Tag Archives: FAMILY

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

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

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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