But Have You Tried Tumeric?

Yes, there is indeed something wrong with me. A somewhat mysterious, rather difficult something. When I was 21, I almost died from what may have been swine flu. My lungs went out. Surgery saved my life and scarred 25% of my torso. I have trouble walking, trouble breathing–all kinds of trouble.
And no–tumeric doesn’t help. However, there are times when passing acquaintances prescribe it weekly.
Maybe it is because I live in a New Age town. Maybe because people are kind (or bossy and butt-insky.)
Some people don’t trust allopathic medicine. It is still shocking to me how much this involves all-or-nothing thinking. Does something have to be perfect for me to engage in it? Obviously not, or I’d never stay married, work a job, have friends, raise children, or live in my neighborhood. Or write or pray or exercise or anything else.
I am sorry to say it, but many things do not have a “cure.” They can be helped, but not completely. My right lung is cloudy and scarred on the X-ray. I know to not panic when a doctor sees it for the first time. I also know not to bother with tumeric.
Not everything has an understandable origin. Many things–physical, emotional, spiritual–are in a gray zone and will remain there.
“Health” has eluded me for 56 years. However, this is not your problem to solve. I’m not going to solve it either. I’m going to treat the symptoms, accept the rest, and never buy into any promotion of ableism. Sickness, old age, and death are not failures but the common human lot. Check out your Buddhism if you feel confused about this.
My experience has helped m a lot during covid. Here is how:
1. I already know my own mortality.
2. I respect killer viruses.
3. I believe in medical science while acknowledging its limits.
4. I don’t expect easy answers.
5. I’m fine thinking for myself while remaining part of the human community.
6. My belief in control is very limited.
But most importantly, I’m used to functioning with fear about my health. I don’t like fear any more than anyone does, but after decades of practice that fear doesn’t rule me, at least not every minute.
What do I like from the world? Mild friendly sympathy. That people realize I actually am an adult, making my own decisions. And I won’t turn down a slice of pie.
But not tumeric.
P.S. Please do not post suggested cures in the comments section!

TSA Disability Nightmare from NPR


Despite calls to improve, air travel is still a nightmare for many with disabilities

“People with disabilities are subject to inhumane treatment at every turn,” says attorney Katherine Macfarlane, who complained of “rough pat-downs,” TSA agents who tried to open medications that needed to be closed and sterile, and being forced to stand for long periods of time, which is hard for her to do because of her rheumatoid arthritis. “I’m dreading my next flight. I’m a lawyer and law professor who literally teaches and writes about disability law and have not figured out how to make it through TSA and fly safely.”

Jane Brody on Breathing

The Breath Lesson
Miriam Sagan

Color the lungs blue
Because breath
Is a blue ribbon unraveling
From sky to mouth.
This is the lesson of breath:
The meaning of counting to ten
Before touch. Breathless.

I found the article below a welcome reprieve from the continuous refrain of “just put on a mask.” In fact, I am going to get some breath lessons from a professional later this week! As a person with one working lung, I often use breathing techniques–alternate nostril, full exhalation, three part breath, and even Lamaze to create a breath I can be in sync with.
It’s always good to be reminded again that inspiration means to bring air into the body.

Jane Brody: “Doctors who study breathing say that the vast majority of Americans do it inadequately,” James Nestor, author of a new book, “Breath: The New Science of a Lost Art,” wrote recently in The Wall Street Journal. “How we breathe matters,” he said, “and our attention to it is long overdue.”

For example, Mr. Nestor noted, “nose breathing is better than mouth breathing” because it’s protective; the nose filters, heats and treats raw air. “Inhaling through the nose stimulates the release of hormones and nitric oxide, which helps to regulate vital functions like blood pressure and increase oxygenation throughout the body,” Mr. Nestor said in an email.

Given that most of us take about 25,000 breaths a day and breathing properly is critical to how well our bodies function, we should try to get the most benefit we can from this life-sustaining activity, with or without a mask.

Crip Camp by Miriam Sagan

At the start of the pandemic, I knew–it was going to be harder to be disabled. I’ve been wanting to write about how my inability to breath with a mask has limited my access to space, but the debate on masks is so polarized that I hesitate.
My relationship to my disabled body is often one of fear–and a lot of that is social fear. After all, I’ve been knocked to the ground in the San Diego airport and cursed at a Farmer’s Market for being too slow to get out of someone’s way. I’m afraid that if I talk about my issues I’ll get screamed at–or hurt.
That said, I’m just not up for the discussion right now. Instead, I want to talk about being inspired–by the documentary movie Crip Camp. You can see it yourself, or read about how a camp in upstate New York led to the creation of the disability rights movement. But what I want to talk about is how it made me feel. Good. Very good! About myself and about other people.
Here are my take aways.

1. Yes, I can call myself disabled. The early disability rights movement was aware of hierarchy but was inclusive–of those born disabled, those disabled by disease (like I was, or by polio), those who acquired disability (veterans, people in accidents). And not just disability in terms of mobility, the movement included deaf people, blind people, and more.
I’m always afraid: people won’t think I’m disabled ENOUGH.
I’m always afraid people will think I’m not able-bodied ENOUGH.
Indeed, I have a problem.

2. Yes, self-determination and self-help (in the communal political definition, not the New Age one) are a powerful force. Disability activists, during a lengthy occupation, were amazed to have three meals a day delivered to them by the Black Panthers, but the ideological overlap was clear. Power–and governments–are not benign. We have to take care of ourselves and each other first, as a way to build our own group power.

3. Yes, I have gratitude. Every time I don’t have to step off the curb but can take the incline, every time I see a ramp instead of stairs…and most importantly, when I realized that the law protected me and I wouldn’t get fired if I started using my cane at work (and that I didn’t have to EXPLAIN)…I feel gratitude. Gratitude to those activists who forced compliance to accommodation, despite great resistance.

4. And yes, I’m going to continue to self-identify the way I please. I say “crip” and “crippled” about myself. I say “crippled” leg. Could I use a nicer word? Sometimes I feel like it, sometimes I don’t. It’s my leg–my body, my self–after all. My self-definition.

In Which I Realize I Am An Olympic Athlete by Miriam Sagan

I fucked my leg up “hiking” last weekend. The Park Service described the walk as “easy” and fit looking young folk did it in fifteen minutes. Hidden Valley, a very pretty part of Joshua Tree. Up some steps, through a rocky crack, down, around…It took me an hour, and by the end I couldn’t feel my right leg. No surprise. This happens a few times a year. As I was walking, at first I felt euphoric. I had a vision in my head–if I didn’t have the will power I have, the help I’ve gotten (PT, osteopathy, rolphing, you name it) I’d be in a wheelchair in the Bronx. It felt true. Granted, I’ve spent very little time in the Bronx. But I knew what my vision meant. I might be slow, gimpy, and on my cane…but I was in Joshua Tree under a peerless blue sky passing by rock formations that seem to sing silently straight to the heart.
Towards the end of said “hike” I got a little weepy. “Rich, you gotta hit my leg,” I said. This is a great trick learned from a master body worker. Rich does a few karate chops or shiatsu moves on my leg and sensation returns. Recently I got some clarity on a diagnosis–the femoral nerve gets trapped in muscle/soft tissue spasms. And voila–or whatever the opposite of voila is–control of that leg is gone. This is just one of many problems from long ago illness and surgery.
So I made it back to the trail head, having done the loop. “Good work,” Rich said, which filled me with ridiculous happiness. I love praise, and we hit upon that as another way to keep me going. It seems silly, but it really perks me up. “I’m an athlete,” I thought. All these fit people from L.A. are in great shape, pushing performance. I’m in terrible shape, but I’m pushing too. Not one of these people could walk this loop with such a bad leg and so much pain. Heck, half my right lung is gone and I can still do it! If those fit hikers were me for five minutes they’d collapse. I rock!
Of course, I paid in the usual fashion. My leg hurt more than usual for a few days. I complained–maybe quite a bit–and to several people. I felt both pleased with myself and stupid for pushing.
But a certain euphoria has not left me. I can walk. And I’m not in the Bronx. I’m going to take credit for both those things.

Disability Walkabout by Miriam Sagan

I was at the Climate Strike rally, minding my own business. Sitting on a wall, propped by my cane, several feet from anyone else. A more elderly lady than I appeared, and a middle aged man, in his haste to get her a folding chair, hit my leg with said chair. Mumbled “sorry” and dashed away. I wasn’t hurt, but I was a bit freaked out. After all, that leg is the reason I’m avoiding the crush of a crowd. I can’t afford a lot more hits to it.
Recently, I’ve been in a dark mood on this subject. People seem to be more aggressive towards me when I’m on the cane. A friend said she didn’t think that was true, that people were just trying to be helpful. Another friend—also on a cane—said yes, sometimes it makes people hostile.
Or perhaps it just makes me visible in a way I don’t appreciate—like being pregnant. Thirty years ago—when I was—strangers would pat my stomach and comment. I don’t like being touched unexpectedly by people I don’t know, but I attempted to be pleasant.
Less so now. There was the airplane steward who tried to take my cane and put it in the bin when I was folding it up to fit in my pack. Somehow this put me negatively on his radar. Then my husband was rubbing my bad arm and neck.
“Keep this rated G,” the steward said.
We stared at him, taken aback.
“OK,” my husband said.
But the guy continued with more of this, aimed at me, “Keep it rated G.,” over and over.
“Sir,” I said.”I’m in pain. This helps. If it is inappropriate, just say so and I’ll stop.”
“I’m joking,” he said. That last refuge of a conversation that isn’t going well. “HE got my joke. Why not you?”
Because I’m a woman? On a cane? “I’m not in a joking mood,” I said.
Maybe that’s all it is. I’m not in the mood to be hit by a chair, give up my cane, be commented on. I’m just not in the fucking mood.

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.

Disability Blog

This millennial disability blog was recommended to me–it’s good writing with a fresh perspective. Check it out!

From the author: I’m twenty-one years old and my name is Leah. I grew up in Colorado Springs, Colorado until I was eighteen. Currently, I am living with my family and going to school to become an English high school teacher. I was diagnosed with Juvenile Rheumatoid Arthritis at age eight.

Thoughts on summer: “During the summer, my constant state of tired can no longer be hidden as well as I would like. In the summer, people find it weird to stay in bed instead of run around outside in the heat…which sounds like my personal hell. As much as I love things that go with summer (smoothies, lemonade, shorts, flip flops, the pool, etc) I loathe the heat purely because I can’t cool down enough with my long locks pinned to my head and my poodle hair becoming more obvious. I’d much rather snuggle my lovely pillows until the sun goes down and feel my burst of energy late in the evening.”

Link here: http://painfulstepforward.blogspot.com/?m=1

Continuing Thoughts on Disability

I found this a very thoughtful article. It happens to me all the time—people tell me they don’t think of me as disabled. They also say they don’t think of me as old. I’m not accepting these as the compliments they intend to be. I maintain my opinion that there is nothing wrong with being either crippled or old, so why should folks say I don’t “seem” that way? No one ever says I don’t “seem” short! Sure, I know they mean I’m lively and engaged. Just proof that being old and crippled has little to do with life force. I once read a book by a disability activist who noted that able bodied people don’t seem all that happy much of the time. I thought this funny and true, and notice it a lot. I’m not saying disability isn’t a challenge—and a pain. Just that it truly isn’t something to engender shame.


Becoming Disabled
by Rosemarie Garland-Thomson  Aug. 19, 2016
New York Times

Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.

I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”

This impulse to rescue people with disabilities from a discredited identity, while usually well meaning, is decidedly at odds with the various pride movements we’ve come to know in recent decades. Slogans like “Black Is Beautiful” and “We’re Here, We’re Queer, Get Used to It!” became transformative taunts for generations of people schooled in the self-loathing of racism, sexism and heterosexism. Pride movements were the psycho-emotional equivalents of the anti-discrimination and desegregation laws that asserted the rights of full citizenship to women, gay people, racial minorities and other groups. More recently, the Black Lives Matter and the L.G.B.T. rights movement have also taken hold.

Yet pride movements for people with disabilities — like Crip Power or Mad Pride — have not gained the same sort of traction in the American consciousness. Why? One answer is that we have a much clearer collective notion of what it means to be a woman or an African-American, gay or transgender person than we do of what it means to be disabled.

A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that.

Yet disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time.

To read the rest: