This is in no way a judgement or commentary on people who are Battling health issues, on their individual treatment journeys or in their Fighting Era. We, in America as a collective, are now so sick that I feel like my feed is full of friends and loved ones who are all dealing with their own particular brand of health scare, terrifying diagnosis or medical mystery. Families’ lives are turned upside down as they’re thrown into the role of Caretaker for aging relatives or ailing loved ones.
I don’t deserve this. So many have expressed their disappointment that I am going to die young, while others (often themselves) have lived a life of regret and questionable morals just to reach a ripe old age. I would contend that objectively, no one “deserves” to die young but I’m also here to tell you that I am LIVING. On strong days or hard days, I am living as much of my life as I am able. I am writing letters, making art, reading books, planning travel, connecting with friends, cooking meals… sure, I’m also going to doctor appointments, therapy, scans, infusions and lung function tests but that’s just my life now. I am not mourning another version. I am not sad, so please do not be sad on my behalf. If you know me you know that all I’d ever want you to be is HAPPY because of me.
I read an excellent article by a Hospice Nurse that essentially said, when I die please put the WHY in the beginning of my obituary so people don’t spend the whole time wondering what happened and she said PLEASE do not say that I lost my battle with anything. With my newfound perspective, these are both entirely relatable. But I offer this:
I am living (and dying) with Lung Disease. As we learn more (shout out to the Second Opinion team of doctors!) it has become clear that Systemic Scleroderma is the root of my issues and it is manifesting as Pulmonary Fibrosis. But I do not wake up in the morning ready to battle. I wake up and might have to negotiate with myself about how much oxygen I need to stand up or which medicines should be taken in which order based on my levels of nausea, congestion, inflammation, coughing, bronchiectasis and wheezing.
FIGHTING, to me, implies violence, over-the-top emotions and struggle. My primary emotion is serenity. I feel far too peaceful to be thinking of battle and based on my wobbled-walk I am definitely not on a Journey. I applaud those who see that they are in the process of metamorphosis. THAT to me is a Journey – learning about yourself and recognizing boundaries, honest communication and personal growth. I am proud of who I have become, the peace that I have found and the unnecessary distractions that I have managed to shed. That is a result of my diagnosis, but I’m not giving the diagnosis the credit.
I like using the hashtag #LungWarrior because Pulmonary Fibrosis is not a well-known or understood disease. Folks might be more familiar with people in wheelchairs or scooters in public but Supplemental Oxygen machines or tanks are not frequently seen. I hope to use my years of Edu-Tainment experience as an opportunity to help people understand the equipment, its functionality and its limitations. I will also advocate against vaping, smoking and for immunizations. If I am able to impact even one person as the catalyst for their healthier life choices, than I’ll consider this experience a success.
In my serenity, regrets have fallen away. Grateful is my primary emotion: for the time I have remaining, the people my illness has brought back into my life, and the experiences I have prioritized.
I don’t know anyone who would argue that life is fair, but I am not begrudging fate. Let us celebrate together the time I have remaining!
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.
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.
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.
I believe that my decline started in February. It was so bitter cold, it hurt to leave the house and I had nothing to do except appeal social security and go to doctor appointments. My pulmonologist referred me to Pulmonary Rehab, but there were no slots available in the classes, so I waited. And my muscles weren’t getting used and my lungs weren’t being challenged. So that set me back compared to how strong and capable I felt when we got home from Mama’s birthday trip where I was using my walker every day, eating clean food, breathing clean air.
Then rehab started and we set goals to lose weight and try to get off oxygen when I am sitting still (watching tv, sunbathing). I started to see how weak my body had gotten when 4 minutes on a recumbent bike was beyond uncomfortable, my breathing was so labored and painful. After a few weeks, I saw myself get noticeably stronger – able to spend 10 minutes on a treadmill, bike, NuStep and arm crank. What I wasn’t prepared for was the volume of oxygen needed to maintain these exercises. Suddenly, even though I’m at 3L(liters) when washing dishes in my home, I need 8L or 10L while walking 2 mph on the treadmill. For those of you unfamiliar with the process, everything in Cardiopulmonary Rehab is monitored. I wear a Pulse Oximeter like a watch and they check my heart rate, oxygen and blood pressure both at the beginning/end and WHILE I’m exercising. If my oxygen numbers are lower than 88, then they increase my oxygen flow until I am back at a safe level.
Then came Spring with pollen like which I have never experienced. Now, I am very lucky in that my allergies are extremely mild and seem to mostly be around hay, so that was only an inconvenience. The amount of pollen in the air however led to a buildup of pollen in my lungs. Around this time my nurses began to hear things in my lungs before exercise: crackles, wheezing, fluid, “the sound of the ocean,” one said. Since those noises directly correlate to my discomfort, I began to have further trouble breathing during exercise and began to cough frequently with a noticeably uptick in my mucous.
After two weeks of this, the Pulmonary Rehab team advised that I ask my doctor for recommendations of treatment, be it a course of prednisone or a medical device to help with mucous. Thankfully, a friend gave me a nebulizer earlier this year, and the rehab folks recommended I try it. What an amazing tool for clearing my lungs! And with minimal discomfort. I was also gifted a very intricate shaker vest that is supposed to shake loose the phlegm but after a half dozen uses, I decided that it was quite abrupt and took up 1/3 of my living room, so I would stick to the nebulizer.
Dr. Lotano, my Pulmonologist sent me for a Chest CT, and I received the results within hours. My lung scarring had progressed to Pulmonary Fibrosis, most significantly in the bases of both lungs, with additional scarring on the upper quadrant of my left lung. Upper right is still going strong, BABY! I was also diagnosed with Bronchiectasis which is basically a never-ending cycle of: scarred lungs make mucous, I try to expel mucous, and whatever is left to irritate the lining will cause more scarring. It’s got a lot in common with The Song That Never Ends.
For the GOOD news: the new diagnosis means that I qualify for another 36 sessions of Pulmonary Rehab. I have already gone through the process and insurance has approved it. So that is a win for both my mental and physical health. The other “potentially” good news (I say it tentatively because I don’t trust the government) is that Pulmonary Fibrosis should qualify me for SSDI as it’s classified as a Compassionate Allowance and will hopefully fast track my appeal. I’m “working” with my local representatives’ office but so far they just made me feel like a nuisance who can’t navigate the system.
The REALITY CHECK is that between the Scleroderma (my autoimmune disease) and Bronchiectasis, my mornings will continue to be a fight with coughing, phlegm and mucous til I make myself sick. I will not be getting off oxygen for the rest of my life. The scarring will continue, and based on how far I progressed from Interstitial Lung Disease to full on Pulmonary Fibrosis, the estimates of 2-4 years is tracking closely with my progress. My oxygen needs will continue to increase and my strength will decrease. I will become dependent entirely on a wheelchair or power chair.
As far as, “how did I even get here?” a few things we DO know: this came on because of a combination of COVID (I had in 12/20 and 12/21 thanks to catering holiday parties) and Scleroderma. I have had symptoms of my autoimmune disease since 2008. COVID being a respiratory illness exacerbated the inflammation in my lungs which began to snowball after I caught a simple cold last August. I will repeat this: this is a combination of environmental and hereditary factors. I did not “make myself sick” unless you count working too much and not taking time to listen to my body. Of that, I am guilty. And that’s mine to make peace with.
The 2-4years can depend on a lot, but one thing for certain- I can’t get sick. You see how a simple cold led to a 3-week hospital stay; another and I could lose much of my remaining lung function. Staying active, being in fresh air, keeping my spirits up- it all plays into healing and strength. Anxiety, depression and isolation are realities that pulmonary patients the world over struggle with. We worry if we can breathe as a constant thought- which makes sense that it would lead to anxiety. We’re isolated because people are uncomfortable around us and all of our equipment, are afraid to get us sick so stay away, or can’t go out because we’re too worn down all of which leads to depression.
I’m going to tackle this thing the way I have achieved most everything in my life: Head On. Based on how I’ve been feeling, what the nurses have been hearing, and what the scans have shown, I feel like I’ve got one more good year in me. Remember, I haven’t yet made it a year since my hospital stay. I love summer more than anything, so I’m going to really push and hope to get two good Go Out With a Bang summers. I’m going to attack my Bucket List and say Yes, And…. to every opportunity that presents itself.
I have so very much more that I want to share with you. My thoughts have been full lately. Expect to see more frequent posts for awhile until I get all of my ideas out. Expect also that I will be changing my tone a bit, as I continue my quest towards being true to myself and not worrying about how other people perceive me. I am aware that may disappoint or even drive away some of you, but ultimately I’m choosing to share my story my way, and I hope that you are ready for the ride.
If you want to help fund my Bucket List dreams, or even just my co-pay for 36 more rehab visits, I’d appreciate your donation more than you know. https://gofund.me/1f9360ab My financial straits are dire, but for such complicated reasons that it will be a post all of its own.
I have heard it said that for all things there is a season. I feel like that is not a concept that is easy to understand as a young person, but in this chapter as I am able to look back, it all seems crystal clear.
There was a time when I would say that certain things were inextricably central to my identity: performing, renaissance faires, singing, entertaining, cooking, working diligently and dutifully long hours in my business hands on. Just typing that filled my soul with feelings of warmth, acceptance and belonging. And yet? Those seasons have passed. The raw truth is that those seasons were ripped from me; those tenants vital to my core being are no longer part of my reality. That is a big, sour pill to swallow.
I think that Taylor Swift made it all more relatable when she defined her life in ERAS. That is somehow far more palatable, and sometimes certain parts of an era make a comeback, so there’s hope for a resurgence of our favorite parts of our history. Looking back now, it is so clear to see each chapter of my life. It doesn’t feel like something is lost, but rather a part of my story. And thanks to technology I am often able to relive some of my greatest memories of these past chapters.
Don’t get me wrong – it is HARD knowing these things that literally defined my existence, I will never do again. But I am still writing the story of my life- there are more chapters to come. Unfortunately, none of us know exactly how many chapters we’ve been allocated, so we must live every chapter fully realizing there is no guarantee that there is writing on the page when we turn it.
Since time is our most valuable commodity, you can tell what’s important in your life right now by what you spend time on. In this phase of my life that is: people, travel and experiences. I have never been one for material things, preferring to taste my memories and share stories of my adventures – both good and bad.
PEOPLE are my lifeblood. Despite becoming more content with a slower pace of life as I age, ultimately, I am still an insatiable extrovert. In this season, that looks quite different than the 6 course, hours long dinner parties I used to throw for my friends – relishing in the camaraderie and conversation. Now it’s gathering with my high school and college friends, performing and work friends, or just those people so ingrained in your history that you cannot remember how your lives intersect. Our gatherings are calmer now, maybe not quieter but slightly less envelope pushing, and still full of life and love.
I find it fascinating that when I look up season in the thesaurus, one of the related suggestions is TWINKLE. Those in my Renaissance Faire community know that the late Doug Kondziolka’s immortal advice to performers the world over was, Twinkle Damnit! I thought my days of twinkling were over when my days of performing ended, but it turns out that my light is twinkling in new ways. Ways that fill my cup and continue to show that my life has an impact on others. That’s all I’ve ever wanted – to change the world. As I’ve aged I realized the best way to do that is one person at a time, which in this current season is the speed at which I operate.
The easiest way to engage with people is to appreciate them! Their struggles, their realities, their victories. I am finding great joy in celebrating other people! I am lucky to have the time now to write letters the old-fashioned way, to share victories and struggles that burden people, and to offer a sympathetic ear in a world that is so raw with emotion that many of us are struggling to find optimism.
I made a video last week offering to write letters to anyone who would like a piece of mail that isn’t junk or a bill. I’ve been greeted by requests from 9 states, some of whom I do not even know! The offer still stands. I’m not asking you to be a pen pal. If you’re life’s too busy and you can’t or don’t want to write back- that’s fine! I just want to send you a smile and maybe a brief moment of peace. You deserve it.
Feel free to send me your address on my Contact page or donate to fund postage on my ongoing GoFundMe. Sending you love and light in this crazy world.
I am absolutely surprised and overwhelmed by how many people compliment my optimism and willingness to fight. They call me an inspiration, which is the highest compliment I could receive, though I don’t always understand what others see. One recurring question I’ve been receiving a lot recently, is how do I deal with my anxiety? I believe that America as a country is experiencing some significant anxiety at present, so you are not alone. I’ve been very open about my struggles which are ongoing, but I am happy to share my experiences and personal insights.
The truth is, I have plenty of times when I am feeling overwhelmed or just very down/sad. I try to take an inventory of my feelings to see if I can identify WHY I am feeling a certain way. Is there an immediate thing needing addressed that’s causing me stress or anxiety? If I can identify it- can I tackle it? If I feel overwhelmed and tackling it feels like too much- what CAN I do? Or can I give myself a deadline? Ok, I don’t want to call the insurance company but I can’t get anything done to address my muscle pain until I get approval. So I have to want pain relief more than I DON’T want to make the call. Eventually the scales will tip and I try to be prepared when that time comes. Sometimes it means writing down the call/appointment/follow up info I need in several places so that when I find an innocuous time or a sudden bout of confidence, I have the information I need wherever I may be.
I also try to immerse myself in something I completely enjoy as a distraction because it gives my body a respite from fight or flight feelings. A show (Downton Abbey, The Good Place) that’s a guilty pleasure because my ex didn’t like it. Painting something. Reading a good book. Cooking a favorite. Looking up plans for a small herb garden… An hour of one of these activities is usually enough to noticeably lessen the anxious dread that sits in my stomach. If the anxiety is sitting in my heart, then a good cry typically helps better. It doesn’t have to be a sad cry… I can usually bring it on by watching videos of soldiers being reunited with their dogs after deployment. Or the Zach & Kelly breakup episode of Saved By the Bell. (Hey, we all have our own things!)
The other important piece of the puzzle is the meds/therapy combination. I consider taking my antidepressants and anxiety meds just as vital as taking my immunosuppressants for my Connective Tissue Disease and my meds & inhalers for my ILD. The meds give my brain the balance they need and my therapist helps me feel heard, even at a time when it feels like being a handicapped woman is like screaming into a void that I matter. The meds/therapist combo reminds my heart and mind that I DO matter, and that any thoughts to the contrary are natural and temporary.
I also take a lot of solace in knowing that I am not alone in my experience. This is all new TO ME but not as a disease. Waking up every morning with such uncontrollable coughing and thick mucus in my lungs that I gag, puke, pee or the winning trifecta of ALL of them! Certain days, even when I have slept ok, I have zero energy to do anything. That I have to mentally gear up to dig deep enough to find the energy to stand up and walk to the bathroom, let alone cook anything more than in the microwave or an air fryer. That I can be doing something simple and basic, but today I can’t do it without severe shortness of breath and significant pain in my chest, back, or extremities. My endless frustration as my nasal cannula and 25ft cord gets so tangled it chokes me, gets stuck in the refrigerator, or I trip on it when walking and barely catch myself as I fall.
Guess what? Every person with this disease has been though these things. I’m not unlucky or doing anything wrong. I am living the same experience as everyone else, it just sucks for all of us. And as much as I believe that misery doesn’t actually love company, it IS wonderful to know that I am not unique in my experiences. What I feel is valid. What I feel is normal. Being frustrated IS normal. It’s ok to be unhappy about the situation that I’m in.
The shortcut answer for how I deal with things that I am really dreading: another Pulmonary Function Test, important test results, calling the frustrating company for any medical or oxygen supplies… is the exact same as when I was tricking myself into riding a rollercoaster or taking the polygraph. I tell myself, “it’s already over.” I picture myself on the other side, I’m looking back and I’m just remembering what happened, not actually living it in real-time. That means that I’ve already survived the discomfort, the thing I’m dreading has actually been conquered. No need to dread something I’ve already triumphed over. That may seem silly, but it’s a mind over matter thing that has been quite successful for me over the past 15 years or so.
I am a work in progress, just like my coping skills. I try to stay present and focus on one thing at a time. It makes me appreciate everything – positive or negative, I appreciate it as something adding value to my life. Thank you for adding value to my life.
Please feel free to share your own Anxiety experiences or coping skills in the Comments.
guilty. And that’s mine to make peace with.
Shannon's Sunflowers 