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.”
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?
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”