‘Life According to Sam’

Yesterday night I watched a documentary with my mother, it was called ‘Life According to Sam’ and showed the life of Sam Berns, a kid suffering from progeria, and his parents, two pediatricians, one of whom started a clinical study for a drug that may help sufferers from progeria.

We were mesmerized. That kid, that fifteen year old kid, suffering from a rare and fatal genetic disorder (most don’t live beyond their thirteenth year), was so well adjusted, so happy, so clever. It was truly an inspiration, and made me feel both inspired to live life to the fullest, and ashamed, of my own little problems, that grow ever more minuscule in the face of what he had to go through. I was also very inspired by his parents, who, despite the difficulties, remained happy, good and optimistic, and raised such a wonderful child, giving him a truly happy life, albeit a short one. I must confess that when the movie just started I pitied them, and I pitied him, I thought it must be horrible, to be in this situation. But when I saw their wonderful family dynamics, and all the love that was shared between them, I realized this isn’t the case. Once he opened his mouth and spoke in front of the camera, he was so intelligent, so articulate, and so happy and hopeful. I understood that I figured it all wrong: that family was not miserable, for “having” to raise a disordered child, they were privileged to have known him, and to have felt and shared all that love and joy. 

There are a lot of lessons to be learned here, for me. Not to be so quick to judge, and not to be so judgmental in general; that what defines us are not the obstacles we face, but the way we handle them, and people who face adversities without succumbing to anger and pity, but instead use joy, love and laughter, have my utter and total respect; that a short life is not necessarily a wasted one, and this was important for me, as I am very anxious about growing older, and about death in general, we just need to find the happiness in our life, and strive to treasure every moment. Even when we get busy and focused, we should take some time each day to put things in perspective; and finally, that family is the most important thing we have, and we should not take that for granted.

After watching the film I googled Sam Berns, and discovered that he has passed away exactly a month ago, January 10th, 2014. It broke my heart. I knew he couldn’t have lived for much longer, but the film ended with him as a 17 year old, a brilliant student, dreaming of going to MIT. How I wish he could have fulfilled his dream. But I find comfort in the fact that despite all that, he had a very happy life.

I highly recommend watching this documentary, and here is a link to a short article about Sam, and how he became the “face of the disease” and made this rare condition (affecting only around two hundred and fifty children worldwide) more well known.

 

Leore Joanne.

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It takes myriad stories, to truly know another culture

I have just watched this video, as part of a Ted‐talk‐binge, and it moved me. Chimamanda Ngozi Adichie, whose books I have not read yet, but am definitely going to now, is saying that we tend to misunderstand other people and cultures when we are offered only one view of them. She gives various examples, some of them funny and some touching, and I felt that I could both relate to her feeling of her identity being flattened out, and feel guilty of doing the same.

As an Israeli woman, I have, from time to time, come across people who view Israel only as a place of war, which is basically very untrue. Yes, there have been a lot of wars here, yes, the area is troubled, yes ‐ people I have known died, and I spent a couple of weeks in a shelter at one point. But mostly, our lives aren’t any different from the lives of any other person in the western world.

But this video touched me even more when I think of my trip to Kenya a couple of months ago. It was amazing, but at the same time I felt very uneasy a lot of the time. I didn’t always know how to take everything in, and I am sure that I have been guilty of seeing only one story, which is very easy when you visit a country focusing only on one aspect of it ‐ the wildlife, it makes the whole variety of human life in that country take a back sit. So I have only seen the people on the sides of the road as we were traveling from one game park to another, the hotel workers in the lodges, and our guide.
Thinking back though, I did TRY to get a wider perspective, I was feeling curious about the people of this country, whom I could only glimpse briefly through the car windows. I did so by getting friendlier with our guide, and asking him questions about his life, and family, his career path, and about life in Kenya in general. There was also one memorable evening, when I was still in the lodge when a guy came in for turn‐down service. I don’t know how, but we just started talking. He was around my age, in his twenties, and came from a tribal village. We talked for an hour, this was my first experience actually TALKING to a Kenyan, not just watching the display the villages put up for tourists (which I hated, because it made me feel so uncomfortable, and fake, and patronizing). He told me about his village, and how his family reacted when he left to work at a hotel, and how the language system works in a country that has a gazillion of them. The naming system, coming of age ceremonies and going to school. We covered a lot in that hour, and I think it belongs in the list of the most special things I have experienced in Kenya, together with our car being charged by a rhino, and a monkey stealing cookies out of my tray on the porch at six o’clock in the morning.
I think it was very important to me to get another view of life in Kenya, not just the game drives, the other tourists, and the people gardening on the sides of the roads. It is still not enough to get a real, rounded picture of Kenya, and is not even close to enough to getting a picture of the whole of Africa, which is why I brought back a few books that have Africa, or certain countries in Africa, as their main theme. It is something that I would like to educate myself more about, because I think that we (non‐Africaners) have no idea how diverse Africa is, and I would like to be less ignorant.