Digital Insides

# 2 Hannah Leddy

L:When did you last look at these out of interest?

H: I saw these ones recently when I was looking for them in my bedroom.  It felt weird seeing them again. I don’t look like that anymore.

L: They are surprisingly blue.

H: That is the bottom of my spine, which is the least curved bit. I was 16 when these x-rays were taken, so it’s ten years ago.

L: So you have a curved spine?

H:Yes, scoliosis. It’s quite a common thing that mostly happens in teenage girls.  Quite a lot of people have scoliosis without really knowing about it, but I had two curves, one at the top and one at the bottom. The one at the top was bigger. You get a better view if you look at it on the x-ray.  I found out when I was teenager, and they kept monitoring me. Not everyone with scoliosis needs surgery but because the curve was getting worse and worse quite rapidly, they had to operate. Without surgery it would have eventually affected my balance.

L: So it was quite serious. Do you know what this is?

H: That’s the zip from my trousers. You know when you’re having an x-ray and they put that big belt on you to protect your ovaries. But you can still see all the metal from my trousers.

L: So these x-rays were all taken..

H: …before surgery. I think the mark on it is where they were going to operate.

L: So these are marks made by the doctors?

H: Yes I think they gave this to me to take away so I knew what the process was going to be before I had it.

L: It’s interesting thinking about how they used to give people their x-rays to take home. A material image in a large brown envelope, that patients can look at again when they get home. These look like the actual x-rays, they don’t look like copies.  It seems funny that they would give patients the only copy. Now everything is kept by the doctors.

H: But then I’d get x-rayed again next time I went into hospital anyway…

L: So this is almost 10 years to the day.

H: Yes, I had my operation on the 16th of July I think. I had to have bone scans to check my bones were strong enough to take to the metal. After I had my surgery I kept being reviewed every 3:6 months, then every year. And progressively the curve got better. A lot changed.

L: OK should we look in here?  So when you said it was quite weird looking at the pictures, in what way did you mean?

H: From that point in my life, the curvature of my spine meant everything was geared towards having surgery. It was a major point of my identity for a long time, but now I don’t really consider it to be anymore. The surgery was risky. If it had gone wrong I could have been paralyzed. It took up a lot of my mental thought processes. But now I’ve got through the other side, I don’t think about it much.

L: Did the curvature restrict what you could do? You said it was a big part of your identity.

H: Yes it gave me a lot of back pain. When you’re a teenager and your body is developing and it isn’t doing it in the right way, it made me feel very self-conscious. My back was sticking out so sitting on chairs with a flat back was difficult.  You could see the curvature on my back. You can still sort of see it but it’s difficult to tell. It’s a lot better than it was. If you look at me, my hips are very uneven. One has a small curve and the other has a big one. Mainly, it hurt a lot. Then I went to hospital and the surgeons talked to me in a very clinical way, as a figure. They give me statistics on pain and explained that it shouldn’t hurt because of XYZ. It felt really impersonal when they talked to me about it.

L: So the framework they use to talk to you was….

H: ….very medical. I understand why surgeons are the way that they are, but when you go to hospital you only get a surgeon, there’s no psychologist. They don’t think about how it impacts you in the other areas of your life. It’s simply, x-ray, here’s what you look like, we need to move these vertebrae, cut you up and glue you back together again. It’s quite scary.

L: So there’s little consideration for the whole person. There are a huge number of files on this CD. Do you remember how many times you had to go to hospital?

H:  I had to go to hospital a lot anyway because I also have hypermobility. I needed constant physio when I was younger because my joints were very weak and very loose.  I was born three months early at UCH and was put on a medical scheme were they keep an eye on you for six to seven years. I had to keep going back to have tests all the time. Hospital was a big part of my life until I was 19, then I didn’t have to really go anymore. So I can’t really remember exactly how often but about twice a year from 13 to 17 years old. After these x-rays I remember having CT scans and bone density scans. Just to rule out other health conditions and to be sure I was fit for surgery.

L: Do they think the condition was related to being premature?

H: No. As I have hypermobility there was a concern at one point that I could have Marfan Syndrome. But it also comes with a heart condition that I don’t have. I think they were just curious about me. I got used to feeling like a medical anomaly. I had to my jaw x-rayed too, because I have bad teeth. But they couldn’t fix that problem without breaking my jaw and that came after my spine surgery, which had taken me a year to recover from physically. After the operation, I was in hospital for 2 weeks, in bed, unable to move. I had to have a back brace from the top of my neck all the way down here. I couldn’t wash or dress myself; I had to be woken up by my parents every 2 hours to move me. It was a horrendous experience.

L: Especially as a teenager.

H: I think I’ve tried to block it out from my memory, it was extremely painful. Just lying there in a room full of other teenagers who have had surgery for spinal problems.

L:  Does seeing these images make you feel uncomfortable?

H: I think I’m now more at peace with it now, but I still don’t like them. It was a really horrible time for me.

L: It sounds traumatic.

H: My independence got taken away from me. And I couldn’t be active.  I couldn’t do any exercise for six months after my surgery because I had to keep my spine still. That was because they removed a rib during surgery. I didn’t even know they were going to do that until I woke up from surgery with a hole in my side.

L: You didn’t know they were going to remove one of your ribs?

H: They said they had told me but I didn’t know until I woke up and thought it felt very weird. They ground up the rib and mixed it with an adhesive and used it to fuse my vertebrae. I’ve got six fused together.

L: With the bone from your rib?

H: Yes.  The bone meshes with the other bone and has a better chance of fusing. They also put in metal pins to fix it. Then they put the bits of bone between the vertebrae so it fuses around the metal.

L: Does that restrict your movement?

H: Only in a limited way.  I’m glad I had the surgery, because I can now do most things other people can do. The only thing I find difficult is having a bath as I can’t lie at that angle. Also, because it’s between my shoulder blades, I find turning around behind me hard. Turning my neck means turning my body. But that’s a small sacrifice.  I think over the years both of the curves corrected themselves. The lower curve was exacerbated by trying to compensate for the top curve.

L: So they corrected the top of your spine and there was a corresponding improvement in the bottom? We can see an incredible amount of detail of your anatomy. Does it feel like I’m looking at something private?

H: Not really. I’ve been used to having people look at x-rays of my body since I was born. I don’t feel emotionally attached to pictures of my body. I am used to dealing with people’s reactions. But I’m also quite interested in seeing these images.  Not many people get too look at their body in so much detail as I have. I had get into lots of different positions for the x-rays so they could see how my body was moving.

L: On the x-ray machine?

H: No I stood up and they had plates behind me for the whole spine.  The boards were huge and sometimes I had to lie down on a big plate and move to see if there was an improvement.  Especially as the curve was developing. They wanted to study how it restricted my movement. They only operate if your curve hits a certain percentage or they think it’s going to get worse.

L: The x-rays are almost as big as you.

H: After the surgery I grew 2 inches immediately. When I got out of bed my vision felt taller, it was a weird experience.

L: What are these?

H: That’s from my back brace.  It has little metal fastenings. Before I left hospital they laid me down on this bed thing and made a huge cast for a brace. I had the brace for six months, except for when I was in bed.  This is from September, so it’s my first check up after surgery.

L: The x-rays act like a timeline of events.

H: That’s December: another check up. You can already see my spine is a little bit straighter.

L: So the pins go across your spine.

H: Yes they go in from the side and do it across, and the pins are only there until your bone fuses. In theory they could take them out but they don’t bother as it’s another surgery. I also found out I have an extra pair of ribs when I did this surgery; I have 13 ribs instead of 12.

L: So maybe it’s your body being clever and providing the material it needed to help your recovery.  It’s strange as we are used to x-rays having symmetry but here there seems to be a strong angle. Look at your shoulder.

H: That’s because I was lying down and I have one leg longer than the other and one shoulder higher than the other because my spine is curved and because of that my muscles grew differently.

L: When I look at you here now, I can’t see any of what you are describing.

H: You would have done if you saw me 10 years ago.

L: Did they show you these images as a way to discuss your progress?

H: Yes. Whenever we discussed my body there would be images. I remember after I had my surgery and I saw my x-ray for the first time with the pins in I cried. I was really upset because there were clearly still curves there.  I was expecting a major improvement straight away. In hindsight it was, but it took time for my muscles to adjust and grow.

L: Are you at all curious to see your spine now? In an x-ray?

H: I’m curious to see if it looks different but I have a feeling it probably looks the same as it did in 2009. There’s only so much it can correct.

L: It raises the question of the correspondence between the inside and the outside. To me seeing you on the outside, your spine looks straight.

H: If I go swimming in a bikini people don’t really notice my spine but they notice my scar. It’s really big, but it’s straight. It doesn’t really bother me now, but it did at the time. A lot of people have minor scoliosis because of how they carry themselves.  I still have my back brace somewhere. Part of me wanted to burn it as it was so horrific but in the end I kept it as a reminder.  Initially I couldn’t go anywhere without my brace but by September I was able to stand without it. I can see now it’s better in only 3 months. It’s a big change. No wonder it was so painful, my spine was literally moving.

L: Do you experience back pain now?

H: Sometimes.  I get pain here from where the vertebrae move by the socket. This bit is solid. I move those bits compensate for the fact I can’t move those bits. But before the surgery I had back pain every day. It was constant agony, but not now.

L: Can you remember how you felt immediately afterwards?

H: I remember waking up and being upset and feeling incredible pain. The most painful bit wasn’t my spine but the deep incision on my side where they removed the rib. I was in intensive care for two days.

L: Is that standard for this operation? To be in intensive care?

H: Yes so they can monitor you.

L: So that must have been a very difficult place to be for two weeks.

H: It was awful. It was probably scarier for my parents. I remember one of my friends came to see me, and she burst into tears and ran off. Some people after that couldn’t visit me because I looked so ill and were scared I would die. But they were only 16 so it must’ve been hard for them too. I think at the time I didn’t understand because I couldn’t see myself, I didn’t know how I looked.

L: That’s the thing these images don’t do, they don’t provide any kind of record of how ill or well you were.

H: According to the x-rays, I was well. The surgery went well and I had recovered very well.  The surgeon didn’t care about the pain as it wasn’t affecting the spine.  I remember getting frustrated with him, when discussing my pain levels. He’d tell me my spine had moved by this percent level and I thought that doesn’t mean anything to me. All I could tell you was it hurts when I do this.

L: You mentioned earlier the feeling that the whole thing was highly impersonal. There is a book called Fracture by Annie Oakley that is about exactly what you describe: the gap between the patient’s experience of pain and the clinical response. The two don’t meet in the middle so there’s little proper dialogue. I wonder whether I am trying to make up for that somehow in this process. Do you remember feeling vulnerable?

H: I’m sure at the time yes I was vulnerable and I was also annoyed. But as I’ve got older and I look back at myself, it doesn’t really feel like it’s me any more. I’ve tried to make it a more impersonal experience so I can shield myself from the trauma and the pain. It happened to me but I don’t talk about it with emotion. I’m trying to erase some of it.

L: I was bit worried about the process, inviting you to look at the images again.

H: It’s OK, it’s interesting looking at it again. I haven’t thought about it for quite a while. It’s making me remember the lack of control that I felt. My spine moving, my body moving, all these people adjusting me. I felt mentally and physically out of control.  And having to go to hospital all the time, to have people look at me, talk about me and have their students come in to look at me. . I don’t remember not going to hospital. They start to forget you’re a person.

L: You became a kind of case study or a medical curiosity?

H: I became used to it.  Whether it was my jaw, or that I had kidney problems, or my spine or that I was born early or I couldn’t walk upstairs til I was 5 because of my joint problems. I was always told from when I was as young as I can remember , ‘You’re different,’ ‘You’re medically different,’ ‘You look funny’, ‘Internally you are different’.  That made me feel different. It affects your psychology.

L: You describe it eloquently.

H: I’m used to talking about myself in a medical capacity.

L: And imaging is a central part of that?

H: When I was younger they’d talk to my parents rather than talk to me.  As I got older, less so.  They’d always be showing me images. I was aware of how much more I knew about my own anatomy than my friends who never went to hospital. They don’t know, because they don’t look at x-rays of themselves, whereas I do. ‘I’d think I’m different from anybody else in this classroom, and I wonder if you can tell it by looking at me externally’.

L:  I can see how you’ve become accustomed having yourself spoken about and I hope I’m not contributing to that!

H: No it’s fine, I don’t mind

L:  I am very interested in imaging within the experience of healthcare.  I think it can make patients feel exceptionally vulnerable.

H: I think it is a staged process that you go through. When I was first shown the images of my spine it  I felt quite horrible, seeing yourself blown up from the inside, but then I think the more they speak to you about it you develop an interest, the more you become able to speak about it to others.

L: I also wanted to come back to the picture of the pins.  I wondered what it was like knowing you have those pins inside you.

H:When I first had it done, because I was so skinny, I could feel the metal in my back because I didn’t have that much flesh.  I look at that x-ray now and it doesn’t feel like that’s inside me. The scar is the biggest reminder. I suppose I think more about that because that’s what people outwardly see. It looks quite brutal.

L: I’m aware that you’re looking more at your spine and I’m more focussed on the pins.