Perspective: Get some! (pt. 1)

As of now, I was supposed to be just getting back from my shark diving adventure. I was going to Guadalupe Island, Mexico to cage-dive with great white sharks for 5 days!! I was so damn excited!!

But then, it got cancelled.

Apparently, there is some government issue going on between Mexico and the United States and we are no longer allowed in their waters for the time being. So, my shark trip was cancelled.

To say that I was devastated may sound dramatic, but you need to understand why this trip was so important to me.

This trip was going to be a symbol of “doing it scared” and living your life to the fullest, even when you are terrified. Thinking about this trip was keeping my mind occupied and off the fact that my mom’s anniversary is coming up. When I would get overwhelmed with sadness about my mom, I would imagine myself being in that cage and seeing 20 ft. long great white sharks just swimming by. That image sent chills down my spine, and it still does. It may sound weird, but it just helped me not be so damn sad. This trip was keeping me going.

Then it got cancelled. And I didn’t realize at the time how badly that was going to affect me.

I cried for days. I went down a rabbit hole of all the sad things; thinking about my mom dying, my last words to her, Theodore missing her, how sad my family is, etc. It was just never ending. I felt like I was living through her death all over again and it was killing me.

Grief is really an interesting little bitch, isn’t she? Such a typical woman. She can never make up her mind and right when you think you’ve made it through, she comes back into the kitchen bitching and moaning, and ready for round 2.

It still constantly amazes me how tricky grief is. I really don’t feel like this is talked about as much as it should be. When someone dies, you are weirdly expected to just move on and keep going. And, of course, I know that that is the only option. I know you have to keep going. We all know this. But, sometimes, carrying on, trudging through the heavy clay that is grief stuck on the bottom of your boots, is very, very difficult. Some days it’s just all too heavy.

And, since we all know that misery loves company, the spiral began and the heartache ensued.

While I was crying, grieving my mom, my hand started shaking again. I couldn’t get it to stop this time and sheer devastation took over.

For those of you who are new here, I have lupus and a new random side effect that has showed up is a tremor-like thing in my left hand. And I’m left handed. So there’s that.

Anyways…

I laid in my bed crying the cry of a lost little girl. I wanted my mom. I was mad at my body. I was mad at my disease. And, damn it, I want my fucking mom.

What most people don’t know about lupus, is stress is a huge cause of flare-ups. So, when I get upset and cry or have anxiety about something, that usually triggers a flare-up. So, now, instead of just having a good cry and moving on, I am on bed rest with a full-blown flare-up.

Last week, I was in the hospital again for lupus. And I’m sure some people are going to read that and reach out to me saying, “What? You never told me you were in the hospital?!”

I know. I usually don’t tell people when I’m in the hospital anymore because it happens so frequently that I just realized it doesn’t need to be brought up everytime just to make everyone else worry. So, I go there alone, get my meds, rest, and then get released. This has become a part of my “normal”.

But, I can’t lie to you. I am struggling with it all right now. I am really sad about my disease. I feel so defeated and exhausted. I hate that I can’t just go have a good cry and move on. I can’t just go into my closet, have a good cry, and then pull myself together. No. When I have a hard cry like that, I break out in hives, my kidneys swell, my joints swell, I get bad hot flashes, the migraine comes, and now my hand tremors. The lupus struggle just never ends.

For example, I had professional pictures taken the other day by a very good family friend. We had a plan to go outside around town and take fun pictures. We were only out there for barely 2 hours, and I got heat stroke. I started sweating profusely, my eyes glazed over, and then I proceeded to throw up. Obviously, we had to stop taking pictures. I am just hoping that at least some of the ones we took turn out!!

After that, my photographer friend mentioned that she didn’t realize how bad lupus affected me. She said how I just don’t talk about it all that much and how bad it is. She hugged me. And just validated me. And I’m grateful to her for that moment. It was an embarrassing moment for me. You guys, when these happen, I sweat to the point where my hair is completely soaking wet, like fresh-outta-the-shower, mmmmkay? And she just gave me a hug, made sure I was ok, and didn’t judge me or my stupid disease.

The most frustrating part of all these feelings, is that it really feels like we’re not supposed to talk about it. Even as I am typing this, I have these voices in my head saying, “stop whining, stop feeling sorry for yourself, stop being negative, etc.” You just feel like such a burden. You don’t want to bitch and moan about the pain you are in. But sometimes, it just needs to come out. Sometimes I just want to scream from the top of my lungs, “THIS ISN’T FAIR!!!!”

But, that “life isn’t fair” game is a dangerous one to play. That takes you down a bad road that leads nowhere good. And I am such a spiral-type of person that thankfully, due to therapy, I caught this spiral before it got too bad.

Thus, began my desperate attempt to find some perspective.

I am so sad about my mom and my lupus that it is all-consuming. These past few days have caused me to question the point of life. Like, is this it? I just have to cognitively be aware of my body slowly dying right in front of my face? Is anyone ever going to love me again with this disease? And I don’t even get to call my mom to cry about it? I mean, what in the absolute fuck is going on here?!

And then the voices come in again, “oh my god stop whining. You are such a little wimp. Suck it up. Toughen up. blah blah blah”.

See what I mean? It’s like torture. It’s like you just need to vent about how bad it sucks sometimes, but then you feel guilty about bitching about it because you know it could be worse and you really do need to just suck it up.

Back to finding perspective. Obviously, this blog isn’t an easy one to write. I do believe in being positive and trying to be a good example, but I also believe, deeply to my core, the importance of talking about the realness of situations. I truly believe it helps us all feel not so alone.

So, I am desperately searching for some perspective. I need to find something sadder or more devastating than how I’m feeling inside. That may not make sense to some of you but it’s the best way I can explain it. I need to see how other people pulled themselves out of a bad situation and still made a happy life. I need to find some meaning here. I can’t be this sad anymore. I always think suffering in silence is the best way to cope but now I’m not so sure of that. It’s gets awfully lonely. I need to find a way out of this sorrow. So, perspective hunting I go….

Tune in next week for part 2 on finding perspective…I think I’m gonna find some!

Happy Trails,

Em