AN INTERVIEW WITH ABBY JARMAN
H: Tell me a little about yourself.
A: Well, I’m a Third Culture Kid and a proud Oregonian. I’m a pragmatic idealist with a dark and absurd sense of humor. I’ve been a type A, intense, socially anxious over-thinker since the womb. I love poppies, names, music (David Bowie is a favorite), puzzles, children’s books, Survivor, and British panel shows. And I’m always up for an interesting factoid—did you know that Oscar Wilde would tear off and eat a corner of each page he read?
H: What point are you at in the recovery process?
A: I’m at the very beginning. About a month post brain surgery. On July 29, 2020, I had an operation in which they removed a small part of my brain to correct a cerebellar herniation that was compressing my brain stem and spinal cord and obstructing my CSF flow. It’s likely not a cure, but we are hopeful it will alleviate some of my neurological symptoms. My brain is still swelling. My symptoms vary from day to day. I am cautiously optimistic, though. I have had glimpses of increased energy and lessened brain fog. However, I've been sick for 7 years and am quite thoroughly deconditioned, so the recovery process is going to be a long one. I don’t know if I can make a full recovery, but I am hopeful I can make improvements.
H: Why are you starting Headstrong?
A: You and I wanted to do this after the success of our SameYou fundraiser to continue the work of raising awareness and decreasing the shame and stigma around brain injury. I also wanted to provide a space for those of us who have gone through these experiences to share their stories, to close the distance between “us” and “them”, and to give everyone a chance to read these stories to foster empathy and understanding.
H: What do you think makes neurological issues different than other health problems?
A: 1) Your brain is where your sense of self lives.
2) It affects every system in your body, it's the control center. When one thing goes wrong, ten things downstream can go wrong. For instance, with POTS, if you go to most cardiologists, they’ll say they can’t help you because there isn’t anything structurally wrong with your heart, the issue is the communication between the brain and heart. So how do you tell your brain to start sending the right messages to your heart?? It makes it complicated to address symptoms.
3) Many of the symptoms of neurological conditions make non-sufferers especially uncomfortable.
H: So for you, with the gold standard being resumption of your old life, what are your expectations for your recovery and what kind of timetable are you giving yourself?
A: I’m giving myself a year and half to two years. That might change. I’m at the beginning and I don’t know how this will go. I don’t see myself returning to my former self, but my goal is to be able to give back to the chronically ill and disabled community as a therapist. I also want to make a difference in my personal community—my friends and family that have been there for me.
H: How did your age effect your experiences?
A: I became ill when I was 17 which was, um, challenging timing because almost none of my peers had gone through that type of all-encompassing suffering, the kind where no part of your life is untouched by it. My mom and I refer to it as living behind the plexiglass. You know how in TV prison they have those booths with the glass between the prisoner and the visitor and the little phones on each side? Once you’ve experienced a Hard Thing, communicating about your life with someone on the other side of the glass—the “free to go” side—can feel about as impossible as explaining color to someone who only sees in black and white. Needless to say, the experience was extremely isolating. I was watching all my friends go through freshers week on social media, date, go on travel study, find jobs—moving forward when I felt frozen where I was. When they would ask what was going on with me, what could I say? It felt very much like suspended animation.
H: How did this effect your identity/sense of self in the short term and long term?
A: It’s complicated. For the past seven years, I have been constantly grieving for who I was, but, most of all, who I could have been if I were healthy—cycling through the stages of grief nonstop. I try to linger in acceptance as long as I can, but sometimes denial was the only way to survive. When I became ill, my identity and life transformed into something I struggled to recognize. Old relationships didn’t make it. My vision of the future fogged up. How I interacted with the world. How the world saw me. It all changed. Society now saw me as Sick Abby—and I really struggled to not see myself in that way too. Sometimes it felt like the worst ‘before and after makeover’ in history. Healthy Abby and Sick Abby.
I’m the youngest of four girls. Growing up, the things that I felt set myself apart from them were that I was A) Shy B) The most conventionally "book smart" and C) I was a really hard worker that could push through anything given enough time. My strength of will and academic success were the only things I really felt confident in. And all of that stuff went to hell because things only got worse the more I pushed, including my cognitive issues. It became hard for me to think, recall things, and read anything longer than maybe two pages. And I definitely wouldn’t be starting uni with everyone else my age. I remember my school’s university counselor coming up to me before graduation and asking, “When you’re announced, should I change my script from ‘attending Utah State University on a full-ride academic scholarship this fall’ to ‘taking a gap year?’” And boy, what a gap year it has been.
I still fantasize about really simple stupid things like what I would be reading, going grocery shopping, standing in the shower, and working out.
The before and after change wasn’t all for the worse, though. While I don’t believe these experiences are ever “worth it,” I really value the increased capacity for empathy and compassion that I have developed as a result. I think I have a better grip on what matters and what is just the bric-a-brac of life. My experiences have shown me that things like what people think about me shouldn’t give me panic attacks. And I do think these anxieties have started to hold less power over me with time.
Another key part of the identity issues is that for a long time, the doctors didn’t know what was wrong with me. Yes, eventually a persistent team of neurologists formed around me that provided me with a long freaking list of diagnoses. They tried countless tests, medications, supplements, IV therapies, exercises, diets etc. But until quite recently they couldn’t figure out many concrete physiological reasons for what was causing my symptoms. There is still some lingering disagreement and the process is ongoing.
I think having an undiagnosed debilitating condition can be one of the most uncertain situations you can be in. In no small part because at first people think you’re crazy, including the doctors you encounter, so you doubt your sanity too. That first year, I would sometimes stand up, shaking, struggling to breathe, room spinning, until I felt like I was about to pass out. The entire time I would repeat in my head: there is absolutely nothing wrong with your body, this is easy, and I am FINE—trying to see if I could make these supposedly psychosomatic symptoms go away. I didn’t feel like I had a right to be sick. I think people validate your experiences when you have a certain kind of diagnosis. Your suffering is known and it is real. But when you’re in no man’s land without a support group to call home, it feels like you’re drowning and people around you are going about their day to day, acting like nothing is happening.
H: Neurorehabilitation—what helps?
A: Occupational therapy—improving your fine motor skills, discovering work arounds... OT helps you figure out how you can participate in your day-to-day activities. Physical therapy of course. Speech therapy for communication and cognition. And psychological therapy—the trauma you’ve experienced doesn’t just fade as your physical symptoms improve.
A huge game changer for me was my psychologist in Portland. His practice worked exclusively with sick people. He specialized in Acceptance and Commitment Therapy. We talked a lot about my struggles with my identity. I remember in one session, we put different Abbys on post it notes and talked about what I felt defined each of these Abbys. We discussed how each of these Abbys coalesced to become “me.” He helped inspire and facilitate me in discovering what was at my core, what was really and truly myself and what was just an accessory. Until that point, I thought I would be happy with an academic career as a scientific researcher—what I learned is that what truly nourished me was my relationships, helping others, and contributing to my community. He helped me be willing to let go of my predetermined path and find my own way. I worked to accept the present moment and see that my current life was one worth living—not just an endless wait. I tried to do this while also opening myself up to hope for better health, which was a difficult balance. I ended up becoming passionate about reaching a place of peace in uncertainty and nurturing self compassion in myself and others.
H: What have been some of your best experiences with medical professionals?
A: 1) My first “sick” doctor was this extraordinary woman, an internal medicine doctor, who sat me down and told me that I was sick, it wasn’t in my head, and there were very few answers. She probably saved my life at that point, helping me hold on.
2) When I first saw my neurologist who became the head of my team, she walked into the room with her crazy curly hair and her chunky-heeled boots, and she openly admitted that she didn’t know what was wrong with me or if she would ever have a name for my condition, but that she would try to figure it out and improve my quality of life regardless. Other specialists had taken the attitude that if I can’t figure out what is wrong with you in a session with some tests and labs, nothing is wrong with you.
3) When one of my specialists came in on her day off, having arranged for an off the book meeting with a geneticist who had a two-year waiting list, to evaluate my case, and spent almost two hours brainstorming for ideas about possible treatment protocols.
I have been fortunate. Many complex patients like myself have very few positive experiences with doctors.
H: What are the worst and best things people have said to you about being sick?
A: Worst? My sister asked me how I was doing. I said I wasn’t doing very well. She answered with, “At least you have a rolly chair in the bathroom.” I'd say, as a rule, never start a statement to someone in pain with “at least.”
When I first became ill someone wistfully told me that I was just like Hazel Grace in The Fault in Our Stars. It really pissed me off, because there is nothing romantic about being sick. But the world flattens and objectifies sick people, you become a Beth March and embody her long suffering beauty. Or, if you’re not happy being a Beth, you get to be Colin Craven from The Secret Garden—whiny, demanding, and curable via attitude adjustment. Sometimes I just feel like screaming: my body doesn’t limit my complexity! I’m a strong, dependent woman. [laughs]
It always makes me very uncomfortable when strangers offer to heal me in public. Because although I believe in God, I don’t believe you can ask God to be healed and expect a miracle on the Las Vegas Strip.
Whenever healthy abled people give me unsolicited advice about things like diet, because it implies, whether they mean to or not, that I am sick because I’m not doing everything I can to be well—that I bear responsibility for my condition.
When people provide me reasons why this has happened to me. In doing so, they distance themselves from the reality that something like it could happen in their life at any time. Really any kind of toxic positivity (when you invalidate an individual’s negative emotions with trite optimism) or spiritual bypassing (when you use spiritual rationalization to bypass or ignore pain). Basically, whenever people cover someone's pain with cute floral wallpaper rather than sit with it. It's the kind of crap that makes the plexiglass so palpable. It cements the idea that we live in two different realities, and that you don't care to attempt understanding the one in which I reside. It means that I'm alone.
The best thing you can do is acknowledge someone’s suffering. Resist the urge to try to "solve" their problem, and just see them. Someone sent me a message about my surgery that simply read: “I’m so sorry!!!!! This f***ing blows!” It’s amazing how reassuring that is. Witness someone in their pain without turning away, and continue to show up for them without any expectations. For instance, I really struggle to reply to the people who write to me— it takes a tremendous amount of energy. So when people recognize that, don’t take issue with it, and communicate with me anyway… it means a lot. It relieves the pressure to act like I don’t have the limitations that I do, which is a big deal because constantly performing wellness is hard. Interacting with people in difficult circumstances is a topic I am passionate about though, so I am going to leave it at that for now because there will definitely be future posts dedicated entirely to it.