“Oh, stars in her eyes, She fights and she sweats those sleepless nights, But she don’t mind, she loves the grind, She grinds from Monday to Friday, Works from Friday to Sunday…” – ‘6-Inch,’ Beyoncé, Lemonade.
Beyonce and Lemonade
The above quote is from a song off of Beyoncé’s album, Lemonade.
You see, the Grammy Awards are tonight. Grammys Sunday is one of my favorite Sundays: just call it my Super Bowl.
As a Beyoncé-fangirl, I’m, of course, rooting for her stellar visual album Lemonade to take home some wins, and I assume that it will.
Not only was it as visually-stunning as it was chock-full of memorable, artistic, poetic, empowering, fun, and just-plain-dope songs, but it also had a great message: the message of making lemons into lemonade.
I can’t pretend to comprehend how the importance of this album resonated with people of color, especially Black women. And I won’t try to. I may have enjoyed the album very much, and I think that it’s quite obvious that many people did. Women, especially, seemed to feel just a little bit more powerful … and a little bit more NOTICED after its launch. But I know that its primary message wasn’t intended for me. I have read that Lemonade was a love letter to Black women … and I applaud and appreciate that.
As I acknowledge that fact, though, I want to still, at the very simplest level, dissect one part of it: making lemons into lemonade — without taking anything away from the overarching cultural importance of the album (an importance that should be celebrated and recognized — not just during the Grammys or during Black History Month, but in the annals of music history to come.)
You see, as cliche as the idea of “making lemons into lemonade” sounds, it’s a difficult choice that many of us have the opportunity to make if we so choose.
But, that’s the thing: it’s difficult. And so many of us don’t make that choice. We just live with our lemons and let them turn us bitter and sour.
Making Lemons Into Lemonade as a Teen and Young Adult with JIA:
A young girl asked me recently “how I stay happy” and “how I stay positive” in spite of everything I’ve been through, health-wise. I told her the truth: there have been times where I’ve been quite unhappy about my health situation, and I’m sure that these tough times will continue throughout my life.
Being positive doesn’t mean pretending that everything is perfect, it’s about how you react in the midst of imperfection.
Everyone will be handed lemons in their lifetimes, and some will be dealt more sour than sweet. But what are you going to do with your lemons?
I know that even with my so-called “lemons,” I have certain privileges and advantages that others may not have.
But recognizing that fact still doesn’t make living with illness or disability easy, per se.
See, when I was younger, I “just” had JIA (I say “just” in quotation marks mostly for lack of a better term, because as kids or teens with JIA or parents of JA kids know, juvenile arthritis can be a serious and life-altering disease in and of itself.)
During this time, my illness handed me a few lemons. That’s when I first began making my own lemonade.
For example, I had to quit sports — so I turned to fashion design and writing. I looked for extracurricular activities to join that wouldn’t involve physical activity: planning school dances, doing service or volunteer projects, newspaper yearbook, theater arts, youth group, art club, and so on.
Then, in college, I dreamt of doing PR, marketing, or management in the fashion or music industry, or moving to NYC and becoming a magazine columnist and/or best-selling author. I took marketing and English courses, and minored in music business, sketching my fashion designs on the side, joining the student newspaper, and writing song lyrics in my free time.
Slushy Lemonade and Crushed-Ice Dreams:
I was then handed even more lemons.
During my sophomore year of college, I got diagnosed with a form of facial paralysis called Bell’s Palsy, and my health has gone downhill ever since. I took a medical leave of absence for a semester, and during that time, the music business program was disassembled. (It was the main reason I’d gone to that particular university.)
I decided to keep at it and try my best. I continued dreaming big, envisioning a life that would lead me to New York City (one time even planning an impromptu road trip there with two of my friends to try to meet Britney Spears on TRL. We didn’t’ meet her, but, it was still a fun memory! My parents weren’t thrilled that I drove their vehicle out of state without asking, many hours away, when I should have been in classes, but, we all rebel a little bit during our college years, no?)
It just became more difficult, though, as time went on. I still had juvenile idiopathic arthritis (at the time still known as juvenile rheumatoid arthritis,) and had mostly recovered from Bell’s Palsy. But, I was then misdiagnosed with depression and fibromyalgia. (It would later be discovered that I actually had Chiari malformation, Celiac disease, and chronic migraine — and was also confirmed by various doctors since that I neither have depression nor fibromyalgia. But, I digress.)
My health started to improve slightly, but I was not able to keep up a normal social life at college and I thought that maybe moving home and being closer to my doctors and my family may be a better choice.
I often felt completely misunderstood at this time in my life. I was sick, I was suffering, and I was in an unhealthy romantic relationship on top of it. Also, since I was misdiagnosed several times, I was on medications that I didn’t even need to be on. These drugs left me in a permanent brain fog and not able to think or function quite clearly. Trust me: this is quite a struggle for a writer, a Mensan, and for someone like myself who is an intellectual academic at heart.
Mixing these meds with little sleep, an unhealthy diet, and regular intake of alcohol while trying to keep up normal college activities on top of classes (meaning: going out, drinking, attending parties, having fun,) was not always the wisest choice. I don’t condone it, and I don’t think that I always took care of myself or attended to my friendships with enough care at this time of my life. My grades were fine, but I was not. I am not necessarily ashamed of this part of my story, but it was hard. This was the most “down,” and, despite my not being a selfish person by nature, the most selfish I’ve ever been in my life — mostly because it was hard for me to think of anything beyond the bubble of how terrible I was feeling.
I wanted a do-over.
So I transferred schools. I enrolled at the University of Pittsburgh, and moved back home. Eventually, my “lemons” began to dissolve themselves into lemonade, mostly becuase of the positive choices I was making.
I made good choices like filling my schedule to the brim with working part time, and taking full time classes including humanities coursework in English Literature, English Writing, and Communication. I interned at an ad agency and on-air at our local iHeartRadio station, 96.1 KISS fm. I tutored a graduate student in English as a Second Language, and I worked at an after-school program with elementary school kids. I maintained a social life, dated around, and had fun, but I tried to keep my eye on the prize: my career.
I had a major interest in the soft sciences like psychology, sociology, and philosophy, and so I’d often thought about social work or counseling and the like, but I still hadn’t given up on doing something in the music industry, or becoming a “real” writer. I still had an interest in fashion, too. I felt called to help people, but at the same time, I did anything I could to stay “hip” to what was going on in these industries: attending concerts and fashion shows, dabbling in modeling, spokesmodel, and promo work, working at the radio station, and reading and writing as much as I could. I began picking up freelance writing work for magazines at age 18 and as I advanced towards my later years in college, I looked for even more.
I was looking the best I ever had, and feeling the best about myself and my future, too. My physical health was, dare I say, even pretty good, also. Finally!
And then I met my husband. I was open with him about some of my health issues from our first date. I saw no reason to hide that part of my life. I was not ashamed of it. Besides, everything had improved. I was on Enbrel for my RA and it was pretty much under control. Other than fatigue, I’d really had none of the other pressing symptoms that had haunted me through much of my college career. As I approached graduation (a little later than my peers due to my medical withdrawal,) I contemplated my future. I had earned my Bachelor’s Degree of the Arts, but I’d started to realize that moving to NYC with no job prospects there and no support system would not be a great fit for me. And although I was feeling good at that time, I knew that at any time, my conditions could come back even worse. After all, autoimmune diseases like JIA are incurable, unpredictable, and usually lifelong.
Would I be able to keep up the fast-paced and stressful lifestyle that would come with a job in the music business or the fashion industry? I wasn’t so sure anymore.
A part of me, perhaps subconsciously, knew that maybe my health situation wasn’t actually good enough for me to pursue my “pie-in-the-sky” career goals of bright lights and big cities. Or, because I’m a little-bit-psychic (that’s a whole other blog post,) maybe I intuitively knew things could possibly get worse. So maybe that dream wasn’t the most realistic for me anymore.
During that last semester of college, though, I grew to greatly admire a few of my professors. I knew that there was something to be said for a rewarding, stable, steady job — a job where I could really celebrate my love for reading and writing, and pass that love and knowledge on to young people. A job where I could make an impact and touch the lives of others.
So, I decided to set a new goal: I’d become a teacher — and maybe even, someday, a professor!
I passed my MAT exams with flying colors and enrolled in graduate school for education. Simultaneously, I worked full-time during the day as the secretary of a private Catholic school where I also was the cheerleading coach. Occasionally, I got to teach lessons or watch a class if a teacher was out. Two or three evenings a week, i would drive straight from work to my graduate classes. I was thrilled to be on my way to earning my Master’s Degree and I enjoyed it even more than I did my undergrad experience. You see, I love learning — and I did very well in my graduate program, without the distractions of frat parties and internships.
Unfortunately, life handed me yet another lemon. Because, duh. That’s how this story goes, lol.
While I was working at the Catholic school and on my way to earn my Master’s in Education, I began to rapidly lose weight, experience severe migraines, neurological symptoms, and “morning sickness” … without being pregnant. My fatigue was unbearable and some of my symptoms at this time were scary. I was diagnosed with Celiac disease. Around this same time, I began to experience some local reactions to my Enbrel injections for my RA and had to go off of Enbrel, which had served me pretty well.
Within months, I became very ill. Even though I’d gone gluten-free, my health went downhill yet again. I had to take a leave from my job under FMLA, have an unexpected knee surgery, and eventually made one of the hardest decisions I’ve ever had to make: I withdrew from my Master’s program halfway through. It was a two-year program, and I had done very well that first year. But I knew that I had one year of student teaching left to go, in order to earn my Master’s Degree and my teaching certificate. It was pretty obvious to me and those close to me that, based on the amount of time I had to call off from my school secretary job, or go into work late/leave early, that I would not be able to commit to a full-time teaching job due to the unpredictability of my body and these diseases. It was extremely saddening.
This was the point in my life where I really had to decide what to do with all of these lemons. I briefly became a little depressed after my knee surgery.
What Kind of Lemonade Does God Want Me to Make?
I mean, I’d given up sports. I’d given up my NYC dreams of working in music or fashion, or becoming a famous writer holed up in my Manhattan apartment. I’d given up my dreams of becoming a teacher or a professor, perhaps even teaching at my alma mater, the University of Pittsburgh. I’d even lost friends because of “side effects” of my illnesses.
What kind of lemonade did God expect me to make?
It eventually dawned on me. My lemons would BECOME my work. So, I worked at the Arthritis Foundation and began blogging and writing about my experiences. Even during other times of my life where I was working full-time corporate marketing jobs, I never stopped my work as a patient blogger and advocate for people with disabilities and chronic illnesses.
I had more lemons come my way: POTS, Chiari and brain surgery, dystonia, and more.
But I knew what I had to do.
I’d use my lemons. I would use my illnesses and my health problems as the proverbial fuel for my fire. I would make something of myself in spite of and because of my illnesses.
I always wanted to write. I’d write about my health issues. I’d always wanted to educate. I’d educate people about my health problems. I always felt called to help people. I’d help people going through similar medical issues to my own. I wanted people to know my name. So I’d make them know my name. And maybe I wasn’t going to be in magazines on a red carpet or because I was the next “Carrie Bradshaw” or Rachel Zoe, Lizzie Grubman, Tim Gunn, or Kelley Cutrone. I wasn’t going to be the next Anna Wintour or Joanna Coles. Maybe I wasn’t going to be the female Scooter Braun. Or the next Grammy-winning songwriter.
But I would be something. I would be someone, and the work that I would do would mean something. It would have an impact — maybe not on the whole world, maybe not in the mainstream media or in popular culture, but it would have impact in the communities of people who it needed to reach. And that matters.
Who Am I Without My Lemons?
I have often questioned if I’d be where I am today if I weren’t sick. Would Oprah and the United Nations have ever noticed my work? Would I be quoted in Teen Vogue, Prevention magazine, FOX News, ABC News, on the Today Show website, and more? Would I have won any awards? Would I have 3 published books out and for sale? Would any care about who I am or what I do if I weren’t sick?
Who would I be without my lemons?
I have laid awake at night (many times) pondering this fact, probing at it, and feeling like a fraud. If I’m going to be completely honest, I’ll tell you this: I suffer from impostor syndrome. I feel like maybe I don’t deserve the small successes I enjoy, because in some way, I feel like I am exploiting my illnesses, and being a sell-out: that no one would know about or care about my work if I weren’t sick.
And then I realize, it doesn’t matter. I am who I am, and I am what I am. I do what I do. It is what it is.
It’s impossible to separate who I am now from who I could have been if I wasn’t sick. Trust me: I think of this often. I pine after the “who I could have been,” and I mourn that person. But, I don’t know that person. I’ve never met her, and I never will. Even if I got healthy overnight by some miracle, I’d still always have been shaped by the experiences of my life, lemons and all.
I have always been ambitious and my talents would have remained the same. Maybe my illnesses have given me a niche … but they certainly haven’t given me an edge: if anything, they’ve held me back from reaching my full potential.
But I can’t think about that: all I can think about is what I’ve done and what I can continue to do despite being sick.
Would I have led a different life without all those lemons thrown at me, the lemons that continue to come from every angle? I’m sure I would have. It could be a better life, but it could also have been a worse life. And all I can worry about is the present: this life I have now. Because this life is the only life I get. I will do as best with this life as I can; I will continue turning those proverbial lemons into lemonade. I will continue to make things happen for myself instead of idly letting life happen to me. I will take the bad with the good. I will focus on what I have done and what I can do, instead of what I’ve missed out on, and what I can’t do. There’s no use dwelling on the past, on our imperfections, or on what could have been.
I will continue to move forward. Some of my achievements will be in relation to my health problems. Some of them will not. Some of them will be a blend of things both related to my health and unrelated. My health will hold me back at times. But my struggle will also, at times, give me strength. It will give me a platform. An insight. A sense of empathy and compassion. A broader world view.
I’m not thankful for my illnesses but I am thankful for the things they’ve taught me. They’ve strengthened my character and tested my patience and my faith. They’ve shown me who my real friends are, and they have taught me who truly cares.
Sure, I’ve been handed lemons, but like Beyoncé, I’m proud of my “lemonade,” and I hope that you all are proud of the lemons you’ve turned into lemonade, too.
I’ll close with another quote from the Lemonade album:
“I’m telling these tears, go and fall away, fall away. May the last one burn into flames.” – ‘Freedom,’ Beyoncé, Lemonade.
PS: Bonus giveaway alert for taking the time to read this long blog post! You’ve got a chance to win a signed copy of my books Chronically Positive and Sick Idiot! The first person to answer the following question correctly with an explanation wins this prize bundle:
Answer this question: what nickname do Beyoncé and I share?
Queen Bey is a feminist and would want you to read this: Missed my recent article on Gender Bias Against Female Pain Patients? Check it out on the Huffington Post here or see the original on Healthline.com, here.