Last week I introduced you to Emily Harvey and Whitney Harris. This week, I continue my interview with them about growing up with congenital limb difference, their experience receiving prosthetic care from Shriners hospitals, and how they wound up in/around the world of prosthetics as adults.
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Dave: You both mentioned that you grew up going to Shriners hospitals. Most people don’t know a lot about them. How did you find your way to them and talk about your experience there.
Emily: My dad was military and my mom I’m sure is the one that found Shriners and started taking me there when we lived in Louisiana. Shriners was the reason I found out about the camp I went to for three summers.
It wasn’t like a place where you would go and see a bunch of other kids. You’d see them in the waiting room, but it wasn’t like it was an environment – like Walter Reed has the environment where everyone just kind of does therapy together and hangs out and talks and gets support through that natural environment. [Shriners] definitely didn’t have that.
But I loved Shriners because they took care of me. I didn’t really appreciate it, I don’t think fully, until I was an adult and was having a lot of issues with my leg and needed that team of doctors who were familiar with a congenital amputee. Every doctor I went to was like, “Wow, your leg was really interesting looking. I’ve never seen this before.” [Emily and Whitney laugh] And I’m like, “You’re not really very helpful.” I realized as an adult how fortunate I was to have a whole team – a physical therapist, a physician, a surgeon – who was so familiar with the congenital amputation and could provide that health care. It’s really hard to find that as an adult. So I love Shriners and I wish I could still go.
Whitney: So I came to Shriners because my great-uncle was a Shriner. [My mom] had taken me to someone in the private sector and they told her it was going to cost thousands of dollars, she wouldn’t be able to afford it, and, you know, it was like I was doomed. The closest Shriners was in Tampa and we lived in Pensacola, so it was about a 9-hour drive. I worked with the same guy all my life which I really appreciated because we could just go in, get it done and I could leave the next day so I’d only miss two days of school. But at the same time, he wasn’t open to new ideas because he knew what worked for me.
I loved the Tampa hospital. It had an amazing playground and the cafeteria was so good, so I thought it was always a real treat to go there at least every 6 months and play and do all of this fun stuff. It was more like this kind of fun place where I got to go and it was all about me and my siblings didn’t get to.
Emily: I just wanted to segue off of what Whitney said about the prosthetist who wasn’t open to trying new things. Mine was similar. I was wearing a pelite liner with socks, totally old school. When I started working with Walter Reed with all of these prosthetists, they saw my leg as a puzzle. They were like, “Why are you still wearing a pelite liner, that’s so old school. Let’s get you in a gel liner, this is the latest and greatest.” Did custom liners. And guess what socket suspension system I’m in now? Pelite liners with socks. So, you know, I was always wondering why my prosthetist didn’t want to try other things, but I ended up going back to old school anyway. As good as technology gets, I’m still old school.
Dave: You both grew up in coordinated health care systems. You had the doctor, the PT, the OT, and the prosthetist in the same building providing your treatment for the majority of your lives. Now you’re both in the private sector where care is much more fragmented. Do you see any particular strengths or weaknesses of either approach based upon your own personal experience?
Emily: I think it’s definitely good to have the lines of communication open between the people who are providing the care. I know when I was considering my revision [after I left Shriners], I didn’t count on [my providers] to talk to each other, so I’d just request my records and my x-rays. Then I had all the information and I would take it to the surgeon. I took it upon myself to coordinate.
Whitney: I’m 23 and the last time I saw Shriners was when I was 20, so I haven’t been in the private sector very long. Besides being in O&P school where they constantly tell you about the rehab team and you need to talk to all of these people, I don’t think it ever occurred to me as a patient. I don’t think I ever actually connected the dots. If my prosthetist ever did, I wasn’t aware of it. I know now where I work since we’re in the hospital setting and the surgeons are downstairs and physical therapy and occupational therapy upstairs, I think we almost have – not quite ideal – but as ideal as it could be in that our patients just stay in the same building.
Dave: You both could have done anything you wanted with your lives. Emily, you married a prosthetist and are considering careers attached to “disability.” Whitney, you’re a prosthetic resident. Why do you think you ended up there?
Whitney: My mother told me to, point blank. My mother [once] had to make a scrapbook of my future and that’s what she put, that I was going to be a prosthetist. I just thought, “This is great. I no longer have to be like other kids and worry about what I’m going to do when I grow up.” My mother just took care of that problem. [All laugh] I never really saw anything else as an option. I kind of wanted to be a teacher till my mom told me I couldn’t survive on a teacher’s salary with my prosthetic limbs. That’s how I ended up here. [Dave laughs.]
Emily: I’m much more scattered than that. I just showed up at college and I actually wanted to go either into physical therapy or athletic training. I was doing some hours at a physical therapy clinic and this prosthetist came in to see one of his patients and to talk to the physical therapist. And he was like, “Hey, you should come hang out in the shop with me,” and I worked it with my professor that I could do my internship hours at the prosthetic clinic.
And I was like, “This is cool, I’m good with tools and I’ve always liked building things and working with my hands,” so then I was like, “Maybe I should go to prosthetic school.” I actually applied to Georgia Tech and didn’t get in. My uncle was in the DC area and knew this Colonel who was looking for someone to work in Walter Reed and do stuff with prosthetics. I was like, “Well, that’s better than waiting tables at Red Lobster,” and started working at Walter Reed. Then I met [my husband, a prosthetist who worked there] and told him I didn’t date people I worked with … and that made him try harder.
It’s kind of like a force field. I didn’t have a mom telling me what I had to do, but it’s like the universe is telling me I have to be involved.