Hopefully this will be one of the more entertaining lectures that you have to sit through. I realize asking a teenager to come in and talk about themselves for an hour seems like asking for trouble, but I’m 20, my angst is stale, so your chance of survival is probably greater.

Before I start I just have a little disclaimer I’d like to make. My experiences are my own and my feelings are my feelings. By being here I am offering one perspective, not claiming that this is how all young people feel. I’m also not saying that my experiences are worse than anyone else’s. I am very aware of how lucky I am.

My name is Emma Gilchrist. I’m 20 years old. I live in Benicia with my dads, younger sister and our two puppies.

I’m a bit of a nerdy fan-girl, especially when it comes to Harry Potter. I’m a sophomore at Diablo Valley College, I’ll be transferring to a UC in a year either as an English or Psychology major. I’m debating between pursuing a career as a high school English teacher or as a social worker who does counseling.

I was born on September 5, 1996 at Tripler Army Medical Center in Honolulu, HI. Everything was normal, my mom and I were both healthy, I was 7lbs 2.5 oz.

For my first ten months all was well. I hit all milestones early or on time, I could stand on my own and cruise along the furniture. But around then my leg strength declined, I became very fussy, my appetite decreased. At my first birthday my parents noticed that I was very pale and didn’t smile much, I smushed my cake but I didn’t eat it. I weighed 16lbs at 13 months.

My mom took me in to see my doctor who assured her that this was nothing to worry about, and told her she was just being a hyper anxious first time mom. He set up an MRI in another month to check for aortic stenosis. But on October 13, 1997 what my parents were shown was that I had a tumor the size of a cantaloupe in my chest.

The tumor was located in the posterior mediastinum and encased the aorta and vena cava, as well as other vessels and structures that weren’t visible in MRI. There were finger-like projections entering the vertebral foramina around the T7 level compressing my spinal cord resulting in my leg strength declining.

They started chemo before any surgery was attempted because of the size and crucial area of the tumor. I was diagnosed with stage 3 neuroblastoma. There was no evidence of metastatic disease. Because of the size and the fact that I was diagnosed after 12 months I was given an unfavorable prognosis, they were told I was unlikely to live to be 2 years old.

I received a round of chemo every 3 weeks for 6 months. My parents loaded up a wagon each time with a TV-VCR combo, a bowl of potpourri, blankets, toys and my bear. I had a couple bouts of neutropenia, and there was one point where I became septic and it was uncertain that I would make it.

Chemo finished in March 1998 with no tumor shrinkage. My surgeon chose to perform a laminoplasty involving T4-T12 to remove the part of the tumor invading the spinal canal. Debulking was successful in April, but in May the lamina had not fused back with the rest of the vertebral column so the surgeon decided to remove the bone with a laminectomy. At the time he reassured my parents that it would not affect the stability of my spine, and in hindsight this was probably considered a safe assumption since they were not expecting me to survive beyond 2.

In May a biopsy revealed that my tumor was only 5% neuroblastoma, most of it had turned into a ganglioneuroma. It was bittersweet, the tumor would likely not continue to grow much but it was no longer going to be receptive to radiation or chemo. Our oncologist told us there was nothing more they could do for me, and my family moved home to San Diego. Over the next year I was involved in a variety of clinical trials at UCSD and UCSF, none of them resulting in any change good or bad. But I remained stable and I enrolled in mainstream school.

My favorite human being, my baby sister was born in January of 2000.

Around then I got my first wheelchair. I remember being super excited when I got it, it felt like a toy. We were neighbors with another girl named Emily who also was in a wheelchair. We were even on the cover of Road Runner Sports Magazine together, and both got free handcycles.

In 2003 my parents got divorced and my mom moved my sister and I into an apartment.  My mom remarried in 2004 and in order to go to law school she moved my sister and I to San Francisco with her new husband. Shortly after that my dad moved to Washington D.C.

In San Diego I went to an elementary school that was very friendly to kids with disabilities, disabled kids were integrated into classes with everyone else. In my second grade class there were three deaf kids, and we had weekly sign language lessons so that we could communicate with them better. Everyone treated each other equally, I was actually pretty popular because the able-bodied kids always wanted to play with my chair.

I had a few more issues when we moved to San Francisco, because my school kind of sucked, and because I was getting older and had some issues with mean girls and that kind of thing. I had to take an elevator to get to my classroom, and I had kids pretend to be my friend to get to ride the elevator with me. There were a few times that the elevator broke down and I had to be carried up several staircases.

Two years into living in San Francisco I started middle school. The vice principal at Presidio Middle School was in a wheelchair so my school was already very wheelchair friendly. I made friends pretty quickly and 6th grade was a good year. There were a few mean girls and gossip. I started to feel more self-conscious about being in a wheelchair, especially when some kid in my home ec. class started talking about how I was gonna be a virgin my whole life. I started feeling aware of how skinny my legs were, or at the time how hunchbacked I was.

 That year I was seen by my urologist to talk about a potential surgery. By that point my independence was becoming a growing concern. At 11 I was still having to wear diapers and have a nurse come to school twice a day to help me, but I started doing stuff like taking city buses myself. Being a middle schooler in a diaper was very stressful, I was perpetually afraid that my pants weren’t pulled up all the way. My urologist offered me a way that would give me more independence and eliminate any reason to wear a diaper again. And that was an ACE Malone and Mitrofanoff bladder augmentation surgery. He would augment my bladder, create a stoma so I could cath myself, and would create a stoma in my belly button that I could flush water through to irrigate my bowels.

At 11 the idea of this surgery was utterly terrifying. By this point I had no real memory of any serious medical experiences, MRIs were the worst of what I had been through that I could remember. They were still having to put me under anesthesia, which terrified me, I was afraid each time that I wouldn’t wake up. There had been one run in with an orthopedic surgeon who did a consultation on my back. The fall-out from the laminectomy meant that my back was slowly curving with scoliosis and severe kyphosis with compensatory lordosis. He reacted very strongly and almost emotionally when he saw me and my imaging, and now I can understand as an orthopedic surgeon seeing the way my back was would have completely baffled and enraged him. But his extreme reaction was enough to traumatize me. My memory of that day was that he told me my spine was going to tear through the skin on my back and I would have constant bandaging to cover it unless he did surgery right now.  

I did not have spine surgery at this point, so I assume my 10- year old brain morphed the memory and my mom was able to calm me down. But this was my point of reference when it came to doctors offering surgical procedures. So the idea of this major life changing surgery was something I wanted to decline immediately, even with acknowledging the life changing benefits. They gave me some time to think about it, and with the incentive of improved independence and lessening the burden on my family, I decided to go through with it.

So the summer after 6th grade I went through this major surgery. The initial surgery went very smoothly, and I went home after being in the hospital for less than a week. One thing that I did learn to be aware of was that UCSF was a teaching hospital. My surgery was not one that many had seen done before so I had lots of different people coming to see me. My surgeon also had a lot of med students come in with him when he did rounds. Lots of people coming in your hospital room all gathered around your bed staring at you at 5am is just…not great. It’s always nice when there’s a kind or understanding smile, or a pat of my hand, something that suggests that I’m not just a specimen.

I went home with three tubes in my abdomen. It was the first time I couldn’t move around on my own. I had to call for help whenever I needed something, and I got incredibly frustrated and felt very hopeless. We had a home care nurse who came to help my mom (who was already awesome on her own at taking care of my dressings by the way) who taught me something that I have remembered a lot in the last few years. She was an awesome nurse, she’d lay out all these supplies and teach us how to use them, show my mom how things were looking and how to take care of everything and telling me how to move and what I shouldn’t do. One day she noticed how thin and raw my ankles were from my childhood of crawling around and sitting in a chair with my feet close together on the foot plate and offered to bring in moleskin wraps for them. And for whatever reason that set me off sobbing.

She sat me up and grabbed my hands and told me that I needed to give myself a very brief time to wallow and feel hopeless, and then I needed to turn it into anger. Sadness is not an active emotion. Sinking into it never helps. Anger is active and aggressive, it incites action. I’ve come to think of it as the way that cold is the absence of heat. It’s important to have your feelings validated, and having someone but especially your doctor or nurse sit down next to you and go “You know what, this is completely unfair and totally sucks” is a way of appreciating what you’re going through. The amount of suckage should be widely and fully understood, and then a plan should be made to minimize it.

I hated, and still hate, whenever something as seemingly irrelevant and menial like ankles rubbing together (like who else has to worry about that?) involves some very visible and mildly annoying way to take care of it. I have a constant blatant sign that I carry that tells everyone that I am different. Every single little addition like freaking moleskin bandages just feels like another chip away at the image that I am in any way normal.

After a couple weeks of healing at home we came in for a follow up VCUG to check how my bigger bladder had healed. We were excited about potentially pulling out the main big drain. That thing was giant, the tube was like an inch wide and the bag was as big as my torso. When they hooked me up to the contrast, and everything looked pretty good, but something happened and I left the hospital after throwing up and with a pain in my right shoulder.

We came back in later that night and it was realized that my bladder had been popped. I only have a couple very clear memories of that visit because I was very delirious, the rest of it was a blur. I remember my little sister leaning over my bed telling me that my dad was flying back out from DC. I remember eating a banana and throwing it back up. I remember my mom arguing with a resident. Parents input shouldn’t be overlooked, they know their kids and what their baseline is. My mom had been trying to tell them that my stomach was abnormally distended but that had been kind of brushed aside. My mom has been my main care giver with my medical stuff my whole life, she knew something was wrong as soon as we left the hospital.

I became septic and came close to not making it, I had emergency surgery where they dealt with my very infected insides and repaired my bladder. I went home a week later. There weren’t any complications with the ACE Malone.

The next follow up VCUG went well, they pulled out the two biggest drains but I had a small drain still for my urinostomy, which I had in when I started 7th grade. I had an appointment on the second day of 7th grade to get it taken out, and we noticed how much my one day of school had wiped me out. I had lost a lot of weight, I was under 50 pounds at 12 years old. They decided to have me skip the first semester of 7th grade to recover and gain weight. I was told to stay home and eat corn dogs and drink chocolate milk. And I was more than happy to comply.

When I went back to school things were different with friends and I had lost a lot of my upper body strength. After that point I started to struggle with depression, which continued when that summer we moved away to North Carolina where my step-dad was from.

I started 8th grade at Phillips Middle School after spending the summer with my dad and his awesome partner Joe who had become a big part of our lives. I missed San Francisco horribly, it was a pretty massive transition. My first week of school was eerily silent. Only one kid had talked to me, and everyone else seemed to stare at me. That Friday we were doing an “interview your classmate” activity, and after I introduced my classmate to the class I decided to address my whole class. I explained that I’d been unable to walk since I was a baby, that I’d moved from San Francisco, and that I was here for good and that I’d rather they ask me constant questions than continue ignoring me. After that things were good, but not great. I still dealt with depression, I would go home every day and watch The Office rather than do homework. A decision I honestly don’t regret much. I had a kid tell me he doubted whether it was as hard to be in a wheelchair as I made it sound and that I was ungrateful for the accommodations made for me, which stuck with me for a few years.

Life at home was not awesome in North Carolina, and school got worse as I started high school. I started seeing a therapist at UNC and joined a Cancer Support Group. Which at the time sounded like a good idea, but I felt very out of place. I have always had a hard time calling myself a cancer survivor, because I have no memories of my treatment. I felt like I didn’t have the right to call myself that name because of the girls I was surrounded with who had no hair and were missing ovaries and couldn’t breathe without cannulas. I still feel unworthy of labeling myself that way but there it is.

Freshman year sucked. Most of my friends forgot about me. The best part of my day was my theater class. I kept barely doing homework and watching The Office. I sat alone at lunch in my oversized Team Edward sweatshirt.

I underwent sleep studies at UNC and was diagnosed with severe sleep apnea and given a bipap machine. I was seen by a pediatric oncologist for an annual check in, which consisted of her informing me of every possible long term side effect of the chemotherapies and treatments I underwent. She threatened me with heart problems and leukemia later in life. She introduced the idea that my cancer after all could come back. It hadn’t really occurred to me before that that might be something I should worry about. I try not to think about that, as it is a very distant and remote possibility.

In January of 2012 half-way through sophomore year my dad helped move my mom, my sister and me to Silver Spring, Maryland, closer to him and Joe so that we could get away from my step-dad who had revealed himself to be unfit for his role in our lives. My start at James Hubert Blake High was rocky but I met a really awesome group of girls a couple days in. I took three AP classes junior year and went to prom.

There was one incident while we were living there where I was having chest pain. I was having sharp stabbing pains whenever I inhaled. We went in to see a doctor who did some breathing tests, which are things that doctors are never happy with, my lung capacity is crap. But as someone who had never seen me before but knew that I had cancer, decided to float the idea that my tumor had started growing again and was compressing my lungs. So my dad and I got in the car and drove over to the emergency room, one of the worst car rides I have ever experienced. I stayed overnight for two nights, as these doctors put me through test after test. Nothing was ever detected. We think it was gas pain. Sometimes when I’m seen, not recently so much since I’ve been back at UCSF for a few years,  I’m often looked at as a bit of an enigma and kind of scary to try to figure out. It’s easy to jump to the cancer being a cause, but a dose of reality would have been helpful.

In April of 2013 my dad accepted a job in Fairfield in California, and in June my sister, Joe, and I joined him. My mom struggled to find work near us but eventually had to move back to North Carolina where she had a law license. I started senior year at Benicia High School. Benicia is a small close knit town, with only one middle school and one high school, so everyone was very close and senior year was not a great time to try to break into friend groups. I had a hard time making friends but eventually found a few. I had a similar experience that I did in 8th grade, and in April I had finally had enough and wrote what I wanted to be a small op-ed for the school newspaper to try to normalize my presence there. One of my friends was the editor of the newspaper, and made it into the main feature of the issue. I got a lot of compliments but also heard a lot of criticism about how it did the opposite of its intended purpose and made me more of a public figure, and they wondered if that was my actual intention.

My back had progressively bent into an acute angle and my pain level had been steadily worsening. I did a few weeks of independent study, and was seen by the pain clinic and Dr Mathay in oncology and got put on nerve and muscular pain medicines. This was the first time I’d been prescribed a long term chronic medication, I was very proud of the fact that I had never had to resort to pain medication before, so this felt like some kind of failure. I saw Dr Burch at the Spine Center who proposed a summer surgery to straighten my back and improve my circulation to my legs, which tend to be on the purple side. It was planned so that I could still go away to college in the fall.

I graduated in June 2014, and at the beginning of July I was admitted to the hospital. Dr Burch talked to me before the surgery about severing the damaged part of my spinal cord while operating to minimize the possibility of a syrinx building up. After a couple hours of thinking I decided to allow it. This was a decision that I had a hard time with, because it meant that in the future if there were ever treatment available I would be ineligible. So I will never walk. Which is a reality that I still struggle with at 20 years old.

It took place on July 3rd, I was in the OR for 12 hours. I woke up and was still high on the anesthesia, and my face was puffy. My family recorded a particularly embarrassing video of me ranting about the writer of a couple of my favorite tv shows. But I didn’t improve beyond how I was when I woke up and I started to get worse. I don’t remember much after the first day after waking up. I couldn’t breathe on my own, and it looked like I might have to use a bipap 24/7, and I wasn’t maintaining my BP. Three weeks later I had survived a couple bouts of pneumonia, I could be taken off bipap, and my BP stabilized. My back was beautiful and straight, if a few vertebrae shorter, and my chest was flatter which in this case was a very welcome change. I lost sensation a little higher up on my torso, which is still frustrating.

I was essentially unconscious for three weeks. I only remember the last few days before I went home. I did not get to go away to college. I was able to sign up for one online class at a local community college, but I was mainly focused on recovering at home. I got a job at an elementary school in February of 2015 as a student supervision aide, opening ketchup packets and milk cartons. It was nice to be around kids who eventually learned from me that wheelchairs aren’t a big deal.

In October of 2014, after I had started to feel like my old self, I was sitting up in bed one morning before getting up and I snapped my left femur in half. My dad took me to John Muir since it was closer, where I was asked repeatedly how I could tell my leg was broken if I was paraplegic. I will leave you with the image of when Gilderoy Lockhart removes Harry’s bone in his arm in Chamber of Secrets. I realize everyone’s nerves work differently, and some spinal injuries are incomplete, so it’s necessary to check for sensation, but I am asked frequently each hospital visit I have ever had if I can feel “this”. It’s super annoying, and when I’m already dealing with some other crap, having to remind doctors that no, I can’t feel my legs, I can’t walk, it becomes very disheartening.

I was transferred to UCSF and I was put in a brace and told to come back in a few weeks. My mom came out to help take care of me. Healing was not successful, transferring me in and out of my chair, or bed, or the car is hard to do without moving my legs. When we went back in they decided to insert two Nancy nails to hold it in place, and a few months later my leg had healed.

In May of 2015 I was reaching for a grilled cheese sandwich and my right femur snapped in half. My mom took me in and we immediately asked for Nancy nails to be placed to speed the process. This break was a few inches higher up on my thigh which made healing much more difficult so this healing took a bit longer.

As a result of so much freaking prescribed bed rest and being hospitalized and various braces, I developed several pressure ulcers. One on the inside crease of each of my hips, one on the inside of my right knee, and my favorite, one on my left ischial. I was hospitalized several times for them to be debrieded and have wound vacs placed.

Dignity is one of those integral things that really needs to be protected. Having a pressure ulcer on your (sorry but) ass does not provide room for dignified situations. Getting your period while being stuck in bed does not either. Nor does watching Jesse sing his love for Becca while being hooked up to heart monitors and using your bedside commode. And of course that night I had a young attractive male nurse. Dignity is something that tends to fall off the radar when you’re dealing with a crisis, but it really shouldn’t be.

Try not to assume things about your patient based on simply their medical history. I was 17 before it occurred to me that I had never been seen regarding women’s health. I have been referred to so many different specialists for so many different absurd reasons, but it was up to me to make an appointment with a gynecologist at 18. Which is fine, it’s up to me to advocate for myself but I did kind of feel like my identity as a woman had been disregarded. I had started to assume things. I assumed that me having kids was not a possibility, and (this is going to be super fun to talk about with my dad in the room) that having sex was something that just couldn’t happen. I had to go seek out other doctors and ask uncomfortable questions in order to find out that both of these things were possible, and to get something as basic birth control taken care of. These are super important things. Just don’t leave it out because it’s not an area of critical concern, or that you figure your patient will just assume things.

The last year I have finally gotten back to real life. I quit the elementary school so that I could go to school full time. I got a 3.8 my first semester back, I hate Chemistry. I’m almost half way through my associates so that I can transfer. I have a super cool motor attachment for my wheelchair so that I can get around on public transportation. I’ve been trying to find work and support myself so that I can move out, which has been fruitless for a frustratingly long time. But I still have severe pain, deal with depression and anxiety, and the last few years have me living in perpetual fear that something new will come up to mess up what progress that I’ve made.

As I’ve gotten older my fears are less and less about hospital stuff. I can get an IV placed without even reacting, I watch them do it. I’m still not a fan of anesthesia, but I think that’s pretty normal. And I will always be afraid of my back recollapsing or my tumor waking back up, or some other side effect of my chemo.

I constantly worry about the impact I have on my family. Financially, emotionally, psychologically, I think all the time about how much easier they’d have it if they didn’t have to deal with me. It makes me push myself harder to make up for it, by nature I’m a very type A neurotic person, but I often fall short of my expectations, mostly because I am only human and always tired and have much higher standards for myself than I really should. I’ve worried about going to my sister’s school with her, or having her friends see me, if they see that she has a disabled sister that she’ll be treated differently. I think about what experiences I’ve missed out on that I won’t have any advice for her when she goes through them. Or just the fact that she has done so much more to help me than a normal sister is ever expected to, and what the long-term affects will be when she starts to live her own life without me.

This fear has led to me fearing that I’m too much trouble for anyone other than my family to want to deal with, that I’ll never be able to relieve them of me. That to any outside or new person I’m just going to look like too much of a hassle or like I’m something that will hold them back. I’ve assumed for most of my life that no one would ever find me attractive or bother to think of me romantically, an assumption I realize might have been premature. I’m afraid that I’ll miss out on having building my own family and life.

I’m afraid that I won’t know that I’ll miss out on. I am chronically tired and in some kind of pain, and there are some days that I am afraid to leave the house because of how people look at me or treat me. People whose lives are harder are not in constant need of people acknowledging it, I forget most of the time that other people don’t deal with what I do. When I think about the future, my wheelchair is often something I forget to factor in, it’s a limitation that I have to consciously include. I get honked and waved at when I walk around, or clapped at when I go out to dinner with my family. I try to live as inconspicuously as possible. I’m considered a strong person because of what I deal with, but I wasn’t really given another option.

A lot of the information I shared might have been irrelevant from a health care perspective, but I felt like it was important for me to go through it. I have been seen at several hospitals, been treated by dozens of doctors. I have been asked about my medical history so many freaking times, and every time it makes me feel more and more like a file on the computer. So I decided to make everyone super uncomfortable and overshare, just to illustrate how much there is behind the person that you’re asking to repeat what seems to them to be some of the least important information about their lives.

At this point, if there are any questions, I’d be happy to answer them, about anything, no filters.