Disability in Autumn by Miriam Sagan

The pain meds are wearing off and it’s time to go to bed. Problem is, it’s only 4:30 pm and dinner is half cooked. And it’s a nice dinner, too, fancy rice, warm spinach and my winter kale, shrimp. Rich won’t be home for another hour or so.
I can take different approaches. First off, I’m glad it isn’t 2 pm, like it is some days. I can take a bath in epsom salts, and more or different meds. In fact, that is the most likely scenario. I want to fake it a bit longer.
Here’s the thing—I basically get two units out of three per day. It’s really not that bad. I had a productive writing morning, I had lunch with a friend, and a fun fabric adventure later. New Mexico went mostly blue, and the leaves are still yellow. We’re in that autumn inhalation that pretends there is no winter.
I’m the same.
I know it is kind of high school-y to wonder how others see me. But I just ordered a book on that subject, partially because I feel a disconnect. I think I seem cheerful. However, a friend recently died and I ended up sobbing in my car this morning. Embarrassingly it’s Boy George’s “Karma Chameleon” that set me off because my first, now dead, husband loved it. In fact, he played it over and spring cleaning one March day long ago. That night my godson was born, and I was there to see it.
Marvelously, I’m not deteriorating except for age. What I have or am doesn’t seem to be degenerative (not that anyone really knows what it is). Best guess—post swine flu, lung loss, and surgery. I’ve been noticing recently how my sternum moves out of whack, my ribs float and pop. “Unsurprisingly,” says my trusted PT.
I’m neither a heroic person nor am I blasé. I enjoy complaining, but I don’t mind sucking it up. I don’t compare myself to others or to myself. After all, I’ve been this way for forty-five years.
Being an introvert works to my advantage—I don’t WANT to be sociable all day. And my extrovert bits keep me going—I get curious or interested or motivated and find myself on a plane off to an adventure in Japan or Nebraska.
Compensating all the while.

Flying Crippled: Inadvertent Adventures in my World of Invisible Disability

Disabled Traveler

Earlier this summer, my husband Rich and I drove across country. It was a wonderful experience, one I thought I’d never have. Long periods of sitting really spike my already chronic pain level. But if there is anyone who knows how to “accommodate” me, it’s Rich. He made it fun, he made it easy, and I’ll take some credit myself—for asking bluntly for what I needed (to be active—driving, walking—for only 2/3 of each day and then to rest).
Part of what made it doable was that while Rich drove back, I flew. Ostensibly quicker, and less crippling. Ha ha. I should have driven.
My first problem was immediate—I was flying from Baltimore to Boston. I was happy to get pre-boarded on a flight without assigned seats. I boarded, left my cane on my seat, and went to the back bathroom.
Then this ensued.
Stewardess: Why didn’t you use the bathroom before you got on the plane?
Frankly, I was stunned, but I said: I’m disabled, my cane is on my seat, in BWI this seemed easier. I’m sorry, but is the bathroom available?
Stewardess: Where are you sitting?
I gesture, Behind the wing.
Stewardess: Why didn’t you use the bathroom up front?
I stared at her.
Stewardess: Well, this is just getting too complicated.
Me: I agree!
Stewardess: You can use the bathroom.

No sooner did I shut the door, than I found myself sobbing. I’d done everything I could to take care of myself and inconvenience no one, and it wasn’t working.

Do some people—even service professionals—dislike, scorn, or fear me because I’m disabled? I’m thinking: yes. What I feel in terms of prejudice is of course the assumption that I’m able bodied. But it’s more than that. My disability—made visible by the cane—seems to make people REACT—with pity, or negativity, with unwanted advice, with dislike or even sadism.
I want to say: LEAVE ME THE FUCK ALONE. My problem is not yours—it’s mine—and if you’d comply with the law and common sense we’ll be fine. Got it?

I got to Boston. A few days later, I flew to Dallas. Then, in a that-fast-bit-is-impossible afternoon, I was on a flight to Santa Fe that got delayed twice, finally cancelled.

The gate agent was re-booking us…a long line.
“Can you accommodate me?” I gestured to my cane.
“You can sit and wait until everyone is done,” he said.
Of course I was not asking that. I was asking—can you hold my spot in line? But he wouldn’t.

People suggest a wheelchair in airports, and it may come to that, but I don’t want one. I’m so grateful I can walk—it takes hours of PT and more each week. And walking helps as a break from sitting. Why should I be less mobile just because others can’t deal with a woman on a cane? Is it either wheelchair or trouble?

I wrote a letter of complaint about the Baltimore bathroom fiasco. My request: don’t ask people why they need the bathroom. I started thinking about it—infection, pregnancy, miscarriage, ostomies, cancer, autoimmune disease and more may be implicated. Did the stewardess really want to hear an answer like that? Travel sites also stress using the airplane bathroom as little as possible. Well, it’s there for a reason.

I got sort of an apology, and a $50 travel voucher. Better than nothing.

The New Study on Pain Killers and Empathy is Giving Me…A Pain

I’m perhaps overly sensitive to the current societal discourse on pain, because it is close to home. I have chronic pain. Or, I’m in it. Let’s just say—pain is me.
So when I read a study saying that pain killers decrease empathy, I get annoyed. No doubt the study will prove to be flawed, unreplicable, like the majority of such health studies. But even if it proves to be right, I just don’t care. That’s because, I know from extensive experience, pain itself does not make you nice.
Pain makes you cranky, miserable, self-engrossed, frightened, and unable to concentrate. Imagine slamming your finger in the car door. Does this flood you with the milk of human kindness? I think not.
Are folks with arthritis or sciatica more like saints or bodhisatvas? I sincerely doubt it. Does breaking your arm make you Mother Teresa? Doesn’t seem to.
I think in part this is because empathy itself is overrated. Empathy is feeling what others feel. A kind of co-dependency or lack of boundaries? Sure, I’m being a bit sarcastic (which ironically is a kind of empathy) but frankly I don’t think my best behavior is based on empathy. It is based on ethics. A ethical code suggests that I follow the golden rule and act towards my fellow humans as I’d like them to act towards me. It doesn’t depend on my feelings—or pain level—of the moment. It is an intention.
I’d rather have a dentist who was drilling my tooth guided by professionalism than empathy. I don’t want the doctor to shriek at my rash, faint at my blood. I want my friends to advise and care—not to feel my feelings with me. In fact, I look to others for perspective, not identification.
I’ve never heard of a woman in labor yelling that she is going off to join the Peace Corps just as soon as this baby gets born. Cursing, yes. Demands for, gasp, pain relief, sure. A bit of blame for those around her who aren’t in labor—certainly. Big time empathy? No.
Without anodynes, I would be unable to work, drive, sleep, exercise, or sit through a movie. I was once a participant in a giant shrine performance and I added my most precious possession to that monument—an ibuprofen. I would take it if it dropped my IQ, shortened my life expectancy, or turned me purple.
I’m also a fan of stronger pain killers. I understand everything that is bad about the over-prescription of opiates but here the conversation makes me downright nervous. I’m not a sociologist, so I can’t really tell what overdose stats really mean. All I know is that the human tendency to addiction doesn’t frighten me personally as much as a puritanical society’s refusal to treat pain. And please don’t tell me to stretch, get rolphed, go to PT, get massage, soak in salts, meditate, do progressive relaxation, and have a good attitude. I do all of these things on a daily or weekly basis. They help, but they don’t substitute for pain medication.
Interestingly, emotional pain seems to work two ways. It can make you self-engrossed, narcissistic, and oblivious. Or, it can make you compassionate, caring, and other directed. Actually, pretty much all of human experience works this way. It’s up to us to choose how we’ll act, day by day, not based on the whims of the moment.
And frankly I’d like to go about each day, with all my flaws and my aspirations, with as little pain as possible.

A Year of Living Visibly (Disabled): Part 1

Just about a year ago, I came out abut my “invisible” disability on this blog.

I wrote:

I was on a panel yesterday about diary writing and I left feeling a poet should give everything away, have no secrets, withhold no knowledge.
And yet I have a secret, one in plain sight. That I admit to and lie about. That other people see and don’t see.
I’m disabled. I’m crippled on my right side. I have trouble walking, and trouble moving my arm. I can’t really drive a stick shift anymore. Or comfortably walk or sit for much past thirty minutes. I use a cane. But not at work.
On Friday night I ran into several people from work at the opera. I was wearing a cute gold and brown tunic, jeweled earrings, and leaning on my fancy cane carved with flowers I got in Red River. And I was suddenly horribly embarrassed, as if caught out somehow. Crippled.
This is not a secret. This is part of my HR supported work life. Everyone in my family has seen me weep in pain, and crawl when I can’t walk.
This is a secret. I look able bodied if you don’t look closely. I lie and say I’m overextended when I’m flattened by fatigue. I’d rather be thought clumsy or anti-social or elusive than admit I need to lie down–right now.
I’m thinking of taking my cane to work tomorrow. If I have the nerve. Wish me well.

***

Well, I did take my cane to work. Pretty much all year. And guess what happened? My pain level came down, surprise, surprise. Faking it was not working very well. My favorite cane-in-the-classroom moment was in a lit class when we were doing the riddle of the Sphinx. Everyone was looking at me blankly. I started gesturing with my cane. “What goes on three legs at night?” Finally, yes, the answer—a person!

***

I was part of a proposal for a panel at the AWP conference on writers with invisible disabilities. I gather three disability focused panels were proposed. All were rejected. Goes to show…I’m not sure what. That writers with disabilities are still either invisible or discounted in academic writing programs?

***

My politics didn’t change. I haven’t connected with a disability community in any more profound way. I haven’t had an ideological shift. Maybe I should, maybe I will, but for now I remain the same. Actually my politics have been about the same since I was about 14. A totally outdated romantic feminist socialism. Of which I am quite fond.

***

More to come

An Invisible Disability is not an Invisible Person

I don’t think I’ve been discriminated against for my “invisible” disability because I hide it. But surely my hiding is based on a fear that others won’t accept me. Essentially I can cross the border between invisible and visible just by use of a prop—one of many canes. Even that remark should alert you—or me perhaps—to the fact that I haven’t been able to walk unaided on certain days and on certain terrain for over twenty years. But I pretend this isn’t the case. And that is how I’ve collected the canes—many of them have been bought in an emergency when I couldn’t navigate snow or keep standing. Now at least that level of denial is past. I have a cane in my office, one in my car, one in the bedroom, one in the living room, and one ready for any suitcase or purse.
In the past six months, as I’ve been using the cane more at work and around town, I’ve had to deal with peoples’ reactions. Some are simple, and useful. For example, if I enter a big box store with the cane the world becomes more accommodating, i.e. I can ask for a chair if I have to wait. But recently I made the mistake of taking my cane into a party, because the house was on a rough dirt road. Instantly I had attention I didn’t want. Was I ok? What had happened? This was of course from friendly acquaintances, but it paralyzed me socially. I couldn’t communicate.
What should I have said?
I have a weird paranoid fantasy that someone will yell at me for using the disabled stall in a public bathroom. The presence of the cane helps with this, but of course I don’t always have the cane. I had a therapist once ask me: has this ever happened? Implying how unlikely that was. True, but it is my fear. A fear that no one will accept that there is something “wrong” with me because I’m hiding it? Sounds absurd. But I’m afraid of both being hidden and being visible.
Recently at a family party I put my cane down for a bit and my nieces and nephews—a theatrical group—started tap dancing with it. On my way out, I had to nag for it back—give me my cane! My cane was having fun without me. It was getting a bit of Broadway. I was jealous of the cane, and sad I wasn’t tap dancing, and irritated that no one cared I needed it.
And then quite suddenly I was happy about the whole thing.

3 Legs in Montreal

I was recently in Montreal, enjoying the French, the food, the metro, the art–and my trusty travel cane. This cane folds up neatly, and goes everywhere with me–and it changes how people perceive me. In the metro, the old and young got up to let me sit. I feel more visible with the cane, and that is helpful, as usually my leg problems read as “invisible” unless you notice the limp.
I like an elegant cane, and also a rustic stick–but that, I discovered–needs to be confined to country terrain. It makes me look what I am not, athletic and hardy and hale. Traffic speeds up instead of slowing down.
A few years ago in Morelia, Mexico I went out on cobblestones with my cane early one morning when the streets were still being washed. Suddenly it seemed as if ever other pedestrian had a cane, and was smiling at me.
Several elderly ladies of my acquaintance refuse a cane for the simply reason of vanity. I am not the kind of person who can risk a broken hip for that. I started using the cane in my forties for just that reason–figuring to start when I didn’t look that old. It has worked–I judge it like any accessory.
However, every once and a while I feel self conscious. Once in the parking lot of a scenic park in Arizona I was suddenly hit by self-consciousness. How did I look? The universe responded immediately in the person of a beat up but congenial biker.
“Hey mama,” he called out to me. “You look happy!”
In Montreal’s old city I almost collided with a woman my age with a cane coming around a corner. She smiled and gestured for me to go first, and said in French something like “it is all in the family.”
Remember the riddle of the sphinx? What goes on four legs in the morning, two legs in the afternoon, and three at night. I know the answer. Do you?