What I couldn't capture or convey in words was the pleasure that these girls had in sharing there stories. The interview was a delightful mix of laughter and excitement, with some surprisingly mature statements from both girls. It was a long session, so I will divide it up in several posts.
Please note that their mother, who was present for the entire session gave full permission for use of the text and the picture.
I hope you enjoy.
Grace and Emma
KPM –So I thought it would be helpful for people to know what kinds of things go through your minds about scoliosis. I think it’s a topic that Docs don’t seem to talk about much.
Grace – I guess when I first found out about scoliosis I was nine, so I didn’t really think anything of it. I think we found out during a physical. But at first I didn’t really know or really care what was going to happen. I knew I wasn’t going to die. I wasn’t told I was going to have surgery. [The doctor visit] was a thing that I had to go to; I had to get x-rays and everything. After I moved here I sort of became more aware of what was happening, like I anticipated that I had to have surgery, so it wasn’t a complete shock to me. I wasn’t scared, but it was kind of nerve-racking at first.
I did not want to go to Backtalk [spine support group] or the Spine Camp. I didn’t want to be in one of those circles where you talk about your feelings and stuff. But after my mom said she was going to go and everyone else was going to go, then I guessed I had to go.
I didn’t want to share. Nobody knew at school. I didn’t want to make it into a big thing.
I found it as like a limitation. I didn’t want to be different from everyone else. I didn’t want to tell everyone I couldn’t do this or this because of my scoliosis. I thought it was a case where I wouldn’t be able to do something and that was why I didn’t want to tell everybody.
Mother – And you were afraid that you were going to cry. This is a very extroverted kid that was able to sing on the steps of a cathedral, but she didn’t want to talk about something with kids who had the same thing. It was shocking. You did want anyone to see you cry, was your quote. I remember when you were doing everything at home - everything was very isolated, the crying whenever you wore the brace. Like you were the only kid [who had the problem].
G – In a sense I was in my mind.
Nobody really understood the emotions I was going through. I mean they got it but they couldn’t really understand. And so it was kind of alone feeling.
K – Did you know anybody with scoliosis?
G – I didn’t know if I knew anybody. People would tell me, like “I have scoliosis, but it’s only a 20 degree curve” so I was like, OK, why does that matter. It wasn’t really significant to me. I knew that they were trying to reach out to me, but I didn’t think they could understand what was happening to me.
K – Did you let the scoliosis define you? Were you “a girl with scoliosis?”
G – Yeah, in a sense I was, I thought of myself that way. I didn’t tell anyone at first that I had scoliosis. I thought it was a limitation that I was determined not to let it make me who I am. But in my mind it was. It was like I couldn’t do this and I couldn’t so that. It was almost like I was in the wheelchair of my mind.
K –What kind of limitations did you think you had?
G – Well, I was in dance and I felt I couldn’t do the some of the modern dance and even in ballet there were things that were hard. We’d have to square our shoulders and I couldn’t do that and I felt that I couldn’t say “I can’t do that because I have scoliosis.” I didn’t want that to… but that’s sort of what it became in my mind of what I could and couldn’t do.
M – And then one particular day changed all that. Do you remember what day it was? I do.
G – Was it the Spine Camp? (Mother nods) Yeah – I went to Spine Camp and it was where they have all the different activities and all these teaching stations. Seeing everybody there was overwhelming, especially Mara [BackTalk founder Mara Howard-Williams].
K – I remember you at that Spine Camp. You wouldn’t say a word – you just stood there glowering.
M – She was so mad at you she would barely even talk to you. She said he can’t make me go, but we really wanted her to go since we knew it would help so much. But by the end of it, and after Mara spent some time with her, it was like looking at someone who was in a type of recovery. She found someone who had the same story, the same path – it was shocking. Sad though I was about not being able to reach her, I felt that the Spine Camp people were such a gift. You know, like a village raising a person. –
Even that night, the bracing was so much easier. It was remarkable. Because she had someone else who had gone through that experience. And she never went back to the isolated whining.
K – Did you share things with Emma (your sister) when you found out how bad your curve was? Did you try to talk with her about it?
G – Nah.
M – Emma would help her take the brace on and off.
G – Yeah, Emma was always there, like at the appointments and things. But it wasn’t like I needed to share new info with her – she just sort of knew everything that was happening.
Emma is a significantly better dancer than I am, so it was kind of overwhelming to see her succeed where I couldn’t when she’s younger – so I didn’t really want to talk with her about it. I felt I could talk to Mara and to a friend of mine – she had had spine surgery already.
M – They were in the same class. They didn’t even know they had the same issues.
K – You did know someone – you just didn’t know it.
You knew about your sister’s diagnosis, Emma, and you knew she was probably going to need surgery. What did you think of it all?
Emma – Well, when she had surgery and was in the hospital, sometimes I had to sleep over at my friend’s house. And I knew that surgery was serious – like when she was in the operating room. I would do a lot of stuff for her when she was recovering in the hospital and at home. I would go up and downstairs and fetch stuff.
G – I think after the surgery, there were certain people that I didn’t want there and Emma was one of them at first. I know that sounds bad, but every time she came to the hospital I was like “Emma, get out!” But in the end I was very grateful that she was there.
M – You were hurting. I think you wanted her gone because you didn’t want her to see you hurting.
K – Emma’s so cheerful. Maybe you just couldn’t deal with cheerful at that time.
M – Now Emma is relieved because every time we come her spine is still straight.
K – I’m sorry. I don’t remember the exact timing. Did we find Emma’s scoliosis before Grace’s surgery?
E – Yeah, we got the ScoliScore (gene test for scoliosis) on the day of her surgery. You let me know then and that we would talk later.
K – So Emma, when you found out about the diagnosis, were you afraid that you were going to need surgery? Are you still afraid you’re going to need surgery?
E – I’m afraid that if I did, I would have the same trouble with dance that Grace has and that’s kind of what I want to do with my life. I want to be able to do certain things that I might not be able to do with back surgery.
K – But Grace, you are performing now, aren’t you? Theater- type dance? (Grace nods) Are there limitations that weren’t there before surgery?
G – Before I could do somersaults, bending back. But before my balance was kind of off – it’s still off but it’s better. My limitations were a lot different because I couldn’t bend my back. It was a lot to adjust to.
M – What about your stamina? Your ability to hang in there? Is it better after or before surgery in terms of pain when things ache?
G – I don’t remember a lot of pain before surgery.
M – I love that that’s true for her.
G – Definitely more pain afterwards for a while.
M – You had to build your stamina up right after surgery. Before the surgery, your hips would hurt you so much and also your shoulders. Now that you’re fully recovered from surgery – your stamina is so much greater now. And I would say that now you’re pain free. You went through a couple of years… I’d say this is the first season you’re not having medicine every day – but before surgery, the aching would cause her to poop out and also she would get out of breath.
G – I remember that.
M – Now that you’re straight your lungs are working perfectly. I notice as a mom that she can go for longer in physical activity than she could before. Now the back muscles don’t ache as much. She doesn’t even feel it is necessary to tell her director that she has rods in her back.
K – So Emma, do think about your scoliosis at all? When you are dancing?
E – Yeah, I think about it. I always think about it when I’m dancing. But when I’m dancing, nothing really hurts. It’s afterwards, and I think that’s really weird.
K – Is your appearance an issue as a dancer? I mean no one is as aware of their own appearance as a dancer. Do you look in the mirror – does that factor into the way you think of yourself at all?
E – I don’t see a curve because it’s very little… very small.
G – I don’t think she sees a curve at all. It’s the last thing on her mind.
M – We have a ballet barre and wall of mirrors in our dining room where they do their thing. Emma is always inspecting her body. I’m always wondering if she is looking at her back.
E – I don’t see it very much.
M – Emma used to look at Grace who was visibly crooked and so I think it disappeared from her consciousness. And she’s been told by numerous people that they doubt she’ll express a curve and I think she believes that.
K – Grace, has your appearance been an issue to you, both before and after surgery?
G – Yeah, well I wasn’t taking vigorous ballet classes so I wasn’t so self-conscious about how I looked in a mirror. Since I wasn’t in a class like Emma is. I was self- conscious after about what everyone would think of my scar. Going to the pool, like that. But I think the scar now has pretty much faded away and nobody notices it.
K – So that’s something that I have no grasp of – the idea of what you see and how much the appearance affects you.G – Yeah, I felt that after the surgery there was always the sense that when you stand up there’s a feeling of heaviness. And what’s going to stay and what will go. How you’ll feel in six months from now or even tomorrow. What’s going to happen because you don’t have someone who’s parallel to you. So in the beginning you look in the mirror and ask, is it always going to look this way or does anyone really even know? Because the scar is kind of … it is the biggest scar I’ve had. So yeah, you don’t really know how your body’s going to take scars so you don’t know what it’s going to look like 2 or 3 years or if it’s going to be significant or if you’re going to be like that girl who had to have the rods taken out – multiple surgeries. There was always that mystery factor of what feelings were going to stay and what feelings were going to go, thinking of your appearance and what was going to remain. It was kind of scary at first… but I’ve gotten over it now.