ANOTHER BIG DAY: BEGINNING IN CLINIC AND OR AT MCH AND THEN A FIELD TRIP TO BOR TO VISIT THE JONGLEI GOVERNOR, AND THEN A REAL FIELD TRIP TO A LEPER COLONY TO DRESS WOUNDS AND TO ATTRACT SUPPORT FOR THEM; THEN I DELEGATE THE DRILL ON TUTORIALS TO JOHN SUTTER FOR THE NIGHT WITH THE INDIGENOUS STAFF EACH ASSIGNED TOPICS AS I DROP OFF IN BOR TO SPEND THE NIGHT TO BE READY TO TESTIFY IN COURT IN AJAK’S SUPPORT ON THE MATTER OF THE INJUSTICE IN HIS ABSCONDED BRIDE WEALTH
February 15, 2011
On the run this morning, and I do mean morning rather than the middle of the night under the cold glare of moon light as I had the prior run, I stumbled through a whole mob of meerkats! These are mongoose relatives and are in a comical social unit always playing games like otters and standing upright to peer around as if nosy. I hope I may have even got a few photos of them as they cavorted their way out of my path as I also photo’d the sunrise over the tukuls with the kites swooping in the pink dawn sky.
Today may be a different sort of day—much like yesterday in its start, but then an official field trip in a return to Bor for a medical diplomacy meeting with the Jonglei Governor, before a more important extension of our trip to go to the Leper Colony, now neglected with no obvious support from any agency. Established by the British a century ago, and supported by the Dutch until the signing of the CPA (Comprehensive Peace Agreement) all support stopped with the CPA and they have been on their own and completely neglected since then. One of our reasons for going is to bring in bandages and to dress the wounds to limit their inevitability of auto amputations. I had given a complete outline of the disease leprosy last night and left an “indelible mark” here in Werkok. That is because I used the back side of the PCC Sudan sign as a “white board” and marked the curve of multibaccillary Leprosy on the left side and Paucibacillary leprosy on the right in a Sharpie. SO, for all time they will have this single slide critical to their understanding of this slow motion human communicable disease, which is more a result of the body’s reaction to it than to the damage inflicted by the mycobacterium itself.
“COLONIES”—“LEPER” AND “OTHERWISE”
“Leper Colony” is an ideal term to make obsolete. Empires fall, times change, wars ebb and crest. The “Other World” is fickle and easily distracted into self-absorption. As I had outlined in three generations for this group of people along the White Nile, they were dependents on the mighty Raj of Victoria, who had a keen conscience on the ostracism of the “Leper” based in the Scriptures and the Old Testament penchant for identifying the patient with the disease. [No modern thinking person would ever, of course, inflict the poor victim with our fear of the scourge they bear, would they? Except, for every new one and all the old ones in turn that have ever come to be recognized, from venereal diseases to AIDS, to poverty itself….]
So, the infantilization of dependency has loitered long after the colonial era has been disabused of the idea that someone somewhere else knows what it best for you. As listed the British Empire had its sunset on the Union Jack, and the Dutch, largely for their own Biblical reasons took over the care and feeding of the people in this Leper Colony. In parts of Malawi I had written of the leper colonies and the “Leper Door” which was bricked up at Embangweni when the people there had not become more enlightened, but moved the problem away by re-siting the colony so it would not have to be so obviously next to them. In Old Fangak I had been treating lepers, many of them the same ones, for each of my many visits there without any evident “colony” to which they were assigned. They seem to have been “mainstreamed” largely by collapse of the colonial system, not by loss of fear of their dreaded contagion.
Lepers are people that should be isolated, then cared and fed as necessary but out of contact, as specimens in a zoo might be for those of us who have passed well beyond such an era of plagues and pestilences. Really, there is no need for Leprosy Colonies as there now are no needs for TB Sanatoria, with modern multi-drug therapy (including, for males only, the resurrection of the dread drug “Thalidomide!”) which makes these patients ALL into the uninfective “paucibacillary” patients of either one of the Mycobacteria. They do not need colonization; they need “cottage industries” jobs, commerce, and integration into a community. In this way, no one can take credit for their care as a charitable indicator of their helping the neglected and down-trodden, and many of the “colonies” are kept around as historic pieces of nostalgia—as much for the dependency of the inmates as for the self-congratulations of the society that instated their care. That they should become rivals competing in the open market with those of us “Clean” folk is a bit much.
“Unclean!” The call must be uttered in advance of any progress for the leper or for leprosy. Renaming it “Hanson’s Disuse” does not de-mystify it, any more than Ghandi’s re-naming “outcasts” “Children of God” changed their status in Indian caste systems. The idea that all Lepers are a contagious threat to those of us more righteous citizens and the threat is that we, too, could look like them with body parts missing and eaten up by the ravages of painless passage.
Leprosy, is, in fact, contagious, second only to measles at its peak in contagion in a high reproductive rate of the disease, and a single sneeze can put billions of mycobacteria into aerosolized spread. But, that is only the kind of leprosy that is “multibacillary, the stage at which it is least apparent and the fresh new case stage we will not see today. In fact, the rare patient who could develop the multibacillary stage of the disease (formerly called ‘lepromatous leprosy”) is one who is at severe nutritional and immunologic compromise. Only those with other diseases already known and much more lethal such as AIDS would be so vulnerable. As the disease progresses, all the mycobacteria are cleared and the “infectious disease is long gone when the inflammatory one lingers on.” The reaction of the body to the mycobacterium Leprae is so strong as to eradicate the organism which tries to hide for its last holdouts behind the nerve sheaths of the blood brain barrier and the neurolemmal sheath in which the leprae hide out for their last stand. The body keeps on attacking where it once was even though the infectious disease invading organism has been long gone, often decades later. These “reactions” are what deaden nerves. It gives the thickened nerve roots palpable behind the ears and the anesthetic patches in the skin which can sometimes be depigmented as well. Then one day a foot drop is noted. Next month a “claw hand develops.” All this occurs painlessly.
In fact, painlessness is the point. It is because of insensate limbs that minor traumas are not avoided or noted and the thorn in the foot becomes the deep erosive ulcer which finally becomes the autoamputation. In the “Gift that Nobody Wants” Paul Brand described Pain as the thing that allows us to defend ourselves from the slings and arrows of daily living. Without that pain as a signal, patient’s burn, cut, stab, injure themselves all unconsciously, especially on those interfaces that are closest to the environment and with the heaviest pressures—the feet, the hands, especially the digits.
So, today, after formalities with the Governor (which I have repeated so many times consisting of effusive thanks for my services and a reminder wish list of those items still to be delivered in his wish to become my dependent as though I were a UN or NGO agency with mega-largesse) we are going to visit the outcasts. They have a big fence around them. In fact, the only piece of modernity there is the fence. This, I presume, is not to prevent me from cutting my way in! These are the paucibaccillary lepers or Tuberculous leprosy victims of long dormant Leprosy now suffering from the ravages of self-inflicted unconscious limb-threatening minor trauma which if not dressed, padded, cared for, will result in amputation, with or without medical surgical help. So TR is gathering padding and gauze and dressing materials and any old shoes that can be filled with sponge rubber. And this Modern Swift Response Team is going to journey across millennia to address an ancient scourge—the Slowest Motion Infectious Disease with the largest of the inflammatory reactions which self-destructs in reaction. Perishes this is an analog of our Peace Initiative in South Sudan as to prevention of self-immolation in response to recognized wrongs done to one, and the subject of my own “day in court” in Bor. We may be able to export this model to the Middle East in the Palestinian crisis, or every other fratricide worldwide.
“SOCIAL SERVICES” FOR THE NEW INTERNALLY “LOST BOYS & GIRLS” IN CONFLICT ZONES OF SOUTH SUDAN CATTLE CULTURES
In the other activity that will take me to Bor, I will try to attack another social leprosy of a different kind, including my own. My response to the wrongs inflicted upon Ajak was to have at the perpetrators, and settle this swiftly—the most common reaction all through South Sudan for any grievous wrongs done to another. Such a wrong was done just two nights ago, and Ajak was in the band that talked the relatives out of revenge and will have recourse to the constituted authorities systems here. I will now do the same for Ajak. As he requires witnesses of the events last year in which the egregious rip off of his bride wealth occurred, I will go with Jacob and get this process on the correct path for resolution—the infamous “due process” that takes so long that tempers are flared out when resolution finally results if at all.
So also is the system of bush justice in which I will report to the Murle Commissioner and authorities and paramount chiefs that we have been troubled by the death of a woman and kidnapping of her grandchild. As vested as the Murle authorities are in the Peace Initiative they have pledged, there is no place for these perpetrators to hide in all of the bush in South Sudan. For one thing, they must surface to “fence” the child. There is a unique child protective service here that has been effective in recovery and return of such kidnapped children, five of six in recent memory here in the Bor Payam. Among the group of those active is a MURLE WOMAN. She is obviously at very high risk, but is continuing doing this as it is right. She has a network of contacts who know where and whose children have gone missing and she makes a very committed bloodhound in tracking them down and returning them out of the Murle ranks to be returned to the Dinka. I would not be selling her life insurance, but she is akin to the Imam in the Nuba Mountains who is my go-between in negotiations for release of slaves. Each is heroes who shall not be named.
So, after the OR and clinic today (which is busy because there was an announcement in each of the churches on Sunday that we were open for business) we will go forward in 1) a Bor visit for “medical diplomacy”; 2) a unique filed trip to care for the leprosy patients in the abandoned leprosy colony along the Nile; 3) the attempt to see justice take its course in the defrauding of Ajak in the clan rivalry between Dinka Bor and Eastern Jonglei Dinka which I was so closely involved with on last year’s visit. Mission to Heal is still going forward on a half dozen Peace and Justice Initiatives on top of a successful Health Care and Health Care Education mission.