My Story

My struggle with Perthes Disease while growing up in a clinically dysfunctional family

"Many years later, 11 hrs and 165 miles down the road, I had just cycled a crossed the entirety of my home state in single day. It was a deep satisfaction that can only come from scratching a childhood dream. It was the same satisfaction that carried me home the first time I flew an airplane by myself over my home state of Indiana."

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Riding back home to our small northern Indiana town after seeing a specialist at Riley’s Children’s hospital in the big city of Indianapolis is when my new reality started to set in. The doctor was looking for kids younger than 9 years of age with a well intact hip, still mostly round, and the child would have to be disciplined to not put weight on the affected leg and to do specific non-weight bearing exercises multiple times a day, every day for an entire year. The alternative was a total hip replacement. Should the treatment not be successful, a total hip replacement would happen anyway. The thought was overwhelming but at least there were answers, at least my parents believed me now. Everyday would be crutches and exercises. Every so often was an x-ray to check for good or bad news. I was a very active 8 year old boy and my physical world quickly turned non-active nearly overnight. A physical existence to a cerebral one. This exact morning came nearly half a year earlier when I woke up one morning. The day prior, I had been playing with friends and on this day I woke up with lots of pain in my hip and I couldn’t walk correctly anymore. My body just didn’t work anymore. This is really the starting place of my struggle with Perthes. This day, just like the start of any other day, was the exact day it started. It was day one and I didn’t even know it. Looking back, I had no idea what the future held for me and I’m glad it didn’t.  


I would go on to see many doctors in the span of nearly 6 months before a diagnoses and method of treatment came. I would have to deal with one parent consistently not believing me and accusing me of lying while the other parent believed me sometimes and on other occasions not. I sat out a lot of activities while I watched my friends play outside.


 In time, I would actually adapt and would learn how to run on crutches while still not putting any weight on my leg. I turned to books like Robinson Crusoe, Treasure Island, and my all time favorite, the ultimate story of adventure and survival, Hugh Glass-Mountain man. Reading was a huge part of my mental survival. I was struggling to survive on my own unchosen adventure and it brought comfort knowing that others have suffered far worse and survived. These books took my mind to places that my body couldn’t go. I would often sit outside and stare at the sky for hours. I’d watch the air planes fly above me and wonder who they were, where they were going, and if they had room for one more. The night sky was always the best however and endlessly full of wonder and mystery. For the first time in my life, I focused on my studies and developed an insatiable appetite for all things science and history. I dreamt of flying airplanes just like I had watched in the sky above me and going into space someday just like my fellow hoosier hero, Gus Grissom. I also dreamed to ride my bike as far and as fast as I could. Little did I know, the finish line is never where it seems to be when it comes to trying to escape and overcome. I would have to learn how to walk and run again after not doing so for a year. It wouldn’t be a black and white, success versus failure, type of picture as things rarely are. 


After a years time and another trip to Rileys children’s hospital, I crutched my way in to the doctor’s office to find out what my fate would be. After an X-ray and a few tests, the doctor declared the treatment was a success. He said for me to leave the crutches and walk down the hall. For the first time in over a year, this now 9 3/4s boy took his first steps and nearly fell right on his face. With a strong limp, a weak atrophied leg, and in newborn baby deer fashion, pending a complete building collapse, there wasn’t anything that was going to stop me from reaching the end of that hallway. A smile on my face and joy in my heart…these legs could walk again. 



I’m a lucky one. Despite advances in treatment for Legg Calve Perthes, children are in wheel chairs, have full leg braces to keep their hip stable, and can have such terrible pain that they need to be medicated. Children can be in braces for up to 3 years, have to have multiple surgeries, or worst case, a total hip replacement.


Being diagnosed and having to deal with Legge Calve Perthes Disease is one of hardest things I’ve ever had to go through but was nothing compared to growing up in clinically dysfunctional family.     


Many years later, 11 hrs and 165 miles down the road, I had just cycled a crossed the entirety of my home state in single day. It was a deep satisfaction that can only come from scratching a childhood dream. It was the same satisfaction that carried me home the first time I flew an airplane by myself over my home state of Indiana. 


A huge part of my story involves not only being diagnosed with Legge Calve Perthes Disease but doing so within the strong, isolated, trauma inflecting confines of a dysfunctional family. I think it’s really important to define what a clinically dysfunctional family is prior to the short stories. It’s a term that is very commonly misused and tossed about in society. I find the definition and examples below to give a very limited but accurate glimpse into what it was like to grow up in a dysfunctional family. 


 Dysfunctional Family 


A dysfunction family is one in which conflict, misbehavior, and often child neglect or abuse (emotional, physical, or verbal) on the part of individual parents occur continuously and regularly. Children grow up in such families with the understanding that such a situation is normal. Dysfunctional families are primarily a result of two adults, one overtly abusive and the other codependent, and may also be affected by addictions (such as drugs including alcohol), and/or by a parent(s) having an untreated mental illness. The codependent parent will often lie compulsively as a means to gain power from manipulation and continue to play the victim role as often viewed by friends and family. In some cases, the dominant parent will abuse mentally or physically or neglect their children and the codependent parent will not object, misleading a child to assume blame or guilt.


A few examples are below:

  • One or both parents have addictions or compulsions (e.g., drugs, alcohol) that have strong influences on family members. 

  • The abusive parent will have explosive outbursts which the children live in fear of (walking on eggs shells)

  • One or both parents exploit the children and treat them as possessions whose primary purpose is to respond to the physical and/or emotional needs of adults (e.g., protecting a parent or cheering up one who is depressed).

  • One or both parents fail to provide their children with adequate emotional support.

  • One or both parents exert a strong authoritarian control over the children.

  • Parents are inappropriately distant and uninvolved with their children. Children have received no guidelines or structure.

  • Children take on adult responsibilities from an early age

  • One or both parents will talk negatively about other family members or talk negatively to other family members about their children.








Below are some short stories about my struggle with Perthes Disease and growing up in a clinically dysfunctional Family. 




Short Stories I


“Here I meditated nothing but my escape, and what method I might take to effect it, but found no way that had the least probability in it: - Robinson Crusoe


I had seen a handful of doctors by this time. I hadn’t been able to run nor walk at all without a really bad painful limp. The longer the distance the worse the limp and pain would grow. The first doctor thought it was a pulled hamstring which was common in my active youth. A few weeks would pass and things continued to get worse. Another doctor visit. The second doctor didn’t know what was wrong and didn’t have any answers. Another few weeks pass by and things get worse…again. Yet another doctor and another suggestion. This process had gone on for months now. This is just a bad pulled muscle or something I would tell myself. I can heal from this I would often tell myself. My body is tough as it had proven to be so from the countless other injuries it had quickly healed from in the past. 


One evening I was sitting on my bed in my room and I must have been talking with my mother about my hip hurting. My father suddenly appeared and started screaming at me from the door way. 


My father would often have explosive fits of anger which caused the family to live in fear and to feel like we were walking on eggshells our whole lives. Fear was routinely present in our daily lives growing up. The fear operated on a schedule. It started 1 hr before my dad would come home from work. The fear would change my mom and she would become erratic, visibly stressed, and would no longer be present. She was thinking about the future, the place where fear and anxiety thrive. She would be thinking about when my dad arrived and my sister and I would lose that precious moment when mom was able to be present and be herself. Mom would often voice her thoughts about how terrible it was that dad was coming home and for him to even be alive for that matter. It was a common occasion for my mom to tell my sister and I that some day soon my father will have a heart attack and die. Everything will be better after that. 

No one could possibly ever know when my father would just explode. It happened at family events, restaurants, baseball games, pretty much anywhere seemed to be on limits. You never knew if you were going to be the target or not. The only thing that could prevent or calm him down was getting high. It seemed to be the only thing that prevented one his tirades which is why drugs were always in bountiful supply and used by both of my parents every single day for as far back as my memory can go. My mom, doing damage control or better known as gaslighting, would minimize the event by lying about the details of it in an attempt to actually change the reality of my dads behavior. Fights were plentiful and it was impossible to know when one fight ended and another begin since there wasn’t ever any closure on the last fight. So, one would naturally believe that the previous fight was still being waged. You had to be on guard all the time because of it. 


He was so angry he was partially crying as he screamed his words at me. “You’re faking it and you’re a lair! You’re just doing this to get attention!” He yelled at Mom to leave me alone and to stop giving me attention. She did. She silently got up with her head down and joined his side as my father continued to berate me. 


His anger, mental, and verbal abuse was a constant growing up but this struck a lot deeper. My sister and I were very accustom to “walking on eggshells” and we would continue to be helplessly accustomed to it well into our adult lives. My dad would use this kind of fear as a tactic of control and it was effective! So effective that it not only worked on us but others as well. It worked on other family members that saw the abuse first hand but was too fearful to step in and say anything.   


As he slammed the door to go watch TV with my mom, I sobbed on my bed in sadness, helplessness, and utter despair. I could barley walk and I absolutely knew something was wrong with my body. The pain told me so. The only people that could help me didn’t believe me. I knew I was in a hole and no degree of thinking or problem solving would fix it as it had done in the past. I couldn’t do anything. I turned to my recently turned 10 year old sister located just a room down from me. 


My sister and I have a special bond that was born out more out of necessity of growing up in a clinically dysfunctional family. We knew from our first memories that our family was different and wasn’t like the other families. Fear was present nearly every day in our lives growing up and having someone with you in the trenches made all the difference. We would often pass notes back and forth from our manufactured homes walls which was ever so slightly bowed. Just enough to where, with a bit of technique and at the right spot, there was just enough room for a piece of paper to pass through. 

Fights were bountiful and it was impossible to know when one fight ended and other begin since closure didn’t happen. You had to be on guard all the time because of it.


We passed many notes on that night. My sister believed me. She always did. She helped put me back together and gave me enough strength and hope to make it until the next the point. We were in this together, her and I, after all. Ultimately, our sibling squabbles could always be easily sidelined when it was needed and it was needed more than ever on this day. As far as my 8 year old world reached, as far as I knew, my sister was the only person in the world that believed me and that simple fact gave me hope. Moving forward, with the exception of my sister, I knew I was alone.


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Short Stories II

“Baseball was life and I was good at it” - The Sandlot


After a month or so of having undiagnosed Perthes disease and a few different doctors visited, it was nearly baseball season. I loved baseball more than anything else in the entire world growing up and I was damn good at it too. I had been throwing a baseball since I was 3 or 4 and these would become some of my favorite memories with my mother. I had one parent that would come and go in cycles of believing me, while the other parent was very open about not believing me. My dad had even gone so far as to call me a liar and belittle me. My father accused me of faking it to get attention. I suppose that baseball was a litmus test for both of my parents and maybe even myself. Was I actually sick? Was I faking it? Why couldn’t I just walk this thing off? I’ll try harder tomorrow I’d often say to myself when I couldn’t find solutions for todays problems.


 My mom took me to meet the Coach at the baseball diamonds which were located in the small town of Mentone, Indiana. 

Mentone is a true quintessential small town of Americana, where the pride of the town was the worlds largest (fake) egg which sat in a Banks parking lot. The other highlight of the town besides the library, was a little family owned grocery store, back when that was actually a thing. We made the short drive from our trailer which was located near an even smaller town called Burkett. Burkett was so small town Americana that it would be difficult to believe it ever once was even a town if it weren’t for the few aging weathered buildings that make up the “town” which told their tales of what once was. I don’t believe much has changed since who knows when and I doubt much has changed since. Its hard to imagine those few small abandon “downtown” buildings ever looking other than what they currently did. There was a small elementary school which was the focal point and life center in Burkett. This is where my sister and I went to school. One teacher that taught everything per class and class rooms about the size of 20 or so and went from Kindergarten to 5th grade. 

    

When we arrived at the ball diamonds, I remember limping out to the field and talking with my Mom and my Coach. I was trying to convince them that I could still play, that my leg would get better and maybe even tomorrow it would be good to go. 


I certainly didn’t accept in any way that I was injured. I was convinced if I just tried a little harder, I could out run this thing. After all, I had already been to a few doctors and no one knew what was wrong, if anything. Growing pains one said, it was a pulled hamstring another said. One Doctor said nothing was wrong me at all while another said to just be on crutches for a few weeks and see what that did. Being an extremely active boy, I had often pulled muscles growing up which would put me on crutches for a few weeks. My dad would fight my mom tooth and nail to keep us kids out the doctors for money reasons which was always a major concern, one in which we were made well privy to when we were growing up. If my mom stood her ground, after a long enough battle, we’d go to the hospital.  


So, I’m sure by this time I was nearing my end of going to doctors especially since my father already thought I was lying and said it to me on more than one occasion. My mother would typically have to fight rather hard to get my sister or I medical attention although my sister rarely needed. I’m thankful it was nearly always me getting injured growing up and not my sister. If a child is mostly unsupervised growing up, it’s rather easy to get hurt and get hurt often. 


Being a northern Indiana boy and growing up in a strange diverse climate of humid 100 + days which was spent fishing all day in a boat with my best friend, playing tackle football with mostly older kids, riding bicycles off of large backyard dirt jumps and attempting to enter the realm of a legendary status for attempting the neighborhoods first back flip on a jump, and a dirt gravel road the just so happened to harbor the largest hill my childhood eyes had ever laid upon. This section of the dirt road was respectfully called “the hill” by the neighborhood kids. This would be the entry level test of bravery which was to rocket your bike down the hill. Needless to say, I still have scars on my chest from the very first attempt when I was 5 and on scooter. The picture is painted and it becomes easy to understand how injuries might come to an active boy growing up in the early 90’s in my neighborhood with adventure and bravery in his heart and little to no adult supervision.


As we stood on the field, my mom struck a deal with me and presumably my Coach must have agreed as well. The deal was if I could run to first base from home plate without limping and running my normal speed (fast), I could play baseball for the season. And so it was. The challenge was set! Unbeknownst to me, my first official physical challenge with Perthes was about to take place. My entire season would come down to my ability to run without a limp and to run fast, something I was so pridefully good at. I limped my way to home plate to begin the challenge. I could feel the determination begin to fill my small muscular body. My heart began to beat faster. My mind focused and my vision narrowed. I would need everything I could possibly muster for this run. I was going to run so fast that I was going to leave this thing behind me. I was going to escape. Even if it hurt I wasn’t going to limp, I wasn’t going to stop, and I was going to run fast.  “Ready, set, go” my mom yelled…and I went. I hid it for the first step and then a sharp pain exploded from my hip as if needles pierced through me. The pain only got worse and the strides shrank shorter, slower, and more erratic. I was grinding my soft hip bone down and could feel every bit of it. Long before I made it to first base, I was a ball of tears. I was overwhelmed by fear, helplessness, and the reality of the situation that I couldn’t outrun. Crying perhaps from the enormous pain which had now taken over my body or from the mental thought of being forced to accept reality. I broke down as my new world started to set in. I didn’t out run the hip pain or Legge Calve Perthes that day or any other day, despite my best efforts. I wasn’t able to escape. Not only did I absolutely know that I wasn’t playing baseball that year but I had no idea when I would be able to walk again, let alone run like I had only a few months prior. I remember crying and being devastated on the ride home. On the bright side, I had one parent that actually believed me for now anyways. I don’t remember recalling too many bright sides at the time.   


The year was 1994. I was 8 1/4 years old.

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