Tumor was successfully removed, but left without much support in recovery

A tumor started beating in my head at age 5. It took 8 surgeries, but it was removed. My personality really changed, I lost all my friends, and I didn’t know why. I was on honor roll in school again a few years after recovering. I had no plans for the future. I didn’t know what to do for college. I went away and started alcohol, a big mistake. I recovered from that a few years later. My hypersensitivity to noise and air quality has made it impossible to hold a steady roof or a job. The coughing attacks are nerve-racking and painful.

The nervous explosions at night keep me from sleeping. The only services I’m eligible for are mental health, which only want to deal me drugs. They put me on many drugs, and they made me worse. We need Neurological Case Managers. I made a website to try and get the word to the Department of Human Services that we need a program to solve the housing crisis, especially for those special cases.

They got the message alright. Funding is the bottleneck.: truemindreintegration.org/. Maybe the president can look at the plan? I moved 58 times and I sleep outside often for quiet and fresh air. Please, I don’t know where to get the help I need. So-called professionals only want to label me ‘wacko’ and deal me drugs. Our society doesn’t care about those who have a condition that’s invisible to the eye, that needs to change. I’m still left in the cold though, that problem has never gone away. I open the windows wide everywhere I move, making the place freezing cold so I can breathe. I don’t know what to do, every day is a challenge, every day I have a dilemma, “Where can I escape to?”

The fact that I lived through all this keeps me going. I love to live, there’s nothing better. It’s a rough path. There’s no reason for this suffering except for the inhumane treatment of landlords, never fixing up their houses to be livable, or the housing market, making houses to expensive, or the credit bureau, permanently damaging my credit so I can never buy a house or even get a decent apartment if one exists.

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.