Daddy, what happened to her leg?

The number one question I overhear when out in public is “Mommy (or Daddy), what happened to her leg?” When I overhear this I usually look at the kid, smile, and ask them if they’d like to come ask me any questions about my robot leg and point out to them how cool it is. This is usually met by a shocked look on the child’s face because they aren’t yet old enough to realize that other people aside from the person they are talking directly to can hear what they’re saying. Some kids are brave and take the opportunity to come ask me questions and touch my robot legs, but others are shy about it. What I want to encourage is that if faced with a situation where a person your child is asking about offers the chance to ask questions, strongly encourage your child to do so.

This exact situation happened to me recently while waiting in the Charlotte airport. I was reading a book and just happened to overhear a little girl (probably around 3 or 4 years old) sitting across the aisle ask her dad what happened to my leg. I took the opportunity to do what I always do – look at her, smile, and ask if she wanted to ask me any questions. She immediately got shy and tried to retreat behind her dad, but he coaxed her into coming over so she could get a closer look at my leg and ask questions. I explained to her that the leg I was born with didn’t work the way it should and so they had given me a robot leg to allow me to do all the things I wanted to do, like running, biking, and riding horses. I showed her the recent espnW article I was featured in, but I honestly think she was more interested in my leg’s sparkles than my recent “fame.” After a few minutes she was satisfied and went back to her seat across the aisle. Due to delays, we sat in that airport at least another hour and a half, and she had totally lost interest in my leg. I would glance over ever now and then and she was completely enthralled with her dad, mom, brothers, or toys, paying absolutely no attention to me.

This, in my mind, is awesome, and is the exact reason I want to encourage parents to get your children to ask questions when the person initiates that opportunity rather than allowing them to shy away. I have had very different situations when parents allow their child to hide behind them after I ask if they would like to ask me any questions and that child will continue to stare and wonder what really happened. However, since this little girl’s dad brought her over to me, I was able to shape the narrative and tell her what happened to my leg in an honest and understandable way. I normalized my situation for her and helped her understand it wasn’t something she should be afraid of or avoid asking questions about. Thus, rather than spending an hour and a half sneaking glances at my leg and wondering, she had an answer and was able to move on with her life carrying this new knowledge that it’s okay to look different and ask questions when someone gives you that opportunity.

P.S.  I allowed my niece and nephew to draw pictures all over my residual limb during our recent vacation and they thought my leg was pretty much the coolest thing ever after that.  It my mind, it’s all about finding a way to connect with people so they can be as comfortable about it as you are (and an important piece of that is that you probably have figure out a way to find your comfort with it first).

emily's niece and nephew drawing with markers on her legs. her prosthesis is on the floor in the background

Flying with Prosthetic Legs

As I write this, I’m sitting on a plane flying home after a lovely week with family on Tybee Island for Christmas. This trip required me to go through the regular flying fun – packing, security, boarding the plane, storing luggage, transferring planes (with little time in one instance), and then doing it all again on the way back. This isn’t exactly the definition of fun for anyone, but flying with a prosthesis can create additional challenges. I’m going to try to break down these challenges and then share my personal strategies for streamlining and making the whole experience a little easier for myself.
The first challenge is that I have to figure out how to pack my legs. When I travel, I wear my everyday leg and pretty much always also take my house leg and my running leg (my bike leg often gets left at home unless I’m going to a race or triathlon camp and also taking my own bike with me because I can ride rental bikes with flat pedals using my everyday leg). I have tried different methods and landed on a system that works for me. I prefer packing in a small carry-on suitcase, which means my legs will not fit in the bag I use for my clothes because they are too tall. I also don’t want to check my legs because I’m not willing to take the risk of them getting lost for any amount of time, so packing them in a bigger bag with my clothes isn’t really a great option either (I have done this and was anxious the whole time & then they were delayed on arrival – ugh!). What I’ve figured out to be the best solution is that I have a separate “leg bag” (made by my friend Pam) that I use to haul my legs around. Airlines aren’t allowed to charge for transporting medical equipment, nor does it count as a carry-on, so I basically get an extra piece of luggage that I can take on the plane with me. When I’m walking around the airport, this bag sits on top of my roller suitcase and I’m able to wrap the handle of the bag around the handle of the suitcase so it’s easier to lug the extra weight around. This also allows me to move quickly through the airport when transferring planes and trying not to miss flights.

Emily walking at the airport with a backpack on her back and her rolling suitcase with her bag of legs attached on top
Another fun challenge when flying is going through security. The TSA agents are not allowed to ask a person to remove their prosthesis, and although I have done it voluntarily in the past, that method doesn’t end up being faster than what I’m doing now. They also can’t make you take the shoe off your prosthesis because that can throw off a person’s alignment and create a fall risk. They fairly consistently swab my prosthesis, both shoes, and hands after I go through the machine to test for gunpowder, etc., so they usually just let me keep my shoes on when I go through the machine (once they realize I’m wearing a prosthesis). I am always friendly with the agents, but if it seems as though I’m the first amputee they’ve had come through their line I explain the process of testing my hands, shoes, and prosthesis to them so we can move the process along a little faster. This isn’t usually an issue in a busy airport like Denver, but I sometimes run into it when flying out of a smaller airport (like the one in Savannah this morning). On other thing to note is that I also wear clothes that show my prosthesis as that seems to make things go more smoothly. As an aside and relevant to non-amputees as well, I also don’t wear anything that requires a belt, wear minimum jewelry, and I make sure my liquids are on the top of my bag so they’re easy to pull out of my bag for security – these are strategies that have also allowed me to get through the line with more ease.
Another additional potential challenge is overhead bin space. If the flight is full (when are they not these days) and I’m in a late boarding group, I will sometimes utilize the pre-boarding option so I can make sure I will have space in the overhead bin. This again goes to me not wanting to risk my legs being lost or delayed in transit. That said, I will also often offer to check my roller bag with my clothes and other items if they are seeking volunteers to check their bags at the gate because although I would be sad if my clothes (especially my Skirt Sports) were lost or delayed, those are much more easily replaceable than my legs.
In summary, be nice, know your rights, and pack strategically in a way that allows you to avoid checking your legs and also gives you the ability to move quickly through the airport and hopefully your next plane trip will go as smoothly as possible.

2018 Goal = FULL IRONMAN

Sometimes it’s good to take a chance and register for a race you don’t know if you’ll be able to finish even though it makes you feel nervous, intimidated, and full of self-doubt.  I felt that way with my first half marathon, and then again with my first Half Ironman, and now again as I face down my next challenge… the FULL IRONMAN.

I think we tackle challenges like this because the reward is even greater when you cross the finish line, so on June 10, 2018, I will attempt to swim 2.4 miles, bike 112 miles, and then run 26.2 miles through Boulder, Colorado all before the clock strikes midnight and the calendar flips over to June 11th.  Can I do it?  I honestly don’t know.  There are so many variables with training, nutrition, conditions of the day, issues with my leg, and any other number of things I can’t predict, and the unknown is extremely intimidating.

ss kit transition
In transition at the Boulder Peak Triathlon in Boulder – July, 2017 (leg issues are one of the issues that are hard to predict, and sometimes my leg gets stuck in my prosthesis after the bike)

Completing a Full Ironman is a huge accomplishment for anyone.  As far as I’m aware, if when I complete this, I will be among less than 10 female amputees to complete a Full Ironman distance triathlon, which makes this even more intimidating.  That said, I intend to control what I can control, remain consistent with my training, listen to my awesome coach (Mark Sortino), work through leg issues early in the process, and tackle this extremely scary goal I’ve set for myself in 2018 because that’s what I can do to give myself the best chance at success.

What are your goals for 2018?  I’d love to hear about them in the comments!

Text: Ironman Boulder across a photo of the Flatirons

P.S. If you like the kit I’m wearing, the 2018 Skirt Sports kits are available for pre-order until December 15th at https://www.skirtsports.com/product-category/triathlon/  

 

 

Adapting & Giving Back – Interview with Craig Towler

For this blog I interviewed Craig Towler, who started an organization called the Amputee Concierge in order to help people find answers to their questions and connect them with resources following limb loss.  I first heard about Craig shortly after the incident that lead to amputation of his legs happened, and was recently connected with him through my friend Nicole DeBoom.  Craig is extremely insightful about amputation and life in general, so I hope you enjoy reading the thoughts that he was gracious enough to share below.

Can you talk a little about when and how you were injured?

My amputation was the result of an intoxicated driver on July 4, 2016. I made it home after putting on a 10k/5k run at the Boulder Reservoir to unload my vehicle. I was excited to go celebrate the 4th of July with friends and watch fireworks. Just as I was about to finish unloading, I felt an impact that pushed me into the back of my vehicle, and before I knew what had happened I looked down and saw both of my legs detached.  I immediately knew my life was in danger, and action had to be taken immediately for me to survive. I was in tremendous shock at the time, but I remember everything very vividly.  I was standing behind the tailgate of my SUV when I felt the impact, and I was pushed into the back of it with my legs hanging out the back.  Shortly after the impact, people who were nearby at the time came to my assistance and called for an ambulance. I instructed them to help me lay flat on the ground. To this day, I’m still not sure how I had the mindset that I did, but my thoughts were very clear, and I knew exactly what needed to happen if I did not want to die.  Once I was on the ground, I could see the amount of blood that I was losing, and I was losing it very quickly. I then instructed the people around me to remove their belts, and secure them as tightly as possible to my upper legs above the injury to work as a make-shift tourniquet. I later learned from the doctors that the tourniquets had stayed on my legs until I entered surgery hours later, and are the reason that I am alive today. I was taken to the local hospital near my house, and was then air lifted to another hospital with a more advanced trauma unit. Once there, I underwent 5 surgeries throughout the course of the week involving the amputation of both of my legs. One is below the knee, and the other is through the knee. Skin grafts were also taken from both of my upper legs to close the wounds. I was in intensive care for over a week.

 

Craig in a hospital bed hooked up to a bunch of wires, but giving the double thumbs up

What sort of familiarity did you have with the amputee/disability/adaptive community prior to your injury? 

Prior to my injury I was not very involved with the adaptive community. Through my work with race production I saw some amazing adaptive athletes compete, as well as worked with a few organizations like Athletes in Tandem, and the Challenged Athletes Foundation.

What sorts of thoughts went through your mind the first few months following amputation?

A lot of thoughts were going through my mind. In the beginning, everything was happening so quickly it was hard to comprehend what was really happening. Everything changed in a split second. When such a large change takes place without any warning or preparation I think it takes a while to come to terms with the new reality. I’ve added a paragraph from one of my own blog entry which describes this, and how I decided to cope with things personally: “Focusing on what we can control is how we become empowered. As a bi-lateral amputee I was never asked if I wanted to lose both of my legs. No one ever asked, ‘is it cool if you spend the rest of your life in a wheelchair?’ Asking what if, and why me are all things that cause cycles of waste and lead to negativity. The reason for this is there is not an answer to these questions. Therefore, we need to only present questions to ourselves that have answers. Like; ‘how can we improve our life circumstances?’ That’s a very broad question, so let’s bring it in a little.  How can we feel better on a day to day basis? Still a little broad, so let’s make our world a little smaller, and start with ‘what can I do today personally to make my tomorrow better?’ This is where I started. I was uncertain (and still am) of my future, and had no idea what I was going to do with my life now that I’m an amputee. With this uncertain information, I decided to focus on what I could control in that moment.”  Read more of Craig’s blog by clicking here.

What sorts of things helped you adjust to your “new” life as a person with a disability?

Honestly, I don’t think there was any one tangible thing that did help. Time has been my greatest ally in the process. I have a better understanding of time, and how valuable it is, as well as how healing it can be.

Have you been fit with prosthetic legs, and what has that experience been like?

I was fitted for prosthetics in November 2016. It has been a very slow and frustrating learning process due to a few healing complications that have been slowing me down. In order to keep my left knee, and to keep my right femur fully intact I was forced to have two skin graphs taken from both of my thighs. Skin grafts take a very long time to build layers and the normal elasticity you have with normal skin. This restricted me to only walking for about 10-15 min tops once per week. I’ve also had an area on my right leg which has not been healing properly and has prevented me from wearing my prosthetics for the past 5 moths. Just this week I found out that my body was rejecting a fiber wire suture that was used in my initial amputation and was trying to push it out of my body. This process has created a deep pocket inside of my leg, and I’m back to doing wound care every day. I’m hoping I can finally start the real healing process and be back on my feet in a few months.Craig sitting in a wheelchair holding two prosthetic legs, one on each side of him, and wearing a shirt that says "no bull"

Do you deal with chronic pain (phantom or otherwise)?  If so, what sorts of strategies have worked for you (if any)?

I experience phantom pain, as well as just general discomfort every single day. I’m still waiting for that morning I wake up feeling as I did before: refreshed, energized, and ready for the day! I have not used any specific strategy except for an understanding that my body is now different so there are going to be different feelings associated with my new body. The only thing that I did not like was being prescribed drugs to cope with my physical and phantom pain. Our bodies are not meant to be numbed to life just as our brains are not! We are designed to feel pain for a reason, and this is all part of nature’s healing process. I am currently not taking any narcotics for pain, and have not since a week after I was released from the hospital. I am currently weaning myself off my prescribed nerve blocker for my phantom pain and looking for natural remedies/supplementations.  It is a very freeing feeling to not take prescription drugs. In my mind, they are shackles preventing us from being our true selves. Yes, they are needed in certain circumstances, but our doctors have a culture of continuing to prescribe us drugs when they are no longer necessary and it’s up to us to decide what is best for not only our bodies, but our minds as well.

Do you think of yourself as a different person now?  Why or why not?

After a life altering event, especially one where trauma occurs, it would be untrue and naïve to say that I am not a different person. However, I am not a different person purely because of those events. I’m also careful to not refer to what happened to me as an accident, because I do not feel that when something can be avoided it can be called an accident, and takes the accountability out of the situation.

To say a person changes after the event only because the event took place takes away the agency involved in the change. As people, we have the ability to evolve and survive through anything. If we allow ourselves to think outside events can change us, that takes away our consent to what is happening in our own lives. I could say that after my life was changed I became more introspective with my thinking, but to say this takes away any potential I had for this type of thinking in the first place, and in a way, gives control to the outside event.

I’m choosing to empower myself and my thoughts by understanding that yes, I have changed since I have lost my legs, but whether my thoughts have changed is unknown other than the fact that I now have experienced more pain, feelings, and struggles. We have potential in our minds and every life experience unlocks some of the thought potential we have stored. Just as a person travels the world their thoughts evolve with the growing knowledge they acquire. A person who experiences trauma, and pain, gains that same knowledge in respect to those life experiences and therefore unlocks new thought potential.

To allow a horrible event to become something other than that is to take away from the event itself. People will begin to view that event as the turning point for good. The terrible event needs to remain as such, and the focus needs to be on the actual person overcoming adversity. It was the person that overcame adversity and is the survivor, it is not the event that caused this.

Do people tell you that you’re an inspiration?  If so, in what context and how do you feel about that label?

Yes, people do tell me I’m an inspiration. Right off the bat I say thank you and understand that they are very well intentioned. Internally I do not really understand the label, externally I know I’m faced with a lot of adversity and watching someone overcome such adversity can be inspirational. I know this first hand. While I was in the rehab hospital I used social media to explore and connect with people who have experienced similar life changing events as mine.  I was also able to see the amazing things that these people were accomplishing in their lives. This helped motivate and inspire me to try new things and never put up boundaries for myself. I’d like to put myself out there with hopes of inspiring others just as I was myself.

Craig standing between parallel bars wearing prosthetic legs and giving the double thumbs up

What goals do you have for yourself in the next few years?

I’ve decided to not give a timeline to my goals. I find this to be restrictive in a sense, as well as unrealistic with so much unknown out there yet to take place. When we place a timeline on ourselves and our goals, we are restricted to what can be accomplished and in some circumstances, delay a result. If we have a certain amount of time to complete something, why would we finish early? Every dream and goal that I have has a sense of urgency attached to it to accomplish it as soon as possible.

Can you explain the Amputee Concierge – what is it and why did you start it?

Amputee Concierge is based off of a necessity, and a lack of direction that I experienced personally since the day I was released from the hospital. After a traumatic life changing experience the victims are now faced with a lifetime of new challenges. Thankfully we live in a time where there are tons of organizations and victim’s advocacy platforms available to help people, but the problem I encountered was finding them. If and when I finally found an organization I felt could be beneficial, mustering up the courage to reach out to them was also very challenging.

I created Amputee Concierge to help people bridge the gap between the victims and the help they’re searching for by creating a free advocacy platform designed specifically to help people find the answers they need. I want to use my knowledge, and resources I’ve learned through my experiences to help others get their questions answered faster, and have an ally in their journey.

Anything else you would like to share?

I invite you to learn more about my own story and Amputee Concierge. We’re defined and connected by our shared experiences and the connections we make with one another are invaluable with unimaginable potential.

https://www.craigtowler.com

https://www.amputeeconcierge.org

 

Believing in Yourself

“If you don’t believe in yourself, neither will anyone else.” This is the quote I chose to include with my senior photo in our high school yearbook a good fourteen years ago, and it’s interesting to reflect back on this concept. I absolutely gain strength through those who believe in me, and I know I couldn’t be where I am today without the people who have supported me through various points in my life.

There are too many to possibly name everyone, but I think it helps to look at some specific examples. My mom has been a great source of strength through major life changes and is the person I call for everything from deciding what to do with my life to finding the condensed milk in the grocery store. She flew out to support me for my first half marathon and assisting me through my first Half Ironman. My friend Erin and I have supported each other through deaths, marriages, and divorce, and she recently flew out to surprise me for my 33rd birthday. My husband Zach supported me when I decided to start LIM359, has helped me through numerous triathlons, and reads these blogs before I post them. Many of my teachers throughout the years supported me and encouraged me to chase my dreams. The Achilles running group supported me and helped me stay accountable for 1 run a week when I first started running and could easily miss a week if they weren’t expecting me to show up on a Monday. My Skirt Sisters have provided me with an amazingly positive environment to celebrate our athletic accomplishments as women, and Skirt Sports founder Nicole DeBoom has given me an outlet to share my story through her podcast. My LIM359 family has providing me with so many positive connections, and I am always thrilled to see them jumping outside their comfort zones. Because of these connections, I am a better person.

That said, I still think there’s at least some truth to the quote I chose to accompany my senior photo. While I am deeply and truly thankful for the support I receive from those around me and know there is no way I could be who I am without them, I still think that believing in yourself will open the door for others to believe in you as well.

Senior photo with my maiden name: Emily Billey and the quote: "If you don't believe in yourself, neither will anyone else."

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