Tag Archives: healing

EM

I LEARNED

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This year has been one of the most challenging years I’ve ever experienced. But still, I’m here for it. 

I have been in a wheelchair for years, due to issues stemming from my Systemic Sclerosis, (Scleroderma). A little over a year ago, I went through some changes in how my doctors are treating my illness. Instead of trying to stop it, which wasn’t happening, they are treating my worst symptoms, with the intent of increasing my quality of life. Who knew that this would change everything?

I have been working hard through PT, OT, and training to regain my mobility. It’s taken a lot of determination, motivation, and commitment. Today I barely even use my cane. My wheelchair collects dust until the next big adventure that requires being in one position for an extended period, walking long distances, long days, venues with long ramps or uneven ground, etc., or during an unexpected flare. When I say it’s been challenging, it feels understated. It’s hurt, consumed a lot of time, left me in tears feeling defeated, thinking it’s all for nothing, and many other mind-fuck games our brains like to play. 

As with any illness, stress has the biggest negative impact on the body, mind, and soul. I never thought my peace would be challenged like it has been this last year. My mom’s Alzheimer’s has progressed rapidly, leaving her needing more time and support from myself and the family. On top of that, our lives took an unexpected turn as we accepted a difficult task at a major crossroads for our family. To say we’ve been under immense pressure, like nothing we’ve faced before, is a true statement. This one life-changing need in our family has had me at the maximum stress level I’m capable of working through.

I believe that every moment in our lives is a chance to learn something about ourselves, an opportunity to change and become a better version of ourselves, and once we learn the lesson, peace returns to one’s life. I have spent a lot of time on my knees this past year begging God to tell me what I’m supposed to be learning from all of the melancholy chaos we’ve endured. Why make me physically stronger just to throw a monkey wrench into my mental health, peaceful home, family, and positive take on life? 

Through this challenging time, for myself and my family, I have learned that change can often take more effort than anticipated. I learned that even if you give your full effort, things don’t always get better. I learned that I am worthy of all that effort. I learned that those I love are worthy of my effort. I learned that it’s ok to temporarily disengage from many things that were important to me to prioritize my physical healing and my family’s needs at this time. I learned that when things are broken, they can’t always be fixed, and this goes for people as well. I learned that picking up the pieces doesn’t mean that all of those pieces can be put back together. I learned that there are people in my life who will walk through fire for me and I for them. I learned that some care enough to wait in my silence for me to heal and allow me the space needed to work on healing my family. I learned that not everyone is my friend. I learned that some people forgot about me, during my much-needed silent healing journey. I learned that everyone is going through something, and I have endless gratitude for anyone who takes a minute to check in and remind me they’re there and ready to help if I need them. I learned that a kind gesture doesn’t have to be elaborate, it’s the small reminders people give, letting me know that even though I’m not present at the moment, they are there when I’m ready. I learned that yes, I am strong, but I’m also at times fragile. I learned that where there’s a will, there’s a way is a damn lie. But still, I’m here for it. 

I hold those who have taken the time to let me know they’re always there with me in the highest regard. To those who disappeared, I have nothing but hope that their journey is a happy one. For those whose mental capacity is flooded with struggles, leaving them drowning, please know you’re not alone. I want you to know I haven’t much emotional space to share at this moment. But still, I’m here for it. 

JON

TRUE NORTH

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If you’ve wondered why my output here has slowed down in recent months, it’s because I am going through a period of immense inventory-taking in my life. As I have officially reached the backside of my 20s since last we spoke, I felt it was time to start getting my mental, spiritual and soulful house in order, and to decide just what it is I want to keep doing. In that period, I have turned loose of a lot of people and happenings that I either had no interest in anymore, or was sapping the energy I once had. And I’ve become more mindful as to who I speak to on a regular basis, and the things I do, and how to balance both without the scale tipping too far in either direction, leading to burn-out or a lack of interest.

Put simply, at age 27, I am beginning to search for (and hopefully find!) my true north.



I am beginning to re-invest in what brought me joy before, such as poetry. While my lofty book-publishing dreams and long-form poetry output has ceased at least for now, I am partaking in another poetry challenge with a dear friend this year, and am pulling out all the stops, as we both have made a pact to write a poem a day for as long as we are able. Short poems mostly, as I am writing nijusan poetry, or “cheater haiku” as I call them. 23 syllables, a 7-9-7 string. Nijusan is the Japanese word for “twenty-three,” so it made sense to stick the name to these poems, and this new poetic invention has re-opened a lot of doors poetically that I thought were screwed or welded shut.

I am also trying to keep contact with dear friends who build me up and encourage me, and maintaining contact with those I already have roots with in their soil. Reaching out to dear friends is a cherished pastime for me, as I live a mostly rural life in the mountains of North Carolina. I am also taking stock of my friendships, and seeing which ones are benefitting me and helping me forward, and which ones needed to be clipped and left to the elements. While it is a bit sad to turn loose of some I have cherished, I know it will only help me and lessen the weight on my shoulders.

In addition to before, I am slowly dipping my big toe back into event organizing, as I have missed it very much. While it’s not anything to the extent I was doing in 2021 and 2022, it still fills the void that my prior schedule had left behind. Organizing weekly virtual music concerts, helping other friends with booking for their events, and kicking the tires on potential interviews are reaping newfound benefits for me, now that I know how to reign myself and my mind in, and to be fulfilled by it without being bogged down by it.

Another major investment has been continued therapy, though with the blossoming of a new season, my seasonal “blahs” have subsided for the most part. But it’s still a highly beneficial thing for me, if for no other reason than to ensure this newfound good feeling and happiness in my life sustains itself for many months or even years to come! While I have had some stumbling blocks in this new spring season, talking things over with my therapist has been immeasurably helpful in keeping me on the right track.



While I have shared a few different reasons for my absence here, there are still many ways I am evolving and growing and changing, and I will share these with you in future blog posts in weeks and months to come. But for now, I feel like I needed a bit of explanation as to why I took a sabbatical of sorts from blogging. It is because, friends, my true north is calling, and I must follow it. I’m not getting any younger, and as certain as it’s daylight, the time is now to go. ❤️

I hope this blog post finds you well, and in the comments, please share how you found or are trying to find your own true north in your life! What does it look like? What is it you’re doing to find it? If you’ve found it, what did it for you? Feel free to share!

As always, take care, much love and may God richly bless,

-Jon

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

JON

FAILURE IS ALWAYS AN OPTION!

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One of the things that the human race is scared of the most in their time on the planet is failure. This is a wholly justified feeling, as failure in certain things can feel absolutely devastating in our lives, especially if we’ve poured our blood, sweat and tears into something, only to find it in pieces on the ground when the day is done.

Failure is always a large and looming monster, especially if you are like myself and are of a creative persuasion. Failure in music, writing, poetry, painting, etc always seems to loom three steps behind us at all times. But as scary as those long shadows may be, many times we find our worries and fears about failure were transient. But still, the shadow follows us.

But five of the best words we could hear as people are: Failure is always an option.

Failure.

Is.

ALWAYS.

An.

Option.

I firmly believe that, while failure is a scary prospect in our lives, the presence of it is actually a good thing for us, as creatives and just as everyday people. And when I say this, I am NOT saying to root your expectations for a project or a relationship or a move or ANYTHING in failure, but rather to use the specter of failure to your advantage. Everyone who’s anyone has failed in their respective field many times, but in many cases, they did not become myopic after these. The failures they experienced instead only poured kerosene on the fire lit beneath them, and pushed them to grow, get better and move past what they had negatively experienced.

While I cannot speak for everyone and how they perceive failure in their own lives, I am of the belief that, when we completely remove the chance of failure in anything that we do, our work or craft will suffer. If we take a mental high-ground in our work and remove the option of failure and do nothing to keep the fire lit beneath us, we will become prone to indolence in our field, and any new ideas will be poisoned by the lack of failure. We will become creative sybarites, content to sit on our dead centers and become fat and lazy off of pleasure. Instead of neutering the chance of failure in our lives, we can instead leverage this idea of failure for our betterment, and to get a better head-start on any new project or idea we have.

As creatives and just as people in general, our lives are a constant and ever-evolving series of stratagems and gameplans for when those failures or setbacks manifest. Success and purpose equals pleasure in anything we do, and to wave the white flag of surrender and toss in the towel is tantamount to creative suicide, and starving ourselves of what every fiber of our being really desires. We must learn how to balance our reactions to failures and successes equally, so one reaction doesn’t get overtaken by the other, and sets us down a potentially dark path. While it’s human nature to mourn some on the loss of an opportunity, we must remember: For every door that closes, another will open. We must keep this mindset by our sides, if we are to continue to grow, change and evolve into the person we want to be!

I hope this blog finds you well, and in the comments, talk about a time where you leveraged failure into something that ultimately benefitted you or got you ahead in a facet of your life!

As always, take care, much love and may God richly bless,

-Jon

JON

AM I HEALING, OR AM I DISTRACTED?

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Every single one of us has had rough times, moments or events in our lives that we don’t like to talk about too very often. It can be highly uncomfortable to face those prior markers, but sometimes, we cannot avoid them. In some cases, we do what we can to avoid them, but we often find ourselves repressing those things, pushing them deep down in our minds, souls and psyches. This causes them to build up over time, and if we are not careful, the consequences can be devastating in our lives, and it will leave us having to pick up the pieces at a most inopportune time.

Which begs the question: “Am I healing, or am I distracted?”

Pushing trauma, discord, disaster, dissent, etc down in our lives only pressurizes it, and sets the stage for it to explode from beneath us at a later point. And keeping ANYTHING inside of us is akin to trying to contain a lava flow. Any feeling, any emotion, anything we may need to say to someone, any problem or block in our lives that we need to face, we must be properly prepared to meet them all head-on. If we keep them locked inside, it will make like acid and eat us from the inside out at best, and be a ticking time bomb at worst, destined to destroy both ourselves and all those around us in its wake.

Running from what we feel or are experiencing inside is not the way to go, nor will keeping one’s self excessively busy or making one’s mind imbibed with food, alcohol, sex, etc to avoid problems or shut off emotions pay any dividends to any involved party, no matter what we tell ourselves, or the things we may say, do or achieve under those circumstances. Using busy work or excessive pleasure to avoid that openness is just as toxic and damaging to one’s self as bottling it up and doing nothing on the matter.

It can sometimes feel like a game of “pick your poison”. But what if I told you that you don’t have to pick a poison?

What if I told you there is a medicine to cure these ills?

What if I told you there are three of those medicines?!



Openness and honesty and communication is tantamount to air, water and blood in importance in our lives, and the more we open up about what we are going through, the more we can either kick the dirt of what’s burying us off and climb out of the hole that we found ourselves in, or sprout roots & grow from that dirt and make a whole new, beautiful, flowering life for ourselves in the wake of it all. And the choice can only come from a sincere place inside us; it cannot come from a bottle or a pill or a magazine or the mouth of another person, it has to come sincere from within ourselves. We have to want it bad enough!

Whatever you, the reader may be facing at this time, I sincerely hope you choose the path of openness and honesty and communication, no matter how hard it may be for you to do so. I know a lot of us struggle at times with opening up about our lives and what we’re going through and asking for help, and I completely understand why, but bottling up those feelings, emotions and words can only be a poison and not a medicine. I hope you choose the path of healing, openness and bravery to walk, and I hope to see you at the end of that path!



Thank you so much for taking some time to read this blog, and in the comments, detail something you’re afraid of facing in your own life, and what you might enact to help yourself overcome that fear, and get back on even ground in your life!

As always, take care, much love and may God richly bless

-Jon

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.

EM

WE ARE THE DREAMERS

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I remember the exact moment I realized I had matured into a responsible adult. It was the day something didn’t go the way I wanted it to and instead of saying, “why is this happening to me”, I thought, “what did I do to create this outcome”. Somehow, life became easier after this revelation!

Unfortunately, the biggest obstacle in my life I did not create and I can not fix. Scleroderma is the beast I can not outsmart or outrun. It’s there, it’ll always be there. Every once in a while, I just want to curl up in a ball and shut out the entire world. But then I get discouraged and angry that I’m wasting precious time. The older I get, the more I realize how every minute matters. I don’t want to curl up in a ball, close my eyes and wake up having missed years of my life.

The lesson I’ve learned from being chronically ill is that everything matters. My lust for normalcy is insatiable. I want to get up, shower, drink coffee, whine about going to work, drive to work while bitching about traffic, survive my day to come home, make dinner and whine about doing it all again tomorrow. But my reality leaves no time for normal things.

On top of the desire to find balance in a world made for the healthy, I also want to do everything, see everything, meet everyone, and I want to experience all of the goodness in the world. Again, my reality leaves little time for all of these things. I can not tell you how many people have told me to “just do it”, go on that trip, and do all the things my heart is set on, while I still can. But I’m here to tell you that not everyone has the financial means or the health to be that person on TikTok traveling the world crossing things off their bucket list. I’m not hating, I say do all the things if you have the means. It’s just not possible for a majority of the disabled community. Whether it be a physical or mental disability, we live day by day with constantly changing medical needs and paycheck to paycheck trying to pay for those needs. We barely have time to write a bucket list, never-mind live it!

The other side of this is the people who, with negative intentions, have told me to shrink my dreams, to accept I’ll never have a normal life and move on, to adjust my life plans, and to just give in to my new reality. I’ve even had people tell me to just stop fighting the inevitable. What the…This one is probably the most painful and infuriating. When someone says this, I hear, “You’re inconveniencing my life and I need you to just be a good little patient”.

If you get nothing else from this blog, please read this and burn it in your brain. When we dream it’s with some semblance that these things are possible. Hope gets us through our darkest days. It drives us to push & never give up. Possibilities, goals, small triumphs, and even the hard work it takes to see a dream come true, are all burned as fuel to carry on. We savor the thought that the pain may end, that tomorrow will be better, that a cure may be found, and that our dreams will come true. Please don’t take that from us.

Yes, having a permanent and incurable illness means you will have to learn to navigate all the changes and hindrances that come with the diagnosis. But it does not leave a person less intelligent, damaged, incapable, irrelevant, unable to make their own choices, less worthy of friendship or love, and they, sure as hell, are not weak. An illness doesn’t make someone less of a friend. It doesn’t make them less fun or leave them not needing fun & excitement in their life. It doesn’t make them a burden, and it is not a free pass to steal their passions, hopes, and dreams.

I will not climb into my bed and be a good little patient. Sorry if this inconveniences some people & makes “their” life more difficult. But we all have the choice to be in someone’s life or not and love should be unconditional. If you see me as a burden, find a better patient, it’s not me. Unless you have a degree and can put Dr. before your name, I am not your patient. Do not cast shade on my hope. It would be better if you just walked away. It would be your loss. Because I am a fierce & loyal friend and you will never find a more welcoming & loving group than my circle.

Lucky for me, I’m a stubborn bitch who loves learning, life & people. I will not cower, I will not succumb, I will not have my life stolen by Scleroderma. Even on a bad day, I will accomplish something. Sometimes it’s a huge thing & sometimes it’s small. But to me it’s everything. I’ll continue to visit loved ones, make people smile, create, talk, study, practice, help others, make new friends, dream, hope, love, laugh, and fight until I take my last breath. I will not let the lack of money, resources, or bad health keep me from dreaming about doing all the things I want to do in this world. Will I do it all? Probably not. Will I die trying? Absolutely! 

Here’s to the warriors and all who know your worth and willingly step out into the world and share your journey. Keep hoping, fighting, surviving, and thriving, for we are the dreamers & we will not let anyone take that from us.

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!
JON

LEARNING TO SMILE ALL OVER AGAIN

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Happy New Year, one & all! I hope that 2023 has gotten off to a wonderful start for you! Most of us tend to make resolutions when the new year rolls around, some of them minute in stature, others towering over us like skyscrapers. Some are easier to adhere to and follow than others, but all of them carries weight in our lives, no matter how large or small they may be. We all want to see in-person that friend we made over the pandemic, or to go to that city, state or country we’ve always wanted to go to, or to dye our hair that color that would catch everyone’s eye. But what if we did something in the new year that cost nothing, did not require a gym membership or association admission, or did not even require approval from others?

What if we learned to smile again?

2022 was a hard year for a lot of us. Whether it came from events in the noisy news cycle, or events that happened in our own personal lives, or events that happened to others close to us in our lives, 2022 was a very draining and taxing year. Mental and emotional hardships. The projects or opportunities that just slipped through our fingers. The loss of a loved one or a beloved pet. 2022 threw plenty of ways to snatch our happiness and joy at us, and in some cases, it did steal those precious things away. To say nothing of what the last 3 years has done to the world as a whole, with the pandemic considered.

But what if I told you that we’re on a mission to get those things back?

A big resolution for 2023 is to learn how to smile again. 2023 is the year that happiness grows and re-re-regrows in our lives. With the sureness of a rose in the springtime, we will all find our way back to happiness this year. This is your call to manifest it! Cultivate your soul and make it into a garden of peace, love, joy and great happiness! Planting season in just around the corner in our lives; take advantage! This is the perfect time to rid ourselves of the reeds and weeds that was the happenings in 2022; in 2023, we will strive to toss the bad news and the noisy news and the discord and disaster and dissent into the wastebasket, and hold our heads high and look forward with clear eyes to the future! The future is eight months pregnant, and tomorrow has ALWAYS been better than today! Optimism, self-love, self-care, taking bold but calculated chances, speaking out, reaching out and loving others more will take root and flower in our lives in 2023. Gone will be the choking vines and weeds and invasive species of self-doubt, abandoning ourselves and our needs, timidness, fear, people-pleasing, attachments, conformation and self-flagellation. 2023 is our year, brothers and sisters. Let’s grab this thing by the horns and make it ours and MANIFEST all that we deserve!

I hope this blog finds you well, and in the comments, please list some ways you aim at keeping to our resolution of learning to smile again!

As always, take care, much love and may God richly bless

-Jon


EM

THEN IT HIT OUR HOUSE

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I challenged myself during the Mental Health Campaign to being more honest about my health journey. I’m holding myself to this commitment.

I love the holidays. It’s the perfect time to share smiles and lift others when life is weighing heavy on them. A chance to end the year with love & hope. I’m that person who decorates right after Thanksgiving. I send out hundreds of Christmas cards. I make dozens of random personal gifts for those who make my life better, in ways they may not even comprehend. I hide gifts around town & make baskets for the fire department, town hall, post office & animal shelter, to lift our communities spirit & say thank you. I pay attention all year & try to make or purchase gifts I know people want or need. But this year is kicking my ass & although I managed to get a few things done, it’s taking all I have. Every day I get slower & struggle more to get simple things completed. Christmas will look much different this year.

It’s the little victories that make me smile.

I’ve been going through it with my Scleroderma for the last few months. It’s raging again & it’s been difficult emotionally & physically. I’m undergoing treatments that come with side effects that amplify all of the negatives that come with a chronic illness. My jaw is destabilizing again and my teeth will take a lot of work to save. I’m losing my hair from the treatments & will soon have to just shave it off. The worst is knowing my brain fog has made me forgetful & I know I’ve let people down. It’s been damn hard. It wouldn’t be half as bad if my husband wasn’t battling health issues this year, as well. His doctors don’t want him working. They tell us he’s risking major damage to his body, and that one wrong move could be catastrophic. So we are sitting in a holding pattern financially. We sit at the mercy of his doctors deciding what surgery is next. He’s doing what he can to work, despite the warnings. Bills don’t care if you’re unhealthy.

Not everyone can afford to be sick.
That is just reality in America.

It’s one thing to be chronically ill & another thing to add in financial struggles. It’s astronomical the cost of survival. I’ve said it again & again, it does not matter how much you make, save or plan, we are all one illness away from financial disaster. On top of it all, this is one of the worst years for everyone financially. Heating, electricity, food, fuel, everything is more expensive right now & increasing regularly. Despite the negatives, we are fighting to have a great holiday & to share it with all we care about. Then it hit our house, Covid.

David tested positive first and was put on Covid meds the same day. We have to be aware and cautious of any lung or breathing issues with him. For those who don’t know he had lung cancer & a bacterial infection that resulted in the partial removal of one of his lungs. Both of his lungs have damage and it would be hard for his body to fight Covid if it settles in his lungs. I believe the meds are helping control his symptoms. He seems to be in a holding pattern, with no changes for the worse or better. He’s still battling but he’s remaining stable.

I tested positive late Friday night. Leave it to me to find out on the weekend and while there’s a major storm hitting us. I managed to get a hold of my doctor’s on-call service Saturday morning. It took hours and numerous calls back and forth between me, my PCP office, my doctor’s offices in Boston & the pharmacist. Finally, they had a plan. They called in some medications, changed the dosage on a few of my medications & held some of my regular medications. It was a whole process but I started the Covid meds Saturday night. I’m miserable. I’m trying to get up and move around as much as possible. It’s been a cycle of getting up and doing one or two small tasks & then I have to lie down again. My pain is maxed out & making it difficult to do the simplest things. I have slept more in the last few days than I have in decades. My normal nausea is increased, I’m experiencing excruciating muscle cramps & I feel like I have the worst cold, I’ve ever experienced. I’m hoping today improves with the medication. The doctors warned me that the side effects may be difficult and I may need to stop the medication.

I don’t know if Covid is ready.

Still, I carry on. Friday I did get some random gifts sent out to thank people who make me smile & I know don’t always get the appreciation they deserve. It took me all day yesterday, but I did get our tiny 4’ tree up & decorated. Today I will try and work on some gifts. It’s not looking like we will be having Christmas with our families on Christmas Eve as we planned. We realize we can not financially buy gifts right now, but we will make some amazing personalized gifts & bake some family favorites as soon as we test negative. We will not skip Christmas, just delay it if necessary to keep us all safe and strong.

I’m stubborn and refuse to change how I feel about the holidays and how I reflect on the end of another year. As usual, I will use my energy to make others smile. That will fuel my healing until I can find my smile again. So although we won’t be able to do all the things we normally do this time of year, we will still create a magical Christmas.

Today I may feel awful physically & under stress trying to figure out how we will pay for basic expenses & my treatments. But I continue to look forward to a healthier & prosperous New Year for everyone. I pray that Covid will not continue to be such a destructive force in the world. I will work hard to improve myself so I can bless others. I will continue to send smile mail & volunteer when I can. I will give freely my time & energy to those I care about & those who make me smile. Although I may be down hard right now, I choose to believe this too shall pass.

Happy holidays to all, for whatever holidays you celebrate. If you choose not to celebrate then happy end of the year! Be kind to yourself & others. In the worst of times there is always hope, love hard, & pray harder. I am so grateful for you & I love you ❤️

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.

EM

TAKE INVENTORY

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I may be an enigma. If I am, I’m ok with being odd-woman out.

I do not play with drama. I will not listen to gossip. When it comes to love I’m all in. My integrity means more to me than anything. My reputation is so far down on the list of things that matter. Giving first is a compulsion. I trust until given a reason not to. I’m not afraid of confrontation. As a friend, I’m all in. I choose kindness, honesty, love, & peace.

I have a few sayings that if you know me, you’ve heard.

~“Don’t waste your minutes.” Life is short we are only given so many minutes, don’t waste them.

~“Make good choices.” We all have choices. Don’t let anyone make them for you. Remember all choices come with consequences so put thought into them. Once you’ve made a choice, own it. If it was the wrong choice, learn from it, make amends, & move on.

~“Protect your peace.” Set strong boundaries. Do not bend them for anyone. Personal peace is as vital as breathing when it comes to quality of life.

I don’t try to fix people or their problems. I support them, love them, but allow them the space to fall. All of life’s stumbles teach us how to be better. I won’t take the chances to learn away from others & I do not let them take them from me. I’ll handle my business & be grateful for loved ones support.

This time of year we all start taking inventory of our lives. Checking in with ourselves, what we like, what needs work, what we can leave behind, what we need moving forward, etc… We seek out & celebrate our blessings, reminisce about those we’ve lost, & make an effort to express our gratitude to those still here. I always try and do this all year. But life is busy & messy. I’m grateful we have this time to remind us to focus on what is important & to contemplate changes that may be needed.

Kindness doesn’t have a season. It’s so simple. Start with being kind to yourself & it’ll grow. It’s so much better than growing the gossip grapevine.

JON

MEMORIES AND MEMORABILIA, AND THE JOURNEY ALONG THE WAY

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All my life, I have been obsessed with how things used to be. I am 25 years old, but in age only. I love the way things used to be, whether it be in music, sports, you name it. Any piece of the past in something I love, I try to cling to it. Old guitars, ticket stubs from auto races long ago, vinyl records, old signs and books, I love it all. And on top of that, I am very much Mayberrian or Lake Wobegonian in my mindset, and although I don’t regret this, I do sometimes find myself standing out like a sore thumb, especially in my own generation. And sometimes, the journey through the past can be a painful one, but the knick-knacks and souvenirs picked up along the way continue to serve me well.

I often find myself not adhering to many things my generation glorifies and follows. That makes me somewhat odd in my friend circles, but I still hold steadfast. I still believe in true love. I still believe in the good in people. I still believe that there is hope. I still believe in loyalty, trust, support and taking time for yourself. I still believe that, some way, somehow, everything will get better. And if that isn’t the way to think, it’s certainly the way to pray.

Being an old soul has its perks, but it also has some pretty hefty drawbacks as well. If you’re not careful, those trips down Memory Lane can end in sadness at times, especially if you have an overactive, overthinking mind like myself. And it can be the littlest things that start you in on trips down that road. An old radio or TV commercial. An issue of a magazine. Smells of certain plants or foods. A song. A video of an old sporting event. Even the sound of the wind or the falling of snow. I have found myself taking that journey back in time off of these things and many more. And time was when I would think back to childhood, and it would make me sad. But these days, I look back sometimes, and while there is a twinge of sadness and longing for the safe harbors of yesterday, I can smile knowing I have the memories and the memorabilia to highlight the good times, while at the same time respecting the perspective that time has added to the not-so-good parts of the quarter-century I have spent on this earth.



I have mentioned my dear mother Nancy in past blogs. The memories I have of her are of her being a valiant, strong and ethereal force in my life, and being the fighter that I model myself after today. I didn’t know it at the time, but kid me was taking notes watching her and how she gracefully fought ovarian cancer for four years, after doctors only gave her six months at first diagnosis. Three memories of her stick out strongest in my mind, the first of which being her love of cooking. The lady never failed in anything she set her mind to in the kitchen, and if I put my mind to it at times, I can still taste her wonderful cooking. Whether it be something as simple to make as black gravy, or a full-on Thanksgiving feast, she excelled. Any time I smell fresh-made bread, I think of her, for she absolutely loved making homemade bread.

The second of these memories is of an excursion to the grocery store during a snowstorm, probably 20 years ago at this juncture. It was dumping the snow, so much so you could hardly see 10 feet in front of you, but still, mom persisted. I remember giant clumps of the heavy, wet snow hitting the windshield repeatedly. I remember making the comment of, “if one more of these things hits the windshield, I’m going to scream!” And just like that, the clumps of snow hitting the windshield stopped. To this day, whenever a heavy snow event occurs here in the mountains of my beloved North Carolina, I think of her and that moment.

The third one is of how she inadvertently planted the seed that sprouted into my love of auto racing, and NASCAR in particular. It was October 13, 2002, a Sunday night. Mom was flipping through the TV channels, when she landed on NBC’s coverage of the 500 mile event at Charlotte Motor Speedway. Jamie McMurray, who was in just his second-ever NASCAR Cup series event, held off 2000 series champion Bobby Labonte to win his first-ever race. I remember watching McMurray doing burnouts on the frontstretch, and looking at mom and asking quizzically, “why’s he spinning out like that, mom?” To which she just smiled and said, “because he’s happy.” With that, she planted a love of motorsports that still runs strong, 20 years on.



There are also the memories that are not pleasant. Seeing her laying on the couch, hardly able to move after chemo treatments zapped her energy. Holding her hand as she lay motionless on a hospital bed some days. Climbing “The Tree,” a winding and hilly stretch of road leading to Boone hospital. Having every eye fixated on me as I walked into class the day after she died, 18 years ago. And the ongoing pain I feel from those days. Some days, I wish it were I instead of her that left this life for the next one, but then she would have had to have been saddled with that pain, and I wouldn’t wish the pain on anyone. Though more days than not, I find myself looking back on those days-and feeling a sense of gratitude. Yes, it was difficult. Yes, it was painful. Yes, it completely changed and re-shaped me. But over the long arc of time, it helped me. It helped me realize that I can overcome anything thrown at me. I can ride the waves and weather the storms and still come out in one piece. And through low times and high alike, I have the memorabilia to show for it-not all of it physical, but all of it are keepsakes of this crazy, beautiful ride I am on. ❤️

I hope this blog finds you well, and I hope you mention in the comments what the knick-knacks, souvenirs and other memorabilia you’ve collected along your journey mean to you, and the impact they have on you!

As always, take care, much love, and may God richly bless you all

-Jon