Two less things on my bucket list

My EB sometimes makes walking long distances a challenge. For example, a long hike in the woods on uneven ground can incapacitate me for days. A walk through the grocery store in the wrong shoes can do equal damage. So, when I announced that I was going to participate in a 5K walk, I was greeted with significant criticism. I was even called “crazy” at one point. However, the way I see it, if I feel confident enough to achieve something most others like me cannot, I WILL do it.

On Friday, my afternoon was scheduled to head out to the University of Minnesota Amplatz or the Ronald McDonald House nearby. There, I met two very lucky children, Sahar and Jax. Sahar received a Bone Marrow Transplant from her brother about 4 months ago. Jax received his first round of chemo in preparation for the transplant on the night of July 6. I’m not as severe of a case as they are, and so often between Friday and Saturday the question “What is your involvement with EB?” came up. “I have EB,” I’d reply. “Oh! You can’t tell!”. It was humbling to meet them. Sahar is a treat! I’d already been following her progress on Caring Bridge for months so it was nice to finally put a face to the name. She doesn’t say much, but says so much in those few words. Her 3 and a half foot stature makes her look younger than her seven years.

When I woke last Saturday morning, I had only 4 hours of sleep following a night of many drinks and many tears as I bid farewell to some of my closest college friends. My makeup still stained my cheeks and I was terribly sore… But I still did it.

George and I arrived at Harriet Island in Downtown St. Paul (which, incidentally, isn’t even an island) by 9 am and we were lined up by 9:30 to start walking. Along with nearly 1000 others, I walked. To help raise money to help others with the same skin defect that I was born with, I walked. With my husband of ten years by my side, I walked. I walked each and every step of those 3.1 miles.

At the halfway point, I remember feeling that burning and adrenaline surge. Somehow, the second half of the walk went twice as fast as the first. It was at least 90 out and terribly humid alongside the river and though I knew I wasn’t feeling my best (as heat and humidity actually exacerbate EB) I pushed myself to the finish. I did, however, make a quick exit once finished.  I hadn’t eaten, I had little sleep and needed an air conditioned room quickly. My muscles were sore, but my skin felt great. My feet were tired, but with a little rest, I was able to walk around my hometown later that night (in more comfy shoes, of course).

I felt a sense of accomplishment in the end and was thrilled that yet another goal I had made for myself for this trip was reached. That was enough.


Before I left Little Rock, I had mentioned to George that if we had time, I wanted to find a spot in Downtown St. Paul that meant something to me. It wasn’t much of a place… just a parking lot to some. But that parking lot to me meant a significant memory. I knew it was under a bridge just off the river, but how I got there nearly 20 years ago was beyond me.  He just told me to drive and I drove. If he told me to turn left or right, I did. How I got there was beyond me.

I was nineteen. It was mid-March. He had just broken up with his girlfriend. I was a single college student still awaiting everything. A friend of mine was in town from Tennessee and he wanted someone to hang around that night. And, so, she and I picked him up at his house and we drove.

He finally asked me to stop the car under a bridge in downtown St. Paul. He got out of the car and screamed in anguish. She was his first girlfriend and she dumped him hours before. He had whiskey with him and he shared it with my friend, who was in the back seat.

I don’t remember the song that was playing now, nearly 20 years later, but I remember him saying “by the end of this song, I’m going to kiss one of you.” My friend had just met him, so she wasn’t in the running. That left me. And so, I did. It was my first “real” kiss.. under the bridge, downtown.

Moments later, there was a knock on my window. Some kid, about our age, asked if we were interested in going to a party. What 19-year-old would say no? We followed the kid into a cave that was directly behind my car. We climbed in and walked through the cave for almost an hour when I was blinded by someone’s flashlight. “Put that thing down!” I yelled. And so, the cop did. He gave me 30 seconds to move my car before he was calling a tow truck, he told me. My friend dropped the whiskey bottle and buried it with her foot and out of the cave we climbed. We never spoke about that night to many others except amongst ourselves and frankly, I left that parking lot so quickly, I didn’t remember how I got out.

Every once in a while, I would remember that night and wonder where that cave was. A few months later, some teenagers were killed climbing around the same caves we were in and they were quickly boarded and blocked off forever.

During my 5K walk, we were following what appeared to be a newer biking trail, that led to that bridge. We went under that bridge and there was the parking lot. I looked to my left and there, boarded up and somewhat hidden by overgrowth was the cave I hadn’t seen in nearly 20 years. I paused, smiled and reminisced about that night 20 years ago where I came within seconds of getting arrested.

My second goal for the day was reached. I found my spot. I was happy. I had hugged him good-bye just 8 hours earlier, but I wished he was there with me to laugh about how crazy we were at 19.


Posted on July 7, 2012, in Miscellaneous. Bookmark the permalink. Leave a comment.

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