Written by Melissa DeChellis:
Have you seen a lot of orange in our posts and pictures or out in the community? I hope you have because April is Limb Loss/ Difference Awareness Month and our community and all who support us wear orange to spread awareness. In fact, today is the very first #wearorangewednesday and you will find many of the Liner Wand’s Wanderers sporting our #wandswearingorange hashtag on their social media posts today, and every Wednesday in April. I am all decked out in orange today, complete with my new badass neon orange NOBULL orange training sneakers which I will be wearing every day in April to play my part in spreading limb loss awareness. Why do I wear orange? I wear orange to let the world know how strong, resilient, and amazing the limb loss/difference community is. I want to share our struggles as well as our accomplishments.
This is a difficult yet rewarding journey to travel. I want to advocate for enhanced support, resources, programs, job opportunities, quality of life, and better medical care for the limb loss/difference community. In April I am inviting the community in to see what life as an amputee adaptive athlete and personal trainer, The Liner Wand’s Community Resource Director, the founder, and president of the 501©3 Adaptively Abled Amputees, the founder and director of Adaptively Abled Fitness, co-creator and co-host of The Adaptive Collaborative Podcast, and a Clinical Research Coordinator at Spaulding Rehabilitation Hospital looks like. The Amputee Coalition’s theme of this year’s Limb Loss/Difference awareness month is “Moments That Matter.” I will be sharing my daily challenges and triumphs as well as reflecting on some of the significant #momentsthatmatter along my limb loss journey. So, I invite you to take a journey with me this month and #takeawalkintheseorangeshoes.
April is always a significant month for me. Not only is it Limb Loss/Difference Awareness Month, but it is also the time of year where I celebrate my “Ampuversary.” Yes, this is an official thing and most commemorate the day with a new or fun activity, while others spend the day reflecting on their limb loss journey thus far. I have done a mix of both over these past 8 years. I have gone on trips, created video montages of my moments that matter, and even got my very first tattoo (the Finnish word Sisu, meaning “extraordinary determination in the face of overwhelming adversity”) down my spine to celebrate my 5th Ampuversary. This year, to celebrate my Ampuversary I am writing this blog during my very first flight since the beginning of the global pandemic to Dallas, TX to attend the wedding of my two dearest adaptive athlete friends and to return to the Adaptive Training Foundation, the place where I found myself following my amputation. I am excited to reunite with friends, coaches, and mentors who have all become a second family to me. While this reunion will look and feel a little different with social distancing and wearing masks, just being in this space will bring me home and give me the mental recharge I need after a challenging year of working 3 remote jobs while also running a virtual nonprofit.
This year is my eighth Ampuversary. On 4/4/2013, I made the difficult decision to amputate my right leg below the knee. While the decision was agonizing and took several years to make, it has turned out to be the very best decision I have made in 41 trips around the sun. I was born with a congenital club foot and hypermobile Ehlers Danlos Syndrome, and despite years of multiple reconstruction surgeries, I excelled in the classroom and on the courts and fields as a three-sport Varsity student-athlete. Then one fateful day, a slide into home plate to win a state tournament softball game completely destroyed my foot ankle. I did not know it at the time but my life was about to drastically change from that moment on. I endured years of failed reconstruction surgeries (16 total) and was left immobilized and in constant chronic pain. Despite the challenges I faced, I graduated Bio/Pre-Med from the College of the Holy Cross and finally attained my lifelong dream of attending medical school. At the very moment when I felt I had everything I had ever worked for in the palm of my hand, fate had other plans for me. Less than a year into medical school I threw a life-threatening blood clot in my already compromised leg which sent me home on a medflight to eventually make the decision to electively amputate my right leg below the knee. By that point, I was stuck indefinitely in a walking boot, on crutches, and in daily excruciating pain. My quality of life had plummeted, I was depressed, and my leg was holding me back from reaching my full potential. My husband and I made the decision together. All I needed to solidify my decision was hearing him say to get rid of that ugly, scarred, nonfunctional foot and ankle and trade it in for an improved bionic one. I woke up from my amputation surgery with a huge smile on my face, feeling an incredible sense of relief.
Unfortunately, timing has never been my thing, and as I lay recovering from surgery the events of the Boston Marathon Bombing were transpiring outside my hospital window. I was stuck in the chaos of an overtaxed medical system caring for the survivors of a mass casualty traumatic event. My rehab was rushed to cleared beds for all the survivors, many of whom lost limbs as well. One of the silver linings, at least for me, of this tragic event was that I had the opportunity to do my rehab and prosthetic gait training with a group of 20 young and remarkable limb loss survivors. All of our PT mats were arranged in a circle in the rehab gym so we could motivate each other through our recoveries. We had a shared comradery, and this was my first exposure to the limb loss community. Some of us have become friends for life and are each other’s biggest supporters. My initial prosthetic care was unfortunately delayed and did not keep up with my rapidly changing limb and eventually, I bottomed out in my socket and my tibia pushed through the skin necessitating a series of revision surgeries (3 in total) and an additional loss of six inches of leg to clean up the damage. This was my rock bottom. The initial amputation and recovery were hard enough. Having to repeat the process an additional 3 times was devastating. Lifelong friends and family disappeared during my prolonged recovery from multiple surgeries. My husband, my rock, and my only constant support, and I had to figure out this journey alone. I had never felt so socially isolated (and this was pre-Covid-19) and alone. I started attending a local support group but yearned for additional social interactions with members of the limb loss community outside of the sterile hospital support group setting. I began Googling “social groups for amputees” and to my surprise, there wasn’t a single one in Boston. At that point, I vowed that when I was back up on two feet again, I would start Boston’s first social group because I never wanted another member of the limb loss community to feel the way I did. So, I started “Amp-Up Your Social Life Boston” on Meet-up and the rest is history in the making. We started small and met for monthly social events, dinners out, picnics, holiday parties, coffee house chats, movie nights, game nights, and bowling. Then we started to rapidly expand our reach and attracted a more active and diverse crowd. We started partnering with local adaptive sports organizations and went sailing, kayaking, paddleboarding, trail biking, canoeing, rock climbing, and golfing. If you can think of social activity, we have done it together as a group. As we continued to grow, I saw the need to turn the organization into a non-profit. In June of 2019, we launched as an official non-profit, Adaptively Abled Amputees. We expanded our mission statement to provide support, social activities, fitness, and wellness for anyone living with a physical disability. I realized that the limb loss community was not the only community that needed enhanced support and social activities to participate in an inclusive tribe environment. We all face similar battles and are so much stronger when we come together and collaborate.
Prior to the launch of Adaptively Abled Amputees, I began my own adaptive fitness journey. I started by working out at a local YMCA. This was an intimidating experience for me, as it is for many others. I felt like none of the trainers knew how to work with me which left me feeling once again isolated and frustrated. I knew there had to be a better way. I then met the incredible bilateral below-knee adaptive athlete Sara Mae Hollandsworth at a fundraiser event for my friend Heather Abbott’s Foundation. Sara Mae was the recipient of two gorgeous high-heeled prosthetic legs. We hit it off at the event and she told me about this incredible gym in Dallas, Texas that she had just finished a training program at. It was started by retired NFL linebacker David Vobora and was a gym that only trained adaptive athletes. They ran quarterly classes of 10-15 adaptive athletes, a mix of civilians and wounded veterans, and was an intense military-style boot camp training program for the mind, body, and soul. Sara Mae encouraged me to apply and several weeks later I was enrolled in the Adaptive Training Foundation Redefine Class 10 in September of 2017. This was the single most transformative experience for me. I was thrown way outside my comfort zone and was challenged to allow myself to become vulnerable, share my whole story, change my perspective, and rebuild myself into a stronger enhanced version of myself. I was sad to leave Texas at the end of the 9-week program but returned to Boston a woman on a mission to bring a little of what I learned home to my own community in Boston. I acquired multiple adaptive and inclusive personal trainer certifications from CrossFit, Adaptive Training Academy, Adaptive Training Foundation, Crossroads Adaptive Athletic Alliance, and the American Academy of Personal Training in Boston. Two years later, Adaptively Abled Amputees launched Boston’s very first comprehensive adaptive functional fitness and wellness program, Adaptively Abled Fitness. Over 60 of the top rehabilitation, fitness, and wellness professionals volunteered their time and talents to help bring my dream to fruition. We graduated our first class of 10 amazing athletes in October 2019 and each improved their strength, cardiovascular and muscular strength, functional movement patterns, mobility, flexibility, balance, body morphometrics, mental health, and quality of life.
We were ready to run a second version of the program when we were faced with a global pandemic. I knew the organization needed to step up in a huge way for a community that was already socially isolated and in need of support at baseline. We quickly pivoted our support, social, fitness, and wellness activities to a virtual platform and since March 2020 we have offered over 350 Zoom sessions (support groups, social hours, coffee houses, community workouts, inclusive yoga, book club, game night, karaoke…to name a few) to individuals living with a physical disability in 30 states and 3 countries! We have not skipped a beat and have exponentially grown our community and tribe. We are now planning a hybrid model of in-person and virtual live-streamed programming for the greater adaptive community.
I met Elizabeth Stone, CEO of the Liner Wand, at the Amputee Coalition’s virtual conference and it was an instant mutual connection. I absolutely loved her passion for bringing a groundbreaking and effective liner hygiene product direct to consumers. She recognized that I am a builder of communities and offered me the opportunity to join the Liner Wand Team as their Community Resource Director. I have enjoyed networking with members of the limb loss community through our monthly Communi-TEE Social events, social media posts, and live interviews, compiling one of the largest resource pages for the limb loss community, bringing on writers for our informative blog posts that talk about subjects that that matter to our community, and developing, launching, and tabulating our community resource survey. The Liner Wand community has exponentially grown, and we are discussing all the pressing issues our community faces daily.
My personal limb loss journey has been a challenging and complex one. However, I have grown so much as a person and leader in the limb loss community. I love this new and improved me. I am finally at a point that I am happy, healthy, strong, able to do just about anything I desire, and comfortable in my own skin.
I was always drawn to the concept of kintsugi pottery. In Japanese culture when pottery breaks, artisans glue the pieces back together and paint the cracks in gold creating a beautiful work of art. I too am a work of Kintsugi art, and all of my cracks and scars tell my story of what I have overcome. On my most difficult days, I envision the gorgeous lighted sculpture called “The Expansion,” depicting a sculpture of a woman sitting and meditating, but the sculpture is broken into pieces and a light from within shines out through illuminating all of the cracks or flaws. We are all unique works of art and are made more beautiful by our scars.
So for this Limb Loss Awareness Month, I challenge everyone in our community to be vulnerable, to share your story including the highs and lows, and let the world know what it is like to live a day in the life of someone living with limb loss. There are so many ways to get involved in Limb Loss Awareness Month. We encourage you to wear orange on Wednesdays as part of our #wandswearingorange social media challenges. Post a picture of yourself wearing orange, tag @thelinerwand, tag a friend, use the hashtag #wandswearingorange, and let the world know why you choose to wear orange to spread limb loss awareness. Share parts of your story, your challenges, and triumphs daily on your social media platforms. Join us as we close out Limb Loss Awareness Month on Friday, April 23, at 12 PM EST as we embark on a community discussion with members of the Amputee Coalition. Learn about their peer visitor program, advocacy initiatives, national resource center, and what they did to help spread awareness during Limb Loss/Difference Awareness Month. There are so many ways to get involved. Every voice and every story matters. So share with us those #momentsthatmatter and wear orange on #wearorangewednesdays !