Tag Archives: hope

JON

VICTORY LAP

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There are beautiful moments in our respective journeys that make us realize, “Wow. I’m glad I stuck around for this!” Last night was one of those nights. As I have documented in past blog posts, I am an avid race fan. If it has four wheels and goes fast, I’m either gonna watch it or be there for it. And I got the rare treat to visit the famed North Wilkesboro Speedway in the Brushy Mountains of North Carolina last evening as part of an open house they were doing before the racing commences next week. It was a beautiful night, full of memories, photos, activities, famous stars and great food. It was also the first time I had been back in the facility since last August, which coincides with my commencing writing blogs on this website. A lot has changed since then, both at the track and in the life of the person who is writing this blog. It’s been a great period of revival, renewal, change, growth, overcoming and trying. But now, I am in one of the best mindsets I have ever been in. And it’s time to take a victory lap. 🏁

The very first blog I wrote on this website was entitled “Moving At The Speed Of Life.” In this blog, I detailed my life and my journey, and how it was just getting started. Earlier in the month of August, I came the closest I had ever come to ending my own life. I found myself under immense and seemingly inescapable stress, I was dealing with loss and self-doubt and feelings of failure in my life, and I thought generally that I was going to go nowhere in my life, despite all of my best efforts. I had gone as far as to seriously consider the thoughts of suicide that were floating around in my mind at the time. I had even written notes, but had either threw them in the trash can or burned them. I thought my race had been run.

Simply put, I was in hell.

But over the span of the coming months, it was dear friends such as Renée Yaworsky, Diane Coll, Sandie Dee Ingrande and Just Another Badass Warrior founder Em Farwell that helped me chart a course. With great patience, diligence, love and kindness, they helped me lay out a game plan for my growth. They showed me that it was OK to take my foot off the accelerator and run my own race at my own pace, instead of trying to people-please and bury myself. They helped me gain resources and tools and tricks to overcome, they helped me find my therapist (shoutout to Elizabeth!), and they showed me that indeed, life is very much worth living. And without the help of those five women, nights like last night would not have been possible. I would have been in a much deeper, darker place.

Last night was my proof that life is worth living. I got to meet, talk to and shake hands with people I never dreamed I’d see anywhere but on television or on social media posts. I got to see and take pictures from viewpoints I never thought I’d get to see. I got to walk around my happy place for the first time in 13 years. And it was all thanks to five kind, sweet, decent, beautiful, loving and caring angels who made it possible. All the moments like last night, all the accolades I receive in my creative endeavors, all the heights I reach will be thanks to those five wonderful ladies mentioned above. ❀

I hope this blog finds you well, and in the comments, talk about something cool you have done recently!

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

-Jon

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.

JON

DEAR MOM

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February 18. The day will never not send a chill up my spine, when I think of what happened on this day, 19 years ago. I have told the story of what happened that day in blogs prior, so I will spare it from being repeated, but there are some things on days like this that qualify for repetition. And so, I will repeat a letter that I included in one of those past blogs. It is a motherly variation of a letter that Paul Harvey recited on a broadcast nearly 30 years ago, a letter than was originally shared by a fellow named Dr. Jack Schreiber of Canfield, Ohio, on the occasion of Father’s Day. A few years back, I decided to take what Dr. Schreiber had written, and translate it to someone who has lost their mother. Although I do not have children of my own, and though my mother has not been gone as long as what is in this letter, it nevertheless resonates soundly with me, and, if you struggle with the loss of your mother, may you find some comfort in this letter as well. From here onward, I will be quoting.

Dear Mom,

I am writing this to you, even though you have been dead for 30 years. Whether you can read these lines, perhaps you can read my thoughts. But there is still some things I need to say, even if it’s too late.

Now that my own hair is gray, I remember how yours got that way. I was such an ass, mom……..Foolishly believing in my own teenage wisdom, when I know now I would have benefitted most from the calm, right, wholesome wisdom of yours.

Most of all, now that I have children of my own, I want to confess my greatest sin against you: The feeling I had, for which you did not understand. Though when I look back now, I know that you did understand. You understood me better than I did my own self……How patient you were, and how futile your efforts to get close to me, to win my confidence, to be my guardian angel were. I wouldn’t let you. I simply wouldn’t let you. What was it that held me aloof? I’m not sure, but despite my best efforts, my own children had to build the same wall between them and I. And there’s no way I can climb over it or go through it, and what a shame, what a waste.

I wish you were here now, across this table from me. There’d be no wall now. We’d both understand, now. And God, mom, how I do love you, and how I dearly wish I could be your companion again. Well…….maybe that day isn’t far off. I’m guessing you’ll be there, waiting to take me by the hand and lead me up the further slope. I’ll put in the first thousand years or so, making you realize that not one pang of yearning, not one morsel of thought, not one second of worry you spent on me was wasted, it all came back, and it all paid off eventually.

I know that the richest, most precious thing on earth and one of the least understood things is that mighty love and tenderness and that everlasting craving to help that a mother feel toward her little ones. But none of her children can realize this until the roles are reversed. Even now, mom, I’m tired, weak and longing, and would hasten to join up there in the Great Beyond, except for my children…….They’re all fine, sweet, caring and upstanding young ones, all very capable, self-sufficient, highly talented and loving toward all. But, mom, I reckon I’ll stand by a little longer, to help them along, and to watch them shoot for the moon and land among the stars, and to be there for them, if they ever need me. You understand.

Signed,

Your loving child

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.

THRIVE TO SURVIVE

INTRODUCTION

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Hello! Welcome to Thrive To Survive! This is a special side-project that will tie into Just Another Badass Warrior, a blog & interview series taking a look at how folks have overcome the various obstacles presented in their lives, whether they be physical or mental. Your host, Jon Phipps, will take an in-depth look into the stories of those he interviews, while also finding out the pathways to the light at the end of the tunnel for his guests, while seeking the same for himself. May you derive hope, inspiration and clarity from this blog!

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

RIDGES & VALLEYS

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As 2022 draws to a close, I catch myself reflecting back on the year that was in this wild ride we call life. And it much resembles my beloved Appalachian Mountains: Lots of ridges, but a whole lot of valleys as well. Creatively, I summited several ridges, and was able to drink in the views from them. I was able to do things this year that most could only dream of doing. I got to interview several people I look up to across many aspects, I got to organize virtual festivals and fundraisers to help out several dear friends, I got to be witness to and have directing abilities over many wonderful, inspirational, eye-opening and moving shows this year. I scored one-third of my all-time front page selections on the poetry site I frequent this year, and furthermore submitted one of my poems for publication in an actual hard-copy book.

Outside of the creative realm, I was able to spend more time with beloved friends this year, including helping one move to this wonderful Tar Heel State. I also got to visit places I had not been to since I was a child, namely Nashville and surrounding environs. I got to attend multiple racing events this year at an array of historic tracks here in North Carolina, including Charlotte Motor Speedway, Hickory Speedway and the famed North Wilkesboro Speedway. I was able to find deeper love, meaning, kindness and care in the friendships I have already cultivated, and was able also to make several new friendships this year, both in my personal life and in my life online. I was also able to find several online communities that catered to the things I love, like auto racing, radio & television history, true crime and more! And not to mention, I finally found a new feline friend in Vidalia!



But also in the span of this 365-page book we called 2022, I fell to the valley floor several times. I let emotions and feelings get in my way on multiple occasions, which led to many worry-filled & sleepless nights this year, as my mind played out wildly unrealistic scenarios and events. I let the “red mist” overcome me on several occasions, and it resulted in me becoming a hassle to work with, and in some cases to be friends with. I found myself unable to take my foot off the throttle and give myself a break & a chance to get my head in a proper place, which resulted in me very nearly ending my life back in August. I lashed out at friends and co-creators when they didn’t deserve it, and when the situation I was mired in was nothing more than my mind feeding me lies and tall tales about those people. Above all, I put my own self on the back burner for the sake of those around me in my life. I thought I could be the knight in shining armor, rushing in at the last instant to protect them from themselves, when all I was doing was tripping over my feet and faceplanting into the mud.

But after every valley floor comes another ridge to climb. I started therapy in November of this year, and I am very much looking forward to scaling this ridge in front of me, and to take in the sweet, unobstructed view from high atop it. It’s going to be a hell of a mountain to climb, but now being equipped with the right tools for such a task, I feel I can fly to the top of it, or better still, take that mountain and move it outright! With the help of great friends, a wonderful therapist, and readers like you, I can do no wrong in this ever-evolving journey ahead! Not every part of this leg of the journey will be easy, but I feel a lot more confident about than I did a year ago, a month ago, even just one minute ago! And I hope you all will stick with me on this journey ❀

I hope this blog finds you well, and in the comments, mention some of the ridges and valley you have experienced in the year 2022!

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.

EM

WAKE UP IN MY SHOES

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Wake up in my shoes.

I slept. It wasn’t long, probably less than an hour. But I slept. As I awaken, I thank God for another day. Now comes the worst part of my entire day.

My eyes open, not fully, just enough to let a sliver of light in. My morning is seen through the sandman’s sleepy seed remains, in the corner of my eyes. I contemplate opening them further. I’m not yet ready.

I’ve talked before about that first step. It brings me excruciating pain & remains the most difficult step, I’ll take all day. I lie in my bed for a long time slowly talking myself into getting up. I’m finally ready, I’m full of dread and drag my legs to the side of the bed. I sit there and again give myself a pep talk. I set my first foot on the floor, then my second. I feel around to get my feet in my slippers. I sit awhile and then push myself up onto my feet. I’m standing. I did it.

There it is, my morning kick start
pain. It starts in my feet and crawls up my legs into my back and ends at the base of my skull. It feels like every bone, muscle, tendon, nerve, every single fiber of my existence is on fire. I’m in my head screaming, this will end, this will end, this WILL end! It takes me a minute to refocus on the task at hand & I eventually take that first step. Other steps follow and over about an hour the pain subsides.

Here’s the thing, my pain tolerance is high. I’ve endured nagging, lingering pain for over a decade with this disease. My pain level holds at around seven all day, every day. The pain of those first steps is so far beyond measurable on the pain scale, it’s impossible to convey. Starting my day is physically & mentally exhausting.

I go to bed every night knowing I will play this whole scenario out again for all of my tomorrows. Here’s the miracle in this story. Every day I’ve been lucky enough to wake up. So far I have a perfect record for taking that first step. I’ve managed to survive the pain 100% of the time. I have a full & happy life. It’s just more challenging than it used to be & some days I have to surrender & let pain win. But the next day I take that first step again.

I know that many of you can relate in some way to this post. You’re not alone, I’m proud of you & never forget the amount of strength that first step takes. You slay dragons before your feet even hit the floor & that is badass. Carry on Warrior.

JON

NANCY PHIPPS: IN MEMORIAM

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Nancy Benge Phipps. That name may not mean much to you, but that name will forever warm my heart and set my spine in a block of ice. That name belongs to the lady who brought me into this world, soon to be 26 years ago. She is my mother, and I am forever grateful. On the day I write this blog, she would have been turning 63 years young. She is the first one who shaped me, molded me, inspired me and taught me. She was my rock, if only briefly in my life. Below, I will tell you mom’s story, and I will tell you about five very special women in my life who carry on mom’s legacy in their journeys and what they do, and I will close this blog with a letter, written not by me, but by a son or daughter to their mother, under the auspices of better late than never.

November 6, 1959 was when her journey started, under less than ideal circumstances. Mom was the product of her mother, my granny, being raped, when she was just 15 years old. Her arrival into this world could have easily not happened. And in another realm or time or place, it may not have happened. But November 6, 1959, it did. Back against the wall, from birth. But nobody could back Nancy Phipps into a corner, for damn sure. Mom grew up as most children in rural northwestern North Carolina did in the 1960s and 1970s: Without adequate means, but she always made do with what she had, and always was able to pull a lot out of a little. That was and still is the way of many in the High Country of North Carolina. She was an excellent student in her school days, receiving high marks and higher praise by those she had as teachers. I still have a couple of her notebooks, many pages covered in meticulous notes.

Mom’s first job out of high school was at the Bantam Chef, one of the many greasy spoons in the little town of Jefferson, North Carolina, where her and I were born. It was here that she first caught the attention of my father, and a relationship began. May 28, 1982, the relationship culminated in a marriage that lasted to the day mom left this life for the next one. After several years of trying, on November 25, 1996, yours truly was born. It was I that first gave mom that very badge. And blessed I was, coming under her tutelage and care, and likewise my brother Evan, who came along a little over two years later, on December 28, 1998. Mom gave her all and at least 110% more to the both of us. She loved u with her entire heart, and did her level best to protect us best she could from the world and what all it can and will throw at you. And she did this to perfection. Even when the bottom dropped out.

In 2001, on a date that I don’t remember and honestly don’t care to remember, mom sat us down and broke the news to myself and Evan: She had been diagnosed with ovarian cancer, and that she could die as a result. I hugged her neck like I never had. I cried harder that day than I ever had. It was at the age of 4 or 5 that I first caught a glimpse of what mom was trying to protect myself and Evan from: The harsh reality of life, one of the millions of them dealt to each of us in time. Over the next 3 years, I saw sights and felt feelings no small child or grown adult should ever have to see or experience.

The sight of mom pinned to the couch, not having the energy to do so much as move.

The sight of mom and dad fighting, and getting her getting hit by the man you viewed as your father.

The sight of mom ordering, getting mailed and trying on various wigs, as her beautiful hair slowly but surely fell out due to chemo.

The sight of mom lying in a hospital bed, unable sometimes to keep her eyes open, as every morsel of energy got ripped out of her over time.

The sight of the many face masks and hospital wrist bands, demented souvenirs of the many trips to Boone hospital.

And the sight of a school full of eyes looking at me, when mom’s valiant battle ended.

February 18, 2004. A Wednesday. I remember waking up that morning to the sight of some men in suits setting up a small table in the living room. They were from the funeral home. On the small table was a book, for visitors to sign their names. They told me that mom had lost her battle with ovarian cancer. I refused to believe it. And maybe in some twisted, circuitous way, I still don’t believe it. But whether or not I decided to dwell in fantasyland, the cold reality was that my rock was gone. It did not crumble. Nancy Phipps did not crumble under those unique and hellish pressures. But it left me. The bottom dropped out from under my feet. At 7 years old, my world went dark and forever changed.

I spent several months afterward just trying to make it make sense that she was gone. I swore up and down this wasn’t real. I do not remember mom’s funeral or when we buried her. In a reverse way, I am glad that the waters of time eroded those memories away. But I remember the feelings. The moments. Hearing certain songs on the radio. Clinging to the memories of her I did have. The smells of fresh bread baking, something she loved to do. Taking comfort in friends in and their parents, including Angie Salmons, the mother of my friend Kierra, who took me and Evan in as if she were one of her own, even though she herself was deep in the throws of her own valiant battle against breast cancer. Remembering rides in the red 1994 Oldsmobile we had. Her taking me to the grocery store with her, and thinking the Lowe’s Foods in our town was so expansive. It looked like a skyscraper inside and out, to my child mind. Remembering how mom loved to watch NASCAR races on television, and how she loathed listening to them on the radio. The quilts she loved to knit. The food she made, that she aced every time, without fail. Hugging her. Telling her I loved her. How I wish I could do it all, just one more time. 44 years young. It wasn’t fair, and it isn’t fair now. But it is life. And mom would want me to move on. And I have. Or I’d like to think I have, even though the battle scars I bear from that time period may never fully heal. The milestones me and Evan have reached and will reach…….they are sweet, but also tainted with the bitter taste of knowing she isn’t present for them, and never will be. Me and Ev graduating. Evan getting married. Me publishing my first poetry book and putting out my first album. But the memories live on. And somewhere, some way, somehow, she is there. Even if we cannot see her, she is there.

I may not have her valiance and love and care in a physical form, but I for sure see it in those around me. In six ladies in particular, I see it. Six bright, razor sharp and valiant ladies in their own right. Each carries a piece of what mom embodied, and it is because of this that I gravitated toward them.

The first of these valiant ladies is my best friend, Renee Yaworsky. I first befriended Renee the day after my 24th birthday, in November of 2020. I right away noticed that the beauty of her heart and spirit matched exactly that of mom’s. This would only become exemplified, as I found out about the health struggles Renee so bravely fought and is currently fighting. I saw in Renee’s soul that it carried 10 pounds of mom’s strength and bravery in a 2 pound sack. My jaw was on the floor, and a tear was in my eye when Renee told me her story, as it so closely paralleled my own. I couldn’t believe it. It was as if I was looking into a mirror, and I was seeing mom’s reflection. I gravitated toward Renee, and it connected even more when I found out Renee so loves to wear wigs, or hair-hats as she calls them! Mom courageously rocked the wigs she owned, and I am sure she would have smiled had she seen Renee’s collection of them. From the valiance grew a friendship, which has become a close friendship, and a working, creative partnership, which has so enriched me.

To Renee, I thank you for carrying mom’s torch with such dignity and courage and respect, and for being my light on a dark corner. ❀

The next of these incredible ladies is one of the co-founders of this very site, Em Farwell. Em I came to know through Renee, after we had brought her aboard to help us in Cosmos Creative TV, the wide-spanning array of digital programming Re and I put together. I very quickly noticed how Em ran things: Tight and concise, just as mom had been in the doings in her own life. Like Renee, I soon found out about the various health battles Em faces on the daily, and how she is fighting and overcoming them. After I told my story, Em quickly took me under her wing, and made me one of her own. It’s as if God and mom each put a hand on her shoulders and guided her toward me. With Em’s encouragement, love and support, I am now charting a course to helping heal a lot of the wounds that I received in those times when I was lost in that deep, dark jungle, and was unsure of how and when I was going to get out.

To Em, I thank you for showing me a path forward, and for teaching me that it’s OK to not be OK, and for holding my feet to the fire. ❀



The next of these shining, sparkling souls is Diane Marie Coll. Diane is someone I met through Kimono My House, a virtual concert group on Facebook. As wonderful a singer, songwriter, comedienne and show host as she is, she is also a wonderful therapist, and a close and cherished confidant. When the bottom fell out for me mentally over the summer, Diane was one of the first to pick up the broken pieces of my soul and rearrange them into something presentable again. She loved me at a point when I could not, would not love myself. And moreso than that, she presented me with options and resources, and was firm but kind in her insistence that I seek help, after many years of brushing it off. And am I ever glad I listened. It was Diane’s holding me accountable and spearheading the necessary changes that got me started down the path to self-betterment, and I cannot wait to take those first big leaps!

To Diane, I thank you for being part drill sergeant and part cheerleader, and for encouraging me to see things in a completely different light. ❀

Th next of these clear, powerful voices is Sandie Dee. Sandie is another person I met via an online concert group on Facebook, this one being Socially Distant Fest. There have been few who have encouraged me and waved the pom-poms and drove the hype train for me quite like Sandie has. What she has been as a supporter, she also has been for my best interests. Sandie is a persistent, driving force in my life, and is always looking out for me and wanting what’s best for me. She’s a splitting image of mom in this regard, and I am forever grateful for this. Like Em, she has taken me in as one of her own, and although Sandie and I butt heads from time to time, it’s always from a place of love, kindness and wanting. Sandie has been there for me for so long, and her kindness and support has been greatly encouraged.

To Sandie, I thank you for always being here, and for making sure I am taken care of. ❀

The next of these human roses is Corrie Lynn Green. Corrie is another one I came to know from Socially Distant Fest, and to chronicle her journey is to have it run parallel with mom’s. Like mom, she valiantly fought cancer, in her case breast cancer. And like mom, she fought this awful disease tooth and nail. And Corrie Lynn whipped that bear. And she decided to sing out in joy. Corrie has just released an album of music from my beloved Appalachia, and like mom, Corrie loves to sing, and her voice fills me with joy. Mom would be so proud of Corrie and how she has fought and continues to fight for others, even though her battle is won. Precious is the souls who can continue to shout and advocate for those who are fighting cancer in place of mom, and Corrie’s is one I hold in the uppermost echelon of my being.

To Corrie Lynn, thank you for being a voice to those fighting, and for encouraging me to find my own, in the Blue Ridge hills. ❀

To conclude this tribute to those in my life who carry mom’s legacy, I will honor my friend Jaime Bennett. Jaime is someone I came to know a little later down the pike, though also from Socially Distant Fest. I had the pleasure and honor of directing Jaime’s show called The Warrior Within, and in that show, Jaime would always touch on a topic that was near and dear to her heart. In directing these episodes, and hearing her tell stories of things almost unimaginable happening to her over her life, it made me cry to know that she had fought many of the same battles mom had fought in her time. While Jaime’s battles align a lot with ones I have fought in my own life, it drew me that much closer to Jaime to see the battles of mom’s that she has fought, and all of them so fiercely and valiantly.

To Jaime, thank you for showing me that my battles are valid, and that I can indeed talk them out without fear of judgement. ❀

In closing, I will include a letter. This letter was not of my own hand, but is influenced by me. It is a variation of a letter that Paul Harvey read on a Father’s Day broadcast many years ago, and one that I changed slightly to be from the point of view of a son or daughter writing to their mother. The letter reads as follows:

Dear Mom,

I am writing this to you, even though you have been dead for 30 years. Whether you can read these lines, perhaps you can read my thoughts, but there is still some things I need to say, even if it’s too late.

Now that my own hair is gray, I remember how yours got that way. I was such an ass, mom……..Foolishly believing in my own teenage wisdom, when I know now I would have benefitted most from the calm, right, wholesome wisdom of yours.

Most of all, now that I have children of my own, I want to confess my greatest sin against you, the feeling I had, for which you did not understand. Though when I look back now, I know that you did understand. You understood me better than I did my own self……How patient you were, and how futile your efforts to get close to me, to win my confidence, to be my guardian angel were. I wouldn’t let you. I simply wouldn’t let you. What was it that held me aloof? I’m not sure, but despite my best efforts, my own children had to build the same wall between them and I. And there’s no way I can climb over it or go through it, and what a shame, what a waste.

I wish you were here now, across this table from me. There’d be no wall now. We’d both understand, now. And God, mom, how I do love you, and how I dearly wish I could be your companion again. Well…….maybe that day isn’t far off. I’m guessing you’ll be there, waiting to take me by the hand and lead me up the further slope. I’ll put in the first thousand years or so, making you realize that not one pang of yearning, not one morsel of thought, not one second of worry you spent on me was wasted, it all came back, and it all paid off eventually.

I know that the richest, most priceless thing on earth and one of the least understood things is that mighty love and tenderness and that everlasting craving to help that a mother feel toward her little ones. But none of her children can realize this until the roles are reversed. Even now, mom, I’m tired, weak and longing, and would hasten to join up there in the Great Beyond, except for my children…….They’re all fine, sweet, caring and upstanding young ones, all very capable, self-sufficient, highly talented and loving toward all. But, mom, I reckon I’ll stand by a little longer, to help them along, and to watch them shoot for the moon and land among the stars, and to be there for them, if they ever need me. You understand.

Signed,

Your loving child

I hope this blog finds you well, and in the comments, please feel free to share memories of your own mother, whether she is still with us or not.

Take care, much love, and may God richly bless,

-Jon

EM

MOTHER’S DAY IS COMPLICATED

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For many, Mother’s Day comes with conflicting emotions, triggered by all of the Hallmark-esque, posts, & comments of perfect children, perfect mothers, & perfect lives.

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EM

MY DOGS

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  • dog [ dawg, dog ] noun
  • faithful companion, snuggle buddy, depression buster, biggest fan, gentle caretaker, hiking partner, emergency alert system, unconditional love bug, never-let-a-crumb remain on the floor vacuum, best friend, squirrel chasing, unfailing hero, personal trainer, fierce protector, motivational coach, alarm clock, doorbell, official guest greeter, sled puller, chicken wrangler, hole digger
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