Perspective: Got Some! (Pt. 2)

As I’m writing this, I am sitting in Central Park, New York City. For my first birthday without my mom, I flew myself out here over the weekend to find some perspective.

And boy did I find it.

I realized that I was going to be there for the actual 9/11 Memorial, on September 11. So, I focused on that, and that only.

Someday at a later date, I will explain the real reason I decided to go to NYC, but for now we will call it a hunch. I booked my ticket with nothing planned, except 9/11 tours, and flew into Newark only a few days after that. As I mentioned in my previous blog, I already planned a shark trip, but that got cancelled. So I just reused the ticket for another destination.

My 9/11 Memorial tour was on Saturday, September 10. It was only supposed to be 2 hours long, but you can stay as long as you want. I was there for 6 hours.

I looked at every picture. Every name. Every artifact.

There’s no way I will ever be able to remember all of the roughly 3000 victims that are represented in this Memorial, but when I was in there, I respected each and every one.

When you walk through the multi-level tragedy, it is bone-chilling. Not a word is spoken. The only sound is muffled sobs and soft sniffles. What’s so interesting though, is I don’t remember seeing any signs telling people to be quiet or not to be on your phone. No one had to be told. This place is just so hallowing and sacred, you feel like breathing too loud could be disrespectful.

What’s also so heartbreaking, is these were all real people. I know there are conspiracies out there and all that, but the reality is, real people suffered during this attack. And for most of us, we just saw it on TV, like a movie. We weren’t there.

And let me tell you, being there, is unreal.

Now, I have been to New York before. A few times actually. Fun fact: I sang at Carnegie Hall when I was in high school with a choir along with some other KHS students. It was the experience of a lifetime.

While we were there, we toured Ground Zero. Back then, it was only a few years after the attack of 9/11, so it was still in ruins. Nothing was being built yet. It was still dusty and had broken pieces of building everywhere. Granted, they had obviously cleared out all the wreckage from the towers, but it was still just so empty and desolate….and eerie. I mostly remember the cross. That famous cross they found at the bottom of Ground Zero. It was formed together by 2 pieces of steele, and part of the one of the planes, I believe. And firefighters discovered it at the bottom of the wreckage, that they began calling Ground Zero.

They had this beautiful cross displayed in front of Ground Zero as a representation of America’s faith and resilience, and ultimately, hope.

Well now, they have moved that cross into this museum. It was very humbling to see that cross again. To see what the people of NYC built after that horrible nightmare. How they used that cross as a symbol, and now how it’s proudly displayed in one of the greatest memorial museums I’ve ever had the blessing of experiencing; totally representing the process of growth, prosperity, and American grit.

It was just such a symbol of what can be accomplished. What can be changed. How people can persevere. And how we can be strong again.

Outside the museum, they have these memorial pools around where the original towers were. So, as you are standing there, you almost can picture what it was like that day. Almost.

For those of you who haven’t been to New York, or who would never plan on going because my God there are so many people there, the buildings there are indescribable.

When you stand at the base of them, you can look up and never see where some of them stop. They grow through the clouds. They are massive and beautiful, and terrifying and magnificent.

So standing at those memorial pools, and looking up into the clouds imagining how tall those buildings must’ve been. How they both fell in just seconds. Imagine…all of that coming down…in seconds.

It’s impossible to imagine, even as you stand there. I honestly don’t think our brains will allow us to comprende that trauma. It’s just too much to bare. All those people. All that terror. It’s unimaginable.

However, it changed something in me.

While I was in New York, I just walked around for hours and talked to strangers all day long. I spoke to hundreds of people. Some of them gave me permission to record them, some did not but still shared their story with me as I wrote notes.

I don’t even know where this was coming from, but something inside me was just saying you need to connect with these people. So, apparently I just decided I was a now a reporter and got to work doing my interviews.

It is not lost on me, or my tribe, what was happening here. I was desperate for something. I was desperate for a meaning of life. What’s the point of all this? My lupus? My mom? So many other things…I was craving an Eat.Pray.Love. moment, desperately.

The hard part about lupus, or other autoimmune diseases I’d imagine, is a lot of outside people have these unwritten rules for you. Like you are supposed to be doing things on their timeline, and that is just not how it works. I realized on this trip that I have been in severe denial about my lupus. Not that I didn’t have it, but that I didn’t have it as bad as I do. I honestly thought I could fix it myself, with diet, exercise, herbs, vitamins, lifestyle, collagen, etc. You name it. And I thought I could “positive-think” my way out of it. I just didn’t want to believe that I was sick enough to need so much help.

So, I have been lost. Extremely lost. And, unfortunately, when I am lost, I alienate myself, because that’s how I process. I need to grieve things the way I grieve them, and believe me, there is no specific timeline for when that happens.

This happened for me while I was in New York.

The more and more I spoke to people and absorbed myself entirely in this terrifying, hypnotizing moment, the more and more my life was forever changed.

Here I have been just wallowing in my illness and my mom’s death. And I hide it really well. But I’ve been lying to you guys. Honestly, I’ve been lying to myself. I didn’t want to believe I was really sick, and I wanted to believe I could save myself. Then, when that wasn’t happening, I started to feel so defeated, over and over and over again. So, as I mentioned in my previous blog, I needed perspective.

Now, mind you, you all need to remember that I feel things VERY, VERY deeply. I have a lot of strong emotions so this kind of really tragic stuff, to me, can be very healing. To some of you, that’s not going to make sense. And that’s okay. And to some of you, you know exactly what I’m saying, and that’s also okay.

I needed to find something sadder than how I was feeling. I needed to find other people who have risen above a horrible nightmare and still lived a happy life.

And I found it.

The stories these heroes told me still make me cry. What they experienced that day was horrible. Some still can’t talk about it. Some still cry just as hard. And some are still in complete denial.

It’s been 21 years since this happened to our nation, and there, on that day, in those moments, it was happening all over again for all those people.

I was extremely blessed to get the chance of a lifetime, and I got to go down the actual family member memorial. I got to meet the real families of the victims and the real officers/soldiers/firefighters/HEROES,etc. who were there that day and saved people.

One sargeant told me something that I will never forget. He said, “Everyone thinks it’s cool to be a hero. But I don’t think people really realize what it takes to actually be one.” As he said those words, the pain in his eyes screamed at me. He then told me he lost over 30 men that day. And he survived. He choked up when he said this to me, “It’s hard to feel like a hero, when the real heroes are these guys,” as he points toward the names on the plaques representing those who died. After he made that motion, he turned back to me, buried his face in his hands and cried like a child.

As I kept writing down all these stories, the words just kept flowing. I just kept writing and writing. And before I knew it, I had a book.

I did it you guys.

I wrote my book. And I’m so proud of it.

I’m sure I still have major tweaking to do on it, but the content is there.

In my book, I reveal the real reason why I went to New York, which includes one of the victims on one of the hijacked planes, his widow, and my mom. It’s an incredible story and I can’t wait to share it with you.

The weird thing was as I was writing, I just kept thinking to myself, what is happening right now? Why am I writing all this? And it just kept coming and started telling a story.

I reveal the real stories from real survivors that I met, the firefighters who I got to meet up with at a local bar to interview, and a woman who was recently on the phone with her daughter as she watched the plane she was on crash into the tower.

I also talk a lot about the many struggles of lupus, going through that grief, how it affects others in your life, and all the extra pain involved, that you didn’t expect, especially with your mental health. It really is a trip.

It is very emotional, real, and raw. But it is incredible. I wrote it because I just wanted to share it with someone else who may be struggling and falling into the “feeling sorry for myself” trap. I’ve been there, and this last time, I started getting comfortable there. And your soul dies in your comfort zone.

So, I needed a jump start. I needed some meaning. I needed SOMETHING. And hearing these people talk about what they experienced that day, and how they’ve moved on from it, just woke me the fuck up. If they can survive THAT. A fucking terrorist attack??? I can survive this, dammit.

I am aware that this is extreme. But, have we met? Once again, I feel things DEEPLY, so I needed to find something EXTREMELY SAD to balance me out.

I am 100% aware of how insane this must sound to people. But it is something I had to do. I needed it. And for the first time ever, I was brave enough to go.

After I got home from my trip, I started piecing together that I might actually have a book here and I just couldn’t make sense of it. This was not the direction I wanted for my book. I’ve dreamt of writing a book for a long time, and so has my mom. (Remember this statement for later on in my book. *winky face) But this isn’t what I thought it was going to be about so I was still just in shock of where this was coming from? I wasn’t TRYING to write a book. I sat down, in this beautiful city park, to experience being a “writer” in NYC, almost basically identical to Carrie Bradshaw…..duh. I just intended on writing this blog, but once I finished this blog, the words still kept coming…and coming. It’s almost like I wrote out my feelings as I was healing and, apparently, I had a lot of healing to do. Still, as the pages began to fill up, I still didn’t know why I just kept writing and writing. Like, why am I writing my book write now? This wasn’t the plan!

Then I got extremely sick, again.

I should’ve known this was coming. Usually, when I travel and come back home, I get sick. This is EXTREMELY COMMON for autoimmune-compromised people. I’m sure it’s natural to have a reaction similar to, “Well, if you get sick every time you travel, then why don’t you stay home?”

Fair question.

Honestly, because the flare-ups happen whether I’m at home, or not. So if I have a chance to see and experience new things that make me feel alive, and get sick every time afterwards, I’m going to keep doing that. We do hard things, and we do things scared. So, I’m going to keep living a fabulous life.

Well, this flare-up was extreme. My face was in such intense pain, it hurt to move it at all. The funny thing is, while I was in my hospital bed, gowning up and getting checked out, they were rushing things and trying to get this IV going. They kept asking me how my breathing was and I kept saying fine, but I also kept weirdly clearing my throat. It’s like there was a tickle back there that slowly started to get worse, but I could breathe just fine. They constantly kept asking me how my breathing was, and I just sat there like it’s ok. I honestly wasn’t even panicking. The medical team was way more worried about me than I was.

Then something hit me. I am so desensitized to this awful disease that I try to downplay it a lot or try to “positive talk” my way out of it, that I really think I had just made myself believe for so long that I wasn’t “really sick”, until my throat started to close. Thank God, those nurses and doctors knew what they were doing, constantly asking how my breathing was, rushing to get an IV in, etc.

And I don’t say rushing in a bad way. It was god damn impressive watching these heroes work too. They didn’t miss a beat. They still laughed with me and held my hand, but man were they cruising to get me hooked up to some meds. My face got so swollen at one point, I almost didn’t look myself anymore.

I posted a video from my hospital bed on Facebook updating everyone after the episode passed and my face had calmed down quite a bit, but the truth is, I had to put a little bit of makeup on for that video. I’m not ready to post how bad my face really was that day. I’m still deciding if I’ll be brave enough to put it in my book, but I guess that’s the point of all this, huh? Do. It. Scared.

As I was in the hospital, it hit me. My mom was with me on my trip. I could feel her. And a lot of what’s in my book, I swear to God IS her! It’s really cool. But I think my mom knew my sickness was getting worse. I’ve had to scale back from work for awhile, and take some serious time to figure things out.

So, I think my mom helped me write this book so I could share my story with the world and hopefully help other people find their way out of a darkness too or find their own perspective, or hell, even inspire someone to go on a trip totally by herself!! Trust me, it’s worth it!

But obviously, I think my mom knew it was time for me to hopefully maybe start my career as writer, at least until I can get back to my original business, with bells on!!

I didn’t know I was writer. I truly didn’t know that. This all just started coming out of me. But now, I see the power of writing, I’ve experienced how healing it can be, and I just simply like talking about hard things so people don’t feel so lonely.

I am hoping you all want to read to my story because it’ll touch your soul and make you feel a little bit more appreciative of things. That’s what it did for me anyways. It changed my entire perspective, on everything. It was the most spiritual, cleansing experience of my life, and I hope it touches you, the way it did me.

All in all, my trip to NYC, reset me. I came back home stronger and finally ready to accept my disease. In New York, due to the Memorial, I weirdly worked through my stages of grief. Hard. I cried so hard in that museum I had to stop and use my inhaler several times. And I have no shame about it. It was the saddest, most humbling and beautifully gut wrenching thing I’ve ever seen. And I go into great detail in my book; everything I saw in there, all the people I spoke too, pictures of these people, and recordings from them, dealing with grief, lupus idiocracies, mental health, and finding yourself.

Mostly, I appreciate everyone’s kind words, prayers, offers of help, and continued support. I read every single comment and message and take them to heart. My village is so damn amazing and you guys have no idea how much you have made this struggle so much better.

I am finally ready for Mayo (or whatever God has planned for a center), and I will write about that whole journey. You can’t force someone to be ready for this kind of stuff, especially when you’re as stubborn as I am. (I can feel my mom rolling her eyes, saying no shit!) But, I am ready now.

And I’m ready to fight. So, put your dukes up, Lupus Linda. You’re fucking with the wrong bitch.

Happy Trails,

Em