Muscular Dystropy Conference/Joytown

On Friday, I had the extraordinary opportunity to go to Joytown which is a boarding school for children with disabilities (everyone goes to boarding school here so this is NOT to be confused with the institutions in E. Europe).  I went with Mercy the pediatric chaplain, who is Kenyan and probably my favorite mentor here.  Her two daughters (in their 20s) and grandson (14 mons old) came as well.  We hired a car and drove from Kijabe to Thika, a town about 1.5 hours east.  We were to be part of a seminar (conference) for families with children at the school with muscular dystrophy which I find to be a subtlety ironic reoccurring theme in my life*. 

The drive reminded me of all the things I fell in love with about Kenya the first time: the people the red, rutted roads, the Ascasia trees, the flowers, the women in bright colored kangas, the colorful booths and shops stuffed in every little village no matter how small or how run-down, the women with their wares spread out over a kanga on the side of the road, the mist burning off the mountains so similar to my own beloved mts at home, the men with bicycles piled high with heavy loads, the motorcycles with four people on somehow (the ED doc in me shudders a bit),  the children in their bright school uniforms waving and yes even the crazy mario-kart esque driving.  Mercy says that I am not very American.  She and her family call me “Wageri” (I think that is how it is spelled) which means (or so they tell me) “Mother of a Clan”:  Implying that I am really apparently a Kenyan who will start a new clan.  I took this as a compliment. 

The school was set up with dorms, several class room buildings, a small performance hall/chapel, a dining hall/kitchen, a gym for sport and therapy and a swimming pool (for hydrotherapy)!  It was FAIRLY accessible by wheelchair. The rutted, rocky roads were not great although my Kenyan students put me to shame doing wheelies over the whole thing.  Most of the children are on Easter holiday (the whole month of April) but some where there to be part of a camp to start next week, to go on a field trip to play wheelchair volleyball on the coast or for the conference we were speaking at. 

We were greeted and pulled quickly into the performance hall where the parents and students were already waiting. After an elaborate set of introductions and greetings, Mercy spoke to the families. We then had a chai (tea) break. I of course had not been part of the program but was quickly told/asked/expected to talk.  Since my Swahili is currently at the level of an 18 mo, I had an interrupter. His name was Kelvin, he is an occupational therapist and a bit of a clown, he teased me about being a fast talking American. He was wearing an OBAMA 2008 shirt and told me proudly he was Luo (the tribe of Obama’s Dad).  I told him Obama talked fast too, he laughed. We were fast friends. I told them about my life growing up with Kniest, the surgeries, various spiritual and life milestones. The parents had lots of questions.  A few were medical (an ortho (in fact the same ortho who looked at my knee) had been there the day before), a few were about how my family thought me but what we spent 40 mins talking about was  if I thought I was cursed or not.  Thank God, Thank God I was a religion major and did my honors work on that very issue because medical school totally did not prepare me this vital, question that ALWAYS comes up in global child health even if I never mention my own life experiences. This was the first time though I ever been asked that question bluntly in a public forum as a doctor (seen as a figure of great authority in the culture I am in).

The families were really receptive and I was really touched by how quickly they accepted me as one of their own.  It will never cease to amaze me how quickly being disabled can transcend all cultural boundaries.  Even though I have chosen NOT to do PMR or developmental peds (because the actual medicine bores me), I know this will continue to be part of what I do when I grow up and become a Peds EM/Global Health Doc/Nomad for Jesus/Mother of a Clan.

We had lunch. I got to know some of the kids which was awesome. They were articulate and fun. I also got to know a young Kenyan woman who was 8 mons pregnant with CP and several of the PTs/OTs. In the afternoon, Mercy insisted I go with her to counsel the mothers who wished to speak to her. Most of it was in Swahili which means I understood a lot of pronouns, numbers, colors and yes/no. Mercy took notes though and would show me them. Several of them brought concerns you would expect either they had been left by their spouses because of their sick child or had great financial hardship because of their sick child.  Several though came in strictly to ask about circumcision which I thought was really interesting. It is a typically a rite of passage when boys reach manhood. Some Kenyans will do it in the hospital these days.  The moms wanted me to tell them if I thought letting their son get circumcised would affect their MD.   I initially was somewhat flustered by this. I finally went strictly medical which was they could bring their child to the hospital have them looked at by our anesthesiologist and if they thought their lungs and heart were ok, we could probably do it.  (which seemed the culturally correct response despite my reservations for the poor teenage boys). We prayed with them (especially the ones with non-circumcision complaints) and referred several to a child sponsorship program who can help with medical financial woes. Meanwhile, one student and two Moms became Christians because of the conference (Kenya is a very religious country and having a revival and a support group meeting at the same time may seem odd to my American colleagues but is quite acceptable here. In fact there is very little separation between medicine and the spiritual aspect of people lives here people think of them as being connected…which I think has pros/cons and is a topic I can expand on a while later).  

I loved it. It was an amazing day. I was completely exhausted by the time we left. We stopped at a big supermarket in Thika and stocked up on CHEESE (!!!), laundry detergent, mangoes (always need more) and various other sundry items. I came home and slept for 11 hours.  

*For those of you who have not been following my global health adventures from the beginning…way back in 2004 I went to Bucharest, Romania for the first time. My mentor that summer was a young woman named Laura who was 28 and had a form of muscular dystrophy.  She was a brilliant, writer, activist for our tribe (disabled people).  She passed away Sept 23, 2004  about two months after I left Romania.  It was very hard on me and I struggled with the meaning of her death for a long time.  I had a little bit of a relapse when the first pediatric patient who ever died on my watch was a 18 yo with MD during my AI as a 4^th year medical student.