True reflection

We am experience it at one point or another, that feeling where your inner self just isn’t represented with what you are seeing in the mirror. However, for me 2020 has made this drastically worse. I find myself looking at person who I always feared.

Growing up with a disabled parent is hard. My father was diagnosed with muscular dystrophy in the 80’s and my parents decided to not have kids. Luckily for me, they argued about who’d get surgery to ensure this and I popped up unplanned.

While my father lost his ability to walk, I was learning to walk late due to surgeries to fix a birth defect called Club Foot. So, my physical experience has never been “typical” in this life. I’ve always been slower, weaker, and different.

I didn’t get the right doctor as an infant for my foot, it was unseen in my little rural area. So, I ended up having extra surgery than I should have needed. I remember clearly seeing my reflection in the glass of our entertainment center. The scar tissue in my ankle had re occurred and it was twisting my little ankle sideways. Meaning I was walking more on the side of my foot than the bottom. My mom said she saw it in my little wet footprints that summer, and knew it was time to find a better specialist. We did and though my young memory is full of traumatic medical procedures, the doctor fixed my ankle to the best of his abilities. Although limited somewhat due to the botched first surgery.

I remember waking up alone in a hospital room and seeing my little arm wrapped in gauze onto a splint with a hook. It was meant to keep my IV in and hooked onto the side of the bed. My little self though thought they’d taken my hand and now I would forever be like Captain Hook! I screamed and cried, traumatizing the sweet Hispanic lady who was cleaning my room.

Fast forward and I never ran well in school. I never got good marks in PE and remember teachers yelling in my face to try harder with sit ups. I’ve always just felt like I’m trying to work through a world of very heavy gravity. Everything just weighs more on me.

When I hit puberty I got curvy. Then I hurt my knee. We were too poor for MRIs and most doctor’s acted like I just needed to rest it and lose weight. I would and it just got worse. At one point I could move my kneecap around sideways with just a slight pressure. It was constantly dislocating by then and horribly painful.

In my late teens I couldn’t tell if my knee made stairs hard or if it was something else. No one told me I could get my dad’s disease, but I knew it. Little me prayed nightly that if God needed me to learn from struggle, please just don’t let it be my father’s disease. Anything but that. I watched him slowly get trapped in a body he couldn’t move, struggling to breathe or even scratch his nose. Until it killed him before I was 16.

In my early twenties I got pregnant with my daughter. It was extremely challenging with a knee that would dislocate when just standing up. My pregnancy was lonely and painful. My partner worked nights and slowly became a monster who had no empathy and unlimited cruelty. Thinking if I could just be “normal” I’d save my little family. I rushed into reconstructive knee surgery less than three months after having my daughter via emergency c-section, with painful complications after.

That year was one of the worst in my life. Living alone with an abusive partner while battling postpartum depression and trying to heal from a knee surgery that felt more like I’d been hit by semi. I didn’t have internet. I didn’t have cable TV. I wasnt allowed to have anyone over. And anything I did around the house or to rehab was just never enough in the eyes of my partner. I finally broke and told him I needed to be tested for my father’s disease, something just wasn’t right.

This was something I’d warned him of from the very beginning of our relationship. So, it wasn’t like I had kept this dark secret. I even fought the idea of being in a relationship in the beginning, telling him of the difficulties that ensue with loving someone so sick. I was given platitudes that it wouldn’t matter due to love but I guess you can’t know until you’re in it.

Fast forward and his abuse shifted towards our child and I was done. He convinced me I deserved all his physical and emotional abuse but I knew our child did not. I became a single mom weeks before being given a muscular dystrophy diagnosis. All before I turned 23.

The years have chipped at my physical form to now I’m full time in an electric wheelchair. My diagnosis is muscular dystrophy? The genetic testing said no, but the testing is a difficult process. Doctors can’t even figure me out.

It’s so hard to live in a world where you’re simultaneously judged by your physicality and yet told not to allow it become your identity.

How can it not define me when it shapes my entire world?

Or how do I show the world who I am when my physical form is so damn far from who I truly am inside?

When will my reflection be of who I really am?

T

The Light Within

I breathe in the crisp fall air as the last of the sun’s light fades into the deep darkness of night. The cool air dances across my skin, sinking deep down until I feel a chill throughout. It is both unpleasant yet revitalizing. The intensity of cold hits my system and reminds me of life the within my body. The life within my flesh is magnified by the icy discomfort. I breathe in deeply and close my eyes to soak in the moment. Feeling my breath hit deep within me, to the place where it touches the soul. The connection makes my heart skips a beat. A smile dances across my face as I gaze up at the dark sky and look upon the stars shining brightly. Oh, how the sky feels more like home than any other place I’ve been. My spirit stirs within me, yearning for places I have not known.

The stars beckon to my soul. As though they are old friends reaching out. Whispering secrets from eons past. I long to roam freely through the cosmos. An ever shining light that travels years through the expanse of darkness searching for someone to recognize the magnificence of my soul’s inner radiance. Looking for those lost in the endless night, to guide them along until they find their own inner radiance. For only a few know what it’s like to shine brightly through the great dark ether, hoping for one day someone will see your light. Years of travel through the dark abyss to find the one who’s heart will sing at the sight of your soul’s shining.

Yet still my body feels at home among the trees, as they know how to reach for the heavens while remaining firmly grounded. They breathe in that which suffocates and turn it into life sustaining air. My heart’s greatest desire is to be like them. To transform that which poisons the world surrounding me, all the pain, all the loneliness, and show others how love can transform it into gratitude and wisdom. To show how we’re all connected and one with the flow of life.

For there is a river within each of us. Ever flowing, never knowing for sure if it’s path will bring it back to reunite with the Source. An ocean of oneness in a world full of drought. The river knows that with such shear power it doesn’t matter what obstacles lie within its path. For partnered with the currents of time, the river has nothing that can withstand it. Water flowing only needs time to transforms what is in its path. For even one day the rock will be shaped by its current.

If only these words may flow and reach out to touch another’s soul. To find those who feel lost; those searching and yearning for that which cannot quite be explained. To comfort the lonely. Those who feel beaten by the waves of crashing down on them. Lost in a crowd who is blind to the greatness that lies within. Do not fret. Do not faulter on your journey. Your contribution to the world is far greater than you can imagine. It is only once you see it that you will truly be free. Remember it is human nature to overlook the beauty of the world. Do not doubt the power you retain, due to the few who are too blind to see the magnificence of the universe that resides within you.

Realistic Positivity

fabian-moller-401625-unsplash.jpgIf you know me at all, or follow me on Instagram, you will know I am all about those positive vibes. Whether it is Law of Attraction (positivity attracts positivity). Or just down to the science of Psychology and what powerful effects positive thinking can have on your well-being. I am on board! I try to spread it everywhere and use it to get through the challenges of life and especially, the challenges of chronic illness. But I wanted to talk briefly about, realistic positivity. As it seems so often we’re bombarded with messages of “just be positive!” and there’s a point we all reach where that isn’t realistic.

I’ve had chronic pain for a while, but over the last few months it has gotten a lot worse. With horrible flare-ups that just hurt to my core. While I continue to battle for a proper diagnosis, I still am trying to get the pain under control. Due to my holistic wellness training and desire to heal my body rather than band-aid the issues. I have had a lot of issues with finding solutions. Even being adamant about not wanting narcotics, western medicine treats chronic pain with extreme suspicion. Which I understand for the addiction issues, but for a patient who doesn’t want to go down that road at all, it is still an extremely frustrating and often dehumanizing experience. For the past few months I felt like a ping pong ball being batted back and forth between doctors. Yet even clearly stating I do not want narcotics, I was verbally spat on. I kept at it and finally I was referred to a specialist. It would take months to get an appointment, but I was so hopeful this would offer me some solutions for my pain. My primary even ran scans and tests ahead of time so that I would be set for this appointment.

I’ve been driving myself for weeks to just get to that appointment, to use the pain, and have it drive me. Thinking I’d finally have options and potential answers. I got there almost an hour early, only to be rushed through intake. To find out they never even looked at my scans/tests, and had to only see the Physicians Assistant. Who would shush me every time I tried to speak. He was robotic and barely even looked at me. I felt like I wasn’t even aloud to speak, let alone hurt. I don’t feel like I was heard and I wasn’t given any viable options from the visit. It was a waste of time and it left me crushed. Then today I had a flare-up, which hit me hard. And you know what? I let it. I got the kiddo off to school, I looked at my schedule and set aside the none-essential things. Which gave me a couple free hours today. And I let the sadness, frustration, and pain wash over me. I gave myself permission to cry, be upset, feel sorry for myself, wallow. Just gave myself permission to feel. I let all those emotions that I don’t want to dwell on, pass through me. Because if I keep going like they’re not real, I will burn out. They’re a part of life. And I so often see people who believe in the power of positivity, carry this guilt of having a bad day. Yet, we’re only human and no one can realistically be positive 100% of the time. Even if you can, I think it is a disservice to your experience in this existence. Because it is part of life and it is essential to allow all things to balance out in life. But the key is to allow yourself time to let it pass through you, and not dwell inside you. It is just a moment in time and it will pass. It is just energy and it will pass.

I could go into more depth about all the specialists I’ve seen and how they treat me like I’m subhuman. How much having a disability requires me to constantly advocate, not only for myself but others as well. Just never-ending avocation and work to get through all the barriers that happen in just “normal” existence. But that is seriously enough for an epic book. One you gotta let me know would want to read. As I don’t want to just rattle on with stories.

My main point is, if you’re going through some stuff. Be kind to yourself. Give yourself permission to take a break from trying to be “on top of it all”. Learn to tell the difference between allowing negativity to take up residence in your life, and just allowing experiences to flow through you without attachments. Because life is really all about energy. There’s good and bad. While we try to maintain the positive, negative energy has to be around for balance. Most importantly with all this, please, learn if you need to take out time to retreat inward during a bout of treacherous energy. Or if you need to reach out. It can be isolating and I am so grateful for the support system I have. Don’t let it isolate you if you need someone (I’m here if you wanna talk!).

We just need to learn to not attach self-worth to the current flow of energy. So, we’re capable of navigating through it.

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Well, hello…

Yes, it has been far too long. I have no excuses. Life has had a lot to give me and I was putting my energy where it needed to be. However, I am very sorry for neglecting you. It isn’t right, and I will do my best to make sure to that we’re in consistent contact. After all, I have so much to update you on, and so much I want to share. Stay tuned!