One mother’s story of how the Peace Corps failed her daughter

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I, Cynthia Wolf, am the mother of Meghan Wolf, RPCV who served in Malawi, Africa from May 2007 to June 2008.  Following is my rendition of Meghan’s experience in the Peace Corp and her eventual release from service secondary to the health issues she faced while in Malawi that started in April of 2008.

Meghan graduated from the University of Miami in Coral Gables, Florida in December of 2006 with degrees in Philosophy and International Studies with a variety of minors including Chemistry and French. She also studied abroad in Seoul, South Korea where her primary study was North Korean Human Rights. In December of 2006 she applied to serve in the United States Peace Corps. She did not share this information with us until after she came home following graduation.

After a long and rigorous application process, Meghan was accepted into the Peace Corps with full medical clearance to work abroad doing health development work in the spring of 2007. Joining the Peace Corp was not Meghan’s life long dream, but it was her dream to serve in Africa in a health capacity, and she saw this as being the best way to begin. Her goal was to serve her twenty-seven months of service in order to gain true ground experience, and then afterward to pursue her Masters and Doctorate degrees in Human Rights. Needless to say we were proud of her decision, but her father had a sinking feeling in the pit of his stomach that something was going to happen. I had my concerns, but could not tell her not to follow her dream, and so as we watched her walk down the tarmac at the airport on May 25, 2007.  Our 21-year-old daughter was off to pursue her dream of service to others.

She began in-country training in Malawi May 31, 2007 as a health Volunteer, and was officially sworn in after successful completion of training July 25, 2007. She was assigned the post of Muloza Health Center in the village of Maliera in Mulange District. There she worked closely with community leaders to address health issues ranging from HIV/AIDS to diarrheal disease prevention while living as an equal in the rural community where there was limited access to clean water and no access to electricity.

Meghan Wolf

Meghan served with great determination and optimism with the hope that making continual small changes, the community could progress to greater prosperity and most importantly, ameliorated health through their own hard work, dedication, and determination. She made weekly trips to report to the District Hospital Officer at the district hospital in Mulanje to discuss problems and projects underway in her village and surrounding area and remained committed to staying at her assigned post to work, thus giving up opportunities to use allotted vacation time for R&R. She made frequent 20 km. biking trips on dirt roads to teach at schools and educate the youth on infectious diseases, build student self confidence, and develop leaders among the youth. Meghan asked the tough questions, and investigated cultural practices that included the rape of young adolescent girls.

Meghan mentored after-school groups, traveled with medical personnel to outreach clinics, and advised and aided a community committee invested in making peanut butter as an income generating activity and a way to combat child malnutrition whilst continuing to develop her proficiency in the local language, Chichewa, and understanding cultural practices. She acted as a representative of the United Sates demonstrating its range of individuals in its population with the commitment to the well-being of all people and the desire to help others realize their potential. As a Peace Corps Volunteer one works 24/7 because one is always under scrutiny of the community and must demonstrate poise and work ethic at all times. In exchange the community protects you and welcomes you as one of their own.

Unfortunately, after a year of service Meghan’s experience was curtailed beginning with severe dehydration from projectile vomiting and diarrhea in mid-April of 2008. It is believed that she contracted some type of virus during a trip to Blantyre for a meeting. Upon the night of her return to her village from the city her symptoms began with projectile vomiting, fever, diarrhea and eventual loss of bowel control. She requested to leave her site to receive medical care at a hospital because she knew she would eventually die of dehydration, but the Peace Corps Medical Officer on duty denied her request. It is common for Peace Corps Volunteers to suffer from a variety of gastrointestinal problems during service, so her condition was not at all alarming to the doctors in country. Meghan was continually told, whenever she contacted the PC Doctor in Lilongwe to inform him that she was not improving and was becoming increasingly weaker, to just keep taking her salt tablets to stay hydrated.

Meghan’s condition continued to deteriorate and she was in a physical state whereas verbal communication was difficult and unclear, thus not allowing her to be her own advocate in an effort to persuade the physicians something more had to be done than swishing salt solution in her mouth. There was a point when I awoke on a Saturday morning with a feeling that I needed to contact Meghan right at that moment in time. We knew she had not been feeling well, but we had no idea about her current illness, so I got on our home computer and via Skype called Meghan’s personal cell phone she purchased so that she could receive our calls, and she could call and send text messages to the Peace Corps in-country.  Much to my surprise a man answered the phone who spoke broken English. He identified himself as one of the men from the village and he told me Meghan was very ill and several people from the village were watching over her as they were not sure she was going to live. I asked if I could talk to Meghan and he passed the phone to her. Her voice was so weak I could not understand her. I told my daughter to hang on and that I would do whatever I could to get her the help that she needed.

I then called the only number we had for the Peace Corp and that was the number given to families to call in the event of a death in the family. I called that number and pleaded with the woman who answered the phone to please call the PC Provider in the States. She said she was not supposed to call the PC Doctor, I again pleaded with her to please help us. I informed her that there were people of her village in her mud hut watching over her because they were afraid she was going to die. After much pleading by me, she agreed to make the call and told me that she could not make any guarantees that the doctor would return my call because it was not protocol. Twenty minutes later our phone rang and the Peace Corp doctor in Washington was on the phone. After I explained what was going on with our daughter he said he would contact the PC Provider in Lilongwe, and he would call me back. He did call us back and informed us that the PC Provider told him Meghan was in the hospital in Blantyre. I told the doctor that he was a bold faced liar; that my daughter was in her mud hut in her village. Had I not called my daughter and had I not called the PC Provider in Washington D.C. our daughter would have died.

I immediately called Meghan back to tell her that she needed to get to the hospital as soon as possible. Because she was so weak she instructed the people from her village how to make arrangements for her transportation to a hospital in Blantyre. She gave them money to find someone to take her by bike to the main road and then asked them to find a person with a motor vehicle to take her to Blantyre from the tarmac.  She had to pay the driver half of her monthly stipend just to get to Blantyre. Peace Corps never attempted to make any transportation arrangements for her. This was the beginning of our daughter’s life-long illness.

Meghan was transported three times into either Blantyre or Lilongwe for medical attention. She was admitted twice at Adventist Hospital in Blantyre for dehydration and vomiting. She was put on a cocktail of different antibiotics, as this is protocol in the Third World in an attempt to be “proactive” regardless of whether or not one has a bacterial infection. It is believed better to be safe than sorry. No bacterial infection was found, nor were any other diseases that were tested for. She had cycles of improvement that lasted at most a week and sometimes only a day or two. After her third time into the city with the same symptoms it was decided it was in her best interest to be medically evacuated to Johannesburg, South Africa for further evaluation. This was only a couple of weeks before her mid-service training, an event that she had worked hard to reach, and due to her departure would consequently miss.

Upon arrival in Johannesburg Meghan was taken to Kloof Medi Clinic by a Peace Corps driver for hospital admittance in order to have an upper endoscopy and colonoscopy preformed the next day. She had no contact with any other Peace Corps staff until two days following her arrival. Due to her already dehydrated state and bowel preparation for the procedures, the physician was not able to find any veins. She thus underwent both the upper endoscopy and colonoscopy fully awake, one after the other. It was a horrific experience.

Upon arrival at the Regional Peace Corps office the Peace Corps doctor was not even aware that a colonoscopy was going to be preformed when Meghan notified her of the events that had transpired. It took several days for Meghan to recover from the pain induced by the trauma. Before any physical evaluation was done by the Peace Corp MD, or any medical reports were reviewed, and after only a short conversation with Meghan, the Peace Corps doctor had the opinion that Meghan was suffering from irritable bowel syndrome caused by stress. She therefore immediately scheduled an appointment with a psychologist for evaluation.

Based upon the psychologist’s opinion that her symptoms may be related to stress and the opinion of the GI doctor concurring with that opinion (under the influence of seeing in her medical chart that she had chronic depression), she was labeled as having irritable bowel syndrome and not deemed fit enough to return to Malawi.

The Peace Corps would not allow Meghan to return to Malawi to collect her personal belongings, nor was she permitted to return to notify her village and others she had been working with. Three months after her return to the United States Meghan received a letter from her students, who had comprised an after school drama group she created, asking if they had done something wrong because why else would she leave? No one had notified the school of her departure or of the circumstances. Hence, many whom she had worked with and tried to empower felt abandoned. The Peace Corp failed to adequately communicate with the community she had worked with for a year, and which had come to depend on her presence of the circumstances of her sudden departure. This put both Meghan and the Peace Corps as an organization in bad light.

Meghan returned to her permanent residence in Nashotah, Wisconsin on June 8. 2008, to be cared for by her father and myself. Because I worked at the Medical College of Wisconsin I was able to secure appointments for her to be examined by specialists. The next day she was seen at the Medical College of Wisconsin by a gastrointestinal specialist, Dr. Venkatesan, for diagnostic evaluation. The following was her schedule for evaluation since returning to the United States.

Monday, June 9, 2008: GI Specialist: ordered CT scans, small bowel study, MRI and lab work; prescribed zofran (ondanestron) for nausea.

Tuesday, June 17: CT scans and MRI – all reports came back clear and normal.

Monday, June 23: GYN – polycystic ovarian syndrome – recommended use of birth control.

Wednesday, June 25: small bowel study – no abnormalities, clear.

Wednesday, July 9: ID [Infectious Diseases] clinic – ordered numerous blood and stool lab tests – all lab tests came back clear.

Wednesday, July 16: GI Specialist: possible diagnosis of Cyclic Vomiting Syndrome.

Monday, July 28 – Psychiatrist IBS [irritable bowel syndrome] referral – the psychiatrist could make no clinical diagnosis and did not mention anxiety or depression making any significant contribution to her new condition.

Monday, July 30: ER for fainting spells – given IV fluids.

Monday, August 4: colonoscopy – no abnormalities, clear.

Friday, August 8: ER – tremors and pain; referred to neurology.

Monday–Wednesday, August 11–13: Admitted to internal medicine; seen by infectious disease, internal medicine, GI and neurology: recommended to have autonomic testing completed.

Friday, August 22: autonomic testing – positive results for POTS2 [postural tachycardia] syndrome and small fiber neuropathy.

Wednesday, August 27: GI Dr. Venketasan: major problem with tremors; told to continue with zofran and sleeping aid.

Saturday, August 30: In contact with the Department of Labor, sp. Cindy Marshall 216-357-5387. A medical report was due for FECA claim.

Wednesday, September 10: Neuropsychology testing: no organic neurological problem detected.

Wednesday, September 17: Neurology Dr. Hung, specialist in motor movement, believed tremors related to body’s response to pain, prescribed a beta blocker.

Tuesday, September 23: Neurology Dr. Pandya and Dr. Barboi, recommended to maintain taking beta blocker, given a definitive diagnosis of Autonomic Dysfunction (Dysautonomia).

Friday, October 10: GI Dr. Venketasan – prescribed supplements, not confirmed nor ruled out diagnosis of cyclic vomiting syndrome, but recognized that many symptoms of CVS are present.

Friday, November 14: Dr. Barboi, Neurology – prescribed pyridostigmine and clonazepam and lab tests in an attempt to further alleviate symptoms. It was at this visit that Dr. Barboi (whose Clinical Specialty is treating patients diagnosed with Autonomic Dysautonomia) sat down with Meghan, her father and myself and informed us of the real realities of this disorder. He told us that in all likelihood Meghan contracted not a bacterial infection while in Malawi, but a virus that attacked and destroyed her Autonomic Nervous System. He informed Meghan that sometimes patients conditions will improve within two years to a point where the patient can lead a productive life. However, if after that two year period things have not improved then her current state of health will be her life. He was very compassionate and said there was always reason to have hope.

Tuesday, December 16: Neurology Dr. Barboi — prescribed marinol sometimes given to AIDS and cancer patients as a last resort to minimize nausea and vomiting. Massage therapy and acupuncture were also strongly recommended for pain control and nausea. Meghan tried these recommendations, but they made her symptoms worse.

Wednesday, January 7 2009: GI Dr. Venkatesan: Still confused as to why her condition has not improved, the doctor made a referral to a psychologist for further evaluation though admitted that yes, Meghan does indeed have autonomic dysfunction as well as possibly other disorders such as cyclic vomiting syndrome.

Throughout this time of evaluation, testing, and now trial-and-error treatment Meghan maintains daily and erratic bouts of retching, nausea, vomiting, constipation/diarrhea, severe stomach pain, tremors, sweats, chills, whole body aching, neck and head pain, dizziness (resulting in falling, and fainting), motion sickness, impaired vision, loss of concentration, diminished short-term memory, fatigue, pallor, and overall malaise. The inconsistency of the presence of these symptoms makes it unpredictable as to when Meghan will feel somewhat well or unwell, though 90% of the time it is the latter. Thus planning or engaging in any activity for more than a few hours became impossible to plan for. At times Meghan is able to engage in some activities of daily living during indefinite and very infrequent hiatuses of her varying symptoms, though it seems the adrenaline she uses to get through a time of activity is always followed by days of virtual incapacity where she literally is in bed in excess of 16–18 hours per day. Often times I have had to help Meghan shower, get dressed, walk up stairs, make her meals, etc. To this day Meghan still needs assistance with normal activities of daily living depending on what symptoms she is having.

Having lost her independence and the control over her own body after taking superlative care of it preceding her current health condition left all of us so very sad. My husband and I realized that the daughter who left for Malawi was not the daughter who returned home. Meghan’s body is continually at war with itself and she is the casualty of it. There has not been a single day since the onset of her illness in April 2008 when she has not suffered from at least two or more of the symptoms of Autonomic Dysautonomia for at least half the day if not more.

Meghan viewed the Peace Corps as her employer, and respected it as such and carried out her duties to the best of her ability. It seems, however, when it was discovered that she could no longer be of use she was ousted with compromised health and returned home unemployed, indignant, and with referrals to be examined but not treated. Meghan has continually struggled with the three-tiered medical insurance system Peace Corps has: PC-121 for pre-approved Peace Corps evaluation with an expiration date of 6 months after close of service, Corps Care (insurance she pays a $158 premium for monthly) to be used for only non-Peace Corps related medical issues, and FECA (Federal Employee’s Compensation Act) that will cover Peace Corps related medical problems’ treatment, but only after a definitive diagnosis is established and 90 days of review has passed. Each phone call placed to the Peace Corps was only answered half the time, making it extremely difficult to get proper authorization for doctors appointments, medical tests, and lab work. This is not to mention the added headache from dealing with the absolute rudeness and extreme nastiness of the federal government workers assigned to help Peace Corp workers navigate a broken system.

For weeks after Meghan arrived home she went without any medication because she had no way of paying out of pocket for prescriptions that cost over $400 each, which purportedly she was not allowed to use her Corps Care insurance for coverage as all medications were related to her service, and Corps Care covers only non-Peace Corps related medical expenses. After speaking to another individual at Peace Corps she was told she may use her Corps Care insurance as a bridge until her FECA claim was processed. The co-pay was still $20–$40 per prescription, and she was on at any given time eleven to fourteen different medications per day.

All emergency visits and her admittance to the hospital were not covered by Peace Corps as they are categorized under “treatment,” so have yet to be paid as she does not have the capital for thousands of dollars in medical bills while she is paying for student loans, prescriptions, and medical insurance with no income as an invalid.

Meghan is sincerely grateful for all she has in her life, but she struggles every single day to maintain hope that maybe, just maybe she will be able to contribute to society as she has always dreamed. She joined the Peace Corps leaving behind family, a secure job, and a life in the First World for the opportunity to fulfill her dream of making a difference in the lives of people who need it the most. She still to this day has that dream, and she was grateful to the Peace Corps for giving her the short opportunity to do the work she accomplished while in Malawi, but as her mother, I do not believe she would have accepted the invitation to join the Peace Corps knowing that giving a year of life to volunteerism would impair her physically for the rest of her life and most importantly of all, that she would not be granted support from the organization she served on behalf of the United States of America.

Meghan was hoping beyond hope that her condition would stabilize and improve so that she could go on with her education in Human Rights to more fully serve her community, her country, and the world. But when Meghan passed the two year mark of hoping for improvement in her condition, the improvement never occurred. Dr. Barboi, her neurologist, then sat down with Meghan, her father and myself and informed us that the reality was that Meghan’s condition had not improved to the point it should have if she were going to make a more complete recovery. She has been told that pregnancy could be risky as it could further negatively affect her dysautonomia and therefore it is not advised. She also has been told that she cannot travel to impoverished places outside of the United States because she needs to be close to medical care, and that because the symptoms of her disorder are so pronounced she, in all likelihood will never be able to work. Her dreams and her life have been shattered.

Meghan receives Workman’s Compensation which puts her just barely above poverty level and thus makes her ineligible for any low income assistance. She has used her Workman’s Compensation stipend to pay off her student loans.

It will be eight years this June since Meghan returned home. Her condition has not improved. She is disabled. We as her parents are now struggling to plan for her financial future hoping that we will be able to safeguard her financial future after we are gone. Her father continues to struggle daily with what has happened to Meghan and the lack of support from the Peace Corps.

We encourage Meghan to have continued hope, to try and re-purpose her dreams, and then in the quiet of the night I weep for the daughter who lost her dreams.

Thank you for taking the time to read Meghan’s story,

Cynthia Wolf

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Places Remembered

What was it about the Peace Corps? About Ethiopia,
That has meant so much in our lives? 
The answer is, I believe, that once a long time ago,
when we were young and believed we could make a difference, 
we flew to the Horn of Africa and touched this world firsthand,
touched it where it burns,
and we have never healed.

John Coyne (Ethiopia 1962-64)