As I continue my blog, I will try to be more current and write in real time when I can. In any event, I write now looking back to January when I stayed at a friend’s cozy house in Grand Marais, Minn., on Lake Superior. This was a much-needed break before I got into the busy speaking season in schools during February I Love To Read Month.

I thought about how 15 years ago Barry and I had driven this same road to one of the many ski races our two boys competed in each winter. There are many times during this journey with Barry’s frontotemporal dementia (FTD) that I forget to remember how he was before I got so mad at him and before we discovered he was sick.

Remembering Barry before FTD

As I drove past the ski area, I thought back to our skiing adventures and how much Barry loved getting totally involved with all our kids’ sports. When Kelly competed in figure skating, he sat there so calm and cool. I, on the other hand, paced and bit my nails as she skated onto the ice.

When she completed her program, Barry would turn to me and let out a huge sigh! Barry was as nervous as I was, but he didn’t show it until she was finished. Then he would get up, saying he had to get a coffee or use the restroom, but I knew he really went to see if her scores had been posted. He didn’t care if she won, he was just so proud of her. He often wondered aloud how she was brave enough to skate in front of all those people.

Then it was soccer, a sport he didn’t know anything about. But when our kids got into soccer, so did he. Barry became the soccer club president and helped design a new logo for the Bloomington Soccer Club. When son Pat was about 10 years old, Barry coached his team to the city championship!

When I go see Barry now in the nursing home, I can’t talk to him about anything, really. We can’t talk about the old days. When you have someone with FTD, it is hard to imagine what life was like before this awful disease struck. But it is important to remember who Barry really was.

Overcoming his fear of skiing

On our first date, Barry told me about breaking his leg as a teenager at Buck Hill, a ski area near Minneapolis. It was a bad break and obviously a huge event in his life. He told me many times that he would never downhill ski again. We got into cross country skiing with the kids, but as soon as they saw downhill skiing, that’s what they wanted to do.

I come from a family of skiers. In fact, I learned to ski at Lutsen, Minn., not far from where I was staying this week. My family skied almost every weekend in town and took some wonderful trips out west to ski and picnic in the mountains. My brother Dave, a ski racer and coach, taught our kids to ski. Soon I was taking them myself to ski on weekends. Barry was always left at home because he was terrified to ski. By the time the boys got into ski racing, Barry was tired of being the guy sitting in the lodge doing nothing. So he booked a winter break trip to Sun Valley where he signed himself up for lessons. While Barry tried to learn to ski on the bunny hill, the kids and I explored the mountain. On the very first run, the boys sped ahead of Kelly and me. We were too slow for them!
sun valley
Even with lessons, poor Barry spent a lot of time falling. His instructor suggested that he try the new, very short skis that had just come out. In a day, Barry was skiing with us down Sun Valley’s highest runs! Barry was a pretty good ice skater and using short skis felt like skating to him. In the beginning, the chair lift caused a bit of problem for him though. Once when he was trying to get off the lift in Sun Valley, he got nailed really hard in the head by it. I even mentioned the incident to the neurologist when Barry was first diagnosed with FTD, hoping that the accident was the cause of his problems. Apparently it was not.

As years went on, Barry became president of the boys’ racing team. I think many ski families from back then will remember Barry going down the hill on his short skis, checking on the gates or helping to keep the course clear of ruts! He loved race days and he loved his kids so much that he let go of his fear of skiing! I don’t know if I ever told him how proud I was of him – but I hope I did.

His favorite place on Earth

I can’t speak for Barry, but I think if he had to pick his favorite place on Earth, it would be Sun Valley. These days, I am starting to prepare for when Barry dies of FTD — and he will die from it. I don’t really know when; it could be tomorrow or years from now. But I do know that I will take some of his ashes and spread them on top of Dollar Mountain in Sun Valley where he learned to ski. I think he would like that!

Hikes done during a week in Grand Marais

Hike forty-six:  Snowshoed on Pin Cushion Mountain just up the Gunflint trail from Grand Marais.

Hike forty-seven: George Washington Pines http://www.visitcookcounty.com/wp-content/uploads/2013/12/George-Washington-Forest-Trail2.pdf

Hike forty-eight: A second hike of the Kadunce Trail off Hwy 61.

Hike forty-nine: Snowshoed on Devils Track River off Hwy 61 This was magical hike on thick ice with some open-water sections on the river.

Hike fifty: On the trails behind Lutsen ski areas, walking at dusk and remembering Barry and all our ski trips before he got FTD!

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4 comments on “HIKE FORTY-SIX TO FIFTY
  1. Wendy Hitch says:

    What a great blog. We have much in common … children who played competitive soccer, were ski racers and I have a daughter who was a competitive figure skater! Amazing our paths didn’t cross. I will have to ask my husband if he knew Barry. My mom had dementia and I can so relate to what you write. They say they die 2 deaths – and those who love them grieve twice … at the forgetting who we are and the actual time of death. I am so very sorry that you are facing this now, and know my thoughts are with you. Wendy Hitch

  2. Ann Hustad says:

    Yes Nancy he would like that!

  3. Susan Lund says:

    A beautiful tribute to Barry.

  4. marlan carlson says:

    Beautifully written – a wonderful tribute. I learned a great deal about your family.
    Thank you.

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