medical errors and secondary infections. Yes, he was agitated; he wanted out of the hospital in the worst way.

Some popular treatments create symptoms worse than those of the illness they are treating. The side effects from one drug can lead to another drug being prescribed, bringing on even more troubling side effects. One could argue that drugs don’t cure illnesses but that they only suppress symptoms. Some drugs have a rebound effect, which means that they eventually bring about the very symptoms they are treating. Others are prescribed only to be recalled later when it has been determined that they have killed people.

A well known 1999 study shocked the country with its findings when it was announced that hospital errors kill 195,000 people each year. A few years later another study found that about two million infections are acquired in U.S. hospitals each year, killing about 90,000 patients yearly. More recently it was reported that deaths from adverse reactions to prescription drugs have more than doubled in last ten years. Last week we were told that the cough medicines, linked with the deaths of some young children, are not only risky but that they aren’t even effective treatments.

So why do so many of us still religiously trust modern medicine? Why doesn’t my insurance company cover the alternative treatments that have proven helpful to me? Why are parents sometimes forced by courts to use standard medical practices when the record is so bad? The Institute of Health, National Academy of Sciences, which reported the number of deaths by medical errors in 1999, said that those deaths exceeded the number of those due to motor vehicle accidents, breast cancer, and AIDS. Considering that, and the latest alarming findings, is it any wonder that a number of Americans refuse that flu shot that still contains mercury?

Years ago women pushed for family-centered birth practices that wouldn’t pathologize birth. As some were moving towards midwife assisted homebirth options, birthing centers sprung up throughout the country in response. At the same time, families and health care practitioners were advocating for more family-centered and humane deaths, and the hospice movement was born. But what about everything that exists between birth and death? Could we resist the urge to pathologize health care?

Dr Robert Mendelsohn, author of Confessions of a Medical Heretic, has made the statement, “I believe that more than ninety percent of Modern Medicine could disappear from the face of the earth – doctors, hospitals, drugs, and equipment – and the effect on our health would be immediate and beneficial.” I agree that we’d be better off returning to simple remedies, using the handful of drugs that have proven themselves over time, and letting nature take its course when appropriate. For all our drugs and medical procedures, we don’t seem any healthier, or at the very least, we seem to have traded the plague and polio for diabetes, cancer, AIDS, and autism.

In Medelsohn’s book, first copyrighted in 1979, in a chapter titled “If This is Preventive Medicine, I’ll Take My Chances with Disease,” he discusses the risk of childhood vaccinations, all three of them. Now there are twelve childhood vaccines that the CDC recommends and that most schools require, with more being developed every day. It worries me that because some vaccines are administered more than once, most children have received twenty-three vaccines by the time they are two years old. And why has it been left up to parents to fight for safer vaccines? Why are they expected prove a link between vaccines and autism, or other adverse reactions? Shouldn’t it be up to the makers of vaccines to prove they are safe?

I do appreciate the care given by individuals in the health care field and the success stories of modern medicine. But I believe, on the whole, the system is unacceptably flawed, to the point where being in the hospital is like playing Russian roulette and following a doctor’s every order has the potential of making us guinea pigs for pharmaceutical company profits.

Post notes: The following thoughts have been brewing in me for a long time, but I found myself avoiding the enormity of such a complicated subject. I was hoping the Sunday Scribblings writing prompt would be one about umbrellas, since I have some great photos of me with my purple one out in yesterday’s rain. But the prompt was “hospital,” and it acted as nudge, causing these words to finally converge.

Posted by Colleen at 5:14 PM | Permalink | Comments (26)

Sometimes I think having chronic fatigue is something like having a drinking problem. When I partake in a social life, I live it up large, but soon I have to sneak away to find a place to sleep it off. As I rest in my own little world, hearing the voices and sounds of others carrying on, I feel illicit and sadly set apart. But if I don’t regularly nip at the nap, if I go too long and do too much I find myself staggering, my words start to slur, and my brain can no longer add two and two together. I get hangovers too. For every few hours I spend out, I need to match those hours recovering at home.

I recently posted about how a pink sparkly FloydFest wristband could take me almost anywhere on the festival site. I spent four hours on the opening day of FloydFest (our town’s four day world music festival) with my son and his fiddle playing girlfriend. I listened to her play with The Barrel House Mamas, had dinner and a beer with them in the hospitality tent, and talked with friends I ran into. In the middle of Sam Bush’s first set, I headed for home, knowing how prone I am to sensory overload.

Judging by the way I felt the next day, there was no question that I would not be going back up to the festival, just six miles from my house on the Blue Ridge Parkway, especially since I knew I had to conserve my energy for a full day at the site on Saturday. Not only was I going to miss Friday’s FloydFest, I had cancel my trip to Blacksburg to attend the Free Press Open House, marking the close of twenty-four years of publication in the name of peace and justice. As I dragged myself around the house, waiting for my body to catch up with the rest of me, I kept noticing my sparkly pink wristband and found myself thinking, ‘there are places even a sparkly pink wrist band can’t take you.’ With a four day pass, earned by performing poetry with the FloydFest Poetree Players (on Saturday) and the publication of my essay in the program, I’d be lucky if I could attend one full day and a half.

Yesterday I came across a succinct definition of Chronic Fatigue Syndrome posted on an Environmental Illness Resource site. It was based on a 2006 study, the largest study to date on CFS, which determined a biological basis for CFS. I felt emotional as I read it, not only because I’ve been personally managing CFS for thirty years now, but because I knew that it would bring new understanding to CFS.

A common perception about CFS is that it’s associated with being bedridden, which is not always the case. Personally, I’ve never been bedridden, but I do know the bed better than most. Beyond the early acute stages of the disorder, which can be quite dramatic, people with CFS can appear completely normal. But here’s the catch: If everyone were given a daily deck of 52 cards of energy to spend, I would only ever get 30 (and that’s on a good day). I have to plan carefully how to spend them and stay away from situations that drain me.

Although the new findings on CFS weren’t surprising to me and didn’t offer anything new in the way of treatment, knowing they would help educate the public and the medical profession about CFS gave me a bittersweet sense of relief. Here’s the flyer I’d like to stand on a street corner and pass out:

At the press briefing, Dr. Reeves, the lead CFS researcher at the CDC, stated “For the first time ever, we have documented that people with CFS have certain genes that are related to those parts of brain activity that mediate the stress response. And that they have different gene activity levels…that are related to their body’s ability to adapt to challenges and stresses that occur throughout life, such as infections, injury, trauma or various adverse events.” What this means is that people with chronic fatigue syndrome generally have a lower tolerance to these various stressors. The result of this is that in people predisposed to CFS, their bodies can become overwhelmed by events that other people would be able to shrug off, and this is where dysfunction in various body systems such as the nervous, endocrine and immune systems sets in. The researchers at the CDC went on to say that they identified a number of different subgroups within the patients tested, verifying what many had suspected, that CFS isn't a single easily identifiable disease with a single cause and diagnostic marker, but rather the result of a complex disease process. They also stated that this research proves once and for all that CFS is a very real biological disease and hope that it will lead to better diagnosis and treatment in the near future.

Do you know anyone with CFS? Read more HERE.

Posted by Colleen at 9:26 AM | Permalink | Comments (22)

In early January I bragged on my blog that I didn’t have a New Year’s Resolution. After completing a year following my passion – retiring from full-time foster care so that I could write as much as I wanted to – what would I possibly want to change? I recall talking about how the two most important events of 2006 actually happened to my sons, when each of them at ages 24 and 26 purchased their first homes.

“So many of my personal goals have been met. I’m just happy now to watch Josh and Dylan manifest theirs,” I said to my husband, Joe, over a New Year’s morning breakfast of soft-boiled eggs, bagels, and Earl Grey tea.

But I did have a New Year’s resolution, one that would soon be staring me in the face, or in the lower back, in my case. A week into the New Year, while down in our cellar putting away Christmas ornaments, I dropped to the ground in pain from a lower back spasm. Like the fist of a bully grabs a collar and twists, I was yanked from behind and forced to admit that I had been sitting at my computer too long, for most of 2006. The clincher (pun intended here) was a political commentary I just finished writing on Saddam’s hanging. It was a dark subject that I struggled with, one that involved too many gruesome details, fact checking, and nit picking.

I started my blog in 2005 to get a break from writing political commentaries, which I began writing when my friend Alwyn and I started a monthly publication during the first Gulf War called “The Bell: A Call to Peace.” Over the years my commentaries, which have been published online and in the Roanoke Times, provided a good outlet for the activist in me. More recently, writing them has felt like my way of yelling at the TV.

I wanted more humor. I wanted to let my writer’s hair down and let the Irish storyteller in me out. So, I posted a photo of me in the Wicklow Mountains of Ireland with a shamrock pinned to my sweater, next to an enticing quote by Michel de Montaigne, Things I would not tell anyone, I tell the public, and I called it Loose Leaf Notes, this blog.

Blogging for this past year and a half has given me a forum and the incentive to write regularly. It’s provided me with a self-made writer’s training ground. “Some people go back to school, but my blog is my crash course in creative writing,” I told Joe. I like that with blog writing, I get to mix it up. A week’s worth of entries might include creative prose, poetry, politics, photos, and even an occasional game, known in the blogsphere as a meme. And I’m not just talking to my TV. I wasn’t long into blogging when a readership began to develop, people who gave feedback, left interesting comments, and invited me to join in on conversations taking place on their blogs.

But there is a downside to blogging, as my recent fall made clear. Like other computer uses, blogging is a sedentary activity that can lead to carpal tunnel, tendonitis, and other repetitive stress injuries when overdone. How strange it is that less than ten years ago, I hadn’t touched a computer and didn’t want to, and now I was spending more time on one than anything else. In the past, I wrote with a pen on paper while rocking in an easy chair in the hub of my living room where life’s distractions called me to take frequent breaks.

The pain in my back turned out to be only the first in a series of signs that all was not right with me. Much of January and February was spent getting my health back on track. I visited with Katherine, the Harvest Moon herbalist, who stocked me up with supplements; scheduled a session with Shirley Ann, a local rolfer; made some diet changes; and had some blood tests done to rule out the worst possibilities out.

This morning, I walked to the mailbox, testing the strength of my back and reviewing the changes of the past couple of months. Our dog Jasmine trotted happily ahead of me, stopping every few seconds to look back, or to wait for me to catch up. Walking felt good, so much so that when I arrived at the mailboxes along the dirt road that parallels the Blue Ridge Parkway, I kept going. The bounce in Jasmine’s step picked-up. She was overdue for a long walk too. By the time I passed the hedgerow of rhododendrons that lead to the old-time neighborhood church on Morning Dew, my arms were swinging and I was enthusiastically vowing to make walking a part of my everyday.

So there you have it. The 2007 New Year’s Resolution I didn’t think I had. My back feels better already. So does my dog.

Posted by Colleen at 11:35 PM | Permalink | Comments (18)

In the past month I’ve been to two doctors and have had four drugs prescribed, all of which I have declined to take.

A New Year brought a new array of symptoms on top of the ones related to Chronic Fatigue that I’ve been managing for years. The worst new symptom had me worried about my heart when angina-like pain woke me at night more than once. The first doctor suspected acid reflux and, although I didn’t have any heartburn, when I put all my combined symptoms together, I agreed. But I declined the little purple pill, and opted for a round of pro-biotics, enzymes, and aloe vera with good results so far.

When my blood work came back and it was discovered that my cholesterol had suddenly shot up 100 points, I was offered at statan drug to lower it, along with an anti-depressant, just to see if I’d feel better on one. The doctor, to her credit, was interested in ruling out things that might be responsible for my long term Chronic Fatigue symptoms. Once she discovered that my thyroid tests were not completely normal (I told her they wouldn’t be) due to the antibodies I make against my thyroid, she referred me to an endocrinologist.

I was treated for hyper-thyroid in 1994, so seeing an endocrinologist wasn’t new to me. While on medication (PTU) then to block the production of thyroid hormone, my fatigue was greatly relieved, but as soon as I went off it my symptoms came back. That endocrinologist had no suggestions for improving the way I felt once my thyroid levels returned to the normal range (even though I was still making anti-bodies).

Okay, so now it turns out that my thyroid levels are on the low side. They’re not low enough to treat, I was told, but “they may be too low for you,” the new endocrinologist told me, as he was comparing my current levels to those of a few years ago. Then he suggested I go on Hormone Replacement Therapy (HRT)! HRT is something I had no intention of using even before the recent findings on the risks involved with taking it came out. If I had dramatic symptoms that I thought could be helped by it, I’d consider it, but I don’t and I haven’t.

Thirty-five years of troubling symptoms that don’t fit in standard disease category is a lot of baggage to carry into a doctor’s office. Each doctor has to start from square one. Most of my symptoms aren’t new to me, but as a new patient, I sometimes feel like some doctors think I was born yesterday. If I could just transmit everything I’ve learned and tried over the years, we might be able to get on the same page, but it hasn’t happened yet.

I wasn’t sure that I was getting through to the doctor that I was a low-maintenance patient, one who wasn’t interested in the treadmill run-around of taking medicines with possible side effects sometimes worse than the symptoms they’re supposed to be treating, so I told him.

“I’ve had most of my CFS symptoms since I was in mid 20’s,” I said. “And I’ve been taking Don Quai to balance my hormone levels and it’s been working fine.”

When he made light of an alternative therapy to improve adrenal function to an intern who was also in the room, I said, “The people who try alternative therapies are those who haven’t been helped by the mainstream medicine. And if the treatments bring relief, why not?”

According to “Solved the Riddle of Illness,” a book by Dr. Stephen Langer about the relationship between thyroid disease and many other diseases, I fit the profile of someone with Hashimoto’s Thyroiditis. Hashimito’s is an autoimmune disorder that can cause the thyroid to go hyper or hypo at different times of life. I wondered why the doctor didn’t suggest trying a low dose of thyroid hormone (something that has no risk) instead of HRT (something that does). But it wasn’t until I got home and pulled out “Solved The Riddle of Illness” (I wish it really was that easy), a book that I read many years ago, that I discovered all the new symptoms – slowed digestion, shortness of breath, trouble swallowing, and even the spike in cholesterol – could be related to low functioning thyroid.

When it was time to leave the treatment room, I picked up my coat and pocketbook and followed the doctor out, walking down the wrong way through the hallway. “You’re going the wrong way,” he pointed out.

“Oh, I have dyslexia too. Do you have a pill for that?” I joked.

He laughed, but I could see that he also seemed to be pondering what pill he could suggest.

Posted by Colleen at 9:04 AM | Permalink | Comments (22)

A few days before Christmas my husband and I volunteered to wrap presents for a toy drive at the Floyd Rescue Squad. Inside the station there were wrapping supplies on one table and a pile of toys on another. We weren’t long into cutting, wrapping, and taping before the child in me came out. The dolls in particular made me giddy. There were baby dolls, Barbie dolls, dolls with dishes, horses, and hair brushes. Some dolls talked when you squeezed them, others had eyelashes that could flutter. There were plastic dolls, soft stuffed dolls, and stocking stuffer dolls.

“Look at this one! I would have loved to have this,” I exclaimed and then announced to my husband, “I want to wrap all the dolls, okay?”

He smiled, enjoying my sense of play. I understood pretty quickly that wrapping the dolls appealed to my inner child, but it wasn’t until later in the day that the full scope of how meaningful the activity was became apparent to me.

At the age of four, I had a very special favorite baby doll that got left at my Aunt and Uncle’s summer cabin in Cape Cod. By the time I realized my doll was left behind, my family was already too far down the road, headed for home. I remember the intensity of my feelings as I cried for my doll. Caring for it was something I took very seriously. I can see how much I loved the doll when I look at the rare old photograph of me with it. One such photo that I’ve recently had blown up and copied is pinned to my office bulletin board. In it, I’m beaming, wearing a wool snow suit and a matching wool hat trimmed in fur and standing proudly next to the baby carriage I used to push my doll in.

Crying didn’t get my doll back. I remember rocking hard against the back of the car seat on the ride home from the Cape and vowing to never forget. But I did forget, at least consciously. By the time the left-behind doll reappeared a month or two later, the weather had changed to cold and the doll was almost unrecognizable to me. Months being like years to child, the bond had been broken, my baby carriage left empty too long. I don’t remember ever playing with the doll again, and I never got attached to another one in the same way.

As an adult, I’ve been able to piece together the larger significance that the loss of that doll held for me. It was symbolic of the two occasions in my infancy that I was separated from my mother (and all my family members) for extended amounts of time. Leaving the baby doll behind when I was four years old was a recreation of me being left behind. No wonder it hurt so much.

I wrapped about 15 dolls at the Rescue Squad Station while thinking about the little girls who would be receiving them. It was probably the most meaningful activity I did this Christmas season. Not only was it like an hour of unplanned therapy, it was also the embodiment of Christmas spirit because in wrapping those dolls for other little girls I received much more than I gave.

Posted by Colleen at 4:54 PM | Permalink | Comments (21)

It was 1983. I was living near Houston, Texas, with two little sons and an ongoing case of Chronic Fatigue Syndrome. Besides having compromised energy, I was experiencing chronic sore lymph nodes, particularly in my neck and to the point that it hurt to turn my neck. At that time I was about five years into my symptoms and was searching for a cure, or at least an explanation, but I had given up thinking that the medical establishment could help me. Blood tests showed nothing was wrong. There was no name for what I had yet.

I was loosely associated with a nearby Unity Church (a Christian based church with a metaphysical bent) after having my son Dylan christened there in 1982. The Unity minister, a woman named Barry, called me one day to let me know that a psychic surgeon from the Philippines was in town. Knowing I was dealing with health issues, she asked if I might want to set-up an appointment. I did.

I tend to be skeptically open-minded about things I don’t understand. I had seen the TV special debunking psychic surgery (going into the body with hands and without cutting), but it seemed they were bent on debunking it. I hoped I would discover if it was for-real or not.

Stretched out on a massage table, I didn’t know what to expect. The dark haired surgeon who stood over me asked in broken English why I had come, before starting to work on my neck. I felt his hands press deeply into my skin and was startled to feel fluid drip down. Was it my own blood?

By the time he began working on my stomach he asked if I wanted to watch, so I leaned up to study his every move, hoping my curiosity would be satisfied. Once again, I saw his hands penetrate into my skin, but I wasn’t convinced that they were actually inside my body. He asked if I knew that I had an adhesion, while holding up a two inch piece of what looked like skin. At the time, I didn’t even know what an adhesion was, but when he told me it was scar tissue, I understood.

After my second cesarean, on occasion when I moved a certain way, I would experience a sharp pulsating pain, something akin to a “Charlie horse.” When it happened, I could visually see spasms on the left side of my stomach. I never thought to get it checked out because the pain never lasted long.

After the session, I was stunned, trying to integrate what had happened. I had asked the physic surgeon some questions but because of our language barrier I got no satisfying answers. His wife was American, so I made sure to talk to her before I left. I asked her two questions. First, ‘how is it possible to go into the body without a knife and leave no scar?’ She talked about it being like other body work, such as reiki, a healing technique that involves the laying on of hands. I was familiar with reflexology and acupressure, and she reminded me that when doing acupressure, a practitioner presses a part of the body to the point where it seems to open up. “He creates so much energy with his hands that they part cells,” she told me. She might have used laser surgery (cutting through tissue with high intensity light) as an analogy to explain psychic surgery, but, as far as I know, it hadn’t been invented yet.

My second question was “Why the Philippines? Why do physic surgeons come from there?" She said it was because they grow up with the tradition. They are born into it, accept it, and are trained from an early age to perform it.

I wasn’t convinced by the actual physic surgery session that anything significant had happened to me, but I came to believe something happened because the pulsating pain I sometimes felt on the side of my stomach never came back. Although I continued to experience the symptoms of CFS, my neck pain and mobility were markedly improved.

Even after having it performed on me, I can’t say whether physic surgery is real or not, but the experience taught me that anything could be possible … even if it isn’t logical.

Post note: My daughter-in-law is a R.N. who is furthering her nursing studies. Imagine my surprise when I learned that she was doing a paper on psychic surgery? Imagine hers when she found I had an experience with it? This entry was the result of her asking me to write down my story.

Posted by Colleen at 8:57 AM | Permalink | Comments (23)

Somewhere over the weekend I lost my sense of humor. I wasn’t expecting to lose it and was caught off guard when I did. I had it on Saturday night while wearing Kyla’s ruby red slippers. I was feeling pretty good Sunday morning when Joe and I went for a walk.

Sometimes it seems that the better I feel, the harder I can be knocked down. Was it a remark I took too seriously? Some feedback I didn’t want to hear? Will I stuff my bad feelings in with the rest of my emotional baggage, or will my bad feelings just wear off in time? If I bury them, won’t they take root and sprout up at some other time? Can I just change my mind and not feel them anymore? Where do bad feelings go?

Driving to town Monday morning, on my way to play Scrabble with Mara, I spotted a single burnt-orange couch cushion lying in the middle of the road. I didn’t smile at the unlikely sight or stop to take a picture, as I normally would. Instead, the out-of-place sad cushion reminded me how out-of-place I felt. It was then that I knew I had lost my sense of humor. It was then that I decided I wanted it back.

Posted by Colleen at 11:53 PM | Permalink | Comments (25)

I want a pink blow-up raft … to drift carefree …in a body of water I belong to …

A pink blow-up raft floated into my consciousness during a recent therapy session. “When’s the first time you thought of a pink raft?” my therapist asked me with interest. We both recognized that the raft was a visual signpost, but where would it lead? No doubt, it would take some time for me to reflect on its meaning.

Not like a stone skipping in and out … that plummets to the bottom when it’s done …

During the following week, I realized that my desire for a pink raft was not a whim; it was real. I not only wanted one, I needed it. After a period of self-exploration, I came to understand that the pink raft was a symbol related to my need for support, to be carried. This need likely related back to my early childhood and infancy when I experienced several traumatic separations from my mother. One such incident happened when I was hospitalized for burns for several weeks at the age of 7 months. But there were others.

I want a pink raft more … than a girl wants a Barbie doll … or a pink poodle skirt of quilted satin …

In my adult life, the burden of Chronic Fatigue Syndrome sometimes weighs heavy. I began to visualize myself floating on a pink raft whenever I was resting and felt some relief when I did that. Soon, a real pink blow-up raft manifested itself without any effort from me.

I need it more than the pink diary … with the lock broken off … or even the pink suede purse … I stole from my sister …

I spotted it in the cellar of a house that my son and his new wife were considering buying and were ready to make an offer on. I couldn’t believe what I was seeing. I wanted to touch it. Take a picture of it. But that seemed weird, and I wasn’t sure how to explain my interest in a pink raft to the others.

I want you to hold me still … while I lie on my back … and float like a petal …

My son’s wife has a little girl. She and I got restless when her mother and step-dad were at the kitchen table with the realtor, going over financial figures and house buying details, so we went outside to explore.

like a baby in a cradle … not left to sink or swim …

From the yard I could see the pink blow-up raft through the cellar window. Bravely, I went back inside to get a closer look. My little friend followed. It was she who snapped the photo of me hesitantly holding onto the raft. She wanted her picture taken with it too. She posed with her arms crossed, her legs slightly open, leaning to one side, as if she OWNED that raft.

“Wait a minute,” I said to her. “I want another picture of me with the raft.” Mimicking her self-confident attitude and stance, I let my shyness drop away. “I can have a pink raft too if I want one,” my new pose seemed to say.

Posted by Colleen at 10:50 PM | Permalink | Comments (30)

“I have never liked working. To me a job is an invasion of privacy.” - Danny McGoorty, Irish pool player

My father wanted me to be a doctor, but I had a secret romantic idea that I wanted to be a peddler, either that or join the Peace Corp.

The following entry was inspired by my niece, who recently posted a list of her jobs on her blog. Family members on the Love-Link, the group e-mail that was started when my brother Dan was in the hospital 5 years ago, have been doing the same.

Because of my issues with Chronic Fatigue, which started during my 6 year tenure as a day care teacher, my jobs have been mostly part-time and often untraditional. They are listed in order from the time I was a teenager up to the present and do include a little peddling and work in human services.

1. Babysitting
2. Helping our neighbor Mrs. Brody open her beach house for the summer. I washed dishes and sometimes slept over because she was elderly and didn’t like to be alone.
3. Washing dishes at the Stonecrest Nursing Home.
4. Hat check girl at the Surf Ballroom in my hometown of Hull, Massachusetts. Sonny and Cher played there.
5. Sales person at an upscale woman’s clothing boutique in Boston. I smoked pot with my bosses and sometimes did live-mannequin modeling in the window.
6. Private duty nurse for an elderly man who had no legs. I was actually a nurse’s assistant but worked the night shift on my own. I ate a lot of chocolate chip cookies and watched old movies. I was recovering from a major depression/anxiety disorder at the time.
7. Worked in a factory with my sister Sherry (now an RN), who I also shared an apartment with. We called this period our “Laverne and Shirley” days. We painted fire alarms red.
8. Day care teacher at South Shore Day Care. I got this job via the un-employment office after telling them that I wanted to work with the blind or the mentally handicapped. I started as an aide, got accredited, and worked my way up to a teacher.
9. Full-time Mom. The highlight of my life.
10. Took an elderly man shopping once a week.
11. Freelance writer. The first piece I sold was to Mothering Magazine.
12. I worked in a pre-school nursery at a church and a gym, never went to the church or worked out at the gym.
13. My life as a waitress lasted only 1 week. You couldn’t pay me …
14. I was a night watchman at the B-Real Ethanol Plant in Floyd. I watched the moon more than anything.
15. Sales person at Seeds of Light, a bead shop in Blacksburg. I did jewelry repairs and ordered the store’s books. More on that HERE. and HERE
16. Jeweler. I peddled my wares in shops from Floyd to the Caribbean and was a Grateful Dead parking lot vendor.
17. Foster care provider for an individual who was blind and mentally handicapped. (See # 8) for 9 years.
18. Author of The Jim and Dan Stories, blogger, and freelance writer and poet who occasionally gets paid.

Addendum: I also sold peppers to the Harvest Moon food store one year when I had a surplus crop. I was hired as a poetry tutor for a child, and worked behind the scenes with kids for a kid TV show pilot briefly. I once auditioned for a TV commercial and modeled ski wear in a fashion show.

Post notes: The first photo is of me and my son Dylan and was taken around 1990 at a Grateful Dead Show. The second one is of me doing potato print art with kids at South Shore daycare in 1977. Feel free to leave a list of some of your jobs in a comment.

Posted by Colleen at 9:49 AM | Permalink | Comments (21)

I sit when others are standing…I lay when they sit...I walk when others are running…I stop while they keep going ~ Colleen

When you have a health disorder that doesn’t fit into a category of known symptoms, that can’t be detected through an x-ray or blood test, and that has no name, the medical profession will likely tell you that your problem is psychosomatic. In other words, ‘it’s all in your head.’

…My secret symptom of modern perversion…like Agent Orange or Gulf War Syndrome…IT’S ALL IN YOUR HEAD…Tell that to the babies with no limbs…to the vaccine injured kids…Tell that to the mercury in my mouth…or the hormone fed antibiotic filled mad cows…

I tend not to have great success resolving my health issues by way of doctors. I don’t like the fact that the side-effects of so many medical treatments are worse than the disease they are treating. But when I contracted Chronic Fatigue Syndrome (CFS) in the late 1970s, I was so alarmed to feel normal one day and then have to will myself to move the next, that I sought out a doctor and had some tests done. I didn’t know why I felt like I had a constant low grade flu, and the doctors I consulted didn’t know either. The term CFS hadn’t come into existence yet, and wouldn’t until the mid 1980s. There was nothing wrong with me, I was told.

I took matters into my own hands and began a long journey of research and trial and error to heal myself from what I first called “my low energy” problem. I could fill pages with the list of (mostly alternative) therapies, diets, and regiments that I’ve tried over the years. Everything helped, but nothing cured. And not only did I have to deal with living in a chronic compromised state of health, I had to explain to others why I couldn’t work full-time and why I had to meter out my activities. If I was going to be stuck with a disorder, I found myself wishing it was a more credible or visible one so that I wouldn’t be misunderstood or mistaken for being lazy.

It’s all in your head? Tell that to the Martin Luther King’s family…Tell it to the tribes downwind…or my overburdened immune system…Our bed is made…now we’re surely going to lie in it…and take our medicine for somebody’s profit…

Last week a comprehensive government-funded study confirmed that there is a biological basis for CFS. One of the leading scientist’s involved, who called the results “ground breaking,” said, “People with CFS are as impaired, as a whole, as people with MS, as people with AIDS, as people undergoing chemotherapy for cancer.”

According to the Associate Press, “Chronic Fatigue Syndrome appears to result from something in people’s genetic makeup that reduces their ability to deal with physical and psychological stress.” Researchers found that certain genetic sequence variations in five stress-moderating genes showed up consistently in chronic fatigue patients. They also found 5 subtypes of the syndrome. Some reports acknowledged that the study appears to confirm the existing idea that people develop CFS when events such as infections, injury and trauma disrupt the hypothalamic-pituitary adrenal axis, which is activated by physical and emotional stress.

I’m pleased that the medical establishment is beginning to seriously study a disorder that affects a known one million people in the U.S., mostly women (most CFS sufferers go undiagnosed). But after over 25 years of dealing with my own version of this limitation, I have finally stopped waiting for a cure. While I welcome more understanding into CFS, my focus is management, improvement, and acceptance.

I think of CFS as a leash that restricts my range of full movement. It’s a leash that I’m committed to increasing the length of, as much as I’m able to.

Posted by Colleen at 8:49 AM | Permalink | Comments (18)

There are two kinds of gratitude: The sudden kind we feel for what we take; and the larger kind we feel for what we give.” ~ E. A. Robinson

I’ve been trying to resolve the difference between passion and obsession. There’s something exciting about doing what I love (in my case writing) until I drop off to sleep at night and then waking up the next day and getting right back into it while still in my bathrobe. But what about breakfast? My meditation practice? What about relationships and social interactions?

I’ve always been drawn to solitude. When I first read the following statement by author Christina Nealson years ago, it became a favorite quote and a goal: I must have days, lots of them where nothing is planned, where the rhythm is set free to improvise a beat that suits the soul.

Growing up as one of nine children, raising two sons, and then providing foster care for an individual with disabilities for the last 8 years, I’ve always had lots of interactive activity around me, as well as a built in structure to my days. Now that my sons are grown, and I’m only “working for pay” a couple of weekends a month, I’m getting my dream come true: time to myself. It’s mostly a good thing, but it also seems that the more time I get to myself, the more time I want, and if I allow my “nutty professor tendencies” to go to extremes, solitude becomes isolation.

From what I can tell, what passion and obsession have in common is that with both you “lose yourself” in them. According to the teachings of my mediation practice, losing one’s “self” is a good thing in a similar way that giving is ultimately more rewarding than receiving. In my own experience, I know that when I drop down into a deeper state of consciousness during meditation, I lose my sense of self, which results in a tangible feeling of peace.

But too much of a good thing can be a bad thing, and losing oneself in solitude can also be viewed as being selfishly “self-absorbed. Writing is a solitary and sedentary activity. When overdone, the isolation it creates can become a breeding ground for insecurity.

“When you lose yourself at the expense of others, I think that’s when passion becomes an obsession” was how one of my Satsang friends put it when I raised the question at recent evening Satsang.

When I find myself getting bogged down with the world that exists in my mind, sometimes going for a walk or working in the garden can bring me back into balance. Other times, something more is called for.

Because interactions with others are not built into my life anymore, I find that I have to choose to make them happen, and now that I have the luxury to discover more of who I really am, here’s what I’m learning:

I’m not a leader or a follower. I’m a party of one. But just as a socially outgoing person still needs time alone, so does a loner need other people. When I nudge myself to do what is out of character for me, I benefit from it more than anyone else. Making soup to bring to a friend who just had a tooth pulled, picking flowers for a new neighbor, picking up the phone and making the call I’ve been putting off to see how someone is are all activities that make me feel better because the best remedy for what ever ails you is to do something for someone else. We’re wired that way…for human contact…and to serve each other.

What a master plan.

Posted by Colleen at 8:28 AM | Permalink | Comments (15)

AKA: Landing
Like a kite swept up in the sea air, I was riding high during the week that my husband and I spent camping along the ocean on Hunting Island, South Carolina. Mid-week, I commented to him how much better I feel at the ocean. No stress. No afternoon naps, almost as if the remnant of Chronic Fatigue that I still struggle with was in remission.

After a week of waking with the sunrise and a view of the ocean from our camper window, it was time to head for the highway that would eventually lead us back home to the mountains. But the further we got away from the beach the more deflated I began to feel. Within a half and hour of leaving, my kite crashed. By the time we passed a strip mall of fast food stores and motels, and even though it was only 11 a.m., I slumped down in my seat and fell asleep.

“I feel like dead weight,” I said to my husband when I woke up. “I guess I’m no longer being buoyed up by all those health-giving negative ions that come from the ocean.”

“You’re getting out of your element. You grew up surrounded by the ocean and bay. It’s in your blood,” he answered.

“It’s like eating protein all week and then eating a meal full of all carbs,” I continued to complain and wondered if I hadn’t hit on something related to a physiological explanation as to why people have a hard time readjusting after a vacation and sometimes feel depressed.

Although, my energy is fragile, like the canary in the mine who feels the effect of changes sooner than others, my reaction to leaving the ocean caught me off guard. I was fulfilled by our week of camping and content to go home. My reaction was shocking to me because it was clearly physical.

Being away from the ocean left me feeling like a fish out of water. But aren’t we all? The umbilical cord to the primordial sea of life had been cut. It was time to learn to breathe on my own again.

Posted by Colleen at 9:11 PM | Permalink | Comments (14)

I used to think something was wrong with me, but now I just accept it. I’m not your hostess type. Burning pots on the stove and letting the housework go while being distracted by poetry is something I’ve always been upfront about and even confessed to in my wedding vows when my husband and I got married ten years ago on the Blue Ridge Parkway. My close friends know that if I attend a potluck, I’m more likely to bring a bag of corn chips than a homemade casserole or a pie. But I make it up to them with my yearly Christmas Eve Open House. With one fell swoop and a platter full of cookies, I get my hosting out of the way for the year.

Even so, a date for dinner with my friend Juniper and her boyfriend was recently circled on my calendar, and because I’ve eaten at her house over a dozen times and she’s never eaten at mine, I agreed to host the get-together.

Juniper knows that my lack of hostess skills is complicated by the fact that I manage a longstanding variety of Chronic Fatigue Syndrome and can easily become depleted of energy if I do too much. Because she was my employer when I worked part time at her Blacksburg bead shop years ago, she knows my frailties and tendencies. Back in those days, she learned not to be shocked when she occasionally found me stretched out on the floor in the back room, desperate for rest. She was always supportive and not only did she get used to the post-it poetry I tapped to cash register, she looked forward to see what I would post next.

I cooked up a skillet full of venison spaghetti sauce and had everything ready to warm up, knowing that I can’t cook and visit with friends at the same time; another idiosyncrasy that complicates my ability to be a good host. Of course a rest was scheduled into the preparations after cleaning the kitchen and whether or not it resulted in a nap.

As the dinner hour drew closer, I took off my black merino wool long johns and put on some dressier pants (also black). I called my husband, who is more socially skilled than I am, to make sure he wasn’t going to be late. Then, I lit a candle for ambiance and got out my notebook to write this all down.

The truth is, even though it always turns out better than I think it will; I’d rather write about hosting a dinner than to actually do it.

Post Note: We had a wonderful evening. It was worth every bit of preparation! The photo is of Juniper and I, taken at the Saddle Overlook on the Blue Ridge Parkway where my husband and I were married.

Posted by Colleen at 8:26 AM | Permalink | Comments (18)

I sit when others are standing…I lay when they sit…Arriving last and leaving first…I lean on walls to look less suspicious…I walk when others are running…I stop when they keep going… ~ Colleen

My husband, Joe, headed down to Roanoke Sunday morning with a young man that he’s taken under his wing, to hear Bo Lozoff speak at the Unitarian Universalist Church. He has met Bo, author and founder of The Prison Ashram Project, a couple of times before and considers him to be a mentor. I wanted to meet Bo too. I read his newsletter and have a deep respect for the service work he does. Not only does he teach meditation practice to prison inmates, but he is a compelling speaker, an accomplished musician, and he and his wife head up “The Human Kindness Foundation” in North Carolina, where they live.

I reminded my husband how hard it is to get me to do anything first thing in the morning, especially if church is involved (having already filled my church quota as a girl). But the real reason I didn’t go to meet Bo was that I had already made plans with my women friends to hear a Celtic Band that was playing right here in Floyd that evening. Due to the fact that I’m in ongoing recovery from Chronic Fatigue, I can’t do two events in one day. I suffer from sensory overload much quicker than other people do. If I got out in the daytime, I generally don’t have enough energy to go out at night, and if I am going out at night, I need to precede it with a low key day with the right combination of food and rest.

Joe came home from his long day in Roanoke just as I was getting ready to go out, and his enthusiasm was infectious. As he raved about Bo’s talk, of which the theme was “Going Deeper,” I began to feel the sense of a missed opportunity and doubted that I had made the right choice; the Celtic band over Bo’s talk.

“It’s like choosing one of my sons over the other,” I complained to Joe, feeling bad about my own limitations, just as a horn beeped outside, signaling that my ride had arrived. To be continued…

Posted by Colleen at 8:42 AM | Permalink | Comments (11)

AKA: My “Liar Liar” contest backfired!
I recently posted 4 things about myself, one of which was a lie, and asked readers to guess which one. Most everyone picked “I went to Woodstock” as the lie. And they were right, but not right for the right reasons. They thought I wasn’t old enough to have gone to Woodstock, but I was! Here’s the story:

I almost went to Woodstock. I planned to go. I was old enough, at 19 years old. My brother Jimmy, 4 years older than me, went. I had friends who were going and who pleaded with me to go too. I imagine that they were waiting outside in a car beeping the horn, but I wouldn’t come out. Although, I wasn’t even aware of the word “depression” (we called it a “nervous breakdown” back then), I was clinically depressed at the time.

There were no decent treatments or medications for major depression disorder back then. Nothing terrible had happened to cause it. I just woke up one day with a chemical imbalance. My hands shook. I couldn’t concentrate or sleep. I felt painfully self- conscious, as if I had forgotten everything I ever knew how to do, and nothing…absolutely nothing had even one ounce of pleasure to it.

Years later, I did some medical and genealogy research in an attempt to understand what had happened to me and came to suspect that my depression was related to the thyroid gland and was something I was genetically pre-disposed to. It eventually ran its course (something in-between a year and two) and caused me to study nutrition and to improve my own. Ultimately, suffering through a severe depression was a rude awakening that shaped me, deepened me, and made me more compassionate of others.

I hate that I have had to spend my adult life saying “I almost went to Woodstock,” the cultural event of my generation. But I think it was probably a good idea that I missed it. Even considering that I could have seen Janis Joplin sing onstage if I went, as someone depressed at the time, I don’t think I could have handled all the rain, mud, and the crowds that Woodstock was famous for.

As for the 3 true statements:

~ I rode on an elephant at a Renaissance Festival in Texas.
~ I hiked part of the Appalachian Trail…4 days worth.
~ In the 70s I worked behind the scenes on a short-lived Boston Children’s TV show, managing the children when they were offstage. Sometimes I (or my hands) could be seen on TV setting up projects and delivering supplies. I also was in the audience of “Candlepins for Cash.” My mother was a bowling contestant on the show and all nine of her kids went to support her, back in the days of Major Mudd, another Boston based 1970s TV show.

The last time I played this "pick out the lie" game only a couple guessed the right answer, but this time the majority guessed right. I’ll have to make it harder next time. Here are the winners. Thanks to everyone for playing!
A Revision , Melange, Jo(e)’s Place , Life in Mayberry , Colleen’s Corner, Nkki-ann,Hurricane Country , Musings from the Underground , Blue Stocking

Posted by Colleen at 12:19 AM | Permalink | Comments (20)

AKA: How Green is Your Grass? After my recent post, a day in my life in 25 easy steps (a description of my current typical day), I received a couple of comments that caused me to suspect that some readers might have the impression that my life is idyllic. I think things can sound better in print than they really are, in the same way that a photograph can look “picture perfect,” but it only captures an instant in time, or an aspect of a whole story.

I’ve been thinking a lot lately (even before the above mentioned post) how other people’s lives often look better from afar than they usually actually are. Sort of how watching a couple paddling in a canoe along a shimmering lake on a sunny day can look so peaceful and make you feel that you wish you had a canoe too. But if you were actually in the canoe, the reality might be more like this: Your arms hurt from rowing. It’s hot and sticky. Mosquitoes are biting you.

It’s true that because my grown sons are out on their own, and because I recently retired from full-time foster care (I’m currently doing respite foster care for others a couple of weekends a month.), I have more time for writing and gardening. I did go on a month long sabbatical this summer to my hometown peninsula in Massachusetts, and I have been camping on the weekends with my husband in our palomino camper.

I do have a good life, one full of many blessings. But there’s something unmentioned underlying the above scenario that makes it less than ideal, which is this: as a recovering Chronic Fatigue sufferer, it’s part of my ongoing therapy to keep my life as simple as possible. While I enjoy my life, I also have to meter out my activities; I can’t deal with high stress, and I haven’t been able to hold a full time job outside the home since I was in my mid-20s.

I keep thinking I’m going to write more about Chronic Fatigue Syndrome (which I believe is really a symptom, as opposed to a disease and one that has almost as many causes as there are people who have it) because there might be others out there who struggle with it worse than I do who would like to hear my story. But the truth is I don’t write that much about it because it’s really not all that interesting, and I don’t want to give energy to it. I don’t tend to write about the maggots in my compost bucket either.

Whether one has a bad back, a bad marriage, a disabled child, an addiction, or whatever, I think we can assume that we all carry some personal burdens. And hopefully, we know we can decide to make the best of life regardless of them.

Photo: Skye’s shoes. I knew this photo would come in handy someday.

Posted by Colleen at 9:29 AM | Permalink | Comments (13)

Screwing one’s head on right

I’ve been dealing with something in the Chronic Fatigue Syndrome family for the past 25 years, although, you would hardly know it. I can do everything anyone else can, just less of it. I get “sensory overload” if I don’t carefully space out my activities, and if I overdo it and get in a deficit, I don’t bounce back quickly.

I recently said to my husband, after a particularly busy day, “I just can’t think straight!” The next morning I woke up with my first ever experience of VERTIGO. It reminded me of the time I paid $35 to ride on a glass bottom boat in the Florida Keys, only to get seasick and throw-up.

Fortunately, vertigo is more treatable than Chronic Fatigue, or tinnititus, which I also have to a small degree – or should I say “decibel.” The most common cause of vertigo is from crystallized calcium deposits in the inner ear canal. Prescribed exercises to dislodge the deposits have a high success rate; although when I do them, I feel like the guy in the above photo.

The photo came from my son. I convinced him to give it to me because I liked it so much. I wanted to take some similar shots myself, and I knew I wouldn’t remember the poses without the photo to remind me. Little did I know what personal significance the image would take on.

It’s been a week since vertigo knocked me for a loop. It’s improved, but hasn’t gone away. Even so, it didn’t stop me from dancing to my favorite local band, Foundation Stone, in town this weekend (although I wouldn’t attempt contra dancing now). At the dance, a girlfriend approached me, offering tissue paper to plug into my ears, which I accepted for the first time.

At a certain age loud music sounds louder, our eyes can’t read fine print, and some people become dizzy with vertigo, which makes me wonder and have to ask, “Didn’t we drink alcohol when we were young to feel like just like this?”

Posted by Colleen at 8:19 AM | Permalink | Comments (5)

Since my mid-twenties I have struggled with something – for lack of a better explanation – in the Chronic Fatigue Syndrome family. My current Chinese Medicine Practitioner does not approve of the term. The emphasis on “chronic” might enable a self-fulfilling prophecy, he suggests. He might refer to my problem as “a yin deficiency”…or maybe cold kidneys?

I’ve spent years describing what it’s like and wishing others could get inside my body to see what I have to endure. My sister, Kathy, has tinnitus. Others I know have chronic back pain. With any of these disorders, the key to dealing with them is managing them; not being personally identified with the symptoms, respecting your limitations, and sometime over-riding your symptoms…pushing yourself a little to do the things you love that help you take your mind off it.

Sitting in the office of my Chinese Medicine Practitioner, whose practices include cranial sacrum energy work, acupuncture, bone setting, and herbal infusions, a newcomer and acquaintance inquired, “You’ve been coming for a while. So, do you feel better?”

I laughed. “You know,” I answered, “you might come here to cure fatigue and be cured of mistrust instead. I can’t be attached to what needs to happen first with healing.” I added, “For me the cure is not the goal – but progress is!” She understood, and I was used to her type of question.

For many years I called my condition “my low energy problem” because the term Chronic Fatigue (which is actually an immune dysfunction) hadn’t been coined yet, and after it had been named, I didn’t relate to the bedridden people who had it. “I’m not bedridden, but I surely know the bed,” I would explain to others.

One of the symptoms of Chronic Fatigue is something I used to call “mini-fevers.” This is when you don’t have an actual “fever” but your body temperature does rise slightly, and you feel achy-all-over like you could be getting the flu (but you never quite do). In the past couple of years I have learned that my mini-fevers have another name. For eons the Chinese have called them “tidal fevers” and they tend to come more in the spring (usually in the afternoon) and relate to heat rising in the body (but then getting stuck)…sort of the way sap rises in plants getting ready to bud at springtime.

I spent most of my life thinking the term “spring fever” referred to “restlessness” or maybe to being “twiterpaited” – a word from the movie, Bambi, which meant an interest in dating and mating (hardly). But now I know different. My spring fevers are back and that old song from the 60s, “You Give Me Fever,” is running around in my head. I guess I should be thankful that I don’t have the flu like other people I know.

First Thaw

Pale as spring grass
beneath un-raked leaves
my skin under clothes
is wilted and withered

My shivering flesh
is the first flower exposed
at the first sign of thaw
when green rumors come true

Posted by Colleen at 6:38 AM | Permalink | Comments (1)