My Most Prominent Childhood Memory Involves Being Chronically Ill

When you think about your childhood, what are some of the memories that stand out to you the most? Your 10th birthday party (turning double digits was a big one for so many)? Earning that free Pizza Hut for meeting the reading challenge? The book fair at school? Riding your bike during a summer shower in your bathing suit? Playing handball at recess? I’m sure things like these are the ones that come to the forefront of your mind relatively quickly, huh? Unfortunately for some of us, those types of memories are further down the list. When I was asked what my most prominent childhood memory was recently, the answer came so quickly to the tip of my tongue, but it left me with such sadness at how quickly it left my mouth. My memories are quite tainted by fear and sadness. And while I had a childhood more blessed than most, it is hard not to be completely honest about how much it haunts me.

The precursor to this memory: It was December 1997, around six or seven in the evening. I was 11 years old. I was waiting for the dryer to stop so I could fold my laundry, and while I was waiting, I was fooling around on my skateboard in the garage. I was in my pajamas. Suddenly, I was on the ground and reduced to tears. The wheels of my skateboard had hit a small pebble on the ground, throwing me from my board, and I landed directly on my right elbow. Little did we know, this event would change the whole trajectory of my young life and would forever affect not only my physical wellbeing but my emotional one, too.

After going to the doctors, I was diagnosed with a bone contusion on my right arm (a bone contusion is a bone bruise), put in a soft cast and sling, and told it would probably take a few weeks for my arm to start feeling better and back to normal. It was nothing serious. I would heal. The pain would go away. Right? It didn’t. The pain didn’t stop. A month went by and I still could not move my arm out of a 90-degree angle, and I could not open my fingers out of a fist. My pain turned from sharp, stabbing pain to an intense burning pain. Pins and needles. My skin burned. It was red, shiny, and I could not be touched. The wind hurt. Clothes hurt. I cried. Oh how I cried. It took nearly a year to receive the correct diagnosis of reflex sympathetic dystrophy syndrome (RSDS, or now known as complex regional pain syndrome, or CRPS) — a year of unmanageable pain, of broken promises from doctors, of more questions than answers, a year of loss. It was during this year that the most memorable event of my childhood occurred.

***

I am 12 years old now. My mom and I are at yet another doctor’s appointment with yet another new doctor. A “specialist” at that. I am sitting in the exam room with my mom and the doctor. The doctor asks my mom to come outside the room for a moment to speak with him and he tells me not to worry, she’d be right back. They step outside into the hall, but the door doesn’t close all the way, so I can hear them speaking through the crack. What I hear next will, also, forever change my life and my self-image. It will create constant self-doubt. It, to this day, makes me question myself and my reality.

“I think your daughter is an over-reactive, over-dramatic child and she needs to be admitted to a mental institution for evaluation.”

These are the words this doctor spoke to my mom. “Am I ‘crazy’? Am I faking this pain? Do I really hurt?” I cannot tell you how quickly we left the office after he said this, but I remember it being quite fast. The damage had already been done. And from there on out, for the next 18 years (I am 30, so yes, I am still dealing with the repercussions of the statement made 18 years ago), I have been questioning myself every time I feel physical pain.

Reflex sympathetic dystrophy syndrome is a rare illness of the autonomic nervous system. It is characterized by symptoms including pain (most common is a burning pain), tenderness, and swelling of an extremity associated with varying degrees of sweating, warmth and/or coolness, flushing, discoloration, and shiny skin. Patients may experience sensitivity to touch on the affected limb(s). RSDS is often referred to as the “suicide disease” because on the McGill University Pain Scale, RSDS ranks 42 out of 50.

While it is still considered a rare illness today, when I was diagnosed back in 1997 it was even more rare/less well known in the medical community, and there were very few doctors who treated it. Being diagnosed with RSDS as an adolescent was even more unheard of. This is why it took over a year to properly diagnose me. It wasn’t until my mom took me to Children’s Hospital of San Diego (now known as Rady Children’s Hospital of San Diego) to see an anesthesiologist named Dr. Patrick Demars. He was the first doctor who told me he could help and actually followed through on his promise. He knew what this demon was and how to treat it. Treatment, at this point, consisted of nerve blocks called Stellate Ganglion Blocks, in addition to anti-seizure medications, intense physical therapy, and a TENS unit. It took about eight months for me to regain use of my hand and for me to move my arm out of a 90-degree angle. We had finally found a regimen that controlled my pain. Even though it meant taking medicine three times a day, every day, hospital visits, ER trips, etc., I was finally able to get back into the life of a “normal” seventh grader.

Unfortunately, this disease can progress very quickly and severely. The summer after ninth grade, my family and I went on a camping trip to Yosemite National Forest. It was during our hike up Half Dome that I started feeling extreme pain in my left leg. I didn’t think much of it, but by the time we returned home from the trip, my leg was showing signs of the RSDS having spread. And it did spread, like wildfire, throughout my body. By October 2001, my RSDS had spread not only from my right arm to my left leg, but it had spread to my whole body. I was barely able to walk, often having to use a wheelchair outside of the house. I could not comfortably wear clothes (I mostly wore shorts and a tank top, no shoes, no socks), I was forced to quit playing competitive sports (soccer was my life and that was the toughest pill to swallow for me, as my goal was to play collegiate soccer at UCLA), and I had to leave my high school and switch to a home hospital track (where a teacher came to my house twice a week to bring me assignments and exams, help me with my studies, etc.). My friends started disappearing. Because of my pain, I was barely able to leave the couch, let alone my house. I wasn’t able to go out and ride my bike. I wasn’t able to stay out until the streetlight came on. I wasn’t able to have a sleepover because I didn’t sleep more than two or three hours a night. My mom once told me that one of my best friend’s mom had to bribe her to come and spend time with me. All I could do was lay on the couch and watch TV. And I cried. All the time, I cried. I cried for so many reasons that didn’t just include the pain. I cried because I had lost my sense of self. I no longer was the soccer player. I no longer was the social butterfly who was friends with everyone she met. I became introverted, self-conscious, and depressed. I spent more time in the hospital and at the doctors offices or physical therapy than I did in my own bed.

Doctors stopped knowing how to treat me. Nothing they did was helping. We started, again, on the search for a doctor who could manage my pain, who could provide us some kind of hope that one day, this pain would end. And during this search, we came across more doctors who called me “crazy,” accused me, a 15-year-old, of being a drug addict, who doubted my pain as being real, and who would promise me they’d help but then turn around and blame me when they couldn’t. We eventually found the Pediatric Pain Program at UCLA under the supervision of Dr. Lonnie Zeltzer. But by the time we got to UCLA, my spirit had been broken. I was a shell of a girl. I hated my body, and that hate led to a very serious eating disorder. I was so mad at my body for doing what it had been doing to me for so long (all the pain and for everything the pain took from me) that I felt I had to “get back at it.” The only way I knew how to have control in my life and over my body was to decide what could go in and out. UCLA provided me many treatment options. Every Wednesday morning we left San Diego around 7 and drove the two-plus hours to Los Angeles. We started off with physical therapy and then went straight into biofeedback in La Brea. From there we drove to UCLA medical center where I met with my psychologist, Samantha Levy. Samantha was the first person who noticed and who I told about my eating disorder. It took about two months of me sitting in the room with my back to her before I would even look at her. I thought if I talked to her that meant I was admitting I was “crazy” and that my pain was not real. But that isn’t why they had me see her. Everything I’ve mentioned above — the self-hatred, the horrible loss I experienced, the days/months/years spent in and out of the hospital — that is why they had me see her. Chronic illness and chronic pain can break a person. Most people don’t know how to process the loss — and a child understands this loss even less. After Samantha met with me, she met with my parents. I will get back to this part shortly. I then met with Dr. Zeltzer who worked with me on medication management. After Dr. Zeltzer I went and got acupuncture, which made my pain exorbitantly worse, so after about two months we stopped. Lastly, we drove to Brentwood and met with Kathryn DePlanque, a hypnotherapist. Kathryn changed my life. Hypnotherapy has been one of the most useful tools I have in my toolbox for pain treatment. While it doesn’t take my pain away, it helps me to process it, to take my focus off the pain and put it onto something/somewhere with a more positive impact/affect.

RSDS has affected my life in so many ways — you got a glimpse into how above. But RSDS and chronic pain/illness does not just affect the individual. It affects those directly and indirectly involved in the patient’s care. Every Wednesday we left the house at 7 a.m. and did not walk into the door at home until after 8 p.m. That is over 12 hours that my parents spent away from my three sisters. That is about five hours that my older sister or a neighbor had to look after my younger sisters. The nights Mom and Dad spent at the hospital are nights my sisters didn’t get tucked into bed by both parents. Focus was put more on my pain than what grade Nicole got on her math test. Lisa started singing so loudly (honestly, at the top of her lungs) all the time so someone would notice her. And this is not to say that my parents were neglectful or bad parents. It is quite the opposite. My parents went to the ends of the earth for their child. They did everything and took me everywhere suggested to get my pain under control. They rubbed my back for hours on end as I cried in their arms. My parents, all parents of a chronically ill child, are super heroes. But, unfortunately, there were times when certain things fell through the cracks because so much attention needed to be on me. And I know my sisters felt neglected. They had to grow up faster than most kids (like I did, just in a different way). They were forced to understand and endure things most of their friends never did. And there was a lot of resentment, and rightfully so. Between my RSDS and the eating disorder, the focus was always on me. And I can only imagine how it was for my parents. Trying to juggle the lives of four children where there was a 10-year difference between the youngest and the oldest — so very different life events that occurred for them to have to be hyperaware of. The stress of seeing their child in pain every moment of every day (and night). To check in on me after I finally fell asleep only to hear me whimpering in pain. Not even sleep could take away my pain. Not being able to cure your child or take their pain away, even for a moment. Not knowing who to turn to, what doctor or medicine would help, and having to do damage control from the doctors who reduced me and my pain to nothing. Chronic illness is a beast not many know, but at the same time, too many know.

It amazes me to see how far I’ve come in dealing with my illnesses. Now I am 30 years old. I have many more diagnoses, but my pain is still just as bad and just as unmanageable. My parents are still my caretakers. My sisters have grown and as we’ve grown older we’ve grown closer and more honest with each other. We lay things out on the table. We talk about how my illnesses affect me, my sisters, and my parents. But the focus will always be more on me because of the nature of this beast. RSDS forever changed my life. And while I mostly talked about the negative ways it affected me, I do have to say that it has made me a stronger, more compassionate, more forgiving, more passionate, more willing, and more adventurous individual.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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