The last few posts have been about the process we went through and the steps that we were taking to figure out how to transform the notion of transition through the healthcare system at different points throughout the life cycle of a person living with a chronic illness. We had some amazing moments that gave us the ability to see the world the way we hadn't been seeing it previously, and I think we have the framework for a plan to take that work forward. But this post is going to be a little different. I'm going to start with today and work backward to see if I can figure out what changed inside of me and what it means for me going forward.
This weekend my kids had to go to the doctor for a flu mist. I scheduled these appointments in September and the earliest that our pediatrician could get them in was yesterday. They called on Friday evening to confirm that they would be flu mists, and the kids anxiously asked, again and again, if they would be getting a shot at the doctor on Saturday morning or the nose spray. We reassured them that they would be receiving the mist. So when the time came on Saturday morning, my husband loaded up three willing kids (Drew had his shot at the pulmonologist in early October) and away they went. They returned a little different. When they arrived at the pediatrician's office, they were informed, not at check in but in the exam room, that they had run out of flu mist so they would be receiving the shot. The kids felt tricked, lied to, hurt. All of them in tears, one tried to take off and the others had to be restrained by several nurses and my husband for a quick and simple stick in the leg. And i'm not even really that mad that they had to get the shot. I'm mad that their trust in their parents, their little 3 and 5 and 7yr old trust in their healthcare providers was broken. I'm mad because we've experienced this shitty healthcare system in this way enough times that I know the implications of that simple and innocent change down the road. Next time they have to go to the doctor, it will be hard to get them to go. The ripples of this interaction with healthcare will not dissipate quickly. As an adult, I'm able to recall interactions I've had with the healthcare system that have had an impact on the ways that I behave and interact with healthcare providers today - not being totally forthcoming with information on how adherent I've been with a certain medication, for example, or not seeing my primary care doctor as often as I perhaps should. It's because it doesn't feel good to do that.
Before the great flu shot fiasco of 2015, we tried to get Drew to take 3.5ml (thats about half a teaspoon) of a new medication that we are starting to treat a fungus that he has in his lungs. And he broke. We had pushed him too far. We were asking too much. But 3.5ml? Is that really what broke him? I had to reflect on why 3.5ml of a mediation that sort of tastes like oranges was the limit. And as I added up all that we asked this kid to do in a day, combined with a little disappointment he was feeling about a playdate he was excited about falling through, I realized something. A quote from "Being Mortal" struck me in this moment: “The terror of sickness and old age is not merely the terror of the losses one is forced to endure, but also the terror of isolation. As people become aware of the finitude of their life, they do not ask for much; they do not seek more riches; they do not seek more power; they only ask to be permitted, in as much as possible, to keep shaping the story of their life in the world. To make choices and sustain connections to others according to their own priorities. Society has dictated that debility and dependence rule out such autonomy, but it’s still very much possible to attain that.”
This poor kid just wants some control over his life. The way that we have shaped our lives around this disease was according to the priorities of our family, not of Drew specifically. And quite frankly, having never lived with a chronic illness prior to Drew joining our family, we are making up our future out of our very imagination. We don't know what you're suppose to do and how you're suppose to act. I digress. While we need to realize that there is some control that he must relinquish due to the simple nature of cystic fibrosis, we cannot simply keep asking him to do more. We need to appreciate what he has and does and how this fits into the context of the rest of his life. He's being taught at school right now about all of the food and all of the life choices that are bad for your health - watching too much tv, eating too much junk food - important lessons, no doubt. But upon some self reflection, we have to appreciate how that might make him feel, hearing the message that what we've been asking him to do is wrong, and even more how him doing it in front of his peers - eating chips for lunch everyday, drinking gatorade, watching hours of tv as he sits doing breathing treatments - how he might feel. I can only imagine his 5yr old mind struggling to rectify this - how does it make him feel? who does he trust? He needs to be permitted, in as much as possible, to keep shaping the story on his life in the world. To make choices and sustain connections to others according to his own priorities. We recognized this and are going to be talking to his healthcare team about what we can change.
Then I started to think about this in my own life. Feeling judged or even criticized at times for all that I do or don't do, how I choose to share my perspective and experiences, I realized that as the caregiver, I too was feeling the need to keep shaping the story of my life in the world, as that autonomy is something that chronic illness tries to take from you. I think we can separate it from healthcare even, saying that we all desire that autonomy in our lives. Turning into an advocate and a designer is my way of retaining that autonomy, designing for us the life that we need out of nothing more than my imagination.
In my first post on Flip the Clinic, I had shared about being asked at the summit what we (individually) need to let go of in order for your team to make a breakthrough" and my response being "The fear that if I stop running (metaphorically) my son will die." On the plane on the way home, I realized that I had actually accepted that long ago. That wasn't what I was holding onto that was preventing our team from making a breakthrough. With the speed (or lack there of) at which change occurs in healthcare, I've accepted that much of what I'm doing in trying to change healthcare likely won't help Drew, and that's okay because Drew is alright. I'm able to do what I need to to help him. I was running for a different reason, for acceptance and understand of the way that I think, for who I am.
I had shared with a different stranger at the summit how hard and uncomfortable and exhausting the work that I do can feel. And her response was that I was being courageous, and that my work is critical. So on the way home I googled courage.
Courage (also called bravery and bravado) is the choice and willingness to confront agony, pain, danger, uncertainty or intimidation.Physical courage is courage in the face of physical pain, hardship, death or threat of death, while moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss.
Channeling my inner Brene Brown, I could finally declare that courage is a value that I hold. It is a choice that I make to show up and be seen, and I do so knowing that the only guarantee is that I will likely get my ass kicked. This is who I want to be.
As if I hadn't received enough soul-filling inspiration from this summit, someone shared this with me, the recommendation to watch this TED talk - https://www.youtube.com/watch?v=TaX5DUGC1CU. It's about how we, as a society, as people wanting to help, are trained to look at the problems - the lacks, gaps, needs, wants - the broken stuff. She suggests that perhaps instead of looking at all that people don't have, we should start to look at what they do. I can give you the example of our doctor's appointment this morning. When we sat down in the office the nurse said, "So we have Andrew here, a 5yr old male with a history of cystic fibrosis, tracheomalacia, pancreatic insufficiency, more bronchoscopy's than I can count, chronic sinusitis, a bowel resection, ileostomy, and airway abnormalities. His medication list is 2 miles long but I've gotta go through it so here we go." My response was, "He's got a lot of really great qualities and successes in his life, too." She chuckled and we moved on. What if Angela Blanchard is exactly right and we can't build on broken. What if the answer lies in our ability as a team - patient and provider - to share what we have, and build what we can to find what we need. What if we can't see the solution by just looking at the problem. It is about partnership, but a different kind. A partnership focused on what we each have rather than what we each need.
If I was asked about my priority at our visit today, my answer would have been, "To get to school before 11am so that he doesn't miss his favorite part of the day." I'm here for a sinus polyp consult, but my actual priority is to get this disease to a place that doesn't interfere with school, because that's his favorite thing right now and I think that finding a way to include his priorities into the story of his life is importat. Channeling more from Angela, we've all been in situations, as humans, raw and painful and excruciating moments, and it's hard in those moments to think about asking people what they have, talking about their strengths, what they're good at. But much like so many of us feel compelled to help, these people, the patients/caregivers, we want to contribute too. Our stories matter. We want to tell you what we can do and what we do know and that's the first step on my path to a new story. This gives us hope, meaning, a sense of belonging. Think about how that might contribute to successful transitions, adherence, sustainability, success. We all have the capacity to imagine a future different from the life we live. The job of those who want to help us is stand beside us - not in front of us, but beside us. When chronic illness shows up in our lives and takes away some of our freedom, we truly are left trying to create a life out of only our imagination. It's a little bit like stone soup - if we all give what we can, we all have a little more, not a little less.
So what does this all mean to our work and the project we were focused on at Flip the Clinic? Well, we discovered that perhaps instead of trying to change the system, we needed to change ourselves and the way we interact with it. Rather than focusing on transition as a point in time and trying to identify which transitions throughout the life cycle of a person with a chronic illness have the greatest impact on the other aspects of life and health, we shifted our focus to the core components of a transition point, any transition point, and the parts that we want to take to 100 and the parts that we want to take to 0 - what do we need to start doing and what do we need to stop doing in order to achieve transformation. In our 100 column we thought about things like partnership, preparedness, empowerment, shares goals and ideal communication. In our 0 column we put things like wasted time, feelings of abandonment, falling through the cracks, preventable illness and "the yuck", defined as anxiety, helplessness, hopelessness. We are living with a reality that will not go away, at least not in our lifetime, but we know that things could be better. So we moved from these temporal transitions into the realization that every interaction is a transition and we need to change the way that we interact with one another. As a team we haven't yet come up with a physical prototype, but we did set goals for ourselves. In a year, we hope to have active experimentation and a way to capture our learning, leading to pattern emergence to identify new and better ways of interacting with one another (patients and clinicians) on a personal level to achieve better health outcomes. We changed our team name from Lost in Transition to Navigating Transition Together. We have plans to connect with one another soon to map out a path to move forward. We've also nominated one of our team members, a med student with the most beautiful soul you've ever seen, to help write our narrative, organize our learning in the form of a story and help us to share it with the world. I'm really excited to see what we can do!
I took so much more from Flip the Clinic than I had expected to. It went so far beyond the work on our actual transition flip. Some of it can't be shared, not because it's private but it was personal, and it wouldn't mean the same thing to you that it meant to me. Words truly cannot express my gratitude for this gift that was given to me through Flip the Clinic. It was transformative for me to have so many breakthrough moments, to have a better understanding of who I am and what I want and am trying to do in the world. I came home feeling like 1000 bricks had been lifted off my shoulders, with a clear eyes and a full heart for my purpose and passion, and I'm going forward 100mph, only now, in the right direction.