Sometimes life doesn’t seem real. Not that it’s fairytale-perfect, but rather the opposite. People don’t realize the awful things that really do happen in life.
Every Day. To everyday people. Everywhere.
Happiness can be muddled in a heartbeat. It may not be so severe and life-threatening as cancer or outwardly noticeable as losing one’s job or home, but that doesn’t mean other illnesses, other trifles of life aren’t affecting in similar ways.
For me, my health has interrupted life since I was sixteen.
The morning of November 1, 2008, I was an irritable, angst-riddled teenager. I was moving my great-grandma into her new apartment in an old folk’s home just around the corner from her old place, and the only thought echoing through my head was, are we done yet? Amongst the monotony of arranging great-grandma’s knick-knacks and furniture, G-ma and I had just finished moving an old marble-topped end table when great-grandma decided that she wanted it clear across the room. G-ma, who was sixty-five, couldn’t pick it up to maneuver the cube of furniture across the room, around the small wood coffee table and worn-out, white floral sofa, and Mom wasn’t allowed to move or lift anything heavy—she had just had a hysterectomy. So I hefted the weighty table and started across the room. I was just two feet from the position great-grandma had indicated, the opposite end of the sofa, when G-ma decided that I couldn’t carry that heavy of a thing on my own. As she came towards me, I tried arguing with her.
“I’m fine, Grandma. Tiff and I do this all the time, remember? This is our job. We move and pick up furniture for The Shop.”
She didn’t agree with my argument: I could still get hurt and shouldn’t ‘strain’ myself.
It felt as if I was in a bad movie where they turned the scene into slow motion. I could see her coming towards me and knew what she was going to do—she wanted to take the table—but I couldn’t let that happen. In an act of desperation, I tilted the table onto its side. Oh, what a silly mistake that was. The nearly eighty-pound slab of marble slid out of the crevice of the table it was steeped in and fell on my foot, resting heavily where my toes meet my foot.
Pain. Blinding, excruciating pressure. My foot surely had concaved; everything had to be spilling out. Why wasn’t there blood everywhere? No bones protruding. Oh god. That bruise is bad. Surely I broke something. I was mute; only slight whimpers escaped. My G-ma and great-grandma were frantic. They continually questioned, “Are you okay?” and “What happened?” My mom, however, was controlled and came over from her perch on great-grandma’s walker in the minimalist entryway and took charge, trying to move me onto the couch and take inventory of my injuries. Breaking the ice, she asked me, “Do you wanna scream ‘motherfucker!’?”
I couldn’t believe my mother gave me permission to cuss, and the ‘F’ word at that! As a shaky laugh escaped, so did my tears. The dam finally broke, releasing everything I held close, both emotionally and physically. My breathing turned shaky; I was on the verge of hyperventilation. My cheeks were stained with the tears of my anguish. But still, I couldn’t bring myself to talk; nothing further than a few grunts and whimpers of pain forced their way through my lips. I wouldn’t scream. I couldn’t do that to my grandmas—they were already too worried about me.
There were no broken bones—how I wish it were that simple—nor any torn tendons or ligaments. They said I had a rare case of nerve damage called RSD, or Reflex Sympathetic Dystrophy. Sympathetic. There isn’t anything sympathetic about this disease. It’s similar to a rash in that it often spreads to adjacent areas. It took only a few months to get the definitive diagnosis; I was lucky, most people take years to get confirmation of their diagnosis.
I had been using a cane, barely managing to put pressure on a purple, nearly black foot and bear weight at the same time. The only way I could describe the pain was all the different types put together: there was aching deep into the muscles and bones, pressure—my skin felt as if constantly under the strain of trash compactor being hammered at, that uncomfortable pins and needles feeling like when a limb falls asleep and it hurts, like sharp daggers puncturing my flesh with no reprieve, and every nerve ending throbbing with its own heartbeat pounding up and down my nervous system. Never ending. I couldn’t even stand up. I was put on bed rest, used a wheelchair to move around the bottom floor of my house, and began a home-study for school.
Through all of this, my friends stayed by me, the girl who used a cane, couldn’t go to school, and whose whole day revolved around a pill schedule. They would even make trips to my house just to see me and keep my spirits up. While my thoughts and spirits were never particularly merry, my friends’ visits helped to keep me from sinking into complete depression. Often, I fluctuated between wondering why they couldn’t amputate my leg and whether death was a better alternative. Those were dark times, and I knew it wasn’t a good place to be. My mom struggled daily with my condition, and though I never voiced my queries aloud or hinted at them, somehow she always knew. I think my trials have had the biggest effect on her.
It was after my initial diagnosis in late February and early March of 2009 that I started seeing a pain specialist who changed my life—Doctor Andrew Hesseltine. Unlike other doctors, all he required was one look at my discolored and bloated appendage and the pain clearly written on my face; he knew better than to try to poke and prod. To start out, he put me on a cocktail of pills, including heavy narcotics—there was a protocol to follow, after all. It was a hit-and-miss to find the right combination. The medications alone, sadly, weren’t enough to subdue my pain. Those months on bed rest are blurred in my mind—a coping mechanism and side effect of the drugs that were constantly in my system. Next, I had an epidural to try to reverse the effects of my nerve damage, but it never numbed my legs. Rather, my pain increased and aggravated the nervous system, making the RSD travel from my foot and ankle up into my entire right leg and hip—a one-in-a-million reaction. Lucky me. Since I was so young, just sixteen, Dr. Hesseltine didn’t want to risk that same type of reaction again and continue with epidurals like he was supposed to. Instead, he had a neuro-stimulator implant—our last resort—put in to help control the pain in May of that same year. He cut a lot of corners for me to receive the surgery so fast. He always put my interests first.
The stimulator, about the size of a folded dollar bill, is embedded into the fatty tissue of my right hip with wires leading from it into the lower section of my spinal column. There is a cell phone-sized remote I keep with me at all times to control this little miracle. I can turn it on or off, direct where the stimulator helps, control how much it helps, and control the ‘feeling’ I receive from it. The leads in my back hover over the path the nerves travel from my legs to my brain, and since your nerves can sense temperature, vibration, and pain, the neuro-stimulator sends an electric impulse shocking those nerves and switching them from pain to vibration. It makes me feel like a human massage chair, because I also have the ability to change the pulses from steady streamline to shorts bursts.
Throughout the years following my accident, I overcame many obstacles, but it was the constant support of my friends and family and the doting attention of Dr. Hesseltine that helped me to strive forward. The amazing Doctor Hesseltine was one of the biggest factors in my forward motion toward normalcy—not health, but a normal, active life. At every valley of my journey, Hesseltine was there to guide me and make sure I achieved everything possible. When I regressed, he was just as devastated as I was. When I had a success and broke through some pain barrier—no matter how small the triumph—he was first in line to congratulate me, never taking the praise for himself.
“This is incredible!” Dr. Hesseltine was enthralled. “I’ve never seen such an extreme, textbook case before.”
I had no response for him.
The nails on my toes had fallen off and bled sporadically, not to mention that the skin on the bottom of my heels had started to fall off. When I first noticed my skin shedding, it was morning and I had spent the night in the leather recliner chair downstairs for the umpteenth time in a row. I went to stand up, but I couldn’t place any weight on my heel—it felt like it had been pierced with shards of glass. There, on the seat of the chair, was a dusting of dried skin flakes, and my heel looked as if someone had taken a cheese grater to it.
He continued on. “I just wish I had taken pictures from when you first started coming in here, through to now, and continued to track your progress. I could prove an entire thesis on you! You’ve had the discoloration, swelling, loss of nails, sensitivity to touch, pain, loss of temperature sensitivity; it’s jumped into feet, legs and your lower back, and starting to trickle into your arms…there’s so much proof here that RSD is real!”
I wish he had, too. Maybe then all those other doctors would stop saying that I was crazy, that I self-mutilated my body, that I only say and do these things for attention. Why would I cause myself pain or want to take all these medications?
Being born as a sickly child with a depleted immune system and being a first-class klutz, I was no stranger to hospitals. I actually hadn’t minded them growing up; they almost felt like a second home to me. Now, I am really sick of hospitals. Ever since the RSD started, my little ‘dizzy’ spells have turned into full blown syncopal episodes—passing out—and they have gotten progressively worse as the years have gone on and the RSD spread and festered. During my last episode, I was unconscious and unresponsive for over fifteen minutes; I didn’t come to until I was almost to the hospital in the ambulance. A lot of the paramedics, fire fighters and attendings at the hospital either know me or have heard about my case. In January 2012, I was admitted to the hospital again. I had just done a one-week stint in Redlands for severe abdominal pain. This time I was in Good Samaritan Hospital in Los Angeles. It was a lot more hospitable than Redlands Community, but the food wasn’t very good. My new cardiologist, Dr. Cannom, was putting me on medications after he tortured me with a tilt-table test. Apparently, I have a heart disease and that was why I continued to pass out. It is called Dysautonomia.
There are various arrays and degrees of the malfunction, but basically my already dangerously low blood pressure would drop due to my sympathetic nervous system surging, yes there’s that damn word again, and then my body would try to compensate by creating a vaso response, but my heart rate and pressure would plummet. In a normal syncopal episode, once your body is flat, your system should kick-start again and you wake up—usually within seconds, a couple minutes max. No, not me. The strain was too much and my heart couldn’t recover fast enough, so I would continue to stay down until it could recover. There was so much going on that my heart was even losing muscle mass. In the span of a year my heart output went from 55% to 45%—way below baseline. I was dangerously close to heart failure.
They kept me locked away for nearly a month. Originally, the medications didn’t work and I only deteriorated more rapidly, but they quickly figured out that I also had adrenal insufficiency. The adrenals’ main hormone secreted is cortisol, a steroid vital to staying alive. It helps the body to fight off stress and gives a burst of energy. With adrenal insufficiency, I become fatigued and achy. It can affect my heart and blood pressure (causing dangerously low blood pressure), and if gone untreated it can cause severe abdominal pain—ring any bells? It can also cause shock and if still not treated quickly results in death. When they had found out about my adrenals, my cortisol levels were only at 0.12, a normal person is anywhere from the 7-20 mark. The doctors were surprised I was still alive. While I could silently reflect on this—everything made so much more sense now, why I felt like my very essence had left me—there was no spark of life in me that had the will to move or fight back. I was constantly thinking and going round in my head, but I couldn’t get my lips or any other part of my body to cooperate. Smiling, talking, turning my head they were inconceivable. Without my adrenals, my body was failing.
Dr. Cannom was making me talk to a psychiatrist today. He’s afraid I’m depressed. I’m not. Sure, I’m a little frustrated at the situation, but I’ll get through it. It wasn’t like it was the end of the world, right?
I hate psychiatrists. He needs to go jump off a cliff, I think to myself as I try to wipe more tears away. I’m so angry and yet I can’t get my face to react properly. I don’t have enough energy to yell or anything else. I had been nervous when he first came in. I didn’t know what was going to happen. He asked me questions, I can’t even recall the questions I’m so mad at him. After a short time in the room, my dad just outside the door, he started his assault.
“I’m not sure you even have RSD. You don’t know real pain. I broke my leg when I was younger. That was real pain. You probably just need to lose weight, your legs can’t support your big body.” He told me gesturing to the leftover rolls sitting on my side table next to the hospitable bed.
My lips wouldn’t react. I had no energy. I wanted to ask, “Well how can I be so fat from eating those rolls if they’re sitting uneaten on the table?” Dumbass. Instead, he soldiered on.
“And all these medications! You probably don’t need any of them. Your pain specialist probably just throws all these pills at you. Giving you whatever you ask for.”
That was it. Call me fat. Attack me. Call me crazy for saying I have RSD, but don’t degrade Dr. Hesseltine. I was so mad, but my voice sounded meek and afraid despite the rage surging through me. I argued that he wasn’t like that. Dr. Stick-up-his-ass acted like he was trying to soothe a child holding a temper tantrum. He thought I was a druggie, that I just wanted attention. He was just like every other damn doctor I encounter. None listen to me.
When I told me parents, they didn’t believe me. But after speaking with him, they were furious at his audacity. I couldn’t even say I told you so.
He stopped me cold-turkey on all my medications excepting a few, which is very dangerous, especially for the anti-seizure medications, and put me on his own cocktail of pills. Including special ones that helped with pain and an anti-depressant that were also appetite suppressants. He seemed pleased with himself about that.
The next day they told us I have adrenal insufficiency and give me a direct cortisol boost into my IV. I felt a little better instantly. Then he came in. My mom and I were alone. He harassed me that he doesn’t think I really have adrenal insufficiency or RSD. Even my Dysautonomia is questionable to him. My mom was ready to burst, vibrating with vehemence.
On the third day, my parents and I tense when he walks in. My dad is ready to throw him out at the first sign of trouble. I barely pay him attention, focusing on the TV. I was trying to be a bitch, polite wasn’t getting through to him. When he says I look like I’m doing better, I tell him I feel better. He thinks it’s his doing—getting me off those pills—but wants to know why I am refusing the anti-depressants.
“Because I’m not depressed.”
“Well, do you know why I put you on them?”
“Yeah ‘cause they’re appetite suppressants,” I snarked back.
I could see my parents shaking with the effort to hold back their laughter. He continues to try to persuade me. Finally I was through.
“I’m not taking the freaking anti-depressants!” I shrieked. At least we knew the cortisone was working.
He flinched back, regretfully accepting my decision. Realizing I was done with him he slunk out of the room. Why did I have to battle to prove my sanity on top of trying to survive living life?
It was a terrible domino effect. My RSD had caused too much stress on my adrenals. Without proper adrenal function, my heart couldn’t work properly. With my heart at half-mast, my adrenal and pain syndrome were exacerbated. The doctors, my parents and I were all worried my nerve damage, which had now spread into my hands and arms, was now attacking my most vital organ. I hadn’t seen any of my friends since Christmas, though I had been too sick to text much, and had to take a leave of absence from a semester of school—not even home-study.
The medications didn’t stop me from passing out and as a consequence I had to have a pacemaker put in on August 16, 2012. Between the medications and the pacemaker, there seems to be an improvement, but we will never know for sure until it happens. I still get dizzy; I still get dangerously close to passing out, but have yet to complete the act. My family teases me, though, about being a bionic woman with all the electronics implanted in my body: two neuro-stimulators and a pacemaker. Don’t try to get through security with me; it’s always a hassle. I sometimes set off the anti-theft sensors in stores, and if I put my cell phone too near any one of these devices it messes up the technology. I’ve gone through a few phones because of this, though they’ll say it’s because of too much texting.
Of course, I could never vent to my family—especially my mom—because they were too close and knew too much, but I would often talk to my best friends about what I had been experiencing, feeling, and thought of my predicament. They help me to fight through pain and exhaustion, to be ‘normal’ and use my wheelchair, walker, and cane as little as possible, and when I would need one of them, they never judged. After I would vent to them about all things depressing, they would pick me up and continue to stand by me. I can never forget their unfailing loyalty. My friends think I’m the strong one, but I think they carry the world on their shoulders. They have their own burdens and yet they carry mine with them too.
All of my ailments are problems that either are, or could be life-long. My heart defect will never go away. There is no way to know the extent of the damage to my adrenals, except time to see if they ever could produce cortisol again. And the RSD, I could be handicapped my entire life, someone could find a cure or a well-responsive treatment, or there is the possibility that it will just go away in due course. I’m okay with being a “gimp-gimp with a limp-limp,” my own personal nickname for my slight swagger, for eternity. The future is unsure. It’s unstable. But I will weather it no matter what the outcome. When I had my first surgery, my sister, Tiffany had just gone to Six Flags Magic Mountain and came home with a Supergirl cape for me. I brought it into the operating room with me under the gurney. It made me smile when I should have been frightened, and the nurses thought it fitting. Tiff thought I was Supergirl; I wished I could be. But I always strive to walk on the bright side of life — a little saying I picked up from the play Spamlot, along with “I’m not dead yet.” Not matter how bad things get, I’m not dead yet. Even in the darkest of days, remember to always walk on the bright side of life.