“in Louisiana the poverty rate increased more than in most states over that time”

6. Louisiana
Middle income growth 2009-2013: -4.9%
Fifth quintile income growth 2009-2013: 1.0%
Fifth quintile share of income: 51.9%
Middle class household income: $44,442 (8th lowest)

The widening income gap in Louisiana does not bode well for the state’s poorest residents. The poorest 20% of Louisiana households earned $8,851 on average in 2013, lower than in every state except for Mississippi and a substantial decrease from 2009. In addition, the combined incomes among the poorest fifth of households accounted for 2.8% of the state’s total income in 2013, down from 3.2% in 2009, one of the largest drops nationwide. Meanwhile, the wealthiest 20% of Louisiana households held nearly 52% of the state’s income in 2013, higher than the comparable national figure, and also a substantial increase from 2009. While the widening income gaps in the states where the middle class is suffering did not always mean a higher poverty rate among residents, in Louisiana the poverty rate increased more than in most states over that time. By 2013, nearly one in five Louisiana residents lived in poverty, one of the highest poverty rates in the country.

States Where the Middle Class Is Dying. 24/7 Wall Street, 1/22/15.

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“a federal prosecutor who doesn’t give a fuck”

Preet!

The Most Dangerous Man In American Politics. BuzzFeed News, 1/22/15.

His frontal assault on the open secrets of New York political power has been a genuine shock to the state’s politics and even to its press, who missed the secret payments that appear to be at the heart of the reported Silver indictment. The process began last year, when Andrew Cuomo cut a particularly crude variety of the deal on which most statehouses operate: He shut down an ethics investigation into the state legislature in exchange for legislative support for his policies. His gambit became the subject of an excellent Times investigation — and then, to everyone’s surprise, Bharara essentially reversed Cuomo’s move, using his expansive power to seize the evidence Cuomo’s Moreland Commission had gathered and turn it over to his own investigators.

Silver’s indictment cites the Moreland Commission files, and notes that Silver had blocked the commission from investigating lawmakers’ outside income before shutting it down. Bharara’s move has already done massive damage not just to Silver, whose spokesman didn’t respond to an email Thursday morning, but also to Cuomo, implicated by extension in a cover-up.

Now Bharara is at war, and should he win (and even if he loses — some of Giuliani’s Wall Street prosecutions fell apart), he is now an obvious candidate for any of the major New York political offices. And as Mike Bloomberg’s allies, in particular, look for a new challenger to Mayor Bill de Blasio, the prosecutor who took on his own party will likely be the first man they call.

Bharara was, briefly, among the figures mentioned last fall for another top job, attorney general of the United States, replacing a loyalist who served as President Obama’s “heat shield.” Obama went instead with the U.S. attorney for the Eastern District of New York, Loretta Lynch, a well-regarded prosecutor who has not shown the same eagerness to indict prominent Democrats. Bharara, with two more years in office, is that particularly dangerous and rare political figure: a federal prosecutor who doesn’t give a fuck.

 

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“because it’s Carnival time”

Orleans parish, Uptown route unless noted. For all Carnival parades, routes, and details, click here.

Sat., Jan 31

Krewe du Vieux 6:30pm
Krewe Delusion follows

Fri., Feb 6

Krewe of Cork 3:00pm, French Quarter
Krewe of Oshun 6:00pm
Krewe of Cleopatra 6:30pm

Sat., Feb 7

Krewe of Pontchartrain 1:00pm
Krewe of Choctaw follows
Krewe of Freret follows
‘tit Rex 5:00pm, Marigny
Knights of Sparta 6:00pm
Krewe of Pygmalion 6:45pm
Krewe of Chewbacchus 8:00pm, Marigny

Sun., Feb. 8

Krewe of Carrollton 12:00pm
Krewe of King Arthur and Merlin follows
Krewe of Alla follows
Krewe of Barkus 2:00pm, French Quarter

Wed., Feb 11

Krewe of Druids 6:30pm
Krewe of Nyx 7:00pm

Thu., Feb 12

Knights of Babylon 5:45pm
Krewe of Muses 6:30pm
Knights of Chaos 6:30pm

Fri., Feb 13

Krewe of Hermes 6:00pm
Krewe d’Etat 6:30pm
Krewe of Morpheus 7:00pm

Sat., Feb 14

Krewe of Iris 11:00am
Krewe of Tucks 12:00pm
Krewe of Endymion 4:15pm, MidCity

Sun., Feb. 15

Krewe of Okeanos 11:00am
Krewe of MidCity 11:45am
Krewe of Thoth 12:00pm
Krewe of Bacchus 5:15pm

Mon., Feb. 16

Krewe of Proteus 5:15pm
Krewe of Orpheus 6:00pm

Tue., Feb 17

Krewe of Zulu 8:00am
Krewe of Rex 10:00am
Krewe of Elks Orleans follows
Krewe of Crescent City follows

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Ankylosing Spondylitis: Myths from Drugs.com

If your rheumatologist or GP spouts any of this nonsense, look for another doctor; if you have no other options, arm yourself with research and bring a friend to your appointment for moral support and backup. There are many doctors, even rheumatologists, who firmly believe these, and other, off-base things. I suspect AS is not really “rare” but simply undiagnosed because of these myths, and other stupid-ass shit, like “only men between the ages of 18-35 get AS“:

1. Ankylosing Spondylitis (AS) Only Affects the Back

No, not at all. This is why many women are diagnosed with fibromyalgia [because they are female, of a certain age, and complain of pain, fatigue and sleep problems] since some doctors think neck, hand, foot, and other pain have nothing to do with AS. Instead of asking more questions, following up or delving deeper, many women are diagnosed with FM and dismissed, maybe with a prescription for Lyrica or Cymbalta.

2. Ankylosing Spondylitis Primarily Occurs in the Elderly

No. It may seem so because elderly people are more likely to show obvious signs of fusing, like a curved spine. You’d think the goal would be to prevent that kind of end-stage damage. But it can take 7-10+ years to get the right diagnosis, possibly longer if you are female. Too many doctors think that fusing is a symptom, rather than the end stage of a disease process.

3. Ankylosing Spondylitis is Easily Curable

If it were, do you think my black ass would be in pain all the time and using a motherfucking cane?

4. Diagnosis of Ankylosing Spondylitis Requires Many Tests

Though we’d all like to think that “tests” provide all the answers anyone needs, that’s a dangerous oversimplification. Some doctors will insist that only people who test positive for the HLA-B27 gene can have AS but there are many people with the HLA-B27 gene who do not have and never get any symptoms of AS. The opposite is also true, that you can have AS and even fuse though you do not carry that gene. Diagnosis takes time, a thorough medical history, patience and, sometimes, sophistication. You can’t decide if it’s AS from one round of tests and a 15-minute office visit, especially if the doctor doesn’t think patient input is needed.

5. Drugs Are the Only Way to Treat Ankylosing Spondylitis

Generally speaking, drugs aren’t the “only way” anything can be treated. No responsible doctor will tell you that all you have to do for your Type I diabetes is take insulin. Getting a bypass won’t help much if you do not do something like quit smoking or start some kind of exercise. There are things that you can do to ease your symptoms, reduce your suffering, and maintain your strength, flexibility and range of motion. See #6 and the references below.

6. People with Ankylosing Spondylitis Should Avoid Exercise

BWAH-HAH-HAH! Do this if you want to be bedridden and disabled in a year or 2. Though high-impact sports like rugby may no longer be the best choice for you, there are lots of things you can do and that are helpful and feel good: When you have a chronic illness, you need to take care of yourself well since your body is already under a great deal of stress.

Yeah, chronic illness is stressful. If you don’t know that, I’m glad you’re a healthy person.

My ASers, swimming, walking, hatha yoga, stretching, tai chi, water aerobics [especially in a warm pool, and 86º is not the kind of warm I mean; think “therapy pool,” about 91-94º], and bicycling are all good choices but be sure it’s something that works for you, that you don’t overdo it, and that you are always safe. People like us can fall down and hurt something, badly. [No insurance company will pay to monitor your AS with regular MRIs so the first time you know bones have started to fuse and become brittle is after you fall and break some things.] And if you have never exercised, start slowly, gradually, gently. You don’t have to be in “perfect” physical shape tomorrow, next year or ever. Play this for the long game, not next week. And don’t forget pleasure, joy. Stretch outside in the sun. Walk while your kids run or roller skate.

Scroll down to Tables 1 and 2 in this post for recommendations for AS patients.

7. Drug Treatment for Ankylosing Spondylitis is Always Expensive

Always? No. NSAIDs can be economical. Biologics can be very expensive but many drug manufacturers have assistance plans to help with costs, whether you have insurance or not.

8. Ankylosing Spondylitis Leads to Severe Disability

I’m not sure why the picture with this slide is of someone smoking a cigarette.

No, AS is not a death sentence. If you take decent care of yourself and have a supportive medical team [“team” meaning your PCP/GP, rheumatologist, pain management doctor, physical therapist, psychiatrist, acupuncturist, etc.], you can avoid “severe” disability.

Your life will change with AS but it doesn’t have to end. Some people do have more severe forms of AS but it’s best not to assume you will become one or that you are doomed, doomed, doomed. It sucks but I don’t feel, most days, like the walking dead…..

9. There is Little I Can Do to Help Myself

You should know right away this one is total bullshit. There is always something you can do, even if it’s just advocating for yourself to get the care you need. You can exercise or stretch, get physical therapy, find a therapy pool, soak in a hot tub, eat well, find ways to reduce stress, and maintain a quality of life that fulfills, and fills, you. Nothing is hopeless. Not even death because then at least pain and suffering end.

10. If NSAIDs Don’t Work, My Treatment Options Are Limited

What does “don’t work” mean? For example, I take a NSAID daily, and did before my AS diagnosis came, but I still need a cane, exercise, heat, a biologic, a psychiatrist, etc. Without the NSAID, the peripheral arthritis [part of AS, not separate] locks up my fingers, feet, and toes and my spine, SI joints, jaw, wrists, ankles, etc. get worse within 24-48 hours. Using a NSAID can cut down on the amount of pain medicine you need daily. [Pain medication is a whole other bucket of turds to wade through.] Just because NSAIDs don’t stop AS cold doesn’t mean they don’t work.

And there are other options if you cannot take NSAIDs. Finding them may take some patience, trial and error, and a doctor who’s willing to work with you as a team. Even if there’s no simple answer, being heard makes a difference.

11. Aren’t TNF Blocker Side Effects Dangerous?

Have you looked at the side effects of any prescription drugs? Antidepressants can cause depression and mood swings, suicidal thoughts and mania. Aspirin has potential side effects. Heart disease is strong in my family so I avoid COX-2 inhibitors. There are some side effects that look very, very scary but they are truly rare. If you have certain kinds of risk factors, just like with any other drug, TNF blockers/biologics may not be the best option for you.

12. TNF Blockers Are All the Same, So It Does Not Matter Which One I Use

Many of the biologics/TNF blockers used for AS were developed for and work best for rheumatoid arthritis (RA). Why one works better on person A than person T isn’t clear. Trial and error is required. And sometimes a biologic works for months, even years, then loses its effectiveness for you. Then you need to try another. Some people find that none of them help or the side effects are too serious [see #11].

13. TNF Blocker Injections Rarely Cause Skin Reactions

No, they do. Not every time, not every person, but skin reactions do happen. Because…well, shit happens, boo.

14. TNF Blockers Can’t Help Slow Damage in AS

I’ll quote from the slide here because the research I’ve seen seems inconclusive:

Several studies have suggested no effect of TNF blockers to slow disease progression in AS. However, a 2013 study (Haroon) suggests that TNF blockers can reduce progression of spinal damage as seen on an X-ray by up to 50%. Researchers state that treatment needs to be started early and continued long-term. In the study, a benefit was seen at 4 years. Compared to patients who started treatment earlier, those who waited 10 or more years to begin TNF blockers were twice as likely to progress. In this study, NSAID use did not have a significant effect on progression; but patients may still need to use NSAIDs for pain control.

One 2013 study is not enough to say that biologics/TNF blockers “reduce progression” [not “stop” but “reduce,” slow down], meaning the fusing of the spine and other joints. Damage great enough to be seen in X-rays indicates a good amount of disease progression, beyond what MRIs can pick up earlier in the disease process.

If anyone, doctor or whoever, tells you that biologics “cure” AS or that if you take biologics or NSAIDs that “you will never fuse,” raise an eyebrow and approach everything this person says with a good dose of critical thinking and analysis.

15. If TNF Blockers Don’t Work, There Aren’t Any Other Options

There are other options. There are always other options. Don’t let yourself get blocked in a corner by someone else’s ignorance or laziness. Or prejudice.

16. There is No Way I Can Afford TNF Blockers

See #7. Often, your rheumatologist’s office will know of drug manufacturer programs to reduce your costs, and private insurance will cover biologics if you follow their dance steps. It is true that co-pays can be $50-100 or more but you don’t take biologics every day. And if they help, that out-of-pocket cost is worth it, especially if it means you can go back to work and enjoy your family and go out with your friends on a regular basis.

I fucking wish.


More, more, more—with AS or any chronic, and especially any chronic invisible, illness, knowledge and education are crucial.

GBS on AS

The Ankylosing Spondylitis Support Forums: Kick AS

Braun, J, et al. “2010 update of the ASAS/EULAR recommendations for the management of ankylosing spondylitis.” Annals of the Rheumatic Diseases 70 (2011): 896–904.Academic Search Complete. Web.

Brophy, Sinead, et al. “Fatigue in Ankylosing Spondylitis: Treatment Should Focus on Pain Management.” Seminars in Arthritis and Rheumatism 42 (2013): 361-367. Academic Search Complete. Web.

Davies, Helen, et al. “Patient perspectives of managing fatigue in Ankylosing Spondylitis, and views on potential interventions: a qualitative study.” BMC Musculoskeletal Disorders 14 (2013):163. Web.

Facebook has a number of AS support groups. Keep in mind that some online support groups are dominated by those with more severe illness, or AS compounded by other conditions and illnesses. If it’s bringing you down, take a break, find another group, or start your own.

Feldtkeller, Ernst, Gudrun Lind-Albrecht, and Martin Rudwaleit. “Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.” Rheumatology International 33.9 (2013): 2343–2349. Academic Search Complete. Web.

Hill, Hilary, Alan G. S. Hill, and Julia G. Bodmer. “Clinical diagnosis of ankylosing spondylitis in women and relation to presence of HLA-B27.” Annals of the Rheumatic Diseases 35 (1976): 267-270. Academic Search Complete. Web.

Lorig, Kate, and James Fries. The Arthritis Helpbook: A Tested Self-Management Program for Coping with Arthritis and Fibromyalgia. Cambridge, MA: Da Capo, 2006. Print.

O’Shea, Finbar, David Salonen, and Robert Inman. “Editorial: The Challenge of Early Diagnosis in Ankylosing Spondylitis.Journal of Rheumatology 34.1 (2007): 5-7. Web.

Poddubnyy, Denis. “Improving Diagnosis of Ankylosing Spondylitis and Spondyloarthritis in General.” International Journal of Clinical Rheumatology 6.6 (2011): 655-668. Medscape. Web.

Reveille, J. “Epidemiology of Spondyloarthritis in North America.” American Journal of the Medical Sciences 341.4 (2011): 284–286. National Center for Biotechnology Information, U.S. National Library of Medicine. Web.

Slobodin, Gleb, et al. “Recently diagnosed axial spondyloarthritis: gender differences and factors related to delay in diagnosis.” Clinical Rheumatology 30 (2011): 1075–1080.Academic Search Complete. Web.

Spondylitis Association of America

van der Horst-Bruinsma, Irene, et al. “Female patients with ankylosing spondylitis: analysis of the impact of gender across treatment studies.” Annals of the Rheumatic Diseases 72.7 (2013): 1221-1224. Academic Search Complete. Web.

Weisman, M. Ankylosing Spondylitis. Oxford: Oxford UP, 2011. Print.

 

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Discuss

Understanding our ethics around sexuality tells us much about who we are as people (137).


Becky Thompson. Survivors on the Yoga Mat: Stories for Those Healing from Trauma. Berkeley, CA: North Atlantic Books, 2014. Print. 

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Happy Fucking 2015

I hope the NOPD gets its shit together. especially the Special Victims Unit. Sexual assault is soul-killing enough without police being dismissive, disrespectful, hostile to victims who have the bravery to report the crimes done to them.

I hope the gentrification in Central City doesn’t drive us completely out of Orleans parish and, therefore, LA. 

I hope to have 1 single pain-free day or day with pain at something unbelievable like a 3 for a whole day. Just 1 out of the 365. [This is my 2175th day of chronic pain.]

I’m looking forward to the new Planned Parenthood.

I have no idea what the next school superintendent will be like, or how the muddle of charter school shuffles, reshuffles and closings will affect the kids and families experimented on in the long run. But I do hope some of those people who see New Orleans’ school experiment as The Future of Education will take a closer look, go to a school unannounced, talk to teachers or parents or students rather than administrators and BESE members. 

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Yeah, Why the Fuck Aren’t We?

Why aren’t we talking about the death of Victor White III? Opinion. Mwende Katwiwa. December 27, 2014.

I’ve spent 6 years living in New Orleans, but I got my roots in organizing and have spent most of my time in America in the North. In my time down here, co-workers and organizers have shared that Southern states have a reputation for being last in the best indicators and ranking first in the worst ones. As a result, what’s going on in the South is often absent in national conversations.

For example, I have not heard about the New Orleans police department (which is currently under a Department of Justice consent decree) in media conversations about body cameras despite a recent case where an NOPD officer allegedly turned her camera off right before shooting an unarmed man in the head. When I asked Rev. White if he thought being in the South had anything to do with the lack of conversation about his son’s case, he told me, “…Being in the South has a lot to do with it…it’s supposed to be common place down in the South, its unconscious prejudice…[We’re] supposed to settle for what’s presented.

The truth is, all of these things could be relevant, or none of them could. Unfortunately, there is no concrete formula that will tell Rev. White and his family how to get their son’s case more attention, and even if it did, there is certainly no guarantee that attention equal justice (just ask the families of John Crawford, Mike Brown and Eric Garner).

What is clear is that there is little space in the mainstream media for the conversations that need to happen around race, state sanctioned violence and the victims it leaves behind. Fortunately, we are in an age of technology that has allowed everyday people to amplify calls for justice in cases like Victor White’s, and that’s exactly what Rev. White is asking us to do.

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Keep X in Your Xmas

Keep X in Xmas

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I Love Me Some Samantha Power

I read ‘A Problem from Hell’: America and the Age of Genocide. Every word. The notes. The bibliography. I’m amazed and pleased she’s lasted this long in the Administration. 

And if you want to talk genocide or Rwanda, which I read a little too much about, hit me up. I’ll get Power’s book out, my hardcover, and my Rwanda books. We can move on to fatal child abuse and I Survived next if you’re up for it.

Evan Esnos. IN THE LAND OF THE POSSIBLE. The New Yorker, December 22, 2014.

In the acknowledgments of “The Audacity of Hope,” published while Obama was in the Senate, he wrote that Samantha Power “combed over each chapter as if it were hers.” At the time, she was a foreign-policy adviser in his office. Eight years later, many aides have left Obama’s Administration, but Power endures, in a role that is roughly equal parts envoy, protector, and, as she puts it, “pain in the ass.”

In the senior ranks of an Administration that is often disparaged as a shrinking corps of fawning courtiers, Power is known for pushing unpopular ideas. “People call her the activist-in-chief,” Madeleine Albright, who served as Secretary of State under Bill Clinton, told me. Jake Sullivan, who headed Hillary Clinton’s policy-planning staff and later served as Vice-President Joe Biden’s national-security adviser, said, “More than other individual actors, Samantha is somebody who will encourage, cajole, push, and prod the whole system: State Department, Treasury Department, Defense Department.” A bureaucrat who is reflexively against the consensus runs the risk of being ignored. But Secretary of State John Kerry told me that Obama does not expect to see everything the way Power does: “I’m confident the President put her there and nominated her because he wanted that.” He went on, “He may not agree with the point of view, and the point of view may not carry the day, but it becomes part of considering what’s out there.”

Because of youth, gender, or disposition, Power has often been underestimated. Gérard Araud, the French Ambassador to Washington, who previously served at the U.N., told me, “I was expecting this sort of N.G.O. girl, considering her past, considering the book she wrote. Actually, she’s a nice mixture of liberal interventionism and Realpolitik.” A senior Administration official said, “It’s easy in some ways to dismiss someone like Samantha Power. Oh, she cares about the marginal, vulnerable, and oppressed! But what she’s managed to do is link the marginal, vulnerable, and oppressed to core national-security interests of the United States.”

In the culture of the Administration, where overwork is a status symbol, Power projects harried busyness but not despair. Sunstein told me that, “for someone who wrote a book about genocide, she may have the most mental health of anyone I’ve ever known. She’s deeply non-neurotic.”

It’s impossible to talk about Power without noting that she looks like nobody else in the Cabinet, or anybody who has ever been in the Cabinet: the height, the hair, the booming voice. At a cocktail party where a photographer was taking pictures of guests in pairs, a U.N. veteran slinked away, whispering to me, “I don’t like to be photographed with her alone, because I look like a midget.” She played basketball and ran cross-country in high school; now she plays squash with Sunstein. She stalks down a hall, head bowed, with such pace and purpose that I once watched her entourage almost follow her into the ladies’ room.

Today, more than six years after a word nearly cost her a career in government, Power exhibits a kind of post-gaffe stress disorder. Fiery and profane in private, she tends to be mind-numbingly dull on the record. When I asked her a benign question about what she’d learned working for the Administration, she said, half-jokingly, that she had no concise answer “other than ‘Don’t trust the press.’ ” If she doesn’t like a question, she squints, pauses, and then parses it into as gentle a query as possible. When she appeared on “The Daily Show” last month, Jon Stewart set her up to make an easy crack about Congress. She replied, “We are hopeful that we will see Congress act in support of the effort we are undertaking,” leading him to remark, “That was super diplomacy. That was Ambassadorific.”

Last summer, as ISIS made rapid gains, Power’s role in internal debates took a turn. She argued for a series of disruptive steps, beginning with the peaceful removal of Iraq’s Prime Minister, Nuri al-Maliki, because his presence made other Arab states—including Saudi Arabia, Qatar, and the United Arab Emirates—unwilling to coöperate. A former official described the sequence that Power promoted as follows: “Produce the transition of power in Iraq, produce the coalition, produce the train-and-equip, then put all these pieces together to push ISIS back on its heels.”

When I put that idea to Power, she said, “I can be a pain in the ass, and that’s what he wants. That’s what’s so amazing. There are plenty of people out there who could check the conscience box.” She went on, “There are milder personalities that could create the illusion of inclusion, and spare you the headache of argument and counter-argument, and President Obama did not choose that milder version.”

She told me, “As time wears on, I find myself gravitating more and more to the G.S.D. people”—the “get shit done” people, a term favored by Susan Rice. “We’re racing against the clock here to get as much done as we can. So when you run across people who know how to be bureaucratic samurais, or are especially persuasive in their diplomacy internationally, spend more time on those relationships, and on brainstorming with those individuals, to achieve a common purpose. Principles and positions only take you so far.”

 

 

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hctiB G: What You Might Do

originally published Jun 4, 2013


 

This is not about education or NOLA so if that’s what you’re looking for, stop here and go read the Lens or Education Talk New Orleans, etc.

If you read 1585 over at b2l2, you know why this isn’t about public education and how scarce that topic may be here for a while.

____________

One night, in February 2007, I was introduced to a handsome, brooding, aloof, chain-smoking French guitarist called Gautier at a gig in London. Sparks flew. He visited me in Brighton two weeks later, proffering a typically Gallic shrug when I told him about my illness. I had been told that the effects of this drug on a growing foetus were unknown, so I mustn’t get pregnant; add all the post-surgery scar tissue and the fact that I could barely look after myself and having a child was not an option. Gautier was unfazed, while I was becoming used to having decisions made for me.

I flew to Gautier’s home town in France for his 30th birthday in March. He proposed that weekend. We married on an extraordinarily sunny day in September at Brighton’s Royal Pavilion. A cocktail of prescription painkillers enabled me to stand in my four-inch heels during the ceremony. He already thought me beautiful; it was my determination, I think, that he was beginning to admire.

I’ve gotten direct and second-hand commiseration, concern, sympathy, empathy, virtual pats on the arm or back, and it has been a pleasant surprise and soul-warming. I’ve also gotten and heard, What can I do? Tell me what I can do. Really, let me know, anything. That’s been…heartening. But also a dilemma.

Part, in many cases all, of the motivation behind these questions and semi-requests is sympathy, empathy, humanity, lovingkindness. It’s something you hear, fortunately, but never often enough, when you are seriously, acutely ill or chronically ill; people want to do something to not feel useless or powerless and to show that they really, deeply care and would’ve said all these things earlier if only they had known. Those who are closest know that there are many things that you can no longer do or find difficult or can’t manage for all kinds of reasons, or only because of the sometimes-overwhelming nature of your illness/condition, and that you need help of some kind, of many kinds, and the nuclear family can make help hard to get and desperately needed—there’s a lot more to do when only a small number are there to do. And my spouse is working hard to pick up my slack and be supportive and no day has enough hours.

Here are some things folks with chronic/invisible illnesses could use some help with but are too proud/embarrassed/self-conscious/thoughtful and loving to actually verbalize to ANYone:

  • Offer to pick up some groceries rather than do the cooking. Many times people with illnesses have restrictive diets, so they may rather have some fresh fruits and vegetables than that casserole. Or ask what kind of meals she is eating and then freeze some of these for her to have on hand.

You might also offer to come over and help cook up something to freeze.

  • Take the children out for a while so your friend can get some rest. Plan something special for the children and before you drop them off at the house, pick up a small “something” that will make their parent smile like some fresh flowers or balloons.
  • Look around her home and see what needs to be done and then make an offer to do it. Do the tree branches need trimmed? The toilets cleaned? The carpet shampooed?
  • …Rent her a fun movie and then drop by later to return it to the video store.
  • Ask the person’s spouse how you can help the family. The spouse may be more willing to give you specifics about the family’s needs….[How to Help a Loved One with Chronic Illness—Lisa Copen]
  • Offer specific forms of help – “I’m going to the grocery store, do you need anything?” or “Can I do some laundry for you?” Any number of household things, your friend might need help with. Offer to take care of it
  • ….Volunteer to watch his or her children. Take the kids out for ice cream or to a movie to give your friend some peace.
  • Offer to watch his kids during doctor appointments. It’s often hard to find so many babysitters, and taking kids to an important appointment isn’t always an option.

And it’s good enough to hear/see twice—

  • …Ask the person’s partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores….[How to Help a Friend with Chronic Illness]

And “How are you?” and “How are you feeling?” are often loaded questions a person with chronic illness may just not want to get into.

Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and your friend doesn’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?” [How to Help…]

The hardest thing to accept is that you may not be able to help, at that moment, for that thing, for more than a small moment of time or other than to be a caring witness.

The chronic nature is hard on the sufferer/patient and just as hard, but in different ways, for the witnesses.

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