catznrobotz-blog

[catznrobotz-blog]

shouting into the abyss

I don't know what to do or feel or say anymore and i just need something to make me feel a little bit more okay. I don't even need anyone to read this, I just need to get it out somehow.

For the last five years, in the midst of a bunch of other bullshit, my right leg has slowly stopped working. I need a cane to walk. My knee hyper-extends. I've had a bunch of falls. I was so desperate to have an answer. I used to yell at god and the universe to just tell me what this is so I could deal with it and adapt and hopefully fix it. All this time something inside has been nagging at me that this time its different than Endometriosis or chronic pain or just me being nuts. Part of me always knew that whatever it was, it would be life changing. It would be another thing that separates my life into a before and after. I tried everything to fix it and make it okay but nothing would. I just wanted it to be something dumb like a vitamin deficiency or a medication mix up or something that could be solved and fixed and done with.

A month a go my neurologist told me he thinks I have a progressive, degenerative disease called Hereditary Spastic Paraplegia. It only affects a small fraction of people and contrary to the name, it's not always inherited and can be caused by some mutation. Everything matches and fits and this is it.

My leg will not get better.

My other leg will have the same fate.

I might need a walker, a rollator or a wheelchair.

My gait will get worse and worse and if I can walk, I will have a very visible and identifiable disability.

I'm not a stranger to disability. I had a very common illness that was treated incorrectly and as a result, I have a permanent disability and chronic pain. My life became very small after that. I had to stop working a job I loved so much and go on disability. I couldn't drive my car because of all the medications. I stayed home living with my mom. I haven't dated in years. I never had kids. I never traveled to the places I want or do the things I want to do. I don't get to work at a job I was so good at, that made me feel like I was on top of the world.

Now I'm 35 and my life is over. My life will just get smaller and smaller and smaller until theres nothing left. I will never achieve my dreams or help people and will end up falling down and pissing myself instead. This wasn't supposed to be my life. I shouldn't be crying silently in the middle of the night in a twin bed.

All my life, I wanted kids desperately. If I could only do one thing in life, it would be that. Now time has run out. No one will want me like this. It wouldnt be fair to have a child and risk it getting this. I couldn't play on the playground or go on a hike with them or run on the beach.

Everything is gone now. I will never have anything I wanted or dreamed or just fucking needed to do. I can't stop thinking about it and crying about it and being so goddamn angry that I'm going to explode. I can't tell my mom how much this hurts because it will just hurt her even more. My brother doesn't care. I shut out all my friends except one. I see him once or twice a year and I'm so happy for him but it hurts to see him going through life and accomplishing things I never will. I can't ever use an exit plan because my mom can't take another one.

I just want to lay in bed and cry and scream until I have nothing left in me. This is ripping me apart and I dont know what to do anymore. I don't want to do this anymore. I just needed to scream this into the abyss just to get it out somehow or some way.

Fuck.