The Handiest Girlie Of All

Columnist Frank Bruni: For a Disabled African,Doors swinging open

Like many college freshmen, Energy Maburutse is adjusting to a new world. For him it’s not merely strange. More like wondrous.

That ceaselessly humming appliance in his dorm-room window? In Zimbabwe he had never seen an air-conditioner. That sweet treat in the student cafeteria? Frozen yogurt is another first — and one reason he has almost gained his freshman 15 already. He now weighs about 80 pounds.

Most amazing to him is the electric wheelchair in which he spends his waking hours. It’s nicer by far than any from his past. Because of it and the ramps and automatic doors at Lynn University here, he can move his hunched, twisted body from place to place without constantly asking for help. That, too, is a revelation.

“I can’t stop smiling,” he told me. “I’m free.”

To meet him is to get a crucial reference point for what we in America call hardship and an example of how profoundly a life can be changed by the right intervention and the right determination. His is a miserable story that became a miraculous one.

He was born 21 years ago in a rural village in Zimbabwe that still doesn’t have electricity or plumbing. Crippled, he never walked, so his mother would carry him four hours to the nearest medical clinic. It was a trip they made often, because his bones kept breaking.

The clinic’s workers berated and even slapped her, certain she was being negligent. In reality Energy had osteogenesis imperfecta, known as brittle bone disease, but it wasn’t diagnosed until he was 5.

He didn’t know there was such a thing as a wheelchair until he got one two years later at a school for disabled children where his mother, intent on his education, managed to place him. The school was far from home. Saying goodbye, his mother told him: “Make me proud.”

He was at another such school, King George VI, in Bulawayo, Zimbabwe, when my friend Elinor Burkett, an American journalist, happened to meet him in 2006. The school’s band, Liyana, caught her attention and deeply touched her, and she got to know its members, including three disabled boys who played marimba — Energy, Goodwell and Honest.

They confessed a fantasy: college in America. It was like “an ant dreaming of becoming King of the jungle,” Energy wrote in a recent class assignment.

Burkett connected them with the United States Achievers Program, administered by embassies. It helps disadvantaged foreigners apply to, and get scholarships from, American universities.

Each boy was admitted to a school, and Burkett lobbied each school for as much aid as possible. She hit up friends, strangers and foundations for the additional thousands necessary for the boys’ living expenses, a process she’ll repeat until all three have diplomas.

People are generous when faced with concrete situations rather than abstract causes. At Lynn University faculty members and students made sure Energy got a television and a mini-fridge. One of Burkett’s friends pays for his iPhone. His wheelchair was donated by UCP Wheels for Humanity; United Parcel Service delivered it free. His Kindle he won in a card game.

Around campus almost everyone greets him by name. He stands out, given the big chair and tiny body in it. His legs are stuck in a lotuslike position; he can’t straighten them all the way. He has no idea how tall he is.

Over the years his spine has curved badly. Some of his vital organs are compressed. With painful corrective surgery he could live a long life, and he hopes to get an operation this summer, from a doctor at Johns Hopkins Medical Center whom Burkett took him to see. Now that he has medical insurance through school, it just might happen.

He studies hard and frets all the time. He can’t fail, not if he wants to realize his goal of a job as a human rights advocate — maybe with the United Nations, maybe with Unicef — and of some sort of arrangement by which he can live in America or anywhere but Zimbabwe, where there are no ramps, astronomical unemployment and unfathomable poverty.

He told me that he’s surprised by the casual work habits of many of his fellow students.

“Americans are so relaxed,” he told me. “So rich.”

He pointed to a mop leaning against his room wall. Like most mops in this country, it can be wrung by a sliding mechanism on the handle. He thinks that’s hysterical — absurd. In Zimbabwe everyone wrings mops with their hands.

He had just returned from a class in which he’d given a presentation on global warming, a phenomenon he hasn’t thought much about. In Zimbabwe other issues, like hunger, crowd it out.

I asked him if anything about his new life disappointed him. He stared blankly at me. To him, the question made no sense whatsoever.

NY TIMES

UCP Wheels for Humanity

Me, Michele and Our Migraines

I found how Judith Warner explains about Bachman & her having migraines and how she deals with them can be looked at in many different ways in how we deal with life's various debilitating health issues. When one enters the arena of "politics and running to work for us the citizens of the united states," I give props to those who are being open about a health issue (mental or physical) if its used in the way of not letting it beat you down. How will Bachman deal with our enormous world of issues and not have to close her eyes each time she is stressed?

By Judith Warner 

IS our problem with Representative Michele Bachmann’s migraines that she has them, or that she takes medication for them? Is she a strong stoic who, despite debilitating pain, does what she must to serve her constituents, or a woman who, every so often, when things get to be a little bit too much, has to lie down in the dark, while the world waits outside her closed door?

I too suffer from frequent migraines. Like Mrs. Bachmann, I take preventive medicine and other drugs to tame migraines when they strike, and I have, on occasion, ended up in the hospital. Severe migraines are less headaches than total-body cataclysms; sound and light are unbearable, movement is all but unendurable and blinding pain is accompanied by vomiting that can go on, every five minutes or so, for hours. Yet I do not believe that Mrs. Bachmann’s migraines, in and of themselves, should be viewed as a disqualifier for running for the presidency. Migraines are largely treatable and can be “controlled” through medication — as Mrs. Bachmann said in response to the Daily Caller article that revealed her condition earlier this week.

What Mrs. Bachmann does, however, to control her headaches, how she responds to them, thinks of them, lives with them, is something that voters should pay attention to. While there is much about migraines that will forever elude her control — weather changes, for example, can trigger terrible headaches — managing migraines involves a lot of meaningful decision-making. And those decisions can speak volumes about who she is as a person and how she might deal with the stresses of the presidency.

Voters have not been provided with the kind of information that would give a clear picture of how Mrs. Bachmann manages her condition. Her campaign permitted her son, Dr. Lucas Bachmann, a medical resident at the University of Connecticut, and her brother, Dr. Paul Amble, a forensic psychiatrist at Yale, to say that she takes medication to prevent migraines, as well as pain and antinausea medication when they occur. But so far it hasn’t revealed the details of her preventive treatment — and has done whatever it could to divert attention from the fact that such treatments often consist of first-generation antidepressants and other psychotropics.

It’s not surprising they’re being so coy. There’s an enormous stigma attached to mental health problems, and migraines, with their association with depression and anxiety, their well-known link to stress and their history of being dismissed as a disease of neurotic women, very clearly carry the taint of psychiatric illness. For someone who has co-sponsored legislation aimed at combating perceived overmedication, the risk of being identified as “on meds” is serious.

This juicy angle was, of course, what The Daily Caller was counting on when it ran the anonymously sourced migraine story, calling it in a headline the discovery of a “stress-related condition” with “heavy pill use” and burying in the eighth paragraph the fact that the condition was a matter of migraines. There’s perhaps as great a stigma now about taking medication for a brain-related disorder as there is about having that disorder in the first place. Pill-popping is seen as a sign of weakness, a refusal of responsibility, a sort of self-perfecting hubris — particularly among Mrs. Bachmann’s own conservative Christian base.

Despite its sensationalism, The Daily Caller story brings up valid questions, and the Bachmann campaign doesn’t get anywhere by ignoring them. During all my years of migraines, I’ve talked to many other women with the condition, and found that the ways in which we deal with it reflect deep truths about ourselves. I know that I could have fewer headaches if I took higher doses of preventive medication, but I won’t because it makes me gain too much weight. One of my friends hates doctors — they make her feel judged and controlled — so she soldiers on in pain or uses over-the-counter medications, something migraine specialists say can cause even more headaches. Another woman told me that she spends two weeks of every month in bed because she hates taking pain medications.

This isn’t a question of blaming the victim. But the choices we make in self-care reflect how we handle and view ourselves in relation to the world around us. I began to take proper care of my condition after I had to pull over onto the shoulder of Interstate 95 to vomit into a snack bag mid-migraine, terrifying my daughters. (You can’t drive from Washington to New York with your eyes closed.)

I’m not a doctor, but reports that Mrs. Bachmann’s condition had her admitted to an urgent care facility three times in six months suggest that she is perhaps suffering more than she has to. It’s fair to ask: Is she getting the best possible care from doctors who practice mainstream science? Does she fully acknowledge the reality of having a chronic disability by regulating her diet, sleep, exercise and stress levels, as frequent migraine sufferers must? Or does she refuse to acknowledge her limitations?

In the absence of information about the preventive steps she is taking to, as she puts it, control her migraines, we are left with the impression that it’s the migraines that control her.

Judith Warner is the author of “We’ve Got Issues: Children and Parents in the Age of Medication.”

 

ny times