When Muttesi hugs me, her head reaches my chest, and I am not a tall person. She is a mother of a vibrant seven year old girl and they live next to our group’s guesthouse with their extended family. Muttesi appreciates the work we are doing in the region and even more, the joy we bring to her daughter whenever we play. Even though she cannot speak English, she always expresses her motherly appreciation, especially by giving hugs. One day, after she gave me a hug, the frail, tiny frame of her body became particularly evident. After releasing, a confused look overcame her eyes. She backed up several steps, staggered to her house and in her front lawn, she fell to the ground and began convulsing next to a family of chickens walking about.
Immediately, neighbors, friends, family members and I came to help. She was shaking and foaming from the mouth, but everyone seemed to stay calm, disturbingly calm. My Rwandese friend told me that this was a common occurrence in the country. He claimed that the genocide left many psychologically traumatized and they somehow relive their experiences in moments like these. However, it did not appear that this was a case of Post-traumatic Stress Disorder. So I asked family members several questions about these incidents and I learned that she lived in Uganda during the genocide and that she really never experienced a traumatic event. After Muttesi stopped seizing, I asked another of my Rwandese friends to translate for me and I asked her, “Do you have feelings that you will ‘fall down and shake’ before it happens, such as a premonition?” Her affirmative answer confirmed my suspicions of epilepsy.
She never received treatment her for her chronic illness of twelve years and I soon discovered the reason. Talking to several Rwandese men, they stubbornly insisted that there was no treatment for epilepsy in the country. “It is quite a common occurrence” a man driving a jeep stated, “people fall down and you see it and there is no medicine for it. There is no reason that she should go to the hospital.” Despite this man’s assertion, I was not satisfied. I could not live with myself knowing that I had at least tried to help out. I felt compelled to at least see that if there is no medicine in Gisenyi, then maybe that capital city of Kigali would have some form of treatment. So I marched down the road to the Hospital de Gisenyi ten minutes away. I was able to speak with a pharmacist and I simply asked if they treated epilepsy in Rwanda. His answer astonished me. “Of course we have medication for that. We have Depakote, Carbamazepine, Phenylbarbital, Clonazepam, Diazepam. They are right here on the shelf. Some I do not even need a prescription.”
I rushed back to Muttessi and informed everyone that indeed there was a treatment for her problem in the city and she agreed to go to the hospital after regaining the strength to walk, on the condition that I accompany her. Early the next morning, before the group’s departure to the village, I walked with Muttessi first to the crowded corridors of the clinic. There we met with a nurse and she wrote us a referral to see a doctor in the hospital. We left the clinic and walked to the hospital that was organized like a campus, with the waiting rooms outside and separate buildings for different wards. Both visits each required a thirty cent “co-pay” thanks to her solidarity card (insurance card that costs $2 a year).
In the hospital, the extent of her illness devastated me. She looked to be in her late 30’s, but according to the birth date on her card, she was really 22 years old… younger than I! When she stepped on the hospital scale, the arrow tipped to 27 kilograms… 60 pounds! Evidently, her seizures came several times a week, making her too ill to feed herself. She was wasting away and I worried her beautiful daughter followed in this line of neglect.
There were forty people lined up to see the doctor. I sat with Muttessi as long as I possibly could, but since I needed to catch the Red Cross vehicle to the village at 9am, I had to leave before she was seen. After spending a day in the village, where I was noticeably distracted from the group’s work, I returned to the guesthouse and saw Muttessi, limping down the dirt road. She had been in the hospital all day. When I met her, she showed me a prescription for Depakote. It cost 80 cents. In the US, this medication costs about $150 a month. I felt a sense of justice in pharmaceutical companies allowing the production of cheap generic drugs, but when she complained that the price was still too much, all notions of justice withered away. How can she afford 80 cents a month if she has no income? I could easily give her several dollars to cover the medication prescription for the year, but I refrained. This would violate the group’s value of sustainability. Yet, I felt criminal withholding money.
The Rwandese do not uphold the ideal of self-reliance like Americans do. Instead, family and social support networks play a much greater role in the care for individuals. I witnessed this phenomenon first hand when I gathered her family together. With the help of a translator, I described the pathophysiology of epilepsy as best I could. I told them that the medicine would not cure Muttessi’s epilepsy, but it would at least help, and allow her to eat, gain weight and maybe even work. I insisted that everyone in the family help to continually pay for her medicine and to monitor if she improves. Everyone agreed and promised to ensure that she receive the attention her condition deserved. I finally felt comfortable that I did everything I could possibly do for this wonderful mother. This is what it must feel like to be a doctor.