As I’m looking at what I have on the calendar for the remainder of the year, I am astounded by what lays ahead. Though my first ILD Clinic (Interstitial Lung Disease) is not until December 23, my Pulmonologist has already ordered 4 tests that will help gauge the progress of my disease and be a strong indicator in the viability of a lung transplant. Because of the severity of my diagnosis, insurance has approved the procedures and when I scheduled them all I was flabbergasted to land tests and scans all within 2024. A blessing that the holiday break for most people allows me a fast track to getting all of this preemptive testing done at an unheard of speed.
Since the weather took a cold turn, I’ve been spending most of my time hibernating by my electric fireplace, but I know that I’ll be getting my steps/miles in with the appointments you see in the graphic above all scheduled between December 18 and December 31. As I am working hard to embrace the Holiday spirit (I got my first Christmas tree since 2015) I felt that doing my own holiday tune about the coming pokes and probes seemed apropos. Do NOT say that three times fast. (You DID, Didn’t you? Fess up)
The highlight of the years’ end of course will be the many visits to friends and family that I have lined up from Central PA to South Jersey- with hopefully some Delaware thrown in. I’m already working with friends to schedule meet-ups, formal events, casual gatherings, and kick back affairs in the New Year. I have always loved the anticipation. Anticipation of almost anything can be exciting with the right frame of reference. Looking forward to a parade of faces I haven’t seen in a decade or more sounds like heaven to me. The ultimate Christmas gift.
I will be sure to keep everyone updated as I check these procedures and tests off, maybe even with a few musical bars for old time’s sake. And as always, if the holiday spirit so moves you, I would endlessly appreciate any donations to my GoFundMe which is helping to pay for the medical supplies, prescriptions, gas and tolls of being chronically ill- with the goal of having enough leftover to take some BUCKET LIST level trips.
Now for something entirely different – time to attack my bucket list! Some are super simple, others are over the top crazy, and a handful have probably been knocked out just because I am physically no longer able to. Let this be your daily reminder- Do NOT postpone joy. You never know when you will no longer be able to do something. We’re very naive to think it’ll all be there waiting for us when we’re ready. No one is ever ready, but do the thing! You’ll be glad you did or you’ll have learned something about yourself as you try.
This is what’s left of my bucket list after an already very adventure-filled life. I am looking for people who want to experience any of these things with me. No “eventually” or at a time TBD – let’s talk about it, research it, and get these puppies on the calendar. Just as importantly… what did I miss? What amazing thing did you do that’s so superb, unique or special that you think I should experience it too? Discussions encouraged!
Shannon’s Bucket List of Adventure & Delights
Portray Queen Elizabeth I at PARF
Jump out of an Airplane
Get a Tattoo
Learn & Play Golf
Visit Asia- Thailand, Bali or Fiji
Visit Australia/New Zealand- See Great Barrier Reef
See the Vatican
See/Sail the Mediterranean
Ride in a Helicopter
Ride in a Limo
Fly First Class
See the Savannah Bananas play
Dine in a Michelin Star Restaurant
Raft the Gauley
Go Ziplining
FOODS to TRY: Dom Perignon, Real Truffle, …?
Take a long, scenic train trip
See Elephants in the Wild
See/Hold a Sloth & Kuala
Attend an NFL Game
Have Something Named After Me
Be on a Reality Show or Infomercial
See the Pyramids, Sphinx & Valley of the Kings
See Stone Henge
Visit the Cliffs of Moher
Scotland – Isle of Skye, Giants Causeway, Isle of Islay
Italy: Visit Pompeii, Wine & Olive Oil Tasting, Real Neapolitan Pizza, Learn to make pasta
Have a real crepe in France & Pan au Chocolat
Seychelles
Morocco – Casablanca
Sail the Straight of Gibraltar
Traverse the Panama Canal
Spring Tulips in Netherlands (march – may)
Attend a Downton Abbey level dinner party & dress to impress
Drive the Pacific Northwest- Oregon Coast
St. Augustine, FL
Eat poutine in Canada
Eat at a Soup Dumpling Place
Visit Dollywood & Branson Missouri
Eat Toasted Ravioli w/Dan Mieloch in St Louis
Visit Nicole Hartman in LA
Go back to Catalina Island
Perform One Last Time
Open a Time Capsule
Meet – someone crazy famous?! Sit w/Kenny Chesney on an island (or a boat!)
If I am lucky enough to get a lung transplant, then some of these things like Rafting the Gauley may become viable again because I won’t need to be on 24/7 oxygen anymore. But for the time being, please keep in mind that many of these things will require some accommodation. Now, where do we start?!
Learning About the Volcanic Landscape and Growing Regions of the Azores
And as always, if you want to contribute to help my dreams come true- any donation is so very appreciated! https://gofund.me/30b43d64 If it’s a travel experience, you know I’m getting a great deal so your dollars will be maximized! If you want to go on a fantastic trip at an unbelievable price then you’ll WANT to travel with me!
Undoubtedly the biggest part of my life and the singular thing that has brought me the most joy in my 42 years is performing. I have been blessed that I have run the gamut from community theater to Hollywood set, stunt woman, singer, and improvisational guru.
When I was young I desperately wanted to be a model or an actress, but I was so shy that I could not grow beyond it and let myself shine. As I got older, took classes, and became more secure in myself, I slowly began to develop the skills necessary to show the world what was already in my heart.
I had the opportunity to spend 2 years as a professional actor, performing in Renaissance faires from the Poconos to Florida, and taking part in some awesome and thought-provoking projects: movies, PSA’s for the government, an original Amish musical! As I got older and tried to be more responsible, I always managed to keep performing as a part of my life, even as I was working 80-100 hours a week for the restaurant. The few hours of performing were a respite. A calming of my mind and an enlarging of my heart as I brought happiness and smiles to people of all ages. The people that I have met and the places I have traveled because of performing is truly staggering in hindsight.
What I am having trouble accepting is that this part of my life is over. I cannot sing. I can barely get 3 sentences out before shortness of breath or a coughing fit ensues. I can hardly walk to the bathroom let alone walk across a stage – and I’d be dragging my oxygen all along the way.
I find it staggering upon reflection that I have made peace with dying. That part honestly doesn’t bother me and I’m not scared. What I haven’t been able to do is accept that there are certain things that I love the most that I won’t be able to do again. Even my lofty goal of reviving the podcast (in a new genre and with new topics) have waned as I hear how loud my oxygen is on even a simple phone recording, never mind my coughing fits.
So on this Thanksgiving Eve I am reminded to be grateful. For my friends, my family, my support system, and my experiences. I wouldn’t trade them for anything. They’re mine and they’re what makes me special. But goodness – to transform into someone else, offer a thought-provoking performance or some lighthearted escape for the audience?! That would be MAGIC.
They say that you never know when will be your last. Last big game, last hug from a loved one, last triumphant bow for an audience’s enthusiastic applause. It’s so true. Please cherish it. I sure will.
If you are willing and able to donate to my GoFundMe to help fund the equipment I need to try to live fully for the rest of my days, I would consider it the biggest blessing: https://gofund.me/4b9de27d
If you want to make plans to meet up, have an experience together, maybe go on an adventure or even just schedule a Skype session – please don’t hesitate to reach out. I think we’d both love it. 💜
Sending you Thanksgiving blessings. May you realize how fortunate you are- for relationships, for material comforts, for health. Much love to you all. ~Shannon Maria
I think many people would agree that listening is a lost art. It’s something we all long for: to be heard. By the world, by the people who mean something to us, by our true selves…
An interesting symptom of my current situation means that I am especially well positioned to listen. Thankfully, I adore people, relationships, and effective communication, so being able to listen to the world around me and the people I encounter is truly a gift. Being challenged to be an intentional listener happens to be an unexpected side effect of my physical limitations.
As someone who is as stubborn as I am, often blamed on the fact that I’m a Taurus, listening to myself and my body can be a struggle. Just as I now have no option except to put myself first, my only option if I want to continue with any kind of active life is to listen to and respect my body. In this particular case, I am balancing my joy at being able to travel with my frustration that I am unable to experience new destinations as thoroughly and with the same degree of immersion as I would have hoped.
Striving to embody the adage,” don’t let perfect be the enemy of good,” I am trying to focus on the wins and the accomplishments, even when it’s often easier to see all the ways I am coming up short. I believe a lot of it boils down to expectations. As humans when our expectations are not met, we are so often disappointed. But I have found that as long as my expectation is simply to do my best, and I am too stubborn to do anything less than my best, I have already set myself up for success.
There are many things that I want to do that I am smart enough to realize I cannot do. If I waited for the circumstances or my health to be perfect before I made a go of it, I very well may be waiting for the rest of my life. What I can do is try and be satisfied by any level of achievement. I am being given the opportunity to try and that is more than some people get.
If there was one thing I can offer you in terms of insight, please try. Believe in yourself enough to give it a go. Even if you fail, you now have the benefit of experience. I have found that sometimes failure makes the best stories. In that regard, I suppose failure is in the eye of the beholder because I will often choose a good story over anything else. And now we are right back to listening. So today- I challenge you to TRY. And once you have, it would mean the world to me if I could listen to your story.
It’s been 2 months that I’ve been home from the hospital. I can hardly believe it both because it seems like so little time and yet it feels like it’s been years. The number of changes that have occurred in my life from the moment I walked into the ER, I am still trying to process.
I have known for the last 2 years that my lung capacity has been decreasing, and I was fighting a terrible, chronic cough that would last for hours every morning. I am nothing if not stubborn, but when I was finally convinced to go to the hospital on a Tuesday afternoon in August, not only would my life never be the same, but I would also have a chance to really LIVE and try to make that difference that I’ve always dreamed.
Only since I’ve been out of the hospital and have been able to read my medical records and the reports from the doctors, have I started to grasp the severity of my situation: both of how very sick I was while I was in the ICU and of what my outlook realistically looks like now moving forward. It seems incredibly unlikely that I will ever be able to live without supplemental oxygen again. Things like strolling on the beach or walking the dog are a distant dream, though with any luck, I will at least manage some pulmonary rehab to increase my lung capacity. Things that have brought me the deepest joy in my life: singing, acting, performing… I do not see how I will be able to do any of them ever again. I have no breath support and cannot sustain a note without a coughing fit. On stage no one wants to see me wearing my portable oxygen in all of its noise and cords. I very obviously would not be convincing as any character.
My other great passions are travel and food. I am currently adapting my culinary skills to my new physical limitations because I have not given up on handcrafting excellent meals. Cooking in the restaurant however is definitely over. Open flame and oxygen do not go together. As for travel, I am going to do it as often as I can as long as I can because the first major roadblock that will signify a significant decline in my health is my inability to fly. If my oxygen needs are too great or my lungs aren’t strong enough to manage the pressurization, there is nothing to be done and air travel will cease. I cannot even process how that will affect me. So for now I am going to focus on getting OUT and seeing the world. (Continued after pictures)
15 min After Arriving in the ER. High Flow Oxygen, 45L/min1st Non Hospital Meal in 12 Days. Manco’s from Ocean City In the Ambulance transport, they used a machine to blow into my lungs to get them to expand In the ICU, 1st time out of a Hospital bed in over a week. Made it to the chair Florida in November. The Warm Weather Makes Breathing So Much More Comfortable Flying with Mask & Oxygen. Want to Travel While I am Still Physically Able
I am learning so much from the online communities of people throughout the world who are living with Interstitial Lung Disease (ILD) and Connective Tissue Disease. It is helping me to feel validated in my struggle and keeping me from feeling too lonely. It is, however a cautionary tale when I realize how many members are struggling with very severe depression because this disease is so isolating and limiting. Many patients express that lack of awareness about the disease makes outside individuals seem less likely to be understanding or interested.
As I face these winter months and my anticipated streams of revenue have not come to fruition, I find myself faced with a very daunting task of paying rent, utilities, mobility & oxygen equipment, medicine and trying to attack my bucket list any time I have the energy. I am doing my best to trust the process despite wanting to pull my hair out from all of the government paperwork and all of the rejections in my attempts to get Disability Benefits. You would think that in over two decades of performing, I would be more used to rejection by now, but alas, it is so disheartening even in my typically optimistic state.
I cannot believe I even have to write this, but I need to make it abundantly clear because apparently in this age of misinformation and the speed of gossip I need to clarify the nature of my illness. I have chronic lung and connective tissue diseases brought on because of my genetic autoimmune issues, the first symptoms of which go back to 2008. I did not bring this on myself. The continued rumblings and accusations are honestly soul-crushing when I am facing so many other significant challenges that are real and not invented.
So now is when I swallow my pride and ask you all to help support the next steps in my journey. To help hold me over until disability comes through, I find a remote job that can accommodate my health restrictions, or I finally locate that Nigerian prince with an abundance of Visa gift cards. I am so very thankful to my generous friends for taking the time to put together this GoFundMe. And should you choose to make a donation, I ask that you please send me your address if you are willing because I would love to send you a thank you note. It’s something I started back in Middle School that I have committed to not letting fall by the wayside. I so enjoy sitting down to write a proper letter by hand and who doesn’t love real mail anymore? I will try to be better about posting updates. I find that sometimes if I have too many sad days in a row I do not want to capture them because it is never my intention to bring anyone down. But I’m starting to find the importance of being true to myself, and real friends will not be threatened by that.
Thank you all so much for your words of encouragement, your kind and generous gifts, your stories, your attentive presence, and your support through this struggle.
I am constantly learning. Every day and every experience is still new to me. It’s fabulous for living in the moment, but it also keeps my mind racing as I constantly exist in “problem solving” mode. Problems, you may ask? Simple things like: how far is the walk to the bathroom? Is there an outlet close for my POC (portable oxygen concentrator)? Is there a waterproof chair I can use in the shower so I don’t wear myself out just getting clean to start my day? I dropped something on the ground- is it worth the physical discomfort and lingering shortness of breath to bend over and pick it up or can it remain there for the time being?
My trip to Florida was my first time flying with my POC. Since I can’t be separated from my oxygen, I couldn’t use the body scanners and instead received a thorough pat down as well as a complete explosive check of my wheelchair. The process was very easy from my end and the officer was both polite and patient. Boarding early was a huge help, as it let me get situated without any extraneous standing and allowed me to get the pieces of my POC easily accessible. During the flight, I wore both my O2 and my mask (at the recommendation of my nurse advocate) while watching my battery closely. I was surprised how very dry I became during the flight, and when I tried to turn my POC to a lower setting to save the battery I found myself getting light-headed, so that experiment was short lived. This does make sense though, as when the plane is at cruising altitude, the air is thinner, so I’d need MORE oxygen delivered to stay at my same levels.
My wheelchair was conveniently checked at the gate and waiting for us when we got off the plane in Tampa. The tram ride was an adventure as we couldn’t find the brakes on the wheelchair but after reclaiming our checked bag, we found we had to go BACK on another tram to the rental car counter. Unfortunately, managing the chair, the carry-ons, POC, and the checked bag was far too much for Mama, so I put all of the smaller items on the wheelchair and tried to walk, pushing it myself and using it for support as a walker. In the end, this was not a sustainable method for moving any great distance. Using that “problem solving” I discussed earlier, we rigged up a way for Mama to push me while we jointly wrangled the bags. Seeing our fatigue, the kind man at the rental counter gave us an upgrade to a very comfortable and snazzy SUV.
After a short ride to our friends’ home in Largo, we greeted them and went inside just in time for my POC’s battery to die despite me using the car charger during the 30-minute drive. Thankfully I was now able to plug into the wall outlet, but I felt like that was cutting it too close. The advertised “9 hours” of battery life on the $600 extended battery is running closer to 4. This also became an issue several days later when Mama and I went to the pool for a spell. I found that being in the water allowed me to stretch and move in effortless ways that I have been unable to since my diagnosis. Despite wearing my nasal cannula and propping my concentrator nearby to keep it dry, I physically felt the most normal that I have in months. Realizing that my stress was low and my weightlessness allowed me to relax my breathing, I turned down my O2 flow – again to save battery- but we were both sad to leave when, after a mere 3 1/2 hours, I was down to my last battery bar. Again, it was a race against the clock to get out of the pool, get dressed, secure everything we brought and hobble back to the car before the battery ran out.
Lessons that this trip has taught me so far that I will use frequently: *In order to be at an event or away from home for any length of time, I will require 2 more extended batteries. The four should be able to get me a solid 12-16 hours of “normalcy.” The range is necessary because it changes based on my level of activity. If I am walking, standing, or speaking in long sentences, I must increase my POC’s oxygen output and therefore shorten the battery life. As the point of the POC is to give me as normal a life as possible while I am able, I am typically doing some combination of these things to most thoroughly appreciate each experience. *My typically challenging mornings have been significantly easier since coming to Florida, and the time it takes me to feel “normal” and ready to leave the house has decreased by 60%. Whether this is due to the weather, the temperature, or the propped-up way that I am sleeping remains to be seen. I’ll delve into these variables further in the coming days. *Just because I have a handicapped tag does not mean that there will be any handicap space available. Funny thing about Florida- there is an abundance of senior citizens here and many of them also have handicapped placards. That means there are more of us vying for spaces. Getting dropped off nearest the entrance and waiting for my party saves a lot of energy and prolongs the enjoyment of my time out. *Similar to juggling the four batteries, if I am going to do anything on back-to-back days, I will require an independent charger. Currently the batteries only charge when attached to the POC and the POC is plugged into the wall or a car adapter. This process takes 8 hours. If I had a long day out at faire, for example, I couldn’t go to a concert or food truck festival the next day because I wouldn’t have enough time to charge the adequate number of batteries overnight. This gives me pause when looking at my calendar and my bucket list of things to see/experience.
I’ve only been in Florida for three days so far, but they have been just lovely. The adventure has been enlightening, relaxing, and has offered some welcome reconnections. We are still coming up on the BIG reason for coming south and that will culminate in a weekend of righteous ridiculousness as the Righteous Blackguards play the Lady of the Lakes Renaissance Faire in Tavares, FL. Based on my recollection of the fairegrounds, it will be a litany of challenges between parking and getting to the proper stage. What I walked last year in 4-5 minutes, I am preparing to spend 45+ minutes accomplishing. I will report on my actual progress on my Facebook and Instagram pages over the coming days.
Thank you for following along, and always for offering your own tips and insights on how to cope/adapt.
It has been a rough few weeks. Don’t get me wrong, I have had some amazing experiences and created some fabulous core memories. I am talking about physically, emotionally, and mentally the past few weeks have been very trying.
I was extremely fortunate when I first got home from the hospital, despite my extreme discomfort and shortness of breath, I was not in physical pain. Unfortunately I can no longer say the same. I am in constant back pain and have a headache strong enough to effect everything about 60% of the time. I do not believe I have had a rejuvenative night of sleep since mid-August. Added to that, I can’t seem to nap anymore even when I’m fatigued in the middle of the day.
This is coupled with the fact that the nights are cold and winter is coming. The cold has a significant effect on my breathing, and also can cause my back to seize up. I also know it’s just a matter of time before my Raynaud’s causes significant pain in my hands and feet. I will literally start planning my days around the temperatures and climates that I must endure. That sounds more dramatic than it is, but things like a grocery store, a doctor’s office, or a library – I am always thinking about the temperature inside and what I have to wear to endure outside.
I am doing my best to stay focused on the things that I am looking forward to. That has always been a huge motivator for me, but now that anticipation is heightened as there are many days where I can only manage the energy to do one thing. That one thing is extremely special to me. First up is my long anticipated trip to see the Righteous Blackguards at the Lady of the Lakes Renaissance Faire. Mom and I snagged $99 airfare round trip from Atlantic City, and Spirit has been super easy to work with for my portable oxygen concentrator and checking my wheelchair for free.
I am admittedly very nervous about how I will get from the parking lot to the stage where the Blackguards are performing as the faire is in a beautiful, rustic setting in the woods, so a power chair is out and I do believe it is beyond my capacity to walk of my own accord. But as I see it, I’ve got a week and a half to figure that part out.
The other thing I am most looking forward to is reuniting with dear friends. I have been blessed to have quality time sipping tea and reconnecting with some of the most genuine and authentic humans that I have been fortunate to know, many of which I have not seen in a decade or more. As someone who values human connection so significantly, these reunions have made my heart soar. I sincerely hope that sharing my journey and letting the world know what I am going through currently is an avenue to continue these reunions and bring meaning and joy to my life. If YOU are someone who would love a catch up and porch sitting as much as I, please message me and let’s get something on our calendar so I can ANTICIPATE our reunion!
Had the pleasure today of meeting two rheumatologists who are on my team, and honestly it was such a good experience. Admittedly I feel like It takes a special kind of person to want to become a doctor, and then go into rheumatology. It seems like an underappreciated specialty, one of those things where no one thinks about it until they need it. Compared to some of the other specialties, it definitely isn’t sexy: your body attacking itself.
I learned that as of today, my official diagnosis is: Interstitial Lung Disease with Autoimmune Features. I tested positive for several different autoimmune markers, but don’t have enough symptoms or enough positive tests in any one category to give me a diagnosis of a specific autoimmune disease. I feel like giving me a label that isn’t accurate just to put me in a box doesn’t make sense, so I’m completely comfortable with this. The doctor said some people don’t know how to process having symptoms with no name. I figure, I’m dealing with the mixed bag of symptoms that life gave me, regardless of whether they have an official name. Heck, I’ll probably come up with my own name and it’s not like me to fit into a “box” or “label” anyway.
As expected, they are going to significantly increase my immunosuppressants, and we will be watching for any side effects. From talking to the doctors and listening to the stories from the ILD Community online, some of these medicines have very unpleasant side effects. So before we crank up everything, they want to make sure that my body is strong enough to withstand these new doses. I’ll be taking a pretty thorough personal inventory daily of any new changes and stay in frequent contact with the team at Cooper.
In my opinion, the best thing to come out of today besides a more thorough understanding of what my body is going through is the news that according to my rheumatology team, I would actually be an excellent candidate for a lung transplant. They added several caveats that they are not pulmonologists, so ultimately the timing, need and viability of that is up to the ILD specialists and pulmonologists, but my autoimmune condition does not prohibit me from being a lung transplant recipient. If anything, they felt that my age and overall health otherwise made me a very strong candidate. That is music to my ears! The people whose stories I have followed thus far who have had lung transplants are very pleased with the results and their new lives. Admittedly, the recovery journey appears to be extremely painful but undoubtedly worth it in the end.
So, in a nutshell- a good visit with the doctors, a solid plan moving forward (barring any complications my body throws us due to new meds), and some optimism for long term treatment. I count that as a win- unlike the picture up above that maybe should have been retaken to make me look less insane!
Still Learning My Limitations & Everyday Challenges
There’s so much that I want to write, but I’m afraid that certain topics might chase people away. Ultimately, I decided that sharing my thoughts is more important, and might help more people, then staying quiet and not offending anyone.
I am glad that the disease I have is unique. I am glad that the disease I have is not well understood or documented, so that there is a lot of opportunity for my curious mind to learn and dig. I am glad that my diagnosis is not something like” cancer” or “tumor” when people think they understand what you’re going through. The truth is, some days I don’t understand what I’m going through so I definitely don’t expect you to understand either.
I am a rule follower. Maybe that makes me boring, but it is also a reflection of my greater good mindset. But one thing I have never been good at, is being told that I can’t do something! It’s why I played boy soccer. It’s why I founded the Youth Peace Council at Manheim Central, and why I recolonized tri-Sigma at Gettysburg College. If it was easy, if we were just going along doing what everyone else does, where would be the challenge in that?
I am frustrated. I am frustrated that every day I discover something new that I can no longer do effortlessly. It’s frustrating that I spend so much time and mental labor trying to problem solve to do the simplest of tasks. I am astonished at how underrepresented the needs of people who require supplemental oxygen are in our society. That insurance does not cover oxygen options that allow people to leave their homes comfortably, is mind-boggling to me. Once you get a diagnosis of a condition that requires oxygen, are you also being relegated to your home for the rest of your life?
I, for one, plan on living as much life as I can while I am able to get out of my house. Don’t get me wrong, there are still days where just standing is exhausting. But looking forward to things has always been breathless anticipation for me. Researching travel destinations, the history of locales, and the cultures of new places is immensely fulfilling to me.
I know that technology can only provide so much oxygen in a portable manner, so there will come a time when I am no longer able to get out of my house for any length of time or with anything resembling dexterity. Until then, I intend to make the most of every day and every moment. I vow to cherish them all, and I vow to share them with you. My beautiful sunflowers.
My adventures at the PA Renaissance Faire began in 1987 at the fresh-faced age of 5! My mother and I went every year until 2019. My first job ever was in 1998 when I was 16 and would drive a carload of teenaged wenches to work. I loved EVERY moment of the magic, the camaraderie, the hard work in the heat, the sweat in August and layers in October. There is nothing like the smell of the shire before a faire day when the sun is shining on the shops and the village is alive with energy and anticipation of guests’ arrival.
One of the first people I met during my adventures was Jimmy Amor whom, along with his parents Doc and Patti Amor and his brother Billy Brooks were Blackfryars as a family! They embraced the life so much that Doc let us put up shows in the “black box” above his dental practice and they went on to spend several seasons as the King and Queen at the Pittsburgh Renaissance Festival while both boys became Knights! This picture is with me and the 7-year-old boy who’s fingers I used to smack for stealing my ice from the CLOISTER water cart by the joust in 1998- WAY back in the 1900’s! He is now a husband, a father, a theatre professional and spent a semester at sea- HOW AMAZING!
During my time performing with Chaste Treasure, an acapella singing group where “ladies” sang songs full of innuendo, but mostly bantered with improv goodness, we emplyed a series of “man snacks” who sold our merchandise. Here is a collection of man snacks from 6+ years of performing from Pittsburgh to Florida, New Jersey to the Poconos and online during the pandemic. These unparalleled humans have touted our best qualities in all weather, laced me, acted as Ladies in waiting, and showed up time and again for this woman who was always very trusting of gentlemen who showed respect.
Since my early days at PARF, everyone has a favorite memory of Lord and Lady Bleu! I even have the distinct memory of being on the finale stage when their engagement was finally announced after many, many moons of courtship. In the years since, I have had the pleasure of becoming friends with Cheryl and Brian and have shared many memorable experiences with them over so many locales. Cheryl was also one of the blessed souls who visited me in the hospital. Her and I were a pretty formidable team at Jeopardy and Wheel of Fortune! Arthur Rowan and I started working together in 2010, though I have been an admirer of his work for much longer. He was a fairy hunter in 2010 while I was Mistress Beatrice Quickly, part of the stunt team. I was honored to be in Poe Evermore that year performing, “The Pit and the Pendulum” as a one woman show with Arkansas Bueling as my tech, Arthur as my Director, and I retain to this day that it is the single best acting experience of my life. If I can track down a recording, I will proudly share it. Watching Arthur’s career blossom in Florida, and his family grow with an insanely talented wife and twin boys has been a true pleasure.
I have so many reflections from my visit to the faire- many of which might be better as a diary entry than a blog post, but I mean, if not to share, then WHY?! In the meantime, please know that this experience was a challenge for me because of how very long the day was and juggling the oxygen requirements while making sure I had enough in different forms. I definitely overexerted myself a few times resulting in dizziness and significant tiredness, I did not drink enough water because finding fountains or handicap bathrooms was work, and I should have eaten more but wasn’t willing to commit the time to a food line when I had people to see.
All of that being said, my visit to faire was as close to perfect as possible. I saw SO many beloved humans whom I cherish endlessly. I saw performances by gifted individuals who are thriving in their natural environments. It will take me a few days to recover from the excitement, but I am so very glad that I was blessed with this truly magical experience. Choose Joy, Friends. And BRING JOY wherever you go!
Shannon's Sunflowers 