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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. 

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

“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!

JON

LEARNING TO WALK AWAY

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Like so many, I am prone to stick by the side certain people or things. No matter what may transpire, I almost always come to a resolution with the people or group. While this is vital in maintaining healthy friendships and relationships, there comes a point sometimes where, despite your best efforts, these people or groups will not change. They will remain stuck in their ways, for better or for worse. It sometimes feels like you are screaming at a brick wall. And it also feels at times like, if you took action, it would be the straw that breaks the camel’s back, or the thread that unravels the entire quilt. But three things I had to realize to get out of this cycle is:

1) I am not responsible for decisions certain people make.

2) I am not responsible for what certain people may believe.

3) I cannot offer change and new ideas to people if they are not willing to change.

In the very recent past, I had a jolting realization and revelation in my life: I need to walk away from some people. My love for them will never change, regardless of the decisions they make or what they believe, how set in their ways they are, or if their visions, dreams, goals, etc were different than mine. I can still love them, but from afar. While my cries for them to change may have fallen on deaf ears, it’s their decision to make to remain entrenched in their ways, not mine. Instead of draining my resources on them, I’ll simply let them be. If their visions, goals, ideations and whatnot don’t mesh with mine, it’s not my responsibility to change them. I might be the bad guy at day’s end by walking away, but I’m not going to be the downfall or part of it. The best I can do is let the wild horses run, and hope time or karma take their course, and that they will make or let those people see the light.

It’s a commonality in all humans to want the best for those they love and care about. But at some point, you find yourself losing your own way. You find yourself becoming ever drained by constantly trying to nudge someone into a new way of thinking or doing, and while your intentions are good, it will just leave you with a wagonload of heartbreak and disappointment. The best you can do is be there for them, but at an increased distance, and to love them from said distance while they do or think whatever. All you can do is just hope and pray that a new sunrise finds their life, and that they see the right and proper light that guides them toward better in it.

I hope this blog finds you well, and in the comments, talk about a situation you are in or have been in that fits this post, and what you did to get through it.

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

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

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.