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.

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.