Choosing Optimism When Dealing With Chronic Illness
Grow through what you go through
I manage to squirm out of the backseat of my dad’s truck where I have been laying on top of a massager for the past thirty minutes. My legs and back have this dull ache to them that at this point has become normal. My breathing is habitually shallow, due to the stress and anxiety that has been drowning me for the last nine months. I hobble painstakingly to the stupid glass revolving door, breathing in my last breath of that fresh New Jersey air for a while. This is where 25 failed doctors’ visits and multiple misdiagnoses have led me.
Doctor #26 finally was able to figure me out, yet still make me even more confused as to why I was in pain:
“This is rare but I have come across a few people like you in my career as a neurologist. You are suffering from Amplified Muscular Pain Syndrome or AMPS and there is a program in the University hospital that has been immensely successful for those like you.”
AMPS was basically another umbrella term for the condition of Fibromyalgia. In most cases, some sufferers are able to ease their pain, but rarely become permanently pain-free, which terrified me. After a year-long journey of nothing but confusion and increasingly prevalent chronic pain, this is supposed to be the light at the end of the tunnel. Although impossible to explain to others, all the days, weeks, and now months of pain, stress, and frustration will start to dissipate, so I can go back to living a more independent life again. The solution was right through these doors, supposedly.
I do not know who made this type of door, but revolving doors absolutely suck. Trying to time my step in and out of it so quickly and precisely, I grimace as I hop out like a bullet leaving the chamber of a revolver. I am instantly bombarded with bright colors; yellow, purple, blue, and green surrounding me in every direction. My knees are throbbing while leaning over the entrance desk, as the security guard hands over the guest pass, noticing the anguish on my face. As the real world will continue day-in and day-out, here I am, trapped inside these dreadfully colorful walls, that do not reflect how I feel about spending the next four to six weeks in here.
After checking in, I head up the elevator with my parents to see my room for the next month or so. The smell of disinfectants and delicious, leftover hospital mac and cheese fills my nose as I enter the hall towards my room. Before I enter, I hear someone singing the song “Riptide” and brace myself for the grand reveal of who my roommate will be. A large dividing curtain “splits” our room in two. My half is small and barren with a bed half made with white sheets.
The piercing vocals have gotten louder now, confirming my fate of being paired with the noisiest roommate of all time. My back aches as I hobble into the room with my parents trailing behind with my bags full of clothes and pain relief supplies. The curtain then swings open as if it were the start of a show and the unwelcome sunshine were his spotlight, and my singing roommate was the star.
He is about 5’10 with a few chipped teeth and somewhat disheveled hair. “Hey man! My name is Bryan Wong it’s so nice to meet you man!” I greet Bryan with a little bit of genuine excitement because he is close to my age, and begin to think how we could just treat it like a dorm room (except for his parents being there 24/7).
After our parents chat for a while and I get to know Bryan, I quickly realize why he is at Children’s Specialized Hospital. Fifteen minutes after showing me his favorite card trick, he proceeds to show me his favorite card trick again. He handles the organized deck with magician-like sleight-of-hand.
I realized it was not only going to take extreme amounts of hard work to get through this month in hopes that I could be feeling better, but I was going to need serious patience. That same night, my parents gave me the inside scoop of what happened to Bryan. He’s a college student who got hit by a car while riding his skateboard, and now has amnesia and no memory of the last 365 days. Bryan was the first of many other patients that I would encounter in my month stay.
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I slam my black and brown HUF bag down with relief and quite a bit of excitement. It is Saturday and I have just finished my second week in the Chronic Pain Program. I am halfway to the finish line and my feelings of pain down my legs and in my back are replaced with exhaustion from constant Physical/Occupational Therapy, 8 hours a day/6 days a week. My days would start in a heated pool for laps to get our bodies warm, and the rest of the day could consist of a variety of activities.
During some sessions, I sit on an exercise ball while playing cards to relearn how to sit without feeling pain, and I play basketball while lifting and putting down a laundry basket to regain normal function in everyday life during another session. The first few days of this are almost unbearable and lead me to feel worse than I did before starting, but over the course of a few weeks, it is becoming increasingly easy. I now have an understanding of my condition, and how rigorous exercise is tricking my brain back into operating normally and not being so hypersensitive to pain.
The difficult part to overcome is my own subconscious, which has a mind of its own. While my subconscious and conscious mind are going back and forth, I begin to start using the techniques my psychologist has taught me for when I have a pain flare, like meditating and socializing with others, and telling my pain to go sit in a corner and not bother me for a while.
Later that day, Bryan is on the phone for the fifth time talking to an old friend about what he used to be like before the accident. It was sad to hear at first but when you are living with him, it eventually sounds like a broken record. I did not need the added stress, so I begin distracting myself by putting myself out there to socialize with some other kids on my floor. Being one of the oldest here, I felt a little uncomfortable.
I stroll into the teen lounge for the first time in my two weeks at Children’s Specialized and suddenly the dullness of the hospital dissipates. The brightly colored walls finally reflect the mood inside a room and are no longer unwarranted. It is shockingly lively and the vibe feels similar to hanging with my friends at home, except I cannot stop noticing the boy of about 12 who sits in the corner mumbling the words to Despacito, occasionally interrupted by an unpleasant scream and moan.
I try to be mindful in the situation and talk to the group of supposed-to-be high schoolers who are playing Madden, with such enjoyment as if they wanted to be here. I quickly get the low down on why they are all on extended stays in this hotel for banged-up adolescents. One 15-year-old boy was hit by a car going 50 mph and broke 13 bones in his body and face, another in a motocross accident that he was airlifted from and kept in an induced coma for two weeks, while another girl broke her neck getting hit by a car as a pedestrian in a crosswalk. I saw scars all along her neck and right leg, which were barely exposed outside of her pink polka-dot blanket. Past all their scars, leg braces and tubes, I notice they all share one thing in common; they are smiling.
“What’s up legs. Why have they got you in here?” asked a blonde-haired kid in a reclining motor chair, questioning me almost as if I have been arrested. I tell him the complicated details of my condition, and receive the same response that I do from everyone.
A quizzical look, like I am speaking Mandarin. “Damn, I thought getting hit by a car was bad, but you and Aidan got invisible pains? That sucks dude!” I glance at the other kids, and for the first time ever, I feel guilty for talking about myself and what’s wrong with me.
The last boy I meet, Aidan, is 12 and has AMPS as well and it devastates me to the very core. He looks like any other kid, except for the masked confusion and desire to be playing sports with other kids his age. The very same condition has manifested much more on this poor victim, who is now in a wheelchair due to excruciating pain down his leg and swelling in his feet.
As with my pain, his is unexplained by tests and I feel such sympathy having gone through something similar. I had my own battle, and the most I could do for this younger version of myself was set the example and work my ass off day-in and day-out. He has been here for two months already and has not made progress. Yet, he shared the same positive outlook as the others that I could not manage to find for myself.
At that moment, my self-proclaimed, nine-month pity party had come to an end and a totally different narrative was written. I saw what could have happened to me and finally realized how fortunate I would (hopefully) be to be able to walk out of that place as an individual. It was my purpose and duty to live with the attitudes and morale that these kids do. I pitied them initially and by the time my four weeks were up, I admired their positivity and courage.
On my last day of therapy, I am allowed to finally go outside and play basketball, something I never would have imagined being able to do when I arrived. Breathing in that first breath of fresh air is glorious and I take such a deep inhale that I feel swollen with oxygen. Every shot I take, I notice each movement that leads up to my jump shot; the bending and slight crack of my knees, the engagement of my hamstrings and glutes, parallel to the ground. I line my right hand up with the shallow grooves on the Spalding basketball and flick that wrist when I shoot. I even notice how my brain is able to make these motions subconsciously, something that Bryan may not be capable of anymore. All of these movements will never be taken for granted again.
While my body is certainly feeling better, the biggest transition has taken place in my brain. I enter the teen lounge one last time, noticing the posters that litter the walls with motivational quotes that now jump out at me. I see the same kid in the corner, still mumbling Despacito, and the same group of car crash survivors and victims of other freak accidents. One would never know the circumstances these kids are under when walking into that room. It is filled with laughter and zeal, and taught me the most important lesson I have ever learned in my life. What is the point of any experience if you do not grow through what you go through?
Before I am discharged, representatives from the hospital need a spokesperson to go on TV and speak about the program. While previous to this experience I would have been nervous and possibly turned down the offer, I feel it is my duty to vouch for the other kids who are missing out on their lives due to unwanted circumstances. Now, I am in the spotlight after being lost in my own dark world for so long. The room is empty aside from the host, myself, and two camera people. A silver coffee mug sits in front of me, looking eerily artificial on the coffee table, and I go to take a sip of it but it is empty.
Nervously waiting to answer a question, the host asks me, “What has Children’s Specialized done for you and what does it mean to you?” My answer was unrehearsed and genuine, as I described the people I met and the courage they had. I talked about how these kids were happier than most people I had ever met and it amazed me how they were all growing through what they were going through. And that sort of became the motto for myself and those in the hospital when they heard about my interview:
“Grow through what you go through.”
There will be times that you hit rock bottom, but it is up to you to dig deep inside yourself to try and find beauty in a struggle.
Going into the hospital, I was depressed, dejected and torn apart by life and unwanted circumstances, but the kids I met in the hospital taught me how to live in the moment again.
On my way out of the hospital, I had pep to my step and glanced at the revolving doors with a different sense of purpose in my life. I hoped the next person who entered through the revolving doors would come out just as inspired as I was.
Those doors never stopped spinning.
