Enock with his climbing team.

As a person who has been disabled my entire life due to spina bifida, I have found I have a different idea of what being independent means to me. I have a lot more friends who have become disabled due to injury than those who have been born into it. As I have spent time with my friends, I have noticed they seem to be adamant about doing things on their own. They will even struggle to do something when help is nearby and could easily be acquired to make the task much faster and easier.

Don’t get me wrong, I am all for doing everything I can on my own, but I also believe that part of being independent is knowing when you need help. I sometimes wonder if people who are injured and go to rehabilitation are preached to so often about being independent that it becomes ingrained in them that they shouldn’t ask for help, no matter the circumstances. I believe this thinking might hurt as opposed to help people. If someone feels they need to do everything on their own and are unable to ask for help, they may decide not to try something in life just because they can’t quite do it on their own.

I am a member of an adaptive ski race team, and the coaches often push us to be as independent as possible. After all, we are supposed to be high-level athletes if we are competing in a sport. I definitely agree we should try to do things on our own, but I also think sometimes there are instances when getting help is safer and wiser. For example, riding the lift by myself, which I have done and am capable of, seems like a bad idea. If something should happen, I have no one there to assist me. If there isn’t anyone to ride with me, I can do it, but I don’t think it should make me seem less independent if I get assistance.

Another instance happened when I was stopped at the bottom of a hill in my ski through no fault of my own, and I asked for a push to the top to save my shoulders and arms. I knew I would be skiing the rest of the day and the next day and didn’t want to risk wearing my arms out and missing practice time. There was an able-bodied person there to assist, so I took the assistance. I was told I should be able to do it on my own if I am on the race team. I can do it on my own, but I chose not to for the reasons I explained.

When someone is telling me I should be doing everything without assistance, I want to ask them about their own life. Have they done everything on their own, or did they have help to get where they are? Have they never asked for help carrying groceries or taken their car to a mechanic to be fixed? Everyone needs help now and then, and we should all feel empowered to know when and where we need help and when we don’t. It should be our decision to ask or not.

I would not have had some amazing experiences in life without asking for help. I have reached the summit of El Capitan and Washington Column in Yosemite National Park, Cathedral Ledge in New Hampshire, completed marathons in my racing chair, skydived and learned to fly airplanes. Throughout all of these achievements, it has taken tremendous help for me to get to the end goal. I have had friends guide me up rock faces and carry me back from the summit, I went skydiving tandem, I had an instructor teach me to fly and a coach help me train for racing.

I know there is a time and a place for helping and for allowing a person to figure things out. But I believe we should allow the person struggling to make that choice. I have been offered help many times and turned it down because I was doing something I knew I was capable of doing. I have also accepted help when I knew that getting to the end goal was more achievable.

I believe if we all worked together and helped one another, the outcome would be greater than if we all stay individuals and fight the current of life alone. When we all come together with a common goal, great things can be achieved.

My hope is that we can encourage one another to lend a hand when needed, but also have the choice to go our own path when we desire.

I would love to hear others’ views on what independence is to them, and stories of when they got help or when they didn’t need it.

Follow this journey on Go Beyond the Fence.

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2017 is a very exciting year for me, but goodness has it started on a low, having lost an incredibly special member of our family. My Granny recently left this world, aged 90, after a 10-year battle with dementia – she fought a very good fight and is now at peace, no doubt drinking some sherry with Poppa, the love of her life!

As one does after losing someone special, I have spent a lot of this week reflecting on Granny – the wonderful person she was, the good times we had and the things she taught me growing up. The wisdom she shared with me is incredibly pertinent for the stage of life I find myself in, and there is one particular nugget I wanted to share.

“Life is not a competition, Emily. We all come into and leave the world in the same way. What matters is how well you live your life and the difference you make in your corner of it.”

Throughout my life, Granny has acted as a sounding board for everyone in my family. A gentle lady with a backbone of steel, she would tell you things exactly as they were. There was no mincing of words! I remember a conversation I had with her many years ago (although I can’t remember the original context) where she said that life was not a competition and that regardless of what a person does or doesn’t achieve in life, we all come into and leave the world in the same way. We are all equals.

This nugget of wisdom is particularly relevant for me right now as I have recently made what feels like a very big decision. In a week’s time, I will be going part-time at work. Now dropping down to four days may seem inconsequential to many people (and even desirable for a large number of us!) but it is a decision I found very hard to make. Having spent a large proportion of my life trying to do the best and be the best, in a way “proving” to people that I could hold my own in mainstream life as a disabled person, admitting that I could no longer keep up this pace felt like failure. But as Granny said once, “The only person who loses when you compare yourself is you. One sees the best of the other person and compares it with the worst of yourself.” What a wise woman she was.

If Granny had been able to talk in the last few years, I know what she would’ve said in response to my worrying. She would’ve told me to stop being so silly! Admitting that I need to slow down, step back and take care of myself is not “failure,” it’s choosing the type of life I want to live, particularly given the specific set of difficulties I face. It’s listening to my body and doing what is best for me and for my family. It in no way represents defeat.

If you speak to a number of different people including my doctors, it is pretty miraculous that I’ve survived three years of full time work without any huge dramas. If you don’t count multiple pressure ulcers because of time on my feet, feeling chronically tired, severe pain, multiple kidney infections and a pseudo-aneurysm as huge dramas, that is!

Granny would’ve said that making this decision is wise. It gives me back my work-life balance and means I can feel like I’m doing things well, both at work and at home. Rather than putting 100 percent into my professional work and feeling sub-par in my home life, I will be able to find the all-elusive balance and enjoy the excitement that is my personal life in 2017 as well as being a great Speech and Language Therapist. After all, life is about being the best person you can be, in all that you do.

I must also point out how lucky I am to have an incredible family and an amazing fiancé who have supported me in this decision. My fiancé has not once complained about the financial challenge this will pose for us, but has instead encouraged me, stating that a happy and healthy Emily is far more important than any wage. He told me that while it feels I’ve lost the full time work “battle,” it does not mean I’ve lost the war against the difficulties my disability poses on a daily basis.

This decision is about accepting myself the way I am and doing what is right for me. After all, life is not a competition. I don’t have to keep up with the Joneses. I just have to do my best and be the best version of myself that I can be. Although 2017 will be tinged with sadness, I can’t help but celebrate all that Granny taught me and all the next year holds. I’m eight months from becoming a wife — and that is certainly something to celebrate!

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Thinkstock photo via Wavebreak Media.

As a person living with spina bifida, challenge is part of life.  Although people may see me in a wheelchair and think I have it harder than others, I think everyone has challenges in life. It’s how we face them that really matters. I could just as easily have said “I don’t want to deal with this” and stayed home. Instead, I choose to face challenges and even find challenges to face.

I suppose my affinity for challenge really started when I met my physical education teacher, Bob Dyer, on my first day of junior high school. Each class he would push me to try things beyond what I thought possible. He became a driving force in my life, and with each challenge he presented I said “yes” and met it head on. He never expected anything less of me.

One day he challenged me to try the pegboard, which is basically a flat wood panel with holes in it and pegs that fit in the holes. The idea is to “walk” around the board only using the pegs to go from one hole to another. He told me to go for three times around the board. Of course, me being who I am, I said I will do eight. I still hold the record for the most times around the board to this day. It was a really cool feeling to have my name up on the record board, especially being the only wheelchair user in the school.

We also used the gymnastics rings in class, and one day he suggested I try doing the iron cross. This move consists of putting my arms out straight while hanging from the rings. I managed to do it, but my shoulders were on fire. Meeting that challenge showed me that I really was capable of doing things beyond what I thought possible.

His first big idea outside of physical education class was to take me downhill skiing. The first year we went to Maine Handicapped Skiing, which is now known as Maine Adaptive Sports and Recreation. I met Jay Germaine and Andy Barlow, who are both sit skiers.  They were my instructors that week, and introduced me to the mono ski. I had a very frustrating week. I started out on the magic carpet which is basically a conveyor belt that allows a person to take very short practice runs and then ride up again.

I remember not liking Bob much that week when I was falling and eating snow. As with all my challenges, though, I faced it head-on and tried my hardest to put all the instructions I was given into practice. By the end of the week, I was actually riding the lift and making turns. I have now been skiing over 20 years and just bought my own mono ski.

At the age of 15, Bob got me into wheelchair racing. I got my first racing chair with the help of a sponsor and started pushing myself 20 miles a day, 7 days a week as the weather allowed. I would come home after school in the spring and throw down some food, jump in my chair and head off. I would push myself the 10 miles back to school and then home again. There was a hill about 5 miles into the trip that was about a mile long and very steep. I lived for pushing this hill because I knew the thrill ride I would get on the way back. On my way back, I would sit at the top of the hill, look both ways to see if the coast was clear, and then push for all I was worth. I managed to get up to 56 miles per hour the first time, and when I got to the bottom my arms were shaking. I was scared but exhilarated at the same time. After that I was hooked. I couldn’t wait to do that hill every day.

Fast forward to recent history. Over the past few years, I have increased my level of challenge.  I began rock climbing and just completed my first ascent of El Capitan in Yosemite National Park. I don’t want to give too much away about that experience, as there is a movie coming out very soon that will illustrate it perfectly. Let me just say that when most people hear I did 4000 pull-ups, they focus on that as being the hard part.

For a person with a disability like mine, the hard part of rock climbing is daily living activities. Performing tasks such as getting dressed or using the bathroom in a space that is about 4 feet by 8 feet is much harder when you are unable to stand up. You are using up most of the space with your body just sitting on the porta-ledge, so everything requires much more planning and effort. When the movie is released, everyone will have the chance to see what the experience was like.

I guess you could say I am happier and more alive when I am facing a challenge. It is like an energy boost comes over me and I push myself to overcome whatever I am facing. I said “yes” to each challenge over my life and it has given me a sense of accomplishment and satisfaction each time.I would encourage you to say yes to challenges and face them as I have. I truly believe you will find out things about yourself you never thought possible, and it will enrich your life more than anything else.

Follow this journey on Go Beyond the Fence.

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I was born with spina bifida, which left me unable to move my legs. I have used a wheelchair as my mode of transportation my whole life. I lived in the woods in northern Maine, so I spent a lot of my growing-up years in the outdoors, either hunting and fishing with my dad or just being in the woods around our home.

When I entered junior high, I met a man who would influence the rest of my life  — my Phys. Ed. teacher Bob Dyer. He was the first person to really push me to go beyond the fence and test my limits. One of the first things he said to me was “How many push-ups can you do?” He suggested 20, so I did 40. I think that was my first mistake, and also the best thing I could have done. I set the bar a little too high, and he expected that from me from then on out. He made sure I was involved in as many activities as possible, even taking a week each year to take me skiing at Maine Adaptive Sports and Recreation.

It was definitely Mr. Dyer who started me on a life of adventure. About 5 years ago, when I would see a friend of mine, Nick Hall, post pictures of his adventures online, I started to think about the possibilities of bigger adventures. He was a ranger at Mt. Rainier, and unfortunately lost his life while performing his duties during a rescue mission. After this tragic event, I decided I wanted to try to find a way to be able to witness the views he had seen atop Rainier for myself.

I knew that Mark Wellman had been the first paraplegic to climb El Capitan in 1989, but I hadn’t seen much about climbing since reading about his attempt. I decided to do some research and found an organization called Paradox Sports. Paradox Sports is an organization that empowers people of all abilities to rock and ice climb, among other sports. I noticed they were doing a rock climbing event in the Shawagunk Mountains that October, and I signed up.

During the Gunks event I met a bunch of amazing like-minded adventuresome people, whose only mission was to make it possible for other people to enjoy adventure too. I immediately knew this was the group for me. I was able to learn a lot of techniques for sit climbing that weekend from Sean O’ Neill, an accomplished sit climber, who is now a great friend. I also gained a wealth of knowledge from the able-bodied guides who helped put on the event, including Nate McKenzie and Gary Dunn. They both continue to push and inspire me to greater endeavors. I found out that weekend that Sean lived an hour from me, and have been learning from him ever since. I have been back to the Gunks for this event the last 3 years and will be attending again this year.

I have done one other climb with the help of Nate McKenzie, Betsy Smith and Alan Kline. They enabled me to climb Book of Solemnity route on Cathedral Ledge in North Conway, NH by setting ropes and managing all the safety for me while I did pull up after pull up. It took most of the day but I eventually reached the top of my first multi pitch climb.

That climb really sealed my passion for the challenge of rock climbing. Looking up at the summit and down at where I had been started a fire in me that made me crave challenge. I find I am most happy when struggling to push myself to a goal that might seem unattainable, but when attained gives me the greatest sense of accomplishment of anything I have ever done.

Follow this journey on Go Beyond the Fence.

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“If the shoe fits, wear it.”

That’s not the sound of me throwing around cliched moral judgments. That’s the sound of a mom who has spent way too much time looking for a holiday party shoe that will fit her daughter’s foot.

Shoe shopping can be difficult for people with disabilities such as spina bifida, spinal cord injury, or cerebral palsy. Their feet are often clubbed, different sizes from each other, or just smaller than the average size for someone their age.

Some people also wear Ankle Foot Orthotics (AFOs) that alter the shape of their feet even more. These braces usually only come with one pair of standard, medical-equipment-brand tennis shoes that cost as much as a pair of high-profile, fashionable kicks. That means you’re on your own to find any other shoe style you might need.

Easier said than done.

Features such as side zippers, Velcro, and wide tongues increase your chances of making a shoe work. But when is the last time you saw a dress shoe with Velcro that wasn’t for a preschooler? Exactly.

From poor fit to lack of fashion, these factors make it difficult to find footwear that a middle school girl with spina bifida can squeeze onto her tootsies, much less something she likes. Apparently, you can only pull off the sporty, wearing-Converse-with-a-dress-look in certain situations.

Not for Christmas. Not for New Year’s.

Usually, shoe shopping in person is a must. None of this ordering online stuff. “Oh, I wear I size 6 — click!” Ha. When you have a disability that affects your feet, you could wear a size 6. Or a size 3. Or a size 8. It all depends on the shape of the shoe, and how it pulls over your foot.

Girls often want a little glitz. They want a little sparkle. They want a little daintiness. In the absence of all that, they’ll take a nice looking boot.

But glitz, sparkle, and daintiness are hard to find for irregularly-shaped feet.

That’s how, one day, I came to the conclusion that Cinderella must have had spina bifida. Think about it. The prince tried that tiny, sparkly glass slipper on every eligible maiden, and it didn’t fit. It was custom-made for a foot that was so unique, it was like no other in the kingdom.

And I can promise you, after seeing my daughter sit in the shoe store trying on slipper after slipper, that her foot is like no one else’s in the kingdom either.

After many trips like that, I started to dread holiday shoe shopping. But this year, we had an amazing, Cinderella-esque experience.

Earlier in the fall, my daughter found a pair of boots on Amazon. They were trendy, black suede ankle boots with a little zipper on the side. She wanted to order them with her own money.

“No,” I said. This will never work. They won’t fit. We will end up having to send them back.”

“But they have a zipper.”

“They do have a zipper.”

Maybe they would open up far enough to get her foot inside. The side zipper was the deciding factor. That, and the fact I had a pair of emergency ballet flats tucked away in case we had a dress shoe crisis with no time to spare.

After waiting a long couple of weeks for our not-available-for-two-day-shipping shoes, the day finally came for them to arrive in the mail. I braced myself for disappointment.

But as if a fairy godmother had zapped those beauties into existence, they slid onto her feet perfectly. It was an unrivaled shoe shopping experience.

In the Cinderella story, when the clock struck midnight and everything else vanished, the shoes remained. In our case, this is holding true as well. Her shoes survived the fall in beautiful shape and saved us from the winter holiday shopping nightmare.

The boots are going to make it through the parties and church services for this year — and I hope through the next. With clubfoot and spina bifida, the foot often doesn’t grow very quickly. So the same pair of shoes, when taken good care of, can last for quite a while.

And until then, my daughter and I are going to enjoy not having to look for footwear alternatives. Because if the shoe still fits, wear it!

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Carla Lohr is an adult living with spina bifida, as well as a mother to a young man with spina bifida. She’s an online professional who has worked at several websites, including The Mighty, and volunteered at Shriner’s Hospital for Children facilitating a support group for parents of children with special needs.

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