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Saturday, August 7, 2010

Primetime TV -- ready for this?

What a month we've had! I spent a wonderful week with family at camp in the Santa Cruz mountains. I had oodles of fun with our daughters Bekah and Amanda and their families. I overcame my fear of heights long enough to complete part of a ropes course that spanned the redwoods 40 feet above the ground (patting myself on the back). Don't worry: I have the photos to prove it -- and in a couple of them I actually have my eyes open! ;o) 

I returned home to a frantic week of cleaning and preparing to host a camera crew from ABC's Nightline. A Nightline producer had contacted Matt a few weeks ago to see if we would be willing to share how this disorder has affected our lives together. So, we spent last Saturday-Monday being followed around and filmed by a very sweet ABC cameraman named Karson (Hi Karson!). It was, I admit, rather surreal to be doing those normal, every day sort of chores like cleaning up after the dog (here's a "woof" out to Brooklyn) or washing dishes and look up to see that camera recording every move. I think we managed to live about as normally as possible given the rather other-than-normal presence of that camera.

One really cool, fantastic, wonderful and unexpected benefit of agreeing to do this: Matt and I had to spend lots of time together, much of it reflecting on our relationship and on past times together.

It was hard on Matt. He had lots of attacks of cataplexy, and the cumulative effect of multiple attacks is feeling really, really lousy. I feel a bit guilty, but this past week was rather fabulous for me. It was like I had my Sweetie back, however briefly.

Most of the time went like this: we would do something together, talk briefly about how Matt felt as he focused on us, and then Matt would have an attack. I know it was pretty bad for Matt, but it was so very nice for me. For the first time in far too long, we were in a situation where provoking, experiencing, and reflecting on those things that led us to fall in love, that we struggle to hang on to, was not simply tolerated but actually encouraged. I have missed that part of our lives.

I think we have both come away from this "forced togetherness" with some thoughts to ponder. And it has led me to hope that we can bring a little bit more of that emotional bonding back into our daily lives. We need to talk this through, but I am hopeful.

More on that later, after I have ruminated on it for a bit. In the meantime, you can actually see a bit of this for yourselves as it airs on August 19. Here is the synopsis from ABC's website:

"Thursday, August 19: “Nightline” co-anchor Cynthia McFadden explores the brain in love. She follows a remarkable story of love lost and found again after a traumatic brain injury. McFadden also talks to a man who is literally paralyzed by love—a peculiar brain condition that causes his body to shut down when he experiences feelings of love for his wife."

Please let me know what you think, and we would both really appreciate it if you will share this with your friends and families. We are really trying to get information about this disease out there, especially for those who may be struggling with this themselves!



  1. I feel like a heel! I had no idea. It sounds as though things are going as well as can be expected and sometimes better (!). I wondered why I didn't really see you last week...can't let that crew film you at the computer for too long!! I so know that feeling! Thanks for the eye-opener and best wishes!

  2. Hi Trish,

    My name is Ramon Werbeach and I am a member of the Board of Trustees of Narcolepsy Network. We are a national organization composed of people with narcolepsy, their family and friends, medical sleep specialists and researchers.

    I ask your permission to post a brief article about your Niteline story on the home page of our website, I will, of course, post a link to this Blog.

    Please visit our website to become more familiar with Narcolepsy Network and our place in the narcolepsy community.

    If you are not currently a member, please consider joining us and participating in our annual conference being held the weekend of October 8-10 in Arlington, VA. At our conference you and your husband will get aquainted with a couple hundred friends you did not know you had.

    I look forward to hearing from you about permission to post an article as soon as possible.


  3. Hi I too am a member of the "N" club but have only mild cat. I will mark my calender and watch this for sure. I belong to the internet support group Daily Strength on the Narcolepsy page, if you haven't done so yet you and your husband should check it out. Also another fairly new site one of our members started is, also has a page on facebook.

  4. Thank you Cheri! I recently joined the Daily Strength support group --- I will check out the planet narcolepsy on FB too, thanks for the info! Matt kind of leaves it to me to read, distill and share stuff from the N sites... he has a pretty tough time with anything that evokes his emotional side. I'm not working right now (fingers crossed for something soon ;o) so I am happy to do the "socializing", etc. for both of us. Is your EDS managed well by your meds? How long have you had Narcolepsy? Do you get lots of support from your family? I hope you are doing super well! :o)


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