Our family had the amazing experience of spending our recent vacation volunteering at NEVI Fest, the New England Blind and Visually Impaired Ski Festival at Sugarloaf Mountain. In Ella's words, all we could say was, "WOW."
(Hello, Sugarloaf. Yes, we want to sell our house, relocate and spend all our days skiing.)
Our cousin, Noah, (technically a cousin but more like a nephew) is eleven-years-old and was born blind. He is an exceptional human being, wise beyond his years and with more talent in his left pinkie than I will ever have in my life. He has two incredible parents who have devoted their lives to providing Noah with a depth of experiences to take in life fully, perhaps one could argue even more fully than a sighted person, through his remaining four senses. He is an intelligent, witty, New York Times- reading boy with a sweet and beautiful heart and a mind of such advanced intelligence that I think they may already have his job waiting at Apple.
Seriously, if you want to feel inspired, just spend a day with Noah. That kid has more of a pulse on how to live than most adults I know.
Our girls just happen to adore Noah.
NEVI Fest is an event organized by the incredibly generous Bruce and Ann Marie Albiston and made possible by the multitude of volunteers from Maine Adapative Sports and Recreation. The countless volunteer hours these folks put in to make this event possible is truly extraordinary. Maine Adaptive has guides that help all sorts of skiers who need adaptation and assistance to ski down the mountain, from folks who are blind or hearing impaired, to physically handicapped skiers or people with mental health issues, these volunteer guides are trained to make all sorts of accommodations to help these skiers. At NEVI, all the participants are either blind or visually impaired but there are some that require more assistance such as tethering (a guide assisting from behind with the use of tethers and anchors) or sit skiing for those who cannot ski standing up.
I'm telling you: INSPIRING.
Different blind skiers have different preferences on how they wish to be guided. Noah likes to have his primary guide right behind him giving him verbal cues through the two-way head set (called a Scala rider- it is what motorcyclists use to communicate). Then he has another guide, called a blocker, whose job it is to run interference for any sighted skiers who might not be paying attention and might pose a threat to a blind skier. This guide is the skiing equivalent of a bouncer and is a job I think I might relish.
Here is Noah skiing in the foreground. I'm not sure why there is a third person in there but normally there would just be the two. The fluorescent vests make these teams very visible on the mountain.
It was such a wonderful experience to be a part of, both for us and our children to help out and get some perspective about their lives as sighted people and to celebrate Noah and all that he can do! We did not do any ski guiding but instead helped participants get where they needed to be, helped get food and drinks and assisted them in non-skiing events such as the group snow tubing. I saw my children begin to make the connections between all that they took for granted and watched them dig a bit deeper when they were tackling a tough slope or took a scary fall.
The first night of NEVI at the pizza party meet and greet I had the singular pleasure of meeting a blind teenager (and close friend of Noah's) who asked me if I had ever skied blindfolded. How about riding my bike blindfolded? I was ashamed to admit I had not. He asked me, "Oh, are you someone who takes your sight for granted?" to which I could only stumble out the words, "Well, yes. I guess I am." Then he schooled us at Foosball.
Have you ever been beaten at Foosball by a blind person? I highly suggest it.
I went to sleep that night in the dark unable to stop thinking about how entirely lucky I was to be able to see. All week as I helped people with activities that I do all day unthinkingly (getting a cup of coffee, finding my own gloves, getting breakfast, walking down the hall), I could not get over the amount of independence I am afforded each day because of my sight. These folks, so much less independent in an unfamiliar environment, would often simply sit in the crowded, noisy ski lodge, unable to move about and socialize. It is an entire element of living that I take for granted and so I made sure to go out of my way to chat with them and reach out.
I also made a ton of dumb mistakes. Oh my, I can be so numb sometimes. I would step outside in the morning and exclaim to Noah, "Oh the mountain is stunning this morning!" I would stay stupid thinks like, "See what I mean?" or being at the top of the mountain and saying, "The view up here is breathtaking!" I was helping one blind skier find her hat in her canvas bag under a table crowded with other's belongings. She said, "My hat is in my canvas bag" to which I nearly replied, "Is it the blue one with white strips?" Luckily I caught myself, held out the bag for her to feel and said instead, "Is this your bag?"
Then there was the time I was helping Noah get on the chairlift (just to get from the condo to the base lodge, not to ski down the mountain) and helped him get in position only to forget to tell him that the chairlift was coming. He genially said, "Hey, Aunt Suz, next time could you count down for me '3, 2, 1' when the chair is coming?"
I ate a lot of humble pie that week. I think I apologized to Noah no less than a dozen times -"Noah, I am terrible at this. Please forgive me." - to which he would say, "Oh, you're fine!" or "Ha! No I don't see what you mean! Remember, I'm blind!" and then laugh his head off.
Noah is so good at asking for what he needs. He will ask for help to identify a Keurig cup when he is making hot chocolate for everyone but be totally determined to do the rest himself, feeling his way along to success. He loves the girls and is so good to them but will lean in and whisper, "I would prefer for you to guide me instead if that is okay" and I love that he can advocate for what he needs.
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| The four of us with Aunt Suzie, Uncle Buck and Noah. Aunt Suzie and Uncle Buck have become Maine Adaptive guides so while Noah is skiing with his guides, they are helping other skiers defy all logic and ski down the mountain. It is a family affair and we were very lucky to be a part of it for a few days. |
Perhaps one of the more enlightening parts of my week was when Aunt Suzie was telling me the reason they invest so much in skiing. She said that for a blind person to understand, for instance, an onion he must experience an onion. You can speak until your blue in the face about onions, but in order to really get an onion, he would need to feel it, to peel it, to smell it, to taste it. So much of what they work to provide for Noah is this level of living through experience. It made me think endlessly about all that I take in about my world through my eyes and just how critical it would be to replace all that visual input through other sensory channels. Skiing is Noah's physical experience of the world, it is his winter sport (because he cannot participate in, say, basketball), it is his way to connect with others in way that is challenging among his sited peers and it is an entire level of independence that is shaping his present and his future.
Noah is, not surprisingly, a very skilled skier who, despite the fact of not being able to see the ski slope can ski the double black diamonds of Sugarloaf. We were lucky enough to ski with him a little bit each day and he took us all over the mountain, showing us all the fun side trails, how this one connected to that one and the off-beat, little-known trails. He has the mountain mapped out on the neurons of his brain and, while I can't say I know how he "pictures" it, he can tell you the level of difficulty of every trail, how many steep pitches it has, if it is at or above our skill level and what lifts to take in what order to get where he wants to go.
Yes, we had our very own Sugarloaf guide who happened to be blind.
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| Atop Sugarloaf. From the left: Aunt Suzie, Me, Ella, Maya, Sandi, Noah and his wonderful guide Emma. |
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| The kids got to go to the top of the mountain one night in the Snow Cat! |
Sandi had been mostly playing this with her and I had been staying back with the more cautious and controlled Ella. Then we switched and Maya was trailing me like a shark hot my fishy heels. We went along for a while and then she very sweetly and innocently said to me in her adorable little voice, "Momma...how about now it is my turn to be the fish and you be the shark?" I said, "Okay, that seems fair..." and before I could even finish the sentence she took off like a fish fired out of a cannon down the mountain. I was skiing practically full speed trying to catch her, having been slightly delayed by my pure shock.
I blasted down the mountain calling her name, then shouting it, but to no avail. She couldn't hear me at all without her hearing aids and through layers of fleece around her ears. I'm sure I disturbed the tranquil skiing of the people I sped past as well as any roosting birds or hibernating animals. I finally caught her on a flat (where her 43 pound frame can't help but slow down) and she looked genuinely surprised to see me arrive in such state of panic and breathlessness.
When Ella and I went back and watched the Go Pro video Sandi had taken of this event it was quite humorous to hear her talking aloud: "What is Momma doing? Is she letting Maya go ahead? Oh, Suzanne. Don't do it. Oh NO. She has let her go!"
I had been duped by a seven-year-old.
One of my favorite moments of the week was being up at the very top of the mountain and watching my family ski in front of me. The strides we have all made as skiers this year simply amazes me, especially since the three of them have only been skiing for 2 months. The top of any mountain is always a sacred place for me and this moment right here was just perfection.
There was a good deal of sisterly bonding which always does a pair of mother hearts good.
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| Ella has been DYING for poles and Noah gave her his old pair. Every time I turned around she was in a full ski tuck with her poles behind her going down the most meager of pitches. She even helped her sister along the flat parts of the slope back to the condo. |
On the last night of NEVI there was a banquet where participants received medals for the ski race. They had categories for people who skied only with voice commands, those that skied in tandem with a guide (like a tether or arm hold) and sit skiers. It was incredible to watch their pride at their accomplishment and to hear them talk about what NEVI means to them.
But the best part of the banquet was the keynote speaker, Erik Weihenmayer, who is a blind adventurer, mountaineer and motivational speaker. He lost his eye site at age 13 from a rare, degenerative eye condition and has gone on to inspire countless people, blind and otherwise, to embrace the mentality of "no barriers". What this man does defies all logic. He has climbed each of the seven highest peaks on every continent. He recently completed a white water kayak trip down the Colorado River in the Grand Canyon, kayaking solo with the aid of a two-way radio to receive commands from his guide. He showed us video footage of his journey, including repeatedly capsizing in one particularly difficult current and having the sheer grit and determination to do it again until he mastered it.
Ella and I are reading his book as part of homeschool. I highly recommend it for anyone, blind or sighted.
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| We just had so much fun together all week. |
Here is our own view from the top of the world.
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