No Barriers 2019

Another No Barriers Summit under my belt!  (For a recap of previous Summits, click here or here.)

Last month, Brook and I traveled to Lake Tahoe to join my favorite group of people for a weekend of inspiration and adventure. The last time we made the cross-country journey, we had five kids in tow, so this time, our day of flying seemed easy and short. We made it to the Squaw Creek Resort, had a quick dinner, and turned in early since we knew we would need every bit of energy over the next few days.

The next morning came quickly, a California sunny sky with a cool mountain breeze. Mornings don't get better than this.

After greeting some old friends and meeting a few new ones, we set out on our first adventure of the weekend — an “easy” four-mile hike. Four miles up and down, over and around on a rolling and hilly trail may seem easy to some; and five years ago, I would have actually been bored during this half-day jaunt. But on this chilly June morning, I was admittedly a bit intimidated by the distance to come and downright scared of all the roots and rocks underfoot that threatened to trip me and throw me face-first into the dirt.

Then I looked around and was comforted to see what we at No Barriers call a rope team — a physical support group of sorts who is willing, able and eager to help you through any feat. A good rope team will push, pull, protect, catch, or carry you through any barrier. I knew in that moment that, with them, I could do this!

As we set off, someone tossed me a hiking stick, about which I had conflicting thoughts…

First: “Do I look like I need a stick to help me up that measly, little hill over there?”

Second: “Yeah, well, maybe I do.”

Swallowing a tiny bit of pride, I smiled and accepted it, “Thanks.”

And so, we were off. All of us. Short, tall, skinny, round. All of us were off for a hike.

As young as one year, and as old as “I'll never tell.” All of us.

A handful of amputees. A bunch of folks with all four limbs. All of us.

Some of our limbs didn't “work”— due to strokes, disease, pain, or just plain… because.

But all of us would hike.

A few people in our big rope team were blind. One was deaf.

But together, we would hike. All of us.

We brought wheelchairs, canes, crutches and sticks, and we embarked on our four-mile hike.

All of us.

And hike we did.

I don't know about everyone else, but for me, it was a short four miles. Too short.

Not only did I meet new people, but, at the prompting of the hike leaders, I also had meaningful conversations with them.

We learned about the local flora, not only gorgeous but also life-giving. It was right as I was noting their beauty, however, that we were all given blindfolds to stimulate being vision-impaired … Suddenly, the roots and rocks and fallen branches became monstrous in my mind. What if I fell, got injured, and the rest of my trip was ruined?

But soon Brook was tying a blindfold around my head and gently tugging on my arm. Then it dawned on me. My rope team! I had nearly forgotten! (And isn't that always the way?). On the hike, like in my life, Brook was my partner; and I'm so grateful to have him on my rope team. He led me down a large hill and even over a tiny stream, announcing each rock, its size, and how best to avoid it. He also gently pulled me along — otherwise we may still be on that mountain! It was nerve -wracking to not know what was coming next, where a good foothold might be, or how steep the next step would be; these fears are only exacerbated fire me because I have no sense of touch on my prosthetic feet. And it was not lost on me that I was taking the easy way out of the exercise by choosing my “trust partner “ to be the one person in this world who I trust the most.

We switched partners, and it was with my eyes wide open that I was made fully aware of all the folks guiding and encouraging each other. Almost back to our busses now, I looked back up the hill and noticed the last few hikers and their partners, working to communicate, foraging their best paths, and encouraging with positivity. If only I could bring that spirit back to Charlotte, back to the real world…

Luckily, we did bring it back to our hotel, because next up was kayaking! We enjoyed a beautiful afternoon rowing on Lake Tahoe, where we could see straight to the bottom through sixty feet of crystal clear blue water. I had tried kayaking a few years ago at the Summit, but it hadn't worked so well because I had to be tethered to the oar, and the tether was, at best, awkward, and, at worst, dangerous. This year, they'd improved the design and had velcroed the oar to my arms, making things work so well that we could travel that much faster along the water! The adventure only grew when dark clouds suddenly rolled in, long bolts of lightning decorated the sky, and rough waters forced us to shore earlier than planned. 

The next morning, I had two hours of instruction, practice and competition climbing the rock wall - and I have to brag that I rang the bell at the top of the tower four different times! Who knows, this could be my next sport? But there is a clear differentiating point between the way I might have climbed before my illness and how I climb today. Before I became sick, my mindset would have been to beat the other climber to the top. Nowadays my main goal is for BOTH of us to reach the top! I've learned that, when we all reach the peak, we all peak!

In addition to participating in the adventure activities , Brook and I were inspired and entertained from sunrise until way past our East Coast bedtime for five days straight. We heard seven speakers, each one better than the last. We viewed two documentary films on giant screens under the stars. Then we were introduced to the Magic Giants, a folksy and fun rock band that (though new to us) is hugely popular on the West Coast. We even got treated like VIPs when Brook and I went backstage to meet the band mended! In short, The No Barriers Summit of 2019 was an entertainment hit!

Back when I first learned about No Barriers and its world-famous Summit, my reason for interest was to become a speaker. With stars in my eyes, I'd emailed their event planner to apply. We exchanged several emails; and she let me down easily but encouraged me with constructive tips, invited me to attend the Summit, and then even walked me through the process of applying for my whole family to become scholarship recipients. And the rest is history!  Moments before I spoke at this (the 2019) Summit, I got to meet, thank, and HUG the event planner who first convinced me to attend.

At this, my third Summit, I finally got to claim my dream of being a mainstage speaker! I got to share my experience of No Barriers with a slew of folks who needed encouragement to join (or rejoin) the workforce. My specific task in speaking was to not only introduce myself and my story but also to reframe disabilities in the world of work.

Instead of thinking about what people with disabilities CAN'T do; I spoke about the need to focus on what we can BRING to an organization! Instead of dreading how they will ever meet the quota for inclusion, employers should celebrate in hiring people with disabilities for all they can bring to an organization - determination, creativity, and compassion, to hand just a few. I  used this platform to persuade people of all abilities that including people with disabilities in their organizations can increase morale, motivation, and their bottom line. Pretty cool, right? 

I've written in previous blog posts of how much I enjoy being on stage, holding a microphone, and spreading my story of hope and resilience. My talk in Tahoe was no different, except that it was even more fulfilling because I got to share the stage with a new friend Kathy Martinez (pictured below). 

Kathy is a top executive at Wells-Fargo in San Francisco who has been charged with making Wells an organization that is attractive to people with disabilities and where people with disabilities can easily succeed. In a similar way, she made it her job to make me, a disabled woman, shine on stage. That she did. (And in one of my favorite No Barriers photos below, I tried to return the favor - LOL).

Kathy is fun, she's funny, and she put me at ease right away. She asked good questions and allowed them to flow naturally. Kathy "got" so many of my fears, frustrations, and failures but also shared in the increased rewards I feel when I surmount struggles in order to succeed in this world of able bodies. You see, Kathy understands. She has a disability herself: Kathy is blind. 

This doesn't sound like the typical bus trip for the elderly or disabled, does it? Well, it's not. As I've learned over the past three years, the No Barriers Summit is for people who aren't defined by physical abilities. It is for those of us who truly believe that "What is within you is stronger than what is in your way."

At the No Barriers Summits, every person I meet is more inspiring than the last. In fact, Brook made the comment one day that he was feeling like a second class citizen and sort of wished he was disabled too! My friends at No Barriers inspire me to keep reaching and to keep achieving more and more. One night while at dinner in Tahoe (without kids, hooray!), Brook and I decided that I need to step up my game if I'm going to keep up with the group! It didn't take long to decide on my next goal… So… (Drum rolls?) My goal for this year is to participate in Cycle to the Sea— a local charity event where I will bike 180 miles over three days — from Charlotte to Myrtle Beach— in April of 2020. Watch out Myrtle Beach, here I come!

II am so grateful to many who have mentored and motivated me over the past few years, but No Barriers has exceeded any other in providing the biggest, most supportive community as well as the largest number of adaptive activities and sports. If you are ever feeling philanthropic and have any amount of money to spare, I highly recommend donating to No Barriers, USA. And if you are ever in a rut, need a bit of inspiration or are starved for motivation, let me know. I'd love for you to join me at a future Summit. You won't be sorry.

I Am A Cyclist

"It's just like riding a bike!" According to the old saying, riding a bike is supposed to come back easily, even when it's been years since your last ride.

However, these little maxims aren't necessarily true: babies generally don't sleep well; and cats don't always land on their feet. So I was cautiously optimistic that cycling could become my new sport of choice, even as an amputee...

Last weekend I had the opportunity to give it a whirl! I attended a "First Cycling Clinic" in Greenville, South Carolina that was hosted by OPAF (Orthotic and Prosthetic Activities Foundation).

In a recent blog post, I mentioned this fantastic organization that provides amputees with opportunities to try athletic activities for the "first" time. It was with OPAF that I had my first experience in the water; now, they put me (and about 30 other amputees) on wheels!

There was a time when I thought that I would never ride a bike again – I assumed that it would be too difficult (and scary) to balance on wheels. And how could I grip a hand brake without hands? Obviously, fall could mean a serious injury.

But, with the adaptations provided by The Roger C. Peace Rehabilitation Hospital, I wasn't required to balance, and falls were far less likely. So biking wasn't nearly as scary as the other activities I've tried since losing my hands and feet – not as frightening as walking, running, teaching step aerobics and weight training, or coming down a staircase. And not life-threatening like swimming or skiing!

The folks with OPAF had several different kinds of bikes that I could try – tricycles, hand cycles, and recumbent bikes. You should have seen some of their contraptions, all invented to allow people to experience the exhilarating freedom of riding a bike.

After talking and brainstorming about my unique challenges, we decided that I should try a recumbent bicycle. This arrangement allowed me to pedal without forcing my right knee to   bend more than 90 degrees.

Wearing all my prosthetics, I held the handlebars that were twisted 180 degrees so that I could push down on the hand brakes, instead of having to squeeze them.

I sat in the hammock-like seat, strapped my feet in the pedals, and off I went! Before I knew it, I was riding my bike around the block. It was so comfortable and even relaxing. Honestly, it felt more like lounging in a LazyBoy than exercising.

Cycling was easy! Easy as pie! Maybe that will be my next athletic endeavor!

To be continued...

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The Shallow End

In the blog post that I wrote last week, I described the sheer fear I felt in those first few moments of swimming again.

Without hands or feet, and without any prosthetics to help me, I didn't know if or how I'd keep my head above water, even in the shallow end. But I faced another, possibly greater fear before I even went near the water.

I'm embarrassed to mention this particular fear. But if I am going to be honest on this blog, I have to say it. And there's no flowery way to put it. No talking around it.

I was simply afraid of unveiling my broken body. I didn't want to undress and remove my prosthetics because I was deathly afraid of allowing anyone to see just how pitiful and helpless I look.

My prosthetics normally hide the "stubs" on the ends of my limbs; and, without them, I am naked and vulnerable.

Before tackling this fear, I could only imagine what I would look like, sitting at the edge of the pool: a little, helpless, "handicapped" girl, that someone had possibly left behind.

Being a (relatively) new amputee, I am often shocked myself when I see my own body.

So it is understandable that strangers give me that second glance...

But I do notice it.

I see the stares.

They are not mean-spirited stares. Yet, they are still unsettling. And I certainly don't want to attract more of them. Facing the world without something covering my wounds invites even more stares!

Kids, in particular, stare at me. Or maybe they are just less practiced at hiding their reactions - Most times, children are truly just curious...Who is that? What is that? Could it hurt me? Could it happen to me? Could it happen to my mom? As they look more closely, they often become fearful. They hide behind their moms. Anyone who knows how much I love kids (and not just my own), would tell you just how devastating this is to me.

Yet, most of my hesitation about swimming is on an embarrassingly superficial and vain level. Seeing my body and its challenges reminds me that achieving my "idea" of physical beauty is now even less of a possibility. I have a physical deformity, after all. I am not even whole! And I have many, many inexplicable scars. (I've never asked the doctors how some of them appeared because I truly don't want to know.)

I could never look beautiful. Or sexy. Or strong.

It certainly gives a new layer to dreading bathing suit season.

To think that I used to worry about how I looked in a bikini, or if I should even wear one...

Before buying a new (always black) bathing suit, I'd look in the mirror with angst. I'd examine the circumference of my thighs. I'd pinch the flab on my tummy. And I'd lament my "runner's chest," flattened with each mile.

I was at the gym nearly every day, trying to mold my body into some unnaturally tight and thin figure, without one ounce of fat or flubber. I did pushups and lifted many weights to build my chest, biceps, and shoulders. And the sit-ups. Oh, the sit-ups.

It all seems so ridiculous now.

So silly.

It does make me realize this: Everybody has something. Everybody has some physical characteristic that causes them shame. Some thing that weighs them down. Too fat. Too thin. Too short. Too long.

I guess my thing now is "too robotic," "too fake." (Although one could argue that more of my body is real than those Sports Illustrated Swimsuit models'...)

Unfortunately, we all hold ourselves to the ridiculous ideals that we see in the media. We spend so much time and energy trying to change ourselves. It is so "self-" centered; imagine if we spent this same time and energy on others - women could save the world! Still, I think we all do it, to some degree.

I used to keep my "arms" on while I was working out at the Y. I would use them to disguise my own arms, even though they'd make me uncomfortably hot. Now I just take them off. I know that some people will stare, regardless of what I do. They can just as well stare at my prosthetics as at my stumps. So I may as well be comfortable while they stare.

For me to wear a bathing suit now is a bold and courageous move. It says, "Yes, I am different. I am an amputee. So, stare all you want. I'll be over here enjoying my life."

Once I slip in to the pool, I realize how strong and amazing my body really is. I can still float. I can still swim, lap after lap. I can still enjoy life.

And that is beautiful.

Being beautiful is so much more important than looking beautiful.

So, what is the one fear that holds you back from doing something you love? That keeps you from enjoying your life? How can you "slip in to the pool" in your life?

For when you do, I think you'll find strong, amazing, beautiful things.

Independence

I recently traveled to Durango, Colorado all by myself for an entire week! The Adaptive Sports Association awarded me with a skiing scholarship that included an all-expense paid trip, and I thoroughly enjoyed every minute of it. Many people couldn't believe that, as a triple amputee, I had the courage to ski. (See previous post about my trip here).

Though skiing took courage, the scarier part of my journey was leaving the comforts of my home and family, as well as the assistance of a nurse or an adult who was quite close to me (mostly Brook, but sometimes a friend or family member).

Since my amputations, I have traveled to Ohio, and even to The Bahamas. I've gone through airport security gates, and I even swam with dolphins!

But I have never stayed at home alone for any length of time, nor had I traveled anywhere without an accompanying family member.

For two years now, I have almost completely depended on my dear husband Brook. His caring smile and twinkling green eyes were the ones that greeted me when I came out of the coma. After 100 days in six different hospitals, his were the strong arms that retrieved me from our car, carried me across our threshold, and wheeled me around our house.

Brook learned to gently bathe me (rather than scrub me like a car), and to slowly detangle and brush my hair - even and especially when it fell out in clumps from the sheer trauma that my body endured. He even blow-dries and styles my hair these days, and he does a surprisingly good job, I must admit!

Brook has prepared most of my meals, and he learned to feed me only the smallest of bites. 

Initially averse to blood, guts, and gore; Brook has patiently changed all of my bandages and could now pass for a skilled wound nurse. He has accompanied me at doctor's appointments, and he paced outside the surgical suites during all six of my amputation and revision surgeries. 

Brook still puts on my prosthetic leg each morning, helps me dress, and assists with my shower. 

Brook is my constant source of emotional support, encouragement, and companionship. Those that were present for our wedding day back in 2001 can vouch for us - we have always had a very strong and rare love. 

And it probably comes as no surprise that, since my illness, we appreciate one another like never before.

So, it follows that leaving Brook behind when I went skiing was, at best, difficult and, at its worst, incredibly scary. 

There were only three weeks between the day I was awarded the skiing scholarship and the day my plane departed. That small window of time worked in my favor, as more time to consider would have meant more time to reconsider.

The night before my trip, I did start to doubt my decision to go. My thoughts began to spiral down the hole of "what if's."

What if I can't get my (prosthetic) leg on each morning? What if I can't get my ski pants on?
What if I can't get my ski pants off? What if my hands get snow on them and break? What if I can't get in the shower? How would I even turn on the shower? What if I can't get out? What if I had "over-sold" myself in the application? What if I had exaggerated my independence?

Several other things were contributing to my self-doubt as well: 

First - Even when I had hands and feet, I was not a risk taker. Nor would I be categorized as adventurous or spontaneous. I have often joked that I could be spontaneous next Tuesday from 2-3, if only someone would give me the options ahead of time.

I went to a college that was only three hours away. A very "safe" move. Then I moved back to Charlotte and lived here for a couple of years before enrolling in a graduate school that was located less than two hours away. Not risky.

Today, I live only fifteen minutes from the house where I grew up. I live right near my family, and I depend on them greatly.

Second - While I am very talkative, I am also quite reserved in new situations (I have always been too scared to live in new places); and I didn't know one person in Colorado.

Third - Because I became friends with him on FaceBook, I have never actually met the amputee who recommended ASA Durango. I scoured their website, and I could not find a prosthetist or physical therapist on staff. Then I asked my expert friends at Hanger Clinic here in Charlotte, as well as at Active Charlotte Alliance; and no one could officially vouch for them.

Let's review.

 I was supposed to be leaving my home and my peeps

+

 I was flying across the country

+

 I wasn't sure that I'd be able to safely shower when I got there

+

 I did not know anyone

+

 I did not know anyone who knew anyone there

 =

 Big RISK.

Especially when it is considered that I am not a risk taker...

But accomplishments are bigger when the challenge is great. And one definition of courage is to be afraid and do it anyway. Sounds like a motivational poster with a picture of a big mountain, huh? So, I jumped onto that plane.

And here is where I landed.

And it was a risk well worth taking. My host mom put my (prosthetic) leg on every morning, and she helped me get on my ski pants and boots as well. But, other than that; I took care of things, as my three-year-old would say, "all by myself."

I picked up my suitcases and put them on the scale at the airport check-in desk. I even grabbed them off the baggage claim turnstile when we got to Colorado. I ran and caught my connecting flight. I dug in my bag and found my boarding pass when it was time. I opened, refilled, and closed my own water bottle (after the security checkpoint) so that I was not challenged by the refreshments served on the flights. And I even buckled my own airplane seat belt!

When we got to my host house,

I got my own little self settled in my room. I unzipped my own suitcases (even the cheap one with the broken zipper). I plugged my own chargers into and into their corresponding devices. I plugged in my own hands. Yes, they are battery-powered and need to be plugged into the wall to charge every night. And I negotiated the eating utensils at my host home as if I'd been using them for years.

In case you were wondering...I was able to shower independently (though my hairstyles were atrocious!)

These details are many, and it may seem arduous and monotonous (and silly!) to list them. But these tasks are bragging points in my life. If you had told me two years ago that I would be able to perform them, I would have told you to "stop with the crazy talk." 

So you may think it's impressive that I skied down a mountain, but I am more proud to tell you that I did all the things necessary to get up that mountain.

My 12-year-old son may have said it best: "Mom, I feel like you came home with a newfound self confidence." Or it may have been my prosthetic technician, who told me I was "wearing that ski trip."

6,532 feet. That's the elevation of Durango, Colorado. 

But I gained a whole lot more height.

See Kristan Ski!

A few months ago, my virtual friend Ian Warshak told me about a program in Colorado that helps people with disabilities learn to ski. He said they were accepting applications, and he sent me the website for the Adaptive Sports Association in Durango. This remarkable organization uses athletic pursuits to enrich the lives of those with disabilities while spreading a message of hope and showing the world all that we are ABLE to do. Their mission is right up my alley, huh? 

ASA Durango offers out-of-state scholarships to athletes with disabilities that include an all-expenses paid trip - airfare, lodging, meals, and four days of skiing with a private instructor. Um, yes please!

On a whim, I applied. I had no idea what my chances were, but I figured there were a lot of people in the whole country that would love to go. So I filled out the college-like application, forgot about it, and went about my too-busy life. 

Then, on a Sunday afternoon, I was driving home from running some errands, and I got a phone call that popped up as a Colorado phone number.  I thought, "Who do I know from Colora..." Before I could finish my thought, I remembered my pending application! The super-duper nice woman who was calling said she had a few questions for me! She asked, I answered; and, by the end of our conversation, it was fairly clear that I would be going to Colorado!  

That was two weeks ago, and I am leaving for my big trip tomorrow, Monday January 11th.The quick turnaround really threw me, but it is probably for the best that I not have more time to anticipate and become apprehensive. 

Going somewhere alone, without my husband who takes cares of me, is an adventure all its own! Brook puts my leg on every morning, he buttons my clothes, and he makes my heaven-blessed coffee. What will I do without him? I think I am more scared of the independence than the actual skiing! 

My itinerary is that I will fly straight into Durango, Colorado, and I'll get in right after lunch. I'll use the afternoon and evening to adjust to the time zone and altitude as well as get to know my host family. This husband, wife, and 12 year-old son open their home every year to the program participants, and I can't wait to get to know them. I'll stay with them for five nights. On Tuesday through Friday I will, along with a few other people with disabilities like paralysis and MS, ski from 9 until 4; then I will relax with my new family each night. Then I'll travel home on Saturday to share my experience!

"Excited" doesn't begin to describe my feelings toward my week in the Colorado mountains. This is an adventure that I would never get to explore before my disabilities. And it will be all the more rich, empowering, and memorable because of them.

Check back here for updates and pictures. To be continued...

Back to School

Today I got to have lunch with three of my girls at their elementary school! It was the first time I've done that this year, and we were all very excited. I feel so lucky to be able to do that. For two reasons:

A) I am grateful that I am physically able to do it - to drive to their school and walk down the steps to their cafeteria. There was a time I thought I'd never be able to do that again.

B) I am grateful that I get to stay at home with my children right now, so I am free to visit with them during work hours.

A week or so ago, I picked up the latest edition of inMotion Magazine "The Living Well with Limb Loss Magazine." Stop laughing. I know it's not Cosmo. But this is what I read now. 😜 (btw- I would have chosen a better emoji, but they don't make laughing triple amputees.)

Back to my point. The cover photo on the magazine was of an amputee mommy and her elementary school-aged child. Right up my alley, right? The feature article had tips for amputee parents as their kids head back to school. The Amputee Mommy has one leg amputated below the knee; she recommended wearing pants for the first couple of visits to school so that your child is not labeled the "girl with the disabled mom," and your child's classmates will get to know you a bit before they are shocked by your prostheses.  

So, despite the heat and humidity of North Carolina in September, there I was, walking in to school wearing jeans and a long-sleeved shirt. But it was worth every drop of sweat rolling down my face.  

Now, to be fair, many of the students know me from last year, BUT this was my best school visit yet!  Not one kid asked me what happened to my leg. Or why my hands looked so strange. I did not notice one kid staring at me. I felt almost like a normal mom. SUCCESS! It is funny that, before my amputations, I used to worry about (not) fitting in with the PTO moms at school. I always felt like I was different. Haha. I knew nothing about being different then.

Later today, my husband Brook asked Caroline (our 9-year-old) about my visit. She agreed that no one really noticed or asked about my hands or feet. Brook kept trying to open doors for her to vent about having a disabled mom. But Caroline interrupted him by saying with confidence, "You know what, Dad? I honestly don't care about that. Everyone just sees her as my mom, and everyone knows she's no different."

Well said, Caroline. Well said.

Welcome To My Blog!

Welcome to my blog! My name is Kristan Seaford, and I am a motivational and faith-building speaker, writer, and blogger. I have an interesting, fulfilling, fun, but physically difficult life. I live in Charlotte, NC and have lived here for most of my life. 

I am still recovering from a pretty catastrophic illness, which began in November of 2013. What started out as the flu and strep throat turned into a life-threatening condition called septic shock. An infection in my blood caused my organs to fail, one after another.

After 100 days, a medically-induced coma, six hospitals, and a miracle, I survived. However, the powerful medications and treatments that saved my organs took the blood, oxygen, and nutrients from my limbs. My hands and feet essentially died.

Today I live as a triple amputee, with my remaining foot missing the toes and part of my heel. I am learning to use amazing prosthetics, which are helping me live a fairly "normal" life.  I am able to parent my five children - driving them to their various activities, signing their reading logs, volunteering at their schools, and potty-training the little one. I have even been able to return to teaching group exercise classes at the local YMCA.  

On this blog, I am seeking to chronicle my daily life, educate people about amputations and prosthetics, make people think, and laugh and cry, help people appreciate their gifts, prove to people that those with disabilities can do anything that abled people can, and motivate people of all abilities to reach for their dreams. Here goes!