Several months ago I had a conversation with Dr. Robert Spetzler, the Director of the Barrow Neurological Institute. During our interview Dr. Spetzler mentioned that the patient needs to become captain of their own ship. I agree. Although most of us (as patients) would like someone to step in and care for us when we’re sick, rising costs and limited providers make it impossible for the healthcare industry to meet America’s expectations for care. Healthcare needs patient partners.
But in all fairness, I thought to ask a patient what they need. So, with the start of 2017, I thought to ask turned to someone who deals with her care everyday, my mother.
Sheila Pitt is an Art Professor at the University of Arizona. In 2008 my mom suffered a fall from a horse and became a quadriplegic. Since then she has gone back to work teaching and continues to make art with a new process she developed using the abilities left to her. In the past I wrote about my perspectives on her accident. I thought I’d discuss my mother’s journey in healthcare.
Alan: So, Mom, can you tell me when you first realized you were quadriplegic?
Sheila: Yes, I can. I was in my hospital bed having just returned from the surgical floor when one of the nurses referred to me as a quad. And—not to me but to someone else—they said, get this quad ready for whatever the procedure was. I was shocked. I had no idea I was a quad. No one had talked to me about it. No one had explained what that was about. And it was like I wasn’t there. They were talking about me as a quad and I was really quite shocked that they did that. But I realized I must have been a quad.
Alan: That really must have been a transition. Of course I’m a radiologist, so I see the images, but a lot of times, particularly with acute events, you forget about the downstream effects for the patient and their family with this tremendous transition. You know, I’m a senior physician here at the hospital, and I had a fair amount of control over your stay, particularly during the acute stages. I remember you moving from the ICU to the floor to rehab. Can you tell me your thoughts as you transitioned to these places within the hospital?
Sheila: Basically I was thinking—as I’m sure all quads think—I just wanted to get my life back. And I didn’t feel like people understood that’s what I wanted. They listened to me, but they didn’t quite understand. As an example, I wanted to make art again. When I raised this topic to the people caring for me, they didn’t seem to understand what I meant. They offered me a pencil in my mouth to draw. But of course I wouldn’t do that because I’m a professional, and I wanted to be able to draw with my hands. At that time, they didn’t even offer me dragons and voice-activated service, and they didn’t really try to explore other ways for me to draw. So that’s something I had to learn myself or find a way myself. Of course I wanted them to help me but they really didn’t have a clue at all or seem to understand what I wanted.
Alan: There have been a lot of moves in healthcare to support the social aspects of folks as well as the medical aspects. We do a great job of putting people back together again, but things that really matter in life may be a little bit out of our control. You were air-evacked to Phoenix for your care—at the time of your accident they had very little neurosurgical coverage in Tucson, though that’s been rectified. What was it like when you moved back from Phoenix to Tucson?
Sheila: It was pretty scary. The first step was to go to a nursing home in Tucson, to handle a quad like me and have my insurance pay for it. The insurance only allowed me to go to one place that was willing to accept me. And the only room available in that place was next to a woman who was basically brain dead for the last ten years. It was very discouraging to be there. In fact, I was the only person that had real health insurance that paid the way. Everyone else in the facility was on AHCCCS. The good thing about this place was that I met a very caring physical therapy assistant, Bill Yslas. He was very helpful when I moved back home. I was of course terrified at home; I didn’t know how it was all going to work. Without Bill, I wouldn’t have been able to make it. He came to the house as I was transferred from the facility. He checked everything out and made sure everything was okay. And then he kept coming back every day until I felt relaxed about what was happening. He got me through the system. In fact, he went with me for my first few urology appointments. And he helped with all my choices. I feel he was—is—watching over me still. Without Bill I think I would have been left in bed, get bedsores, be depressed and be dead by now. But Bill watched over me and pushed me to try to walk again, which we can do with a brace, to get me back to work and to live. In fact, he tells me now if I didn’t work the first day I was scheduled to work, he was going to quit and never see me again because he thought that was so important. But of course I did go back to work and I’m still working now. It’s been 8 years since I went back to work and it’s been wonderful.
Alan: That’s awesome. I have gotten a chance to meet and get to know Bill. He’s kind of outside the system, right? He’s not somebody who insurance found for you or any of your doctors in Tucson. I feel fortunate as you do that Bill came in and was able to help you. I can imagine having somebody there—a guide—to navigate you through the healthcare system is super important. It’s ironic that he’s outside of the healthcare system.
Sheila: Yes, it is ironic.
Alan: Let’s talk a little bit about family. A few years ago I asked you why you never seemed to call me much. I’m a doctor, and it seems that most folks, as they get older, tend to call their sons or daughters who are doctors but not you. What is it? You don’t really respect my opinion? (Laughter) Why is it that you don’t call very often?
Sheila: Well, I call you but we don’t discuss my condition. And you call me, of course. It’s not that I don’t respect you; in fact I respect you very much. I think that you’re an excellent physician and have excellent ideas about medical health and things in general. But I really wanted you to be my son, not my doctor. I certainly use you as a resource when I have a serious question and I don’t feel good about the answers I’m getting, but I didn’t think it would be healthy for you to act as my doctor on a day-to-day basis. I felt that would put you in a bad position, and I just didn’t think that was right to do. Of course I would have liked to have you move in and take care of me; that would have been great. But that of course wasn’t something we were going to do. I wanted some level of independence, and having my own methods without involving you on a day-to-day basis was important.
Alan: This is something I’ve seen a lot, where the loved one cares and wants to be involved but the person with the health issue wants to be separate as much as possible. I understand that. How do you view your life now? You’re a quad and you go about things?
Sheila: It’s interesting. I view myself as normal, but I can’t walk and I can’t use my arms and hands—or minimally use my arms and hands. But I’m very optimistic about my life. I feel positive. I have wonderful support from my family and friends. And I’m normal, except I can’t walk.
Alan: How do you see it when you’re out in public? How do people view you in the world?
Sheila: This is fascinating. There are two groups of people. One group moves away because they’re uncomfortable. Another group gives me that look and smile and hello, and kind of little bit of pity in their face. So they’re both kind of awkward. At work everybody’s adjusted to me. Of course, I work with young people, with college-age students. And they’re wonderful. They really don’t care. They just want to get in my brain and know what I’m thinking. And one of the wonderful things is at the beginning of every semester, with a new group of kids, I always tell them that I don’t have a loud voice, so if I say “Attention, I have to talk to you,” they have to pay attention. Man, I never get that behavior now. They pay good attention. It’s been a plus that they’re so responsive to me. And also I let them ask me any questions they want, about being a quad or whatever. One or two of them ask me, but most of them don’t really care. They just want the information that I give them. That’s what I want.
Alan: Do you have any thoughts for people who recently may have become quadriplegic?
Sheila: It’s very important to have family around you or people that love you. I’ve found that love really makes me feel responsible to get better. I think it’s important that the family of quadriplegics don’t pity the quadriplegic because it’s easy to feel discouraged. The family should definitely encourage people to go back to work or find some way to re-engage with the world. It’s very important to do that. Of course, I’m older and established, so I can say that easily. But for young people, they have a lifetime ahead of them being a quad, and it’s very important for their family to help them re-establish in the world and not be too dependent on them.
Alan: I remember my aunt—a good friend of yours—who has multiple sclerosis. You had told me a story she told you when you became a quad that you can’t talk about your illness too much because people can’t stay with you on your journey. I feel it sometimes isolates you, but at the end of the day maybe it helps you and the family move forward, to have as full a life as possible, whatever challenges are in front of you. I personally agree with Dr. Spetzler’s comments that the patient has to be the captain of their own ship. I struggle sometimes that we, as healthcare providers, really haven’t stepped up to help patients play that role. Given your journey in the last almost a decade, do you have any closing thoughts?
Sheila: I do. I think that the idea of captaining your own ship is perfect. I think it’s very important for quads to advocate for themselves. They have to take charge of themselves and what their needs are—and do it by themselves. I call the insurance companies; I hire the caregivers; I check their references; I make food lists for shopping; I pay all the bills through banking online. So I do I a lot of things that help me to be in charge of myself. It’s very important to be as independent as possible and get back to living in the world. So, I think being the captain of my own ship is so important that I can’t express how that’s really changed my life. I used to be an advocate for other people in teaching. Now I find that I’m my own advocate, and I’m pretty good at it. I have to be. And I like it, too. It makes me feel good about myself.
Alan: I guess you’d almost tell healthcare providers, if you can’t cure me, at least get me back to living. Let’s focus on that.
Alan: Well Mom, I want to thank you for your time. I love you, of course. More than that, I respect you. I think you’ve done more than anyone could have imagined after your accident.
Sheila: Well there didn’t seem to be any choices other than this: to get back to living as much as possible.
Alan: Thank you very much.
Sheila: Thank you, Alan. I love you my son.