Samantha Myers

Hanukkah

What I love about Hanukkah is seeing everyone and getting presents. I got my Mom a wine jug. She told me what she wanted so that was easy! I have not a clue about what presents I will get. But, people know what I want because I tell them!

What I really want is a laptop. That's on my wish list. A Mac. I have never had a laptop. If I had a laptop I could take notes in class more easily. Now, I write them, but it is hard for me to write so fast. I learning how to be faster on the computer.

I would also like a new watch, a Casio film watch. Alla has one. It's a waterproof watch. You can wear it when you take a shower. You can find them on eBay.

I would like the movie Just Like Heaven. It's about a woman who is a doctor. She gets into an accident. She is in a coma. This guy rents her apartment and her spirit comes back and tortures him. She goes wherever he goes. He's the only one who can see her and talk to her and hear her. Nobody else can.

Hair

Rachel and I went to the Skirball Center to see Hair. My Dad said he thought it would be interesting, funny, cute. It was the total opposite! The had a lot of really bad words, including the F-word. I didn't really understand it.

Fred: It was a bit inappropriate.

Sam: A bit? A bit? It was VERY inappropriate.

Fred: I got a phone call from Rachel. "Do we really have to stay and watch this?"

Sam: I thought it was going to get better but it didn't. We left in the middle.

Keshi's birthday

I mentioned in my last posting that I am going to Keshi's birthday party on Sunday. Alla and I are going to go shopping tomorrow. About gifts she would like? Something to do with knitting or horses or something that has to do with acting.

I went to Amanda's Sweet Sixteen party. It was in Brooklyn in Dumbo and she had a lot of people over. It started at 7:00 and didn't end till 11:00 pm. A lot of dancing. The place sort of reminded me of the Torch Club. More like the restaurant called Mars, where I had my 17th birthday party. I picked that place for my party because I had not been there a long time and I love the food and the Aliens are reall fun. The chocolate cake is really amazing! Sonja, Amanda, Keshi, Perry, Jamie, Lauren, Elie, my aunt, my parents, Jamie's parents, Soraya. Altogether there were about 18 people. What I liked most was having my friends there.

My next birthday? My favorite restaurant is Ennio and Michael's but that is a little too fancy for my friends. Maybe Mars again. No, not Mars.

Fred: We have to find new place.

Sam: We'll do it out because we don't have much room here. We'll invite the same people. Lauren is in college, so I don't know.

This weekend

Tomorow Alla will come over and we'll hang out. Then, on Sunday, I am going to my friend's birthday party in Brooklyn, my friend Keshi. She has FD too. I know her from camp. She's really nice and she loves horses. We just have a lot of fun together. She goes to my school so I see her a lot. She's come to my house to visit me. A couple of my friends from school will be at the party. There will be cake, ice cream, She can eat ice cream.

BKG: She can eat ice cream?

Sam: Yes. there is a swallow study test and what they do is that they give you a little cup of juice or milk and you drink it to see if you can have it or not. I think I tried it twice and it didn't work. Neither of them worked. That's why I can't drink milk or juice. Keshi passed the test and she can have pretty much everything that I can't. My friends Perry and Jamie are not allowed to drink anything because it can go into their lungs and make them really sick. My friend Jamie is missing a lung because she was diagnosed very late. She can breathe, but she wears oxygen every night like I do. I hate it but I have to wear it.

Perry also goes to my school and she has to have eye drop every fifteen minutes. She cannot produce tears. Jamie also has to have eye drops but not as much as Perry. Both are on oxygen.

They are very nice. They are very funny, very cheerful, and we just have a lot of fun together, all three of us. We three are the only ones in our school with FD. Keshi loves acting. She also LOVES to knit. She knits all kinds of stuff. Jamie loves cats. She has one cat.

Picnic at the park

We went on a picnic yesterday with Alla and Lily. We went to Rockefeller Park north of Battery Park. I had never been there before. It was near the water. The park was so beautiful.  I could see all these amazing buildings. I took a lot of pictures of everything: trees, people, buildings, and all kinds of stuff.There were so many people there. They were tanning.  I had a peanut butter and jelly sandwich. Alla had a banana and Lily had an apple.We walked there with my wheelchair, and we took a taxi home because it was so hot.

Marina's dorm

I went to see Marina's dorm today. She invited me over to see her dorm. I met her roommate Liana. Liana is very nice. Funny thing: her grandma is best friends with my grandpa, my Mom's Dad.

Their room is really cool. Marina cleaned it up and it looked really nice. They have fabric all over the place, nice colors. They  have about three closets, a bathroom, and a kitchen, not a big one. No stuffed animals, but they had pictures of them with their friends on their desks. We talked about all kinds of stuff, nothing in particular, just stuff.

Marina gave me this really nice scarf for my birthday. It's grey with little pink things in it.

I showed Marina my blog. She loved it. She wrote down the URL so she could look at it and make comments.

I don't know what they are studying. It was just nice to see them.

Natan interviews Samantha

3/13/03. Samantha Myers is a fourteen year old girl. She lives with her parents and her dog, Smokey. She has a rare Jewish genetic disorder called Familial Disautonomia. It affects the motor system and she has trouble swallowing. She has a button in her stomach; she gets fluids in this manner. A syringe is put into the top of the button and the plunger pushes the fluid into her stomach. She has gone on national television and explained what F.D. is. She also raises money for the F.D. foundation, to find a cure. I am Samantha's friend and I interviewed her when she was 14 and I was 13 years old, in 2003.

My blog

This blog is a suprise gift for my 17th birthday from my godmother and our friend Dave, who is a whiz. He has an interesting blog called The Daily Glyph and is crazy about Google Earth.