Last night was a belated birthday dinner for a friend of mine, a friend of hers called and invited me to honor our friend. I paced and planned so I could go.
It felt good to go out and be social, good energy, but found myself frustrated by an invisible wall that separates me from the normal world outside of disability and survival. I was told every time I tell my story I’m putting negative energy out into the world and my body is reacting negatively to that. I wondered why people were talking at me, giving advice when frankly I don’t recall asking for it.
The friend we honored hugged me at the end and said I was a beautiful person, I jokingly said, “Aw, Gawrsh” like Goofy does to Mickey Mouse. They said I need to speak of the beautiful person I am, I am a person with a condition, not a condition. I said I was joking, they didn’t hear it. I felt like everyone there was taking my inventory when I’m not equipped to do the same for them (maybe a good thing.)
I felt alien, like I wasn’t on the ‘feel good bandwagon’, but honestly, who feels good when going through stuff like this? A gal talked of God’s promises and I wondered if she’d ever experienced this kind of stuff I’m experiencing. Outside of the loss, I told her what I experience is like early Alzheimer’s surely that didn’t sink in her memory as she told me what to do and things I need to remember. She’s newly married with five acres on waterfront and is going to have a house built this year. She said they have three cars they have to sell, “toys.” At some point I got overwhelmed or brain fatigued and I struggled to speak, I got to where I was unable to engage anymore. She continued talking. She apparently works for a company that gives monies to the banks that give lenders money or something to that affect. At any rate, I told her where I’ve looked, the research I’ve done and there are no resources for people like me in my shoes.
I knew I was getting to a bad brain space when I was struggling to close the lid of the food container I was given for my leftovers. It was embarrassing!
Yes, my body is experiencing stress because currently life is stressful. My being there took a lot, I got there before everyone so I could look at the menu and try to decide while I still had brain energy to do so. It was loud and in hindsight I really wish I had decided on a menu item and ordered before everyone got there. With all the noise, brain fatigue and everything, something as simple as trying to decide what to eat becomes a challenging test.
I just don’t think people understand. Yes, when I’m not in survival mode I can take better care of myself, but who can losing everything with a smile? I don’t know. The gal was talking about how with God there is joy. And if you don’t have joy you’re on the wrong path. Wow, and I began to feel like Job!
The last thing I needed was more people telling me what I wasn’t doing right. One day I’ll be stronger, but in moment, their words brought no comfort or encouragement.
It is easier to try to fix the person than it is to get involved and make a difference. I guess I resent that, I didn’t go looking for advice, they simply asked how my life is going and it’s messy, people! I am still looking for an answer and wondering why it is either you’re fully self-sufficient or you’re fully disabled and lose everything, I’m talking about this because it’s my life right now, it matters, and I’m not the only one who experiences it.
Sometimes I think maybe I should write an open letter to the world apologizing that my humanity, openness, honesty, and disability makes them uncomfortable. We are told to live authentic lives, I am living one. It’s not pretty, it’s not fun, but it is real life, and real life is what I want.
It is times like these I can be right next to a person or sit across the table and yet feel a world away.
I am a person to be loved, not a problem to be fixed.