Hard Lessons

To paraphrase a Bruce Springsteen song, life has been giving me some hard lessons lately, about pain, loss, disability and hope. Years of chronic pain, my mother's death, my hearing impairment and other serious medical problems have sorely tested me. When I finally found a doctor who took my pain seriously, he asked me why I had checked "suicidal thoughts" on my new patient questionnaire. I told him, "I have 30 years ahead of me if I live as long as my mother did. I refuse to live in pain for another 30 years."

In all that I've learned and written since then, the most surprising discovery has been my ability to remain optimistic about my life and my future. If you hear despair, anger, frustration and fear in what I post here, please don't turn away. All is not dark, and eventually a glimmer of hope will light the path ahead.

Saturday, November 30, 2013

Personal safety

Earlier this year, I had a sort of epiphany. I realized that at least some of my personal and work struggles might be the result of my insistence that my way is the right way. My refusal to consider anything else, and my indignation when anyone challenged that belief, had been using up a ridiculous amount of my ever-dwindling time and energy. So as hard as this was for me, I pledged to myself that I would stop trying to prove a point that meant nothing to anyone but me. I would stop fighting with anyone who said, "But what about this?" And within a few weeks, I realized that my life (personal and work) life was going better. A lot better.

That improvement has kept me going since then. I won't claim that I've been a perfect angel. As Popeye said, "I y'am what I y'am." but I'm so much better off that I wish I'd figured it all out sooner. It's possible that I had to go through the hard stuff no matter what, but since I only have today to live, and maybe tomorrow, I'm just going to go on.

But...I also wonder how I came to be so ridiculously dedicated to advancing and protecting my own needs and desires after spending the first few decades of my life letting other people walk all over me. Perhaps that's the answer. I may have been overreacting to those earlier experiences. Was that wrong of me? Maybe, but maybe not.

I was thinking about all this as I drove home today after working hard to be sweet and cheery all day with coworkers and customers who were not being sweet and cheery with me. Sometimes I get a sly sort of "screw you" satisfaction out of that, and sometimes I just don't have the energy for it, but these days that sweetness and cheeriness doesn't feel so much like I'm allowing myself to be violated.

Which may be, at the end of the day, what this lesson is all about. As I was driving along through the pastoral beauty of our rural if impoverished landscape, I suddenly remembered two childhood incidents, and those memories reminded me that I'm not the one who failed to protect me from violation. In fact, I fought against it, but the adults around me chose to ignore it, probably because dealing with it was too big a job when they were already dealing with a Really Big Problem: my brother.

So, about the two memories of my brother's assaults that I reported to those adults (my parents). Memories that I usually keep in a mental cupboard with a big padlock on it. The adults pooh-poohed my reports. I was being histrionic, I was exaggerating, I was confabulating. Even when there was physical evidence to the contrary.

One time when we were alone in the house after school. my brother became furious with me for something I don't even remember and chased me into the front hallway. Just in time, I locked myself into the downstairs powder room. For what seemed like forever, K. screamed and pounded on the door.  I don't remember exactly what happened next, but I do recall that at some point, my parents wanted to know why I'd allowed him to kick a huge hole in the wall between the hallway and the powder room. I was astonished when I saw that hole. I might have gone on wondering if I'd hallucinated it, but when my parents divorced and sold the house, there was quite a production over getting someone in to repair it so it wouldn't deter prospective buyers.

The other time, my brother cornered me in the kitchen when we were again alone in the house (as usual, Dad was off on some business matter and Mom was working her 2nd job). K. kept grabbing at my breasts and went into a rage when I refused to bare them to him, so I ran out of the kitchen and up the stairs towards my bedroom. When I turned left into my room, I saw that he was holding a kitchen knife. I dove into my room and locked it behind me. With babysitting money, I'd bought and installed 2 slide-bolt locks on the inside of the door, so I was fairly safe then (though I have to wonder why my parents allowed me to keep those locks - what if the house had caught on fire and trapped me in there?). I heard him hammering on the door and screaming at me, so I crawled into my closet, shut that door, and waited for everything to be quiet (which it rarely was in that house). It was only later when ventured downstairs to see if any dinner was on offer (never guaranteed after hours of parental drinking) that I learned what K. had done while I was shut in my closet. He had stabbed the knife several times into the hollow-core door. Again, my account of this incident was discounted. I must have done something terrible to make K. do something like that. It was my fault that the door had to be replaced.

Well, my mental cupboard is full of stories like that. I guess the reason the stories (not just stories, but the memories of true events) came back to me today is that they show how my personal safety and integrity were so severely disregarded at a time when a minor child ought to be able to rely on her parents for protection. At least inside her own home, in the company of her own brother. So those events may help account for why my personal safety and integrity are of such paramount importance to me now, at a time when an aging woman ought to be able to feel safe in her own life.

Monday, September 9, 2013

Why, God? Just tell me why.

A dear friend of mine is dealing with a serious health problem. When she talks about it, I can feel the pain and panic in her voice. It's all too familiar to me.
I don't know how to fix it for her any more than I know how to fix my own health problems. I feel extremely fortunate to have achieved the level of functioning I have now. And even now, the specters of more pain and more disabilities lurk around every corner.
I wish I could wave my magic wand over my friend. I hate to see her in so much distress. She is such a good and smart and capable and funny and special person. It's just not fair that she should have to carry these  complicated and heavy emotional and psychological and physical burdens. Sometimes I want to ask God, "Why are you letting this happen? Just tell me why."

Tuesday, August 27, 2013

The Healing Process

Many years ago, a mental health provider advised me to "trust the healing process." In other words, go with the flow. That advice made me want to scream, and it still annoys me. I've been trying to analyze and solve my own and other peoples' problems, and second guessing what other people are thinking and what they want from me, for about 30 years. It hasn't worked well for me. I need a road map for the healing journey. I want it all spelled out, chapter and verse, with detailed instructions and guaranteed results. Although I do know that one definition of insanity is doing the same thing over and over and expecting different results, I still struggle with this matter of trust. I suspect that this is one of the lessons God wants me to learn in this life. The problem is, I've already used up 60 years of that life. The fewer days I have left, the more precious they become. I clearly need to work harder on this. Or maybe not work on it all...

Wednesday, July 24, 2013


Until I turned 50, I never had a sense of my own mortality. My elderly mother had been reminding me that she wasn’t going to live forever, but somehow I thought that she and I were both immortal despite the fact that I was morbidly obese and troubled by a host of health problems. I had undergone more surgeries, medical procedures and treatments, and taken more prescription medication, than my mother had in her entire life.

In the years that followed that milestone birthday, I lost a lot: my job, my 90-year-old mother, 100 pounds and my old lifestyle. At the same time, I learned there is truth in the old saying, “You’re only as old as you feel.” That truth wasn’t always rejuvenating. I often felt lost and confused. I had attained an age that was unimaginable to me as a 20-year-old. Other than perfunctory contributions to 401K and IRA funds, as a young woman I had made no plans for my middle and later years. That might be just as well, because in truth, my expectations for myself at age 20 were far smaller than my expectations are now, as I hover on the edge of my 60th birthday.

A few years ago I told a young coworker that I was 56 years old. Now I don’t remember why I shared that information with him, but I hope I never forget Garrett’s response: “You are not 56!”

I offered to show him my driver’s license. He shook his head and said, “You don’t act like you’re 56.”

Although for much of my life my mother had admonished me to act my age, I took Garrett’s comment as a compliment. One benefit of being 50+ is that I care a lot less about what other people think of me, not because I want to act outrageously but because I want to be true to myself, because I trust myself enough now to worry less about the mistakes I might make, and because I know I will learn from them as they happen.

Friends, family, and business associates who’ve known me for 10, 20, 30 years tell me they’ve been surprised by my new lifestyle. I shut the door on a high-paying, high-stress, mostly sedentary business career that sent me all over the globe as I worked 70- to 80-hour weeks and ate myself into obesity. I joined a fitness center; took a low-paying, lower-stress, part-time retail job; wrote and published five books; and recently joined the board of directors of OutsideIN, a new non-profit business that provides jobs and training for chronically unemployed workers who rely heavily on public resources for their survival.

My non-profit work pays me not in monetary income but in what Mom used to call spiritual income. Although we welcome volunteers of any age, I believe I have far more to offer now, at 50+, than I did in my youth. It’s work that draws on all my past work experience and allows me to use my unique talents, some of which had lain dormant for decades. It also requires me to stretch and learn new things. I’m especially happy about that because I believe that the moment we stop learning is the moment we’re ready to go home forever.

The photo below shows me at the fitness studio wearing a favorite t-shirt. Its imprint describes my new identity at 50+ years. One of the most surprising things about being 50+ is that I’ve evolved from being a fearful, pessimistic Miss Rainy Day, to an upbeat, optimistic Little Miss Sunshine. Even as the aging process challenges me, often slows me, and sometimes pains me, I wake up every morning eager for the new day. Perhaps time is becoming more precious to me as my fund of new days dwindles, but for now I’m going to go on believing that I’m immortal.

Tuesday, June 25, 2013

A Civil Tongue

Mom's response to an argumentative child or a growling dog was, "Keep a civil tongue in your head."  Proper and civil language usage was of paramount importance to her. She would tolerate my career choice of, say, streetwalker, more easily than my desecration of the English language (that's not to say she'd be happy about the career choice, of course).

When I left home at 17 and moved to Great Britain, I sent long letters (written in the combination of English and French that I favored at the time) home describing my new life there.  Mom saved them all and gave them back to me 20 years later with the instruction to turn them into a book.  I dug into the box of letters eagerly, hoping for a glimpse of a younger, more idealistic Jean, and discovered that Mom had corrected my spelling and grammar with her English teacher's red pen.  I would have been offended by that at 17, but at 37, I had to laugh.

At other times, though, Mom's own civil but razor sharp tongue made me wince.  While she was teaching a good-natured friend of mine to sew, I cringed to hear her say, "Don't ask stupid questions.  I only want to hear intelligent ones."

Decades later, I too often open my mouth and hear my mother’s voice come out of it, shooting words like arrows straight to the heart of the target.

Friday, May 10, 2013

Mother's Day

Mother's Day is 2 days away, and I have very mixed feelings about that.

I'm on my way north to make almost-Mother's-Day visits with my mom's college roommate in CT and her sister in NH, and I'm happy about that, but most of the time I feel bereft because both my parents have passed away and I'm an orphan of sorts.

I spent some time this morning window-shopping in historic Winchester, VA's pedestrian mall. Lots of interesting things to see and perhaps buy, especially in a shop featuring gifts, jewelry and accessories made by local artists. I made myself walk out of there because I feel too poor (financially, anyway) to make a single purchase in a shop like that.

I bought myself a coffee and sat down on an iron park bench to enjoy the mild weather and think carefully about what nifty gifty I could buy as a souvenir of this trip. Almost immediately, an elderly, almost-blind, one-legged woman in a motorized cart zoomed up to me and we began to chat. Like so many of the old ladies I deal with at work, Miss Elizabeth is lonely and feels neglected by her family and erstwhile friends, who rarely find the time to visit her. She was vehemently against a Mother's Day get together. She hates the way families take out their old mothers to restaurants and show them off for a few hours before taking them back to whatever lonely place they spend their solitary days.

That's a sad story to hear, but when Miss Elizabeth and I parted company, I shook her hand and told her she had made my day. Not only does she share my own mother's Christian name, she is also a feisty and interesting person. I have to believe that God sent me to sit on that bench so that I could appreciate something I might otherwise have missed in my pursuit of worldly goods. I can't afford to buy $100 worth of pretty handmade jewelry, but I got a priceless Mother's Day gift instead. I got to connect with my own mom via Miss Elizabeth Marshall.

The funny part of this story is that I walked around the block in order to take a different route back to my hotel, and ran into Miss Elizabeth again. She was sitting in the sun smoking a cigarette. I laughed and said, "I can't get away from you!", squeezed her hand and enjoyed the big smile on her face.

Saturday, April 6, 2013


I called my maternal grandmother "Dranny", apparently because I couldn't make the correct "Gr" sound when I was a tiny tot. This set a precedent not only for my younger brother but for the whole family. A family that was well-accustomed to phonetic naming long before I arrived. My mother's younger sister is named Frances, but because Mom couldn't produce the "Fr" sound, my favorite aunt became "Tantis" and later "Tanis". She's 90 years old now and still answers to Tanis. A person and a name I love so well that I wish I'd had a daughter so I could name her Tanis.

But back to Dranny. One of my earlier memories of her is watching her rise from a seated position as she grimaced and groaned, "I'm so lame."

That's not lame in its modern sense of being useless and ineffectual, though there are elements of that sense in what Dranny said. What she meant was, "I'm so lame, so stiff, so painful."

Sad to say, at age 59, I now understand what Dranny was saying. It's important to know that she worked as a private duty nurse into her late 70's, taking care of patients she called old ladies even when she was in some senses an old lady herself. Dranny wasn't a cry baby. Well, she might have cried, but she did it while she was soldiering on in a way that would be incomprehensible in a time when able-bodied people clamor for disability income while doing one-armed push-ups on the sidewalk outside the Social Security office.

The saddest part is that I struggle so much to push my aging body through things that seemed easy to me only 5 years ago. When I get up after sitting for more than 10-15 minutes, I hurt whether I move slowly or quickly. When I bend or stoop to pick something up off the floor, rising again is a struggle because it makes me dizzy and it makes my whole body strain. I can't imagine how I would do that kind of thing now if I hadn't lost 98 pounds since September 2007. For the first time I understand why it took my mother forever to climb up the 3 shallow steps to our porch and one more step into the house. I'm lame. I hurt. As I told a friend the other day, I feel that I'm losing ground every single day. And I'm only 59 years old. I exercise for 45 minutes a day, 5 days a week, and I work a job that requires me to move and forbids me to sit for 5 or more hours at a time. But every day when my hips complain about moves that were easy a year ago, I have to choke back tears. I wasted decades on obesity and immobility. Now I'm a healthy weight, but much of the time I don't feel healthy. I yearn to make up for lost time, but I'm not sure how I'll do that now. Because I feel lame, and I fear that I am lame.

Saturday, March 23, 2013


At the moment, we have 11 dogs and 3 cats. Nine of those dogs spend time inside the house; the others (who are just too big) are outside dogs. The oldest of them is our French bulldog, Georgie. He is 13 years old and aging fast. He often seems lost and confused (and no wonder, with so many other dogs coming and going). He is incontinent most of the time. He knows he needs to go outside to pee, but the urine leaks out as he hurries to the door. Lately he has lost control of his bowels. The whole incontinence thing is hard to deal with. I suppose we could put doggy diapers on him (assuming he would cooperate and that the other dogs would leave the diapers alone). It may yet come to that.

One of the hardest things for me is that Georgie's incontinence reminds me of Mom's. Like all the women on her side of the family, she had always had an irritable, small-capacity bladder. It wasn't altogether surprising when total urinary incontinence came upon her. The harder part, though, was bowel incontinence.

Mom had been this strong, capable person all my life. Hard-working, controlling, no-nonsense. One day when she and I were "visiting" (her listening to me talk about the dogs; me listening to her talk about the Dutch girl in an old painting on her wall, a girl with whom Mom said she had walked the beach somewhere), she suddenly said, "I think I just shit myself."

The surprised expression on Georgie's face when his bowels let go reminds me of the expression on Mom's face when she made that announcement. I can't say that Mom's loss of control of her bowels was any easier or harder on me than her loss of control of her mind. It's still inconceivable that such a super-competent person should become so lost, helpless and demented. And I wonder if the same fate awaits me.

Friday, March 8, 2013


One of my disabilities (or life’s challenges, if you prefer) is moderate to severe hearing loss in both ears. The problem was noted in a hearing test I took in the 1980’s when starting a new job in a manufacturing facility with noisy equipment. It was meant to be a baseline test, so I was surprised to hear about the hearing loss. Since I was in my early 30’s then and perceived no problem with my hearing, I didn’t take it seriously.  

Twenty years later, I began to experience hearing problems that puzzled me because I could still hear people talking, but I couldn’t understand what they were saying. I thought deafness was a problem with volume, not comprehension. At the time, I was also dealing with undiagnosed and untreated chronic pain, a new job in a noisy environment, the care of my elderly mother, and some other problems. I gave the pain top priority (and who wouldn’t?). Eventually I had another hearing test and wasn’t surprised to learn about the hearing loss. I didn’t have enough money to buy hearing aids at the time, which was frustrating, but at least I knew I wasn’t losing my sometimes tenuous grip on my mind. I’ve had hearing aids for 2 years now and although they do help, neither do they correct my hearing the way eyeglasses correct vision.  

Recently the header for a newspaper ad for a local hearing aid store proclaimed, “Use it or Lose it!” This was followed by:

§  Communication occurs in the brain.

§  When we lose our ability to hear, the ear stops sending needed information to our brain, affecting the ability to understand what is being said.

§  “Auditory Deprivation” can impair the way the brain processes sound.

§  In most cases the solution is hearing aids; sending the correct information to the brain, protecting it from atrophy. 

I don’t know how scientifically true any of that is, but it makes some sense to me, and it makes me wonder if 20 years of living without hearing aids caused some permanent damage in my brain. I might use a less discouraging term for this damage than “atrophy”. I know that my hearing loss has affected my relationships with other people, whose speech was so hard for me to hear and understand clearly, and who couldn’t understand why I seemed to ignore so much of what they said to me. I don’t think my poor hearing hindered my business career (though I could be wrong about that), partly because I spent several decades traveling overseas in order to work with associates whose language I didn’t speak, so that no one expected me to understand what they were saying and I was usually accompanied by an English-speaking associate who took pains to translate clearly. 

Just the official term for my kind of deafness – sensory neural – makes me wonder if the chronic pain I experience has also impaired my brain’s ability to process and interpret physical sensation. That could explain why even very subtle or gentle touch can feel like a bodily assault nowadays.

Tuesday, February 26, 2013


Today is my day off. I had lots of plans for things I’d accomplish today. So far I’ve gotten about half of them done. It's 1:00 pm and I feel like I've run out of gas already. As usual, I ask myself why. Is my anemia rearing its ugly head again? Is it from my fibro? Is it because I'm almost 60 years old?

When I got home from work yesterday, I looked at the local newspaper and read that a 20-yr-old man in a nearby KY town had been arrested for assaulting a two-month-old baby girl. She had suffered severe head trauma, abdominal trauma, and numerous other injuries. She was evaluated at the little hospital in that town and then airlifted to LeBonheur (a big children’s hospital) in Memphis for treatment. When I read that article, I thought my head was going to explode. I know that a crying, wetting, pooping baby can try even a saint’s patience but all I could think of was the little bitty 9-wk-old baby girl that one of my acquaintances babysits twice a week and brings to our morning  exercise class on those days. I can’t imagine anyone wanting to hurt her, never mind actually doing it. It wasn’t until this morning that I thought of the abused baby and wondered, “Where was that baby’s mama when this was going on?”

In the 1980’s, I worked as a VCASA (voluntary court-appointed special advocate) for the Family Court in Providence, RI in child abuse and neglect cases. A shrink who spoke at one of my training classes emphasized that the parents of those children are not monsters and that putting a lot of energy into hating the parents wouldn’t help the child(ren). Furthermore, the state of RI’s default position was that the best place for a child is with its family of origin, no matter what the nature of that family. I didn’t like that, but there wasn’t much I could do about it. I was 28 years old and still idealistic.
Anyway, my first case involved the children of a prostitute who’d been arrested for soliciting for the 11th time in 12 months. We had to determine whether the children should go into the care of her family while she was dealing with her legal problems. The woman had had 4 kids, but the youngest had died as in infant in a fire in the woman’s apartment (that was the story, anyway).

So I went to the shelter where the 3 surviving kids were being housed because I had to interview them. I didn’t get anywhere with the 2 youngest ones but was able to talk some with the oldest, a 5-yr-old boy. One of the shelter workers had suggested that I look at the little boy’s skin because a doctor had noted venereal warts and multiple skin injuries, apparently inflicted by one of his mother’s “boyfriends”. I said, “Ribby, can I lift up your shirt and look at your back?” He said, “Don’t call me Ribby [his family nickname]” but obediently lifted his shirt. His back was covered with scars. Some of them looked like cuts and others like cigarette burns. I was speechless. Ribby yanked his shirt back down and said something that got burned into my soul forever. While I was wondering how his mother could have allowed some asshole to do that to her child, Ribby said, “When is my mama coming to get me? I want to go home with mama.”

Come to think of it, maybe I’m not physically weary today. Maybe I’m psychically weary.

Friday, February 22, 2013


For much of my life, my raison d’ĂȘtre (reason for being) has been to make beautiful things. As an adolescent I wasn’t very clear on how I would do that. I thought I might write and illustrate children’s books, but that didn’t align very well with my secret suspicion that if I ever had children of my own, I would abuse them in some way. I thought that abuse might run in the family, and I wasn’t far off the mark, except that I believed abuse was a genetic inheritance rather than a behavioral one.  

Within a few weeks of graduating from college with a degree in art (and minors in English and French), I had married my college sweetheart. It seemed like a good idea at the time. Becoming a career woman or living indefinitely as a single woman was still quite a novel idea in 1975, Betty Friedan’s well-publicized contributions to the American feminist revolution notwithstanding. Although I had loftily sworn that I would never work retail, I found myself plying the marts of trade (as Mom put it) as a sales associate in a discount department store while my new husband went to graduate school.

So I was making money (a hot $1.80 per hour), but nothing of beauty. Oh, as a young wife I tried (within my limited means) to make our home beautiful while moving from apartment to apartment and finally to our own house. I made pretty Christmas ornaments and greeting cards, crewelwork pillows and curtains and clothes, but nothing that deserved (or so I thought) to be called a thing of beauty. I managed to advance my own career (at that point having nothing to do with the making beautiful things) and eventually found myself traveling the world as I designed and developed consumer products ranging from plush toys to accent furniture. Some of those products could be called beautiful, but they were a compromise between my artistic vision and my employers’ and clients’ needs for salability and profit. So, never a Thing of Beauty. And after all, I didn’t starve in a cold, drafty garret when making those things. I earned quite a lot of money doing it, which alone could be considered a beauty disqualification. 
It wasn’t until I was 56 years old and had published a novel (entitled No Ransom, and almost a beautiful thing) that I turned my gaze (no longer starry-eyed) back to the making of beautiful things. I suddenly found myself inspired by so many artistic ideas that there wasn’t enough time in the day to turn all of those ideas into Things of Beauty. I made collages and jewelry and loved doing it. I earned no money off that stuff, which almost made up for nearly 30 years of overeating (never mind starving in a garret). It was exhilarating. I was finally living my dream! 
And then what happened? 
As my elderly mother was sucked down the brain drain of Alzheimer’s disease and eventually died, chronic pain happened. Physical pain like nothing I’d experienced before, day and night, whether I stood, sat, or laid my hurting body down. Pain that nothing improved, not OTC painkillers or NSAIDs or physical therapy or exercise or massage or acupuncture…And it was not a beautiful thing. It was a harsh, ugly thing that made me cry. I cried in my car, in my chiropractor’s office, in my bed, in the shower, you name it. And I cried even more as I encountered one disbelieving medical professional after another. Smart people who said incredibly stupid and insensitive things like, “What do you expect for a woman your age?” 
Today, at age 59-1/2, I’m still making beautiful things, but at this point in my life, I’d have to say that the true Thing of Beauty is my own body (and remember, it’s Body by God, not Body by Jake) when it’s not in pain. I don’t get many of those moments, perhaps no more than I deserve, but I treasure them, each and every one.

Monday, February 18, 2013


When I was growing up and suffering from any kind of pain, be it from a skinned knee, a failed math test, or unrequited love, Mom used to say to me, "I wish I could do the hurting for you", but she often tempered the tender words with some tough ones, "I never told you life would be easy." Well, as much as I love ease and comfort, I don't expect to glide effortlessly through life. Nothing is quite as satisfying as the prize you win through sustained effort. Neither do I expect my life to be 90 years of unbroken misery. Buddhists believe that suffering is unavoidable, an intrinsic part of our existence, but they also believe that we must make every effort to relieve it. On the other hand, Americans, obsessed with the so-called War on Drugs, deny adequate pain relief even to dying cancer patients. Physical dependence on a drug (which can happen with many kinds of drugs, not just narcotics) is equated with addiction, even by medical professionals.

Why do doctors not work harder to relieve the suffering of their patients? Surely most of them start out with at least a few shreds of compassion. Do those shreds burn up into black smoke and disappear during grueling medical training? Is it so impossible for a doctor to act out of love for his fellow humans rather than his love of science or financial gain or his fear of the DEA? I've seen veterinarians act with greater compassion and love for their patients (who can't even express their pain in human language) than most of the doctors who have treated me. 

 The Jefferson Airplane song, "Somebody to Love," comes to mind: 

When the truth is found to be lies
And all the joy within you dies
Don't you want somebody to love? 

I feel as if pain has proven everything I once believed to be true - about my body, my health, my abilities, my healthcare providers, my religion - to be lies. And the joy within me is dying because pain is usurping my time and energy. It is eroding my ability to do even basic tasks (button a shirt, lift a saucepan, pick a pen up off the floor), never mind the ones I love (read, write, sew, cook, travel). It is destroying my ability to trust other people, especially my healthcare providers. In this place of pain, I long for somebody to love - somebody to believe me, help me, feel with me, suffer with me.

Wednesday, February 13, 2013


When I was growing up, and especially during my difficult, whiny puberty and adolescence, I many times heard my mother say, “Don’t exaggerate” or “Don’t be histrionic.” Raised by a control-freak, detail-obsessed registered nurse, Mom was not (as she often declared) a Nurse Jane Fuzzy Wuzzy. She told our grade school nurse not to send me or my brother home from school unless it was an emergency. She didn’t want to hear about low fevers or little scratches; slight bumps, vague aches, or passing pains. She herself didn’t complain about that kind of thing, so why should we? 

I think that’s why I didn’t take my pain seriously for the first six or so months after it began. At first I thought I might have the flu. I thought the pain might be psychosomatic. It couldn't be something worth complaining or whining about. I thought if I was a good, brave girl, it would eventually go away. Then I thought that if I could just find the right doctor, the right diagnostic tests or magic incantation, the pain’s code would be cracked.

Tuesday, February 12, 2013


Whatever your religious beliefs, do pain and suffering somehow make you a better person? Is a bone, or a heart, or a soul, made stronger by a break? Maybe. But an innocent baby shouldn't have to suffer before it qualifies for heaven, should it? The baby is a beloved child of God. I’m no baby – I’m 59 years old. Does my pain mean that I am, by contrast, an evil person, deserving of punishment? 

Maybe. But I no longer believe in the redemptive value of pain.      

All I can personally witness to is the destructive power of pain, its ability to rob you of independent functioning, self-respect, peace of mind. Swallowing my pain is swallowing a very bitter pill indeed. Mary Poppins sang that "a spoonful of sugar makes the medicine go down." If I must have this pain, why can't I have a spoonful of sugar to go with it?

Monday, February 11, 2013

HARD LESSONS: an introduction

I spent most of the year 2009 looking for a diagnosis and treatment for my chronic pain. I sought help from a primary care physician, nurse practitioner, chiropractor, orthopedic surgeon, rheumatologist, pain specialist, physical therapist, massage therapist, acupuncturist and psychotherapist, many of whom seemed to feel that my experience of pain was typical of “middle aged women with emotional problems.” In December 2009 I was referred to an internist whose earliest new patient appointment was in mid-January 2010. While waiting for that appointment, I kept a pain journal in which I rated my pain each day and tried to track what things aggravated it or alleviated it. I also used the journal to record my thoughts and feelings. Keeping a pain journal focused much of my attention on the one thing I wanted to forget: pain. Recording my thoughts and feelings about it wasn’t easy either, but at a time when no one else wanted to hear about it, being able to write it out and see it appear in text on my computer monitor seemed to validate my experience. 

It’s quite possible that stress played a part in my pain – not necessarily causing it, but aggravating it and eroding my ability to deal with it. After 11 months of unemployment, I had started a new job with an unpredictable schedule. My husband I run an unfunded, unofficial animal shelter, so we had the care of up to 21 cats and dogs at a time. I was watching Alzheimer’s disease eat my mother alive. Most of the time I felt very lonely, carrying all these burdens alone because my husband didn’t understand how I could look so good and feel so lousy. Every time I visited my mom in the nursing home, I longed for her to comfort me. When I suffered medical or other problems when I was growing up, she would often tell me, “I wish I could do the hurting for you.” But she was no longer able to even formulate that thought. I held her hand and listened to her tell me she was tired from taking her (long dead) mother shopping, or she would point at the ceiling to show me all the papers she must file that day, or ask me what had become of her car (she hadn’t drive for almost 20 years).

As I told more friends and acquaintances what was happening to me, I was able to get some comfort from talking with others who had similar experiences. Other pain patients are able to suffer with me, which is the essence of compassion (translated from Latin - "with passion" or "suffer with"). Other, well-intentioned people, simply don't get it. Pain, whatever its source (emotional, physical, spiritual), cannot be seen. Even the experts, doctors equipped with all the marvels of modern medical technology, cannot visualize it or measure it, so it's no wonder they're so inept at treating it. If you don't have a fever or an abnormal test reading, if no broken bone protrudes from your skin, if your shoes aren't filled with blood, you're likely to be labeled a whiner. Like the British monarchy, we're supposed to keep a stiff upper lip, stop whingeing and get on with it. 

Since my own physical pain has been dismissed by so many doctors in the past, I've wondered about the origins of stoicism. What is the purpose of it? Some strands of the ancient Greek stoic philosophy (which involved far more than just an indifference to pain) seem to woven into Christianity. From toddlerhood, I have accepted that Christ suffered and died on the cross for me, and that my own little aches and pains are insignificant compared to his great sacrifice. When my priest exhorts me to be a Christian ("little Christ"), does he mean that I too must suffer greatly in order to win a place in heaven? I have a hard time buying that notion these days. Even as an artist I've had trouble accepting the idea that I must suffer for my art - that if I don't starve or suffer for it, my output doesn't even qualify as art.
Nowadays I doubt that suffering will earn me salvation. Ceaseless pain clouds my vision of a benevolent heavenly father who loves and protects me no matter what. Instead of feeling like a beloved child of God, I feel like the butt of a cosmic joke. Or maybe it's the devil, taunting me, "You were a good girl. You believed, you strove, you behaved well and followed all the rules, but it's all a joke, and the joke's on you!" Sometimes my hands and feet feel as if they're being stabbed with a knife. No stigmata appear, and I'm pretty sure no one's going to deify me.