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Thursday, June 17, 2010

On hugs and other dangerous activities...

I really love a good hug.

No, I'm not promiscuous with my hugs; I tend to save them for those whom I care about. Of course there have been exceptions: times when I really needed a hug. Needy enough to hug Rush Limbaugh or John Boehner -- that desperate..

Once such time occurred on a drive home from Yosemite. I'd been vacationing with my two daughters and another young family. We had borrowed a large motor home and had a lovely time camping out in style and seeing the park.

Somehow when we packed up our assorted children and belongings for the drive home, I ended up as the lone adult in a small car with three kids under four. The other grownups drove the motor home; we made plans to meet up for lunch.

Shortly after I exited the park I lost sight of the motor home. I pulled over on the side of the road, waiting for what felt like hours for the others to catch up. I sat there, trying to entertain 3 cramped, hot, hungry toddlers, singing "100 bottles of beer on the wall" for the umpteenth time. About this time a CHP car pulled over and the patrolman approached the car.

I went for my purse, figuring that I was about to be asked for my license. Panic set in as I realized I didn't have it. No, not just my license was missing. I had no purse. No purse, no license, no money. And no map.

Something you should know about me: I have ZERO sense of direction. Seriously. I get lost following a single wrong turn. In my home town.

Not only do I lack any innate ability to find my own way, I am also extremely gifted at getting royally lost. Most of my "what was I thinking" moments are related to this ability.

Think screeching the car to a halt smack dab on top of light rail tracks on a pedestrian mall. Oncoming train blinks its headlights in warning, onlookers snap pics on their cell phones (certain that what they now witness will head the 6 o'clock news).

It's amazing, actually, that I haven't managed to earn myself a Darwin Award. Yes, I am that brilliant at getting lost.

So there I was: 100s of miles away from a home I had no idea how to get to, no money for gas or food, no map, three hot, hungry (and bored) toddlers. I've concluded that the missing motor home must have gone off the road, killing my husband and friends. And here comes a CHP officer signalling me to roll that window down.

God, I needed a hug. I really, really, really needed a hug.

I don't think CHP officers are allowed to dispense hugs.

My husband Matt fears hugs. He avoids them pretty much as often as possible.

You know that feeling of warmth and love, of "coming home" that accompanies a really great hug? When Matt allows that feeling to gain purchase, he collapses. His head droops; he loses use of his arms; his legs give out. He must either lay down or fall down. Matt has to work very hard at times to not feel any strong positive emotion. Matt has narcolepsy with cataplexy. His brain has turned traitor.

Is it healthy to completely eschew physical affection in a relationship? To prohibit the sharing of positive feelings? I think not. And I am so very thankful that Matt agrees.

That said, how do we find a place of compromise -- a level of affection that nourishes our relationship without debilitating Matt?
I love a really good hug. Sometimes I need a really good hug.

But my hugs make my husband sick.


  1. ok, and the trip and the policeman and the no purse... you kept my attention.
    Hugs to you Trish.
    I am there now with no hugs from Jim, but my reasons are different. They used to hurt me(neuropathy). Now I want them, and Jim doesn't give them that often now because I turned him away. I guess he thought that the hugs and touching was intentional.Teresa Larsen

  2. Thanks, Teresa! You tell that man to give you some big hugs -- or a nice foot rub. I'll bet he'll go for the hugs :o)

  3. Hello Trish and Matt,

    Hugs, yes, I love them too and as one of your many friends who adore you, I love visiting with both of you. I am learning so much from you. I was slow to learn at first. When Matt's symptoms first surfaced I did not "hear" you when you said positive emotions (including hugs of course) triggered an episode for Matt. So what did I do when ever I had lunch with the two of you? Started our gathering off with a big hug for both of you! Matt of course would have an attack, and it STILL didn't dawn on me that my hug probably triggered it. I think is is very diffiult to grasp the full impact this disease has on families lives. Even when it is in front of you. I still cringe with guilt for not "getting it" faster. But I am hearing you now! I am amazed by the strength you both have and will keep you in my prayers. You are a couple of very gifted bright minds who deal with this disease with grace and grit(however that is possible and best for you)and yet you still find the energy to help others who might learn from your experience. I am ever more proud and fortunate to call you my friends. Love you much! Shelley

  4. Shell -- no feeling guilty allowed. We are all in this together as we figure out how to keep Matt involved in relationships without making him so sick he can't function. I'll ask him to be sure, but I don't think he wants to completely distance himself from hello hugs and that sort of thing. Just don't do it anywhere that he might hurt himself if he collapses!


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