- Date 19 May 2017
- Category Insurance Knowledge Base
For Your Knowledge
It's 9:00 am, Monday, June 6th, and I am laughing with nerves, unsure of what to expect. My hand shakes slightly as I force biscuits and gravy into my already unsettled stomach. I've been wide awake for hours before my alarm, roaming around the room, trying to keep myself busy. But as soon as it goes off, I want to disappear into the comfort of my bed and stay under the covers until the hotel kicks us out.
My mind dances back and forth between the two options before me: "Do not think too much about a negative, you need to prepare for the worst …" "Do not think too much about a positive … you can 'T break down before. " I try to focus my attention on my friend and my lover, worrying about what the next hour will bring for them rather than me.
At 9:30 am My friend and I are packed and in the car, waiting for the other to check out of the hotel. Of course he is making us late and I am focused on him and the potential traffic rather than what it will mean to finally walk into the hospital.
At 9:45 am I arrive at the hospital and argument with the desk clerk, telling her that I want to pay out of pocket instead of applying for financial aid since I am not using insurance. I can tell that she obviously thinks I'm insane, and my appointment for neurology probably solidifies her thoughts.
Walk to the elevator. Wait.
Find the waiting room we need. Wait.
Continue laughing, talking about unrelated things, and focusing on subjects we did not really care about then and do not really care about now. The distance between DC and Columbus. The weather outside and the rolling hills on our drive. What to eat for lunch.
At 10:00 am My genetic counselor walks into the waiting room and does not say a word. I half smile at her, recognizing the look on her face immediately. We all stand like zombies, half walking and half floating over to her. When I get closer, I feel my feet touch the ground again.
I know. In her face, I can see the answer.
C7. Room C7.
"We're in here" she says and gestures inward.
My immediate thoughts: Okay, this is real. This room is cramped. Maybe it's negative. Where should I sit? Is my doctor really introducing herself to my boyfriend right now? Out of all things, does that matter? She holds out her hand to him and it hangs there for what looks like forever. Who is sitting where? There are not enough chairs. Is everyone okay? It's warm in here. My genetic counselor is still half smiling. Okay …
There is an awkward struggle and hesitation between everyone. My posse is finally imprisoned and I am squished between the man who swears he loves me and the uncomfortable arm rest on the small bench we share. There are too many people in the room. The heat from the loved ones around me surrounds me and I feel cramped but secure for one second.
Just one second.
I imagine my doctor hovering for a few minutes before she sits down and opens the folder. I know she's already seen it. She knows what she has to say. My mind flashes in what looks like bursts of light, photographing every few seconds and making time fly by without my knowledge of what is really happening. She does not hesitate for a moment.
"We got your test results back and unfortunately you tested positive for Huntington's."
Duh you got my test results back. Oh. Deep breath. Heartbreak. Shit.
I start crying, one hand covering my entire face as the other clenches my two friends' hands at once. I feel the love of my life tense up next to me. His chest tightens and his heart bursts through his ribs. He is frozen, as everyone else in the room seems to be, but I am catching fire. The spark I always felt finally burst into flame. I expected this, at least somewhere inside of me I knew, but he was the one who kept the hope for a negative result alive. And now that hope is gone.
What do I do? Stop crying. Ask questions.
"Do you know the CAG repeat?"
"Eighteen from your mom, forty-three from your dad."
I hear my heart shatter inside and I lose my breath. I take a minute as I sob and then pull myself together again.
Quit looking me in the eyes lady, I'm fine. I knew my CAG would most likely mutate up, so I was not too surprised. I can handle 43. I can fight with 43.
My lover wraps his arm around me and starts stroking my shoulder and arm. Does he know what this really means? I should ask.
I stop crying again, wipe the wetness from my face and simply ask, "Now what?"
Please tell me what to do next.
My mind returns to normal speed and it suddenly starts racing between every question I really wanted answered. What is the best doctor around here? Are there any in this building or across the states that I can talk to? How do I get a hold of them? Are there drugs I can start taking to slow things down? What research do you know of, or are you doing, that I can participate in? How do I get into clinical trials?
I can not actually ask these questions, as my throat has not caught up to my thoughts yet. Plus, I know the answers to some of them already but I would like to hear it from her. I need something positive to come from her.
Her response is something like: "Take all the time you need to figure things out."
What. Obviously not what I needed or wanted to hear. I'm not a sit-back kind of girl who waits for time to take control of things. I take control of things for myself. And you, the professional doctor who is supposedly to be good at delivering this kind of news, are not being helpful.
Let me out of the room, please.
Silence … lots of staring … waiting for me to break down.
I know the psychiatrist, the social worker, and the genetic counselor are all ready to watch me break into a million small pieces on the floor. And honestly, before she spoke at all, that was what I would have expected from myself, too. But I'm not going to. I do not need to. I want to take action. I want to do something right away. And all they are doing is staring at me in silence, snot and tear stains covering my face.
I want to melt into my boyfriend and disappear. I want to read his mind and feel his pain because I am alright and I want him to know that. I keep telling everyone that I am okay. The room is getting smaller and I am getting warmer and sweatier as my nerves and newly-lit fire combine and I want out.
The doctors ignore my desperate plea for release and instead prod me with questions, slowly and painfully. I get why they're doing it. They have to make sure I will not jump out of the hospital window or do something impulsive on the way home. But I have the two best people in my support system standing next to me. I have the best supporters waiting back home, texting me, and sending their love. I have people wanting to hear – people that I want to tell! Sitting in a small room that's beginning to feel like a jail cell for an hour is not what I need.
My awareness of his body and attempts to stay put together for me trigger something. I want to mourn the loss of my life for him, with him, but I can not with all these other people watching.
Instead, I turn my head into his shoulder and cry. I cry hard. "I'm so sorry." I'm so sorry, "I repeat in my head.
I feel as if the doctor's announcement ripped something away from him suddenly and unexpectedly, like discovering a wounded you did not know you had. Now, it's stripping away the rights of a future that everyone is born with, a right I now know I do not have. It's destroying the possibility of us dying of old age together, from him more so than me. I mourn the loss of our kids and any possibility that they may have held for him and for us.
"I'm so sorry."
He does not have to be here. He did not have to go through this with me. And he does not have to stay. But I will actively love him more every single day. I will commit to spending my life with him in a way that will make this process easier for both of us in the end. All I have is now and the next few years before this disease takes over. My time to love him will be limited, while his clock will continue ticking beyond my wellness and into my illness, into the time when it is harder to love someone who may not be able to love you back.
I will give him all that I have but I will not expect him to stay when my body is taken over and my mind starts to think he is evil. He can, if he wants, but I will not chain him down, because my love goes beyond him, beyond us, and into the eternal happiness I wish for him.
"I am so sorry for bringing this to you, for inheriting an illness that will take me away from you. You did not sign up for this. I do not deserve this.
Stop crying. They will not let you leave if you keep crying
"Okay" I say, asking to leave with just that word.
They ask me what I am thinking about as I stare down at the floor and avoid their eyes.
I reply, "Who to tell first."
The doctor responds with, "You do not have to tell anyone if you do not want to."
I know this, but I'm going to, probably moments after I walk out of this door. I will not sit back, I can not sit back. I have to let people know. They have to join me in my fight.
I need to tell my friend who shares the same CAG number as me first. I need to tell her that she is not alone. "We are twins."
I have to tell her. I start crying again. "I'm so sorry, Mom," I think as I ignore the doctor's stares.
I hope her memories of me as a young girl playing with chalk and imaginary dinosaurs in the driveway is not tainted. If my symptoms present themselves as schizophrenia and paranoia, I hope she still reminds me as her sweet little girl.
I hope when she sees me struggling with the involuntary moments that I will call my dance, she thinks of me at 5-years-old, walking on my dad's feet to our favorite songs. I hope she does not see my symptoms as a replacement of my dancing as a child, but views them as the same, just filled with a new purpose.
I hope she can still see me as a 2-year-old, throwing tantrums out of hunger or sleepiness, rather than the anger and emotional outbursts I may present in years' time.
I hope she's okay with her grandchildren being dogs and cats for the rest of my life.
I hope she does not blame herself. She could not have known. And I hope I can out-live her because I am not okay with placing this burden upon her shoulders.
Because inheriting HD is a 50/50 chance, I can joke that he's in the clear. I'm taking the bullet on this one and that's the way I would have asked for it anyway, if I could have. But I am sorry, because we do not know. And I am sorry that you may be the caretaker for both your dad and your little sister.
You've worked so hard to build your career and follow your dreams. You deserve the rewards you receive from that and the peace that it should offer you and your future family. It is not fair, and I love you for encouraging me to test and place this burden on you. I wish we could go back to swinging outside, riding bikes down the street, and building snowmen together.
How do I tell my dad? He has not talked to me in over a month, and I am scared that he will feel guilty. "I am so sorry" I cry. I knew it would be this way. I felt it and I have known for years now. Maybe you knew too, Dad, and that's why you were so scared. I really am okay, I promise. We have fought this fight together for fourteen years and I know we are prepared to fight it together for the rest of our lives. We will be okay, and I love you for making me as strong as I am and for giving me the weapons I need for this battle.
Stop crying. I say I'm okay once again. "I need to leave this room or I'll keep crying."
The doctor finally handed me the sheet of paper connecting my CAG numbers with my alias, her signature sitting at the bottom as if she was signing my life over to this disease. She gets up to open the door. The doctors politely tell me to reach out to them if I ever need anything.
"Okay," I say, assuming that I will not.
Walking out the door means walking back into real life. It means that I will forever be surrounded by people who do not understand, who will never understand. Forty-five minutes before, when I was standing here without the knowledge of having Huntington's Disease in my genes, was the last moment in my life that formed of this uncertainty. And with this new realization, the hallway becomes foggy, tainted over with the truth.
I do not remember walking out. I just remember floating on feet that knew their way and wrapping my arm around the love of my life. A nurse in room C2 calls out "Have a good day!"
I burst out laughing. Reality hits. I start crying. Then in a confusing mixture of both laughter and sadness, my loved ones around me panic in attempt to see if I am okay and I start laughing again. I will attack this thing with humor and laughter, with love and joy. I will complete my days one at a time from here on out because that is the only way to get through it. My smile may distort over time, but I will never lose my laughter.
People keep telling me that despite my strength, I am allowed to break down. I am allowed to not be okay. But what they do not understand, and what may just be my immediate reaction for now, is that I really am okay. I have lived the last 8 years assuming that I had this disease. Testing positive for the HD gene mutation means that I hardly have to change my plans. In a way, it is a relief to finally know.
Growing up with one parent in the household who also has Huntington's Disease brave me the weapons I need to start this battle. I have been training for years and years, building up my ammo in preparation for the first bomb that signals the beginning of this war.
I always knew there was something living inside of me that did not belong and I felt that almost every day. There's a little devil sitting on my genes, waiting to spring loose, and now that I know he is there, I can attack before time hands him the power to destroy me. He has limitations that I do not.
With each twitch in my foot and every stumble of my words, I can find strength in his taunting and turn it around. With all the evil he has planned and all the pain he has let me experience, I can build up walls and expand my army. I can join research trials and be a part of history in ways that other HD advocates may not be able to. I can tell my story to Congress and fight to pass the Parity Act. I can make the future better for myself and generations after me that receive the same news that I just have.
I have ways to fight that this little devil does not know about. While he plays jokes on me, I prepare for war. This is more than just a battle against Huntington's disease: This is a war for my life and my loved ones. I do not need to say sorry anymore; I just need to fight. I am finally a Huntington's Disease warrior and I can not be stopped.