LAME

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.

LOSS & INCONTINENCE

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.

USE IT OR LOSE IT?

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.

WEARY

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 11^th 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.

A THING OF BEAUTY

For much of my life, my raison d’être (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.

DON'T YOU WANT SOMEBODY TO LOVE?

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.

NURSE JANE FUZZY WUZZY

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.