Kamala

Rare Form

I had a good life in Laguna Beach. I could see the ocean every day. I was a beach girl. I really loved it. When I worked, I worked hard. I was a hard worker. During the day I was an optician. At night I worked at restaurants. The last was a hot spot where everyone wanted to go. The wait was 3 hours – I would tell people that they should go out and eat, then come back when the wait was over. I seated many famous people – Tiger Woods, Vanna White, and Kobe Bryant.

I was healthy my whole life, and then I never expected this. I went to bed normal, I woke up not normal, a big shock. I thought I would get better real quick, and I didn’t. I put my faith in doctors, but they don’t know. I saw doctor after doctor after doctor. My faith in them has waned quite a bit. I don’t have any answers right now. I don’t know when I’ll get better. There’s no place for young people like me. They just shove them in nursing homes. The system doesn’t get it. They don’t have anyone they love who is sick. If they did, everything would be different. But it isn’t.

My typical day – lying down, watching TV, nothing else for me to do. I feel disabled. The nursing home is really loud. They put 2 people in 1 room, divided by a curtain. You can hear everything. Residents are loud. The people who work here are too. That’s why I wear headphones 24/7 – to drown the noise out.

I have PCD, paraneoplastic cerebellar degeneration. You’re either born with it, or have cancer and it develops. It affects the nerves and motor skills. Now I can’t move my legs. I used to be a runner. I used to talk normal, and now my speech is really slurred. I used to see normal. I used to be an optician and now I see double. I’ve kept one eye closed for 3 years. I’ve been to 3 optometrists and 1 ophthalmologist, and they don’t have the answers either. No answers, feeling hopeless. It’s hard to fight when I don’t know what I’m fighting.

I’ve tried everything. I’ve done stem cell, chemo, Rituxan, klonopin, Sinement, supplements, surgery, prayer, you name it. Nothing seems to work. I started my own website –https://fundly.com/healingkamala.

I used to be able to stand. Now I can’t move my legs. It’s a very rare condition – only 5 people in the USA have it, and I happen to be one of those lucky ones. I moved here to be near my parents. They’re getting older, and want to do everything possible, but how can they – they’re in their 70’s.

I used to be so independent, and now I depend on everyone for everything. Now I have to depend on others for bathing, feeding myself, things I used to take for granted and would do every day.

By Kamala, in her own words