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Wednesday, June 23, 2010

Father's Day

It's been a tough few weeks for Matt.

Leading up to the "This American Life" episode, Matt and I were doing a lot of talking about his narcolepsy: the frustrating and scary search for correct diagnosis and treatment, how it has affected our family, where we want to go with the book. The constant focus on this disease that has come to define so many aspects of our lives uncovered emotions that Matt usually tries to prevent himself from feeling.

For Matt, strong emotions lead to intense attacks of cataplexy. These attacks make Matt feel quite ill -- and more tired than usual. Which is saying something for a narcoleptic.

So, going into Father's Day was tough. And Father's Day is difficult even during the best of times.

The kids have learned to weigh the potential effects of their actions on Matt's health. This year they each chose slightly different ways of reaching out to wish him a happy Father's Day. Amanda purchased a card but held on to it, planning to give it to him when we visit next week. Joseph called. And Ben (who is local) dropped by for dinner and brought a funny card.

I lost count of how many attacks of cataplexy Matt had on Sunday, but in addition to the several he had simply because he was already having a tough week, the card from me and each contact with one of the kids triggered another.

At the close of the day, Matt confessed to me that he is no longer certain that he we will be able to tolerate the stress of the trip to California we have planned to take this weekend.

I'm really struggling with this. In the four years since he started having attacks of cataplexy, we've been trying to land on some sort of compromise regarding how involved he will be in the lives of our family, most of whom are in California.

How do we make such a decision? How do we weigh the cost that each relationship takes on Matt's health against the benefits of loving and being loved by another human being? Of being part of a family?

There are no easy answers here. I suspect that we will revisit the challenge of finding a compromise that we can both live with periodically for the rest of our lives.

But today isn't the rest of our lives. Today is two days before we had planned to leave on a trip I have been looking forward to for some time. Three days before we were to share in Riley's first ballet recital and to cheer Isabelle on at one of her first soccer games.

Deep breath: I love Matt and he loves me. We will continue to seek, sometimes blindly, compromises we can both live with. We will repeatedly be forced to confront the question: how much "relationship" is enough to meet our needs without taking too much of a toll on Matt's health.

I am thankful that we are both fiercely determined to keep this marriage working.

There will be more recitals and soccer games. But this has been a tough week.


  1. What a generous account of your life with narcolepsy and how it affects the whole family. That you balance the changes with what is special in your relationship, including what makes redefining emotional boundaries worthwhile, is incredibly special!

  2. Thank you for sharing your reflection on this post -- I really appreciate your kind words!

  3. Trish, I did not know that you are dealing with this in your family. I am not sure what narcolepsy is but I will look it up so I can understand your family situation.
    Keep writing Trish, and I will keep reading.
    My husband keeps a lot of his health issues in. I admire Matt for being open and sharing.
    Teresa Larsen

  4. I promise to put up some information on narcolepsy with cataplexy soon... I do want to share background that will make the disease more understandable to those who don't live with it!

  5. Thank you for sharing. My recent diagnoses of Narcolepsy has answered many questions. We found out due to cataplexy attacks. The more I learn the more amazed I am. I have had narcolepsy most of my life, always known as the clutz, lazy, to tired for anything. The reality was different unfortunately now at 38 I am understanding or trying to. I can relate to many things in your posts. I am raising my 6 children alone right now. On days when due to either narcolepsy or fibro I cant get up easily and the kids fight, well I am sure you can imagine the scene. Me trying to hurry to get up to help break up the fight, frustration building, I usually fall out of bed and not so gracefully.

  6. @ Lady Jae --
    Wow, I am so sorry that you have so little support. I raised four kids and found that overwhelming at times even though (1) I wasn't sick and (2) I have always been fortunate to have a lotof support from my family.
    I admire your courage in sharing your story, and your commitment to being the best mom you can to your kids. Perhaps a silver lining of sorts is that this experience may help them grow up to be super understanding, supportive adults to the others in their lives.
    I am sorry that you have been wrongly labeled as lazy, clutzy, etc. That is certainly one of the sad legacies of this disease -- most people just really do NOT understand it at all. Tell your family to watch the Nightline Prime episode on ABC this Thursay. Perhaps they will understand you better when they see that there are others in the boat and we are all bailing as fast as we can! Hugs!


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