Musings of a Marfan Mom

Review: In My Hands

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I wasn’t sure how I would like In My Hands. The segments I posted earlier looked promising, but I’d seen the rough cut of the documentary at the Boston NMF conference and hated it. I felt like the movie had no direction and was too negative, and I walked out of the viewing halfway through.

I am extremely pleased with the final version. It is the exact opposite of what I saw in the rough cut: cohesive and uplifting.

There are a couple nitpicky issues I have though. First, the word “disease” is used frequently throughout the documentary, but Marfan is not a disease: it’s a disorder, a syndrome. I realize disorder and disease tend to be used interchangeably, but there is a slight difference and I’m rather pedantic on this issue.

Also, I felt like a lot of emphasis was put on the aortic root and monitoring that, but not much on the rest of the aorta. I don’t think Ben’s cardiologist even mentioned the rest of the aorta. Although aneurysms tend to develop in the root first, they can actually happen anywhere in the aorta at any time. It’s vital that people with Marfan have yearly echoes of the ENTIRE aorta.

So other than those small things, I loved this documentary!

If you have Marfan syndrome, if someone you love has Marfan syndrome, or if you are curious about Marfan syndrome and want to learn more, WATCH THIS! In My Hands is able to address all three groups in a way that doesn’t interrupt the flow of the various storylines.

The curious: Dr. Hal Dietz of Johns Hopkins is once again a superstar as he explains the syndrome in easy-to-understand terminology. Various, one-sentence facts also play across the screen before relevant sections. The infusion of Katie, Kami, John, Chris, and Ben’s stories bring an understanding of Marfan that no article on marfan.org ever could.

The loved ones: This film will speak to “non-Marf” parents in particular. Ben’s parents and Katie and Kami’s mom don’t shy away from discussing some of the familial strains that come with having differently-abled children. I love the mother who talked about her initial fears of letting her son out of her sight, but that now she can say “go on, get outta here!” I know (at least on one level) how scary the diagnosis is, but there is so much that we, Marfs, can do. Parents: this documentary will show kids living WELL with Marfan. It will show them dancing, doing martial arts, swimming, climbing a ropes course, playing music, and more. There’s nothing more hopeful and beautiful than that.

The Marfs: So many times while watching this I would think “Exactly! They hit the nail on the head!” John described my thoughts on having a “Marf baby” perfectly. I could empathize with Katie and Kami because I was their age not so long ago and had the same feelings about myself. It can be easy to feel alone with this disorder, but this movie will remind you that you are not alone.

I advise screening this video as a family before showing it to friends and extended family members. Marfan is a life-threatening disorder, so the documentary is not all rainbows and sunshine, although it is ultimately extremely uplifting. I believe having a run through will help you anticipate questions that might come up, or “talking points” to discuss further with your audience.

In My Hands is masterful. It is moving. It may change you; I hope that it does. Bring tissues…lots of them. The last segment is breathtaking, and be sure to watch all the credits.

* Copies are available in limited supply through the National Marfan Foundation for eligible families. The order form can be found here and the cost is $25. If you have questions about your eligibility after reading the form, you can contact Jonathan Martin at jmartin@marfan.org.

** I was not paid for this review, nor was I asked to do this review by the NMF. I paid for my copy of the documentary myself.

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4 Comments

  1. As always beautiful to read. I can hardly wait to see the video! Just like you it makes me crazy when they call a syndrome a disease – any syndrome (makes Lee even more nuts then it does me and no one likes it when a teenager gets any nuttier LoL)
    Hugs

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  2. Oh Maya, I’m glad you finally got to see it, and very happy that you liked it :) your review shall one day make me famous.

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  3. Hey there, stopping by from SITS! Great information you have here!

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  4. This sounds like a great film!

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