Join LIM359 & NSCD on February 1st at Devil’s Thumb Ranch. Check out the details here!
It’s hard to believe that we held our very first LIM359 event in Denver just 18 short months ago! Check out the pictures from that lovely June picnic & relive the memories at http://lim359.wordpress.com/61413-potluck-picnic/
Check out Gary & K.I. bombing the hill in fresh powder at Winter Park on December 14th. Huge thanks to NSCD for helping make this opportunity possible!
This has been a really crazy summer.
On July 8th we took my mom to the emergency room. My gut told me to stay even though my mom and I were positive that she just had food poisoning. They ended up doing a cat scan because she has a history of cancer. The doctor came back in and asked my mom some questions which made me a little nervous. Sure enough my mom’s cancer was back and with a vengeance!
Not that cancer can come at a good time but this was extremely stressful for me. I had to be the one to call my dad who was at work and then rush my mom to her cancer doctor 30+ mins away all while trying not to scare my kids. The doctor wanted to do surgery right away and my mom being my mom and stubborn told him he had to wait a week. She was more worried about missing my daughter’s second birthday party.
To add on top of that, my husband, my daughters and I were leaving the next day for a week in California with my dad. I also got a new leg the day before we left. You know how doctors tell you to take it easy when you get a new leg? Well I hardly ever do, but this was really a test for it.
My dad has always pushed me to my limits and boy did I put it through a test. I mean climbing up and down playgrounds and climbing up a 6ft sand cliff. Well, it passed with flying colors! I was able to do things that I have never been able to do even when I was little and bad two legs.
It was so much fun that a week later I was laying down on my bed with my leg up and all of a sudden a bunch of sand fell out! I am still new enough to the amputee world that I never thought to stop and see if sand was in my leg. I have never laughed so hard at myself like that moment.
California was something that my little family needed so much.
My oldest received a new diagnosis before we left and my youngest ended up needing afos. These were very hard for me to handle. It is one thing to go through so much medically yourself, but to watch your babies go through things is completely different. I have had afos since I was a year old, but I still sat there and cried as the same doctor who made my first pair and still till this day makes mine do my daughter’s first set. Then to sit here and figure out what my oldest diagnosis was and how it explains so much with her. It was really rough.
It was so nice to sit on the beach and watch a kid who can’t handle new textures playing in sand and dump it on her head. Then to turn around and see your 2 year old waddling right behind my dad up a cliff was wonderful and amazing.
Well as soon as we got home we got the kids into swimming lessons and I was forced to get into a pool for the first time since I became an amputee. It was amazing until I got a really bad blister on my foot.
And then we signed up my kids up for gymnastics. When you have a two year old gymnastics turns more into PT for mommy then fun for her!
My oldest turned 4 this month! It’s amazing how easy going she can be on a good day. All she wanted was to go play at a place kind of like chucky cheeses and all she asked for was a princess cake. She also started her second year of preschool. Due to her diagnoses she didn’t handle the summer very well. We kept her busy between the library, children’s museum, and lessons on top of all the trips to the doctors. She had a hard time at first with all the new kids but once her best friend appeared she was fine. She has been doing so well that she fights us to come home.
I am having health issues right now. Between my spina bifida issues and my mental issues I think my husband might just lock me up, haha.
I hope to meet everyone at the pizza party!!! We will be there with the kids.
Learn more about Athena here.
I am Michelle. I am an able bodied member of LIM359. Dr. Franklin invited me to assist herself, Emily H and Whitney in the beginning phases of LIM 359. It has been exciting to help them get the ball rolling because I knew what a great resource this would be. There have been many people in my life that would have benefited from this group.
One of my best friends growing up had Muscular Dystrophy. Troy had the best outlook on life. With me in tow I walked and he drove his electric wheelchair, mile after mile in our own quest for the Holy Grail. Our Holy Grail was to fill the boot of one of the many firefighters who collect donations for MDA every Labor Day. I never personally saw him walk but my sisters did. My memories of him are in his manual wheelchair, then on to electric and finally one that fully reclined and had a controller that allowed him to operate his chair with his mouth. The disease ravaged his body but in all the years I knew Troy, there is not one time I can recall that he ever complained. He rejoiced when he went to camp and got to dance with his friends. I was always excited when he came home from camp to hear his stories. It was such a wonderful resource I remember always being happy he had that available to him.
Troy never had the opportunity to achieve his goal which was simply to live until a cure for Muscular Dystrophy was found. His “expiration date” was the age of 17. He lived until he was 24. The support of his family was amazing. Not many people will ever endure what they had to do to support him in living beyond his expectation. “Disabilities” affect more than just the individual that is physically challenged. They require the love, assistance and support of their families and friends. To this day I still make sure to deposit what I can in the boot for MDA and collect my sticker from the Firefighters. Each year they not only come closer to a cure, but the money raised also assists in sending children to camp.
Kelly lived across the street. She was run over by a tractor by her father. Even though she was paralyzed from the waist down, she was a powerful force. She would ride her wheelchair up and down a city block in a wheelie. Then, plop out of her chair and into the grass and watch the neighborhood boys take her chair and attempt to ride a wheelie in her chair at all. Nobody ever beat her record. Kelly was married and she and her husband started “Bear Steam Cleaning” which is still a successful business in Colorado. Every time I have hired them, they have had employees who care about their job and the service they provide. Kelly would be proud.
Neither Troy nor Kelly ever complained about their situations. They embraced life… I was so young in knowing them that I did not appreciate the gift they provided me but in my adult life I understand what remarkable individuals they were and how fortunate I was to know them.
My Uncle Harry and Aunt Helen were also very important foundations in my life that inspired me. My Uncle Harry was in WWII. He lost his right leg by stepping on a land mine. He never discussed his injury and I never knew his full story until he was in his 80’s. He had his prosthetic leg for so long that he had to have reconstructive surgery on his left ankle due to “wear and tear”. My mother, sister and I went out to Arizona for the surgery. That is when we found his scrapbook. My uncle was awarded the Purple Heart because he would not allow his troop to come to his aid. He knew they were at risk so he carefully backed himself out of the mine field to safety. The communication of the time was telegraph. My aunt was informed that he was in a hospital “stop”. No other detail. She waited for over a month before she knew where he was and if he was alive or dead. Had he allowed his troop to get him more quickly he would have only lost his foot. He ended up being a below the knee amputee because of the time it took him to retreat from the mine field. He recovered and went on about their lives only to discover that my aunt was unable to bear children. Due to the laws of the time, they were unable to adopt because of his “disability” (it did not matter that he was disabled due to serving our country). My aunt and uncle’s misfortune happened to be a benefit to my sisters and myself. They were an integral part of our lives as we grew up. They had a cabin in Netherland, Colorado. When we went to visit them, as children of a single parent household, we had the opportunity to be children. We played many games during our stay and their cabin was always filled with laughter. We were able to enjoy the black starlit sky and the sounds of the river flowing alongside the cabin. Skip rocks, hike and run around without a care. Again, never to hear a complaint from the problems they endured, but always praise at our manners and encouragement to follow our dreams and never doubt our intelligence and talents.
Throughout the year I have served on the board, I have had the opportunity to be a part of a group that is available to enrich people’s lives. I have met amazing individuals through the group and I am proud that I have been able to be a part since inception. I have heard the many stories that have brought our members together. Once again, I find I am so blessed to have so many amazing friends.
Learn more about Michelle here.
When I first became an amputee, I was tended to by my 2 sisters, both of whom live in other states, dropped everything to be with me, and were the moral and physical support I needed. As I healed and found that life truly does go on and that activities are really only limited by my mind, I developed a strange sense of humor, although I never was totally normal–how could I be as a high school teacher for over 30 years?
One day early in my prosthesis adventure, my sister Donna decided that we should go shopping at Kohl’s. Unfortunately, Donna has bad knees and was hobbling around when I suggested that I push her in the store wheelchair; she was in such pain that she agreed. Pushing her around the store, I pictured what we must look like and started laughing hysterically; she started to giggle, too. Then, I thought, “We’re laughing so hard that the salespeople will think that we’re stealing something.” So, I explained to the clerk at the fitting rooms why we were laughing and she just gave us a blank stare. So much for thinking that we were a spectacle!
Then, a few months later, I was visiting my other sister for her birthday when her back was giving her real problems. She, also, took me up on my offer to push her in a wheelchair around a hardware store. I said to her, “You know I’m going to get good mileage out of this.” She said to tell anyone I wanted, so I’m sharing the story with all of you!
The summer before my transition into middle school was the first time the word “cancer” belonged to me. The dull aching in my right shin had become a dizzying, double-vision inducing pain, that could no longer be attributed to the rate at which I was growing. But while deep down I knew it was something more than growing pangs, I was blindsided when they handed me the diagnosis of osteosarcoma – bone cancer. Though I wasn’t aware of this in that moment, this diagnosis would create a new narrative for me, one in which I defined myself as both ‘cancer survivor’ and ‘amputee’.
Though neither of those truths were easy to swallow as my own, being a cancer survivor sure went down easier than being an amputee. Overcoming cancer made me a hero, an inspiration, a survivor. But being an amputee? That put me in the dark and shameful place of being a cripple, disabled, broken. “Oh you can do anything, you’re alive” adults rejoiced, “She only has one leg” peers whispered. And for the over a decade after my amputation, the only thing I heard were those whispers, which very quickly became my own. And so, I became a ‘closet amputee’.
Being a ‘closet amputee’ is just how it sounds. I didn’t talk about it, I wished for it to be different every single day, I refused to accept it as my reality or to associate with any type of culture related to it. (Which, in retrospect, pretty difficult to do when like, 18% of you is robot…) It was unhealthy; it was limiting, and man, was it bad for my head and my heart.
The change started slowly, and while I know it started in me, it had a lot to do with a very special person who came into my life. He made me talk about it, he joked about it, put me on a motorcycle, a bicycle, pushed me past my point of comfort. I loved him for it, and sometimes I really, really didn’t like him for it. But either way, the door to my dark secret had been cracked, and someone actually loved me despite it, maybe even for it.
Pretty soon my internal narrative started to change, “Emily, you are an amputee. “ And while this shift in self-awareness felt less heavy, I still found myself wishing desperately that it wasn’t my reality. I could be a cancer survivor, but I why did I have to lose my leg?
And then all at once, over the period of the past two years, I fell comfortably and confidentially into acceptance. I moved to Denver, Colorado with that boy who filled me with confidence, and there I found an outpouring of resources and community for amputees. But in order to embrace and benefit from those resources and that community, I needed to face it: I was an amputee. And by that point, I was truly tired of limiting myself because I didn’t want to look different, I was ready to figure out how to start experiencing and enjoying all those activities my friends and family had the fortune of participating in.
I started with adaptive yoga under the instruction of Liza Morgan at PH7 Collective in The Highlands. It was mind-blowing, life-changing. I couldn’t believe something that made my mind and body feel this good existed, and that I had access to it! My lower back pain was quickly gone, my heart felt lighter and my stress levels flat lined.
A few months later, I accepted a position working in fundraising at a nonprofit called The Limb Preservation Foundation. I remember seeing the post for the position, reading through the requirements and thinking, “oh yeah, I’m definitely qualified for this” (I had received my undergraduate in nonprofit management and done fundraising and event planning in my past positions). But then, I visited their website and learned that the community they supported included cancer survivors and amputees. Woah, serendipitous.
I love my job for many reasons. I love fundraising. I love events. I love people. But I also love my job because every day I have the opportunity to connect with patients whose journeys I know on an intimate level, whose journeys I have lived as my own. And for them, they don’t see me being an amputee as a failure, as I did for so long. Being an amputee can make me a hero or an inspiration in their eyes, traits I thought only came with the cancer survivor side of things. I love my job because it makes me face, acknowledge and accept, every day, who I am. I am a cancer survivor. I lost my leg to save my life. I am an amputee.
Coming on with The Foundation also presented me with the opportunity to meet a lot of incredible people who were affiliated with orthopedics, bone cancer and amputees. One of those amazing people invited me to my first LIM359 event, and so I became involved with this incredible group of very secure, very capable individuals. A group I am proud to be a part of.
So a few months ago, when one my absolute favorite people from this group, jokingly and lovingly called me a closet amputee, I found myself thinking “girlfriend, you have no idea”. I have come so far since I lost my leg at the age of 11, but I am also truly excited to see what the future has in store for me. In the past two years I have learned to ride a bike, yoga and rock climbing – I can’t wait to see what else is out there that I haven’t discovered.
I am Emily Williams. At the age of 10 I was diagnosed with osteosarcoma. After three months of chemotherapy, my leg was amputated to remove the tumor and increase my likelihood for survival. After 8 more months of chemotherapy, I entered remission. I have been cancer free for 15 years. I am alive, I am a cancer survivor, I am an amputee, and I am a bad-ass. And so are you!
Learn more about Emily here.