rheum | Ashley Boynes-Shuck

This is a longer post, but I invite you to please read on to learn more about how music and writing helped me cope with everything from childhood illness, to facial paralysis, brain surgery, joint replacements, broken dreams, grief, and more! At the end, you can also learn about my birthday fundraiser for Sweet Relief Musicians Fund, which benefits sick and disabled musicians. Enjoy!

I basically came out of the womb being obsessed with music, fashion, pop culture, and movies. (Also? Karaoke. My toxic trait is doing karaoke almost any time there’s an opportunity despite not being any good, whatsoever.)

In the early ’90s, I was enamored by Michael Jackson and Paula Abdul. My first concert was Paula, my first cassette single that I ever bought was her song, Rush Rush, and I used to dress up and perform like Michael Jackson for my family. But, despite playing saxophone and growing up in a household that listened to a lot of country and pop, I was really into alternative rock, hard rock, and grunge music. One of the first albums I ever got (on CD) was Sixteen Stone by the band, Bush. I remember excitedly taking it to my cousin Jacquie’s house on Christmas Day where we holed up in her room and listened to it on repeat. She later reminded me that I would record videos from MTV and pause them so I could kiss Gavin Rossdale through the TV screen. (Embarrassing, but … yeah, that tracks.)

“My toxic trait is doing karaoke almost any time there’s an opportunity.”

Bush was my favorite band and still is. In fact, despite me just having seen them here in Pittsburgh a couple weeks ago, my husband bought me a ticket to go visit that same cousin Jacquie in North Carolina for my birthday next month … to see Bush together in person for their Raleigh show! Talk about full circle!

At any rate, I’ve been to over 100 concerts, and it never gets old. Ever! I know that for some, that may seem strange, obsessive, childish, or like a waste of money. But I want to offer some insight as to why it’s so meaningful to me.

When I was in elementary school, I was diagnosed with a musculoskeletal autoimmune condition called juvenile idiopathic arthritis (that later turned into adult rheumatoid arthritis.) I was forced to eventually give up sports. That was tough, because I played softball, and I LOVED it. Ate, slept, breathed softball. It’s bittersweet for me to say that was pretty damn good, too. I also played basketball and was a cheerleader, and was always outside doing something active, but, because of my condition, I was advised to give up sports and to take it easy. So, take it easy, I did.

When that happened, I started to cope with the feelings that came along with a chronic and painful illness by turning to writing and music. Those two things (and fashion!) kind of helped me to discover who I was — especially who I was outside of this medical condition. I became very focused on creative outlets: music, designing clothes, entering screenwriting contests, drama club, theatre arts, and more. I devoured MTV’s TRL every day, and even applied to be an MTV VJ! (*And did embarrassing things like enter Britney Spears lookalike contests. As a side note, I actually did place second!)

Anyway, I really, at that point, thought that my career path was going to be some kind of writing-related endeavor, perhaps something of that nature in the entertainment industry. I was specifically interested in music — definitely not as a performer myself, but behind the scenes. Maybe managing a band or doing concert reviews, writing for Rolling Stone, working for MTV, being an artist’s publicist, or even being a lyricist myself. Something. Anything!

I wanted music or showbiz to be a part of my every day on a professional level, and not just as a fan. So, I started off in college in marketing, then switched over to become an English major with a Music Business minor, and my favorite class was the History of Rock N’ Roll. In my free time, I wrote song lyrics, wrote for the entertainment section of the college newspaper, wrote poetry for a literary journal, was on the CampusFest concert committee, was on the Entertainment committee for the American Cancer Society Relay for Life, wrote a Sex & the City style op-ed column, and took random road trips with my friends, like going to NYC to hang outside the MTV studios, or jaunting off to Cleveland for the Rock N’ Roll Hall of Fame.

However, as my luck would have it, before I could finish college (which I did eventually do, and then some!) I was unfortunately stricken by another medical condition. I woke up one day with the left side of my face paralyzed, lopsided, unmoving. Yeah — paralyzed! So, I had to take a temporary medical withdrawal from school.

It was scary, to say the least, and also did a number on my self-esteem. Plus, I was very tired, had to get all these medical tests done, and was truly sick for months, plus the medical leave — it sucked. The condition, called, Bell’s Palsy, did eventually improve, thank goodness, and my face went back to being fairly symmetrical. But by the time I was able to go back to college, guess what?!? The university had done away with the music business program. Womp, womp. Cue the sad trombone.

“Womp, womp. Cue the sad trombone.”

That minor was essentially why I even attended that school in the first place, and I was very upset. Between that and my illness, I felt like a was losing a piece of my identity. So I transferred closer to home, and focused on English Writing & Literature, Communications, and Psychology, in addition to working part-time, and doing spokesmodel and promo work. I also got an awesome internship at a radio station, which was so very much up my alley — and an opportunity for which I’ll forever be grateful. I worked on-air as an intern with DJ Bonics, (who is now Wiz Khalifa’s DJ,) at 96.1 kiss fm, which at the time was a ClearChannel station, and now is iHeartRadio. It’s Top 40, mostly pop. It was a lot of fun, but very challenging, because medically speaking, I still wasn’t exactly… great.

I sometimes had to miss shifts at the radio station, which no one ever understood because I “looked” fine, and sometimes was able to go out to dance clubs and frat parties, and behave like your average college student. But, I was finding it increasingly hard to be out so often, at nightclubs after the on-air shift, doing promotional duties, hosting, or recording commercials. Yet it was super-cool because I got to learn about the industry, go to concerts, interview celebrities and musicians, go on their tour buses, etc. Plus, I LOVED being on the radio! Sadly, though, I was realizing that, due to my medical issues, maybe the constant late nights and fast-paced lifestyle of the music industry wasn’t for me, at least not during that season of my life.

While I was navigating this uncertain and transitional time, I really dove into my fiction writing and blogging… and met my husband! Thank goodness that I did, because he’s been one of the biggest blessings to me. He’s my best friend, we are perfect for one another, and he’s so encouraging and supportive. I love him dearly and I couldn’t be more grateful to have found him. So, I remind myself that maybe had I pursued my entertainment industry career dreams, I would not have ended up with him! I do take solace in that: that things worked out just how they were meant to. But, it is still kind of sad sometimes that those aspirations had to take a backseat because of my health, and things didn’t really get much better in that area.

I was freelance writing and working full-time as a school secretary while figuring out what my next steps would be professionally. During that time, I began to get chronic migraines and was diagnosed with another autoimmune condition called celiac disease. Celiac disease is a genetic autoimmune condition that can become quite serious. It’s more than just being gluten-free; the inability to absorb gluten proteins can actually cause literal malnutrition, among other complications.

By that time, I’d all but abandoned my dreams of working in the industry. But, I decided to reignite my passions at least somewhat and started a blog called Glitzburgh, which focused on music, celebrities, fashion, and the local movie industry, which is surprisingly thriving here in Pittsburgh. I also wrote for a fashion and pop culture magazine called Maniac. Through my work with Maniac Magazine and Glitzburgh, I got to fulfill that desire and fill that cup of attending concerts, interviewing artists, visiting movie sets, going to fashion shows, doing photo shoots, and more. I was really into all of it, but then 2011 rolled around, and guess what — I found out that I needed freaking brain surgery! I kid you not. Brain surgery.

I had a congenital condition called Chiari malformation, and needed what was essentially a combined brain and neck surgery, (a resection, duraplasty, and laminectomy) about 4.5 months before my wedding. It was pretty wild trying to recover from that, and have my hair grow back, and all that kind of stuff before getting married on the beach just months later.

So, the piece here that’s related to this musical thread throughout my life is that I had tickets to see Lady Gaga around the time of this new diagnosis, and I was so excited. But, naturally, because it was a brain surgery and all, I ended up not being able to go to the concert. However… that April, I got a call that I was invited to be in the audience for one of Oprah Winfrey’s last-ever shows! I had watched Oprah since I was in high school, so I was flabbergasted that I was able to go to Harpo Studios in Chicago with my mom that April. When we got there, there were all kinds of cool guests and fun segments. I mean, we even went to the movies with actor Johnny Depp! (But that’s another story for another day.)

One of the cooler things (to me, at least,) was this: we were about third row in Oprah’s studio audience, when they rolled out this ornate stiletto-shaped piano. Yes – a big high-heel piano! Once I saw that, I just knew in my gut that I was going to see Lady Gaga for the first time live, after all!

She came out and did a couple of songs, one of which was Born This Way. Given my medical conditions, that song had become somewhat of an anthem for me. She says the line in that songs about “whether life’s disabilities leave you outcast, bullied, or teased,” and yeah, I did face some isolation, loneliness, bullying, trolling, all of that because of my medical conditions, which are hard for people to believe or understand, especially because they are unpredictable and largely invisible.

Getting to see Lady Gaga perform Born This Way live, with my mom, just three rows away, only a couple months after recovering from brain surgery, in the Oprah audience, for one of Oprah’s last shows ever, was just an experience I’ll never forget. So, despite my illnesses, I do still have cool moments like that and others throughout my life, nonetheless.

And also, despite many accolades and what others may see as some cool accomplishments, there have been so many times that either my pain, or joint issues, or immune system problems would kind of ruin or change things for me. Some of those things have been more serious. For example, it’s all impacted my career path, family planning choices, etc. But, some of the things illness has screwed up has been more shallow or frivolous, like having to miss the Rolling Stones and Harry Styles concerts and Rocky Horror Picture Show last year because of surgery side effects after a thumb joint replacement and tonsillectomy. (Yup — thumb joint replacements are a thing!)

So, yeah, missing concerts isn’t major, but all of those little disappointments due tend to add up.

The reason I say all of that, is this: I know my excessive level of interest in all of this is not what some would consider to be “normal,” but I nonetheless will continue to try to go to as many concerts as I can.

I try to enjoy as many experiences in life as I can, because I know there will be times that I won’t be able to do the things I want to do and the things I love to do. I know there will be limitations and disappointments. And I know that as I get older, it might be even harder to do and enjoy those things fully or in the same way, especially given the fact that I still have the migraines, the celiac, and the RA that has wreaked havoc on all of my joints, and, so far, does not have a cure.

“Music has been the through-line in and soundtrack to my life.”

And so, music has been the through-line in and soundtrack to my life. For me, it’s also just about clinging to what speaks to your soul despite any hardships you’re facing. When you’re constantly sidelined, or having to pivot, or having to take or create a detour for yourself because of your own body behaving in a way that is outside of your control, you look for what you can control. You find moments of joy and happiness where you can. For me, that’s nature, animals, fashion, travel, kayaking, birdwatching, writing, movies, music, and, yes, … going to shows and concerts.

Any little thing that I can find or do that allows me to enjoy life more fully or more joyfully, I’m ready to grasp onto it! It’s not me being obsessive or spoiled or a groupie, or whatever; it’s because I have such a profound love and respect for music, for art, for the craft and the industry, and more so because literally there is no other place or time that I feel more like myself than at a live concert.

When I am taking in live music … in that environment … those special moments counting down waiting for the artist or the band to take the stage … that electric feeling … or the feeling when there’s a slower song and thousands of people are singing together united as one … those moments in life are what I chase. That’s one of the things that bring me joy. It’s what gives me that spark of inspiration. Those moments are literally when I feel most like myself. That feeling. It fills my cup. I want to keep chasing it!

I don’t think I need to defend that, because that is what music and art is for. It’s for people to enjoy; it’s for people to find inspiration; it’s for people to come together. I think that’s the purpose, right? Yet, my birthday is next month, and I’m at this age where it’s almost seen as age-inappropriate or frowned upon to constantly go out to concerts and stuff. It seems frivolous; it seems silly or weird to people.

But, honestly – says who?

Who gets to say what’s weird or what other people should spend their own time and money on? My husband and I don’t have kids. We have three dogs; we have a parrot; we have a little betta fish. But we don’t have human children, so, we spend money on traveling; he spends money on races and competitions; I spend money on going to concerts.

And I kind of need all of that “silly” stuff. The concerts, the magazines, the podcasts, the videos from shows, the tunes blaring from my Alexa, the piano in my living room, the Queen songs on repeat. I need it, because it fills me up for the days where I’m not doing so hot. I need it for the days where maybe my mental health isn’t great, or my physical health is suffering, or I’m laying on my couch crying in extreme pain, or I have a migraine so bad that I can barely see and I’m nauseous.

Or for the days where I’m mourning my dreams.

Those are the grief-filled days that I scroll through and look at past concert pictures, or watch videos I took at a show, where I’ll just listen to my favorite artists, or watch a music documentary. On those days, all of it feels rather necessary. Music is more than a boost of serotonin or dopamine. It’s more than a hobby or an interest. It’s more than background noise. Music is survival.

“Music is survival.”

Concerts, fashion, music, art … these are things that some of us cling to when we’re having a rough go of it. It can be really disheartening to be sick or in pain, and scary to think about the future and know that some of your medical problems could likely get worse. It’s a very discouraging notion, so, having things to look forward to can feel very important. Those things don’t even have to cost money or be anything big. Just SOMETHING. Anything.

And – you only live once, so go to the concert if you can, even if you have to go alone. I recognize that while a lot of these cool opportunities came to me because I worked and hustled to make it happen, there’s also a definite level of privilege here. I do know that. I am deeply, endlessly thankful, grateful, and blessed, and feel lucky that so far I’ve been able to take in these wonderful experiences, because I would honestly feel pretty lost and broken without it.

I mean, even when I don’t feel well or have those lost and broken moments occurring in real time, going to a concert is still worth it to me, as crazy as that sounds. I mean, I’m the person with poor judgment who went to a Beyonce concert with a migraine, but that’s also another story for another day. I do tend to push myself and occasionally pay for it later. Sometimes, I think: I can be hurting and feeling like crap at home on my couch, or, I can be hurting and feeling like crap taking in a once-in-a-lifetime show. If I’m at all able — and sometimes I’m not — I’m gonna push myself do the latter by taking in the show. I’m not always able to do that, and I know not everyone has that choice, but if I do have that option, I’m usually taking it.

“Go to the concert if you can, even if you have to go alone.”

I once saw Ed Sheeran with my bestie Kristen, a day or two after one of my grandmothers, Eileen, died, which was also a day or two before my knee replacement surgery. And that concert with my friend, despite my bereavement and my worry, lifted me; it was a moment of respite from a very sad and stressful time. Looking around the sold-out arena during one of Ed’s ever-emotional songs, seeing all of the phones lighting up the space like stars in a night sky, everyone singing in harmony, was utterly beautiful and I felt like my Nana, Eileen, was with me. I debated even going to that concert in the first place, but it ended up being somewhat healing, at least for that moment in time. That was with my one grandma’s passing. My other Grandma, Joanie, lived in Vegas. In 2020, I was able to say goodbye to her before she passed away, in a sense because of music, since the reason I traveled to Vegas that time was to see a Bush concert at the House of Blues, Mandalay Bay. Given the start of the covid-19 pandemic and all that was going on in the world, had I not had that concert ticket already purchased, I may not have taken that trip, and might have missed my chance to say goodbye to my grandma. I treasure being able to do so!

So, music matters; it can bring you to where you’re meant to be or can bring you through difficult situations.

It can bring joy. And, really, who are we to judge anyone’s joy?

Especially if, for some, that joy is occasionally hard to come by. I, for one, just want to soak it up! Not just while I’m still physically able to, but also — who knows when the last time is you’ll get to see any given artist or band perform live, for whatever reason!

Being at a concert can really inspire and uplift on a creative or artistic level, too. Just going to several live shows recently left me so creatively ignited. Despite having 3 books published already and two more, maybe three, in the works, I hadn’t been writing or creating for awhile. I was kind of stuck and stagnant, because, while I love it, my full-time day job is in people management for a health tech company and my part-time job is for a medical app. Both fantastic, both wonderful, both important work in the health tech space, and I do enjoy these jobs — but they are just not regularly engaging the part of my brain that seeks out music, imagination, creativity and beauty. And, yeah, I have those two fiction books in progress, but until recently, I was just stalled.

Yet, during these last couple weeks, the inspiration and creativity was refreshed and reignited for me, simply by seeing some great movies and being at some live shows, including a stand-up comedy show and a few concerts. There’s something to be said for the contagious energy and inspiration that comes from and goes on at a concert, or from meeting with or being surrounded by other like-minded creative folks who are as passionate as you.

Music does heal, and it does bring people together. It’s attached to some of my very best memories, and helped me get through difficult times, too.

So, ya know, maybe I wasn’t able to go on the professional career path that I wanted to in the industry, but me taking in live shows, buying albums, writing my own song lyrics, collecting music merch or memorabilia, hosting my entertainment and music podcasts, posting about my favs on social media, blasting Aerosmith and Bush, Britney and Lizzo, Gaga and Garbage, Metallica and Kings of Leon while I do my chores — that’s me staying connected to the industry and to music, in my own little way.

It’s me focusing on what I can do, instead of dwelling on what I cannot. It’s turning those proverbial lemons into lemonade, and, in some ways, living vicariously through others.

Illness can take things from you, for sure … but you don’t have to let it destroy you. Sometimes it’s just a matter of shifting perspective, and of finding new ways to adapt and adjust, and navigating how to best incorporate things into your life that make you happy. So that’s what I have been trying to do, and that’s what music has meant to me.

Listen to Badly Branded and/or Deconstructing Bush on Spotify, Anchor, Apple, Google, Stitcher, or Audacy! There’s even a spoken version of this blog posted on 8/22/22.

Read my poems on Instagram at @abshuck_writes or view my main IG at @ash_ambshuck. Follow me on Facebook, here, or connect with me on LinkedIn, here. And – please, check out my Linktree and/or my main site at abshuck.com.

** For my birthday this year, instead of doing my usual fundraiser for the Sea Turtle Conservancy, I am hosting a fundraiser and gifting my own donation to the Sweet Relief Musicians Fund which helps career musicians who are experiencing illness, disability or age-related problems. Their mission is “healing musicians in need.” I chose this charity because it meres two of my great passions, health and music. You can donate here, or through my Facebook, Linktree, or Instagram. And any eventual proceeds from my Deconstructing Bush podcast specifically will also go to Sweet Relief!