Some of you are new here, specifically those friends I made from my time riding in a Krewe of King Arthur Mardi Gras float in New Orleans this year. I am Shannon Maria, a 43-year-old Xennial with Systemic Scleroderma, Pulmonary Fibrosis and Bronchiectasis diagnosed 15 months ago with a 3-5 year prognosis. I am on 24/7 Supplemental Oxygen and primarily use an electric wheelchair to navigate the world.
My life has been amazing. I’ve explored a wide variety of careers, traveled much of the world, met some of the most amazing people, and am spending my remaining time living intentionally and in a place of Embracing Joy. This involves knocking out my Bucket List and saying, “yes!” to opportunities as they arise.
Welcome to my corner of the Internet where I chronicle my thoughts on dying, travel, acceptance, and life. I use it to work through some of my more complicated thoughts and hopefully to remind you to slow down and appreciate simple pleasures. I don’t publish often; I try to reserve a full blog post for when I’ve got something to say. For more light-hearted fun, you can follow-me on Facebook.
I’m a recovered workaholic, admittedly for most of my life I tied my productivity to my self-worth, but I can now confidently say that I am infinitely happier and wildly less productive. Since my diagnosis I have: gotten my first tattoo, had a fancy Downton Abbey style dinner party, seen the Savannah Bananas, flown Mint class, ridden in a limo and eaten at a Michelin recommended soup dumpling restaurant! I’ve also traveled to the Azores, London, Stratford-Upon-Avon, Wrexham, Paris, Barcelona, a Mediterranean cruise, a Southern Caribbean cruise and reconnected with dozens of dynamic humans that have positively impacted my life.
Riding in a Mardi Gras parade is just one of many experiences that I have been blessed with since I’ve gotten sick. I see myself slowing down, but I also realize that I continually find myself in a place of gratitude for even life’s simplest things.
If you’d like to know more, I welcome the follow on YouTube or Instagram. If you feel inclined to help support my Bucket List or contribute towards my Out-of-Pocket medical expenses, a dear friend set up a GoFundMe.
Thanks for dropping by. We have fun here. All are welcomed.
And a big thank you to WWLTV News New Orleans for this beautiful feature they did about my ride with the Krewe of King Arthur!
We grew up poor. Like many kids, I had no idea. I found fun all around me and never questioned the differences between my childhood experiences and that of my friends. Our splurges were rare but they were the epitome of luxury. What did they include? Real Jif peanut butter, instead of the Big Top Brand of the rest of our groceries. The Disney Channel, because it required a subscription but Mom felt it was educational. And a yearly trip to the PA Renaissance Faire.
It began in 1987, but it was the same every year- we went on Labor Day Monday because Kids got in free. We ate a big breakfast before we went in, and I would get an Italian Pie at 4pm during chess because there was no line.
From the moment I walked through the gate, I was enraptured by the energy, the music, the accents! I was only 5, I think Mary Poppins was the only British I had ever heard but I understood it like I was fluent- my mother had more trouble adjusting. She never really understood as we watched guests get plucked from the audience to have swords juggled by their faces or be hypnotized. My mouth was agape trying to take in everything I could. I was drawn in by the street bits of men declaring their love with roses and women swooning from balconies. But everything changed when you heard a Yeoman bellow, “Make Way for the Queen!”.
In floated a woman surrounded by Guards and Ladies-in-Waiting. In the early years, all of the costumes were passable at best, even the queen was basically a walking velvet couch, but the clothes didn’t matter. The presence did. She used only her voice, no amplification, to address the “townspeople” and guests of Mount Hope. She expressed her love for her people and excitement for the day’s festivities. Onwards she marched to be amongst her people, and that was it. I was a 5-year-old girl who knew what I wanted to be when I grew up.
From then on, whenever we went I wanted to wear a costume- specifically that of a Lady. Keep in mind, we were poor… so I spent many hot, August days wearing polyester bridesmaid dresses that my mom thrifted or borrowed in the 1900’s. In year 2 or 3 I convinced Mom to get me a purple princess hat with a veil from Hats by Rebecca, a vendor who was there so long that 20 years later my Grandma helped work at her shop.
I struck GOLD in 5th grade when my LEAP Class went to a School Day at the faire and unbeknownst to me my teacher submitted me to by Ladied by the Queen *with a huge group of other students. It didn’t matter, they read my name, I took a knee. I was shaking with nerves I was so elated. One step closer.
When I turned 16, I HAD to get my driver’s license because I drove all my friends to faire where we worked. I made $5.15/hour selling Cloister Water by the Joust. I was so good at it that my boss would even let me sell on rainy days. Most of my coworkers were happy to be earning a paycheck; I was working towards my dream. I stood out enough that Tom Roy, one of the actor/directors on their professional cast, asked me if I wanted to take his Improv class in the off season. I was the youngest person there by far but I had the drive and he felt like with the right tools, I could do it!
My sophomore year of college, I auditioned and finally made it onto the Blackfryar (volunteer) cast. I was a scullery wench but I was actually a human sponge. I wanted to learn every accent, song, history fact they could possibly teach me. I got used to bowing super low and watching my heart float out of my chest every time a Lady in a fancy dress walked by. In 2002 they were desperate for women to support the queen, and though I was young I jumped at the chance! My First year as a Lady! I played Lady Amanda Chase because my friend thought the name was funny. Little did we know how long she’d hang around.
I remained a Blackfryar through 2003. When I auditioned in 2005, with my Bachelors in Theatre I was finally able to become a coveted Bacchanalian! Now they taught me stage combat, stage presence, vocal projection as well as how to take care of your body when you are working it so hard physically every day. That was the 25th Anniversary season. I felt like I was a part of something truly special. Even better, my absolute favorite queen from my childhood reprised her role- Kate Ramsey. She has the biggest smile you’d ever see and can go from Queenly elegant to silly Gypsy in seconds.
Unfortunately life got in the way and I could not maintain my participation in faire as I moved away and on with other parts of my life, but in 2010 I heard they needed a Queen and asked to audition. My mom’s a hairdresser. She worked her magic making my long flowing hair look luxurious. I wore a floor length winter white coat over a tailored winter white suit and felt like a million bucks. I did well on my monologue, choked a little on my song but left feeling very queenly.
I cannot explain the heart-wrenching sadness I felt when I found out I did not get the role. I was offered a spot on cast and it ended up being the best summer of my life. They brought up experts in pyrotechnics and stunts from Disney/Universal and we learned so much. We had an amazing time doing it and we entertained tens of thousands of people as we did. Closing day as Empty Hats sang my favorite song, “Beggars to God,” I sobbed with my cast. I was sitting on the step in front of the Queen’s throne and I thought to myself, “this may be the closest you ever get to being Queen. Take it in. Enjoy every moment.”
This time my break was for more practical purposes. I was accepted into the Specialized Skills program at the CIA as a Targeter. My acting experience was considered a benefit for undercover work and I had a crash course in US Government “functionality.”
I quickly learned that the work was immensely draining emotionally and I needed something to lift me up. I started taking all my vacation days to rehearse and perform at the NJ Renaissance Faire because they had a shorter run and a condensed rehearsal period. I still got to do what I loved and balance it with a career that actually paid the bills. Fortunately, out of creative necessity the directors put together a female acapella vocal group which we named Chaste Treasure and we began performing at outside events then eventually other faires including Pittsburgh and Pocono Mountain before contracting with the PA Renaissance Faire as independent performers.
I wore a huge purple and gold dress, performed 3-4 shows a day and led a Pub Crawl through the shire. The town of Mount Hope has changed. It’s more wheelchair/stroller friendly now because it’s paved. There is far more seating and more modern food and beverage options. But the heart of the place has stayed the same. It has my heart too.
I haven’t performed there since COVID. My character’s signature move was licking faces so needless to say, COVID killed that. Then I moved away and lost myself in work until I worked myself to death and was diagnosed with Pulmonary Fibrosis. It’s a difficult thing for my brain to process that I used to bellow from these lungs to thousands of people at the joust or hundreds in crowds but now I can hardly get a few sentences out without a coughing fit. I dream about singing and performing constantly. They are happy dreams. I am not mourning what I miss. I am simply reliving the joy that it brought me.
I wrote off the Queen dream last year when I updated my Bucket List, but friends told me not to give up so soon. Though I am optimistic to my core, it would take some major creativity… I’d need a team of strong men to carry me in an old-fashioned litter or a way to hide my wheelchair. I’d need my portable oxygen and a good supply of cough drops, as well as a Lady-in-Waiting to make sure I took all my meds on time despite being a busy monarch.
But I believe that we’ve all got that SPARK in our hearts. Our one thing that just gives us life. This is mine.
Woof. The past 7-10 days have been next level. If I were in Los Angeles, I’m sure the locals would have paid tens of thousands of dollars to strip themselves as bare as what I endured last week. Let us say, I have been cleansed.
Enough people have reached out to ask if I am okay that I decided it was better to write a thorough blog with an update than try to put it in a social media post.
Mama’s birthday is January 19. I tried to do something nice for her as she is my caretaker and constant companion, never complaining and always helping. I call her my true lady-in-waiting: holding all of my accessories, handing me things as I need them, answering questions when she can tell I cannot talk. Anyway, Mama deserved a little celebration and I tried. I really did. We took a lovely 4-hour cultural tour and then went to dinner. I ordered the monkfish. Poor man’s lobster. Let me just tell you that I would happily have paid for lobster instead if it meant not getting sick.
The offending monkfish dish
Those of you that have known me for any length of time know I have owned several restaurants and run about a dozen concession stands. I know food. When the server brought the dish, on a towel, she reinforced twice that the dish was hot. I said to Mom, “if a dish it that hot, it was sitting under a heat lamp for far too long.” I know this from first-hand experience. When I touched the plate, it was heavy ceramic and hot to the core. The fish? Beautiful to look at but dried out. Wouldn’t even flake. I approached it with just a fork but needed a knife and fork to even peel off pieces. My Bad – #1.
I do confess that when we got home, I scarfed my leftover chocolate mousse (My Bad -#2) but within 90 minutes, I was miserable. I spent the next 4 1/2 days with what I can only imagine, is food poisoning – as I have never had it before. My oxygen plummeted because between the puking and coughing I couldn’t get enough air. My head tingled, my body was numb and my stomach felt like 3x’s the worst hangover of my life. A monkfish hangover. Ugh.
We had massage appointments ON her birthday, and they were kind enough not to penalize me at cancellation even though I only let them know last minute. I didn’t have the strength to hold my phone up to dial or speak. They did give Mom an extra 25 minutes since I wasn’t there, so at least she got a few moments of respite. But not I. I languished. I suffered. My insides were laid bare. I started an accidental juice cleanse because it was the first thing I could get down. Added Kombucha next.
Combined with the chaos that is unfolding in America, it seemed a good time to take a break from creating content. I certainly couldn’t speak to record anything and even holding the phone felt like exertion. It’s difficult as the eldest daughter, straight A kid always striving for an “atta girl” to ignore the constant pokes from Facebook to post. Don’t get me wrong, I make about $22/month on Facebook and though that’s laughably small, when you have no income, each dollar is appreciated! Taking a week off can cause more than a 25% dip, though it’s just 1/4 of the month. Momentum and organic views are a real thing.
Thank you everyone for the concern. I am alive, I am mended, I am refreshed. I can eat again! I am moving a bit slower as my endurance is so low, even one day being sedentary has lasting implications. I am spending my time preparing THROWS for the Mardi Gras parade in New Orleans on February 8. I will take some pictures to share, as I’m not super artsy, so I’m awfully proud of what I’ve been creating. Mom and I are looking at houses in Florida because the weather in the northeast has been brutal and we have no intention of ever enduring that again. Things are looking up.
In your head right now, I want you to introduce yourself to me. What’s your “elevator pitch” about who you are? What did you say about yourself to give context to the new people you met at holiday parties?
Chances are, if you are an American at least, after your name you likely add your profession or job title, perhaps a mention of where you went to University. But I sincerely suspect that if you’re honest with yourself as you’re sitting at home sipping tea/wine and engaging in your favorite hobbies/past times that your job isn’t what defines you.
What you do does not define who you are. Being Busy ≠ Being Important.
If the meaning of life is to give life meaning, most people I know do not find much meaning or purpose in their jobs. Many do not have the opportunity to find purpose because they are unable to detach enough from their accessibility to indulge in things that would provide fulfilling experiences.
Often, our calendars are packed full with work obligations only to have our personal planners also overflowing. We allow ourselves minimal downtime to decompress from: commute stress, coworker drama, or overbearing bosses. Our “free” time is then used to shuttle children, volunteer, or attend HOA meetings.
Stop romanticizing overwork. Don’t confuse suffering with ambition. Don’t trade your health for praise. Time is relative but life is finite.
People are what make life worth living. Relationships, experiences, support, trust, compassion, empathy are the things that make us HUMAN. Read up on deathbed wishes and when listing both memories and regrets – it’s not about the physical things, the commodities and consumerism that people remember about their decades on earth. It’s the people who touched their hearts, were impactful characters in their stories, with whom they connected deeply.
Some of my favorite memories are from a random Tuesday night dinner party that I drove 5 hours out of my way for – it was cold, rainy and we were in a dreary basement apartment but we made an excellent meal and kept breaking open bottles of wine… No phones, no television. Just 5 people sitting on mismatched chairs around a modular table having important discussions about relationships, politics, craft beer – potentially controversial but safe because of the company in which opinions were shared.
It’s so easy to look at other people and judge their choices, but since you can never really understand someone else’s reality, it is uninformed judgment and objectively unfair. Just like our love languages vary, so do our priorities as humans. Some people prefer Fame, others status symbols and material possessions, some comfort and others creating memories. But for me, the value of life is people. Those people may be family but they don’t have to be. As humans we are able to form such strong bonds, but loyalty and trust are what set us apart.
It takes a village not only applies to raising children, but our day-to-day is considerably enhanced if we work cooperatively with our neighbors, extended families, and community networks. These people, these relationships, are what endure despite floods, hurricanes and natural disasters. They are what will keep your belly full when times are lean and laughing when things are heavy. What memories that you make with these folks will be what you remember as you reflect on a life well-lived.
Life is not a race. Slow down, you’ll find yourself winning so much more if you spread the love and enjoy the ride.
We’re doing it wrong. Everywhere I look all I see is lamentations about how 2025 has been so bad it makes us look fondly back on the days of a global pandemic. How was quarantine only 5 years ago? We’ve all lived several lifetimes since then.
I want you to be real with yourself right now: take a moment, take a breath, and take an inventory of your body, your mind, your spirit. How are you? I have a guess, and because I love you I’m going to be honest – it isn’t good. I believe that you are stretched too thin, stressed, underfunded, overextended, and under supported (at a minimum!). I’m concerned that your body is overwhelmed by everything you put it through both physically and emotionally. I want better for you. YOU deserve better.
I’m sure this has partially come from spending the past 9 days in the hospital and the struggles I’ve seen families endure, but I’ve also been able to listen to friends and family: what they’re living through, how they’re managing, but never, it seems, how they’re thriving. Our mentality has become just get through it. Life is too short for that. The 5 minutes of peace in the bathroom or 30 minutes soaking in a bathtub are not self-care they’re preventative care against homicide. ACTUAL self-care is not promoted or encouraged in our society so it’s even harder to take care of your needs.
Today I am challenging you to throw it all away. It’s the best thing I could ever wish for you. Throw off the American consumerism, competition with the Jones’s, and endless cycle designed to only benefit the rich.
As someone with limited time left, my perspective has changed so much. In high school I had a yellow legal pad on top of my stack of textbooks with a living To-Do list (typically 2 pages minimum) that I was constantly working on, my calendar had some activity written in every day even during the summer, my days after work never involved me going home – I was always off somewhere volunteering or planning an event. I found my identity in my work, in my productivity, in my accomplishments, but rarely did I find joy in the results of these efforts, merely the dopamine hit of crossing something off.
Becoming terminally ill while at peak workaholic + my recent trips to Europe have shown me the error of my ways. The dichotomy of the European way of life to our daily grind in the US is so stark that it barely feels real. Spoiler: Life is not a competition and you cannot WIN. All of our lives end the same way, so you might as well live for yourself while you have the chance.
In Europe people prioritize relationships, conversation, being present. They have an identity outside of work! They go to the pub or café after work and sit for hours engaged with other humans: no phones to be found! Meals are leisurely and enjoyed without watching the clock. Bad reviews aren’t left because courses took too long, the pace is savored not endured. Portions are appropriate because having extra is considered wasteful and the food is flavorful because it is REAL! It goes bad quickly because it is preservative free, food has depth because it comes from real sources not synthetically created flavors identified numbers. After my recent trip I am convinced, I can taste RED. Why? Because the Allied Chemical Corporation created a synthetic flavor called RED. I’ve said since the 90’s that BLUE is a color, not a flavor but how many blue raspberry things do you see in the world? It’s not natural. It’s not real. What is it doing to your body?
Boiling it down: remove the unnecessary from your life and the remainder is fruitful, fulfilling and wholesome. Remove unnecessary clutter and THINGS: you don’t need a walk-in closet of clothes, you only have one body. You don’t need the new smartphone when it comes out, especially if yours still functions and you aren’t taking your work with you. Create those boundaries to preserve your peace. Remove the fake from your life and your genuine self will thrive. Fake foods, false friends, clothes and appliances made to break and propagate a constant state of consumerism – imagine the weight you’ll lose, money you’ll save, and quality relationships you will foster!
When you dial into the things that matter: family game nights or Friday pizza/movie night create more core memories and a sense of belonging than will never be achieved with the newest, trendy toys. Trips to national parks or Mayan ruins add invaluable perspective in the classroom when learning about key world events.
Not sure where to start? Look at your dog. He finds joy in the simple things, prioritizes quality time, loves affection, and you probably feed him better food than you feed yourself. His life is EPIC with one leash, one collar, a willingness to make genuine friends and an adventurous spirit.
I know this message hits different in the middle of the biggest consumer marathon of the year, but what if it didn’t have to be? Take the money from lots of little gifts and buy the family an experience: trampoline park, indoor skydiving, weekend road trip. Those memories will last longer than the batteries on the Christmas morning toys.
It’s time to prioritize yourself and your peace. Later may never come, don’t count on time that no one is guaranteed. It has to be now.
I can tell that I am dying. Not just in the way that my body continues to ail me and fail me, but in the way I perceive time. Life continues to show me ways that I am in my final chapter.
My 7th grade Ancient History teacher had a sign over the standard issue government clock at the front of our room, written on construction paper and permanent marker that said, “Time is Relative.” I remember so many things about that room, clear as day: the color of the construction paper, the handwritten font, and remember the boy I had a crush on who sat in front of me.
Isn’t it said that when you are young, your perception of time is that everything takes so LONG because relative to your whole life, that three-hour drive to your vacation destination feels like it takes a lifetime? And now, I took a 2 1/2 hour train ride to Wrexham from London that felt like it was 20 minutes. It was barely worth cracking a book open. Once upon a time I thought that older folks are just more patient and therefore not troubled by the length of the journey, but in my current experience I can tell you that for me, time is speeding by. It doesn’t matter if I am sitting still alone on my couch, waiting at the DMV or reading a book, what feels like 10 minutes is actually 90. Several times a day I am astounded by the time because it ticks by faster than I can comprehend anymore. It’s very disorienting but it also makes me feel like I’m racing towards death in the downward slide of the bell curve.
I’ve never comprehended the idea of Zen or Namaste. I’ve studied it and listened as people spoke about it, but a true understanding I was never able to achieve. My life was lived at a breakneck pace and my “importance” evidenced by my full calendar, cell phone exploding with messages, and my long-winded title. I do not operate at those speeds anymore. In fact, I am not physically capable of achieving those things. Gone are the days of multitasking, networking overload or all-nighters running payroll or editing a website. Now my mind struggles to focus on one thought to completion, and my ideas are often lost if I do not write them down immediately. But time? That keeps racing by.
Now, as I roll my wheelchair through life I viscerally feel like I’m breaking waves of consciousness. I realize how corny that sounds, and maybe we can blame the lack of oxygen reaching my brain for some of my abstract thoughts (heaven knows, I sometimes do!) but I have found a peace that I did not know was possible. The anxiety, angst and frustration that used to exude from my pores is a distant memory. I find an inner tranquility as I confront obstacles, inconveniences or bureaucracy that makes me feel dialed in to the energy of the larger universe. Only during these moments does time finally slow down and I believe that is so my soul can bask in the stillness.
Don’t get me wrong, I have plenty to worry about! I have files on my computer with letters to poignant people and institutions from my life, plans for my Wake, lists of achievements or experiences I hope to accomplish before I die… I can worry about my Disability being approved, finding places to live in temperatures that don’t cause physical pain, and the isolation I feel when I’m rendered helpless by coughing attacks. As a lassie that was once known for my improvisation and quick wit, being unable to eek out even a word or two is immensely humbling. Even enjoying a football match at The Turf in Wrexham, an aspiration of mine since I saw the first season of Welcome to Wrexham, I was humbled to find I cannot raise my voice enough to be heard in a bustling pub anymore – once one of my favorite locales.
When I am with my friends and I see their stress, hear their uncomfortable phone calls or witness something go wrong I try to help center them. Show them that in the grander scheme how it is not worth putting your body through the physical anguish endured during this barrage of negativity. I do not yet know if I have a calming effect, but if I can continue to get this message out, hopefully it will help someone.
Our world is smaller than it has ever been. We are plugged in, interconnected, overstimulated and overly (mis)informed. If we get distracted by the cacophony, our lives will pass before we have a chance to be present and enjoy. Again, I am lucky. Unlike those whose lives end abruptly through accident and tragedy, I am given the priceless opportunity to savor my final chapter. Time may be flying but I am aware, present and absorbing every sight, smell, conversation and detail. It’s true what they say that life comes full circle. Those simple things from our youth once again bring childlike wonder and fascination. These are the moments you remember. Not the emails, phone calls, endless meetings or spreadsheets, but the color on an Oriole’s wings, the whiff of baking cinnamon rolls, sound of a crashing wave…
I may be dying, but I finally feel like I understand: Life, love, the grander scheme and the smallest details. I cannot slow it down but I can capture it in my soul where peace prevails.
I have a very vivid memory of January 1, 2009 standing in my cousin’s kitchen when my great Aunt said to me, “Who goes to Hawaii for 4 days?” She was incredulous that I would expend the effort to fly that far for such a short period of time. But my answer, which has fueled many decisions in my life is, “why wouldn’t I?”
You see, I was flying with my bestie Eileen who was a flight attendant. She was attempting to hit all 50 states and knowing how much I hated winter, invited me to be her companion on a Hawaii trip. Since her schedule was so unpredictable, getting 4 whole days off meant the stars aligned and we were going to HAWAII with about 8 days’ notice. I was bursting with anticipation and nervousness, as a planner flying standby is nerve-wracking, but as a frugal filly I couldn’t turn down FREE Airfare to Honolulu! I had always loved to travel and jumped at any chance that was offered, but only recently started taking trips that were bolder than a bus trip to Cincinnati.
Candidly, I remember more from those four whirlwind days than I do from some whole vacations that occurred more recently. We had hoped to snag some first-class seats, but as it was Hawaii in January it was quite full, so we flew in middle seats from Chicago to Honolulu. I wouldn’t trade it for anything.
You see, Eileen looooooves turtles! She has two plush turtles named Ren and Kohl that have been with her on so many adventures since we met in 2005. Hawaii has sea turtles, so we were going to do anything in our power to find some in the wild. I bought us GoOahu cards with tons of included activities, and we made the most of every minute.
As a history lover, I got to see and understand Pearl Harbor in a way that reading about it never could. I had chills during the entire boat trip out to the Memorial. When I look at the pictures, I still get goosebumps remembering how being in the presence of such powerful history made me feel.
We went snorkeling early one morning in a secluded cove and spotted a Sea Turtle in the wild. Actually, Eileen saw it and SCREAMED in joy through her snorkel and I quickly swam over to see it in person. We took an afternoon cruise along the coast and despite the overly abundant seasick passengers, we spotted more turtles swimming at the surface. It was meant to be.
We went to a Luau where we met Kai our tour guide and ate the most delicious pineapple I’ve ever tasted. We learned the hula and ate poi. Eileen, who is a lifelong vegetarian, even tried some of the pork that roasted in the ground. We went surfing which I HATED. I fell off my board into a coral reef that tore off my bikini bottoms and left me bleeding, stranded half naked in the ocean. I ended up hiding behind my board trying to run to shore where they gifted me a pair of commemorative Hawaii shorts to cover my white tushy. But I can honestly say that I’ve tried surfing! And in Hawaii no less.
On the way home, we were stranded in the airport for 9 hours, as every plane to the mainland was full to a person. But the airport was open air and I had a book; there are many worse places to be stranded. And despite getting a redeye from San Francisco back to DC and then having to drive straight to work in Philadelphia, I wouldn’t change it for anything.
I’ve spent my life with one guiding principle when I am unsure of a decision, “will I regret it if I don’t?” I always knew that I am far more likely to regret what I did NOT do, than the things I have. Sitting here even today, if you ask me my regrets the only one that comes quickly to mind is that I did not study abroad in college. The reasons seemed complicated at the time, but in hindsight I should have made it a priority because I believe it would have accelerated my transformation into my true self. It would have given me insights into a bigger world and a more understanding moral compass that took me decades to develop otherwise.
Life truly is a compilation of moments. Sometimes it’s the simple moments and others it’s the scary ones where you get uncomfortable and jump in with both feet, embracing the unknown! It’s cliche because it’s true: you don’t grow if you aren’t uncomfortable. You can’t learn until you look beyond your nose at the people and the world around you. It is possible to think big picture while embracing the small joys. Say YES to that next adventure: the concert, road trip, new food or new friend. Even if you don’t love it, you’ll have tried it and you’ll have more information and a better perspective for the next decision that’s coming your way.
I grew up in a place (Central PA) at a time (80’s and 90’s) where size was important. I spent most of my life worried about my weight, beginning in elementary school as I remember walking the hallways of Stiegel Elementary and hearing the <swish, swish> of the corduroy pants I was wearing when my thighs rubbed together. I remember vividly how jealous I was of anyone in jeans! Oh, denim the miraculous fabric that didn’t announce my arrival or hold onto every speck of lint it found.
I officially got my first pair of jeans from a friend’s mom in the 5th grade. They were stone washed AND had the zippers at the ankles to truly make them “pegged.” I remember what a gift it was to get them from a friend and the Art Teacher, Mrs. Pelsis from Latvia gave me a Penn State sweatshirt for some spirit day at school. Jeans and a sweatshirt? I felt like the coolest kid going in 1991.
By the time I hit puberty, I was so concerned about my physical appearance that my best friend, Chris Wingle and I would spend 4 days a week after school in my living room doing fitness VHS tapes. We alternated Sweating to the Oldies and an ab work video that was hilariously 80’s but intense enough that when we led an ab class in gym the teacher told us it was too much and we had to tame it down. Ya’ll we were doing side crunches, it wasn’t parkour.
I remember saving my lunch money and eating the soup special for 85 cents/day for lunch at school. And it made me feel so special that the costumer would rave how I fit into the storied antique pieces. My mother recently saw a picture of me from those days and said I looked like a waif.
In college, I ate 2 servings of ice cream a day and gained my freshman 15 and felt like the fattest girl in history but honestly, I was healthy. In my 20s I underwent quite the personal development but I definitely spent MONTHS focused on the scales every morning. My first husband and I would weigh in every day and track it on the daily calendar. Looking back, I’m mortified.
I was obsessed with Isagenix in 2009 and became a professional actor in 2010-11. I desperately wanted to be a distance runner, but my orthopedist squashed that after 3 ACL surgeries he told me to temper my expectations on my body.
I look back now on how amazing, strong and adaptable my body was during this time. I am disappointed in myself for still wanting improvement at a time when I was both strong and healthy. But I have those memories, those pictures and those accomplishments.
I am now 43 years old and have had 4 ACL surgeries (3 right, 1 left). I’ve done the math and I gained 20 lbs in the hospital and 50lbs since I left the hospital. It pains me to admit my current weight and my lack of mobility makes it super hard to even fathom a calorie reducing/strength building situation moving forward. I am fatter and heavier than I ever thought I would be.
But in my head- I’m not. It’s legitimately not my fault that my body stopped acquiescing and I can’t move more. My oxygen needs don’t allow it. Yes, I’m sad that I’ve slowed down, but outward physically I do not mind. I use Faecbook flashback to see WHO and WHAT I’ve been and I know it’s real. I’m proud of what I have done. The fact that my body is now much rounder and more sedentary doesn’t phase me. My mind thinks I can still do things that I 100% am not physically capable of, but that’s growth for another day. When I walk into the pool scooting at 0.8mph with my oxygen tank in my Mumu bathing suit- in my head, I’m wearing my 2 piece in a golden tan.
I forget sometimes how big I’ve gotten and I still try to be the playful, flirtatious person I’ve always been. Spoiler- it doesn’t work as well when you’re 100lbs overweight, but it doesn’t matter. I’ve finally gotten to the confidence place in my life where it doesn’t matter. In my head, when I put on an outfit or a bathing suit, the size is not a XXL. In my mind, I am my best self. Inside and out. That might seem silly, but I have no shame and no self consciousness. I am me, I know what the best me is, and if my physical body is no longer able to keep up, that’s ok. I’m going to keep moving forward with the confidence of who I WAS, who I know I am INSIDE and I’m going to ride that confidence.
I’m sorry that when I was 15 I was starving myself as a shy kid who didn’t believe in herself, but her 43 year old self is 100lbs heavier and in the headspace and confidence that I am my best self.
I didn’t take advantage of the benefits of my “culturally amazing body” when it was relevant, but the truth remains even if my body doesn’t. Guess what, friends? I’m dying. I’m no longer worried about my outer appearance. I care about making myself happy in the time I have left, no matter how many chubby rolls are involved.
Two things can be true at the same time. In our current society of combativeness and confrontation, the whataboutisms run rampant, but don’t let that distract you from the facts. I’ve come to embrace this and find comfort in it when I think about it practically. See, it all stems from self-imposed guilt of thinking, “oh, but I didn’t think that before” or “but I used to feel differently.”
Simple Example: when I am driving in my South Jersey coastal community, my eyes are out the window scanning the horizon constantly with a smile on my face just taking in the beauty of the ocean, the humid haze, the wildlife in the bay. From a young age, I have loved the ocean and I’ve seen most of them (I’m skipping the Arctic!). Then I’ll start to feel guilty because I am proudly a PA Dutch Girl from Lancaster County, and farm girl was my label of choice for most of my life. Truly, the farms and fields filled with rows of nature’s bounty are mesmerizing to me, and the lush green fills me with such pride for my roots.
The View from my Front Porch, Parkesburg, PA
But two things can be true at the same time. I can love where I live now and be glad that I grew up where I did. I can feel happy about BOTH of those things. I am not betraying the country because now I live at the beach.
Sea Isle City, NJ View from the Promenade
Another example that’s been ringing in my head/heart lately is my relationship to faire. The Renaissance Faire community has been a FAMILY for me since I was 16, and the lifelong friendships I’ve made are my most prized possessions. But it isn’t the same for me anymore. The things that I loved about it: vocal projection, dialect, history & culture, period appropriateness, improv and adapting that was eked out under the least favorable of circumstances but made brilliant, gritty ART was my inspiration. The improv-ed banter, thoughtful songs and parodies and unexpected collaborations was my lifeblood when I was a young girl looking for her place in the world. It isn’t that for me anymore, as the overall focus has shifted. Do you know what it IS? It IS a safe place that is still welcoming to all. The faire is a beautiful place that welcomes you regardless of your costume, gender identity or unusual hobbies because we are inclusive and accepting in a world that is constantly finding new ways to discriminate against anyone who is different.
Again: both of those things can be true at the same time. The faire was a pillar of my formative years and its reach continues long after I stopped performing that I do not enjoy the same way anymore. AND I can love it for what this place I love continues to provide to this next generation who needs their own safe space to evolve.
The country right now in 2025 is at a Tipping Point and unfortunately, I do not know which way it’s going to tip. What I do know is that “I’m right and therefore you must be wrong,” does not apply in every situation. We can BOTH be right. Black Lives Matter suddenly becomes All Lives Matter. No one is arguing that all lives matter, but it detracts from the purpose of the BLM Movement to get stuck in the semantics. It does not have to be one or the other.
I am far beyond the “let’s not talk about politics or religion so we can all just get along,” phase of my existence. I’m going to tell you about my thoughts on Inclusivity, Women’s Issues, opinions on dying and more that will surely be controversial. I have a lot of BIG thoughts since getting sick and I’ve wanted to write them down so many times, but I’m always worried about how people will perceive me. Guess what? After 10 months of staring down my mortality – I am officially over that fear.
I guess I am hoping that if we start with two things can be true at the same time that is neutral enough of a statement that it won’t cause any tempers to flair. Worry not, there’s more coming.
Today I am asking you to open your mind and your heart. Consider embracing complexity, holding space for multiple truths, honoring your past while living in your present, and shedding fear in order to speak boldly. All I have ever wanted to do is change the world, and I’m asking you to start by changing your perspective.
Growing up, we never celebrated birthdays much. My mom always said that everyone has one, and you didn’t do anything on your birthday worth celebrating, you just showed up. It was your Mama doing the work. As I got older, the timing of my birthday was challenging for dining out or getting away, as it’s Mother’s Day weekend and every 3 years or so, my birthday falls on the holiday proper. Mother’s Day is the #1 busiest day for restaurants- so I don’t go out for my birthday.
But… what is one thing I always say in my videos and posts?? Celebrate everything! It’s never too late to change, and I make the conscious decision daily to find joy in all of life’s experiences. This year, I’m so excited to be celebrated! Some of my friends took my Bucket List to heart and planned me a Downton Abbey themed dinner party for my birthday, complete with costumes, delicious tea and parlor games. I am so excited to be the excuse for some of my favorite people to all come together and enjoy each other’s company!
On the Bucket List train, I decided to identify some of my more attainable objectives and double down on getting them knocked out! This year for my birthday, I’m having a fundraiser to help support these goals. If you have $5 or $10 to contribute towards a limo ride or a bottle of Dom Perignon, I promise to document all adventures as I conquer them! Similarly, if you have any suggestions for unique, “once in a lifetime” type experiences, please share! That’s how I ended up on a Mardi Gras float next year, and I could not be more excited to spread smiles to the enthusiastic celebrators in New Orleans.
If “42” is the meaning of life, then I find it fitting that it was in my 42nd year that I found the peace and fulfillment that I always sought. Unfortunately, that came after a diagnosis of terminal lung disease. I started seeing a therapist in the 8th grade, I continue to see one even now, and the #1 thing they tried to drill into my stubborn Taurus bull brain is, “my value as a human is not related to my productivity.” Never, as I was running several businesses and managing the mental load of both life and logistics, did I think I would find myself finally happy when all of that was removed from my life.
I have been given the BEST gift! I was given my life back with a warning to “use it or lose it” and I’m doing my best to squeeze every last bit of adventure and adulation out of the days I am strong enough to embrace. Unfortunately, with those physical limitations I have lost my ability to work and I’m still in Disability appeal purgatory, so I’m trying to live life while I am able, but I need to fund these Bucket List items. I’ve made peace with certain things, like Raft the Gauley, that I know I will never be able to do, but there are some like see Australia/New Zealand or jump out of an airplane, that I want to stubbornly find a way to achieve.
Yes, it’s May and though I will be celebrating my birthday on the 10th, I aim to have this be the year of my bucket list where I will say YES to things that will move me closer to these once in a lifetime goals. The time has passed for “someday.” Some day is TODAY and if I’m going to get it done while I am strong enough to appreciate it, today means now. In the wise words of Andy Dufresne, “get busy living, or get busy dying.”
I’ve always called myself a professional enabler. I’ve decided that what I can do to pass joy on to the world is to continue to enable you- but in some unexpected ways. It is my hope that I enable you to: remove unnecessary stressors from your life, downsize your material possessions, focus on relationships and experiences, and say YES to the things that scare you. To me, that would be a remarkable legacy that touches people’s lives every day.
If you want to support my Bucket List dreams, GoFundMe or Venmo @Shannon-Jones-4001.
Shannon's Sunflowers 