Health

This category contains 9 posts

All My Skinny Friends Are Dead

This is a real quote from a real person who, when she got hungry in the middle of the night, got up to fix herself a “little plate,” and was a little proud of it, too.

Ask my dad. It was his mother.

My Grandma Bel loved to cook (as I do) and loved to eat (as I do). Too much of either of these 2 hobbies ‒ let alone both together ‒ can get you into too much trouble.

(Don’t try this at home, but she also smoked for 50 years, never exercised a day in her life, typical of women of her generation, and lived to be 87.)

Flax, fiber, and all those other ffffffffoods just make me sad. Same with those grassy drinks that taste like I fell face-down in a putting green.

Then someone sent around this photo and commentary and suddenly I felt a whole lot better.

Now, it’ll be awhile before I’m 51, but who do I want to look like when that time comes? The woman who recommends colonic irrigation, or the woman who recommends passion-fruit mousse?

Everyone in the UK knows Nigella Lawson, but she’s a different kind of food celebrity than the pompous Gordon Ramsay or the breezy Jamie Oliver or the mama’s boy ‒ in his case, that’s a compliment ‒ Raymond Blanc.

(If you don’t think you have the time or the skills to cook a French meal on a weeknight, try Chef Blanc’s Bresse Chicken with Red Wine Vinegar.)

This quote is from the forward to one of Nigella’s books: “I am not a chef. I am not even a trained or professional cook. My qualification is as an eater. I cook what I want to eat – within limits.”

Now, there are some people for whom limits, however loosely defined, work fine. How lucky is that. Then there are others (of us) who best put our formal training to use mostly by feeding other enthusiastic eaters.

Which I don’t mind at all, so come on over, prepared to eat your peas.

We don’t need to be told by President Obama to eat our peas. It’s all about how they’re prepared. Only in the UK does the waiter give you a choice between “garden peas” and “mushy peas” and people actually order the latter on purpose.

Personally, I like all vegetables, including lima beans, collard greens, and ‒ wait for it ‒ rutabagas. Okra any way but stewed. Cauliflower minus the cheese, cheese sauce, or cheese-flavored bread crumbs. (One chef friend, formerly of the Four Seasons New York, oven-roasts cauliflower and broccoli flowers with olive oil, salt, pepper, and lemon slices.)

But the world doesn’t come to an end when you eat that hamburger at the summer barbeque. As long as it’s only one ‒ hint: if you’re the BBQ operator, you’re too busy to eat ‒ and you skip the mayonnaise.

The world will, however, come to an end the moment you put one of those egg-less, cheese-less, why-bother meat impersonators on the grill. They sell a scarily similar product in the tile repair department at ACE Hardware.

I completely respect people who avoid meat for religious or health reasons, or out of social conviction. However, even if a veggie burger is labeled “healthy,” please read the ingredients carefully. In addition to vegetables and grains, you may get methylcellulose, also known as food additive E461, a non-digestible chemical emulsifier used in shampoo, toothpaste, and paint.

You may also get evaporated cane juice, which is just sugar. Actually a little sweeter than sugar, but at least it’s a real food…and thus perfectly legal for prepared foods labeled “organic” to contain it.

So, your choice is not only meat vs. vegetables, it’s also meat vs. sugar.

(Aside: I think a great solution to prison overcrowding would be to sentence convicts to being Lifetime Vegans with No Possibility of Parole. Ugh. Send me to a real jail.)

The “all my skinny friends are dead” quote was born when my grandmother was diagnosed with cancer. The treatment caused her to lose a lot of weight…and her trademark fiery red hair, too, which was actually worse. Her theory was that if you have some extra weight to lose, chemotherapy or radiation doesn’t leave you looking like the emaciated woman in the photo above, Scottish TV health guru Gillian McKeith, whose best-selling strategies have been repeatedly debunked by clinical nutritionists and food scientists as phony and dangerous.

On the other hand, if you run ultra-marathons and have 8% body fat, you don’t have much leeway. (My grandma would be ultra-proud of my sister, then, who claims to run only when chased.)

Now, the possibility of getting cancer does NOT excuse any of us from being height-weight proportionate, no matter how much it hurts (and you have no idea). But in Grandma Bel’s case, diverging from the mean hurt less than usual.

And it was incredibly interesting how true her comment was, thinking back on her close circle of friends and what happened to them, versus to her, who had not only beaten back cancer, but also, despite admittedly a few too many of those “little plates…”

…lived for 20 more years afterwards.

Jill’s Sugar Therapy

Chapter 2 of this blog’s sweetest love story:

One of the first pieces I ever wrote, one of the top 5 most widely read (and re-published) posts last year, was An Alzheimer’s Love Story. The true story of a friend of mine, a woman of great wealth and privilege, who found herself as the sole caregiver ‒ for a decade ‒ of her husband Bernie, who had severe Alzheimer’s disease.

How she coped, mostly without support. How she came out the other side grieving and exhausted. How, despite everything, she began to feel whole again, even blessed.

Since some time has passed since Jill’s husband died, many readers have emailed me over the past year to find out what happened to her. Especially those who are facing similar care-giving experiences for loved ones living with Alzheimer’s, but also cancer, multiple sclerosis, dementia, Parkinson’s, diabetes, and emphysema.

I’m just getting started.

I had no idea there were so many caregiving and hospice scenarios out there, nor any real sense of how much elder care ‒ especially at-home care ‒ can cost, both in dollars and cents and in mental and physical energy. Some people who wrote to me are looking at likely far more than a decade of care, some for more than one parent or loved one, and are already raiding their 401Ks and college funds.

And it’s early days yet.

(I wrote another piece about the elder health care crisis in China, which the one-child policy and diminishing public health options make even more acute. This, under communism!)

It’s always been Jill’s purpose to help other families facing situations like hers: no idea where to turn, no idea how they’ll manage. Since Bernie’s death, even while she was still struggling to find her own footing, Jill volunteered diligently for Alzheimer’s support groups.

She still does.

So, here’s an update I think you’ll find equally inspiring. Anyone who’s panicked about having to start completely over in their retirement years, this story is for you.

After losing almost all her life savings to Bernie Madoff and the recession, and twice surviving cancer, Jill started a bakery.

Prior to this, she and I had some long conversations in email about what work direction she should take. Given Jill’s artistic and social gifts, and literally a world of contacts, she had many options.

And, at the same time, few options.

Re-enter the corporate world after 3 decades away? Unlikely. Start a business? Capital, capital, capital.

But you also need intangible qualities not every entrepreneur has, but she does, in plenty: mental strength, determination to succeed, and a passion for the work, even the not-so-fun parts.

Providing the work didn’t compromise her health regimen and she could do it ‒ partially, initially ‒ at home, with low operating expenses and no employees. (Careful: a bakery can be a low-margin, brutal-hours business. Let’s run some numbers.)

We’d met in an art class in Italy and bonded over food in France, so beautiful culinary concepts were high on our list of options to discuss…ideally over something.

People who read this blog regularly know that I’m a pesto and Parmigiano girl. Sweets don’t do a thing for me, especially chocolate. Investing in a bakery would be a purely mercenary endeavor. But for Jill, desserts are bliss.

Sweets are therapy.

Jill started in her own kitchen…dogs snoozing, music blaring…baking breads her mother used to make at home in working-class New York. Chasing away stress and worry and getting her head in gear for the next step.

Then she branched out into pastries and found them easier to make than she remembered, even after not seeing the inside of an oven for a good many years.

She baked and baked and baked. And gave away and gave away and gave away the proceeds to people she knew: for gifts, for barter, for no reason at all.

Which made her very popular, although if you met her you’d agree: she doesn’t need baked goods to be that.

Then one day, she was making some berry coconut cupcakes. A friend stopped by to say hello, and tried one.

Any chance you can make me 3 dozen of these? Today?

Thus, the bakery was born.

Jill now makes truffles, Mandelbrodt (think almond “biscotti,” which in Italian means “baked twice”), apple torte, decadent cheesecakes, even organic granola… More than 20 delightful treats, not counting made-to-order items for parties.

True to her French couture background, it’s a specialty bakery, with prices to match.

She sent me photos of a presentation she did recently for a potential client, a week’s worth of marathon baking for 150 people. Result: she landed a contract with a year-round farmers market.

Can you say expansion?

I got an email from her last week about French macarons. How do you get them that consistently perfect shape if you’re doing them by hand and not with a machine?

Practice.

Sorry, Jill: there’s no trick to perfect macarons. Spread parchment paper on a bunch of baking sheets and pipe 50 macarons to a sheet. Every day for awhile. You’ll get there, I promise.

That’s something Jill understands perfectly, being a fashion designer by profession: precision and consistency is what makes great artistry marketable.

I have no doubt she’s toiling away at those macarons right now. Sheets and sheets of 50 to a sheet until she gets them exactly right. Make some with lavender, I told her.

They’re traditional in France for Mother’s Day.

Crossing the Parent Picket Line

Up until recently, I’d only ever heard of parents going on strike against their own kids.

In the war over chores, it’s who wants certain household chores done and sees the value in doing them vs. those to whom chores are assigned, who hope they’ll miraculously get done by elves or…hey, how about those cute little I-think-they-were-mice singing “Whistle While You Work” in Cinderella?

Or, by dragging my feet so long the chore hopefully gets “overtaken by events”?

Parents’ statement of labor action: until you clean your rooms (under the bed, too), take out the recycling, and walk your dog ‒ on which basis we got him in the first place, remember? ‒ no dinner will be cooked in this house.

Your choice: step up or eat cereal…every night, for as long as you can hold out.

Because, however long that is, we can outwait you.

Meantime, be thankful we’re not asking you to cook for us! (But for kids like me who go to Le Cordon Bleu when they grow up, this is FUN FUN FUN and we’ll volunteer for this “punishment” anytime.)

But parents picketing other people’s kids? To keep them out of school?

Worst yet, the object of this protest is only 6 years old and has done nothing other than develop an exceptionally life-threatening peanut allergy. Serious enough not only to ban peanut products at school, but also to bring peanut-sniffing dogs into the school to identify peanut residue on surfaces.

Here’s what students in this girl’s class at Edgewater Elementary in Volusia County, Florida were asked to do to keep her safe:

Task #1 Wash their hands. (Call me crazy, but I just can’t see any downside to extra hand washings for 6-year-olds.)
Task #2 Rinse their mouths. (Here’s to fewer expensive pediatric dental visits!)

Claims that students were made to wash out their mouths with soap turned out to be hype, but if they’re asked to use mouthwash, that is an issue…because it contains alcohol and most kids that age haven’t quite mastered the not-swallowing part.

Me, I’m allergic to mint ‒ I even wear gloves to handle mint leaves in the kitchen ‒ and organic/“natural” mouthwashes all contain peppermint oil.

Imagine you protect one child from a potentially fatal allergic reaction by doing something that seems healthy and helpful, but in fact causes anaphylactic shock in another child, for a different reason!

Proof that it’s important to chase down unlikelihoods before setting broad school health policy, even when complying with state or federal law.

However, the picketing parents’ main objection is to the time it takes to comply with these safety procedures.

True, takes time to get 25 1st graders to do anything, let alone thoroughly and let alone something they’re probably not excited about doing in the first place. Let’s say 1 hand washing and 1 mouth rinsing plus the round-trip to the bathroom take 15 minutes to accomplish.

Twice daily? 30 minutes. (The parents say it takes 100 minutes. The kids aren’t scrubbing for surgery!)

However, that is 30 minutes per day shaved off classroom instruction time when school districts nationwide are declaring bankruptcy…

…and California’s austere 2011-12 education budget, for example, might well require a $1,000 reduction in spending per child and 30 fewer classroom days per academic year.

The Edgewater school administrators rightly state that under the Americans with Disabilities Act, they are required to accommodate this student’s peanut allergy and no-one, least of all other parents, has any legal right to insist that she be home schooled.

(However, under pressure from the parent picket line, the school is “relaxing” its peanut policies, saying they may have interpreted the ADA requirements too broadly.)

Thinking outside the box… Remember past budget cuts that eliminated most health education from the public school curriculum? Why not use these allergy prevention exercises to recapture some of that learning?

You could teach hygiene, which every 6-year-old I know could stand to learn a little more about, and how the human body works: age-appropriate reasons why some people’s bodies can’t accept certain foods and other things and what those people do to stay safe (and how we can help).

There’s one more elephant in the room.

Little kids slip up. They forget. They don’t do things perfectly.

What if one of those kids accidentally takes a sibling’s backpack to school and in it is half of a forgotten Snickers bar? The allergic child goes into anaphylactic shock and has to be hospitalized, or dies.

That’s a tremendous burden for a 1st grader, putting the life of a fellow student in his or her hands. Every day.

Nobody would ever forget a tragedy like this: not the parents of either child, nor the staff, nor the school’s other parents, who’d be all over the media saying, ”I told you so.”

Least of all the child him- or herself.

“6-year-old’s innocent mistake takes the life of a classmate.” Imagine that headline hanging over your head your entire life.

Ironically, it’s often the parents beating up the teachers ‒ or, rather, the teachers unions ‒ for not wanting to give life-saving assistance to a child who might die before 911 help arrives.

Stated reason: we don’t want to be held legally liable. (You’re already not.)

Real reasons? Because it’s inconvenient. Because it’s not my job. Because sometimes it’s yucky.

(Nobody enjoys administering Diastat ‒ rectal Diazepam gel, in FDA-approved packaging pre-dosed for use by any layperson ‒ to stop a child’s potentially brain-damaging seizure while paramedics are still en route. As you continue to fight Senate bill SB 161, please ponder: what if it was your child?)

While my dog in this fight is epilepsy, the same dilemma applies to young children with diabetes, asthma, and other serious chronic health conditions.

School is probably one of the few public places that can be made safe enough for this Florida girl, until she’s quick enough with her EpiPen. Meanwhile, she can’t sing “Take Me Out to the Ball Game” during the 7th inning stretch next to thousands of baseball fans eating peanuts and Cracker Jack. She can’t watch a movie, in case other movie-goers are eating Reese’s Cups. She can’t even go to a public pool…because there are peanut-laden candy bars in the snack machines!

No, no, no.

Since this child’s world is so unfairly limited right now because of her allergy, why not be kind and flex a little? Unfortunately, the picketing parents’ world is limited by choice, because they’re thinking only of themselves.

Nice role modeling.

You can be sure that if it was their son or daughter with a life-threatening allergy, they’d never consider voluntary home schooling for other families’ convenience. They would’ve already filed lawsuits against all kinds of people for harassment and discrimination.

These parents argue that this 6-year-old needs to learn how to keep herself safe from nut allergens in the real world, so she might as well start now. I argue that these parents’ children need to learn how to deal with disabled people in the real world, so they might as well start now, too.

If they don’t think so, then they’re nuts.

Dancing With Widows, Act 2

Before the intermission yesterday, we wrapped up Dancing With Widows, Act 1. Welcome back to the Kenyan Public Health Theatre today for Act 2.

OK, let’s say you manage to avoid being sexually assaulted by a stranger – or, worse yet, by someone in your circle, someone you know well − and you also choose to avoid engaging in voluntary unprotected sex. What if you’re married and faithful but your husband isn’t?

Abstinence obviously isn’t a realistic option. Condom use is rare (and strongly resisted by men, not surprisingly). So, at best, even if you’re successful at everything we’ve talked about so far, you’ve addressed only 2/3 of the HIV infection picture.

In some villages I’ve been, the HIV infection rate among adults is 30-40%. Not to mention children born HIV+ who develop AIDS by pre-school (“baby school,” as it’s called there).

I remember one sweet little child, Charity. (Many Kenyan children have Biblical names.) Her mother told me she was 4 years old, but she looked much younger. While I was sitting on the ground, she climbed into my lap, arms around my neck.

I wondered whether it was a blessing that she and her mother, Constance, also with full-blown AIDS, might pass away together.

After dancing with the widows, we ate the delicious lunch they prepared. They got a huge laugh at our expense as we cringed during the chicken butchering, which erased any residual doubts about chicken originating from Safeway.

(It doesn’t take long to get so used to the local cuisine that even when visitors “treat” you to outrageously expensive meals in Nairobi, you look at the menu and everything sounds way too rich, so you say to the stunned waiter, “Excuse me, do you have sukuma wiki (a traditional Kenyan dish made with kale, tomatoes, and shallots)?” I once walked away from a restaurant salad bar at an exact replica of California Pizza Kitchen, not because I was afraid of eating the fresh produce there, but because the number of choices was overwhelming and most of them weren’t even salad.)

Then, after even more singing (for which, thankfully, I have some minor talent) and dancing (and realizing my dancing skills were so sadly deficient that years − even decades − of public health work in Africa were never going to fix that), we drove away to the next village. Charity ran alongside the car, slowly, for as long as she could, waving.

I know by now she’s long gone, as is her mother, as are many other women and children I met that day.

All over the countryside, I saw what I thought were ruins, common in Europe. Buildings in their prime 1,000 or more years ago that have been taken by time and weather, but remind us of the golden years. I came to understand that in Kenya these are not ruins; they’re modern family homes begun but never finished because the father died of AIDS first.

I’m convinced that if African women formally organized, they’d take over the world. They’re that tenacious, street smart, and able to work miracles with nothing. These attributes have been borne out of necessity. That’s why some of these “ruins” in Kenya are being finished. In the style of an Amish barn-raising, these widows pool their meager finances and sweat equity and are finishing these houses, one brick at a time.

These HIV+ widows know that, since treatment is too far away and too expensive to contemplate, they might never see the completion of their own homes. However, they labor willingly on the homes of the other widows, knowing that these women may very well take in their children when they pass away, because their deceased husbands’ extended families will be interested only in the healthy ones.

Violet’s home was first, because it was the closest to completion and she’d managed to keep a tiny savings hidden from her in-laws, who’d arrived on the day of her husband’s funeral to carry away all of her household goods: furniture, dishes, animals, and everything else of value. They weren’t successful in taking “his” children as well only because Violet physically resisted, which must have taken them so by surprise that they backed off.

I went to Violet’s home for tea and biscuits. In the sitting room was a lone chair, which she offered to me. The dirt floor was immaculately swept. There were lace curtains over the window openings.

Violet has only 3 children of her own because her husband had several wives before her and passed away before they had any more children. By some miracle, she’s HIV- thus far and is stepmother and “auntie” – in the loosely-defined African sense − to 22 children among her circle of friends and relatives.

22 orphans or soon-to-be orphans, in just one group of widows, in just one small district in Kenya.

Violet, for all her weighty responsibilities, thinks people who try to give their children away to foreigners “to give them a better life” are wrong and misguided. Kenyan children, in her view, should be raised at home, in their own villages, with their own people. (If there’s opportunity for higher education abroad, that’s a separate issue.)

With regard to HIV/AIDS and everything those acronyms imply, it just can’t be true that the only way things get fixed around here is for foreigners to do it for us.

I find her views both sadly atypical and downright encouraging.

My theatre critique: all the condoms in the world and all the vaccines in the world will ultimately be ineffective against HIV/AIDS in Kenya until and unless there’s a change in thinking, followed by a change in behavior. By everyone.

Violet is a seamstress and she’s sitting on that chair now, measuring me for a dress. (I still have it.) She’s making it from bright yellow fabric.

The same fabric as the dresses the dancing widows wear.

Dancing With Widows, Act 1

Why doesn’t somebody offer a dual Masters of Public Health/Theatre Arts degree?

Kenya has taken HIV/AIDS education to the stage and it has the potential to make more of a life-saving difference than all the condom distribution programs to date, and all the immunization programs in the future.

In a country in which not knowing how to sing and dance is a serious disability, musical community theatre might be a more effective health education platform than any public service announcement, any sermon from the pulpit, or any lecture by a Western doctor who’s passing through for a week and knows nothing about Kenya…or about Africa, for that matter.

The message from one Kenyan woman to another, in particular one HIV+ Kenyan widow with infected children to a younger HIV- woman who still has a chance, is crystal clear: unprotected sex causes HIV, which causes AIDS. Either you get it by having unprotected sex yourself, voluntarily or involuntarily, or you get it from your husband who has had unprotected sex. Either way, you die, and probably give it to your child, who also dies.

Harsh, but at this point Kenya desperately needs harsh.

Here’s how things play out today, says the play, and here’s how they need to play out tomorrow so that you and your children live. Dance, sing, and learn.

The most striking thing about these HIV/AIDS theatre works is how the women portray the arc of seduction. Nothing like dancing with widowers, I’m sure, although the story starts out exactly as predicted and you don’t need to understand a word of the local language to follow this plot.

First, “I think you’re beautiful and I’m going to follow you around everywhere.” OK, fine. Next it’s, “I’m begging you and touching you any chance I get. You’re reluctant, but you’ll come around.” We get the picture so far.

At this point, the female actors in this play come to the predictable fork in the road. Option #1: keep running away, keep saying no, and eventually he’ll give up and go bother somebody else. She hopes. Option #2: say yes, but insist on protection. Right. Even in the play, these lines are spoken with irony.

But the fact that they’re spoken AT ALL speaks volumes for the urgency of HIV/AIDS education in Kenya and the acknowledgement that exceedingly blunt, normally taboo messages are sometimes the last hope of turning around a caravan of a country speeding headlong towards a public health disaster.

The play continues at the point Option #1 goes bad. She’s in danger and if it were any of us, we’d be calling the police, calling CNN, calling somebody.

The humiliation. The threats. In the USA, we have legal terms for these behaviors: “sexual harassment” and “stalking.” Also, “criminal complaint” and “restraining order.”

(Amidst policy discussions about instances of unfair and unequal treatment of women in America − some absolutely legitimate, others just plain whining − never forget: we’re the luckiest women on the planet.)

Or maybe we’re in criminal territory immediately because this is an ambush. I’m going to take you anyway, so you might as well go willingly, or at least pretend like you are. I’ll do everything I can to get you alone, where nobody can hear your screams.

(This is a favorite tactic used against young girls during typically very long walks − several miles − to and from school. I know 4 girls to whom this happened: three 6th graders and a 5th grader. One girl is an exceptional athlete who outran their attackers to get help. Unfortunately, help arrived too late for the other girls. Heartbreaking, and heartbreakingly common…and a sure way to end a girl’s education much too early because the parents understandably take their daughter out of school rather than risk her safety again.)

Afterwards, if you have the money to go to a clinic, which is unlikely, you’ll never have the courage to tell anyone there what happened to you, although they’d figure it out anyway and not be surprised. As a bonus, I’ll make sure your extended family hears rumors of all the gory details, so they’ll shun you.

Even better if I get you pregnant, so you’ll have a reminder of me for the rest of your life. It’s my goal to make you unmarriageable − or divorceable − and to turn the wonderful experience of motherhood into something you’d do anything to forget.

While rape is on the books as a crime, in real life it’s not a punishable offense in Kenya. Any man accused of sexual assault can walk in the front door of the police station with a few hundred shillings – 80 shillings is $1 USD − and walk right out the back door. Everybody knows this, the rapists most of all.

Imagine, too, the retribution on the woman or young girl and her family after a “false arrest.”

There are people to whom this reality doesn’t apply. I know some of them. Without exception, they’re prosperous people who can afford a higher quality of life, a more protected lifestyle. There would be serious repercussions in a community if somebody assaulted a government minister’s daughter, or the wife of an important businessman providing jobs and foreign investment.

That perpetrator wouldn’t even make it to police station.

Jacob, our driver on theatre day, was a biology undergrad driving a makeshift taxi to pay his tuition and hoping to meet some future mentors in the field of public health, which he did. Although he knew we needed some freedom to do the work we were in Kenya to do, he remained militantly militant about our safety.

Even if you’re well-traveled in the developing world (we were) and can handle yourself (we could), you’re always a juicy target – and your mere presence paints targets on your local friends, too − if your supplies and equipment have significant street value. Even in a city of 200,000 people, it takes less than 5 minutes for everyone in town to know you’ve arrived.

If it makes you feel any better, it’s rarely cold-blooded murder. It’s usually an armed robbery gone awry, in the context of – once again – ineffectual, corrupt law enforcement.

But trust Jacob on this: you’re just as dead either way.

Can we stop here? No. Can we walk over there by ourselves? No. Can we meet our (local) colleagues across town for dinner? After dark? Are you crazy?

Absolutely not.

Sometimes, when he had to step out of the car for a moment, he’d say, “Do not get out of the car, keep the doors locked, and do not roll down the windows.” (Fine advice, except that many of the windows didn’t actually roll up.)

At first, some of my foreign colleagues who were new to the country thought this was unreasonable, bordering on extreme. Come on. The whole world isn’t out to get us. They shortly came to realize what the rest of us already knew: they should obey Jacob unquestioningly.

I also came to realize that he’d put his life on the line if it meant protecting mine. It was truly humbling.

After a short (1-day) intermission, we’ll be back with Act 2 of Dancing With Widows.

Friends of Bill Are Friends of Mine

(…and no, I’m not talking about Bill Gates).

Please tell us a story, they said, about people who surprise us in a GOOD way.

Anyone who’s been reading my blog lately knows about our friends who weren’t friends, but instead were Islamic terrorists masquerading as friends, breaking our hearts.

I received responses from readers all over the world, who’d never met those people, but were heartbroken anyway, mostly for me for needing to write posts like that at all, but for themselves, too: for somehow never seeing these things coming, but dreading them all the same, or for being constantly under suspicion, no matter what good you do in this world.

It’s just as heartbreaking to realize that none of us can see an end to the number of people willing to lay waste to their lives in adoration of a jihadist killer from the backwater of the Middle East, who wouldn’t even recognize them if he saw them on the street.

Over and over, I read the words “you just never know,” and not in a good way. See what happens to us, the ultimate dim-wits, when we trust people?

Yet we go on trusting, because our national motto is “Think Positive” and we aren’t allowed to go off to kindergarten until we learn that there’s some good in everyone, if we just look hard enough. As adults, every time we’re at the end of our rope with that naïve line of reasoning, we get surprised…in a good way, in a way we never expect.

I believe more than ever that those words “you just never know” are true. I also believe that there are an equal number of people out there who turn out to be better, kinder, wiser, more loyal, and truly more wonderful than we ever could’ve imagined and who we would’ve missed out on entirely had somebody not taken that chance on what you can never know about people.

It was a long-ago colleague, and his friend of friends, who showed me that beautiful truth of trust.

Among our employer’s business associates was the general manager of a professional sports team. Our employer bought a block of tickets every year, for performance rewards; people who preferred cash bonuses but loved sports never complained. After the games, this GM would then invite these employees to meet the players.

I was lucky enough to be in that city on game night and tagged along for the field trip.

My colleague was a member of Alcoholics Anonymous (AA) and when I met him had just celebrated 1 year of sobriety. Although AA is by definition anonymous, he talked openly about his alcoholism and the damage it had done to his career and his family, which he was trying to repair, but knew deep down that, despite fulfilling Step 9 (making amends) of the 12-Step Program, some things lost were going to stay lost.

When I met the players – great guys, all – it turned out that my colleague already knew one of them very well…from AA. This player was also a recovering alcoholic and was equally open about his struggles with addiction and sobriety. These two introduced each other to me as follows: this athlete was my colleague’s AA sponsor.

This was a guy who made untold millions and was part of one of the most successful sports teams of the decade. During the season, he was interviewed constantly. His young fans mimicked everything he did (and didn’t). He went to events he didn’t like and pitched foods he didn’t like, either. (Too much sugar, fat, something. We big guys have to watch our weight, too.)

Yet somehow, hidden for years, was a terrible secret that his teammates, his agent, the franchise management, even his extended family, never guessed: he went home and got drunk, every night. I think nobody guessed because it seemingly never affected his sports performance. I don’t know how. But imagine what kind of player he would’ve been had he been sober, given that he was a phenomenal player as a full-on alcoholic.

Another reason nobody guessed was because he was subjected only to drug testing for illegal and performance-enhancing drugs, never for alcohol, and he was (obviously) functioning just fine at work. At home, though, where his immediate family knew perfectly well what was going on − but you can’t make people do things they don’t want to do, especially somebody his size − things slowly but surely fell apart.

This athlete got sober after wrecking his something like $200,000 car, while driving when he wasn’t drunk. He could’ve replaced it the next day, in cash.

But he didn’t.

Instead of to the car dealership, he went to AA. Not to a celebrity detox clinic; to his local chapter down the road. At AA, he was just a regular guy, another new friend of Bill W. (who co-founded AA in 1934 and remained sober for the rest of his life), who stood up in front of everybody and admitted that his family had been right all along, and they’d been right to leave him when he’d gotten dangerously out of control, as opposed to just annoyingly out of control, like he’d been for years and no amount of nagging, cajoling, threatening, and pleading ever made a dent in that thick head of his.

Fast-forward some years, when my colleague went to his first AA meeting. For the first couple of weeks, he said nothing and just cried. His alcoholism had caused him a brush with the law and on the judge’s orders he was required to attend one AA meeting a day − for a long number of days, I can’t remember now how many − or he’d be in real trouble, I mean it, and I don’t want to see you back in my courtroom ever again unless it’s about something good.

That’s how the larger-than-life pro athlete met the ever-shy middle manager not much more than half his weight. Nowhere on this planet, one would think, would these two people ever meet, let alone become fast friends.

So, this famous man became my colleague’s AA sponsor. He accompanied him to those first AA meetings, which he still attended for his own sake, and when the next season began, he took my colleague’s frantic calls in the middle of the night, sometimes every night, wherever he was.

He was extremely careful about anyone finding out about this. Not for his own sake, since he led a very public life; for the sake of his friend, who didn’t. He didn’t want any “credit” for what he was doing because somebody else had been his sponsor back in the day, when he was off the wagon more than he was on and didn’t think he could make it, even one day at a time.

We didn’t talk about the score (they won), the game highlights, or even the latest gossip about his team (and that could’ve easily occupied most of the evening). We talked about addiction, getting sober, and making it stick.

I’m not really a sports fan and told him, my apologies, but I’d never seen you play before today (and might not again afterwards, either). He wasn’t the least bit offended.

Underneath that infamous “game face” and the bravado for which he was paid more than handsomely, he was a modest, old-fashioned guy, really…from a modest upbringing in the modest suburbs, who to even his surprise had made it big. In that vein, he’d had an XXXXL letterman’s jacket custom-made for himself, very like the one he’d worn in high school. I kind of like thinking back on those days, he said, when I played with my friends for fun, before I got into booze and lost some of the best years of my life.

On the front of his jacket, in place of his own name, he’d had embroidered, “Friend of Bill W.”

If you’re an alcoholic who’s seeking help and would like to find an AA meeting near you, or for more information about alcoholism and recovery, please visit Alcoholics Anonymous. If you’re a family member or a friend of an alcoholic, please visit Al-Anon/Ala-Teen.

You Can Drive Me Everywhere

Recently, a friend told another friend who told his wife who told me that she was worried that she’d been talking about my epilepsy in public. I passed a message back through the grapevine that only people who’ve been living under rocks don’t know I have epilepsy. A good friend and I did the 2009 Walk for Epilepsy in Washington, DC. Colleagues past and present lobbied with me on Capitol Hill for disability legislation and health care reform. I write an article in every issue of the Epilepsy Journal.

I don’t lead with it, but it’s not a secret.

Usually people find out I have epilepsy because they ask me to do something that requires driving. Unlike in Europe and Asia, where it’s not a given that adults are licensed to drive, let alone own cars, in the USA it’s just assumed that if you’re over 16 and not a drunken fool, you have a drivers license.

I don’t say “I can’t drive” anymore because I’ve found that people interpret that as “I don’t know how to drive” and answer, “Well, you can learn!” and start suggesting driving schools. Or, they think I mean “I don’t have a car” and they’ll offer to loan me theirs. “I don’t drive anymore” makes sense only if you’re 90 and your adult kids took your keys away (good call). “My doctor says I can’t drive right now” gets you off on the right foot with people.

Why can’t I drive? Because I don’t want to hurt you, or worse, by having a seizure at the wheel. And – oh, by the way − I might hurt myself, too, but that’s the lesser offense.

People often say, “I know somebody with epilepsy who takes medicine and can drive.” I’m sure that’s true. It depends on a number of factors. One, what type(s) of seizure(s) you have. Two, how effective your medication is in managing your epilepsy. Three, how long ago you had your last seizure. States have different requirements for this. Some require that you be seizure-free for at least 6 months, but when you re-apply, the questionnaire asks you whether within the past 3-5 years you’ve had any periods of sudden unconsciousness.

Oh, yeah. Several.

It also depends on whether you live in a mandatory reporting state. If you do, the physician is legally required, at the risk to his or her medical license, to rat on you to the DMV. In other states, it’s on the honor system . Given the kind of cramp non-driving puts in your style, you can imagine how many honorable seizure sufferers there are out there. Actually, you don’t have to imagine; you read about them in the paper after they kill somebody.

However, even if your state says you’re OK to drive, your doctor may say you can’t and your doctor trumps the state. You need a letter from your doctor to get your license back and your doctor may, for whatever reason, withhold that letter for an indefinite period.

My doctor has this incomprehensible way of calculating when I can drive again. It’s some kind of goofy algorithm that incorporates the number of months since my last seizure plus a certain safety buffer plus the square root times the coefficient of the something something… Whatever. Bottom line: I can’t drive for 34 more months. It’s no accident that only prison sentences are ever calculated this way. Until then, SmartCarUSA, who inexplicably got my name on their mailing list, is going to keep torturing me with announcements of each new model.

I voluntarily took myself off the road before I knew why. The reason: I had a seizure while riding my bike in a residential area and woke up on the front lawn of a stranger’s house, not knowing how I got there. I’d been “limp and unresponsive,” as my doctor describes it, for 1 to 3 minutes. That’s time to do an awful lot of damage in the left lane at 75 miles an hour.

Here’s one thing that makes me crazy, though. While I’m a danger on the road right now and I know it, so are people at risk of heart attacks, diabetic comas, dementia, and any number of other conditions. Nobody tells them they can’t drive. 3 million Americans have epilepsy; 70 million Americans have heart disease. Do the math. You’re much more likely to keel over of a heart attack than to have a seizure while driving, although unfortunately the end result might be similar. Don’t even get me started on the chronic alcoholics who are arrested over and over again and yet somehow always make their way back behind the wheel.

For years before I ever knew I had epilepsy, I used to say that, if I ever became rich and famous, my very first splurge would be a car and a driver. Look at it this way: I got half my wish!

For more information about epilepsy, visit the Epilepsy Foundation.

The Outer Perimeter of Normal

Feed the hungry, the 1st Commandment according to Rabbi J.

Rabbi J was our boss at B’nai B’rith Hillel, where I worked when I was in college. In the Hillel kitchen, we had a standing rule, blessed by him: feed anybody who was hungry, no matter who they were.

You know how moms and grandmas are. They obviously need new glasses because they’re continually telling us we look frail and don’t even think about refusing seconds. When we come home for a visit, what’s the first thing they ask? “Are you hungry?”

Rabbis are the same way. Especially for Holocaust survivors and their children, and those who grew up during the Great Depression, because they remember what it’s like to do without. If they have anything to say about it, nobody will feel that way again, ever.

There was this young man – a little older than me, but not by much – who came by our kitchen often. We’d make up a plate for him and hand it through the top half of the back door, which we kept open for ventilation.

Many homeless people came by Hillel regularly to get food. A few women, but mostly men. Judging by their appearance and demeanor, they’d lived on the street for many years.

This guy was different. He was sort of lucid and very, very polite. He knocked, even with the window open. He called us, all teenage girls, “ma’am.” He said please and thank you more than was necessary. I noticed he even stood back a little, seemingly because he knew he and his clothes smelled bad.

I also noticed that he was so hungry he declined the plastic cutlery we offered and shoved the food into this mouth with his hands.

I wondered what could’ve happened to someone my age – in a prosperous Northwest city, only a few blocks from a fine university – that he’d be begging for food and sleeping outside in the rain.

Turns out, he was the son of a professor there and he’d been a promising undergraduate not long before. But his mental illness and his unwillingness to get help for it, compounded by uncharacteristic alcohol and drug abuse, had caused this alarming and rapid slide into homelessness, hunger, and…his parents worried…danger and maybe death.

His father knew he frequented Hillel for handouts, and – having been a board member once upon a time, before I ever worked there – knew that meant at least somebody friendly was seeing his son more often than he did.

Time and time again, the father tried to get his son help. But the law says that only if someone is endangering themselves or others can you put them on an involuntary, 72-hour psychiatric hold. After that, the person has to agree to be committed to a hospital for treatment.

I understand why laws like this exist. In America’s not-so-distant past, people sometimes committed other people to mental institutions because they were inconvenient or embarrassing, not because they were sick. If you had a wife you couldn’t divorce, a gay or lesbian child who refused to stay in the closet, or a family member with a mental or physical disability you didn’t want anyone to see or know about, you could ship them out on a one-way ticket to the “funny farm,” as they called it in those days, where they’d be subjected who knew what kinds of barbaric treatments. You could be intentionally oblivious and never have to deal with that “defective” person ever again.

How anybody could do something that evil to a love one is sickening. Unfortunately, we know it did happen – to many, many people – until the laws were changed in the 70s.

However, the problem with today’s system is that the very mental illness for which people badly need treatment tells the person suffering from it that they are fine, even when they’re far from it.

(I realize there’s a percentage who are homeless due to severe financial circumstances or by choice, but that’s a blog a social worker needs to write. I’m writing only about people who are chronically homeless due to mental instability that’s serious enough to be obvious to the public.)

I graduated from college and didn’t think much more about homelessness as a social issue. In Seattle, it’s too cold and rainy to stay out in the elements for long, so while I understood that many homeless lived downtown under bridges and in abandoned buildings, I rarely saw them for myself.

Then I moved to Paris and got a wakeup call.

Near my apartment in the Marais, there’s a Franprix that was built right up to the public utility boundary. The full lengths of the sidewalks around it are covered with open grates. Hot air comes out of those grates…and that’s where the homeless sleep. Many many. Every night.

La Croix-Rouge (Red Cross) minivans drive by every so often and check on the homeless sleeping there. In the dead of winter, they sometimes have to call the paramedics to take someone to the hospital who’s suffering from hypothermia and frostbite.

Same rules, though, they told me early on: you can’t make the homeless accept help. If they’re being violent, you call the police, but anything short of that, you leave them alone and make sure they don’t die of exposure.

I had some experience with people made temporarily homeless by natural disasters, but I had no experience at all with permanently homeless people whose mental state prevented them from changing their situation, or letting anyone else change it for them.

The summer of 2003 was one of the hottest summers on record, all over Europe. Paris temperatures rose to 44C/111F. Simply put, it was unbearable.

I didn’t have AC in my apartment and lived on the 6th floor. Le Cordon Bleu wasn’t air conditioned, either, and it was 100 degrees before we turned on the ovens. I snuck into the sous-salle (basement) and the walk-in fridge any chance I got. Off hours, though, I needed a better plan.

My better plan was BHV, a department store something like Macys. They have the loudest, COLDEST air conditioning in the city. Since BHV has 7 floors, I simply circulated around the various departments, buying little things I needed anyway (to stay legit), until my body temperature dropped to a reasonable level, or until it was late enough that my apartment might not feel so much like a microwave. The next day, I’d start the process all over again.

One thing I did know about mental illness: one symptom of it can be insensitivity to temperature. Ever noticed homeless people overdressed for the weather? This might be to keep others from stealing their belongings, but more than likely they’re wearing a parka, wool hat, and scarf in the heat of summer because they simply aren’t aware.

There was a homeless woman who sat out in front of BHV all day (in the brutally hot sun) and all night that whole summer. One Saturday morning, I was particularly desperate and was at the BHV door right when it opened. There she was again. It didn’t look like she’d moved at all from the previous night. Part of me worried she might be dead.

Then she moved. I asked if I could help her, if she was hungry. (At that moment, I thought of Rabbi J and knew somehow that, even after all those years, he’d remember and be proud of me). She didn’t answer.

I did my “shopping” at BHV for a few hours and left, planning to “shop some more” later in the day. The homeless woman was sitting in exactly the same position. Her eyes were closed. But while I was gone, someone had placed beside her a burger, fries, and drink from Quick (the French equivalent of McDonald’s) – laid out on a white serviette, just as you would in a restaurant – and someone else had propped a large umbrella over her, shading her face from the sun.

An Alzheimer’s Love Story

Warning: this is a love story.

I don’t usually write love stories. They’re mostly about people you couldn’t possibly hope to meet in real life and are pretty much required to contain lots of mushy, romantic stuff I can’t stand. (Anybody who breaks into my house while I’m gone and strews rose pedals everywhere is in serious trouble.)

I’m making an exception because this is a love story everyone should hear and I was lucky enough to have heard it first-hand.

The moral of this story, in advance: the next time you think, “If only I could trade places with somebody else,” remember Jill and Bernie. (I’ve changed their names and a few identifying details to protect the family’s privacy, but otherwise their story is intact.)

Jill is a native New Yorker from the Lower East side, one of a few daughters (and a few sons, too) of a working-class father, untraditional for his time, who didn’t mind that none of his sons were interested in the family business, nor his daughters in marriage to sons of other fathers with family businesses. He told all of his children to follow their talents, minds, and hearts, wherever it led them.

So, Jill went to art school, studied fashion design, and became a stylist at Vogue. If you looked at the credits in back issues from the 80s, you’d find her name featured prominently there.

She dated a number of men during those years, and had even been engaged once, but at the end of the day never felt she’d met the right person to share her life.

Through the course of her work, she met Bernie. He was from the Upper East Side, a short cab ride but a world away. He was in his 60s, wealthy (understatement), and widowed after a long and happy marriage. Jill was a little more than half his age.

Admit it: you’re thinking “trophy wife,” minimally “opportunist.” Keep reading.

Life was idyllic for the first dozen years of their marriage. Jill retired from the fashion industry – although kept her hand in by continuing to support the work of talented new designers – and together she and Bernie “lived the life,” as she describes it, shuttling between their various homes around the world in their private jet.

The greatest regret of his life, Bernie had said, was the number of airplane tickets he and his first wife purchased but never used, vacations postponed again and again and ultimately never taken because he was always working. He swore he wouldn’t repeat that mistake in his second marriage, and, despite remaining Chairman of the Board of the company he’d founded years before, kept his word.

Then, in unlucky year 13, Bernie started doing funny things. Like going to bed with his overcoat on, wallet in his pocket, presumably in case he had to get up and go somewhere in the middle of the night. Like walking to the newsstand and ending up at a friend’s house 2 miles away. Like returning colleagues’ telephone calls multiple times, not remembering their previous conversations.

When former president Ronald Reagan passed away, there were many profiles in the press of his “long goodbye,” the decade of twilight between his diagnosis and death from Alzheimer’s. Bernie’s illness followed almost the same schedule and thus Jill, who like the rest of us had read Nancy Reagan’s story, knew how it would play out.

For the first 5 years, Jill cared for Bernie with the help of a housekeeper who – Jill laughs about it now – did little actual cleaning, but rather kept an eye on Bernie to make sure he didn’t burn himself in the shower by forgetting to turn on any cold water, for example.

During one difficult period, if Jill left the room even for a moment, Bernie became despondent and paranoid. Once, when she needed a root canal, she talked the oral surgeon into doing the procedure in the middle of the night while Bernie was asleep, so he wouldn’t realize she was gone.

After more than a few close calls, Jill realized that Bernie’s illness had progressed to the point where it was no longer safe for her to care for him without professional help. Moving him out of the family apartment just wasn’t an option. Money was no object, but how and where to find someone who’d care as much as a family member? Jill rode around in a taxi for hours, all over the city, crying. By pure coincidence, if you believe in coincidences, the taxi drove past an Alzheimer’s hospice center. In an industry not known for employee longevity, those same 3 home health nurses Jill hired that day cared for Bernie throughout his illness.

Jill considers herself lucky because, unlike some Alzheimer’s patients, Bernie didn’t confuse night and day, become violent, or suffer any serious secondary illnesses. But, for the last 5 years of his life, Bernie didn’t recognize Jill, or anyone else.

No, folks: Jill did not have a prenuptial agreement. She could’ve put Bernie in a nursing home, bought her own private island, and lived in maximum luxury with whomever, forever. Even Bernie’s grown children, who liked Jill and appreciated what she was doing but stayed away because they couldn’t bear to see their father in that condition, wouldn’t have blamed her. She told me, “I did not even consider it.”

Bernie died last fall. Although Jill isn’t observant, her religion traditionally calls for a year of mourning. This she has chosen to do. She cannot talk about Bernie without tears in her eyes. She calls it “the best 23 years of my life,” despite the fact that, for the last half of her marriage, she was alone in it.

For more information about Alzheimer’s disease and caregiver resources, contact the National Alzheimer’s Association.