Its been said I am optimist. Its also been noted I lack certain social norms...or rather choose to ignore them. You could blame my hearing loss but I think its mostly my cultural upbringing.
Although I grew up American, I think I really grew up as a gimp and disability has a cultural education all its own. For one thing pretty much no matter where you are born, you start out at the bottom of the totem pole of society. We are the beggars on the streets, the man selling pencils on the corner, the hunchbacks in the bell towers and the people that sometimes make you squirm because of our struggle to talk/walk/etc. The thing though that I have come to a greater personal awareness in the few years is that while the people at the top of totem pole (ironically including my peers, young professionals) look at me as different, scary, pitiful, the others who might be different/scary/pitful for many other reasons see me as a person who they can relate to (never mind my excessively expensive education, my car, my ethnicity or my profession). I.e. every janitor, every cafeteria worker including the ones who spoke primarily Spanish knew me by name at Wake in undergrad and half the janitors at Childrens know me. All the project search (young adults with developmental disabilities) employees know me by name and we have had a meal together. I have friends in Eastern Europe who happen to be Roma beggars who most of my peers are terrified of being mugged by. I have drunk champagne with a refugee family in Belarus who might have terrorist connections but had a daughter with a cerebral palsy who I adored and faithfully visited weekly for two months.. When my family went on a cruise I befriended the lady who cleaned our rooms, she was from Costa Rica. My family thinks I am nuts but mostly tolerates it because they know its hopeless to reform me normalcy at this point. I give this background to say that I have grown up in a world where the social axis is turned on its head. And sometimes I forget that the rest of the planet does not think like this. That the rest of the world system of value of human beings is pretty much the opposite of the way my tribe thinks.
Combine this with optimism and you get a lot crazy schemes and ideas.....
14 day old with VSD/ASD and pulmonic stensois, otherwise perfect. I have been praying for babies on ECMO (see below) and I just can't live with leaving this baby here to wait the 2.5-3 yr wait and present like my other patients in failure with cardiac asthma gasping for air with deadly pulmonary hypertension. I realize this is a needle in a giant haystack of stories and injustice. But I feel like this is achievable somehow...So I write some e-mails, I sell my case, this child has a repairable heart defect, this child has a beautiful family who love him...... And low and behold, somebody catches the vision and tells me there is a CT surgeon team coming to another hospital in Kenya in 6 months. 6-9 months is EXACTLY when the surgery should be done. The cardiologist takes my history, my echo and is optimistic that if we can keep his weight up, my baby is a great candidate for surgery. Every once in a while, miracles happen and for a moment our world shifts and babies with heart defects in East Africa get a chance.
Then there is my friend Miriam, she has some kind of dwarfism variant (I debate every time I see her....its an Acondroplasia like dysmorophology but worsening hip and hand disease...which does not fit). She was an orphan raised by her grandfather, who dropped out of school in 8th Grade to support her grandfather. She is now a single parent with a 9 yo also with the same disease who is wickedly brilliant (scored 585/600 on his national exam) and tells you in beautiful English that he wants to be a engineer when he grows up and figured out how to make games work on my computer in about 30 seconds. She has severe hip dysplasia, with bone on bone disease. Her hands have worsened. She used to operate a knitting machine but her hands have gotten too bad. She now sells what she can buy cheap in Nairobi textiles wise in the market here in Kijabe on the days her pain is not so bad and she can make it the 3 miles down the mountain. The locals tell me its getting worse. The peds ortho here says there is nothing to be done. I know how difficult and precarious adult skeletal dysplasia surgeries (ha!) are especially little people joint replacements. But of course this cuts me to my core because I have been exactly where she is (minus that I was not a single parent with an 8th grade education). There is very little I can do about this. But I have tried anyway, I have sent emails and am begging and persuading. And trying to think of micro finance endeavors. I have been unsuccessful.
So I did something that made my neighbors stare a bit. I invited her to dinner. I had no idea if she would say yes but she did. She showed up with Joel her son in their Sunday best. I made rice, Kenyan stew, potatoes and ice cream and chai for dessert. I showed them pictures of LPs from around the world that I collected on my computer. I listened to their stories and I found something remarkable. Miriam grew up in my tribe too and has the same ridiculous optimism. She asked me why shouldn't there be a Little People Group in Kenya like there is in America and Uganda and South Africa and England.... She said she wanted to start one for Joel. She also said, they could have a project that provided employment for people who would otherwise not have it. I sat there again and was amazed. Most people would not see her as an activist, most people wouldn't think much other than either hopelessness or sadness. About half way through dinner, I got a knock at the door. There was the very persistent woman who has been coming around to the Westerners begging for money. She saw that Miriam and Joel were there eating at my table. She looked stunned, she spoke to Miriam in Swahili, gaped at me open mouthed and then back at Miriam. She apologized in Swahili and English for interrupting our supper and left without every asking me for a dime.
And I realized that as inadequate as serving dinner seemed in the light of the bigger problems, I realized all over again as my tribe as taught me so well that just acknowledging the dignity and the worth of our fellow human beings is a far greater endeavor than all the medical endeavors and crazy development schemes.
Dignity and worth are a different kind of healing, a divine sort.
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