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.
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. 🙂