“Hey Raul, sorry about waking you up.” It’s my lawyer. She’s not calling that early, it’s 1 pm. I don’t really keep regular hours anymore. I go to bed at 5 am and wake up at 2, this is early for me.

“That’s okay.” It’s instances like these I wish I could reach up and rub the sleep out of my eyes.

“I have some good news. I just got off the phone with the state’s lawyer…”


“She said that the state has evaluated you at the acute level of care retroactive to August 8th.”

“Um… really?” It was Tuesday and I wasn’t supposed to hear from them ’til Friday. Even then, it was only supposed to be a settlement offer.

“Yes, really. You can get 24 hour nursing care immediately.”

“Are you sure?” I asked, not knowing what other sounds to make.

“Yes, I’m sure.” She giggled.

She kept talking, going over details. Instead of offering a settlement, the state just bumped me into the acute level of care – the level we’ve been arguing I belong in for the past three years. By just putting me at that level, they can avoid negotiations and paying my lawyers; Their parting “fuck you” to us. Our lawyers aren’t going to charge us because they’re pro-bono, but they need the money.

I was processing everything she was saying, but I didn’t feel anything. I’d thought about this moment so many times, I thought I’d feel something.

Everyone around me has been celebrating the whole week. People keep congratulating me, saying how amazing it is. And don’t get me wrong, it is. It’s been a very long three years filled with stress, frustration and hardship. I’ve been to the hospital more times than I can count, there’s a collection of wristbands behind my bed. My parents are certainly not getting any younger and they have their own health issues. So this is good and I should feel awesome, but I don’t.

I’ve been thinking about it for a few days, trying to figure out why. At first I thought it just hadn’t hit me, but it’s been almost a week now. Now I think I just wanted more. While this is a great result for me, it does nothing for anyone else. Countless others will have to go through the same thing and they might not be as lucky as I was. They might not have awesome friends and family or great lawyers. Yes I won, but nothing has changed. I still want to change something.

I’ve been fighting battles my whole life. Whether it be with my disease or something else. I think I’ve realized that there will always be something to fight for. No matter how much I fight there will always be struggle. Because, ultimately, that’s all life is. You claw and you scratch and you push through a sea of shit hoping there’s something good at the end.

People have been asking me what’s next. Up until now I haven’t really known how to answer them, but I think I know now. I want to make it so that no one has to fight the same battle I did. I can’t solve everything, but I can solve this. I’m not entirely sure how yet, but I’m going to change the law.

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