Limb Amputation

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    Zimra Vigoda

    Learning to Let Go as the Mama Bear of a Grown Son With a Disability

    February 2022 “OK, Mom, here is the surprise, but close your eyes first.” “OK.” “Open them,” he said. I did and what I saw made me cry. My 19-year-old son, just back from Germany, got himself a tattoo of a Mama Bear carrying her prosthetic-wearing Baby Bear. It’s been a tough year for both of us with respect to our mother-son relationship but rarely, in my nearly quarter of a century of parenting, did I feel such emotion as in that moment. September 2021 “I’m not going back to college,” he said. My throat tightened, my eyes involuntarily filled with tears, and I was overwhelmed by a deep sense of sadness that simultaneously controlled and embarrassed me. I looked away so he wouldn’t see but, of course, he did, and it enraged him. “I’m finished living other people’s dreams… your dreams,” he hurled at me. A year ago, Amit was considered by many to be a superstar; a freshman on a D1 wheelchair basketball scholarship at the University of Texas at Arlington. He’d been awarded the NWBA’s 2020-2021 MVP and managed to finish the year with decent grades. My mind and Texas, however, were two different playing fields. I had invested 18 years of my life doing what I swore I would do the day he was born, when the first orthopedic surgeon that glanced at his bizarre x-rays proclaimed, “I hope he has a good brain because an athlete he will never be.” That day, my life pivoted and my only authentic mission was to ensure that this child of mine, who never asked to be conceived or born, would have every opportunity to live a good life. Amit made his earthly debut in August 2002, with a rare orthopedic condition in which his lower right leg was made up of cysts and chock full of fractures. Similar to many parents (and mothers in particular) of children with disabilities with the available emotional and financial means, I became “Mama Bear,” placing my career, my marriage, and even my other children and their needs on the sidelines. I worked mommy jobs and assumed that my other children, who were three and four years older than him, would “understand” that most of my attention went almost exclusively to their baby brother with the bum leg. My main focus became advocating for Amit in every possible setting and situation. I became an expert at navigating medical, governmental, and educational institutions – first in Israel and then in California where we spent three years between 2012-2015 and where Amit decided to amputate his leg after numerous failed limb salvaging surgeries in Israel. In California, he discovered wheelchair basketball and began his metamorphosis from “disability” to “expert.” Simultaneously, I discovered blogging as a form of self-therapy. My first blog, about our family’s decision to amputate, went viral and Amit transformed from a little kid with a big disability to a celebrity, giving interviews for national and international media outlets After the amputation and liberated from the fear of injuring and “losing his leg,” Amit went full speed ahead in the wheelchair basketball arena and found his power and his voice. In 2015, we returned to Israel and Amit continued to develop and excel at the sport, playing in the top league and on the Israeli U23 national team. It was clear for us, even from the age of 14, that he was on track to study in the States on a wheelchair basketball scholarship. I was convinced that this route was his dream and at the time, maybe it was. It was certainly mine. He went to a summer camp at the University of Missouri when he was 15 and at 17 accepted a spot on the Movin’ Mavs at UTA. While his friends in Israel were enlisting in the IDF or beginning their year of pre-army service, Amit headed out on the road less taken, and three weeks before his 18th birthday, boarded a plane to launch his unique college adventure. I was thrilled, blogging about how “victorious” I felt defying the odds. I thought our story would be a guiding point for other parents of children with diverse disabilities. That was then, this is now, as they say. Today, I understand that I was naïve and short-sighted. Amit’s journey to UTA was not the end of the story but rather, another chapter in a complicated reality. As a mother of two other young adults, I understand how challenging the transition from adolescence to adulthood is for both parent and child. Yet, despite loads of introspection and blogging, I was unprepared for the added complexity of this transition involving raising a child who, for lack of a better term, became my “calling” and life’s work. This story is still evolving, but I do hope that parents of young children with disabilities learn from my experience. Amit has left UTA and is in Germany playing professionally this season. His next steps remain a mystery and are his alone. The lessons I’ve learned so far are true for any child and any parent, but hold even truer for parents of children with disabilities where the natural instinct is to protect, or rather, to overprotect. Letting go is hard, but I trust Amit and recognize that my perceived “investment” is my issue and not his. Looking back, I don’t see what I would’ve done differently. Mama Bears are born together with their Baby Bears. Instinctually, I could not have made different choices. The minute I held that sweet little baby with the gigantic cast, I knew that I would do whatever was in my power to help him be whoever HE wants to be.

    Jaime Cline

    We Won't Put a Trigger Warning on Our Daughter With a Disability

    I remember being at the pool this summer and my daughter, Callie went to take off her prosthetic leg. She doesn’t swim in it (obviously) and I heard the mom on the chair next to me mutter under her breath “Geez, a little warning would be nice.”I glanced over at her and she had a grossed-out look on her face. She made the motion to cover her kid’s eyes — as if seeing Callie’s leg without the prosthetic on was triggering for her and her kids. The thing is… we will never give a trigger warning for Callie’s residual limb. Ever. Trigger warnings are for things that are traumatic, abusive, and painful. Extremely hard things that people have been through. Not a bit of discomfort or uneasiness because YOU aren’t used to being around bodies that look different than your own. We get that it might be weird for you. Maybe it’s something that you’re not used to or it makes you a bit uncomfortable.But Callie’s limb is not traumatic or scary — it’s simply different, unique, and unlike what you might be used to seeing in your world. As a disabled person, she doesn’t owe anyone a warning for her presence, existence, or the way she looks. We would never ask her to make someone else feel more comfortable with her disability — that responsibility lies solely with them. We will always encourage Callie to bravely be herself — regardless of anyone else’s comfort level. Their reactions are evidence that there is some internal work that needs to be done — highlighting things that need to be explored, immersed in, introduced to and things to be healed. And that is on them.

    Community Voices

    Quick Tip Thursday: Keep Your Socks Loose By Not Wearing Tight Socks Or Elastic Stockings

    <p>Quick Tip Thursday: Keep Your Socks Loose By Not Wearing Tight Socks Or Elastic Stockings</p>
    Megan Liang

    Seeking Therapy as an Asian-American Childhood Cancer Survivor

    A few months ago, I hung up the phone and sighed in defeat for what felt like the hundredth time. Since the end of 2020, I have been on the search for a therapist for the first time in my life. At this point, I had repeated and memorized the summary of the past 26 years of my life: “I was diagnosed with osteosarcoma at the age of 5, and they later had to amputate my leg at the age of 6. I know I have struggled with anxiety, and I am pretty sure that my childhood history with cancer has caused me some form of PTSD. I would also like to work with someone who also has a cultural understanding of growing up as an Asian-American. So… do you think that we can work together?” You might be wondering: why was I just starting to look for help? The answer is easy: I didn’t think I needed it. Growing up, I thought I was pretty lucky: I beat cancer, I only lost one leg (and am still pretty mobile with my prosthetic leg), and I am now in good physical health. I could feel my privilege of being alive and beating cancer when I saw so many friends and family like me go through cancer recurrence or even lose their battle against cancer. As a childhood cancer survivor and amputee, I have always felt pretty self-conscious of my medical history and my visible disability. The conversations with strangers always go the same way: “How did you lose your leg?”“Cancer?! At that age? You poor thing!”“I’m so sorry for your loss.” While most people mean well, I have learned that there is a very clear difference between sympathy and empathy. Honestly, it just makes me laugh sometimes. “I’m sorry for your loss?” I mean, my residual left limb thanks you for expressing your deep compassion for its lost other half; otherwise, please save that for someone else. As you can probably tell, I tend to resort to humor or sarcasm as a coping mechanism. It’s funny and a bit sad when you think about it; whenever I feel uncomfortable about people staring at my leg or feeling sorry for me, I will make a joke or just internalize it to make sure that they were comfortable and didn’t feel awkward, disregarding how it may have made me feel. I’ll be frank: I am 100% aware of when people are looking at me and my leg, and I am uncomfortable 100% of the time they are looking at me. I can see when adults pull their children away from me, thinking that it’s rude to ask (it’s not at all; I am happy to answer all of your kids’ questions so we can normalize disabilities in conversations). I cringe every time someone does a double-take at my leg. It’s been 20 years since I became an amputee, and it hasn’t gotten easier, but I’ve learned to do a pretty good job at hiding my reactions. It took me a very long time to even realize that I was allowed to seek help. Mental health isn’t a common topic in Asian households. Our family certainly cared for each other’s health and wellbeing, but the topic of mental health and how we were feeling never really came up. After my diagnosis and amputation, “how are you feeling” meant “how are you doing physically?” If something was bothering me mentally, I didn’t know how to process it, because I didn’t even know what it was and what it meant. I eventually learned to shrug it off and internalize my feelings, as it felt like it wasn’t a big deal and I needed to be grateful for even having the option of feeling any sort of way. When I was growing up, I learned that my name in Chinese roughly translated to “Sunshine.” I remember my parents telling me what it meant, and proudly saying how fitting it was, considering I was always so positive and upbeat despite everything that I had been through. I always had mixed feelings about my Chinese name growing up. I have had people make fun of the pronunciation when I would finally share it; I have had people make fun of my middle name when they saw it on official school documents (my middle name is actually the pronunciation of my Chinese “first name”). When I heard that my name meant something so positive and so warm, I found a new pride in it; however, with that pride, I took the translation almost too seriously. I was already a generally positive person and already wanted to ensure that my peers were not uncomfortable with my visible disability. Now, I felt some sort of obligation to live up to my given name and continue to spread positivity, even if I wasn’t feeling it. There were a lot of external pressures outside of my family environment that made it difficult to seek help. The expectations and pre-established beliefs created by the Model Minority Myth made me feel as if I was held to a higher standard than my non-Asian peers. These dangerous stereotypes portray Asian-Americans as “model minorities” — highly intelligent in academic settings and successful in their careers. Growing up, academically, I didn’t fit the “model minority” stereotype; I was just average at all subjects. In addition, I didn’t even meet others’ standards physically; I was missing one leg and could barely participate in sports that required walking or running. Addressing my mental health issues on top of my misfit into societal standards just made me feel even more weak; Megan “Sunshine” Liang it is. It has taken me practically 20 years to realize that it’s OK to not be OK, even despite how much you’ve braved and overcome. It took immersing myself into a community of amputees to learn that my experiences and feelings were valid and not unique to myself. It took reading stories from other Asian-Americans who also did not fit in the mold to realize that I didn’t have to fit any societal standards that others tried to put on me. Now, I always talk about the importance of community to the point that I sound like a broken record. Having a community can do wonders for validating not only the experiences that you may find unique to your disability, but the feelings you might have internalized or even vocalized about existing as a person with a disability. It felt even sweeter when I joined Asian-Americans with Disabilities Initiative, or AADI, this summer. Being a part of this community that understands your entire experience and feelings of having multiple marginalized identities is so important. My search for the right therapist continues, but I oddly feel more at peace with myself than ever. It’s OK to not be OK, and it’s OK for you to take time to realize that. In the meantime, I’m going to work on finding a more authentic definition of “Sunshine” and try to embrace it as I move forward.

    Community Voices
    Community Voices
    Jaime Cline

    Please Don't Say 'I'm Sorry' When a Child Has a Disability

    “I’m so sorry.” That is usually what we hear when we share the complexity of Callie’s medical situation. When she was first born, those were some of the first words we heard from doctors, nurses, specialists, and counselors. “I’m sorry.” But doesn’t saying “I’m sorry” in response to a new parent of a child with a disability lay a tragic foundation for their life? Doesn’t speaking the words over a new baby and within a few hours of the miracle of their birth cast a shadow over the event? Doesn’t that take away those first few hours of joy, bliss, empowerment, love, accomplishment, and togetherness that a new family should feel? These should be the sweetest moments, not the ones a parent looks back on in pain. Let’s not start the conversation about a child’s disability with “I’m sorry.” Looking back, I can see that they meant well, but it also brings up a lot of questions. Did they think that because of her diagnosis, Callie would not amount to “as much” as an able-bodied person? Doesn’t saying “I’m sorry” convey that her diagnosis was bad? Did they think her life was less valuable now? Doesn’t that set a very low bar for her? Would that continue through her life? Was that really how society saw people with disabilities? Did they think that with this diagnosis she would be considered less worthy? And how did they know that she would lead a lesser life simply because she was different? What exactly were they sorry for? The thing is… Nothing positive ever follows the phrase “I’m sorry.” “I’m sorry” is a phrase followed only by something negative. In addition to mourning the loss of our plans and expectations, now we were had to brace ourselves for more bad news.  As time went on, we realized the diagnosis wasn’t bad, but I wish we would have had that insight and opportunity from the beginning. In those early moments of life, we don’t know what lays ahead for our little ones. And who are we to project a life of “tragedy and hopelessness” onto someone for being born different? Can we shift the perspective to the infinite possibilities instead of the loss? Can we try to look at all the ways they are perfectly and beautifully made instead? Can we assume competence and achievement? Can we treat this as a gift with endless amazing opportunities? Can we revel in the miracle of a brand new life? I think we can.

    Deborah Shuck

    Parents, It's OK to Let Your Kids Ask About My Prosthetic Leg

    I am in a store, any store. A child sees my leg and is interested. After all, I am inviting curiosity by wearing shorts. Out of the corner of my eye, I watch to see what happens while I shop. The child points, the mother says, “Don’t do that! It’s rude!” But she doesn’t explain. She doesn’t explain my leg to the child or why it is rude to point. The child is still asking her about my leg and she is getting angrier. He still doesn’t understand why she is so angry. He is just being curious. She yanks at his arm to pull him away. To save his arm from further damage, I walk toward the little boy and I explain: “When I was born, I didn’t get two legs like you. Mine were different and the doctors had to fix one so that I could have a leg like this.” I point to my prosthesis. “The great part about it is that this leg is special, it has a computer inside.” I take the battery out and show them that the battery is just like one that operates their toys, cameras, computers at home etc. They love it. They think that is the coolest part. They usually want one just like it. I explain to them first that it doesn’t hurt and that I can do things just like them, but I may have to do them a little differently. I tell them that I snow ski, but I have to do it on one leg with these little skis that are on crutches. I tell them that I scuba dive, I just do it without my leg on. I tell them that without the computer, I might not be able to ride a bicycle as well, so this makes my life a lot better. That is about as long as a 6-year-old attention span lasts, but they have had an explanation. Now they know that people can be different, but different can also be a good thing.

    Jaime Cline

    To My Daughter With a Limb Difference: I See You

    I see you, baby girl. I see you taking that first brave step. I see you glancing quickly to watch people’s faces when they look at your prosthetic leg. I see you evaluating whether they are going to meet your eyes or continue to stare. I see you get that tiny little smile ready, your hand half-raised to wave at them. I see your shoulders slump when they make a terrible face. I see you constantly navigating your terrain, trying to find a sure foothold, watching out for a slight lip in the pavement, a hole you might not see. I see you traversing a world that is not built for you, running a race that you aren’t fully equipped to run but never even losing stride. I see you looking at other kids’ legs, watching them run, jump, dance, play, hop and live with abandon.  I see that moment of cloudiness in your eyes before you lift your chin and continue on. I see you jumping wholeheartedly into each new endeavor, never allowing your differences to stop you from trying something new. I see you adapting, making things manageable for you and making a safe haven for others to live a life without limits. I see you advocating, championing for the underdog, the runt of the litter, and the lost cause. You see a little bit of yourself in them, I know. I see the pain on your face when kids say your leg looks weird or gross. I see the toll it takes on you. I see you questioning how kids can be so mean. I also see that steely look in your eye because you won’t ever let them see you cry, shuttering yourself in a protective armor. I see you trying to hide your prosthetic leg, tucking it behind a blanket or standing behind other kids when you don’t feel secure. I see you continue to stand back up, time and time again. No matter how many times you’ve been knocked down, you just keep standing up. That fire is forged in your soul.  You will not be defeated. I see you feel big. You feel your feelings and aren’t afraid to lean into them. You are comfortable experiencing unbridled joys and can safely allow yourself to sit with your grief, understanding they both can comfortably share space in your life. I see you growing up way too quickly, forced by fate to handle way too much for someone your age. I see you talking to your doctors and your specialists. You are well versed in your medical history and are very much your own advocate. You have an opinion on your care plan and you make sure you voice it. I see you playing video games, comfortable in a virtual world where you can compete on an even playing field. There aren’t any disabilities there and I believe that’s why you love it. I see you fiercely fighting for your independence, wanting to do everything for yourself just to prove them wrong.  Wanting to show those that doubted you, that told us not to get our hopes up, exactly what you are made of. I see how you are comfortable with your scar from your open-heart surgery. You see it as a battle wound and not where you lost the war. It’s where you picked up your sword and fought. I see you questioning God, questioning because you don’t understand sometimes why He picked this life for you. I see you feel conflicted because you know you are strong enough to handle it but still heartbroken that it’s you that has to go through so much. I see you responding with grace when strangers ask you questions about your prosthetic.  You always take the time to talk to them because you know it’s a good time to break down biases, stereotypes and ignorance. You do it when you are tired, when you don’t feel like it, when you really just want to be left alone. All in hopes of making the world a more inclusive place for people like you. I see you changing the world. Changing the face of beauty. Reimagining the definition of strong. Shattering glass ceilings. Inspiring everyone that meets you. Touching the lives of so many. Coming into your own. Quick with praise, a hug, and reassurance when someone has a bad day. Secure in who you are but also constantly pushing yourself to be kinder, more compassionate, and better version of yourself. I see you… just getting started.

    Jaime Cline

    10 Things I Wish You Knew About My Daughter With Disabilities

    1. Please don’t stare. A smile and a wave is much better. 2. Callie can do whatever she wants to do — swimming, horseback riding, dancing. She just might need an adaptation or it might look a little different. She still can participate to the fullest of her ability. 3. Her prosthetic leg is not the coolest thing about her. 4. Her prosthetic leg is pretty cool-looking, though. 5. We wish we saw more people like Callie in media, books, films, ads and on TV. 6. It’s extremely expensive and time-consuming to manage all of her healthcare needs. 7. She’s worth every penny. 8. We don’t want your pity. We would love your compassion, acceptance and empathy though. 9. We would love your help championing for people like Callie. Allies are amazing. 10. The disability is not the issue. The accessibility and the lack of adaptations are.