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Quarterly Newsletter | ||||||||||||||||||||||||||||||||||||
To the many who have cared,
It began with a small cramp at the base of my neck. Leaning back, I powered down the laptop before me and attributed the discomfort I felt to the awkward position I had kept while at work. Unconcerned, I decided to turn in for the night. I awoke at 1:30 early the following morning, unable to turn my head in either direction without confronting considerable pain. My head throbbed with such intensity as to mistakenly give the impression that I was physically in motion, propelled back and forth by the force of the ache. Alone, I felt it best I stay put to wait to see what would come of it. My cell phone rested on the night stand beside me, well within reach, should I need to call for help. I considered leaving my bed in pursuit of something to alleviate the pain, but doubted my ability to move about unassisted for fear of falling, and ultimately decided to ride out the night. I hoped that, come morning, the pain would abate to some degree, leaving me better able to care for myself. I spent a restless and uncomfortable night, drifting in and out of brief sleep, continuously repositioning myself in the attempt to minimize the pain. As hoped, with the coming of dawn the pain had eased. I cautiously made my way to the bathroom, where I took the maximum suggested dose of ibuprofen. Throughout the night I had faced the concern that something was seriously wrong, but nevertheless convinced myself that the condition was likely muscular, for having slept in a way which exacerbated the problem. The ibuprofen proved effective, and I regained a degree of mobility turning my head from side to side with a minimum of pain, reinforcing my belief that the problem was muscular and nothing more. It was a Friday, my day off and I vowed to take it easy while pledging to monitor the situation as warranted. The day passed uneventfully, as I mostly rested. I continued to treat my condition with a more moderate dose of ibuprofen and although it continued to alleviate the pain in my neck, it did little to ease my headache. The situation remained largely unchanged on Saturday. The doctor who serves as my Guatemalan primary care physician, Dr. Sanchez, is not on call on the weekend. I decided to function as best I could during that time while changing my self-prescribed medication. My headache had worsened and, given that aspirin had only ever been the effective remedy for a headache, I switched it out for the ibuprofen. The decision proved effective. Monday morning, I called Dr Sanchez' office to set up a consultation, for I understood that I likely was not improving, but merely controlling the symptoms with the aid of medication. I met with her in the evening of the same day. She was immediately concerned. Lesions had formed around my Adam's apple, and at the base of the back of my neck. I ran a 103° temperature. Dr Sanchez suspected that I had Dengue fever, but also considered Meningitis. She prescribed medications to treat my symptoms while ordering extensive lab work in search of a diagnosis. I promised to visit a nearby clinic early the following morning. Late Tuesday afternoon, I received the lab results electronically and immediately forwarded them to Dr Sanchez. We spoke by phone shortly after. The results ruled out dengue fever but failed to provide a diagnosis. They did however confirm that I had a serious infection, as my white blood cell count was alarmingly high. Dr Sanchez prescribed further lab work. The results, available Wednesday afternoon were also inconclusive. Dr. Sanchez suggested I see an infectious disease specialist and offered a referral if needed. But I had secured the services of such a doctor in December, when one of our residents had been taken seriously ill. Dr Tobias had managed the young man's care with unwavering dedication and expertise, earning my admiration and trust as a result. I called the office of Dr. Tobias and spoke with her receptionist. It was a Thursday morning at 8:50. The receptionist returned my call at 9:15, informing me that Dr Tobias wanted me to meet her at the emergency room of the same hospital where our resident had been interned late last year. She asked that we meet at 10:30. Expecting to be admitted, I quickly made preparations for the program to function without me for a time, stuffed what I could into a backpack, then left for the hospital. Dr Tobias conducted a consultation in the emergency room. Shortly after noon I was admitted. A lumbar puncture, formerly and more notoriously known as a spinal tap, was scheduled for 3 PM, as it is the only way to confirm or deny meningitis and encephalitis, each of which remained a concern. I was placed in a private room, in quarantine. The only window faced the hallway beyond my room. Outside the window hung a blue medical garment. All staff protected themselves by donning the garment, disinfecting it both before and after entering my room. Visitors were prohibited. I drifted in and out of sleep, regularly awakened by the nurses (aides) who tended to me round the clock. I was plied nonstop with a vast assortment of medications through the intravenous next to my bed. With the exception of Dr. Tobias and a technician who early each morning entered my room and took blood to facilitate further testing, all contact with the outside world was limited to the nurses who cared for me. They worked in pairs during 24 hour shifts and introduced themselves upon showing up for work at 7 AM, then said goodbye and wished me well at the end of their shift, 24 hours later. My condition worsened on Friday. By late-afternoon my temperature had risen to 104°. One of the two nurses tending to me that day had entered my room to find me sleeping, my bedding and robe soaked with sweat. He awoke me then, handing me a fresh robe, led me to the bathroom, prepared to help me with the change of wardrobe. But I assured him that I was able to manage it on my own. Some time later, for I had overestimated my ability to work unassisted, I emerged from the bathroom to find the bed remade. The nurse had brought two basins of water, one containing ice and the other several bags of tea. A short stack of towels sat beside the basins. The nurse proceeded to tend to my fever. After dipping each of the three towels into the basins, one was placed on my forehead, the other two on my torso, just beneath the pits of my arm. Much of the time was spent refreshing each of the three towels every few minutes, then returning them to my body. During the rare moments when he was not occupied, my nurse would quietly sit in a chair beside my bed, his hands folded, resting on his lap. Compelled by the calm but purposeful way with which he carried out the task before him, I observed my nurse with great interest despite the desire to close my eyes and sleep. Dr. Sanchez visited with me later that same afternoon. Results from the lumbar puncture had come back, testing negative for meningitis. The results for encephalitis were expected the following mid-day. The following afternoon, Dr Sanchez returned with what I perceived to be the makings of a smile and proclaimed that she had good news for me. Encephalitis had also tested negative, but a diagnosis - two in fact - had been obtained. I battled a herpes simplex related viral infection as well as another rare disease known as Sweet syndrome. Treatment was to begin without delay and Dr. Sanchez assured me that I would soon begin to feel better. Sure enough I did. The following evening, a Sunday, I was discharged from the hospital, accompanied by several prescriptions and a directive to rest. A month has passed since I returned home. My recovery has been gradual. The viral infection was cured not long after my release from the hospital, but the Sweet syndrome has proven to be more resistant and it is not unusual for some of its symptoms to linger for some time. Indications thus far suggest that this may be the road I face. I hope for the best but have pledged to be patient should a full recovery come later rather than sooner, encouraged by the fact that I continue to improve. Guatemalan healthcare is widely criticized and the social nets in place back home are not readily available here, leaving me at times to feel vulnerable when confronting my recent illness. Lying in bed when I was first taken ill, incapacitated and in considerable pain, I was acutely aware of how precarious a situation I faced. But I have long understood the risks and danger of living as a foreigner in an underdeveloped and violent land and trusted that, He who called me to make my home here would watch over me in accordance with His will. That same trust stood by me and kept me calm and at peace during that difficult first night and throughout the time when I was seriously ill. Hospitalized in a quarantined room, at times I felt alone. The care that I received from all of the nurses who watched over me, the great kindness that they showed me compensated immensely for the isolation I faced. I remain mindful that, although modern medicine has benefited immeasurable from the development of a dazzling array of technologically dependent treatment, caring for the sick and suffering fundamentally remains a personal endeavor. It is one where the human connection is every bit as important as state-of-the-art technology in terms of its ability to heal. For it is the human element of healthcare that transforms it from a merely technical enterprise into a sacred one, touched by the divine. I still often think of the young man who tended to my fever so attentively. His response to a 104° temperature relied on a far simpler and time-tested technique, the application of cool, moist towels to an overheated body. Effective as it was in terms of reducing my fever, it was the manner in which the towels were applied which moved me. lt was the relationship between caregiver and patient, the compassion I was shown that tended to my heart and soul, each of which were in need of care and healing, as well. I recalled that brief exchange into the night, unable to get it out of my mind. Shortly after 9 PM, I had an epiphany of sorts. Despite the circumstances I faced at the time, I had not been alone. God had continued to watch over me, both physically and emotionally, through all of the nurses who cared for me during my stay, each of whom tended to my considerable needs with unwavering patience and kindness. In the process, they had served as my companions. They had also served as God's earthly proxy, a visible, tangible manifestation of His love. Still later that Friday night, I spoke with the young man who had been assigned to me that day, for I understood that it was likely my last chance to do so. I learned that he and many other of the nurses (aides) had graduated from a program conducted by a large, nearby public hospital. He told me proudly that it was just his sixth day on the job, and that he enjoyed the work. I meant to ask his name but somehow forgot, but did learn that he was just 19 years old. I praised the care he had given me and encouraged him to always strive to show the same level of care to others which he had shown to me. Embarrassed, he lowered his head while yet holding my gaze and thanked me. I have been blessed with good health throughout my adult life. As such, my recent illness caught me unawares and gave me reason to pause, especially during the first days of my hospitalization, when it was apparent that something was seriously wrong and a diagnosis remained elusive. I came to see that I did not fear death for its own sake, but did spend much of my waking time concerned for the future of Only A Child, considering how it might best continue in my absence. Thankfully, much of my health has been restored and I am now able to complete my responsibilities once again. I tire more easily and, as such, have altered my pace to work a little more slowly when necessary. But I also experience unexpected moments of peace, refreshing me like a cool breeze on a hot summers day, encouraging me to carry on while lifting my spirits. I suspect such peace is rooted in a new found gratitude for being alive and functioning, even if not yet at full strength. I have no doubt that many of you will keep me in your thoughts and add me to your prayers after reading this letter. Thank you. The summer months are traditionally the slowest ones of the year in terms of support for charitable organizations. This past summer has proven to be no exception, at least for Only A Child. I ask that you please support our work at this time, to the best of your ability. We might well ask if anything which cannot be addressed in scientific terms is really worth our attention. Yet most things that give life its depth, meaning, and value are impervious to science. Rachel Naomi Remen, M.D. May God bless
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