Saturday, January 16, 2010

A break from the regularly scheduled autism related blogging...

Today I attended the celebration of the life of Jana Sheets, who passed away January 6th, at the age of 35. Jana was the daughter of my mother's very close friend Sue, and was about the happiest person I ever knew. I didn't know her closely, but she has been in my life off and on for the last 10-13 years and in the last couple of years we talked back and forth via Facebook. Jana took time out of her day to answer my questions, as much as she could, about Duke Hospital up in Durham, when Jaymes was referred there for a couple different things. She loved seeing photos of my kids, and especially liked Jaymes. She also made Sierra a really beautiful necklace a couple years ago. The last time I saw Jana was the Thanksgiving before last, and while she was on oxygen and pretty frail, she was as happy and smiling as she had ever been. Jana was one of the very few people I have met who I have never seen unhappy or grumpy. I honestly cannot say I have ever seen her without a smile on her face. You really can't say that about a lot of people.

Jana had a rare disease called Lymphangiomatosis, and (copied from the Ithaca Journal's obituary)was the founder of the Lymphangiomatosis & Gorham's Disease Alliance, a charity dedicated to patient support and organizing research interest, Jana was known throughout the worldwide patient and medical professionals communities concerned with these two catastrophic, mainly pediatric diseases. She had devoted the last 4 years of her life to the cause of patients and families affected with these rare, poorly understood, orphan-diseases. Jana was also a founding Board Member of the Lung Transplant Foundation, Durham, NC. (end quote)

The service today was very unique, and very well done. There was a beautiful slide show with photos of Jana, from the time she was a baby until very recently, and some very appropriate songs. Her mother did a wonderful little speech about Jana, and the kind of person she was. It was well written and well delivered, and I think Sue captured the essence of Jana perfectly.

Several other family members and friends also spoke, including Jana's sister, Megan. Her husband, Eric, read the eulogy, then the whole thing ended with another slide show of photos choreographed to music, and the entire group gave Jana, and the way Jana lived her life, a standing ovation. I think she would have liked how things went, it was really very nice.

I think the thing I enjoyed the most was hearing about the way Jana looked at the world, and how she met life head on rather than letting circumstances get the better of her. The fact that she began to advocate for herself as a kid really impressed me, and hearing the specific little anecdontes from people who knew her so well was inspiring. She was an incredible advocate for herself and others, and she lived her life with a bright smile and an upbeat spirit.

I think you all know how much respect I have for anyone who is able to advocate so effectively, a skill that I have been very slow to learn, but that I try to use daily in my interactions with Jaymes' doctors, therapists, and school. Jana inspired everyone around her to be a better person, and to spend more time smiling, and less time carrying around anger and bitterness. With the things she went through, she had every right to have been angry and unhappy, but she was better than that, and she chose to live her life, and not let herself be mired down by self pity.

I wish that I had taken the opportunities I had to have been closer with her. I feel privileged to have known her, though, and enjoyed every interaction we had over the years, as few as those were.

My strongest memory of her was back when we lived in New York. Jana and I were sitting on the front porch, and she told me a story about a nickname someone in the family (Sue, I think) had given her, jokingly. She told me because she wanted to make me laugh, and it did. I also felt really honored, as a kid, to be let in on what seemed like a big secret. It was really just a silly play on her name with a couple extra syllables added in to make it kind of an embarrassing nickname, but she told me never to say it in front of anybody but her and trusted me with that secret. That's a big deal to an 11-12 year old. I never did tell anyone, and I won't post it here for obvious reasons. Not sure why that's the strongest memory I've got, but go figure. Her sense of humor was wonderful, and she could even laugh at her embarrassing nickname. That was just the kind of person she was.

I'm glad that I was invited to be there, to celebrate the way Jana lived her life, and to hear the stories and poems read by the people who loved her the most. I hope that her family, particularly her mother, can be strong and look back on memories of Jana with joy, instead of with grief.

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