Behind bars

So many of us feel trapped in a cage. We feel we are behind the bars of stigmas, society, traumas, limitations, disabilities, invisible illnesses. We live in these prisons unable to speak our truths and be who we are meant to be, unashamed and free. The scars and the pain seem too hard to share and even in our joy we cannot express ourselves in fear of judgment.

So I went out today to the park

with prison bars on my face. I thought if I could face the world with courage to just be me, scars, wheelchair, pain, suffering, AND excitement to be out taking photographs, covered in a cage, then perhaps others can too, minus the cage make up or hey wear it if you want! I didn’t hide that cage that I felt. I accepted it but I also pushed through it in front of everyone to see.
Do you know that not one person, and I passed about 10 people or more, said one thing except hello.
So here I am, out at the park, unafraid of what others will think, and just being me.
*a special thank you to Angelica the anghinga who posed in a selfie with me

The stick pile of my will.

One of the biggest triggers for my PTSD is vulnerability. Having multiple chronic illnesses can bring that feeling about in one moment. Seizures are top of the list. Watching my body deteriorate with this muscle disease is another. Something as simple as dropping a dish and knowing there is no way I can pick up all the broken pieces can bring a flood of emotions.

I’ve worked my way up driving the car to 5 miles. The grocery store is 5 miles away. Once I get there I can’t walk though and I don’t have a lift on my car and the scooter’s at the store my arms don’t have the strength to drive.

I woke up thinking about this muscle disease diagnosis. The “rare” and the “prognosis” and the “atypical atrophy” and the only doctor working on my case giving up on me. I wondered, what if 11 years ago I had not had that muscle biopsy. What if I did not get this diagnosis. What if the diagnosis just sealed my fate and put into my head what was to come and I stopped trying?

During this pondering I looked outside and saw the neighbor had piled all of his branches from his yard (probably from my own trees) in front of my fence. He’d done it before and then burned the pile right under all the trees. I voiced that I really did not like a huge pile for animals to hide in right there. For whatever reason, and there are many, seeing that pile of sticks in front of my fence did SOMETHING. That something was the opposite of feeling vulnerable. I felt angry and I felt strong. My wheelchair can barely make it through the grass but I drove that sucker over there with my husband’s work gloves and work boots and I picked up those sticks and moved them into a pile on his property. I knew I’d have to tell my husband that when he got home he’d have to then do something with them because I could only drag them about 2 feet. This is something my body had not done in OHHH ELEVEN years! I work myself up doing small things in the house. Even the driving, it took me one year to get 5 miles in the car. My doctor told me the more I use my body the more I lose it.

I have to tell you, I was listening to Eminem. “You only get one shot. You better never let it go. Here i go.Feet fail me not.Do not miss your chance. You can do anything you set your mind to.” Yep, I listen to a wide variety of hard rock, christian rock, opera, country, and rap. I was listening to Lose Yourself lyrics. I was repeating his words. Then I started my own. I started saying out loud:

“This disease will not win.”

“They will not win”

“I can do this.”

“No one determines what this body can do but me.”

Each stick I said one sentence. ” I will win!” ” This disease will NOT stop me.” “No one gets to control this body anymore!” I kept going and going until I couldn’t move my arms anymore. I sat in my chair and yelled out “ I WIN!” At that moment, I won. It wasn’t about the neighbor or the sticks at all. One day I will thank him for those sticks!

It was about me determining my own fate. It was about me not letting other people dictate my future or my now. It was about the abusers, my family, the doctors, not determining my capabilities. My diagnosis should have been a guide to lead me not hinder me. If my body does fail then it will be because the disease did it, not because someone else determined my fate by their negative words.

In all reality no one knows what has caused this disease, what the mutation is, what the treatment would be, or what my future holds.

Each of those sticks represented a human being who tried to throw sticks and stones. With each stick I picked up and placed where it should have been I felt a dagger being pulled out of me. One dagger at a time. One stick at a time.

If everyone is going to give up on me and my ability, I cannot give up on myself.

Moving those sticks was me not giving up on myself.

When my husband came home he grabbed them all in one handful and burned them. I watched them burn thinking as the embers were flying into the air that I had just let go of just one more piece.

Having this diagnosis, at first was empowering, because it was an “ IN YOUR FACE” to everyone who said I was making it up. Then I thought, ” oh no, I’m never going to go to the beach again, or drive again, or live again.” Getting a diagnosis should move you forward. It should not stop your growth or process or journey. Knowledge and wisdom should lead to empowerment not vulnerability.

I gave up then.

I decided to not give up anymore.

If it does destroy my body, then at least I will have lived.

Getting the PTSD diagnosis was an epiphany and a revelation and an aha moment that put me in the right direction to heal. Getting the muscle disease diagnosis was like a death sentence.

I needed to move those sticks more for my mind than for my body. The absolute agony I am in a week later is well…pretty unbearable. Muscles and bones hurt that I didn’t even know existed. I am aware that I need balance. At that moment though, I just needed to beat the odds. And I did.

I want you to read this and be empowered. Know that your diagnosis may change your life, shift the focus, alter your ability, but it should not be a cement block tied to your ankle. I decided while being “disabled” to embrace what I CAN do. Being mindful. Being self aware. Practicing self love. Photography. And MORE.

Right now, as I write this I am listening to Pink sing Don’t give up.

I implore you, “Don’t give up.Please don’t give up.”

His pile…..

MY PILE!!!

I will move forward with my mindfulness pictures, my wheelchair walks, balancing my physical abilities and inabilities, and continue to work on coping with the abuse that caused the PTSD.

What is your stick pile?

Who is in it?

What do they represent?

Abusers?

Abandonment?

Anger?

Burn those sticks even if only metaphorically.

I leave you with Rachel platten lyrics that I am listening to now as I finish writing…

“I will scream them loud tonight

Can you hear my voice this time

This is my fight song

Take back my life song

And i dont really care if nobody else believes cause i

Ve still got a lot of fight left in me

Take back my life song”

Goats and birds and sunsets

I had quite the bout of trigeminal neuralgia which does not appear to be gone this morning even after I applied lidocaine patches to the entire area. It is extreme nerve pain that comes out of nowhere shooting up my neck and into three areas of my face.

I forget how I look sometimes going out and will be in my puffy hat or my husband’s 30 year old sweat suit he wore after swim lessons or patches all over my face. The funny thing is that the people I run into when I am out looking photographing or petting the animals never say a word. Then I get home and think…how cool they said nothing about THIS! My daughter took a picture of me in the hallway wearing her hello kitty pants and a sweatshirt that I honestly forgot I was wearing when I went around the block in my wheelchair. I took the photo of myself in the mirror wearing my husbands all blue suit. And this hat! I really do need something more colorful!!! I get cold though so I just pile on the clothes, toss on the pain patches and go!

Fortunately there are others that just don’t mind what I am wearing and just let me be warm. My neighbors have become used to my attire and I guess so have the farm owners now which is pretty cool.

So below, for your entertainment is the forget how I look side of me.

Above are the pictures I took last night. I was given the gate code to visit the baby goats and I was thrilled. They were so very precious. On the way back I met my friend on the prairie for a few minute chat and I photographed a loggerhead shrike bird which I learned kills is food on the barbed wire and comes and eats it later. I was pretty shocked about that! I may have to find another bird to photograph now. I may perhaps be done with this cute little vicious guy. Either way it is fun to o out and see what I can see through the lens. It did take my mind off the pain for a little while.

“Gifts”

My husband bought me this blue butterfly necklace because of my love for the blue butterfly at the butterfly rainforest at University of Florida Museum. He then bought me a camera and took me back to the butterfly rainforest because he said if I was going to be mindful and take photos of the things that bring me joy, he wanted me to have a proper camera to do it with. He’s pretty thoughtful isn’t he. I sure enough went with my new camera and finally have a beautiful picture of the blue butterfly.

So I’ve been taking photographs with my new camera and what is so neat is that looking through the eye and seeing something zoomed in, I can really be so absorbed in the moment that I don’t notice anything going on around me at all.

My husband went to the prairie with me tonight and was watching me take photographs and saw the depth of mindfulness I can go to when really in that moment. It was pretty neat to share my joy with someone. I told him that had he not been there to see the sky, no one would believe that I did not alter the pictures. It was beautiful.

We went to the prairie because we had, prior to that, gone for a walk, and been caught in the rain. It was quite the experience as a limb fell behind me in my wheelchair and hit the ground from a massive live oak and I said, “I’m glad that didn’t hit me!,” MUCH to our surprise a few moments after came the squirrel falling that must have been ON the branch. He landed right on the road from so high up. Was totally fine!!!!!

As I was going full speed home in the rain, I saw the sky was already starting to clear and the sun was setting so I asked him to drive in the car with me in hopes of a rainbow. Soaking wet we went.

It has been a difficult number of days. My memory has been off again and I cannot recall names or dates. I posted wordless wednesday thinking it may even be tuesday but it was THURSDAY! Fortunately, no one even mentioned it. You guys are so nice!!!

Anyway, after he bought me the camera, I charged it on the left of the refrigerator. But every morning I eat a waffle and I go to put it in the toaster to the LEFT of the refrigerator and all that is there is my camera.

Well for 14 years the toaster was where my camera is now. The toaster got moved. Muscle memory is taking me to the left of the fridge to toast my waffle and YET my brain cannot recall my neighbor’s name. I fascinate myself I truly do. My brain, all of my conditions, are so complex. When I allow myself to live in a beautiful moment though, none of that matters.

Here are tonight’s pictures. I hope you enjoy them as much as we did in that moment. All of the photos were taken in one hour. The sky changed THAT much in one hour. Truly a gift. The most treasured gifts cannot be measured.

Living: part 2

My husband and I went to Paynes prairie in hopes of seeing some deer to photograph. I had NO idea where that would lead me.

We drove slowly down the road to get to the prairie. Along side of the road my husband saw one deer. He ran off. Then we pulled up a little more and saw 2 deer. I had my scooter in the back of the car but I knew that it could not go into the woods. I thought I would just walk to the edge of the woods. 2 of the deer ran off but one just stood there looking at me. My husband later said he could hear me talking to her. She turned and walked into the woods and I followed her. I have not walked in the woods for…12 or so years maybe. I focused 100% on the deer. I didn’t even look down at the ground I was walking on. I just followed her. She kept stopping and looking at me. Then we got to a clearing. I could see a pond and something beyond her. She turned around and looked right at me with another deer that walked up. I started to cry. I felt in my heart the innocence of this creature who had led me into the woods. She pinned one ear back and one to me. One to listen to me as I talked to her and one to what was behind her. Then she dashed off. She gave me this…don’t go further look…I didn’t listen. I wanted to see what she had her ear cocked back at. I walked forward and saw them. They were wild pigs, boar, I have no idea. There were 10 tiny babies. A mother. I stood there and dare not move! She saw me and did this awful squeal and I thought for sure I was a goner. Then I gently told her that I was safe and everything was ok and I would not come further. She just looked at me. I took her picture so I didn’t forget it. Then she ran off with all of her babies. I was left in the middle of the woods with this pond. I thought. Ummm. How do I get back!!!!! I’m in the middle of the woods. I didn’t even see my car!!!! My husband later said he lost sight of me and I was so far he didn’t even hear the pig.

I slowly made my way back to the car. I walked very slowly and carefully. It was not as easy as when I was focused on the deer!!! But i made it. I was immediately given a protein bar and water and announced that I could cross of walking in the woods from my bucket list!!!!

The what if list that can be wiped out by kindness

Scheduled dates give me a great amount of anxiety. There are a variety of reason’s why. 1. Do I drink water ahead of time knowing I will need help getting in and out of the bathroom in my scooter 2. My scooter will then be germed up with other people’s urine that will have to then be cleaned by me 3. My scooter will smell like whatever restaurant and then come in the house and I won’t be able to get away from the smell 4. The overstimulation of the restaurant 5. Will I get enough sleep the night before to even feel well enough to go. 6. Do I take extra breakthrough seizure meds to make sure I don’t have a seizure and then will that make me not even hungry. 7. While in my scooter will the table and food be easy for me to access and eat comfortably.

This is why any trip out can be stressful. This is why my husband is great about my spontaneously saying “ Lets go to Miapa” a Cuban restaurant that is my new found love!!!!

Today, I woke up, hadn’t had a lot to drink yet so I knew the bathroom would not be an issue, had just taken my seizure meds so that would not be an issue so I decided to go for it.

I did great until we got there and then I forgot to add to my list, anxiety (a fun partner to Tourette syndrome and OCD). I got to the table and was squished. The tail end of my scooter was sticking out, I knew there was a possibility that someone would accidently bump in to me. Forgot to add that to the list too. If someone bumps into me then it jars me, startles me, triggers PTSD if I am startled. An entire ball of….well something! All because I could not fit under the table and close enough to the wall.

ALL fixed by the waitress who for some reason could see my stress level. I have no idea how she picked up on it, but she asked the guys behind us to move their table back, readjusted our table by turning it sideways and boom all was well. My moment of panic subsided as she squat down next to me and asked me if she could help me out with the menu.

Just one kind person wiped out my list. An entire list, wiped out by kindness. My husband also was acutely aware of my distress and asked me if I was ok, validating that at the moment I was not and he noticed.

Such little things are such big things in my world.

I closed my eyes as I ate each bite of food and tried to tell what flavor I was tasting.

When we got home we went on a walk to look for pink. Any pink. There is a pink Camelia next to our house that I saved years ago with vinegar and dish soap. I cleaned each leaf that had a fungus on it. It took me hours to clean that plant with my concoction. Today I counted and stopped counting when I got to 100 buds on it. Some barely starting out, some about to bloom. Two were actually flowers. There were pink Camelias starting to bloom everywhere. Some had a surprise visit by an ant or a bee just as I was taking a picture. After our walk we went to the prairie because I wanted to wait for the pink. There was every shade of blue and orange. I waited. I even went to give the sweet horse a carrot and come back and waited some more. Finally, there was some pink. I looked at it. Then I closed my eyes and felt it. The calming of standing out there alone with the tiny wisp of pink in the clouds as the sun set.

I wondered for a minute what the infrequent passerby drivers must think as they occasionally pass me on the prairie. They don’t know I have a muscle disease. They don’t know my challenges and how hard it is to stand there. They don’t know of my long whatif list that sometimes plagues me that can be wiped out by the setting sun. They don’t know that in that moment there ARE no challenges and it is just me and the sky. Maybe they can see it on my face and know the peace I am feeling like the woman in the restaurant knew by looking at me the distress I was feeling.

Today I had gratitude for all of the pink and the way that the pink made me feel. I also had gratitude for those who notice and truly see me.