Juvenile Idiopathic Arthritis (JIA)- “causes persistent joint pain, swelling and stiffness… [it] can cause serious complications, such as growth problems and eye inflammation. Treatment… focuses on controlling pain, improving function and preventing joint damage” (Mayo Clinic).
Gina: I think the memory of it now is that we went to 50 doctors visits in 9 months, and we went to the Feldenkrais lady*, that was the most memorable to me…she had her hands on Eleri the whole time but she wasn't massaging her. I don’t know what it was but it probably helped a lot…
[* Feldenkrais is a method of physical therapy that aims to “re-educate the nervous system and improve motor ability”— http://www.indigocenter.org/health/Feldenkrais.htm]
Eleri: It was like a spiritual thing…
Gina: We went to a chiropractor which was probably the worst thing I could have done, but she said that she felt better afterwards. But of course somebody with bad joints, you shouldn’t be taking them to a chiropractor. We went to cranial sacral therapy— that didn’t help— and regular massage. I think the weirdest thing is that Eleri had complained about being stiff a couple times when she woke up and —
Eleri: My fingers
Gina: Her fingers were stiff, and you don’t even think anything of it and then it wasn’t until this little girl yanked her head and gave her whiplash on a field trip.
Eleri: Oh yeah, yeah…
Gina: I got there just a minute after it happened and Eleri was just screaming crying because her neck hurt so bad, and after that, this was in her 2nd grade year, that’s when we started going to physical therapy because it was really bad and she couldn’t lift her head. So she spent probably… 9 months walking around where she couldn’t lift her head up. She had special treatment at school like she didn’t have to sit on the floor, she could sit in the teacher’s chair and we kept going to treat the whiplash because it wouldn’t go away.
Eleri: I remember at recess, I think this was before it was very bad, but we would be playing tag and I would be like oh man my hip hurts, but I could still run even though it was still sore and when I would stop it would hurt a lot. My friends didn’t really seem like they believed me because I was like oh it hurts now that I’m running.
Gina: I remember one time when we were walking and she was limping really bad and the whole stream of kids just going by us like a house of fire. Like you don’t realize how fast people in the world move, and it just felt like we were in slow motion with all these people streaming around us and I was like this is not right.
Eleri: Remember speed bumps?
Gina: Yeah if I went over a speed bump or railroad track she would be in the back seat screaming
Eleri: and the multiple pillows thingy
Gina: She had to pile 3 pillows in order to lay down and sleep and then we would slowly take each pillow away… so that’s not nice, when you’re 7 or 8 years old. But part of the problem was maybe the whiplash set the doctors off target… oh and then the pediatrician wanted to give her Botox injections! I don’t remember why now…
Eleri: And then after my procedure remember I had to get a wheelchair and then I just sat there for the rest of the day?
Gina: She had to have steroid injections at the very beginning
Eleri: Ew, that hurt so bad…
Gina: Because she could hardly bend her wrists and neck again it was just stiff but after those injections she was much better within a month.
Eleri: [Referencing her hips] When I would walk it would hurt a lot
Gina: I do remember that I had to lift her into the tub, she couldn’t step over the edge.
Eleri: Remember when I wanted crutches like really bad?
Gina: Yeah she started asking for crutches…
Eleri: and my mom was like ‘no!’
Gina: But if they hadn’t… if there was no medicine, she would be in a wheelchair for sure. That’s crazy isn’t it? and in a lot of pain too.. the steroid injections they started her on, do you remember—
Eleri: I hated methatrexate so much…
Gina: It’s the first step, that’s one of the big things now, insurance companies make you do step treatment because methatrexate is $90 a dose and Humara is $4000 a dose.. or maybe $2500, don’t want to exaggerate. So they gave her the drug that literally makes her sick afterward and she had to do that once a week. But it took her 2 or 3 days to not be sick, so pretty much half of her time was being sick… and she was on that for a year
Gina: We were in physical therapy here locally, they transferred us… and they kicked us out of physical therapy without talking to us… Eleri started going down the hall and she was limping so bad, near Halloween and she couldn’t even walk a block. We went to urgent care and that crazy doctor… that was the first time somebody said arthritis. He kept shining lights in her eyes and looking at her fingernails because I think arthritis can make you go blind, so he was checking her… he said we think she has arthritis. They referred us to Duke Rheumatology and Dr. Dvergsten and when we went he was just… compared to the other doctors… he was so delicate with how he tested her joints and instead of her screaming out like with the other doctors, he was very nice and gentle.
Eleri: Now he jerks my joints and stuff all the time!
Gina: He immediately said she has arthritis and it was like a whirlwind where suddenly you’re sitting there and they say you have arthritis and then the nurse comes in and flings all this stuff at you like you go from one day nothing, to the next day you’re going to shots all the time.. it’s kinda like having diabetes I guess.
Eleri: Yeah I remember it was like really scary when the nurse was demonstrating to you how to do [the injection] with the fake bubble thing, and you were doing bad
This comparison is useful in understanding the reason for Eleri's pain. While this is a graphic of R.A. the mechanism in the joints is the same for Juvenile Idiopathic Arthritis, only difference is age group.
Gina: Her third grade teacher was very impressive, she gave her a lot of special care and even the music teacher would say ask how she was doing. The only bad mental experience was about the shots. We transferred between me and home health, because it was hard for me to give her shots
Eleri: I hated it and we had to go to a therapist about that…
Gina: Which didn’t really help
Eleri: She just scared me!
Gina: She had some weird sort of machine…
Eleri: Yeah! I remember that! Why’d she do that again?
Gina: It’s a reprogramming thing, you’re supposed to watch the lights to reprogram—
Eleri: She flashed lights in my eyes and I was like what are you doing?
Gina: Well so you think about the bad experience and she does this light flashing thing... but anyways the shot thing was mentally hard and Eleri was really mad at the little girl who pulled her neck
Eleri: I felt like it was all her fault
Gina: This was in the Spring and Eleri was still hurting in the Fall. She was in school with this girl and the principal set up this meeting where the girl apologized to Eleri for pulling her neck.
Eleri: … me and the girl were like best best friends before
Gina: I think it was disappointment in some of the physicians, the doctor at UNC who kept having us come back instead of telling us to go to someone else, or physical therapy where they blamed the patient, or the pediatrician who really didn’t know what it was, you would have thought he would think of this, and for months she’s in pain and he wants to give her Botox shots? So we switched doctors…
Eleri: Remember when I lost like 10 pounds because I could only eat Ramen noodles?
Gina: I was at the pediatrician’s and her growth on the chart for kids was dropping
Eleri: It was because I could only eat Ramen noodles because it was the only thing that would go down my neck because I couldn’t swallow when my head was down
Gina: I think she was barely getting through the school day, just sitting here in misery for a few hours, and then she would sleep a few hours so she could do it again the next day.
Eleri: I would usually not be able to go to sleep fast, and I’d wake up a lot so I’d have to do my homework in the morning a lot and sometimes my mom let me sleep for another hour and let me be late for school
Gina: Not often.. I should have let her do it more, she did not miss a day of school!
While you listen to the above clip from a running MRI machine, imagine laying on your stomach with your arm stretched out above your head. You're face down on a cold white table and your hand is placed in a plastic cage lined with linen and a tech puts puffy headphones on your ears to stream music from a genre of your choice. Above you is a white ceiling that has 3 tiles by 7 tiles swapped out with plastic images of flowers and cherry blossoms over the light bulbs. These fixtures might be a momentary distraction for some people, but today the scan requires you to look at the table and not the decorations. A pillow is placed underneath your legs and you are instructed to stay very still until all the scans are done or they will have to do them again. An MRI tech brings out supplies to inject a dye, called contrast, into your bloodstream through the IV line that was placed moments ago. The tech moves the table with a button and you are now sliding forward into a small circular space. Once the tech leaves the room they will begin the machine, creating the sounds you hear right now. The machine is so loud as it whirrs that anyone in the room has to wear earplugs to preserve their hearing. Stay incredibly still. After the first half hour your shoulder begins to hurt because it is hyperextended for the scan, and your other arm is falling asleep. You try and pretend that you can enjoy the music and maybe if you just focused enough you could relax. But the MRI machine's sounds can be felt in your body, and the discomfort from your position and extended stillness will not allow you any relief. The machine whirrs for another 10 minutes, and the tech calls out to you through the microphone in the machine's tunnel. He tells you 'stay still! We have to re-do one of the scans!' and you grit your teeth and stay still to avoid being here a moment longer. Finally, the machine winds down, and you have lost all sense of time; it's been 1 hour since you entered the machine. When you sit up, all the blood rushes to your head and you feel faint, and they remove your IV line. You can finally stand up and leave the MRI room.
Now, imagine all of this happening to you when you were 12 years old.
Photos by Eleri
Eleri and I met through a course at Duke University lead by Dr. John Moses in the Center for Documentary Studies. Students, like myself, teach photography to children and young adults with long-term illnesses (including arthritis, various types of cancers, and blood disorders) for one semester. Through this program the children are given a chance to convey their own stories of illness to be shared in a public exhibit at the end of a few months time.
I began meeting with Eleri about once a week and we would look at her images from the week, talk about her inspirations, and address any concerns she had. After collaborating with her for the images I made of her and the images she made herself, we decided that it was important to show some of her photographs as a part of this photographic inquiry.
Notes from Eleri's Journal:
My MRI weekend-
- The whole day I was pretty excited because I got to leave school early for an easy little X-Ray
- I was bragging that I might be able to stop my meds
- When we got [to the medical center] I found out I was getting an MRI not an X-Ray which was a little worse but last time I had one it was fine
- When I got in they said I had to have an IV- I had never had one and I was scared but it didn't hurt that bad
- Then we went in the MRI room and they put my hand in this really uncomfortable position and the guy was sorta rude
- I kept thinking we were done but the prints just kept messing up
- I got music but I couldn't even hear it
- When I got out I couldn't see and my head hurt real bad