September 16, 2005

We all have days in our lives where we look back and think “wow, my life headed in a completely different direction based on the events of this moment”.

Sometimes it’s good, sometimes it’s bad. Like the day we met a life partner, or the day we received a serious medical diagnosis, or the day our child was born.

These days make permanent imprints on our memory; minute details in our otherwise forgotten time in our lives.

I was very ill on September 16, 2005…more ill than any doctor or test could ever describe. Not hours away from death, but perhaps days without treatment.

I had a disease wretching the inside of my brain, eating inside the very foundation of what makes us who we are, what allows us to live, what enables us to function.

I could barely talk. I had a doctor’s appointment that day at Cedars-Sinai–the movie star hospital I had only read about in news stories about celebrities giving birth, never a place I thought I’d ever set foot–and in preparation for this doctor’s visit, I typed up a piece of paper, a three page document outlining the horrors of what I had been experiencing the previous six months.

Outlining my descent into hell.

It took me hours to write this document. I could barely put together a sentence, let alone a paragraph.

I remember rereading it back then, thinking how normal the words all looked on the page. How those words revealed nothing about my struggle to actually write them.

It was like I was slipping into a coma, slowly losing my ability to connect with the world around me…horrifically drowning underneath a maze of cognitive malfunctions.

I could barely stand, I could barely walk. In addition to an inability to talk, I couldn’t muster any kind of ability to effectively communicate with any normalcy…formulating a coherent thought was an intense struggle.

I was drowning.

Screaming, drowning.

I sat in this doctors office for over 30 minutes SCREAMING to God in my mind for someone–anyone–to come and help me.

I had a two year old. I had a Hollywood career waiting for me. I had a life I wanted to live.

I didn’t want to die.

I’ll never know exactly why the story played out the way it did…I’m not even sure if it’s finished. I think it’s finished, everything in my smart normal brain tells me it’s finished, but living with a serious debilitating genetic disorder (that requires a lifelong dependence on medical care),

means any story between me and another doctor is never truly over. While I’m alive, I am very dependent on help, so I take the help wherever I can find it.

I wish I had known that on September 16, 2005. I think I knew it somewhere in my mind–I had had strange issues with infections as long as I could remember, but I just chose to forget most of them.

On September 16, 2005 I was normal–just a normal person trying to get back to her extraordinary life. In my mind, I was experiencing a horrifying–but temporary–set back…

It’s been a lot of work, a lot of time, and a shit ton of money to keep me on the planet since September 16, 2005.

Am I grateful to be here? Grateful? Grateful is a word you use when you forgot your wallet and someone buys your lunch, or when someone mows your lawn when you’re ill.

There isn’t a word in any language to describe how I feel to still be on the planet.

I was at Cedars-Sinai yesterday, September 15, 2015 getting an ultrasound, and I ended up having this life changing conversation (for her) with the receptionist checking me in.

Then I ran into her on my way out, so we talked a little more.

She said she was blown away by what I said to her when I was checking in. She couldn’t believe the words coming out of my mouth. She uttered how grateful she was I said what I said.

She said how amazed she was (confused?) of the words that came out of my mouth. Perhaps she was amazed that I cared enough, about an absolute stranger, to say what I felt about her and her life.

All I could do was look at her,

“I am not supposed to still be here. I am only here because of the love and support of many people over the years. Each day–each moment–is a gift from God, and I use that gift to do whatever I can to help anyone I meet in my path.”

I don’t know if she was expecting some kind of special remark about her specifically, but I live my life this way for everyone, and she just happened to be the person I met that day.

Thank you Elevator Man. I know you stuck out your neck for me. I know I bit the hand that fed me. I know you tried to tell me what the limitations were for what you could do for me in this lifetime, and I just stubbornly refused to accept it.

I can’t trivialize how I feel by making some trite comment…if I ever saw you again, I’d probably tease you a little for becoming this hot shot Hollywood doctor, because I know in your heart you actually don’t give a shit about money.

It wasn’t your choice you were born into it. I know it’s sometimes felt like a noose around your neck too, but I’m proud how you’re using your status and wealth to do a lot of good for a lot of people.

Don’t forget to do more good for yourself. Write that novel. Just publish it under a fake name. No one has to know about it. Write it for yourself. Write it for your soul.

I still miss you every day even though you’ve long stopped missing me. I’d love to give you some shit about a lot of things…geezus Christ you have no idea how right you were about me (“I think you need to go to a research institution”), in a lot of ways. Holy fuck

Maybe one day. 🙂

Thank you.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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