This past week was AMP CAMP WEEK. I could probably write an entire novel about why this has been the week that makes me BEAM, for like the last ten (honestly, I lost track) years. I'm smiling just thinking about it. Every single time I meet a young amputee, I tell them about the Amputee Coalition Youth Camp, and why they absolutely have to go.
It's one week at Camp Joy in Clarksville, Ohio, where about 140 young amputees and 35 counselors all gather for the most fun time ever. This was my third year as a counselor and it's probably the most rewarding job I know. Did I mention we're ALL missing at least one limb???
This is the week when the kids throw their legs off, race up rock walls, jump through ropes courses, take endless flips in the swimming pool, break out into flash mob dances at lunchtime, race each other on the basketball court, get into some aggressive games of Gaga, swap prosthetics, and walk around camp with a smile that comes from knowing you're around people who look like you. When I walk down the dining hall, around ~180 other amputees, I don't get any reactions to my slight limp. Because no one's paying attention to it.
The kids at camp know there will always be stares/questions/some pity coming from strangers, the people who come up to us and give us a congratulations on walking outside because 'Wow, you're doing so well despite...' BS. Despite what? At camp, I see my kids' faces light up when they find a friend who teaches them how to tie their shoe with one arm, when they learn how to break-dance in a large crowd and totally own it without hesitation, when they realize they're a beast at sitting volleyball, and actually enjoy hiking when there's a group willing to find ways to get those legs up the terrain. They smile, they are accepted, they celebrate themselves... they realize they can do SO MUCH if they just try. That's what camp did for me, and that's what I want for my campers. We have late-night chats about the kids at school, how to fit tight jeans over prosthetics, how to clean liners the right way, how to demand a better prosthetist (yes, there are bad ones), how to get involved in sports, who they talk to when they need help... We teach them independence, because that opens the door to everything for us. Being our own advocates.
As counselors, we show the kids that they never have to settle. Yeah, in the non-camp world, when our campers are back in a pool of able-bodies, that tinge of 'Here we go again with everyone watching/I look different doing XYZ than everyone else here' may kick in, but if the kids just hold on to what it felt like when they tossed aside their hesitations at camp, hold onto the memories of how much fun they had when they just went for it, and channel that mindset for whatever crowd they're in, they won't hold back -- they'll kick ass. The kids realize if they're willing to adapt just a little bit, they can do anything. You want to climb the rock wall at your local gym? Go. Right now. Show 'em your one-arm strength. You want to go down the waterslide at the pool party? Throw the leg off. Who cares if you don't walk up the stairs - hop. Find a way. You know you want to go down that slide... Nervous about that limp when you walk past lockers in the hallway? Let's get you in shorts, and teach you a dance. Walk down the hallway with some confidence in just how balanced you really are.
And I obviously go back to see the counselors, too. We're best friends, and we've been there for each other in more ways than I can count. They brought out the stronger side of me that celebrates my body. And that's special. It's a unique perspective we have, celebrating a body type that the rest of the world would not choose. That's why it's so important as a kid to have that support system. Nearly none of us have amputee moms, dads or siblings... but we have each other and that means the world. For just one week a year, it is so rejuvenating to be around a community that 'gets it' at a level most people just don't.
In other news, I've spent the past month exploring Boston on the weekends while working as a clinical research intern. This city is full of so many surprises: beautiful parks, med campuses, boardwalks...and yep, I've already tackled the ice cream list. Still on the hunt for coffee shops, though. I miss a really good dirty chocolate chai from Hopkins. Until then, Starbucks!
Right after leaving Baltimore, my dad and I drove up to Worcester, MA to help Sophia move out of her freshman dorm. She officially finished her first year at College of the Holy Cross! We're so proud of her for making so many strides up in MA. She's made a great group of friends on campus and seems to enjoy her Psych classes. Of course, Sophia and I love any and all chances to move around once school is out, so we spent a few days with family in Connecticut as we made our way back down to New York.
Crazy exciting news once I got back home... Last year, I submitted a grant to the Challenged Athletes Foundation (CAF) to obtain a running leg. When I showed up at A Step Ahead, I thought I was only getting my new foot/ankle/knee as planned, but Erik and his team surprised me by already having my running leg set up!!! It was AWESOME. I spent many hours with the A Step Ahead team practicing taking fast steps, jogs, leaps, and then 'runs' in the parking lot. The foot is so bouncy!!! It was emotional, too. I had not run in 14 years, since I was 6 years old. Besides skiing and swimming, I wasn't used to moving at a much faster pace than walking. It was thrilling and exhilarating. I have a bunch of new exercises to try to build up my core and maintain my ankle. I get tired really quickly, but they say it's just a matter of building up endurance, since my body isn't used to working those muscles at that kind of physical activity level. I trust the process, and just have to be patient. It will come! Little by little, I want to get there. My dad got me a new pair of running sneakers later that day, so we're off to a good start. :)
Then we headed out to Frackville, PA. One of the things Sophia and I look forward to most every summer is staying at our family's house in Frackville. When my grandparents moved to NYC after WWII, both of their big families remained in PA. We have tons of cousins there. Summer is the best time to take trips to Heisler's Dairy Bar for the freshest ice cream and most beautiful mini golf course overlooking countless fields, Knoebel's Amusement and Water Park, Hometown Farmer's Market, and basically every ice cream shop I find. There's always something going on when so much family is in the area. Plus, I found lots of terrain in the woods to practice using my running leg. Chugging through lots of water bottles, but making progress! I make Sophia run with me; even when she looks annoyed, I think she enjoys it LOL.
When we got back to NYC, I signed up for an Ossur Running and Mobility Clinic, hosted by CAF. Ossur is the prosthetics company that supplies all the running legs that CAF distributes through grants. They host running/mobility clinics all around the country, so I was eager to sign up for the annual one in Harlem. So happy that I went! There were tons of amputees with/without running legs -- kids, teens, young adults, adults. Each amputee was paired with a volunteer; mine was a great DPT student from Columbia University. We split into teams, and some awesome Ossur/CAF staff led us in drills on the field, pacing through cones, working on arm position, doing some criss-cross foot work for diligence, widening the angles of our sound limb to make bigger steps, etc. The CAF staff, Ossur prosthetists and volunteers were motivating and guiding us every step of the way. Made lots of improvements. (Although, I have to improve my running backwards skills for the obstacle course they made us do hehe.) I even ran into Travis Ricks, who is my co-counselor at the Amputee Coalition of America Youth Camp, and works for CAF. The day was just SO MUCH FUN. It also happened to be Sophia's 19th birthday. :)
And now, I am all moved into Boston for the summer. Very excited and grateful to be set up where I am... big ventures ahead this summer!
I don’t really know where the end of April and the start of May went, but my gosh, time flies by.
We need to talk about Team Prominence. (#TeamProminence) Earlier this year, I was approached by a group of five Mechanical Engineering students at JHU. As part of their Senior Design project, this MechE team was designing and constructing a prosthetic ankle/foot system for female amputees. And it gets better–Walter Reed was even behind them! So of course when asked if I’d be willing to offer some amputee insight/guidance and test the prototype, my answer was a big YES. Being the only lower-limb amputee on campus finally came in handy.
When I say I love this team, words can’t even do it justice. Talking about gait, ankle adjustments, ease of fit, etc was all relevant lingo for me, but what made the whole experience the best? Devin, Kate, Ben, Luke and Joey. I could not have expected a more welcoming, engaging, respectful or attentive team. This group genuinely wanted to create something useful and get perspective on their product from the very type of person who would use it. There was a particular care they put into The Prominence and every conversation with me. This past month, I finally got to walk on the prototype. A one-day round-trip ticket to NY (trust me, with my track record, my parents weren't at all surprised I tried to make this happen), some help from my prosthetist, and boom, I had that foot attached to me.
While doing laps on a ramp, I had a really cool AHA moment. There I was, walking, in sturdy form and stable steps, with an ankle that my friends had made. And it kind of hit me right then: I go to school with some really freaking awesome (and very smart) people. These five team members designed and built The Prominence in a basement machine shop off-campus, while still tackling heavy course loads as seniors. I am still in awe. I don't take my ability to walk for granted; I'm thankful everyday that I can simply walk to wherever I want to go, but that's only possible with a good foot/ankle. I hope #TeamProminence realized that their contributions have power. Their good hands, brains, work and design have so much potential. (Check out the news coverage of these guys by clicking here!)
And now, as I'm sitting here typing away, I've just finished my last final of junior year. It's a bittersweet time. Of course, it feels good to finish up exams, pack up the physics homework and bio notes, and get ready to finally have some much-loved family time. Plus, I'm a little too excited to start my clinical research this summer (hehe). But I'll miss the familiar faces on campus, seeing my best friends here all day every day, having the busy schedule that, even when keeping me on the tips of my five toes, I honestly love. Every semester here is like that, but I thrive when I'm under some pressure.
Students like those on #TeamProminence remind me of just how much I love being where I am: right here at Hopkins. I'm surrounded by such innovative minds, and every once in a while, I remind myself that we're all headed for exciting futures; it's a special gift to share the very beginning of those journeys with each other (even if it means seeing everyone at their best in the library grind, but hey, coffee helps us all). At Hopkins, I can push myself, tap into my own abilities, and cheer my classmates on; I love it. To be honest, finishing my third year at JHU is sort of daunting.
People rarely hear me say 'I can't wait for...' because I don't really think that way. I like to stay in the moment. Another year deep into Hopkins, and I'm enjoying the ride... but breaks are good. I think it's about time I curled up in bed with some SVU and an Iced Latte in hand...
Happy Ampuversary to me!!! Taylor Swift once said that 13 is the luckiest number of them all, and this year, I'm feeling all those vibes. Today's the one day a year that's such an emotional roller-coaster for me; it's like, an explosion of, "Oh my god, today's the day that cancer took my leg away, I need to cry for a few minutes" and "Today's the day that every amazing opportunity I've had so far can be traced back to, I need to cry for a few minutes" and just about everything in between. Put it bluntly: April 15, 2003 changed everything. So every year, I take some time to reflect on what this day really means; what's the source of all the happy tears???
Right off the top of my head, I can think of all the questions I get from people who love trying to get 'the real scoop' on why my life must be so much less satisfying than theirs (Spoiler: these are funny but real quotes):
- Don't you hate having to put that leg on every morning? All that back pain, collapsed ankle, skin issue stuff?
- Are you aware that you're stared at constantly whenever you walk into any room wearing shorts?
- Does the limp bother you all the time? Knowing that people think you're walking in more pain than you really are?
- Is it annoying going up stairs slowly? Always attracting stares and attention? When your pants make your right knee look 'weird'?
- My all-time fav from a stranger on the street in Baltimore a few months ago: AREN'T YOU SELF-CONSCIOUS WALKING AROUND LIKE THAT? I WOULD BE COVERING UP.
AHHHHHHH. This bad-ass prosthesis of mine has a miraculous means of giving me a very natural step, and I'm thankful to put this efficient leg on everyday. All the back, ankle and skin stuff has become as normal as maintaining good make-up and hair; it's just part of my routine. I love showing my mettle in shorts all the time, because God damn, my left leg has grown quiiiite muscular. And the stares -- been there, done that. Ship sailed on that one real quick. I know I'm being stared at on line for lunch, walking to class, blah blah everywhere. Although I can't speak for all amputees, I honestly don't mind the questions. I understand - a prosthesis stands out, and people like to ask about it. (PSA: If I ever told you I was bit by a shark, sorry, I lied.) A long time ago, I made a decision to toss aside anxieties about who will "get it" and who won't. I haven't looked back since.
These days, I'm busy getting through a chunk of Public Health/Pre-Med classes as a junior at JHU. Every once in a while, though, I remember as I'm rushing to physics class... that my ability to walk across Gilman Hall in a usual rush, isn't my feat alone, and my mentality regarding amputee life, isn't that of all amputees; there's a whole team that helped me reach this point. Adaptive gym teachers, physical therapists, occupational therapists, oncologists, surgeons, nurses, social workers, prosthetists and many many hours of time, are all part of the source of confidence I have in what I can do. Early on, I gained an appreciation for what a team effort really is, and just how wonderful the people who do anything -- no matter how small (like making me a really good iced vanilla latte) -- to make me smile, really are. Since April 15, 2003, it's been essential for me to surround myself with people who bring out my best... and I like to think that I enjoy doing the same for others just as much.
At eight years old, I had a plan: I was going to push and maybe I didn't know what my exact interests and goals were quite yet, but I was going to kick my way forward without limitations. That's what I do. Through the amp club (I made that phrase up), I've learned how to walk, swim, play soccer, rock climb, ski... in the company of the most resilient personalities. There's nothing in the world that keeps me from going back to adaptive ski camps, or the Amputee Coalition Youth Camp, where I get to help kids understand that accepting limb loss is by no means as rewarding and exciting as embracing and celebrating it.
I’m not saying there aren’t challenging days. Are there days when my leg is painful to wear, when it’s annoying or frustrating me, when the stares rub off on me the wrong way? Yes, absolutely. But I would never want to take back the life experiences this leg has given me, the journey it’s taken me on, or the friends I’ve made who share this experience with me. I’m doing what everyone else is doing — I’m handling the set of cards I’ve been dealt. There’s a special distinction between accepting something that challenges you, and wishing things were different. On my bad days, the thoughts running through my head may be something like: Ugh, I wish there was a lotion that was more sensitive to my little leg’s skin, or Hmm how can I modify my socket to relieve the pressure point?
It’s never, ever been, “God dammit, I wish I had two legs.”
So to my beloved little leg, thank you for opening the doors to everything. For an optimistic outlook, an open heart, an empathetic mind, a curious intellect, and a drive to seize opportunity (like when you want to go down a five-story water slide but it's not handicap accessible, so you get the three young amputees around you to make a relay team and hop up every. single. step. because duh, you just love water slides), without getting caught up in who's staring/how different I look/that icky 'but why is it harder for me to do XYZ than for her to...' lingo. You've given me so much.
I am lucky.