I was “that kid,” back in the day. You know the ones: naturally gifted at sports, got A’s without studying, excelled at everything without even trying.
I am aware of how blessed I am in that regard, despite what I was going through with my caretakers. Looking back, it feels like a solid trade-off. I had to try so hard to be a functioning human being, it was nice to not have to struggle with success.
Years of being an excellent athlete, a leading musician, and an honors scholar had me believing that physically, I was unstoppable. I had shelves of awards, name-recognition throughout the county, and people would often tell my parents that I was going to succeed at whatever I put my mind to.
Now as an adult, I look back with such admiration. I loved being part of a team, I loved living up to all of those expectations, I loved the constant need to push myself, I loved the accolades that came with being great at something. Winning a race, scoring a goal, acing a test, nailing a melodic solo – – all things that made me feel worthy. needed. alive. beautiful. strong.
Normal. It really felt good to just be normal. When I was focused on the game or lost in the music, there weren’t any spiraling thoughts of “Is there something wrong with me?” “why am I so different?” “why do I exist?”
As part of a team, or an ensemble, I was needed. Despite the fact that my body had been abused, I was strong. Despite the fact that I rarely got to rest at home, I had endurance. Despite the harmony in my relationships, I was able to produce beautiful melodies. Despite the lack of peace and security I felt in myself, I was someone others relied on to reach a common goal.
Worthy. Needed. Alive. Beautiful. Strong. Part of the tribe.
I could go into all the science behind the neurological and physical benefits of physical activity and music to help victims of abuse, stress, and rage find peace, but there’s already a million other resources regarding that.
This post is about how my reality has been shaped by events in my past. And you would think that based off of everything I described above, my reality would have shaped into something incredibly powerful and positive. But, this reality took a hard shift when I was still a developing mind.
In high school, I was attending soccer try-outs. I had just finished freshman year by captaining the junior varsity team, and I had my sights set on varsity. I was pushing hard, showing off, and laying it all out on the field.
Mid-drill I felt something was “off.” I couldn’t breathe. My heart rate was higher than normal, I wasn’t able to take a full breath in, and everyone else on the field went a little blurry.
I jogged off the field to tell the coach, and he took note of my red-ish/purple-ish skin-tone and asked me to sit down. Unable to catch my breath, my mom was called, and I was sent home. A couple hours later, after a long shower, some rest, and a good meal, my heart rate was still above 100bpm.
Something was definitely not right.
Life changed after that. A schedule that used to be filled with practices, concerts, games, and tournaments now became packed with doctor appointments, specialists, hospital visits, and way too many “sick days” stuck in bed.
It took two years to find a diagnosis: “Rheumatoid Neurovascular Dystrophy.” (Now more commonly known as “Reflex Neurovascular Dystrophy” but for the sake of simplicity we’ll go with “RND.”)
Basically it means that my nerves are incredibly sensitive and feel “phantom pain.” For most it’s localized to one area or joint in the body. But, lucky me, I got the jackpot of full-body RND.
The reason it took two years to find is because of how difficult it is to diagnose. Every test, every scan, every image… everything came back “normal.” But my life was anything but normal.
I was so fatigued all the time, I could barely make it through a day at school. My breathing was so shallow, I had to give up the clarinet. My body was so weak and achey, I couldn’t even participate in gym class, let alone extracurriculars or travel teams.
My body had checked out. And honestly, so had my brain. I got up, tried to make it through a day of school, came home, tried to eat something, and slept. A LOT. Every moment I didn’t have to be somewhere, I slept.
Some nights, I would wake up with a fever, unable to breathe, every muscle in my body cramping. My mom would rush me to the hospital, even though we both knew they’d say there was nothing they could do.
When I went to college, and had to pack my room up, I distinctly remember opening up my nightstand drawer and finding over 20 hospital bracelets.
I also remember I went to get blood tests done 3 weeks in a row. I filled almost 50 test tubes. The nurses went to stick my arm and my vein collapsed, sending me into my first ever blackout. They ended up sticking my foot just to get the last couple of samples done. They were looking for white blood cell count, allergies, rare diseases from bugs bites, anything to provide an answer to my deteriorating body.
I don’t really remember what doctor suggested it. But the winter of my junior year I was signed up for a program in the Children’s Hospital of Philadelphia (CHOP), for this RND treatment.
I wasn’t a severe enough case to need overnight stay nor far away enough in Jersey to require assistance from Ronald McDonald House, so my mom, God love her, put her life on hold and got up at 6am every morning to drive me.
The program consisted of an 8-hour day of over-stimulating my body. That’s the nice way to say what the real treatment was: teaching my nerves what real pain was so they stopped feeling fake pain. Yes, they literally said that.
Every day I would workout, HARD. Jumping, running, crawling, planking, lifting, you name it! And then when I was tired, I’d go do mind-games: puzzles while planking, writing song lyrics on a piece of paper that was taped on a wall above my head, sorting colors into boxes while squatting etc. Then when I was too tired to move, they’d put me on a shaking machine. I would stand on a platform, and it would literally shake me. Sometimes I’d stand, sometimes I’d squat, sometimes I’d plank. Every muscle constantly engaged, every ounce of energy used, no matter how tired I was or how much pain I was enduring, I had to keep going.
And since the whole point was to desensitize my nerves, they had me wear texturized spandex so that no matter what I was doing there was abrasive rubbing on my skin. Sounds fun right?
They didn’t ever want me to get comfortable with the movements or master anything, so every day I wasn’t allowed to stop doing an activity until I beat my time from the day before. I remember one day I had to stay an hour and a half late because I had to do “inchworm” across the hallway and I was unable to break my time. Every other kid in the program had gone home, and all of the doctors were in the hallway cheering me on, chasing me, timing me, coaching me… but, I was tired and frustrated and annoyed by the whole thing.
My body had failed me.
I remember that day that I stayed late distinctly because that was the day I said “I’m getting out of here.” I remember going in the next day and saying “I am feeling better, no pain.” I still felt pain, but I wanted to not.
I pushed myself to beat my time at everything they threw my way. And while I usually groaned, and whined, and complained throughout everything, I kept my mouth shut. I showed no sign of pain or weakness. After the third day of that kind of attitude, they began to talk about the idea of me getting released from the program and back to life.
YES. That’s what I wanted. I wanted my life back.
Truth be told (and I haven’t ever said this out loud, except to one person), I was lying to get what I wanted. I didn’t really feel better, I just didn’t want that lifestyle anymore.) I was ending my junior year of high school, I missed getting my driver’s license, I pushed almost all of my friends away, I didn’t have a team anymore, and I wanted to get back to living.
But, that’s where the reality shift is here. The realization that I had the opportunity to choose. Yes, I still feel the nerve sensitivity sometimes. But, I also have the choice to either let it stop me from doing what I want or to let it fuel me to push harder.
The only part of the program I haven’t mentioned is the psychological part. Right after lunch, I would spend a little time talking to the on-staff therapist about how I was feeling. Then, I would go into a dark room with calm music and lay on the floor with my eyes shut while a woman coached me through breathing.
I hated that part of the day. Even though it was the only time of day I wasn’t being physically pushed to my limits, it was the hour that I had multiple people telling me that this whole thing was “all in my head.” That’s the phrase they would use.
As an adult I now understand that my body was physically expressing how I felt emotionally: releasing all of my trauma and pain through physical break-down. But, as a kid, I heard “you’re making this up.” It pissed me off; it made me want to get out of there even faster.
At the time of leaving the program I was under the impression that I wasn’t really better. But, the truth is that I had chosen to feel better, and so I actually started to. The more I had to “be better,” since I said I was, the more I really started to feel better.
This lesson has taught me so much, and it’s something that I am now using to shape my reality. We are the masters of our Universe. We have a choice: to be the victim, or to be the creator.
When it comes to my body, I am seeing how timid I am. I worry about getting hurt, I see germs as the gateway to another hospital stay, I fear any reason to need a doctor. All of those things remind me of the years of my life I missed while being sick. They remind me of how I missed out on what could’ve been a successful soccer college career. They remind me of how I can no longer even read music. They remind me that I was “this close” to a life of being the best at something, and now I’m just decent at some things.
The fear has stopped me from trying new things at CrossFit. My mentality is “I can’t do that.” The fear has stopped me from training in a way that helps me reach my ultra-marathon goals. My mentality is “I should rest.” “I’ll never be the best.” “What if it hurts?”
The combination of physical abuse and physical trauma has put me in a state of paralysis, where I don’t push the limits, and therefor prevent myself from reaching my goals.
I want my drive back. I want my ability to push the limits back. I want my courage, and boldness, and strength back. I want to compete. I want to have a body that supports all of my fitness goals.
What I believed about myself: damaged, broken, unable to achieve great things, unable to take care of myself, unable to show weakness, measured by my accomplishments, not the best at anything
What I believed about other people: they don’t believe in me, they can’t help me, they don’t see me
In an effort to start creating a life in which I thrive, I’ve created a “New Reality.” The purpose of this tool (as described in my previous post) is to reverse-engineer a better, but still true, reality. And I’m going to stare at it, re-read it, and flood my conscious mind with it until I fully believe it, solidifying it in my subconscious.
As always, thank you for the space to be. This has been an incredible journey – – one I am documenting, of course! – – and I hope it brings you the strength to face your truth as well.
See you for Chapter 4. Keep on, MavPack!