Remember
the days when you didn’t need an alarm to wake up? When you woke with the sun rise, and your
body was so anxious to rid itself of sleep that it was insufferable to stay in
bed? The song in your head is not one
you heard on the radio and can’t shed, rather it’s the background music of your
life. You knew that the day ahead was
one to remember. One where you will
experience the payoff of weeks, months, or perhaps even years of planning and
anticipation. Possibly one in which you
will meet challenges or opportunities you have never had before, ones you feel
prepared to overcome, with meaningful experiences as your reward.
That’s
what this morning was like. That’s what
nearly every morning has been like during my time in Africa. At night, the darkness is absolute, an almost
palpable heaviness to the air. The lack
of sensory input gently and slowly turns the brain off. It is disarmingly relaxing, and I find myself
in bed and asleep well before I had intended to rest. Come morning, the energy of the world changes
with the sun rise. The light calls to
action dozens of songbirds and crowing roosters. You can nearly feel the world waking up, and
the call is hard to deny. Then you
remember what you’re here to do, and it really is impossible to stay asleep.
Breakfast
is eaten outdoors on well-used sofas.
The view is of a sunrise, cresting over three consecutive ridges of
mountains. Directly in front of me opens
up a field of tall grass that gives rise to a young forest. Bizarre, foreign birdcalls surround me, and
it seems as though all of nature is at play.
A bee encircles a small bird, who keeps hopping to and fro to escape his
nagging buzz. There are three wild cats
nearby; two take turns jumping at insects that chance fly too low. The third, the oldest, has slowly made her
way to sleep at my feet. The cats stop
playing at the sight of a hawk flying directly overhead. It lands on the awning
above me; its claws scrape loudly at the aluminum covering as it finds its
footing.
I
have gone to zoos before and have seen far less impressive displays of nature
than this, a routine African morning.
The
medical experience thus far dwarfs my time in Botswana. Morning starts with 8:30AM rounds. The facility has just 6 inpatient medical
rooms, each with 2 beds. Despite the low
numbers, the acuity and complexity of patients is impressive. Currently, over half of the admitted patients
are children. We spend a particularly
long amount of time with one child who became neurologically devastated over the
past three months; I come up with some answers, but without significant testing
abilities, I’ll never know if I’m actually right. The father, a proud warrior whose stretched
earlobes and traditional garb could just as easily grace the cover of National
Geographic, tears up at my explanation.
He will not be the last person to receive bad news today.
The rest of the medical load, while significant, is African-casual paced. Today, two orphanages delivered half their children to our doors, having heard that for the first time ever, a pediatrician has come to town. I see five of them today. The experience is exactly what I have come for. These boys are largely castoffs, their motor impairments a fatal flaw in a society counting on them for manual labor. Parents invest in children for the purpose of taking care of them when they're older; a disabled child is a poor investment. So they are all withdrawn and forlorn appearing at first glance. However, the way their faces light up at the sight of a five cent toy makes the thousands of dollars I paid to come here money very, very well spent.
The good news ends there, though. For those two same boys, I can make a diagnosis: muscular dystrophy. They will never walk again.
It is not all bad news, though. A large percentage of families here do get the answers they've been seeking for a long time. Down syndrome, Ohtahara syndrome; in these cases, I can offer a somewhat clear picture of the future, even if it is not the one they had hoped. For others, they get confirmation of what they had suspected: that their severely weak, "disabled" child in fact has a full mind, capable of learning.
This is no small reward. You see, schools here are very limited in their resources. Any child with any somewhat significant problem is refused entry to school. As an example, one 10 year-old boy was refused entrance to school his whole life because of a very subtle tremor, and they came to meet me to get a note saying he was medically cleared for school. After TEN years! In a more heartbreaking example, a boy with severely dystonic cerebral palsy, where he has basically lost control over all of his muscles (including his mouth and face), has a very full cognition, as far as I can tell. When I asked his caretaker what I can help with, the boy replied, "I am a cripple."
Where schools have failed, the generosity of others have succeeded. He was taken in by a Norwegian man, whose name I can't pronounce, let alone spell (it sounds like Skroli, but I'm sure there's an umlaut or two in there). He has spent every cent he owns and has raised money from Norway to build an orphanage of sorts for children like him, children with significant physical handicaps but a lesser extent of cognitive impairment. He takes them in and teaches them, not just basic schooling but also life skills, with the hopes of one day reintroducing them to their families. So far, I have seen 7 of his sickest, and have given him half the money in my wallet to continue doing what he's doing.
Were it not for the FAME clinic here in Karatu and for Dr. Mike Rubenstein, the Penn neurologist who introduced me to the facility and is here with me now, none of these neurologically impaired children would have ever found the care they need. Thanks to their charity, they are on appropriate medications now, and being cared for by people with the right mentality towards disability.
Skroli will have many more children for me in the coming days. I hope I have the emotional wherewithal to handle them, and that I brought enough money to leave with a clear conscience.
| 5 kids from a nearby orphanage, awaiting their turn to see me. |
The good news ends there, though. For those two same boys, I can make a diagnosis: muscular dystrophy. They will never walk again.
It is not all bad news, though. A large percentage of families here do get the answers they've been seeking for a long time. Down syndrome, Ohtahara syndrome; in these cases, I can offer a somewhat clear picture of the future, even if it is not the one they had hoped. For others, they get confirmation of what they had suspected: that their severely weak, "disabled" child in fact has a full mind, capable of learning.
This is no small reward. You see, schools here are very limited in their resources. Any child with any somewhat significant problem is refused entry to school. As an example, one 10 year-old boy was refused entrance to school his whole life because of a very subtle tremor, and they came to meet me to get a note saying he was medically cleared for school. After TEN years! In a more heartbreaking example, a boy with severely dystonic cerebral palsy, where he has basically lost control over all of his muscles (including his mouth and face), has a very full cognition, as far as I can tell. When I asked his caretaker what I can help with, the boy replied, "I am a cripple."
Where schools have failed, the generosity of others have succeeded. He was taken in by a Norwegian man, whose name I can't pronounce, let alone spell (it sounds like Skroli, but I'm sure there's an umlaut or two in there). He has spent every cent he owns and has raised money from Norway to build an orphanage of sorts for children like him, children with significant physical handicaps but a lesser extent of cognitive impairment. He takes them in and teaches them, not just basic schooling but also life skills, with the hopes of one day reintroducing them to their families. So far, I have seen 7 of his sickest, and have given him half the money in my wallet to continue doing what he's doing.
Were it not for the FAME clinic here in Karatu and for Dr. Mike Rubenstein, the Penn neurologist who introduced me to the facility and is here with me now, none of these neurologically impaired children would have ever found the care they need. Thanks to their charity, they are on appropriate medications now, and being cared for by people with the right mentality towards disability.
Skroli will have many more children for me in the coming days. I hope I have the emotional wherewithal to handle them, and that I brought enough money to leave with a clear conscience.
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