Tag Archives: walk a mile

LOOK TO THE ENDGAME

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.

WE ARE THE DREAMERS

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.

WAKE UP IN MY SHOES

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.

LET’S GO BACK PART VII: Waiting On Insurance

“It’s such a web that’s weaved. Each individual silk line slowly forming a web that those with an illness must live within”

Continue reading LET’S GO BACK PART VII: Waiting On Insurance

WE WOULD NEVER ASK YOU TO WALK A MILE IN OUR SHOES. NO ONE DESERVES THIS…

Come and join us down the illness rabbit hole. Where we will share our journeys through this life as ill and disabled people in an abled world. We met through a mutual commitment to fighting for children of Vietnam veterans whose medical issues are attributed to or presumed to be from their parents exposure to Agent Orange in Vietnam. Through our activism a friendship grew. Together we are a powerful force to be reckoned with.