Chapter 02: Scoliosis Changes Life and Perspective

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Chapter 02: Scoliosis Changes Life and Perspective

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Ms. Sumler begins this chapter by noting that she initially aspired to be a dancer. She then narrates the progression of her scoliosis through the seventies and after her spine fusion surgery in 1976 and shares several stories of significant physical and psychological events. She talks about the grieving she had to do because of the blow scoliosis dealt to her identity as a dancer and describes her process of coming to accept her new physical state and identity.

Identifier

Sumler,PSS_01_20180501

Publication Date

5-1-2018

City

Houston, Texas

Topics Covered

The Interview Subject's Story - The Patient; Personal Background; Character, Values, Beliefs, Talents; Influences from People and Life Experiences; The Patient; Professional Path; Human Stories; Offering Care, Compassion, Help; Patients; Patients, Treatment, Survivors; Cancer and Disease; Formative Experiences

Creative Commons License

Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

Disciplines

History of Science, Technology, and Medicine | Oncology | Oral History

Transcript

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

Mm-hmm, yeah, visual arts. I was also a dancer. I started dancing when I was very little, and so I also danced. My aspirations were to be a dancer, so that was kind of my plan. My plan was really to be a priest, but that wasn’t going to happen, (laughs) and so I was going to be a dancer. And then I started practice... So then I developed scoliosis. So I had scoliosis, and I was having—it was kind of progressing rapidly in high school, and I was having difficulty in physical education, not being able to do certain things. I had a note from my doctor to get taken out of PE classes. And so I guess at that class period there was not another class I could have, and so they made me be an art assistant in a classroom that already had an art assistant, so it was really just like an art studio time for me. And so when I went into that class, the first day, one of the students who became a good friend of mine was making a batik, and it was the tree of life. And around the outside of it she had written, “May the long time sun shine upon you, all love surround you, and the pure light within you guide your way on.” And that was a song I had heard on the radio, and I said, “Oh, I love that song.” And she said, “Oh, this is a song we sing at the closing of every yoga class. You should come.” And so I was 15 years old, and so she was a couple years older than me. So we went to yoga class, and it was a kundalini yoga class. The musicians who recorded that song [The Incredible String Band]—had been students of this yoga master, who became my yoga master, and so he had heard this song and said, “We need to sing this as the closing song—[of] every class.”

Tacey A. Rosolowski, Ph.D.:

Can I just ask you a question? Tell me about your experience of being told you’ve got scoliosis, there were limitations on what you could do. I mean, what was your reaction to this progressive condition?

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

Wow. It was interesting because before I was diagnosed with scoliosis I knew that one side of my waist was flat and the other side curved in. I knew that I was structurally different, but as a young girl I just thought I’m not perfect. I guess it was a self-esteem, or just you’re trying to figure out—your body’s changing and all of that. And so I was just --there was something wrong with me, and my belly stuck out, and found out that was because of the curvature and the rotation of the spine later. My clothes didn’t fit right, but I didn’t really under—it didn’t—I wasn’t able to piece it all together. I was reading an article in the newspaper on a girl who had scoliosis, and she had to have this surgery, and be in a body cast for a year, and I just remember praying and just thanking God that I didn’t have that disease. I just thought that was the most horrible thing that I could possibly imagine. And then the next week my mom took me for a physical exam, because I was going to this big Girl Scout jamboree, and the doctor had me turn around during the exam, and he had me bend over, and he was drawing with a ballpoint pen between my vertebrae, and just tears started falling down. When I stood up and my mom saw me crying, she’s like, “What’s wrong?” And I just knew. So the doctor started talking to my mother about how he thought I had scoliosis, and I needed to go see a specialist. So at one point—my back wasn’t supposed to get worse. I did have pain. It did interfere with things. But then I was in an accident. I was thrown from a horse, and I got kicked in the head. I got stepped on my back, and both of my—I had fingers on both hands broken. And so it was after that accident that I started rapidly progressing in scoliosis. I lost three inches in height, and was actually having difficulty standing up or sitting or moving for positions. It started getting really drastic. And how that affected me—it was just really hard to digest, hard to comprehend what was happening.

Tacey A. Rosolowski, Ph.D.:

So how was it treated?

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

So I had surgery right after I graduated from high school, when I was 18.

Tacey A. Rosolowski, Ph.D.:

And this year?

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

That was in 1976, and that was September 14th, 1976. And it was here in Houston. I remember before I had surgery, when I would go just every year for my examination there, they would always show me off, because when you stand forward I could bend [sideways] all the way, my shoulder to my leg. I was so flexible. After surgery, I think it was just really shocking for me just to not be able to bend my back, just to not be able to bend.

Tacey A. Rosolowski, Ph.D.:

Did they put a pin—

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

Yeah, so they straightened the spine, and then I have a steel rod, so it’s about two thirds of my spine, and I have the steel rod, and the spine is fused with bone. So...

Tacey A. Rosolowski, Ph.D.:

That’s a huge shift in body awareness, your body experience, who am I as a body.

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

It really was quite an experience. I was in—at that time, they put you in a body cast. Now it’s different, but then it was plaster. It was heavy. Part of that weight was to help the fusion. You wear the—after about six months, then they’d change the cast, so it’s nine months in a cast, and then it was three months in a brace. For me, I think, I graduated from high school. My friends were all going to college, and then I went to hospital was the way I saw it, (laughs) and kind of was in bed a lot, and just recovering for a year. I just remember I had a profound experience when the doctor was putting my cast on. It was like when I was going to have surgery, I read about it, I learned about it, but I didn’t realize it was going to be painful. Then it was extremely painful after the surgery. I remember I had this experience where my mom was with me in my room, and I was in so much pain that I was out of my body. It was like I was on the ceiling looking down at my body, and I just thought, there’s no way I’m getting near that. It was just so painful. And then I remember thinking, well, if I’m up here on the ceiling, maybe I could go down the hallway. And so then I had this experience of going down the hallway, and I saw somebody carrying flowers, and I just knew they were bringing this arrangement of flowers to me. And when I saw the flowers, I knew they were from my aunt, my mom’s youngest sister. And I had been my mom’s youngest sister’s flower girl when I was little, and she was like my other mother. And I just knew that they were from—and I said out loud, “Oh, Paula has sent me the most beautiful flowers.” And then there was a knock at the door, and the door opened, and they brought in these flowers and put ’em down. And my mom looked at them, and she saw the card, and they were from my aunt Paula, and my mom said, “How did you know?” And I remember thinking, oh, I can’t tell her [that] I just knew [as soon as I saw them]. I kind of totally forgot the whole thing that I was having this out-of-body experience. And I said, [I read the card.”]

Tacey A. Rosolowski, Ph.D.:

When really it was dad and the stoplights that was helping out there. (laughter)

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

You know, it was just like, whatever.

Tacey A. Rosolowski, Ph.D.:

Yeah. That’s an amazing experience.

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

I remember years later I saw—it was some British TV show in the hospital where somebody had kind of a similar type experience, and I thought, okay, maybe that really did happen, you know?

Tacey A. Rosolowski, Ph.D.:

Yeah, yeah, clearly. I mean, how did that experience—did it have an effect on you, having that kind of out-of-body experience around pain and...?

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

I think, well, it had—I mean, it definitely had an effect on me now as—in the work that I do. That hospital experience, it definitely... One thing I realized is that people have a lot of experiences that they don’t talk about, or they don’t feel like they can talk about, because people will just kind of shake their head at you, or there’s not something to reflect in society all these different experiences that we have. I think --another kind of experience that I had in the hospital—I had several different experiences in the hospital that were profound. I had an experience of—from the medication I was on, when they were changing my pain medication, of hallucinating for 24 hours, and it was really frightening. What I do remember, I was down the street by the Mecom Fountain, and I realized I could just hitchhike, because I thought that they were trying to kill me in the hospital, and that’s why I was there, and it was all my mother’s plan to get rid of me. And so I was down by Mecom Fountain. I was going to hitchhike and go away. And so then at some point I called my mother up and I told her, “I know what you’re doing. I know what you’re trying to do, and I just want you to know it’s not going to work. I’ve already left the hospital and I can get out of here.” And my poor mom, it was the one night that the nurses had told her, “You have to go home and go to sleep,” (laughs) and so it was the one night she wasn’t there. But in my work I’ve experienced a lot of patients who’ve had similar kind of frightening experiences with hallucinating from medications and things, and so I think that has given me some compassion, to be able to have that empathy, or a glimpse into somebody else’s experience.

Tacey A. Rosolowski, Ph.D.:

Mm-hmm. And I think you’re right; I mean, I know from interviewing people have a lot of experiences that they—it takes them a long time to kind of warm up and realize that there is someone who will listen to it, because a lot of people say, “No, that’s weird,” or “You should go get medication to make that stop,” (laughs) or... And I think there’s a lack of recognition of the full range of what human experience can be—

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

Yeah.

Tacey A. Rosolowski, Ph.D.:

—and needs... I enjoy acknowledging that. It’s much more faceted than traditional folks might want to think.

Pamela Austin Sat Siri Sumler, LMT, BCTMB, CLT, E-RYT:

I agree with you, and I think—another experience I had that really was probably my most profound experience during that period of time was when, after my surgery—I don’t know how much—what time it was, but at some point when they were going to put the cast on me, and I had to be moved from, like, a gurney into wherever it was where the doctor was going to put the cast on me, and I was in so much pain, and I just told him, “I can’t do this. I just—I can’t move. I can’t do this.” And somehow—I don’t know how he did it, but he just, like, looked me in the eyes and he just said, “You have the strength to do this.” And then it was just like he was just connecting with me, and then somehow we were able just to go through this process of him applying this cast. And I just remember in that moment thinking, wow, the human connection is so powerful, that I just had—I valued that.  "

Chapter 02: Scoliosis Changes Life and Perspective

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