Team MPI Spring Training Camp

A week ago today, Zach and I were getting home from a 3-day triathlon camp that was hosted by Team MPI in Henderson, Nevada. I have been intending to write a post about camp ever since we got back, and I finally sat down to follow through on that intention today.

We arrived at camp on Wednesday evening for a Thursday morning start. There were 8 total campers, including me & Zach, and 3 coaches from Team MPI who were leading the camp. We came from all over the country – Iowa, California, Idaho, Mississippi, Florida, and Colorado – to this abnormally windy location south of Las Vegas for 3 intense days of training (1 camper had gone early for the 5 day camp, so she already had 2 days under her belt when the rest of us arrived). The intensity of the bike training during camp was amplified by the wind, and according to weather forecasts the wind only lasted the few days we were there and then it went back to normal non-windy conditions…

Day 1 started with a 40 mile bike ride with almost 3,000 feet of climbing and wind gusts up to 50 mph.

The whole group (minus Mark) ready to set out on the 40 mile bike loop on day 1

I had done a 6 hour bike ride that previous Sunday plus a long swim Monday and a short ride on Tuesday, so my body felt like it was still recovering from that when we set out for this ride. The other girls in my group were stronger than me on the bike, so I was having to push myself to keep up with them and was struggling a bit with not knowing what hills were coming next and wondering when we were going to hit the dreaded uphill drainage ditch I’d already been hearing about from people at camp who had ridden this loop before. I was also uncomfortable with the wind because I had my wider-rimmed race tires on, and they are perfect for catching cross-winds and pulling my bike momentarily out of my control (more on this later). Despite the challenges, we completed the 40 mile loop and I was left wondering if I would possibly make it through the full 3 days of camp (I really wasn’t sure at that point because this ride was tough on me both physically & mentally).

Lucky for me, the next activity was lunch, and then we hit the pool. Swimming is my strongest of the 3 disciplines, so I’m usually happy when it’s time to jump in the water. I find it so freeing to be able to take my leg off and just swim because there are no worries about my prosthesis fitting weird that day or rubbing my leg and giving me sores, and I just get to use the body I was given (without any artificial parts attached) to move freely. I was among the faster swimmers so that helped me regain some of the confidence I had lost on that morning’s bike ride.

Coach Mark providing instruction at the pool

After the swim, we set out for a run around the park by the pool and I did a solid 4 miles with two of the other girls at camp. They set the pace a little faster than I would have chosen if I was by myself, but I was able to hang on for 4 miles and it felt great to have accomplished that after already putting in the time on the bike and in the pool. I was exhausted, but more hopeful that I could get through camp (and ultimately Ironman Boulder in 3 months).

Day 2 started in the pool, so I was of course happy about that. We then set out for a shorter ride of around 25 miles with only about 2,000 feet of climbing (and 50-60 mph wind gusts), but this one required us to go up 3 super steep hills – the 3 sisters (we had a different name for them) – on the way back to our hotel. I was able to get up 2 ½ of them, but ended up having to walk up the last half of the 3rd bit… uh, sister. Hills can be tough for me because my knee height discrepancy make me a little wonky when I stand up to pedal – I can do it, but it’s not as smooth as cyclists with two biological legs. I was disappointed that I wasn’t able to get up all 3 of the big hills, but gained knowledge and skills in other ways that day that sort of made up for it. For example, Coach Adam helped us learn how to handle our bikes in the wind gusts and explained not just what we needed to do to stay upright, but the physics of why that made sense in laymen’s terms so we could understand. After that ride, I was exponentially more comfortable riding in the wind, which felt awesome.

Shawnna, Amber, and me with out bikes - Vegas in the background

The final piece of training on Friday was a 4 mile trail run on the south end of town. Based on what I heard, this trail run was probably the highlight of camp for many attendees because they don’t have trails like that in Mississippi or Iowa. I started out on the trail, but there were too many loose rocks and I didn’t want to risk injury to my knee, so I ran back and created my own adventure in the neighborhood by the trailhead. I did about 3 miles at a comfortable pace for me, and met the crew back at the car as they finished the trail run.

On the final day of camp, we started our day at the pool and did some timed tests to gauge our fitness. I actually had the 2nd fastest times of all the campers, so that definitely gave me something to be proud about since I was still internally grasping with the frustration of being the slowest on the bike (I’m consistently making gains, but still have so much room to improve).

All the campers in the pool - Amber, Gary, Zach, me, Lnn, Shawnna, Kat, and Ray

After the swim, we set out on our bikes one last time (still with wind gusts of around 50 mph), and this time my group was lead by Mark, who is the coach I’ve worked with for the past 3 ½ years, and it was really awesome to actually get to ride with him. The plan was to ride out for a certain amount of time and then turn back to just do about 30 miles, but when we got to the turnaround point, our group decided we wanted to tackle the full loop that we’d ridden on the first day of camp. Remember how frustrated I was after the first day’s ride…? Well, this was my redemption ride and I felt SO much better after tackling the 40 mile loop again. Amber, who was the only rider in the same cycling group as me all 3 days, and I chatted about how we’d felt on the first day at certain points in the ride (like when we got to the last long hill before the downhill portion getting back to the hotel), and Mark laughed at us because we were casually chatting while riding up hills we’d been cursing just 2 days before. The wind didn’t seem as bad that day and we knew what to expect since we’d already done the ride (and I’m sure that helped), but we had made some sort of gain during that short time as well…

Coach Mark, Amber, and me on our bikes

The last thing I want to share about camp is that in addition to the amazing opportunity for training, I greatly enjoyed meeting and spending time with the other campers and coaches, both during training and meals as we went to dinner together all but the night we arrived. I gained a lot during those 3 days, and I would be remiss if I didn’t mention the new friends I have whose journeys I can now follow and use as motivation in my own training. All-in-all, camp was a huge success!

Amber, Ray, Coach Mark, Lynn, Gary, Coach Mandi, Zach, me, and Kat out to dinner on the final evening together

Why I Run: Updated Version

I originally wrote this for the Achilles International-Colorado blog in October or 2016, and  I originally posted it on my AmpTriLife Blog in February of 2017, but have since added some additional thoughts at the end of the post to recount the continuation of my journey as a runner.  If you already read my original post, please feel free to scroll to the bottom where it says “Updates as of March 2018.”

We were in the first quarter mile of a Monday evening Achilles workout in Wash Park and I turned to my running buddy Jessica and asked, “You know when I like running?”  She turned to me and responded, “When the weather’s nice?” “No,” I said, “I like running when I’m not running.”

That statement pretty much summed it up for me; I hated running. I tried to run when I was in middle and high school, but running on a stiff prosthetic foot that’s designed for walking is no easy feat. Not realizing what a big difference a running prosthesis could make, I designated myself as a non-runner and accepted the fact that I’d never be a runner like my mom who ran cross-country for Colorado State or my aunt who completed two Ironman Championships in Kona.

Then, in late 2010, everything changed when I got a running leg. I started running with my then boyfriend (now husband) and I couldn’t believe what a difference the new leg made.

I wasn’t doomed to be a non-runner for life, I just hadn’t had the proper equipment!

My excitement was short-lived, however, because I started having piercing pain in my residual limb about two months later. After seeing numerous unhelpful doctors who had never seen an amputated leg like mine before, I finally hunted down the surgeon who did my original amputation in 1986.

I was in luck because he was at a hospital in Pennsylvania and was willing to look at my leg, x-rays, and multiple other medical documents in order to provide a second opinion about what a doctor in D.C., where I was living at the time, had suggested as my best option.

It was determined that I had a neuroma (basically when your nerves bundle up into a painful ball and send shock waves of pain up your leg when pressure is applied to it—a situation that is inevitable when you wear a prosthetic leg) and I needed some bone shaved off the bottom of my tibia because it was quite sharp and causing my skin to be in a constant state of anger.

So, there I was, in my first year of law school and about to spend my Spring Break on Percocet and unable to wear my prosthesis for at least 2 months.

Me shortly after my revision surgery in 2010 – I was loopy on pain meds

The next two years or so were filled with ups and downs as we struggled to find a comfortable solution for fitting my “new” residual limb. I struggled with new kinds of pain and it seemed like the surgery had only moved the sensitive places on my residual limb rather than eliminating the pain. I was frustrated that I had gone through the surgery and months of recovery without seeing any positive gain. I exercised less and complained more. It had a deep impact on me and I started to feel like I didn’t really know who I was anymore.

Fast forward to March of 2013. I had moved to Colorado and my friend Jessica convinced me to walk a 7K with her. I hadn’t attempted running since 2010 because I was afraid that the increased impact on my residual limb while running was what had caused the neuroma in the first place, but I knew I could walk that distance. The excitement of race day got to me and I decided right then and there that I wanted to give running another shot.

Jessica & I after the Running o’ the Green 7k, which we walked together in 2013.

When I first started running, I ended up walking most of the time, but Jessica stuck with me and encouraged me to push myself a little more each time. I found Achilles and we started “running” with them consistently on Mondays. There are many weeks I would have skipped running altogether had it not been for Achilles. Knowing that I have a group of people who expect me to be there and support me no matter what really helps keep me motivated.

When I first started “running” with Achilles, I probably walked over half of the 2.5 mile loop around Wash Park, only running in short spurts because that was all I could handle. On a Monday Run in October of 2014, Jessica and I were tired from the Hot Chocolate 5K the previous Sunday so we decided not to push ourselves too much at the Achilles run. I could hardly believe it when we ran the entire 2.5 mile loop without a single walk break and we held a pace of 10:27 minutes/mile. After 6 months of consistency, I felt like I’d overcome some invisible barrier that was holding me back from being a real runner.

Achilles friends, Ethan, me, Jessica, Sasha, and Jessica after the Hot Chocolate 5K in Denver, October 2014

What’s even better is that I finally felt like I could call myself a runner! My neuroma has not returned and my residual limb has started building muscle, which has actually made my prosthesis fit better. Rather than causing pain, running has actually decreased the pain I tolerate on a daily basis because of my prosthesis.

The bottom line is that I hated running for 6 months, but kept with it anyways because of the support and encouragement of my friends at Achilles. Without them, I never would have overcome that invisible barrier and I wouldn’t be able to call myself a runner today.

I run for the typical reasons people run (fitness and so I can eat more pizza), but I also run because there have been times when I couldn’t.

Updates as of March 2018:

My journey to become a “runner” continues to evolve as I put in more hours and complete the sets my coach writes for me to get both stronger and faster.  Some of you know that I started doing triathlons so I would have a challenge without running terribly far (my idea was to do Sprint & Olympic triathlons, so the longest run would be a 10K).  Ironically enough, I’ve worked up to longer & longer distance triathlons, and am signed up for my first Full Ironman in Boulder this summer – so much for not running long distances, but I’m apparently a glutton for punishment (in the best way possible)

Even more than this increased confidence in my own strength, running has given me a whole community of women who truly support each other, through the good and the bad.  Nowhere has this been more apparent than with my Skirt Sports Sisterhood.  When I’m with my fellow Skirt Sports Ambassadors, I am energized and rejuvenated by their support and energy.  Running brought me to this community, and for that I am extremely grateful.  Because of the support system I have around me (including my coach, my husband, my family, my friends, my coworkers, and my fellow Skirt Ambassadors) that helps to build me up and keep me going when I get tired, I think I finally actually really believe that I am a runner, and I’m proud to carry that label.

running the Skirt Sports 13er with friends and fellow Ambassadors


Self-Modified Clothing May Not Be the Only Option: Introducing PATTI + RICKY

I’m used to making it work when it comes to clothing and shoes, and I think there’s a lot to be said for that ability to adjust for your environment. That said, living in a world intended for people with 2 biological legs & feet sometimes leads to a little bit of frustration.
For example, I search high and low for cute work-appropriate shoes that I can wear, which can be tough because I need them to have very little heel, no strapless backs, and preferably made of something that won’t permanently stain my foot shell.

Photo comparison of clean footshell vs old video that's been stained by my shoes, which is completely black on the bottom

Another area of frustration/sadness is having to chop the leg off my running tights because the way my running blade is attached to my socket means that it is a lot thicker than a regular thigh and running tights can’t stretch enough to fit over that part of my leg. This means that in order to wear running tights, I have to cut the leg off at the thigh on the left side of my pants, which is fine unless I want to wear them in my walking leg because then I just look silly with one pant leg chopped off above the knee for no apparent reason.

Emily's legs while running showing the left pant leg cut off above the knee

This works, functionally speaking, but it isn’t ideal and I cry a little every time I have to amputate a new pair of pants and I can’t wear them for any purpose other than running.

running tights with a pair of scissors lying on top of them

same pair of running pants with scissors on them, but this time with the pant leg cut

This whole making it work thing is what I’m used to doing, and I never really gave it a whole lot of thought as to how it might be different until I started talking to my friend Alexandra Connell, who I met through another mutual friend (thanks, Jess!). Alex is the founder of PATTI + RICKY, which is “an online shopping experience that offers stylish and functional designer products for individuals with disAbilities.” From fidget jewelry to jeans for people who use wheelchairs to stylish cochlear implants, PATTI + RICKY is bringing brands and products together so people with and without disabilities can access beautiful and inclusive clothing and accessories.

screenshot of heart-shaped fidget ring on PATTI + RICKY website
Although Alex hasn’t yet solved my shoe and running tights dillemas because I just told her about these issues this week, she is already on the hunt for companies who may fill this gap. I so appreciate Alex’s passion for this business and her desire to provide this amazing and inclusive shopping experience.


Discussing Stereotypes & Inspiration

This past Thursday, I had the privilege of going to lunch with some students from a private K-8 school in Denver to talk about stereotypes.  Their teacher had reached out to me after they spoke with my friend Alina (learn more about her story here) because they wanted to talk to someone who was both an amputee and an athlete.  The students have been working on gathering information and talking to real people with different experiences and relationships over the past months in order to learn more about stereotypes, and this will all culminate in a project that will be presented at a school EXPO later this month.

One of the questions these students asked me (as I was stuffing my face full of nachos) was what stereotypes people make about me as an athlete with a disability.  One of the first things that popped up in my mind was being stereotyped as an inspiration.  I mentioned this, and one of the students expressed that this didn’t seem like a terrible stereotype to deal with because it sounds very positive.  And, I’ll admit, on the surface it does seem positive, and it’s definitely not as bad as the stereotypes about groups such as lawyers, but I explained to them how it could also be wildly inaccurate.

I started giving them a made-up example to help illustrate my point, but then realized Oscar Pistorius is actually a perfect real life example, so we talked about how the whole world saw him as an inspiration… until the veil was lifted and his true character was revealed.  For years, people classified him as an inspiration because he was an athlete with a disability (and very fast), without giving any consideration to who he actually is as a human being.   After the whole incident, people started expressing that he had always had a bad temper and was a sore loser who would act out aggressively following a loss.

The other issue surrounding the use of the word inspiration when talking about people with disabilities is that it can rely on the assumption that a disability is a bad thing that must be overcome, and also that living with a disability automatically makes you exceptional – in other words, it objectifies people.  Stella Young does a much better job describing this concept than I could ever do, so I’m just going to direct you to her TED Talk if you want to learn more about this idea.

In my opinion, we should save the word “inspiration” for those who are truly good human beings and who do things that instill a desire to do good in others. By labeling someone as an inspiration based on one small aspect of what can be observed about a person’s life (like a complete stranger witnessing me running a race with a prosthesis), not only are we objectifying people based on assumptions and stereotypes, I think we are also minimizing the power and meaning of what can be a very powerful word when used appropriately.

There’s No “Right” or “Wrong” with Fibular Hemimelia – Interview with Mariale

For this blog, I interviewed Mariale, who is the mother of a 6-year-old boy who was born with fibular hemimelia (FH), which is the same diagnosis I was born with.  Mariale and her husband chose the leg lengthening process for their son rather than amputating (as my parents did), and I wanted to help share their story so people can understand that this is a complex and difficult decision with no right or wrong answer.  Whether a family chooses amputation or leg lengthening, we all need to support each other on these emotional and challenging journeys.  Thank you to Mariale for sharing this glimpse into your life!

Can you tell me a little about yourself, your son (including current age), and your family?

My name is Mariale, I’m 39 years old, married for the last 12 years to Seiichi and we have been together for 19 years, and I’m the mother of 2 wonderful kids.  Sanae, age 9, she is a very active and open little girl who is always making new friends, and Shigue, (short for Shiguetoshi), he is my FH boy, he is 6 years old and is finishing K3 and soon to be going to grammar school. We live in Mexico City, both me and my husband work full time, he works at a Japanese trading company, and I run the family business, that is a service agency for fast food restaurants equipment.

The whole family!

When did you find out that your son was going to be born with a limb difference?  How did you find out?

We found out on our schedule 34 week ultrasound.  It was a surprise because on all the other ones nothing showed, but in a way it gave us time to prepare.  The doctor was honest with us, and told us that he didn’t know what it was, all he could see was a shorter leg, but in his 30 some years as an Obstetrician he had never seen anything like this. So he sent the ultrasound to a genetic specialist to find out if something else was wrong, and the results were ok, it was only a discrepancy in the leg. We were almost to our due date so all we could do was wait and see until he was born.

photo of Shigue as a baby

What was your immediate reaction when you received the news about your son?

Shigue was born on November 13th, 2011. Like any other birth it was full with excitement and happiness – he was a strong, pink, crying little thing, with one tiny left leg and 4 toes. They rushed this little 3.1 kg baby for a bunch of tests, and after a few days the doctors had a diagnosis. He gave us this 2 mile long diagnosis that was something like “CONGENITAL FIBULAR HEMIMELIA WITH MISSING METATARSALS OF THE PROXIMAL BONE AND XXXXXX.” I can’t remember what else…  So the first thing that came to my mind was, my son is going to die, and I guess that was what my face and my husband’s face was showing because the doctor immediately corrected himself and said, ohh he is ok, he is only missing one bone.

I thought, “God, can you please start from there!!!!” I honestly couldn’t understand the need to give such a mouthful of complicated words that only scare you half to dead, rather than just saying, everything is ok, he’s missing a fibula bone on his left leg, and it is called Fibular Hemimelia.  He handed us some copies of information about it and with that short diagnostic of Fibular Hemimelia on our hands we started researching and making calls. We soon found out that FH is not very common and that many doctors didn’t know what we were talking about.  My brother-in-law recommended that we contact Shriner’s hospital in Mexico City. We did, and they gave us our appointment for October 5th, 2012, almost a year after Shigue was born.  So, in that first year, we only researched.

I found out about a group on Facebook and through that group got the info for Dr. Standard at The Rubin Institute for Advanced Orthopedics in Baltimore and Dr. Paley at The Paley Institute in Florida, both known for their work in reconstructive surgery of congenital defects. I found out about superankle surgery and what a lot of kids have gone through, so we decided to try and find out if our son was a candidate or not for reconstructive surgery, and for that we waited 11 months for our appointment in Shriner’s. We also sent x-rays to both Dr. Standard and Dr. Paley to find out what they said

What options did doctors recommend for your son?

Here comes the fun part… Shigue was diagnosed with a type 3 FH, which is a mild to severe kind of FH.  Dr. Paley and Dr. Standard both agreed that he was a very good candidate for superankle and reconstructive surgery, and although they would need further analysis to make a surgery plan, as far as they could see on the x-rays, he had a good-enough ankle to handle the procedures.

In Shriners we got a whole different story.  Since Shigue’s case was borderline severe, they did not have 1, but 3 clinical sessions, to come up with a surgery plan.  The clinical session at Shriner’s was where all the doctors gather around and discuss the case, and through that they decided that the best option was to amputate.

By this time Shigue was about a year and a half old, and had started walking with his AFO’s (ackle foot orthoses).  So, we had 2 different expert opinions and we had to decide what we believed was right for Shigue.

Which option did you choose?  Why?

We chose lengthening because after all we had seen online, and after doing some very, very extensive research, we came to the conclusion that we wanted to give Shigue´s leg a chance.  For me, amputation has always been so final, and with lengthening you can always make little corrections here and there, and if something didn’t go as planned, we could always come back to amputation, but not the other way around.  Also, we had been assured that Shigue was a good candidate for lengthening, which is not every case for everyone with FH, so we might as well go for it.  It was not an easy choice for several reasons, and the most important one was eventually money.  We had to figure out how we were we going to travel to another country to make all this happen. So, we started a Facebook page for 2 reasons: one to do fundraising for our son, and two, to translate all the information we gather to Spanish.  This is a one in 75000 births, so there must be other people out there in the same situation we are in, so we could start to help spread the word

We got such a good response that we decided to start a foundation called “Lets help others walk.”  Our main goal is to create awareness about FH, and to give all the information we can find on the 2 treatments.  I’m a strong believer that both paths are ok, and it all comes down to what is good in your gut, for your child, and your family.  You can see all this here (it is in Spanish though).  (Side note from Emily: Mariale also graciously translates some of my blog posts to Spanish so they can be accessed by families in this Facebook group)

Is your son aware of his limb difference?  Does he see himself differently than he sees his friends?

Yes he is – we have always talked about his little foot, and how all the people have different things, like mommy has glasses, daddy has small eyes, his sister has long and not so curly hair, so an extra bone here and there is not that much.  He knows he has one toe less than his friends, but so far he is ok with this, and considers this his normal difference with the others.  He knows that the doctors work on his little leg to help it catch up with his big leg.  On a side note, while he was on his fixator for his lengthening, he was explaining the process to his cousin, a girl about 12 years old who was sort of shocked, hahaha. He was very honest, and saying, “so they break the bone, and this things here turn and make my leg grow, and this thing here holds everything in place,” and so on… She finally turned to him and said, “you are such brave and special child!”  He looked at her and said, “Noooo, I’m not special, special people can fly!!!!”  As you can see, he is pretty ok with his little leg.

What sorts of things does your son enjoy doing? 

Everything, he loves to build stuff with his legos and do puzzles when we are in doors.  Plants Vs Zombies is an all-time favorite right now.  When we get the chance to go on holiday he loves to swim and run and play sports. In school he’s always playing and running around with his friends, just like all his friends.

Shigue palying with his toys

Do you ever think he feels limited?

Only the first couple of days after his surgeries, and that only lasts like 2 weeks.  After he re-learns how to walk, we have trouble keeping him still.  Last year he had a fixator, and the coach from soccer told us that the fixator was an “advantage” against his friends because he was kicking everyone with it… So no, he is not limited at all.

If you could tell parents one thing about raising a child with a physical difference, what would you tell them?

To never hold him (or her) down.  Sometimes we tend to overprotect our child (with our without a physical difference), and they need to learn on their own what they can and cannot do.  I also think you should always support them and push them to go forward and to just keep trying.

Is there anything else you’d like to share?

This is an emotional journey and we have our good days and our very bad days, but once you have made the decision of what path to choose on the treatment for FH, don’t let anyone tell you that you’re wrong.  There are no right and wrong choices here, only different paths for different families, from which we all can learn so much.  Love and good luck.


Amputation Does NOT Equal Failure

Amputation is a permanent alteration to one’s body that can be extremely traumatic. Despite this truth, it is time that we stop labeling amputation as “failure.” I have heard too many stories of doctors doing everything medically possible to “save” a person’s limb even when the known outcome of such “saving” is a barely functional limb riddled with pain before ever giving an individual the option of amputation. This person’s limb may be “saved” in the sense that they get to keep their biological parts, but their life can be fraught with limitations (and sometimes countless surgeries).

I’m not saying that life as an amputee is all sunshine & rainbows, and there are definitely aspects of it that are very hard both physically and emotionally, I just think we need to reframe the conversation. Instead of looking at amputation as a last resort (aka doctors have “failed”), we need to look at it as a viable option that should be objectively presented to those who are having to make such a tough decision.

My friend Alina went through years of trying to save her limb, only to rediscover all she was capable of doing after she amputated her foot (you can read more about her story here). I knew a few guys at Walter Reed who went through years of limb salvage and were only able to walk with the assistance of a cane. They ultimately chose amputation and both were back up and running within a few months.

Alina wearing running clothes and a running leg and flexing for the camera looking strong

My parents, too, had to make a difficult choice when I was a baby. I had a perfect little left foot with 5 healthy toes, and they could have chosen years of lengthening surgeries and bracing in order for me to keep my biological left leg (to read more about this decision, check out the interview I did with my mom at this link). Lucky for me, my parents understood that amputating at a young age would enable me to grow up without knowing any different, without the years of painful surgeries, and with the ability to climb trees, play sports, and keep up with my friends on the playground. This was the right decision for me (although lengthening is right for others), so I’m grateful to my parents for being able to see through the initial shock of cutting off part of my body in order to give me the opportunity to be as functional as I am today. Today I run, bike, swim, have a husband and 3 loving cats, work as a disability rights attorney, and serve as an ambassador and occasionally model for Skirt Sports. Did amputation equal failure in my case? I’d like to think not…

watter bottles, bag of index cards, and me on the track - putting in distance on the track makes me faster and mentally tough

Is success after amputation everyone’s story? Of course not. Should individuals faced with this decision be provided all options with the good, bad, and ugly facts of each option presented in an honest and objective manner? Absolutely. Nothing is guaranteed, but individuals making this decision should get all options without any negative opinions from doctors and medical providers cast onto any one specific choice, which is what classifying amputation as failure does. Thus, we must start thinking of amputation as an option that could potentially present an individual with a good functional outcome rather than as a failure.

The Importance of OOST

This blog is in response to a question I got about out of socket time (OOST) from my friend Emily, who is a fellow amputee:screenshot of Emily's question - "How much time a day should you be in your socket and how do you know if you're pushing it?"When I was a kid, I would put my leg on in the morning and often not take it off until shortly before bedtime. It was fairly common for me to take it off while watching tv in the evening, then hop to bed (which I don’t recommend for any amputees now that I know better), wake up the next morning & the first thing anyone heard from me was, “MOM, WHERE’S MY LEG??” My mom would usually reply with, “You left it under the couch, Emily.” I’ve always taken my leg off to sleep, and as I’ve gotten older I have grown to really appreciate more out of socket time, or OOST as Zach and I call it.

It’s probably no surprise to anyone that I’m pretty hard on my residual limb, and I always have been – from riding horses and walking around the barn for 10-12 hours a day to waiting tables and working on my “feet” for 12+ hours a day to training for triathlons, I put my residual limb though a lot. Because of this, I have to be very aware of any aches, pains, or changes to my residual limb and try not to ignore any signs of distress because I could end up at a point where I can’t wear my prosthesis and have to get back on crutches for a little while if I ignore the early signs. This is equally important whether you are an extremely active amputee or not because ignoring signs always carries the potential to lead to bigger issues with sores getting infected or nerves getting very angry, among other issues.

Unfortunately, I learned this lesson the hard way. When I was in my teens, I could ignore this stuff and bounce back from it fairly quickly. I remember one year after the annual horse show I helped organize and run when my residual limb was a total wreck following the event, and I had to stay out of my leg to give it time to heal. But, 3 or so days later I was back to normal and so I didn’t learn my lesson back then…

Fast forward to late 2010/early 2011 when I was in my 20’s and started having some pain on the lateral side of my residual limb. It started out as a nagging pain I hadn’t had before, then I would randomly feel like I was getting volts of electricity up my leg, and eventually these were so painful that I would have to stop and sit down for a while if it happened while I was walking. I finally saw a doctor (actually I had to go through a few doctors because many have never seen someone with fibular hemimelia before and just wanted me to teach them about it rather than actually helping me), and it was determined that I had a neuroma towards the bottom of my residual limb on the lateral side that was causing the shooting electric pain up my entire body. In March of 2011, I went in for a revision surgery to have the neuroma removed and some bone shaved down. I was out of my leg and on crutches for a good 2 months or so, and then had to walk with crutches or a cane for a few more months after that. It feels like it took a couple years after that to get back to where I was before the surgery as far as comfort goes, so it was a pretty long haul.

Emily in a hospital bed shortly after revision surgery in 2011

Following that experience, I have been way more cognizant of any differences I feel in my limb, and I also try to get a few hours of OOST every day before going to bed. This, to me, feels like a preventative measure so I can avoid major issues like I went through 7 years ago. I don’t always get as much OOST as I’d like because of events that throw off my schedule, but my standard practice is to take my leg off after I’m finished with any after-work choses that are easier to accomplish with my leg on (like making dinner). I also make sure to give my leg a few extra hours of OOST on the weekends when it’s possible.

The exact amount of time you can healthily stand in your leg is going to be different for everyone, so what it really comes down to is listening to your body and not ignoring the beginning signs of distress. However, just because you do this doesn’t mean your body is going to cooperate, so you may still have to deal with injuries or sores or other issues. That said, I still think it’s smart to do all you can to avoid major setbacks. A proactive measure like OOST is at least a step you can take to try to improve your overall health and wellness.

P.S. If you like the tights I’m wearing in the image at the top of the page, you can buy yourself a pair at