No Name: Chapter One

I’ve been trying to find a name for myself, and it seems that the further I dig into “who I really am,” the more unfamiliar I become, failing to even recognize my own image in the quick passing of a reflection.

Ironically, most of this extra downtime has been spent on an almost (if not wholly) narcissistic amount of self-reflection. In shoveling away all the dirt and dust that have gathered in places I’ve not cared to visit in quite some time, I have uncovered fragments of myself that I feel should have been left buried. I now wish that I had just let that shovel sit inside of it’s locked shed to rust.

I can still remember what happiness is. It’s not the same kind of “happiness” that I might say that I have now, because what I have now is not authentic. It comes in the form of a pill, and my brain can sniff out its chemical make-up while trying to convince me that it’s the real thing—all at the same time.

I remember the first time I felt fear, isolation, and hopelessness at four years old…and now, with much denial aside, I have been able to pinpoint the very last time I felt real happiness. I was 14.

I can’t explain it in words, only pictures, and I will try my hardest to paint an accurate portrait for all of you as soon as I have the strength.

At 14, happiness was quickly replaced by extreme paranoia. I refused to admit to myself that I needed help because I did not want to recognize that there was something very wrong with my brain, but the strong hands of suicidal ideations began wrapping themselves tighter and tighter around my neck the harder I fought.

No one in my family believed me, claiming that I only wanted to be “medicated” just like the rest of society. I wasn’t even sure what that meant.

They said all I had to do was pray. All I had to do was stay positive, to “look on the bright side.” All I had to do was “choose” to be happy.

They didn’t believe that mental illnesses were real, so I came to believe that I was just a monster, abandoned by God, cursed to suffer in silence.

That’s when I decided to get tested for Huntington’s Disease. I knew very little about the sickness at the time–I wasn’t even sure if my mother had it, but I knew I needed some sort of tangible evidence for someone…anyone…to listen.

And so, I tested positive for HD at the age of 21.

I’m still not sure if the screams that escaped my mouth as I fell out of the doctor’s office and into the hallway were screams of helplessness or screams of relief.

One thing was for certain: I finally held in my hand undisputed, unchangeable, permeating proof of my pain on a single piece of paper,

But I quickly came to learn that no matter how much “proof” I possessed, my invisible illness would never be fully recognized. That is, not until it would eventually emerge into its physical form, and by that time, I might have no voice left.

I began to beg, plead, curse, and even guilt-trip my family into supporting this “invisible illness” and my new-found community. I tried to show them the harsh reality of HD in desperation for support, but to this day, they still mistake my willingness to be vulnerable as weakness:

Muddling around in pity and despair does nothing good. I know these words are harsh, but I have watched you live in an abyss of despair, constantly dwelling on the negative and bad things you have to face because you have HD. You changed the day you found out that you had HD. You have had it your entire life, but the Leah that I knew changed that day, it is a choice to be happy, and its in the mind. You are letting it beat you, instead of you beating it.

You’re only 24, you have a whole life to live. I would be happy to be finished with this world at my age (48 years old).

All of the negative things are picking..Pick, pick, pick. I could tell you what a horrible person and daughter you were, but I have not.

You live in a life of exaggeration and lies. Many things you write are just that. Figments of a made up imagination that slanders me, {anonymous family member}, others, and places blame on everyone but yourself for your actions. No appreciation, no thankfulness. Just self-pity and deprecation. Useless and soul sucking.

Yes, mental issues it can start 10-20 years before physical symptoms, but you were just at the potential cusp of that and all of a sudden you were full-blown because you believed it. You changed big time when you were diagnosed, maybe it was the drugs, but you changed.

Little did they know that I only changed on the outside after testing positive because I thought I could be believed. I thought I could be helped, so I let go of my pent-up pain all at once.

I am not without blame, and I know that I have said and done many terrible things that I cannot take back, and I wish that I could.

But I know what loneliness feels like. I know what it’s like to believe you’re the only person in the world who is suffering this way, and I’ll be damned before I let this disease take me before I’ve let as many people as my words can reach know that they are not alone.

What nobody seems to fully understand is that I have chosen to follow a very vulnerable path in this one, single life that I have been given.

I do not write as a hidden persona behind a computer screen. I write, fully understanding that potential employers, life insurance companies, friends, family, strangers, the world, can see right into the depths of my soul.

I am as honest as I know how to be with myself and with everyone else so that others might be able to read, relate, and realize that they are not alone. Empathy is what saved my life, and I only want to give it back. I have never found a stronger bond among anything in the world than I’ve found in the solid chains that link us together in admitting our weaknesses, and I’ll willingly be the first to step up to the plate. 

All of these memories that I’ve shoveled back up to the surface have forced me to come to terms with a truth that I’d dug a grave for long ago, but now, I am giving it new life.

I am here to talk about what nobody wants to talk about and what some are afraid to say,

So today, my name will be SPEAK.


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