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    What's New in Clubfoot
    Adam Burak

    Normalizing Expressing Your Emotions for Your Mental Health

    “Will Adam Burak please come down to the main office?” was a message I heard over the loudspeaker dozens of times while in elementary school. Still, it startled me and sent me into an anxious spiral. Heads turned, while stares of confusion and intrigue shook me to my core as I walked to the door. I knew where I was going, but no one else did. It was time for occupational therapy, a time that I dreaded, not because OT was difficult or was not beneficial, but because I would have to lie to my friends and peers in class when they asked where I went. I did not like lying, but I was so concerned about their opinions and ashamed of feeling different that I did not feel comfortable sharing anything about OT. Having the ability to share my negative emotions surrounding feeling different would have completely altered my feelings about attending OT. Rather than internalizing all of my doubts and insecurities, I could have shared the challenges I was experiencing and instead, received my friends support. I have come to realize that while growing up many people have similar experiences of feeling different and inferior to others. Therefore, I believe it is important to share my story. I feel a calling to help others open up about their feelings and share their own stories, in an effort to change the way individuals handle, share and think about their feelings and emotions. The narrative I created about myself was negative and began as soon as I was born. I was born with a left clubfoot. “A clubfoot is a deformity in which an infant’s foot is turned inward, often so severely that the bottom of the foot faces inward or even sideways” (Ortho Info, 1). As a result, I faced many challenges early in my life including learning to walk later than others, having difficulty walking, and having smaller and weaker left leg calf muscles compared to my right leg calf muscles. However, more challenging than the physical issues, were the emotional difficulties I experienced, such as feeling like there was something wrong with me. Hearing doctors say, “He may never play sports and may never walk correctly” caused an immense amount of emotional pain. As a kid still finding his place in the world and primarily wanting to fit in, these experiences had a strong effect on me and my self-image. My experience of feeling different and less than my peers increased due to another life event that rattled my self-image. When I was in fourth grade, I was diagnosed with ADHD and a visual-spatial learning disability. To address this challenge, I started seeing an organizational coach along with other support systems. The goal in receiving support was to provide additional learning and help me develop ways to deal with my developmental disability. I internalized my ADHD as bad and negative, and labeled myself as damaged. While I was always offered extra time for schoolwork or tests, I declined because I wanted to be treated the same as others. At the time, I did not understand how common it was to be diagnosed with a learning disability or ADHD because none of my peers shared any challenge they were experiencing. I believe that it wasn’t the learning difficulties I was going through or having ADHD that bothered me, but rather the fact that I felt different and inadequate. All the while, many of my peers were experiencing the same challenges unbeknownst to me. It is important to note that despite frequent feelings of inadequacy and alienation, I never told anyone how I felt while I experienced these intense emotions and feelings. I completely internalized my emotions for over 10 years. Because I never shared my experiences, I was never told that anyone was battling similar challenges and emotions. For many reading this, it will be the first time you learn in detail about the challenges that I faced early on in my life. It wasn’t until recently that I learned how to express my differences, transform them into self-love and self-acceptance, and use these differences positively. I believe that if we want to improve mental health issues and eliminate the stigma surrounding them, we need to normalize people expressing emotions and feelings — not hiding them. I believe the earlier in life that individuals can become open and express their emotions, the better for their mental health. I have learned firsthand how I would have benefited from being able to openly talk about my emotions, the things that upset me and the anxiety that kept me up at night. We must foster a safe space where all individuals can feel comfortable talking about their emotions and differences. This ability to be open and be accepted is a critical aspect in individuals’ development of a positive self-image and overall mental health. Expressing one’s true emotions is a key first step in their ability to overcome a challenge or adversity. Normalizing expressing their emotions and teaching kids to share their emotions should be no different than teaching them to go to the nurse’s office when they are physically sick or have an injured ankle, similar to any other life lesson kids are taught as they grow up. We currently address children with challenges to their emotions in a manner that shuts them down both in schools and in society. Many of the behaviors kids demonstrate and are punished for in school are attention-seeking behaviors caused by a desire to be liked and accepted — I know this because I did it myself. The fact that we punish children for their behavior does not address the cause of the behavior. Children would have better outcomes and better long-term success if we work to understand the causes of their negative behaviors and focus on addressing those causes. For me, being different was one of my biggest fears growing up. To be honest, I am different from others in many ways and knew this at an early age. The problem is that up until recently, I was frustrated and scared by these differences rather than grateful and accepting of them. I learned that being different meant there was something wrong with you and you should do all you can to eliminate these differences. I was never taught that having unique characteristics and different experiences is something to be proud of. If I was not told to embrace my differences and see their positive value, then how would you expect me to come to that conclusion myself as a child? The challenge I pose to you is to take a little bit of time to honestly check in with those around you on how they are doing emotionally. The past year has been one of the most challenging years of this generation. Starting a conversation to check in on how the people you love are doing and creating a space to have these honest and transparent conversations will be extremely beneficial to all involved. I know you will get so many positive takeaways from having these conversations, because I have personally experienced feeling better on a life-changing level after sharing my own emotions and challenges with others. I am writing a series of blogs centered around my life experiences surrounding mental health with the goal of normalizing individuals speaking about their struggles and trying to teach others what I have learned through these experiences. The next piece in my writing series will focus more specifically on what I tried to do in order to feel valued due to these differences and how my efforts affected me both positively and negatively. I hope you get something out of reading parts of my story and from the bottom of my heart, thank you for reading, it means the world to me. I am so grateful for your support.

    Community Voices

    My girl

    #Clubfoot A week ago we took my 5yr Daughter to hospital. She had surgery on both feet and is now in plaster casts and unable to walk for the next 8 weeks. The surgeon was already telling me she might need a second round of surgery next year.
    I am sad for her that she has to go through this. I am also sad when I think back to the boots and bar she had as a baby and how she used to scream when we put them on.
    All I hope is she can run and skip like her friends one day and live her life pain free.

    2 people are talking about this

    Best Gifts for Someone With Foot and Ankle Pain

    Ever find yourself sitting back with a cup of something yummy, congratulating yourself for finishing your holiday shopping, trying to ignore that itch that you might have forgotten someone? Then you remember. You totally forgot your Secret Santa pick! This year you picked your good friend with foot problems, such as chronic foot and ankle pain. You know they are public about their disorder, discuss it openly and would not mind a foot-centric gift. But what can you get? Well, this is the list for you! 1. Fuzzy socks with grips Who doesn’t like fuzzy? My Pick: Tipi Toe Women’s Cozy Microfiber Anti-Skid Soft Fuzzy Crew Socks 2. Massage oil and foot lotion After a long day on their feet, a person with foot disorders may experience foot and ankle pain, and can find a massage very comforting and therapeutic. My Picks: Relief Arnica Massage Oil, Bliss Aloe Leaf and Peppermint Foot Cream 3. Electrode muscle stimulator There are plenty of inexpensive models that activate the muscles, helping them relax and reduce chronic foot and ankle pain. My Pick: AUVON Rechargeable TENS Unit 4. A calendar with a foot of the month No, don’t get that. I was just checking to see if you were paying attention. But you could get them a subscription to John’s Crazy Socks’ Sock of the Month Club! 5. Leg warmers Low circulation can cause cold legs and feet. A nice set of leg warmers can be the snuggle your friend might just like. My Pick: TeeHee Women’s Fashion Leg Warmers I hope this quick list will help your last-minute shopping. As an adult with residual clubfeet disorders, I know I’m going to get myself all of this if my Secret Santa chooses to go with a gift card and more chocolate.  Happy Holidays to you all!

    Community Voices
    Community Voices

    Everything is fine and then it isn't

    I'm working. I'm in the groove. I'm feeling ok. My feet and ankles haven't bothered me all day. My knees aren't crackling. My back is strong. Then I stand. My ankle gives out, my knee tweaks, my back clenches. I have to take a breath. I have to collect my body. I have to grab the Advil before I no longer can move. This happens every single day. So now tell me how I'm supposed to judge how I feel from 1 to 10? Starting when? #Clubfoot #InvisibleDisability #1to10

    Community Voices

    Clubfoot (CTEV)

    Join the Clubfoot Research Foundation Forum on Facebook to learn more. we educate both medical professionals and the public.

    1 person is talking about this
    Community Voices

    Failing Feet

    I have a rare musculoskeletal birth defect which has caused a number of joint surgeries. I thought I was used to my crazy, unique rarely understood limitations.
    Suddenly my “good” foot — as opposed to the small, clubfoot other foot— has become numb, pins & needles feelings. I’ve fallen on our concrete porch twice over the last 2 days.
    Now I’m afraid to even try to walk. I’m not even sure if continuing to trust my spine surgeon, assuming the epidural he gave will eventually kick in to help., is the right choice. I’m tired of blindly trusting orthopedic surgeons who only want to solve a small, minuscule part of my problems and I’m left to blindly coordinate complex medical conditions & treatments with limited medical information.

    4 people are talking about this
    Emma Carroll

    We Need to Re-Evaluate Treatment of Cerebral Palsy in Adults

    I drive my electric wheelchair to the registration desk of the clinic check-in window, low on sleep and fatigued from spasms the night before. The secretary greets me with a smile. I wonder if she notices the dark bags under my eyes. I’m here to see my physiatrist, a doctor who specializes in treating those with disabilities. She’s but one of the many members on my team for the treatment of my cerebral palsy; others range from orthopedic surgery to neurology and neurosurgery, pain management and psychology. “Name?” “Emma Carroll. C-A-R-R-O-L.L. 3/14/94.” I spell out my name for the umpteenth time and give my birthday as if on autopilot. “No changes in address or phone number.” She checks me in, hands me my intake paperwork, and I promptly take a seat in front of the large flat screen TV in the waiting room. I look down and read the questions attached to the clipboard. “List the reason why you’re here today.” I scribble the words “Botox and phenol injections” as a Hail Mary of sorts, hoping my doctor will agree that it’s a good next step to relieve me from the dramatic loss of function the increase in muscle tone has caused. In truth, though, I’m in denial. When my name is called, I go to my clinic room. After a few minutes, my doctor walks in. She asks me how I’m doing, and I’m honest. I have been absolutely terrible. The increased tightness in my legs has made it nearly impossible to weight bear without pain — even passively in my stander — and the muscle spasms in my hips and legs take my breath away. I ask about the possibility of injections, knowing full well that we attempted aggressive Botox in the previous months without significant benefit, and the effect is temporary. At first, she agrees, but then pauses. “Can I examine you?” I lay in the hospital bed in the corner of the room, and while she assesses my range of motion in all of my extremities, I can read the perplexity in her face. As she flexes my right leg — up, down, and then side to side — she reaffirms what I already knew to be true. “That is really tight.” I am lifted back into my wheelchair using the Hoyer lift on the wall, and then she says something I didn’t expect. “I really think a Baclofen pump would be for the best. I’m in this for the long term.” Baclofen is a drug used almost exclusively in cerebral palsy, multiple sclerosis, and spinal cord injury patients for the treatment of spasticity. Although I take the medication orally — and at very high doses — unbeknownst to me, changes were happening “deep in the brain” in regards to my muscle tone. She explained that while Botox and phenol may work in the short term, it wasn’t a long term solution, and unfortunately, one with “ebbs and flows.” Without pump placement — which would allow a more effective administration of the drug directly into my spine, but is a complex procedure due to having to drill through my fused spine to access my spinal cord — I’d lose even more physical ability, have worsened chronic pain, and have even more instances of orthopedic deformity which would require additional surgery. I sat there stunned, unable to form words. This is supposed to be a “non-progressive” disorder. What do you mean it will get worse? After all, we tried placing a pump when I was younger. I had two massive overdoses and nearly died. While there’s a part of me that’s terrified to repeat pump placement due to what happened in the past, I know it’s necessary. At that moment, I realized maybe cerebral palsy isn’t “non-progressive” after all. I’ve already had multiple surgeries for my hip dysplasia, had nearly my entire spine — and parts of my pelvis — fused to stop the progression of neuromuscular scoliosis; as well as a procedure to reconstruct my foot and ankle due to clubfoot, among other surgeries. These comorbidities occurred both in childhood and in adulthood. Unfortunately, in terms of my care, I’m largely the exception, not the rule. My clinic operates as an extension of a children’s hospital — one of the world’s most renowned for the treatment of CP — and allows for continuity of care for adults. Unlike me, most patients lose their specialists once they reach the age of 18. Considering that research says cerebral palsy patients experience premature aging, with many who are ambulatory losing their ability to walk as they get older, this is something we desperately need to re-evaluate. Too many adults with the condition are getting left behind. As someone who has a more severe form of CP, has never been able to walk and had multiple other health problems because of it, I shudder to think where I would be if I didn’t have an excellent multi-disciplinary team. I truly believe my model of care should be the rule, not the exception, and that more research needs to be done in regards to the adult cerebral palsy population. More and more of us are surviving into adulthood than ever before, and rather than being brushed aside, it’s time all of us — not just a lucky few — get the care that we deserve.