Truth is, I’m scattered

Sometimes things feel like failure, but may end up as new beginnings.

I’ve been back in the hospital for a little over a week now. It’s been crazy. I finally got total and complete validation for a neuro immune disease I was diagnosed with almost exactly 3 years ago called transverse myelitis.

I think the neurological community thinks it’s something you get over after a few months once you learn to walk again and the paralysis wears off. I did get past paralysis, and I did walk again. I went back to dance. I worked at a job again where I brought meaning to people’s lives. I started over.

Unfortunately, I was falling apart by falling frequently, breaking some bones along the way with those falls, having my legs go numb, and plenty of weird trembling that my coworkers would laugh that I was shivering in the Texas heat of summer. I’d go to work all day with these symptoms and unable to eat as food would make me really sick, so I got my rest in the emergency room overnight just in time to go back to what I thought was home to shower and work again in the morning.

Looking back, it was pretty incredible I sustained it so long. The primary care then treated me with antibiotics as he was sure I had a bacteria in my gut. After not getting better, he joined the bandwagon of “she’s just a crazy hypochondriac”. I was definitely crazy. I was living in some unbearable circumstances that would have made the most sane crazy. I was sick and I had gone home to my family. That’s what you do, right? Family. A word or feeling I’d been chasing for a lifetime.

A year later, I was diagnosed with celiac disease and nearly two years later, I have received validation for lots of crazy symptoms as being a result of my transverse myelitis, spine issues, and a bit of the discomfort of being treated so poorly by much of the medical community for 20 years.

My angel doctor, as I now refer to her, has pushed me harder physically and even harder emotionally. I’m doing wheelchair shopping, but what I’ve really had is incredibly painful growth. She told me last night to sit with my sadness and very much like meditation, I wasn’t supposed to analyze, I was just supposed to feel. I was also able to sit with a label I’ve been fiercely saying isn’t true, “crazy”.

So I sat, and it hurt. There are honestly no words for sitting with sadness. I recommend anyone sit with it. Do a sadness meditation. If you are having trouble feeling your feelings, sit with it. You could also have a joy meditation or anger meditation or any emotion you avoid, or explain away with fancy words as I do.

I thought I had feelings. I thought I had overcome, but what I had reached was complacency and numbness. I needed to be pushed outside of everything comfortable to me.

Maybe you would wonder why feeling so incredibly uncomfortable would be positive? I still feel like I’m in a state of constant feeling. It’s raw and not natural and I’m hating it and loving it all at the same time. I hate it as numb feels simple, but numbness gets you nothing. Numbness makes me feel so sick that I stop seeking out my joy. I haven’t been reading. I haven’t been painting. I have been dealing with the overwhelming symptoms of a disease no one could recognize was not only taking my life, it had captured my spirit that it locked in the box of my room.

My sadness has come from realizing that a lifetime of self limiting beliefs snuck up on me and shoved me down a hole. You can’t do anything in a hole. You can’t experience when you are surrounded by dirt that starts to cave in just enough to give you the fear that every goal you ever had to live a life that wasn’t about trauma had all come back to you.

As for sitting with the label of “crazy”, I didn’t do it exactly right. I actually thought about that one. I realized that it’s absolutely true. I don’t watch tv, don’t care for movies, you wouldn’t catch me getting take out. What you will see me doing is being a crazy health food nut. You will see that I’m reading 8 books at once. You will see 4 different canvases with started paintings in my living room, you will see nothing matches in my house, yet blends in the best harmony, if you know me personally, I will send the longest rambling texts ever (sorry friends). And most of the crazy you won’t see is how deep I feel. You won’t see the 7,000 ideas I have for creative projects. You won’t see my desire for a piano and a violin as I just want to create that too from a past that may remember. You won’t see the buzz that is constantly going in my head. You won’t see the metaphors that go on and on once it gets in me. Sometimes I feel tortured by thoughts and ideas and creative bursts. You won’t see the physical pain of not getting things out. You may see my disappointment of when I discover cool ideas and you give me that look like you’re crazy. (My current obsession has to do with the social networking of trees and how the forest has a language that I know as I’ve heard it).

So my title had to do with being scattered. I’m so scattered I feel a pressure to talk to nurses that clearly have more to do than me exclaim about trees.

So scattered, but it’s not entirely my fault. Im on some crazy neurological meds that may work out or just may enhance the crazy.

Anyway, I’m just going to embrace that I’m crazy and I don’t do things the way others might. I’m tortured by constant thoughts, but also love that I always have new ideas.

Is anyone else scattered or crazy or feeling something so deeply that you don’t know if you should run from it or run deeper into it? I’m feeling alone in this.

Tomorrow I go home to face a new life of using mobility aids while I leave my angel doctor behind to do what she does. I’m hoping she pushes people regularly like I have been pushed. I hope someday she will understand my huge gratitude for her and the hours she’s spent with me pushing me to grow.

Really I’m going home to grow.

Love an extremely scattered,


2 thoughts on “Truth is, I’m scattered”

  1. Hi. I am a newbie here and I came across your post recently. I am so sorry for everything you had to go through. I can’t exactly say that I understand how you feel. Those are hollow words and I won’t trivialize your feelings. But getting out of the darkness and stepping into the light requires courage. “Crazy” isn’t an insult to me. It just means you are different on a level they don’t understand. My head too is clustered with frustrating thoughts and I have decided to vent through my site :
    You can contact me if you like. I’ll appreciate your help while trying to battle my own demons.

    Liked by 1 person

    1. I would love to help you along. I have had huge growth and am honored you sought me out. You can also use my contact page to send me an email if you’d like to be more specific without being public.

      Liked by 1 person

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