Tag Archives: survivor

EM

I SEE YOU

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I’ve always had a passion for writing. However, my challenge lies in the fact that my thoughts often scatter, and I may complete only one out of every ten pieces I begin. I have a friend who grapples with constant chaotic thoughts. He finds it difficult to recognize any redeeming qualities within himself. The remarkable thing is, he possesses an unparalleled gift. His ability to put words to paper that evoke all your senses and transport you into the vivid scenes he creates is a talent possessed by few.

He’s been working very hard on himself for the last year or so, giving up things he once thought he wanted, to explore his past, understand who he has become, and discover who he wants to be. He’s utilized advice from friends, his own creativity, a great deal of courage, and therapy to break free from the box that trauma had trapped him in.

I am incredibly proud of him. He acknowledges that he was becoming toxic to himself and those he cared about. Instead of taking the easy route, he summoned the strength to become a better person. His journey is far from over, and he knows it will take years to untangle and overcome behaviors shaped by trauma. But he’s doing it, and I want him to know that, although my life is very busy at the moment & my time is limited… I see you.

He has a deep love for poetry, and so do I. Even though I’m just a small star in the vast galaxy of his talent, I knew that poetry was the language I needed to connect with him. I chose a reverse poem to serve as a reminder of where he once stood and where he stands today. I want him to understand that I see him, I’m proud of him, and I have faith in him. I look forward to watching his ongoing journey toward self-healing and self-awareness.

Read each line from top to bottom. Then read each line from bottom to top.

His life is pain

And he no longer feels

He has the right to hope

Learning from loss

His worth is limited

Refusing to see

Through others’ hearts

Forging his path

In fear & anxiety

Never choosing to walk

With trust & courage

Trudging through chaos

Harnessing his creativity

Binding him from

A life full of joy

For JP, to remind you to always flip the script.

EM

WHEN “THURSDAY” IS “WEDNESDAY”

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Happy Friday friends! You know those days we all have when everything you try to do is an epic fail? My “Thursday” was one of those days!

My husband is enjoying a much needed camping vacation. I started “Thursday” off with completing some promotional work online. I was feeling accomplished after getting it done quickly, efficiently and early! I had nothing I had to do for the rest of the day until an interview at 8pm.

After completing my online work, I went to the refrigerator to grab a drink. The minute I opened the door, I immediately regretted it, the smell was overwhelming. I noticed the milk container lying on its side. When I reached for it, I realized the container was bloated, and couldn’t even stand upright. What had started as a container of whole milk had turned into curds & whey, and Little Miss Muffet was no where to be found!

RIP Frigidaire

I quickly cleared out the entire refrigerator and transferred my Orencia injections into a cooler with ice. I have no way of knowing how long they went without refrigeration. My anxiety grew as I called the pharmacy asking what to do. They told me they could send me replacements, but I would need to cover the cost upfront and wait to see if my insurance would reimburse me. Considering each shot costs $1,436, and I would need three replaced, that amounted to $4308. They were so cavalier about the situation. I got the impression they truly believed I had that kind of money just lying around. But let me refocus and get back to the rest of my chaotic “Thursday”!

Following that, the power suddenly went out and my attempts to reset it were not successful. I was beyond frustrated and I shifted my attention to tending to the animals instead. However, while collecting eggs, several chickens managed to escape their enclosure. Despite corralling most of them, their was one little devil that evaded me. As I approached it with the hope of sending it running back to the enclosure, I slipped and fell hard. I was able to catch myself with my outstretched hand, I felt pain immediately. I found myself in the duck pond, which is basically a mud bog, this time of year.

By this time I contemplated remaining there for the rest of the day. Eventually I managed to extract myself from the mud and hobbled back to the house with my cane. I wanted to get inside and quickly ice my hand and wrist. Then I had another moment of complete exasperation when I remembered the power is still out and I can’t even shower. So there I sat in self pity city, hurting & covered in mud for a good half-hour, until my phone rang and interrupted my pity party for one.

The call was from the social worker where my mom resides, they needed me come in to address some matters. I felt paralyzed. I was covered in mud, and feeling overwhelmed and doubting myself. I do not like these feelings and it flipped a switch in my brain. Just do it. With renewed badassery, I dragged my ass back outside. It took all the tenacity I could muster, but I managed to reset the power and get that mother clucking chicken back to the safety of it’s pen.

I did it.

I went back inside and reassured myself, “you do not have to rush to Mom’s. She’s safe and you can go tomorrow. Treat yourself to a hot shower and some ice cream! Just as I headed for the shower another call came in and I realized it was “Wednesday” not “Thursday”. All of the effort I had put in to my work that morning was wasted time. I had done the wrong days work. I would have to backtrack and edit everything.

Before doing anything else, I shower and ice my injury. My shower re-energized me and the swelling in my hand improved after icing. I was feeling better and no longer worried about a potential trip to the ER. Since realizing it’s “Wednesday” and not “Thursday”, and that I didn’t have an interview in a few hours, I made the decision to go to moms after all, and address her needs.

Upon returning home from moms I felt quite accomplished, but exhausted. I video chatted with some long distance friends and allowed myself to unwind. As time passed, the pain in my wrist and hand became increasingly unbearable. I knew I needed to get it evaluated. Yet, my stubbornness led me to wait until the next morning. What a long agonizing night.

Urgent Care

The next morning, which indeed was the actual “Thursday”, I went straight to urgent care. Diagnosis: fractured and they discovered two previously healed fractures. Now I wait for Ortho referral. They marveled at the pain threshold required to endure two broken bones, without even realizing they were broken! Sadly, most spoonies dealing with painful chronic illnesses unfortunately understand. I carried on with my scheduled interview that evening and then relaxed the rest of my “Thursday”. Looking forward to a fresh start “Friday”!

Now I wait for ortho referral

EM

SUNRISES AND NEW BEGINNINGS

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I’m fortunate to have an incredible support system, but in my darkest moments, I find myself alone. No one else can live in this body with me. Throughout the night, I’m here by myself, surrounded by darkness and pain. I’m sick, and I have to clean up my own vomit. It’s an unsettling reminder of the loneliness I battle despite the support around me.

Today was a challenging day, or rather, yesterday was. I have not slept, and time seems to be merging into a blur. It’s as if I’ve stepped into the Twilight Zone, where time doesn’t matter. However, reality hits, and I know I have to get up, get ready, and drive a teenager to field hockey practice in just two hours. So, yes, time indeed matters.

Despite the obstacles my body is putting in my path, I need to get on with my day and face it with a smile. Adding others to my misery only adds to the situation. I am happiest and more content when those who support me are living their best lives. I watch them view me through rose-tinted lenses, a view I’ve painted by pretending I’m okay. Those living with a chronic illness become skilled performers, some of the best actors and actresses you’ll ever meet. It’s a shame the Academy doesn’t give Spoonie Awards!

Yesterday was a day spent in intense pain. I managed to get up, take my medication, administer my injection, and take my granddaughter to get her ears pierced. I had to stop several times on the way home, the abdominal pain was merciless and unbearable. I contemplated going to the hospital, knowing full well, this was another blockage. Yet the thought of another exhausting and humiliating medical experience leaves me less than inclined to go. So, I suffer through the torment alone.

The several stops I made during my thirty-minute ride home, seemed futile. The Scleroderma dragon had awakened, wreaking havoc on my GI track’s ability to function. By now, it’s clear it’s another blockage. But did I go to the hospital? No, I did not. The thought of compounding my pain, stress, and overall agony by placing myself in a position to be judged by medical personnel who often treat me like a drug seeker, or time waster deterred me.

Then, having them humiliate me by being completely ignorant about it, like they’re teaching me a lesson or something.

“I’ve had far to many negative patient experiences to just, “go to the er”.

Advocating for myself isn’t new to me, but it’s an exhausting endeavor. The energy it takes to request they talk to my doctor or read through my chart before reentering my room is beyond me. Eventually, when they decide to heed my request, their demeanor shifts. Suddenly skepticism is replaced by compassion and belief. Now I’m declining multiple pain medications they initially assumed I was seeking. The irony is painful.

I shouldn’t have to endure humiliation before I’m treated humanely. So no, I did not go to the hospital. I returned home to suffer.

Within an hour of getting home, I began vomiting. Thankfully, my GI track decided to tediously do its job, and the pain did ease somewhat. The rest of the day, I continued to vomit and managed to navigate my sluggish intestines. Unfortunately, the vomiting triggered my reflux, and the dull headache from the Orencia injection kicked in around the same time. It was officially a full-on flare-up in this stubborn body.

Still, I did take my granddaughter for her piercing and her smiles added light to a dark day. My husband is on a camping trip, so I had to feed the animals and complete a few other necessary chores around the homestead. I even managed to get some online work done. Late evening rolled in, and I chatted with a group of friends online and cracked jokes. I don’t think anyone had an inkling of where I was physically or emotionally. Which I’m fine with because it gave me an escape from my current reality.

I’m writing this at 5 a.m. on Tuesday, as I start to see the light break through the night. I have come to the realization that this illness has taken something else from me, the joy and beauty in watching the sunrise. Because for me, sunrise means I haven’t slept again, the night is over, and people and animals are counting on me to do what I do. I fight, and I live my best life as painful, lonely, and difficult as it is sometimes. Because I know I only get this one life, and I want my legacy to be the joy I had for family, friends, and life. I absolutely do not want it to be, “She was always sick”.

“I’m doing everything in my power to be the person I want them to remember.”

One day this week, I’m going to plan a day to intentionally experience a sunrise. I want to truly absorb the beauty, and marvel at the miracle of life and new beginnings. I am tired of this disease constantly robbing me of experiences, I refuse to let it take another thing without putting up a fierce fight!

Huge shoutout to all who suffer in the darkness. Battle on, my fellow badass warriors.

I felt inspired…there you go JP, a Haiku.
EM

“LET’S TRY THIS”

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Those who know me well recognize that the length of time that has passed since my last blog post hints that my health hasn’t been great.

“In the fiery crucible of battling an incurable illness, she fearlessly harnesses the darkness, transforming it into fuel and igniting an unyielding spirit that blazes through life with an unwavering light that no healthy soul could ever hope to match.”

~Em Farwell

These past several months have been challenging. Trying to strike a balance between improving my quality of life, managing my symptoms, and dealing with disappointing test results has become an unexpected labyrinth that is stealing minutes from my life. Adjusting to medication changes has always been challenging for me, and it keeps adding to the torment.

It began when I contracted COVID back in December. The on-call doctor held back some of my medications while I was taking Paxlovid, but unfortunately, he didn’t withhold all the necessary ones, and it wreaked havoc on my lab results. Since then, it’s been a constant “let’s try this” game with my treatment plan, leaving me struggling with constantly changing side effects. It feels like I’m stuck on a hamster wheel; when one test improves, another one plummets.

During this time, I’ve had to tolerate changes in my medications and dosages, endure periods of isolation, watch my hair fall out, and witness my eyesight continue to decline. Adding to this jigsaw puzzle of torture, due to my medications & Sjögren’s, in just 6 months I went from having no cavities to having more than 10 cavities that I can’t afford to fix. It feels like an endless cycle of setbacks and obstacles that I am continuously struggling to overcome. All these physical changes and the thought of future ones (losing my hair, teeth, eyesight, etc.) take a huge toll on my mental health. I’m exhausted.

I am very grateful for my medical team. They’re putting in a major effort to help me through this time and to find solutions to improve my quality of life. Lately, I’ve started hearing phrases like “Hail Mary”, “last ditch effort”, “worth a shot,” and “running out of options” from my doctors, which leaves me with a sense of uncertainty.

The latest “out of the box” effort is to try biological therapy. The original thought was infusions; however, that would mean another monthly trip to Boston, which is 2 1/2 hours from my home. Instead, I will be giving myself weekly injections.

“with a biologic in the class of biologics known as selective costimulation modulators to target the cause of your inflammation and reduce the activity of your immune system”

I began the biologic last week. Thankfully, I’ve only experienced mild side effects. I did have bruising and tenderness at the injection site, along with chills after the injection and a lingering dull headache. Throughout the week, I’ve felt out of sorts, but I’m prepared to fight through adjusting to a new medication.

Finding balance and knowing if a medication is working for me can take months. Despite struggling with the thought of self-injecting, I keep reminding myself that I’m doing it with the hope that this will improve my current situation and lead to better days ahead!

Today was Week 2 of therapy. The actual process wasn’t any easier. I still hesitated and had to run through a whole gymnastic routine mentally before actually injecting the medication. But I did it, and I’m choosing to have faith in a positive outcome. I may be exhausted, but no one should be so brazen as to dare count me out!

EM

LOOK TO THE ENDGAME

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I do not cower to opposing views. I am not afraid of challenging my thoughts on different matters. What concerns me is the possibility of becoming close-minded and living in an echo chamber surrounded only by people who agree with me. It would be a stagnant and ignorant existence. Not conducive to personal growth or learning. It is crucial to surround myself with different people and ideas, even if it’s uncomfortable. Engaging people with opposing views can broaden my perspective and deepen my understanding.

You’re under no obligation to like everyone, forgive anyone, or tolerate hatred. Listening to opposing views is evidence of my desire for actual change on the topic. Finding common ground is essential for real, long-term change. As human beings, we all have thoughts and ideas shaped by our experiences and history. By listening, we can learn what’s in a person’s heart and get to why a person holds a particular view. Even if we cannot agree with their views, we can try to understand and see how they arrived at this opinion. Only then can we find a way to meet them where they are and attempt to make them understand our perspective. Or perhaps, we will discover that we are now unsure about our views and that it’s us who need to grow and change.

Don’t be afraid to challenge your views. The real weakness lies in being unwilling to listen. Every generation grows old and the young will challenge their views in the name of progress. Don’t get left behind because of pride. When you have a conversation with someone who has opposing views, listen, be patient, and be kind. No one has ever been insulted into an agreement. We can use what we learned to be the root of their views and take steps to change their perspective or, at the very least, find common ground to move forward on.

It is important to educate ourselves to understand why people believe what they do. The ultimate goal is to come together and solve problems. We often find that our end goal has some semblance of common ground if we listen. We can either dismiss hateful views and tell them to shove them up their ass, or we can make an effort to understand the reasons behind them and stop it at the cause.

I am not saying, we should tolerate hatred. I’m suggesting the solution isn’t to hate back. Rather, to put an end to it, we need to comprehend it. Once we grasp the reasons behind it, we can make a plan to educate others and work towards a solution. Resolving significant issues takes time, support, and education. Real change comes in the seeds we sow for the next generation. The truth is we may be banging our heads against a wall, with some people. But our efforts can impact future generations, and maybe they’ll embrace love over hate.

Love Not Hate

When it comes to dealing with hatred, our focus is often on the victim. We tell them to toughen up, ignore the negativity, and build self-esteem. This puts the responsibility on the victims to adapt and fit in better. Why not redirect our energy toward understanding what creates the hate? With this knowledge, we could create change at the roots & prevent it from happening. It seems more compassionate to support the victims and put those who hate, to work on becoming better people.

This is my chosen approach and I apply this to any issue where there are strong opposing views. I focus on the problem, get to the root, and hopefully find a solution. All while supporting the victims and growing, changing, and educating myself as well. Every one of us can play a part in making the world a better place if we would only listen. Look to the end game.

EM

DON’T INVITE THE BEARS

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Handling toxic situations can be challenging, and if we don’t approach them differently, we are setting ourselves up for failure. We will be doomed to live like salmon swimming upstream, expending energy and effort, only to make a few inches of progress. The difference is, the salmon don’t invite the bears to disrupt their momentum, to push them back to the starting line, or to pick them and their friends off one by one and eat them for lunch. Every time we allow a toxic person to disrupt our lives and force us to start again, it’s like inviting those bears to lunch.

Don’t invite the bears!

While toxic people are responsible for their actions, we are also responsible for what we allow in our lives. Although it’s understandable to accept apologies, if we continue to allow toxic people to stay and wait for them to change, it will poison the whole stream and cause innocent people to suffer. We bear some responsibility for the harm it brings to our journey. While the intentions are good, and some people love deeply and want everyone to be happy and thriving, continually living with toxicity while hoping things will change will never bring peace.

Everyone handles personal boundaries differently. Some have no boundaries and take on the burden again and again, some allow those lines to blur depending on the person crossing them, and some fiercely enforce their boundaries and protect their peace. There are even people who invite the bear to lunch, and we’ve all had toxic people slip through our radar. In these moments, it’s often not the toxic person paying the price and being given a chance to grow and learn, it’s innocent people, good people, suffering again and again. We have to see these moments as opportunities to learn and strengthen our boundaries.

Not everyone who is toxic is evil or cold-hearted; many believe they are coming from a place of love. Often, it’s a learned behavior or a response to trauma. We’ve all exhibited toxic behavior at some point in our lives, but the difference is, we learned from our failures and grew from the experience. We must be willing to force the hand of those who are harming themselves and others, even if it means letting them go to create space for growth. Sometimes it’s necessary to break the toxic cycle and prevent them from stealing joy and energy from those around them. As a friend, I won’t blindly support everything you say you want on this journey. I’ll always meet you where you’re at, but I expect the same in return. It’s essential to expect what someone is capable of and not accept anything less. We must love someone enough to challenge them and push them to grow, even if it’s uncomfortable in the moment.

If you want a friend who won’t be honest when you’re hurting yourself, me, or others, I’m not her. But if you want a friend who will fiercely support all of your efforts to become the person you want to be, sign me up.

THRIVE TO SURVIVE

THRIVE TO SURVIVE #1: AN INTERVIEW WITH RENEE YAWORSKY

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Hello all! Welcome to the first installment of Thrive To Survive! This is a very special blog/interview series where I, Jon Phipps, will sit down with some of my closest contemporaries to discuss with them how they overcame various physical & mental hurdles in their journey, or overcame obstacles outside of that realm! I couldn’t have picked a better guest of honor for this maiden voyage of TTS…….I had the thrill of sitting down and chatting with my best friend and closest co-creator, the inimitable Renee Yaworsky!

Renee is the embodiment of the words strength, kindness, fearlessness, love, compassion, friendship, beauty, care and inspiration. A native of New York and a long-time resident of the Peach State of Georgia, Renee has been involved with many different things over the span of her life, including law and prison work, modeling, acting, being a singer/songwriter, poet and novelist-all while valiantly and bravely battling health issues, namely lupus and seizures. Says Renee of first finding out about and subsequently tackling these issues in her life:

“I was 18, I was on Grady Avenue in Athens, Georgia and had a typical Athens night. We were swimming, and doing band rehearsal and was up most of the night and really having a great time, and when we fell asleep in the morning after being up all night, I did not wake up. And so luckily, one of my friends who was there tried to wake me up and was confused that he couldn’t, so he called my other friend and got on the phone with 911, and my other friend, my girl-friend was there with me and they were able to wake me up. The paramedics told me my heart had stopped and that they were gonna take me to the hospital. I said, I don’t want to go to the hospital and they said, well we’re taking you anyways. So they took me to St. Mary’s and determined that was the beginning of the understanding of the fact that I was going to have something going on with me, and I didn’t realize what it was. In fact, the initial doctors were reticent to call it a seizure.…….And then I came back up to New York and I was lucky, I was able to be seen by a cardiologist, a very, very good one, and he checked out my heart. And then I started seeing neurologists back in Georgia and they just, you know, called it seizures. At some point, they started saying seizures because they gave me EGS tests, and I was showing seizure activity. But actually after that moment, I didn’t have that many Grand Mal seizures. The Grand Mal seizures is like that when you’re losing consciousness. I’ve only had about two of those, maybe three In my entire life. Typically, my seizures that I had for the next six years, which I had almost every minute of every day were Complex Partial, I think they’re called. It’s been a long time, so some of my terminology might be wrong, but I was medicated and the medicine I don’t remember ever helping that much. I essentially had seizure activity 24 hours a day for about 6.5 years and that limited my ability. Even though I wasn’t losing consciousness, it affected my sense of self, the way I saw the world, what I was able to do, what I was not able to do. I sometimes would have to stay home because the lights outside could make it worse, fluorescent lights made it worse, sunlight could make it worse, But I didn’t get a lupus diagnosis until about 12 years later, and that’s disappointing because I had all of the symptoms. But for whatever reason, even though I was under a neurologist’s care, they never connected those dots.”

Despite the darkness and uncertainty, Renee nevertheless found a cure for the seizures she was suffering, and it was nothing short of a miracle. Renee portrays the scene when she found this miracle cure:

“It must have been 2005. I had trouble traveling, although I tried to travel as much as I could. I often was canceling trips because if the seizure activity was particularly bad, I wouldn’t even be able to leave the house. In 2005, my mother wanted me to come up for part of the summer, and I was able to make it up there. And when we got there, she mentioned that there was a shrine to St. René Goupil, which was not close, but in Upstate New York. It would have been a day trip. And I said, ‘that’s so weird because my name is Renee!’ I said, ‘how did I not know? I’m a Catholic! How did I not know that? I had a saint named after me that has a shrine right near where I grew up!’ She said, “I don’t know.” And we went there, and we toured the grounds, and it’s a lovely, lovely place. It’s out where the Mohawks were. There’s a lot of Native American history there, and a lot of museums, and it’s beautiful countryside.

I was having my general seizure activities, and the sun used to really adversely affect me. That’s a symptom of lupus, and it also can make certain seizures worse if you have that photosensitivity. And it was a hot day. And she went back to the parking lot and I said, “well, I’m gonna linger down near the river a little longer.” I had no plans, no hopes, nothing. I was just by myself and I for some reason bent down and put my hand in the water of the stream, a tributary from the river, which is where the body of St. René had been martyred. And it was once, it was maybe 3 seconds. I just put my hand in the water and I blessed my forehead and I said, “St. René, take away my seizures.” And I had never prayed for my seizures to leave me. I had never given them any conscious thought. I tried to ignore them. And instantly, my seizures were gone. The whole world looked different. The sun was different. And it was just…..gone. And I walked back up to the car, I didn’t mention it to my mother, but I knew I was totally cured and I never once had another seizure. I went off of medicine, I went to law school, my whole life totally changed.“



As mentioned before, Renee has been involved with many different things, but one of her foremost passions earlier in her life was acting. Having taken acting classes at various points since the age of 2, she developed a brawny love of the stage, but a very serious incident made her steer away from acting. Renee recounts this event:

“I’ve been acting my whole life, but I always stayed away from screen because I felt it would be safer, and I love theater. I love the stomps on the stage, I love seeing the audience, I love memorizing the lines and I became a stage actress and that seemed safer to me. Fast forward to about 2007 or 2008, I was in with the acting troupe in Athens, Georgia, and they had a mass shooting there at a function that I was supposed to be at, that I overslept. That was when I made the decision to go to law school and to not continue my acting. So if you fast forward till now, you might understand when people who don’t know me when people who don’t know me think I’m looking for attention, or, “oh, you think you’re so beautiful, you want people to look at you,” they don’t understand how much of my life was spent trying to get people to stop looking at me and for various reasons, and when the mass murder happened, it was very, very intimate and very close, both in proximity to where I literally, physically was and then also emotionally where I was. I did not want anything to do with entertainment again. I only came back to entertainment at all in 2020 during quarantine, but sure that I was going to focus on writing and law, and I absolutely did not want to go back into modeling. I did not want to go back into any sort of public activism and certainly not anything entertainment, nothing with acting, nothing with music.”

Nonetheless, Renee powered forward and dove headlong back into the creative realms of acting, modeling, music and writing. As mentioned before, acting & especially modeling are just one part of Renee’s MO. Through her work in these fields, she inspires and encourages scores of others to find their inner & outer beauty and embrace it, not just for one time only, but throughout the rest of their lives. And Renee is truly a shining beacon of hope for those looking for inspiration, or for those just on a journey to love themselves and accept themselves for who they truly are, not for what society wants them to be. Renee herself talks about the long road it took to overcoming food addictions and to love the skin you’re in, no matter how long it may take:

“I never had an eating disorder, but when I had a fainting spell in my teen years, I was grossly underweight and I did spend many years of my childhood with doctors, you know, monitoring me for bulimia or anorexia. That’s not what was happening. I was eating everything in sight when I was free, but I was highly active and I had a bit of an insecurity about being so underweight. When I was hospitalized for the fainting spell, I weighed 94 lbs. It was quite shocking that that’s why I was hospitalized. There was concern about that, but it wasn’t deliberate. In fact, I would buy these powders and stuff and try to gain weight. It’s what I really wanted. But I was riding horses competitively, so I was active. I was also playing basketball, I was playing tennis, and then I was in a touring rock band while at the same time as starting college at age 16, and I was also running an N.G.O. I ran a nonprofit that I started. I was doing all of that and I was so young, and I just loved it. My mother was so concerned about me because she said, “you’re not eating, you’re not sleeping.” And I’m like, ‘yeah, but I’m so happy.'”

With the modeling & acting work, plus current music endeavors and past activism considered, Renee is no stranger to being in the spotlight. And while this has been a mostly pleasant experience for her, Renee, like any other who is consistently in the limelight, has had to deal with more than her share of catty comments, hurtful messages, situations gone awry, and in some cases, even stalkers and people spying on her. Renee describes what this is like, and what she has done to overcome it:

“It’s disappointing, certainly, because I do havefearful things that I wouldn’t have otherwise. I would say that I was exposed to it early, to the point where now I don’t know any other way. I started my my anti death penalty work when I was 14. And the band I was in became really popular when I was about 15, and so between prisoner issues, prisoners or people from the activist world who maybe didn’t agree with me between that, and then the fans for the band……..I was a drummer. I was the drummer, but I was the only girl. So although I was not getting the level of attention that the front man was getting, I was getting the boy attention because I was the girl. And this is certainly pre social media, but the internet existed. I think we had AOL chatrooms, it wasn’t like what it was now, and it never occurred to me that that could exist. The technology wasn’t popular. So when I was 14 starting this, this anti death penalty work, it never occurred to me that I would be able to be tracked down or my family would be able to be tracked down by prisoners or families of victims or families of prisoners or gangs, it never occurred to me because the internet didn’t exist like that. We were primarily still doing things over snail mail. I created an alias, I had a a pseudonym and I had an activist alias, and I felt like that would be enough. I had no idea what was coming in the years to come with that. Now anybody can find anything. The rock and roll business of it was a little different. I felt very safe because most of our fans of course were like teenage boys our age. I remember our school would have events, we had interviews coming out in the papers and they would put us outside and we would autograph everybody’s copy and things like that. Certainly, there was a lot of attention on the band, but again, because there wasn’t social media and all that. One of the funny things that would happen is many times the band and I would be out in normal places, the mall or a carnival and we would see fans wearing our t-shirts and they wouldn’t recognize us because they had never been to a show, They heard our cassette tape or something, they were fans of ours, but they didn’t know what we looked like. There were fans that came to my house, there were fans that came to my mother’s place of work. There were fans that called us at all hours of the day and night, but they tended to be well meaning and I didn’t fear them, but it did make me very cautious.”

To say life for Renee has been ridges and valleys would be an understatement. But through it all, she has never lost her smile, her passion, her drive, and her compassion and love and kindness toward others. She is someone we all aspire to have as a friend and a cheerleader in our lives. I speak for myself when I say that having the gift of Renee’s friendship has benefitted me and change my life in ways I’m sure I don’t yet know. Add to that the fact that we both have a common goal for ourselves in terms of paths forward and creative ideas, and it’s a friendship that is rivaled by few and duplicated by none. Renee is the definition of taking the high road. When asked about how she would like to be remembered when her times comes, she said:

“I would like to be remembered as somebody who truly showed that you can suffer in your life, and shine a light instead of bringing more darkness into this world, and to be known as a bridge builder and a peacemaker. I think peacemaking and bridge building are things that came naturally to me because I have a duality in my nature. I’m that textbook Gemini, I really do see things from different points of view. When somebody is arguing with me, I always see it from their point of view. I can see it from their point of view as they’re describing to me how unhappy they are with me, and I can jump aboard. I really see things from both points of view. And when you do that, you become a diplomat, you become a leader, a coordinator and organizer. And at the end of the day, you’re becoming a peacemaker. You’re sitting down with someone who might have done something horrible to another human being and you’re finding some common ground there with those people. And that to me is the most important thing, because if we don’t have peace, we don’t have freedom. And if we don’t have freedom, we can’t have happiness. More than 51% of my time as an adolescent teenager and young adult were spent listening to older people talk about their journeys, telling me things and I got to sift through what I believed in, what I didn’t believe. But I was listening. I was acquiring that knowledge. I don’t always have an opinion, and that’s the part of peacemaking, when you’re constantly jumping to conclusions without all the data, you’re constantly, stubbornly clinging to what you believe is fact. Even when different facts are presented to you, with that type of rigid personality, it’s very hard to progress, and it’s very hard to build peace because the more that you’re segregating people and telling them how different they are and how horrible one side is and how great the other side is, all you’re doing is limiting truth and you’re you’re not allowing the person you disagree with to ever progress in their own journey. So hopefully, I will be remembered as a peacemaker. You can’t make everyone happy all the time, but at least that’s my ambition, and I think that’s what I was doing even at nine years old with my animal rights. I was trying to build peace even back then. I think that’s been the theme of my life.”

I want to thank Renee for taking some time from her busy schedule to sit down with me and be interviewed, and I want to thank you, the reader for taking some time from your busy schedule to read this first installment of Thrive To Survive through to the end! without you, none of this is possible! Thank you all again, and until next time, take care, much love and may God richly bless!

-Jon

EM

I CHOOSE

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My body has spent the last 2 decades trying to break me. Every day it takes something else away. I didn’t think there was much left to take away. I was wrong.

My job is to stay alive until the medicine & research catch up.

I put in a lot of effort to live. I know that sounds foreign to anyone healthy, but it’s true. Every day with a chronic illness is spent staying alive. My body throws one obstacle after another in my path. In November, I learned that it will take multiple procedures to save my teeth & jaw. It’s been difficult to process this & gather the strength to face it head-on. Then Covid hit me like the sky was falling. I was so sick and my first oral surgery had to be canceled.

At the same time, my meds & treatments caught up to me & I started losing my hair. Within a very short time, we had to cut it, & eventually shave it completely. I know it’ll grow back, but damn, enough is enough. It’s not vanity that leads someone to the breaking point when they lose their hair. It’s another choice stolen, by illness. It may seem silly but yes, losing the ability to choose your hairstyle is a big deal. I was still very sick at this point, with Covid & we ended up postponing our holiday festivities. Losing my hair at the same time was extra cruel. It was one more kick in the gut from an ugly disease. 

A few days later, my quarantine ended and I went for my routine labs. My rheumatologist called later in the day, to tell me that I needed to stop one of my medications immediately. I was on the verge of liver failure. What are the chances that out of all my medications & treatments, I’d need to stop the one medication that made a huge difference in my quality of life? I reluctantly stopped it after speaking to my doctor. In just a few weeks, I’ve noticed negative changes in my body. I’m hoping my labs improve and I can resume the medication soon. 

So here I am my teeth & jaw at risk, with a bald head, and on the verge of liver failure, still trying to schedule time with family for Christmas. Yet, I am still not letting my physical problems terrorize my peace. I was feeling pretty positive earlier this week when I went for my normal urology tests and follow-up. Easy peasy routine visit. I should’ve known better. If you follow my blog you know that my urologist has wanted to put in a permanent catheter port for my bladder. I fought it as long as I could. Last year I agreed to do it, but I never scheduled the surgery. Now I have no choice it has to be done soon. I will have my mic-key port in my stomach & now I’ll have a catheter port in my bladder. Having one of these ports is difficult, but two ports on top of everything else is overwhelming.

I’m not sure how anyone else would handle all of this, but it pisses me off. I refuse to give in to my body. Unfortunately, my body continues to fight back. One would think this would break me, but they’d be wrong. I get frustrated and angry, then I fight even harder. I refuse to feel defeated. I get one damn life, this is it, I have to live with what I’ve been given! When you’re living with an incurable disease your only goal is to stop progression & maintain your quality of life. Just because your disease can’t be cured doesn’t mean you can’t live a full life. I focus on the things I love, the joy in the world & the positive possibilities of what the future might bring. I want a long happy life just like everyone else. None of us know when death will take us. That is a fact we all live with until our last breath.

I’m nothing special. I don’t do all these things because I’m strong or courageous. I do these things because I HAVE NO CHOICE. I do them or I die. I’m not alone in this lifestyle. It is with mixed emotions I watch several people close to me go through similar trials. It’s heartbreaking to know they’re suffering, but there’s something comforting in knowing I’m not alone. Someone else gets “it”. 

If you’re in a health battle my advice is to build your team, your circle, your tribe whatever you choose to call it, a strong support system is imperative. I’m so grateful to have family, friends & a medical team who are there working side by side with me. They carry me when I haven’t the energy, they push me when I’m unsure I can give anymore, & they let me be when I need time to process all of it, they are never out of reach. My tribe doesn’t judge me, I can laugh or cry and they’ll be there. They aren’t afraid to give me a kick in the ass when I need a reality check or if my pity party has gone on too long. 

I know my body will continue to fight me with every minute of my life. It better be prepared because I do not back down, I do not give up & no matter how many battles I lose, I will continue to fight. I will fight for every minute I can get. I’m always saying, I’m going to live to be 124yo. Stay tuned to see how close I get 😉

Despite it all, I refuse to bow out, give in, or become miserable. As my good friend TC says, “I choose awesome!”

I choose to be happy. I choose to survive.

I choose!
EM

JUST DON’T

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It’s that moment in a social situation when things get awkward. When the person you’re talking to starts squirming & fumbling for words. They are struggling to keep the conversation going. That moment when people are at a loss for words. I realize my illness, my pain, my wheelchair & dozens of other chronic illness-related issues, I live with make “them” uncomfortable. If I’m being honest, saying the wrong thing happens a lot.

These are innocent, benign comments from people with no malicious intent. Many times they think it’s funny and yet they’re completely serious. Sometimes I can shrug it off or laugh it off. Other times, my bitch switch is flipped and it’s on. I’m ready to completely obliterate someone in anger and frustration. Faster than you would think, anger turns to frustration, and frustration turns to pain. Before you know it, I’m launching headfirst into the abyss that leads me down the dark road to depression.

“You’re so lucky you don’t have to work.”

“I wish I could stay home all day, like you.”

When you want to say it, just don’t.

I hear this often. Each time my mind’s eye suddenly sees my day in what it perceives, they think I do all day. There I am on a lavish sofa, the sun gleaming through the windows, making me appear like a starlet under the glow of the spotlight. I have snacks to the left of me, a controller to my right, and I’m snug in the middle with… Netflix. My dogs are at the table playing poker with their friends. My house is a magical place where dirt evaporates and items walk themselves back to where they belong. Once in a while, I glance up from the TV long enough to see my dishes take a bath and dry themselves with my self-cleaning dishcloths. All I do is think about dinner and bam! There it is, ready to serve itself when the time is right. The washing machine collects dirty laundry and bedding, proceeds to wash, dry, put it away, and make my bed. I’m like 5 episodes into my binge-watching by now. This fantasy vision is short-lived, and my brain brings me back to reality.

What they don’t think about is the fact that you can’t work because you can’t function. Your day is consumed with effort through pain, fatigue, and brain fog. There are meds to take, scripts to fill, doctor’s appointments, organizing all of this, and dozens of other equally not-fun medically related things that need to be done. They have not had to consider the implications of being unable to work for an extended period. How do you pay for your bills and healthcare, the isolation, your lack of relevancy in the world, and a multitude of other equally reasonable questions that rattle in your brain, echoing throughout your life?

I don’t work in a regular, scheduled, leave-my-home capacity because I’m unable to. I have physical limitations. I would give anything to be healthy enough to go back to work. I’m not on vacation.

The truth is, when you’re chronically ill, you spend most days just trying to stay alive. Prioritizing what has to get done & figuring out which filth you can live with for today. Because it’s not all getting cleaned. By the time most people arrive at work, your body has already begun to retaliate, to get you to retreat to your bed.

A lesson I’ve learned the hard way is that when someone living with a debilitating chronic illness shares their time with me, I must be very important to them. I know what sacrifices were made for them to give me space in their lives. Don’t depreciate their value. Appreciate every minute they give to you.