Adaptive Skiing

Yesterday was the final day of winter.  And although I am really looking forward to sunny spring days and warm summer nights, I am going to miss all the winter activities.  I recently learned to ski despite the fact that I thought skiing was something that I would never do.  Mainly because every time I have pictured myself skiing, I envisioned heading straight into a tree or some other object/person not within my field of vision.  Although running into objects makes for some great stories and blog material, it’s not my idea of fun.

Maybe it was the Winter Olympics, or my dad telling me about a skier with RP in the Paralympics that inspired me to try cross-county skiing this year and hopefully alpine skiing next year.  I had no idea that adaptive skiing even existed, but once I started looking into it more, I learned that there are multiple organizations and foundations that support skiers with disabilities.  Although I have not yet had the opportunity to receive any special training or adaptive tools, it is something I am looking into for the future.

I’ve been living in a mountain town for over 7 years, and now I am finally starting to experience all there is to offer right outside my front door.  So I went from never having skied before, to skiing 5 straight days in a row, and loved (almost) every minute of it.  My mom and I took a lesson, which was fun because she had also never tried skiing before.  Once we figured out how to get our boots in the bindings, we were off! Sort of.  There was some falling involved, but we had a great teacher and soon found ourselves gliding along (mostly).

In terms of my vision, Nordic skiing was easier than I had anticipated.  There are not a lot of obstacles in Nordic skiing and, for me, it was pretty easy to stay on the path once I got my skis in the right grooves.  When the sun was out, and I had my polarized shades on, I found the shadows against the snow had a dark enough contrast for me to follow the path.  But when there was not enough contrast from the sun, it was often hard for me to anticipate which way the path was meandering and when there was an incline or decline.  I think this is where some adaptive skiing techniques/tools could really be helpful.  But in the meantime, my family and friends are my best guides.

Skiing with my husband was the most helpful for me because (as usual) we are so in sync and he just knows to ski ahead so I can follow his path, and he shouts an occasional “small hill coming up ahead” over his shoulder.  I’ve said it in previous posts, but there is just something about some people, like my husband, that is so seamless and easy when they assist me.  I continue to be thankful for this in my life.  And I was fascinated to learn about Danelle Umstead, a competitive alpine skier who also has RP, and recently competed in the Sochi Paralympics.  Her husband is her skiing guide, and I highly recommend checking out their inspirational story.

After a few days of skiing with my mom and husband, I was feeling somewhat prepared when my two best’ies from Seattle arrived with their children for a few days of playing in the snow.  The first day we went out, we got a bit of a late start.  We also did not anticipate how slow we would need to go with young children whom had never skied before.  We started on our ski journey around 3:45pm, and after about an hour, we realized that we were not sure how much longer we had until the path would lead us back to where we started.  And, in fact, we were not entirely sure WHICH path to take to get back to the beginning.  As we encouraged our kiddos to pick up the pace, I could feel my anxiety level rising.  Similar feeling to my post a few years ago “When Darkness Comes”.  To use an analogy my daughter would love, it’s like I am Cinderella at the ball and I know that at the stroke of “midnight” (darkness), everything will be different for me.  If the kids had not been skiing with us, I would not have been so panicked because my friends are so good at guiding me in the dark and I am used to having to adjust in darkness.  But it was the thought of not being able to help guide the children back safely in the dark that really got my heart pumping.

We finally had the brilliant idea to have the kids take their skis off so they could walk without falling, so we were able to pick up the pace a bit.   Also, I had forgotten how much light snow actually provides, and even once the darkness started to set in, I was able to follow the path better than I anticipated. But we still were not quite sure where we were going or how long it would take.  It had been at least 45 minutes since we had crossed paths with any other people, so there was no one we could ask for directions.

But we finally came across a good Samaritan named Judy who was out for an early evening ski and knew the paths very well.  She noticed that our group needed assistance.  What gave us away? Was is the whining children? Or the bewildered looks on our faces? Or perhaps it was because we were screaming “help!” at the top of our lungs.  Only kidding on that last one – we had somehow not reached utter panic.  My poor husband was at home worried sick about us, though.  It was close to 7pm by the time we got back to the car.  We laughed as we loaded the kids into the car – bemused at our unintended adventure.  And believe it or not, we woke up the next morning and went out skiing on those same trails again.

 I typically dread winter time, but this new hobby has me looking forward to next winter already.  It’s also served as a bit of an eye opener (oh yes – pun intended) that there are plenty of sports and activities I can do and all sorts of adaptations out there for people with low vision.  It’s just a matter of seeking it out and going for it.
 Ski

3 Attributes You Will Quickly Develop as a Blind Mom

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A friend recently gave me an article on 4 blind moms featured in “Real Simple” magazine.  I was immediately struck by the beauty and strength of each woman, and I was a bit jealous of them for having such close blind friends.  One of the women, Joy (great name!), talked about how they are each in awe of one another’s feats.  “It’s like each of us has mastered a skill or has a bravery that the others don’t.”  They all have guide dogs and are starting a national group called “Mommies With Guides”.
One of the things they discussed in the article was what they do differently as parents without sight.  This got me thinking about my own parenting, and while I do have some vision, there are definitely some skills I have had to develop as a mom with low vision in order to be a good mom.  Some of these are still works in progress, but they’re definitely the “muscles” that get the most use, and therefore the most strength.
  1.  ESP:  One of the moms in the article said that since she can’t see her kids’ expressions to know whether they’re sad, happy, angry, etc. she ends up doing a lot more talking about feelings than most parents.  I do a fair share of talking with my girls, especially right before bed.  However, any parent out there knows that kids aren’t always eager to do a lot of talking when they’re upset.  I have learned to sense into their emotions— from obvious times when they run with angry footsteps to their rooms or more subtle times when they seem quieter than usual.
  2. An honorary Ph.D in Organizational Planning and Transportation:   I probably spend at least 20 minutes a day planning and scheduling rides to various activities , appointments and functions, and my guess is this time will increase as my youngest begins entering the world of extra-curriculars in a few years.  I would say that I was born with decent planning skills (my in-laws lovingly nickname me “the family planner” for all the trips and outings I plan for our family).  But I sometimes get sloppy and very last-minute and unorganized about it.  You’d think engineering plans so often would make me a pro at it, but it sometimes just makes me tired!  This is definitely one of the areas I’m still working on, but as a VI mom, I will have plenty more opportunities for practice.
  3. A sense of humor:  Every mom, sighted or not, needs a little laughter.  But for a blind mom, it’s absolutely essential to not take ourselves too seriously and to have fun with the life we’ve chosen.  My almost-8-year-old’s new favorite thing is to ask me to tell her yet another one of my embarrassing stories while she belly laughs at her entertaining mom.  I find it pretty therapeutic myself.  She has certain favorites that she has me repeat like folklore.  Such as when the hostess at the Chinese food place near our house began steering me around the restaurant like a race car.  Or when I knocked over a glass getting up to answer the door and screamed at the top of my lungs but then greeted the person at the door as if no obvious loud raucous had just taken place.  Yup, my girls and I do a lot of laughing.
Yesterday morning I actually ended up getting on a conference call with “Mommies With Guides” (as part of their monthly national meetingB), and I was laughing because as 3 out of the 4 founding members introduced themselves on the call, I felt like I was getting to chat with these celebrity moms who I was in awe of when I read the magazine article.  Since there were a number of moms on the call, I was at first disappointed that I didn’t get to really interact as much as I had envisioned (though they each offered to talk one-on-one with anyone who wanted to on another day).  But as I listened to them encourage one particular mom who clearly needed reassurance, I was really moved by the ability of fellow moms to empower one another.
And I noticed yet another thing blind moms can develop when they put themselves out there:  an additional support system.  I am really excited to watch this group grow.

Take Inspiration: Blind Architect on TED Talks

As we head in to the New Year, I would like to dell out some encouragement to help our readers welcome a strong and hopeful 2014.
Blind Architect, Chris Cowney, gave this incredible TED talk on designing cities with the blind in mind, and how this not only benefits the blind but also offers major advantages for the cities themselves.
My favorite take-aways from this talk are:
  • It has been said that there are two groups of people in the world: those with disabilities and those who haven’t found theirs yet.  I love this concept, as we all have something that we struggle with.  Ironically, blindness just happens to be very visible to others, but think of all the invisible disabilities.  Imagine if everyone had to walk around with their major life challenges tattooed to their foreheads for all to see.
  • Chris Downey joked that whenever he feels blue, he just goes outside and walks down the street since people are so encouraging and kind seeing him with his cane.  This is a good motivator for me, as I typically imagine people grimacing at me when I carry my cane. When I think about my interactions at airports and other public places, however, I remember how kind people can be. Chris talks about how some of his blind friends are offended by this, thinking people are pitying them, but he likes to think people are acting out of their shared humanity.
  • If architects design cities with the blind in mind, everyone benefits, not just the blind.  I think this is a really key point because I would venture to guess there are people who would frown upon designing a city with such a small percentage of the population in mind, forgetting that the types of designs that would help blind people would also make their city more pedestrian and envionmentaly friendly.
I am grateful for people like Chris, who use their talent and voice to speak on behalf of others.
As 2013 rolls into 2014, I plan to sit down and evaluate my own gifts and the ways my voice could benefit others.  Please feel free to join me. :)

Lessons in Decompression

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I have never been good at letting go. Tense conversations, goodbyes, friendship changes, job transitions, moves….all keep me awake at night far longer than it seems they should.
So it wasn’t entirely surprising when my plane touched down in Seattle 2 weeks ago, and I couldn’t immediately let go of real life to enter vacation mode.
I’ve been in this quaint, picturesque Bavarian-themed village in the Cascade Mountains since the beginning of July, and I’m only just starting to decompress. Prior to leaving for this trip, there were a lot of stresses at home and I pictured this serene, oasis trip in which I just played and played with my children without worrying about my typical daily to-do lists. I had this vision of myself, unplugged and ultra-present. Continue reading

Liebster Award

liebsterawardIf there’s one thing writers really need, it’s community with other artists. I have this amazing friend, Emily, who shares my love of writing. We belong to the same writer’s group and have fun drinking tea and/or wine over topics involving creativity, editing, publishing, and the like. She writes a hilarious blog and recently nominated me for a Liebster award. Thanks Emily, for your encouragement and for being someone with whom I can share writing joys and frustrations and engage in super-nerdy conversations.

As part of my acceptance of the Liebster, I had to answer the following 11 questions from Emily: Continue reading

Saying Goodbye to My Grandma Jean the Queen

Saying Goodbye to My Grandma Jean the Queen

The call came at 3am Wednesday. Grandma is dying. She probably won’t make it through the night. If you want to say your final goodbye, you should come.

The lights at grandma’s house were dim when we arrived, and the air was heavy. Short, labored breaths rattled out of her lungs, sounding like a child with croup. She lay tucked under blankets in a hospital bed in the middle of her living room; my cousin leaning over her, inserting morphine tablets under her tongue to keep her comfortable.

Being on hospice for the past week, the call had not been entirely surprising, though she had been so alert and responsive the prior few days that we had thought it might be weeks until the end.  But here we were, in the middle of the night, beginning our final farewells.  Some family members sat perched on the queen-sized bed near her hospital bed, while others lingered on the couch in the adjoining family room, taking turns leaning over her and whispering words of love and gratitude. Continue reading

News Flash

It’s been almost a full month since Joy or I have posted anything.  Shame on us! It’s not that we haven’t thought about blogging, but we’ve both been a bit pre-occupied.  Also, neither of us like to post out of any sort of obligation.  We like to write when we have something worthwhile for our readers.  Today I have something worth mentioning on the blog.  I’M PREGNANT!

Perhaps you’re wondering why I am wearing a mask in this photo and why the pictures to the right look blurry.  It’s not your vision (or perhaps in some cases it is…) It’s smoke.  I live up in the mountains and we’ve had wildfires over the last 4 weeks, which has caused a tremendous amount of smoke in our county.  Between morning sickness (which I think is misleading considering the nausea often lasts the entire day – not just in the morning) and the smoke stacks, I’ve been a bit distracted. But I’m happy to report that I am now 14 weeks along and feeling so much better, and the wildfires have subsided as well.

I will have more to share in a couple of weeks following my eye appointment in Seattle along with my first day of cane training.  I need to get as much done as I can before baby number two arrives in spring!

 

 

Accessibility Software Giveaway (first-ever doublevisionblog contest!)

To end our mini-series on “parenting”, we’d like to offer a chance for our readers to win a free reading assistance software, Kurzweil 1000 version 7, $1000 value (this version was released several years ago, but can be upgraded to a newer version if desired). The software is new, in package, and still shrink wrapped.

Here’s the challenge… this is for either parents of kids/adults with visual impairments or kids/adults with visual impairments to answer:

Kids/Adults:  Share a story/memory about how well a parent or teacher handled a situation involving your vision.

or

parents:  Share a favorite memory of how your child handled their vision challenges with humor, wisdom, a positive outlook, etc.

Email your submission to joy@doublevisionblog.com by Friday, March 2nd.  Submissions can be brief or detailed– it’s up to you!

We will post our favorite one as well as a runner-up to doublevision and will send the winner this software.

Progress

Yesterday my vision showed improvement on the peripheral chart for the first time.  I was hesitant to write about it yesterday because I wanted to have a second fields test to confirm the progress.  This morning, I took another visual fields test and knew without a doubt as I was taking it that my vision had improved.  Dr. Yu confirmed what I already knew by showing me the progress I had made on the visual chart.  The intense emotion I felt at that moment caught me by surprise and I began hugging my husband Torrey while tears streamed down my face.  I looked up and he was crying, too.  There were lots of other patients in the waiting room at that moment and they were sharing in my
excitement.  I started to laugh to myself as I thought “most people would be crying with sadness if their peripheral vision measured the same as mine right now, but here I am crying with happiness just to have this small increase in peripheral vision”.   Perspective is everything.

I’ve often described my vision loss as a giant puzzle with the border and center in place,
and lots of pieces missing throughout the rest of the puzzle.  Some of those pieces have been filled in, but there are still a lot missing and that will continue to challenge me in my daily life.  I want to focus on being grateful for the pieces that are there now, and I am anxious to get home and see the difference it makes in my daily life. I am hopeful that my fields will continue to increase as treatment continues. I will come back in 2 to 3 months for a second round of treatment.

I had a lot of doubts when I started this treatment on Monday, and had practically decided to just head home by Wednesday when I wasn’t seeing any results on the charts.  But I received a number of inspiring quotes, verses, emails and messages from loved ones that encouraged me.  I am finding it hard to wrap my Western brain around how this Eastern medicine could bring life to tiny cells in my retina that have been inactive for years.  How could ancient medicine show more results than modern medicine in treating RP? It seems researchers at John Hopkins University are wondering the same thing. A research study regarding Dr. Yu’s treatment is currently awaiting funding.

There is so much more to write – so much more I want to share about this doctor, this treatment, and the other patients I’ve met.  I am both physically and emotionally exhausted at this point, and want to be well rested for my final day of treatment tomorrow. Plus, I fear that too much detail will start to bore my family and friends, and yet I know for readers with RP, there are many more details they want to know.  Please feel free to correspond with me individually for specific questions: jenlandgraf@msn.com.

“Normal”

Ever since I can remember, I’ve wanted to be “normal”.  I’ve wanted to just blend in and not make a spectacle of myself (which is pretty hard to do when you’re running into poles and such.) I’ve literally pictured what my life would look like if I was “normal”, and by normal, I of course mean perfectly-sighted.  I would live out in the country– or maybe I wouldn’t– but I’d at least have the choice to live in the boonies because the “normal me” could drive.  I’d have some job that required a lot of driving– like a pharmaceutical rep– or maybe I wouldn’t– but at least I’d be able to choose a career that involves driving.  I’d play beach volleyball– or maybe I wouldn’t– but at least it’d be an option on a hot, summer day.  You catch my drift;  “normal me” has a lot of options.The funny thing is that most of my “normal me” fantasies don’t envision my life all that different from what it is now– I’d still be married to the same amazing man, have the same sweet children, the same supportive friends, live in a similar house with a similar career path, but I’d be a much “better me”.  I’d look better (because I’d be able to do my makeup better if i could see it more clearly, of course!), act funnier and wittie (because I’d see funny things all around me), be a more-together and fun mom (wouldn’t lose a thing if I could see!), be more outgoing, athletic, involved…… I’d just be me with a little boost.Okay, so “normal me” is beginning to just sound like “perfect me”.  Definitely not saying I would be perfect, but I really can’t help but think I’d be BETTER.  I know that most people have their “thing” that makes them feel abnormal– the family they grew up in (probably half of America for that one), some physical trait that they don’t like about their face or body, some secret about their past, some act that they wish they hadn’t done or hadn’t been done to them…… there are probably very few people who would say they feel “normal”, whatever that word really even means.

But if so many people don’t fit into being “normal”, why do I sometimes feel like I am the only one who sticks out as “not normal”?  And if I really do enjoy most aspects of my life, why do I daydream about changing it?  Let me re-phrase that:  why do WE daydream about changing it?  Based on many of the RP chatrooms I’ve visited, I know that this is something we all struggle with, and I don’t think daydreaming about being perfectly sighted is necessarily unhealthy.  But I do think that we should pay attention to how we view ourselves and the vocabulary that goes along with those views, especially the “n” word.