In the bathroom of my hospital room after my wound was re-closed after it was infected — my third brain surgery of 2018. During the surgery, the infected ventriculoperitoneal shunt was removed from my brain, a titanium mesh plate was attached to my skull, and a team of plastic surgeons re-closed the wound.
Spring 2018
This semester I've taken a break from school because of medical issues. To summarize something in a sentence that my doctors have written novels on, it started with headaches in early November, and since has turned into something that has required four brain surgeries, 12 lumbar punctures and weeks of hospitalization. The working diagnosis is that it’s some kind of fungal meningitis, but I’m at the best hospital in the world for neurology and neurosurgery, and to be perfectly honest nobody knows.
Over the last four months, I've spent about eight weeks in the hospital, starting with Abbott Northwestern Hospital in Minneapolis, and then after doctors said they didn't have any new ideas or tests to try on me, I spent several more weeks down at Mayo Clinic in Rochester, Minnesota.
At first, during December and January, I felt too lethargic and my eyes were too light sensitive to do much. Looking at screens was unbearable, so I didn't stay in contact with people, and moving my head or neck would often trigger even stronger headaches.
But during my February admission I actually felt alive, and spent a lot of time talking to doctors and nurses. And at the advice of fellow photo person Courtney Pedroza, I started doing a bit of a photo story on my experiences.
Dalton, a Neuro-ICU nurse at Mayo Clinic in Rochester, Minnesota, is reflected in a mirror on Feb. 18, 2018. In the neurological intensive care unit, patients are always watched by at least one nurse, so two walls of the rooms function as observation windows. I stayed in the unit for several days with an external drain in my head, which meant I had to have nurses make adjustments every time I shifted position or went to the bathroom. The external drain collected excess cerebrospinal fluid in a bag while I was treated with IV antibiotics to clear a bacterial brain infection that caused two grand mal seizures and brain swelling.
My mom yawns after arriving at Mayo Clinic around noon Feb. 18, 2018. She had driven down from Minneapolis after spending the night at home with my younger sister. Because I had been ambulance-transferred from St. Paul, only my father was at Mayo for my second brain surgery, the one to remove the infected VP shunt. My mom had been with me the previous two days, during my two seizures and a 36-hour stay at Regions Hospital in St. Paul. We’ve made the drive from Minneapolis to Rochester, which takes about an hour and 25 minutes, more than 20 times in the past six months.
I spent five days in Mayo Clinic’s neurological intensive care unit with an external ventricular drain stapled to my head. The drain, or EVD, served as a temporary shunt to relieve intracranial pressure. My case of meningitis presented with highly elevated intracranial pressure, causing two serious complications: debilitating headaches and seriously swollen optic nerves, which caused blackout vision and threatened my sight. My first VP shunt, inserted Jan. 2, 2018, was placed to partly relieve those headaches and to keep me from going blind. I didn’t learn until weeks later how high the risk had been of me losing vision.
Dr. Megan Kaszuba, a neurosurgery resident at Mayo Clinic in Rochester, Minn., poses for a portrait at St. Mary's Hospital on Feb. 21, 2018. Kaszuba, who got her medical degree from Rush University Medical Center, has been a resident at Mayo Clinic since July 2016.
At first, a big part of why I spent time working on this project was because it was a way to cope with the boredom of being stuck in a single room all day. After I got a shunt infection that triggered two seizures, I spent five days in neuro-ICU with a drain coming out of my head. The drain meant that I had to ask the nurse every time I even adjusted the height of my bed — never mind stand up or use the bathroom.
So in this set of photos, the picture of my mom yawning comes from that time, as does the photo of my nurse reflected in a mirror, and the close up of my head with a yellow tube (the drain) stapled to it.
This series is definitely different than what I’ve shot in the past. Part of that is because I took everything with a single 50mm, which is something I'd never tried before. Another big difference I’ve noticed is that I haven’t been as scared to “cross boundaries” as I have been in past photo stories — when you’re telling your own story, you know your own boundaries.
After weeks of hospital stays at three different hospitals in Minneapolis, St. Paul and Rochester, Minnesota, I discover that Mayo Clinc's breakfast burrito and hash browns are a solid combination. Because I was struggling to get enough nutrition, I could also order off supplemental menus, which was helpful when I was on medications that took away my appetite.
My hospital bracelet and "fall risk" wristband on Feb. 18, 2018. The end of my clinic number is blurred out of the bracelet for security reasons.
Mayo Clinic RN Ryan Tucker makes notes following the insertion of my second PICC line on Feb. 21, 2018. The PICC line, or peripherally inserted central catheter, essentially functions as a long-term IV, and are often used for antibiotic courses and medication that is hard on veins.
As I got more into the project, I started looking for ways to expand it. That’s part of the reason I started taking portraits of my doctors and funny details I found around the hospital. Who would have thought a hospital would have a balloon of a sad face in the hallway?
When it came to taking photos of doctors, nurses and other staff after treatments or during rounds, I think some of them were a little confused, but they were good sports about it. I tried not to waste anyone's time (too much). I'm grateful to them for humoring me in my little personal project, but since time with them is so important to my treatment, I usually only take a couple of shots, usually fewer than five. I think this has made me spend more time thinking about what kind of picture I need before I go into a situation. Many of the shots in this collection come after me spending a whole appointment thinking to myself “ugh I really really really want a photo of that spinal fluid, is it weird to ask her to hold up my spinal fluid??” I think that level of anticipation has added focus to the shots I ended up taking.
It has also taught me first-hand how visually dramatic medical care can be. I think I have a personal insight into the tensions and emotions that are at play in these situations, and at the moment no topic interests me more.
My IV antibiotics and the saline flushes are laid out on my dining room table in Minneapolis, Feb. 26, 2018. I was on these antibiotics for about three weeks to get rid of the a lingering bacterial shunt infection. Because I had to have infusions every 12 hours, I had a PICC line placed so my mom could administer the drugs at home rather than at the hospital or an infusion center.
My mother injects me with cefepime, an IV antibiotic, at my dining room table in Minneapolis, Feb. 24, 2018. I was on these antibiotics for about three weeks to get rid of the my shunt infection, so I had a PICC line placed, which meant I could be injected at home instead of in the hospital or at an infusion center.
My arm is wrapped up for a shower with a peripherally inserted central catheter, or PICC line, Feb. 26, 2018. The PICC line, which functions as a more permanent version of an IV, cannot get wet, and I finally learned that a combination of saran wrap and plastic bagging is the way to go.
I think the detail shots are equally key to this story as the portraits have been. For example, that photo of the white bag around my arm was a shower sleeve. I never would have guessed one of the worst parts about having a PICC line for weeks at home was showering, but trust me it is. Water somehow always gets in, even when I taped it so much that it strangled my arm and ripped hairs off when removed. I'll admit that the discomfort of wrapping an arm like that pushed me to put off many, many showers.
Another detail I fixated on was the pill bottles. The photos of pill bottles featured in this series isn't even all of them.
See, I never thought I’d be the person with the overflowing pill box — I'm 19 and have been completely healthy up until last November. I’d never taken more medication than melatonin and birth control. Now, I take 10 pills every morning and six every night, and I’ve got a whole set of backup meds for if something goes wrong: pain level 1, nausea level one, nausea level two, even an oxycodone prescription.
Dr. Mark Enzler, the attending physician who leads my infectious disease team, stands for a portrait in his office, March 8, 2018.
My mother and I update my medication list before an outpatient neuro-ophthalmology appointment, March 8, 2018.
I bring about half of my prescription bottles to an overnight stay in Rochester, Minn., March 7, 2018.
One of the nurses from Coram CVS Specialty Infusion Services looks at the materials included in the packages for changing PICC line dressing, Feb. 26, 2018.
These experiences have also made me incredibly passionate about covering health care issues, medical issues and problems with access to health care. It feels so much less abstract and political of an issue than before — now, for me, it's a matter of all these intense and moving experiences so many people go through, and so few people talk about.
I already had done a photo story on health care for the homeless in Phoenix during fall semester, working with an organization called Student Health Outreach for Wellness. Basically, they provide simple health care services for people who live on or around the Human Services Campus in downtown Phoenix. That experience really put into perspective how basic yet how insurmountable a lot of people’s barriers to medical attention are.
One of the biggest struggles I have learned about through my work with them is just keeping and filling prescriptions. I try to think about how I would have done this if I didn’t have my parent’s insurance, a car or a fridge to keep my injectable antibiotics cold. The simple fact is, I wouldn’t have been able to.
Dr. Megan Kaszuba, a second-year neurosurgery resident, holds up samples of my cerebrospinal fluid after performing a spinal tap, or lumbar puncture, March 21, 2018. I was re-admitted to Mayo Clinic on the 20th for observation and tests after having a high fever at home. My clinic number is blurred out for security reasons.
A scrap of paper shows a list of questions for doctors during one of my outpatient appointments at Mayo Clinic, March 8, 2018. The outpatient appointments usually take an entire day due to the hour-and-a-half drive and the multiple medical teams I had to meet with — usually a combination of neurology, neurosurgery, neuro-ophthalmology, plastic surgery and infectious disease. On this day, I visited three specialists and had a lumbar puncture (spinal tap) to monitor the white blood count in my cerebrospinal fluid. Since November 2017, I have had 15 lumbar punctures.
I’m thinking about how many hoops you have to jump through just to fill prescriptions at one of the many Mayo Clinic pharmacies, or transfer to a local Walgreens. Or the fact that at one point in my hospitalization I had a Lyrica prescription (a nerve pain medication) that all of a sudden wasn’t covered by insurance, and suddenly we were on the hook for about $800 — but I couldn’t stop taking the medication because it needs to be down dosed slowly, over the course of several days, and I didn’t have the pills to do so.
There are also so many barriers that prevent people who are homeless from getting the level of care that I’ve received. First of all, transportation. I live in Minneapolis. Mayo Clinic is in Rochester, about an hour and a half away. There’s no doubt I’m getting a much higher quality of care here at Mayo than I would have been able to get in the cities or practically anywhere else, and that’s only possible because I have people who are willing to give me rides that last over an hour. I can’t drive for three months because I had a seizure in February, and without parents who have not only a car but enough work flexibility to take the time, I would have been stuck.
Even if I’d been able to get this care, without insurance I would have had over $500,000 in bills. As it is, I hit my maximum yearly out of pocket cap in the first week of January. Without health care and a support system, I don't know what this condition would have done to me.
My mother injects cefepime, an IV antibiotic, into my PICC line at our dining room table in Minneapolis on Feb. 24, 2018. I was on these antibiotics for about three weeks to get rid of the a shunt infection I contracted in February. A PICC line is a thin catheter inserted into a vein that then links to a larger vein that carries blood into the heart. The bruising on my forearm is from a previous IV, one of dozens I had in January and February before having PICC lines inserted.
Samira Zukanovic, a Mayo Clinic doctor of nursing practice who works in plastic surgery, looks at photos of my scar taken during a previous visit after she removed sutures from the site of my brain biopsy and first shunt. This surgical site continues to be problematic and still has not completely healed more than six months later. On the right is my aunt, Kerry Kelly, who was visiting during the appointment, April 13, 2017.
On a more basic level, it's really motivated me to do more photography. At one point I was at a pretty serious risk of going blind, and for someone who's pursuing a career in photography, that would be devastating.
I didn't even know at the time how high the risk was, but afterwards I learned my optic nerve was swollen to five times the size it should have been. It’s supposed to be somewhere around 100 millimeters, and mine was at 512 at its high point. Apparently many people can't tolerate that, while others can tolerate it for a few months before permanent vision loss. Fortunately, I was in the second category. I don’t think I’ve actually come to terms with how terrifying it would have been to go blind. I still have a small “sun spot” — kind of like if you look directly at the sun and then look away — that floats in the vision of my left eye. But if that’s the biggest damage I’m left with, then I’m doing just fine.
While obviously this hasn't been "healthy" for me in the strictest sense, mentally it's given me a level of focus that I haven't had in a long time — maybe not ever. It really puts into perspective what's important and what's not, and I think there are very few things that could really shake me after this. After all the procedures I’ve gone through, getting an IV put in or blood drawn is literally nothing. So if I come out of this in one piece, I think there's a pretty good chance I'll be a stronger, better person.
A wheelchair is loaded up with supplies as my mother and I prepare to leave St. Mary’s Hospital, Feb. 22, 2018.
The Flint Hills Pine Bend Oil Refinery in Rosemount, Minn., is pictured off the highway in between Rochester and Minneapolis, March 8, 2018.
My mother walks to her car on Feb. 22, 2018, leaving the hospital after one of my longer stays at St. Mary’s Hospital. Although there’s a finality to this photo, I have since been re-admitted to Mayo Clinic hospital several times. Doctors continue to treat me for chronic meningitis of unknown origin, although they suspect fungal meningitis, a lifelong illness than may be able to be treated with medication, although they are still experimenting.
Documenting this process has been incredibly therapeutic for me. I think even going back to middle school, it’s been easier for me in some situations to be the photographer than to actively participate, and working on this has also given me something to focus on that isn’t the fact that the pressure in my head is double what it should be.
The way I've ordered these photos might make it seem like there is a beginning, middle and end, but the fact is that this process is incredibly messy and not at all linear. I've been discharged and readmitted more times than I counted, often within the same day or at different hospitals. I've come to expect setbacks and expect to respond differently than expected with a surprising amount of consistency.
I have so much respect for people who have dealt with health issues throughout their childhood. I have only been dealing with being "medically complicated" for less than a year, and it already feels like signing up for a race and then realizing it's a marathon once you've already started.
When you’re having a medical crisis, especially one that lasts months, literally nothing is actually in your control. So it’s nice to have a photo project like this that is in my control, and something that I can be proud of at the end of things.
I take a selfie of my scar in a Mayo Clinic bathroom after my third surgery. In surgery, the neurosurgery team removed an external ventricular drain which had been placed after I contracted a shunt infection and the plastic surgery team re-closed the wound, on Feb. 20, 2018.