Chronicles, Life, Love, Personal Development

A Brave New World

I like to think that we start over with each new year, like we have a second chance to make things happen for ourselves — to learn and to grow. Last year,  I thought it was all about the healing — both physically and emotionally; I thought that the physical pain was behind me with my gallbladder surgery and that I had finally learned to let go of  a grief that was keeping my heart on permanent lock-down.

I didn’t know then that a nightmare was just beginning; I could never have imagined the hell I’d go through, the suffering that I and my family had to endure from this disease. I could never know how much there was to lose…

…and everything I would gain instead.

I wrote this last year:

I didn’t expect this past year to unfold as it did, with its challenges and changes in this never-ending story of life, but maybe life is sweeter that way.

Maybe the tears that are shed are worth it as you remember how to smile.

Maybe the pain and heartache that seem to suffocate you helps you hold on.

Maybe the darkness shows you where’s there’s light.

Those words, though old, sing more true today than ever before.

When I really look back on 2012, when I see the so-called “highlights” of this past year (thanks to Facebook’s Year in Review) I can really appreciate how the year was filled with such challenges and dreams and how, maybe, I needed one to get me through the other.

 

Goodbye

 

This past year was filled with little moments: a few extra beats of the heart; a love lost and found; a promise to myselfto save myself. This past year I said hello again; this year, I could have said goodbye.

This year, I learned what it means to survive.

But far more defining than the little moments were the big ones, those life-altering ones:

 

Lyme Disease | Gold in the Days of Summer

 

It’s so strange to see them side by side like that — one negative and one positive — knowing that both played such a huge part in my life, that they still do and possibly always will, irrevocably altering my life and changing me in its process.

 One created a suffering I’d never before known — a physical pain, a mental confusion, and an emotional anguish that became a nightmare from which I wasn’t sure I would ever awaken.

The other provided hope for a healing, a reason for living, a purpose for being that guided me like a beacon through those dark days and into a future I once doubted was still mine.

I don’t think I could have gotten through my diagnosis and beginning stages of Lyme Disease treatment without the promise of my book, without that something to work towards, without a dream to cling to. And I wonder if I would have pursued this dream so fervently if I didn’t have the fear of succumbing to this life-altering and disabling disease that strips you of your life even as you try to save your life.

I certainly couldn’t have done either without my family — my very own earthly angels — and the unconditional love and support from friends. That gratitude will always remain.

But now…I’m moving forward in both recovery from this illness, pursuit of my book’s publication, and — most importantly — in healing this broken spirit.

Hello

 

A vision board/dare-to-dream wish list I've created via Facebook to guide me towards more positive-thinking. Lesson of the new year: it's beautiful to believe in yourself and to want the best for yourself.

Life lessons aren’t suddenly learned with each new year. Changes don’t magically happen upon the stroke of midnight. When I look back — really look back at these past few years — I can see how much healing needed to be done and how it wasn’t over despite ringing in 2012 with promises of renewal and growth. No, those lessons slid into the new year and followed me through illness, through fear, through despair, through friendship, through family, through recovery, through hope, and through dreams…

I know it’s not over now, as we step into 2013; I know that the healing will continue. But I know, too, that this is life — this constant continuation of who we are and who we grow to be, each year creating a foundation for the next, each lesson building upon our present and leading us towards a better future.

* * * * *

Last night, I chose to spend New Years’ Eve alone, and although there was a small part of me that was worried that the loneliness would sink back in, that the nightmare of this past year would linger like a shadow I couldn’t shake, the peace I felt was palpable.

I was smiling. I was happy. My heart felt light and free, and I felt strong and brave and full of promise.

I know that things will be hard as recovery continues, and I know that the darkness isn’t gone for good.

But today, on this first day of a new year, I vow to start loving myself instead of hating myself. Today, I stop blaming myself for something that has always been out of my hands; I vow to take control back from this illness that has left me helpless. Today, every wish becomes the beginning of something positive.

Today becomes the start of my brave new world.

 

 

Chronicles, Life

Up Close and Personal

I don’t know how to begin this blog post. I don’t know how to begin because what I’m feeling is so complex and fragile and I don’t know how to get the words out. But these are words that have to be said…

Everyone wants to talk about mental health and illness in the wake of heartbreaking tragedy — not as an excuse, let me be clear that there is absolutely no excuse for this violence,  but perhaps as a way to understand. As humans, we try to make sense of the nonsensical — sometimes in vain, but always a natural reaction. We want to know why, to seek a purpose, a motive, a reasoning. In a world filled with chaos, we become confused, our hearts in turmoil, wondering what led us to this point as we seek out ways to prevent it from filtering into our own lives.

Naturally, the talk turns to mental health. What I’m glad to see is people acknowledging that diagnosis and treatment is woeful in this country, where we still abide by the mentality that those who are mentally ill somehow deserve to be locked up and that there’s no possibility for a complete and fulfilling life. Or,  even worse, they are ignored and forgotten and passed from specialist to specialist who shrug their shoulders and pull out their prescription pads.

Too often, we use the term “mentally ill” as a form of dismissive comfort. Because if someone is mentally ill and we’re not, then we’re not affected, then we can’t possibly understand them and their thought processes and why they do the things they do so why should we try. Why should we bother? They’re mentally ill, so give them medicine and stick them in special classes or therapy and let the authorities deal with it.

We need to remember that mental illness isn’t a choice, we need to remember that even those with diseases are flesh and blood and emotional, human beings. We need to understand that, just as mental diseases are so complex, so, too, is the diagnosis and treatment of each individual. It’s not reliant upon one single person — it can’t be — but rather, it takes a community.

Here’s what I said on a friend’s Facebook post:

How to help a person with mental illness is so complex because the illnesses themselves are complex. And getting help isn’t reliant upon one lone person, but rather a community of those who can adequately address and tend to the problem — this means parents, educators, community members, doctors, therapists, and even  insurance companies (god forbid) coming together to form a proper solution that sees the person — the human being — and the medical/scientific cause rather than putting  band-aid on a set of symptoms.

Mental illness is NOT a behavioral problem. It can manifest itself in behaviorally-related way, absolutely, but that’s not necessarily the disease itself. Encephalopathy is a disease in the hard-wiring of the brain and manifests itself in neuropsychiatric syptoms, which in turn leads to disturbing behavior. I think only once we start studying the causes of these diseases and disorders to understand them, and only once we start treating people as  whole rather than passing them along from specialist to specialist where they get lost in the system, can we really see the changes that we’re talking about come about.

If we’re going to talk about mental health and illness, let’s talk about mental health and illness. ALL mental health and illness. Not just diagnosis, not just treatment, not just conjectures of what we should do or an understanding of the symptoms or what it means for society.

No, if we’re going to talk about mental health and illness, we need to start from the beginning: recognizing that these are real disorders and diseases of the brain, an organ that is just as complex and just as susceptible to illness as any other. We need to find the cause, the root of the problem, because only then can we begin to address treatment.

Here’s where I get personal: I have Lyme Disease and a co-infection of Babesiosis, a malaria-like disease. So what, you say. What does that have to do with mental illness? According to the CDC and WebMD, Lyme means you get fevers and headaches and it feels like you have the flu, no big deal.

Except, no. Lyme Disease is an infectious disease, and when it’s misdiagnosed and left untreated, as it so often is because of a lack of knowledge and an increase in its political controversy, the microbes begin to spread throughout the body, filtering into every organ, including our most fragile: the brain.

What does this mean, exactly? When diseases enter the brain, it causes what’s known as encephalopathy, which can severely alter a mental state. When Lyme Disease enters the brain in its late-stage (which can be classified in as little as a few months to decades after the initial infection), it rewires the brain, wreaking havoc on the neurotransmitters — the natural chemicals that carry out everyday function, that “balance” us mentally, that play a part in the stability of our personality.

Lyme Disease is a disease of extremes, where every symptom becomes intensified. Pain becomes excruciating, fatigue becomes debilitating, dreams become vivid nightmares…So, too, do emotions and mental fragility become heightened. Depression, anxiety, paranoia, obsessive-compulsive behavior, cognitive dysfunction, and, yes, even rage are hallmarks of Lyme Disease.

I’ve experienced these changes, though I didn’t know it until I was diagnosed. When I was in middle school, I had mild OCD. When I was in high school, I was diagnosed with a panic disorder. Last summer, I asked my mom if it was possible I could be bi-polar, so rapid were my mood swings from euphoria to a plummeting depression (we’ve recently discovered it’s Lyme-induced bi-polar disorder). Right before my diagnosis, I had episodes where I felt myself becoming detached from reality, like nothing was real.

When I began treatment, due to the Jarisch-Herxheimer reactions wherein the bacterial germs release a toxin that intensifies symptoms as they die, even more neurological symptoms began to manifest themselves:

My startle-reaction was heightened. I had difficulty with word-recall and sometimes it took full minutes to read a single paragraph because I was unable to focus and understand the words. On one afternoon, I didn’t recognize one of my best friends when she was standing right in front of me. Dreams became so vivid that it took an entire morning to separate the dream from reality. When the nightmares set in, I would wake up believing someone was in the house — I walked through every room, turning on every light, Riley following me curiously and sleepily before I finally stood in the dining room between the the front and back doors, too afraid to move.

Riley went back to sleep.

And, yes, there was rage. Those with Lyme Disease call it Lyme Rage — an unexplainable, uncontrollable anger that fills every part of you. For years before my diagnosis, whenever frustration was heightened, I wanted to act out. I would envision myself going through the house breaking every glass object, throwing plates just to watch them shatter as if, somehow, that would ease my aggression and make it better.

I never did. I was always able to control myself physically, instead lashing out with words at the people closest to me until I burst into tears, not understanding why I was so angry, feeling such guilt for hurting the ones I love.

After treatment began and the symptoms intensified, so did the rage, though I was able to recognize it now, though I was able to tell myself it was just this disease, knowing that I was barely in control of myself, that these germs had taken over my body and my mind as I fought for control. Oh, I wanted to lash out. I wanted to yell at those whose ignorance was blinding; I wanted to punch the guy who followed me around the Dollar Tree singing Spanish songs.

Instead, I walked away.

It almost became a joke in my family: Susan, the most passive, non-confrontational person imaginable, and her Lyme Rage. My brother even gave me his punching bag when I felt overcome with this alien aggression. I think I used it twice.

I never would have hurt anyone, though I know I did hurt people with my words. Instead, I internalized everything…Everything. And in the deepest throes of depression, when guilt became all-consuming, when I thought about what my illness was doing to the people I love most dearly and when whispers that I was undeserving and unworthy of this life and their love filled my heart, when I became so tired of fighting and that need for a break, for some escape from this suffering, turned desperate…

I wanted to harm myself.

I wanted it to be over; I was too weary of fighting, of not being in control of my own body, of hurting. I didn’t want my family and friends to suffer as they watched me suffer. I didn’t want them to worry anymore.

They would be OK, I said to myself one October night when that desperation held a firm grasp on my heart and my mind spun with possibilities. They would be better off…Then, I turned to Riley, who slept peacefully on the floor in front of me, and began crying: he’ll be OK without me.

It was that thought that pulled me from the darkest depths this depression has ever reached. I made myself go to bed, repeating that things are always clearer in the daylight, promising myself another tomorrow. The next day, I drove to see my parents and broke down as I told them what happened.

I needed help.

I like to think I’ve always been self-aware enough to know when I’m acting out of character, when something feels off, when something feels wrong. I was able to recognize the depression and knew I was at risk for suicide, and I made myself get help because of it. I can’t help but wonder, though, what would have happened if I wasn’t aware of who I am, at my core: if I weren’t strong enough or empathetic enough, if I didn’t constantly wonder how my actions will affect others and think of consequences, if I didn’t believe in taking care of each other.

I wonder, what if I wasn’t aware of what was happening as it was happening, if I didn’t know how this disease doesn’t kill you itself, but it kills just the same.

When I think about the bi-polar and how, before I started seeing a psychiatrist who specializes in Lyme and before I started taking medicine to stabilize these moods, any little thing could trigger a swing into either mania or depression, I wonder. Because just like you’re not in control of your mood swings when the brain is altered, neither are you in control with many other mental health disorders when the disease changes your brain, changes you.

Those of you who know me and who have gotten to know me over the course of five years of blogging and social media are probably surprised, though I’ve always been candid about my illnesses — both physical and mental health alike. The thing is, that person who you’ve gotten to know is me. The real me. But illness, specifically one that alters your state of mind, can change you.

It’s why I fought so hard to hold onto who I was. It’s why I’m fighting, still, for the person I am.

I know that others aren’t so lucky. I know that others don’t have that support system. I know that others are so scared because they don’t understand what’s happening to them or why; maybe they’re even unaware of it happening as it’s happening.

I can’t help but wonder…

I am in no way, shape, or form excusing violence here. And in no way am I saying that all mental illnesses are related to Lyme. But I know the damage that these germs do, I know from research and patient stories and talking to doctors  and from my own experience how it affects the brain and changes you.

I know how serious mental health can be, and how out-of-control it makes you feel.

I know that band-aids and prescription refills aren’t cutting it, especially as so many new cases of mental illness are reported each year; I know that dismissing someone as having a mental illness and “just needing treatment” is a cop-out.

I know that we have to have this conversation about mental health.

Let’s begin with “why.”

 

 

 

 

 

 

Chronicles, Life

Carry Me Home

This is the worst part of day — that time between being faraway in dreams and being awake and distracted by work, when the reality of all that is happening and has happened sets in.

It’s when you hear people passing outside your window — teenage girls on their way to school, shoes slapping against the concrete as runners rush by, older ladies laughing as they power walk wherever they’re power walking to. I wonder if they have a destination. A part of me thinks you should always have a destination.

It’s when you hear the outside life slipping through the cracks beneath the door that you realize how lonely you are within, how, though you have so much and are forever grateful and truly blessed to not have had to sacrifice much for this illness, you realize what you’re missing. You realize what you’ve lost.

You realize you’ve lost yourself.

Because who are you without this illness? It heightens everything, its symptoms ranging from physical to neuropsychiatric, and it all seems to be a part of you now. It’s been a part of you for most of your life, only you didn’t know it, so where does the illness — these symptoms that affect your very personality — end and where do you begin?

The way you look at the world, the way you interact with it — is it all due to this disease enhancing a penchant for reflection and solitude, manifesting itself in a withdrawal from the world? Does how deeply you feel, the senses and empathic nature and vicariousness that comes so easily come at all because of heightened sensitivity?

Is happiness really only this disease-induced mania? Is sadness only the other end of depression?

I feel like half a person, a bit broken and weary after spending each day fighting: fighting for your health, fighting for your livelihood, fighting for some peace of mind and a break from the fighting.

Because when every thought can trigger an episode of Lyme-induced bi-polar disorder, when every decision has its consequence for how fast you can relapse, when every action has its limits, it takes all your willpower, all your strength, and all your control to focus on the present, to try to be a part of the world when you feel so separated by it, when just living is hard enough, when just being becomes surviving.

I don’t know what’s real anymore. Or maybe I do — I know that what’s important is real: my family and friends and the love and support I receive from them. But there are days when I can’t reconcile who I am on the outside with who I am inside. This. This is real, right here — this bare-my-soul emotion. And the feelings of contentment are real and the happiness for others and sometimes even the courage to get through the day. Everything I’m able to write and express is real because it’s internalized, projected outwards. But outside of myself, that person you show to others when you’re around others and not protected by a barrier screen, I can’t be sure.

When I’m at work, I have to quiet the pain and control my thoughts for fear of slipping back into a darkness where desperation sings, to distract myself from this suffering and uncertainty of a future. When I’m with friends, though I try to relax and be who I am inside — that real Susan, that easygoing, jubilant, lover-of-life, carefree Susan — I still feel so guarded, like I have to protect myself, like anything can hurt me and if I hurt any more, I don’t know how I’ll come back from that.

I’m in survivor mode. All the time. And I don’t know how to lay down that weight. I don’t know how to let go of this, of the one thing I’ve been so desperately trying to hold onto through all of this.

Myself.

Because I don’t know who that is right now, without this disease.

Because I don’t know how to let go and try to find out.

Because I don’t know what will happen once I do.

* * * * *

Note: I’m starting to use my tumblr account more to post my in-the-moment thoughts and emotions, especially as I continue to cope with this illness. I’m getting better, undoubtedly, and I know I’ve come such a long way since the beginning, but the long fight makes one weary, and it’s hard to keep up that strength when the weight of it wears you down.

So, on this tumblr, I’ll post the stuff that is too short for a full blog post and too personal for Twitter and Facebook, if you can imagine. For better or worse, it’s the place for everything that’s running through my mind, the emotions that threaten to pull me under were I not able to voice and try to make sense of them, and the hope that thrives among it all.

Life, Personal Development

What If I Fail?

It’s Monday.

On Thursday, the Kickstarter campaign to raise funds for my book will be over and I’ll know whether I can continue pursuing a dream, what I had once believed could be a purpose, or if I’ll have to set it aside, the manuscript closed in that metaphorical drawer until another day or forever.

I’m a mix of emotions right now — and I can’t tell if it’s the Lyme that’s exacerbating these emotions in this illness of extremes or if it’s just the nerves of waiting, of trying to figure out where I go from here. I’m torn between feeling gratitude for every single person who has supported me and supported this book — that gratitude is steadfast.

And I’m wracked with feelings of guilt that I should continue to need that support.

I can fail at this. There’s a little part of me that’s screaming that I’m failing already, though I’m trying so hard. And while this illness has shown me my own resilience, while I know that I’m capable of picking up the pieces and try, trying again, I honestly don’t know if I have the strength to follow through, to keep fighting for anything when I just want to let go of everything.

My doctors, my parents, and friends repeatedly remind me that I’m not in control with this disease — not of the pain and the fatigue that course through my body or of the neurological symptoms that seem so prominent now. Still, I try to fight against all of that, wanting to find some control among the chaos of illness when there’s none to be found.

Every waking moment becomes a fight for survival, when just living becomes exhausting. Every decision and choice, every attempt to focus every thought so that you don’t fall back into the darkness in which you’re so susceptible, and every action that could have its consequence becomes a battle that you have to win. For most people, surviving is about the external; for those with a chronic illness, it becomes a war among your very self.

I have no control over my body. I don’t have much control over anything else in my life right now, either — my job still hangs in the balance, contingent upon disability protection that goes away in January; maintaining my house is dependent upon my family helping me out with bills and my mortgage and my medicine and the guilt that comes from just that alone, never-mind what caring for me emotionally is doing to them, is all-consuming…

I don’t know how to let go. I don’t know how to let go of those feelings of guilt, I don’t know how to surrender to what this illness has done and is doing to me, my body, and my life, and I don’t know how to give up on this…

This dream.

During the summer, among the worst of this illness, I desperately sought out a purpose, some reason for the waking, a reason to hold on until tomorrow when some of that darkness spills over even into today. I found a future for myself in pursuit of this dream, in creating this book and in the longing to share the story that is a piece of my heart.

Now I’m beginning to wonder just how selfish I’ve been, to have needed that emotional support and to be asking for so much more. I know. I know that it’s so much. And I’m grateful and so sorry for it all at once.

I can fail at this. I can fail at this campaign and this book and this dream because I have no control over it, either, like I had foolishly, naively once believed.

I know this now. Only, I don’t know what else to do and so I keep fighting for it.

Because I don’t know what will happen next.

I don’t know what happens once I finally let go.

Administrative, Career Development, Personal Development, Writerly

Pimping Myself Out Makes Me Uncomfortable

(In the self-marketing sense, I mean. It’s true. I feel vulnerable and uncomfortable and I keep telling myself it has to be worth it if you believe this much in something.

And I do.

So, here goes everything…)

Just one week ago, I introduced Annie Summer to the world with a Kickstarter campaign to help fund my self-publishing efforts and bring my coming-of-age novella, Gold in the Days of Summer, to the bookshelves.

THANK YOU to those of you who have already pledged to back the book! I really can’t find the words to say that enough. I believe in Annie with all of my heart, and you’ve shown me that you, in turn, believe in me. I wonder if I’ll ever be able to convey the depths of my gratitude for the encouragement alone.

You’ve helped me realize a dream through some of the darkest days…

And now I’m finally ready to share that dream with you as it becomes a reality.

* * * * *

So, Annie’s out in the world, already telling you her story leading up to the events in the book within her social spaces. You can find out more by following her below:

Twitter: @AnnieSummer
Facebook: Facebook.com/GoldintheDaysofSummer
Pinterest: AnnieSummer
Flickr: Annie Summer
Instagram: goldinthedaysofsummer

But did you know that there’s still so much more?

The Beyond The Book Newsletter plays host to monthly summaries of Annie’s social experiences, insights into her world in 1979, an insider’s look and updates on the self-publication process as it’s experienced firsthand, and brutally honest, tell-all thoughts on the book itself and all aspects of this journey (including all the frightening stuff, like what it means to push through vulnerabilities and self-market).

Sign up this week for an exclusive sneak peek at the first chapter!

* * * * *

Here are some things to know about pledging to the project:

  •  Kickstarter donations are transferred at the end of the campaign and only if the fundraising goal has been met.
  • All donations will go towards the professional development, production, marketing, and business of this book. Find out the how’s and why’s here.
  • Those who pledge through Kickstarter have the opportunity to get a little something back (my favorite part!). Rewards are set for specific pledge amounts and include signed copies of the book, a chance to have your name or a name of your choosing as a character in the novella, promotional packages, and even a pair of shoes to be used in marketing materials.
  • Can’t pledge? No problem! Even $1 can go a long way in this campaign, but I know from experience how life events can interfere financially (hence, the reason for this campaign). You can still support the book by following Annie on Twitter, sharing her page on Facebook, or promoting the campaign on your website or blog using one of the banners below (thanks, Mike!):

* * * * *

The decision to self-publish and launch this fundraising campaign was a difficult one (and believe me, marketing myself like this has been even harder!) and I still can’t honestly say I’m entirely comfortable with it. However, I’ve always believed in the power of community, and I believe wholeheartedly in this story.

Through this fundraising campaign (and Annie’s social media ventures), I’ve discovered the opportunity to connect more personally and directly with you as potential readers.

Gold in the Days of Summer has become so much more than a book — it’s a story.

And Annie is so much more than a character — she’s you, she’s me, she’s anyone who ever questioned what it means to be a part of the world.

And this project is so much more than bringing the book and Annie to the bookshelves — it’s about creating an experience for readers, an ability to connect to characters — and each other — in a new way.

It’s my pledge to you, in return, to make that experience as rewarding as I’m able.

Thank you.

No, really. Thank you. For everything.
* * * * *
Linkage:
Sign up for the Beyond The Book Newsletter
(exclusive sneak peek of Chapter One happening this week!)
Check it out!
I had the privilege of being interviewed over on writer friend Andi Cumbo’s blog this weekend.
Check it out for more on the book and my thoughts on writing: