Reflection: My 3 Year Anniversary with a Lyme Diagnosis

Last week was my 3 year anniversary of being diagnosed with late-stage Lyme disease (better called complex chronic illness) which includes the unlayering of what "chronic Lyme" consists of. For me, it's the many co-infections that come alongside a persistent infection of borreliosis due to an unmodulated immune system, one that has also triggered dysautonomnia and autoimmune disease.

I had no idea how complex my life was going to get. I was deeply relieved when I was finally diagnosed, but the truth is: that was just the beginning. The truth is, the recommended treatment didn't work for me.

Emerging science (from respected researchers, one being from Johns Hopkins University) has implicated that antibiotics long used to treat tick-borne illnesses actually DOESN'T kill the resilient Lyme bacteria. My current team of alternative doctors have known this, but we're still waiting on everyone else to catch up.

My disease is still under-researched and underfunded. It is still polarized and politicized.

So I stand here. Still. Three years after beginning treatment. Nearly four years after becoming disabled from a life that was deemed "functional."

I stand here to share pieces of my story. Because I want people, my peers struggling alongside me, to have hope and feel less alone. But facts are facts, and we've been left behind by our medical system.

We are our own researchers, advocates, guinea pigs. We are left with inaccurate testing. We have disbelief from doctors. We have scientific proof on our side, but we're forced into this unnecessary waiting game.

Me, and hundreds of thousands of others, are waiting for a cure. While government money gets poured into Zika, I have dozens of friends who are fighting on, pouring their money that they don't have into expensive treatments because it's our only hope for sustained relief. Despite the fear it brings... Despite the fact that we have no guarantees... Despite the fact that untreated Lyme is tied to the more *publicly viewed* serious diseases of MS, Alzheimer's, Parkinson's, and ALS.

I still believe I am healing with the help of my team of doctors. I credit holistic medicine. I can function at higher levels - and do more than ever...

But it doesn't mean that many of my days aren't spent underneath my covers in the dark (literally and figuratively). It doesn't mean that my unrelenting symptoms don't force me into the ER, like they did last night.

But I believe in healing. I believe in change. I believe things will get better. I have to.

Coming Alive (Part 1)

I know what it feels like to be sad, to feel loss, that pang-in-your-chest-knot-in-the-stomach kind of sadness. The kind of sadness that brings on real, physical pain. 

But what I had grown even more afraid of was my visitor of numbness. A side of depression that isn't talked about as much. An emptiness that threatens your aliveness. 

I think many of us have had moments when we look into the mirror and question who we see. We ask "how am I alive right now... why... am I alive right now?" And if you haven't, I don't know, maybe this article isn't for you.

I'm talking about the bitterness that you can't quite place, because rather than actually feeling, it's the absence of emotion - it's the absence of life. 

I've suffered from clinical depression and generalized anxiety disorder (along with bouts of mania and panic disorder) for much of my life, but I was officially diagnosed when I was 19. Honestly, I just figured that's how everyone lived and felt. It took me 19 years and a trip to the ER before I realized, oh -- maybe this isn't normal...

I remember going to the university therapist, the first mental health professional I'd ever met. I remember saying, "no matter if everything is going 'well' with my life, I can't imagine what it would feel like to be happy - truly happy." I would think about my future and be incapable to visualize what 'being happy' even looked like.

Just writing that breaks me. I was on the brink of entering my 20's and I, many times, just wanted to die. I don't know why. I couldn't explain why I felt so empty and so alone -- I had great friends with a wide social network, a loving boyfriend; I was attending (and educationally thriving) at one of the best public universities in Texas. But I also didn't realize how physically sick I was back then. I do remember sitting in my closet, sobbing, telling my boyfriend at the time that something was very wrong with me. I told him I thought that I was sick, but I didn't know what it was. I remember thinking, "it's like a ticking time bomb... one day I'm going to get really sick. I'm going to get cancer--or something..." Yeah, it sounded crazy, but I guess I wasn't too far off. Because about 3 years later, my body collapsed with what we now call Late-Stage Lyme Disease (to me, known as Complex Chronic Illness/MSIDS). Maybe it was my intuition saying "WAKE UP! Listen to me! This is going to get very bad!" But, who has time to listen to your body when you're trying to get that 4.0, build a resumé in a time of economic decline, and -- to be honest -- party through the weekends?

I was immediately placed on antidepressants and anti-anxiety medications to help quell my panic attacks. My episodes were so extreme that I often couldn't go to class. The attacks would come out of nowhere -- I would hyperventilate; my oxygen levels would decline... I would lose feeling in my limbs; my chest would hurt so severely I was sure I was having a heart attack. Sometimes I would black out. My best friend Amanda would skip class with me and crawl into my bed so I wouldn't be left alone. We'd watch The Breakfast Club and Pretty in Pink on my computer. She'd bring me food, and we'd have hot tea. I don't know if I would've made it through that semester without her. 

The extreme panic disorder came and went throughout my twenties, but there was always an underlying presence of anxiety in many parts of my day. I was off and on pills, and in and out of mostly unhelpful therapy. Honestly, our culture has made living on Xanax, coffee, and very little sleep perfectly "okay". And while more and more people are speaking out about mental illness in a variety of ways, which does help de-stigmatize it, I was living life on the edge of a complete collapse. I thought, well, this is just how I have to feel. I can't be weak... And like I've said before, there is often a perceived strength in people who just push their way through their lives. I was prepared to let the world harden me, and I was going to carve out a life for myself based on society's ideals of what I should be at twenty-something years old. 

In my mid twenties I began noticing the other side of depression - the side that brings apathy, desensitization... Sure you're walking around, you're "present," but your spirit is paralyzed within you. It inhibits your ability to give and accept love. It traps you in a box where you're distant from everything that is breathing and alive. You're existing, but that's about it.

Every now and then, maybe you'll catch a glimpse of a spark -- something will give you goosebumps, someone will make you laugh until you cry, or maybe they'll hold you close enough and long enough to where your walls will start to come down. Now let me clarify, so much of this is subconscious. No one wants to be unloved. No one wants to be a shell. No one wants to be empty and alone.

I didn't have a word for these feelings until about a year and a half ago: Depersonalization. I'd find myself in situations and actually feel like I was watching myself, rather than being inside my own body. My actions were sometimes entirely separate from my thoughts. Visually, I felt like I saw life with weird, fucked up, distortions. Like I was watching the world, without being part of it. Like I was trapped behind a thick glass, air running low, suffocating with my own breath.

I haven't really shared many of these feelings publicly, so I do apologize if it comes as a shock to some. But these feelings would come and go. For weeks on end I wouldn't feel much, and then suddenly, I'd be on the beach, toes deep in the sand with winter ocean water splashing up on my knees and I'd snap back into my body. "Ok, maybe I can do more than just exist," I'd think.

I've been terrified to say that maybe, some of these feelings have left me for good. I'm scared because they've always found a way to come back. I don't know what makes this time different, but I know I didn't get here on my own.

However, what I am about to share is important: Some of these feelings are okay. Being comfortable and unquestioning is a luxury to those who plan to stay where they are. And chances are, you're not one of those people. This is part of our soul's evolution. Sure, at times, these places we find ourselves in are dark, lonely, confusing, and so uncomfortable you want to crawl out of your skin. But please, just hang tight, because I promise you, it's not forever. 

Now, to feel anxiety, and experience depression, depersonalization, or anything along those lines is not your fault, and I'm not telling you to just get used to it. What I'm telling you is this - just listen. Listen to these messages your body is communicating to you. Become intensely "okay" with being in your body -- feeling or not feeling a variety of emotions -- and simply, just be ready to listen.

I didn't reach this without professional help, and I'm still navigating my way through it all, but now I know: aloneness doesn't have to exist for me, or for you. 

As we evolve into higher levels of consciousness, we'll continuously reach places of "holy fuck this is so uncomfortable!" but I really believe it's those moments that force us to pick up our roots, and find better suited places that support our personal growth.

Am I happy? Sometimes. I'm often still very sad. Sometimes, I'm really damn angry. I still have those moments of "whoa, who am I?" But we are not one-dimensional beings with a small range of emotion. We are meant to feel. 

So, keep going. Hold on to those moments that give you life, goosebumps, tears of joy and even tears of sadness. To feel is to be, and finally, just maybe, I'm coming alive.

Part II coming soon.

Coexisting with Chronic Pain

There is a quote I've been thinking about a lot the last few days:

"Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me." - Alphonse Daudet

I've learned to navigate some parts of my life while living with chronic pain and other symptoms, but I don't think any of us ever truly get used to it. For many, pain seems to find a way to feel new, even when it's always been around. It's surprising that way.

Mine has been here for a few years now. Some days, it's just louder than others.

It creeps back in slowly -- slithering through each crack in my body, all the places I've once been broken. It comes without notice. It comes unprovoked. 

"Oh. It'll just be one of those days again," I'll think. The kind of day I sink a little deeper into my corner. I'll look for distractions, but few things will keep my attention. I'll forget to text back. Or I'll cancel my plans. I'll say, "I'm sorry, but I can't today." I'll become distant. I'll disappear for a little while.

Did I do too much? Walk too far? Stay up too late? Eat the wrong thing? Maybe.

But, truthfully, it doesn't matter because even if I play my cards just right, it finds a way to return.

"This is not your home."

I can't remember the last time I didn't have pain. Maybe sometime in 2012. There are days when I can keep it quiet, but there are days when it screams.

I say, "I am not okay with you here." But it tries to stay.

"I hear you. But can you leave now? Again, this is not your home."

I hear you.

But now, I guess I need to start listening. Because this - this I know: Pain, you being here, isn't a choice. But suffering? Maybe suffering is. 

I won't let you push me back into the shadows. I'm bigger than you. I'm bigger than that fear. Bigger than this doubt.

For now, we will coexist, and I will listen. I've made space for you, but I will keep going. And one day, you'll stay, and I'll be the one who's moving on.

So you just need to know:

This is never going to be your home.

Portrait Photoshoot with Danielle Shull at Oak Harbor (Whidbey Island)

Today has honestly been a very difficult day for me. I've been both emotionally and physically challenged with my current treatment protocol, and ya know - just life and all of which it brings. But this evening, my new friend Danielle shared the shoot we did back in June on her website, along with my story.

I remember driving back on the winding roads as I wrote this little note to her, a note that she's now published:

This makes it all worth it. 
This is where it's at.
Every time we step out and allow ourselves to be vulnerable,
the magic shows up.
Thank you for allowing me to step out. I have always struggled with wanting to move past or escape from my current reality. Days like today make me feel alive again—they make me feel safe and at peace with where I'm at—even though my pain isn't gone.
You've already taught me so much in just one day. Thank you for sharing your day and pieces of your life with me.
Love,
Melissa
6/29/16

Today, my pain is certainly not gone. Today, I spent my time either on the bathroom floor or curled in bed. But you know what? I keep going. Blind faith? Some may say so.  But I keep going because I know. I know that I've been able to let go of some of the fear that's been controlling me for my years with illness. I keep going because being vulnerable and showing up allows life to work its magic for us.

See Danielle's site for the full story + photos.

Here are a few more of my favorites:

All Photography By Danielle Shull