Sunday, February 11, 2024

31 Years

31 years ago today I was diagnosed with probable MS. That is the context for the following... it has been a roller coaster ride, but the past year has been one I never expected but continued to dream would happen. 

A big part of my improving in mobility and stamina has been in my skiing. Last February (2023) I started skiing standing up without having a tether attached to my skis (it’s like taking the training wheels off a bike). This past week, for the first time I felt a calm come over me as I skied, so I felt comfortable going faster and faster (I didn’t feel like each bump on the snow was going to cause me to lose my balance and hit the ground), turning with ease, and stopping quickly if needed. I smoothly navigated around other people on the slope, passing quite a few of them. And I wondered, this new feeling, which lacked the jerking of my legs I felt in the past - is that how other people feel when they are comfortable skiing? Is that what "natural" feels like? It's wonderful.

Extending that to walking, I know that people walk without concentrating on how their legs might move without jerking or dragging, where they place their feet with each step, what distance they can walk before starting to trip over nothing and stiffen like a short-circuited robot, and so on. I wonder, in my journey, how close I can get to "natural" walking, that I assume would come with a sense of calm. I do remember the years when I walked without having to concentrate on each step. I’d like that back.

While skiing this past week, I looked up as I made my way down the slope. The mountains were so beautiful - the snow covered them like a blanket. The sun hit the blanketed snow and brightened the scenery. I smiled through a few very emotionally-generated tears, thinking how grateful I was to be surrounded by such beauty, to feel at one with my own body after so many years, and to feel my body's connection to the ground. This amazing experience is the "PS" or “Coda” to the skiing story I told last summer.

Here's the story. It's what I told an incredible group of people who listened, thought, and laughed with me as I talked about my skiing journey, at a dinner this past summer.. and I finally wrote it out here:

I entered the Breckenridge Outdoor Education Center (BOEC) for the first time when I was 26 years old, and that was after about 9 years of having symptoms like loss of feeling, weakness, numbness in my legs, numbness in my hands, and when I was 20 years old, I was diagnosed with possible multiple sclerosis (MS). So at age 26, I entered the BOEC and I was still walking and I wasn't using any mobility devices. We thought that stand up skiing would really work for me. I had never skied before, and so we got all that we needed and we went up to the magic carpet (learn to ski area), and I stood there...... and it just did not feel right..... and then I started to move..... and it still just didn't feel right. And so after I would guess an hour trying this, my ski instructor, who was an intern, said to me, "Well Beth, you can continue to learn to stand ski, and we might get you up to Silverthorne (ski slope) by the end of your time here. Or, you can choose to go back to the ski office, and we can have you try the bi-ski and you can sit ski, and then we can have you go up to the top of Silverthorne right away." 

And so in that moment, I could either choose frustration, which was actually 9 years of frustration, not just that one hour, or I could choose to go up and try to be an athlete again. And so I chose the bi-ski. We went right to the top of Silverthorne, and for the rest of my time that trip, I continued to go down Silverthorne.

Four takeaways from me for this were: first I had the glimpse of the athlete who I defined myself as before MS; second I got to be outside, I love to be outside; third, I got to be with people (glad you are all here tonight); and fourth, when I was a competitive runner, I really enjoyed passing people, so I got to pass people again, and that was the greatest part. (Insert laughter)

How is the BOEC changing my life? It changed it in that one day and I continued to come back. The great thing that the instructors do is they pivot quickly: pivot from frustration to possibility, and they do it in a positive way. There was none of: "well, you can't do this and so we suppose you're going to have to do that." There was: "instead of doing this why don't you do this other thing because it makes a whole lot more sense to you wanting to be an athlete."

For many years I continued to come back to the BOEC and during that time, my health declined for about 12 years. And then a strange thing happened: I started on a medication that isn't supposed to help much, and it doesn't help many people, but it has changed my life, because back then I was using a wheelchair which was totally fine; I could hardly write (my hands didn't work). There were a lot of things I couldn't do. I was frequently exhausted and life was not easy. But this medication has changed my life and I think it is only fair because all the other medications that  work for other people did not work for me. So I started standing again, walking again, and about halfway through this time of learning to walk again... Jeff might not remember this, but I said to Jeff, "Hey Jeff, I want to try stand skiing again." And Jeff said "OK Beth, you can try that." (laughter)

This became an unplanned, unpredictable, 3-phases approach. It started with ski legs (phase 1), which are a frame that can be adjusted so you don't have to move at all so I felt like I was inside a bubble going down the ski slope. That was successful. And I should say that what I had been wondering in the process of doing this was, the feeling that I had when I first started to stand ski, what was that? Can I get past that? I didn't have that feeling when I used the ski legs, and so I still wanted to challenge myself and experiment a little more... and so I said to Jeff, "Hey Jeff, Do you think I could try stand skiing, but with the outriggers, like I used to, try to do?" And Jeff said, "Sure Beth, you can try that." (laughter)

And so the next year (phase 2) I went up with outriggers, being tethered, and I stood at the top of Silverthorne. And I felt that old feeling, but I could finally understand what that feeling was. It was the feeling of not understanding where I was in space, where my legs were relation to the ground. So my skiing instructor would have to call out the turns for me, and then they'd say "That was a great turn, Beth!!" And I would think, well that's great, but I can't feel that, I have no idea what I just did, but ok, I am stand skiing.

Fast forward to January of 2023. Phase 3. We went up to the top of Silverthorne with the outriggers, and I stood there, and this amazing thing happened. I felt where I was in space. And I felt where my legs were in relation to the ground. And when my instructor called out the turns, I could feel turning, and I could feel how that felt in relation to the ground. And that was the most amazing feeling to me.

And so my instructor, JR, at the end of that skiing lesson, where I had skied a lot better because I could feel what I was doing, he said to me, "You know Beth, I think your next step here is to try to ski without being tethered.” And this is a little bit of a joke.... you see, people know that I love to be tethered - it's my emergency brake...... (laughter) But I said "OK, fine, we'll try that."

My next ski lesson was with Nick, and so I told Nick that this was what we were going to do, we were going to try to have me do the stand ski thing without the tether. And as we were riding up on the lift,  he said to me "You know Beth, we wouldn't be having this conversation a year ago." And I said "I know, you're right, it's really strange isn't it, but cool? But, how are we going to get me down this slope without the tether?" (laughter) And he said "well, here's what we're going to do..." and it's this pivoting continually that the BOEC instructors do...  he said "I'm going to go out in front of you, and I'm going to ski backwards." And so I said "so you want me to tell you when there are people in your way?" (joke - laughter) Nick: "I'm going to ski backward and you're going to follow the way that I go."

So at the top of Silverthorne, I felt where my legs were in relation to the ground and all that. And then Nick went out in front of me and I followed him, down the top part of Silverthorne. And that's somewhat where I ended the year. I did more things too. The BOEC has meant so much to me because throughout this whole time, I don't have a condition that stays the same. It's getting worse, it's getting better, it's this up and down, and the BOEC has been an organization that has pivoted all the time, with whatever I needed. I do joke with some people in the BOEC office that if there's a competition on who's used the most equipment there, I win. (laughter)

To just wrap this up, the BOEC has been such a positive organization that never dwells on oh, you're doing worse. Instead, they say ok, we're going to make an accommodation here, and then you're going to continue being an athlete, and let's just go out and ski.

Thank you so much for having me here. I hope that you all get from this how much the BOEC means to me, and I'm not, of course, the only one, but it's been such an important part of my life over the past 20 plus years. Thank you very much.

(Go to the top of the post to re-read the Coda. Note that Nick’s comment in 2024 is that things are different, in a good way, this year. He never thought I would ski faster.)


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