Rachel Browne is a musician, writer and visual artist living in Philadelphia, Pennsylvania. She is frequently on tour with her band Field Mouse and is a graduate of the Music Program at Purchase College. She is a Sagittarius, but doubtful that it means anything. You can follow her on Twitter here.
“Dearly beloved, we are gathered here today to get through this thing called life.”
— Prince, “Let’s Go Crazy”
“When will people understand that no one’s problems are special?” my sister Robin asked, verbally eye-rolling in the kitchen of our childhood home. For the previous six months we’d all been at the old house in Connecticut much more frequently, as Robin had taken off work to undergo chemotherapy at Memorial Sloan Kettering in nearby Harrison, New York.
This question sounded funny coming from her — twenty-eight years old and a few months past three grueling rounds of treatment — but it also made sense. Her sudden illness made her into more of a realist: pragmatic and somehow years wiser. In this case, she was reacting to someone’s mundane social-media ramblings about a breakup, though it probably could have been anything. Robin herself airs her grievances on the regular: she writes a column each week about her experiences with stage IV breast cancer — the difference being that her writing serves the purpose of reaching and helping others. A great, muddy expanse lies between the two disseminations, and somewhere in there is a crucial distinction.
The months that followed her diagnosis brought on a sort of floating, amorphous chaos for our family, which led me into equal parts anxiety, depression and wayward creativity. Simultaneously, the relationship I had been struggling with finally caved in, and it truly seemed like I had been placed into a different universe where nothing made any sense. When I started writing about how I felt, initially it came out as ambiguous and bleary as the chaos had presented itself; only months down the road was I able to give the words more form. My band was working on an album, and I didn’t know if those poems and letters and journal entries that were happening would be a part of it, but I kept writing them.
Back in 2001, I was diagnosed with late-stage, neurological Lyme disease, which I treated for the following six years.
A year after her diagnosis, I am sitting on the other end of that upside-down period. There are other issues at hand now, but I can see what has happened, how it changed my loved ones and me, and what came out of it. I can talk about that year so that others in similar situations might feel less alone. I am not here to complain about my life. I really only feel comfortable bitching on the Internet when it’s saturated in a “universe-is-lawless-and-all-we-can-do-is-laugh-in-horror” sort of humor. But I am going to tell you more about what some things are like, and they’re not all great. Although the issues surrounding my own health are unlike my sister’s in their immediate severity, they are chronic, painful and frustrating — and they impact my life as a musician and as a human being.
I play in a band that tours a moderate amount. It’s what I love to do, and over the past eight years I’ve put various possibilities and paths aside as I continue to try to make it with my career. This includes years of managing various part-time jobs that are “cool” with me leaving to go on tour for weeks or months at a time (thanks, all you coffee shops and restaurants!) in lieu of settling into more secure, full-time work like so many of my friends.
Before my sister was diagnosed last year, our family had already dealt with a wide range of health issues over the years. My cousin Jocelyn fought a decade-long battle with osteosarcoma and passed away in 2014 at the age of thirty-one. Autoimmune diseases run on my mother’s side, with rheumatoid arthritis, Crohn’s, lupus and psoriatic arthritis all having affected various family members. Back in 2001, I was diagnosed with late-stage, neurological Lyme disease, which I treated for the following six years. A still-controversial disease, the treatment requires the extended use of broad-spectrum antibiotics, which can, in turn, cause their own health problems. I stopped in 2007 when my blood test results were deemed “clear enough” by my doctor; however, the effects of chronic Lyme disease can last beyond the treatment.
Since then, I have lived with some pretty intense issues as a result: compromised immune system, high anxiety, memory problems, chronic pain, extreme fatigue, headaches, derealization*, insomnia and a slew of other annoying-to-read words that constitute how I often feel. After many of these issues became noticeably more extreme this past year, I opted to get a new Lyme test: it came up positive.
Touring is difficult in almost every imaginable facet, even for a healthy young person.
Touring is difficult in almost every imaginable facet, even for a healthy young person. I’m sure I don’t need to paint much of a picture: long drives, bad food, sleep deprivation — you know the deal. It does have its upsides, though; I love playing music, and the actual shows make it worth all of the unsavory parts. Plus you get to see the whole country, try the donuts in every city and essentially be on a perpetual road trip with your friends! (Someday I will write an article about all the donuts I’ve tried.)
The most challenging part of tour for me is anxiety and its insidious nature, especially when it comes to performing. With Lyme, my panic triggers have always been purely physical: if I start to feel lightheaded, for example, it can take hold, set in and make every moment of the set a battle. To combat this, I’ve tried multiple medications (still hanging out with SSRIs, shout out), cognitive behavioral therapy, meditation, acupuncture, diet changes, exercise — you name it. Over the last two years of touring, I have spent my time on stage under the influence of benzodiazepines, which (among other nasty side effects) can cause “anterograde amnesia,” i.e., interference with the ability to encode information into memories. If you think that sounds nightmarish, take a look at the “adverse effects” section of the benzodiazepine Wikipedia page. My instinct is to put the sunglasses emoji here to balance out the terrible factoids, but I’m going to resist because this isn’t a 1 a.m. tweet.
If you put all the comically unsettling information about them aside, this class of drugs certainly does its job, but tends to be a quick solution for a much deeper underlying problem. No doctor has been able to present a truly workable alternative so far.
The lyrics to the songs that ended up being on my new record, Episodic, were heavily inspired by experiencing last year (and every feeling that went with it) submerged in extreme anxiety and, conversely, through numbing anxiety medications. Everything intertwined, and I felt largely powerless to control what was happening both externally and within myself. When I am calm, there is nothing I love more than writing and playing music for people. The ever-present question is simply how to stay in that mindset without this damaging medication. When the immediate goal is to simply feel “normal,” the greater goals of finding balance and treating the symptoms healthily often fall by the wayside.
I think it really helps to know there are other people with chronic illness in your sphere.
I spent the better part of my twenties working in food service, on my feet for eight hours at a time and feeling physically exhausted beyond what a “normal” person should. It is incredibly difficult to admit to yourself that you can’t do something that you feel like you should be able to do physically. I don’t see myself as disabled, and I don’t like to make a big stink about things. I’d rather feel terrible throughout a shift than complain to a manager. My friend, Krista, who struggles with her own invisible illness (polycystic kidney disease), recently said to me, “I think no one wants to feel like they can’t do something they used to be able to do. So it’s a fine line between listening to your body and listening to your ego/mind.” I had just messaged her to talk about quitting a job that felt too physically strenuous for me, knowing she would be able to relate and share some wisdom. She was right on in this case, and after listening to my body a little longer, I gave my boss notice.
I think it really helps to know there are other people with chronic illness in your sphere. Attempting a life in the arts is a road paved with frustrations, ups and downs, small victories and self-doubt. The relief of knowing there are others who feel the same — who hurt the same, but jump back up because they share that unshakeable love for it — is the most powerful consolation I know. In some way, everyone is fighting to do what they love. I choose to keep at it every day; ultimately, it comes down to giving more energy and power to your creative work and less to the things that try to pick away at you.
Talking to friends and sharing stories can be tremendously helpful. For a long time, I felt like I was complaining if I talked about this stuff (my own illness, and later my sister’s), but I’ve learned that it’s really important to allow yourself to speak up and work things out and feel understood. Friends can be lifesavers when it comes to championing you through difficult times, but they won’t know unless you talk about what’s going on.
My sister has been NED (No Evidence of Disease) since December. She is back in Brooklyn and living her life: she works for BustedTees, paints, composes music, writes, does standup and consistently makes a lot of people laugh. She is undoubtedly altered by her ordeal, but she gets up every morning and lives the life she wants to. This pushes me to move forward every day and to keep a clear perspective on everything. The fact that our problems are not special is a gift; it means the very worst things that take up your thoughts and energy are universal. People throughout your life have and will experience the same things. We really are all in this together, and our collective problems and ability to help each other through them connects us, and maybe even offers some true refuge from the chaos.
*From mayoclinic.org: Depersonalization-derealization disorder occurs when you persistently or repeatedly have the feeling that you’re observing yourself from outside your body or you have a sense that things around you aren’t real, or both. Feelings of depersonalization and derealization can be very disturbing and may feel like you’re living in a dream.