Let me tell you what my policy is, as a Jew, on whether you wish me “Happy Holidays,” “Merry Christmas,” or even “Happy Hanukkah.”
I truly don’t care.
If you wish me Happy ANYTHING, the only way I will react is to be grateful that you sent me good wishes at all instead of telling me to go fuck myself. Much appreciated.
There is no war on Christmas. Unless I’m a total anomaly, my strong impression is that most people just don’t give a shit. Wish people a happy whatever-THEY-celebrate if you can, or else just do what you want. If you wish people a happy opposite-of-what-they-celebrate just to make a point, you’re a dick. But beyond that, it literally couldn’t possibly matter less.
Can we please go back to worrying about nuclear war and global warming now?
Over the years, I’ve been extremely lucky that I’ve gotten to meet a great many of my heroes. But for twelve years now, there’s one woman who has stayed at the very top of the list of people I wanted to meet: and finally, last Thursday night, I got my chance.
Despite her stadium-filling fame and success, Amy Lee (frontwoman and songwriter for the band Evanescence) is one of the most sincere, gracious, kind, and down-to-earth people (let alone celebrities) I have ever met. There was not one moment where I felt she was “phoning it in” as I told her what she and her music have meant to me over the years. Here was a snippet of our conversation:
Me: I know it may not look like it, but I actually have a pretty serious disability. And ever since I was 18, your music has been one of the only ways that I’ve been able to feel the pain in my own body, but also to be okay with it, and to feel a little less alone. So I just wanted to say thank you.
Amy: (tears in her eyes) Wow. Really? I – I don’t even know what to say. Can I just-
(She gives me a long, warm hug)
Amy: I’m so sorry you’re going through this. But I can’t tell you how grateful I feel that we’ve been able to help in any way. That’s really incredible. Thank you so much for saying that.
We then went on to talk a little shop (along with the rest of the band, who were equally friendly and engaged) about her music and my own show, Safe in Sound, which was inspired by her writing. I turned to go, trying to be respectful of their time, but before I could, Amy reached out to me and brought me in for another hug, resting her head on my shoulder brace, and letting me rest my head on her shoulder. For ten seconds that seemed like a peaceful eternity, she held onto me, and held the space alongside me.
I know I’m just a stranger, and I’m sure I’m not the first stranger to tell her something like this. But in her words, in her eyes, and in her multiple hugs, I really got the sense that she cared. And it meant more to me than I can say. I will never forget that feeling of being not just hugged, but held, by someone I so deeply admire – someone who has changed my life, personally and artistically, in ways that she can only begin to be aware of.
And then I got to watch from eight feet away as this beautiful human transformed into a goddess the moment she walked onstage, and delivered a performance so heartbreakingly raw and honest that I was moved to tears again and again. Watching Amy sing is like watching someone in a trance – she is fully enveloped and invested in every note that comes out of her mouth, every word that comes out of her heart and soul. There is simply no one else like her.
Evanescence’s new album is called “Synthesis,” and while it contains a few new songs, mostly it is composed of her old gothic-rock classics re-imagined to include a live symphony orchestra. As a composer, listening to this album is like listening to my own process of writing a song – different instruments come in and out briefly in the form of ideas, a mild drum beat is established, until finally all the instruments come together as one and blow you out of your seat. I think that this is what Amy was going for, and the reason the album is called “Synthesis.” This album is an artistic representation of the process of writing the song as you go. It is a fantastic and beautiful achievement, and I am so grateful to have been one of the first people to hear it. The album comes out this Friday, and I can’t recommend it enough.
Amy, should you magically ever come across this post: thank you so much for a truly perfect night that I will keep with me for the rest of my life. And for my own fans out there (and Amy?? ;-), feel free to check out the page for my own musical Safe in Sound, which was first inspired by Evanescence’s music.
Today I received a form response from your office reacting to a letter I wrote you several months ago in opposition of your plans to strip tens of millions of people from their health insurance. I just replied to that response, but since I got an autoreply that your mailbox “is not monitored,” I guess this will have to do.
You wrote that, “Despite inaccurate reports to the contrary, these proposals would have all permitted federal funding for Obamacare’s expansion of Medicaid, the joint state-federal program for very low-income and disabled Americans.” You added that the legislation you supported “would have required a state to pay the same share – on average 43 percent – as the state pays for every other traditional Medicaid enrollee (the disabled, blind, aged, etc.). The federal government would have paid the lion’s share of cost (57 percent) for working-age, able-bodied, childless adults,” and implied that this would have been sufficient to meet the healthcare needs of the American people.
You, sir, are a liar.
You know perfectly well that states are incapable of funding health insurance subsidies in the same way that the federal government does (if for no other reason than that states are not legally permitted to go into debt), and that any attempt to do so will bankrupt our very own state. I will do everything in my power to unseat you in your next election, and will be sure to use my blessing of a widescale audience to enlist others to do the same.
I’d offer to sit down and have an actual conversation about this, man to man. But considering your notoriety for hiding from your own constituents, I have a feeling you won’t take me up on my offer. And clearly, anything I say will fall on deaf ears. Speaking of which, if you ever do go deaf, I hope you enjoy the hearing aids that your own government insurance will provide you with. The better to hear the news reports of all the people who will have their lives destroyed or ended because you took their insurance away. I hope you hear every one of those voices, and I hope they haunt you to your soul, if you even have one anymore.
PS: Thanks for your vote today to prevent consumers like me from waging class-action suits against banks and credit companies when they commit negligence or outright fraud; it’s not like we’ve had problems with that recently or anything.
You truly are despicable.
Last night I learned that a fellow EDS advocate and friend recently passed away. Her name was Davina Shober. She was 24 years old.
I did not know Davina well, but as I read through our interactions, I am reminded of her bravery and the grace and optimism she showed during her lifelong struggle to bear the unbearable: a life of endless surgeries, bone grafts, and innumerable other procedures that left her with only one terrible question that is all too familiar to us EDS patients:
“I’m doing all the right things… so why am I not getting better?”
As a public EDS advocate, I receive several emails a week from people who have been thoroughly let down by the medical community and have nowhere else to turn. So they ask me for help and support, which I try to give as much as I can. But not Davina. Despite her unfathomable suffering, Davina’s first message to me was to give me her phone number, along with an offer to help ME if I ever needed someone to talk to. A girl who was suffering a lot more than I was at the time offered ME a shoulder to cry on, even as her own shoulders were literally falling apart. Take a moment to process that, to be humbled and inspired as I am that a girl who had so very little left for herself still found room to give. And give, and give.
Please do not send me your condolences: I barely knew Davina, and as sad as I am about this, I don’t need or deserve condolence. All I ask of you is this:
The next time someone tells you that they are struggling with an illness – listen. Even if they look fine. Even if you’d rather talk about something else. Don’t condescend, don’t ignore, and please: don’t disappear. You may feel certain that if they just got out of the house more, or “stopped dwelling on it,” or tried this great holistic diet, that all their problems would magically disappear. But no matter how certain you are, and no matter how well-intentioned, you have no idea whatsoever what’s going on inside of another person’s body. But that person knows. And if you truly love them, you can start by trusting them.
EDS is a terrible and cruel disease that decomposes you from the inside while you are still alive. It is degenerative and it has no cure or even any proven treatment. The horrors that typically come with old age become known to us in our teens and twenties; we look perfectly normal on the outside, but an MRI or ultrasound will quickly reveal all of the rips and dislocations and fractures and inflammation, with all the relentless and soul-crushing pain that comes with them, often without one single area of the body spared from the damage. It is harder and more heartbreaking than I could ever adequately express, losing pieces of our bodies, losing pieces of ourselves. It is devastating to us, and to everyone around us.
I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, “I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.”
We lost a great warrior in Davina. Please help to carry on her legacy, to give to others even when you feel you have nothing left to give. You might change someone’s life; you might even save it.