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I am at a loss. My mind is failing me. I have been to the doctor and have received a diagnosis: Creutzfeldt-Jakob disease. For many months now I have been trying to hide it from everyone, and even from myself, but it's official and it's final. I will not diewiththis disease, I will diefromit. I will continue to spiral and to lose my faculties, and I will no longer be able to hide it. I can barely hide it now.
Over the past four months, I have felt not myself. My writing here has suffered, and my words are hard to find. I have stumbled. I have fallen--both literally and figuratively. My vision is not what it was. My balance is shot, and my speech is changing. I try to speak as little as possible, which raises suspicion. I have told no one but my doctor about these things, and after much testing, I have received assurance that it will all get worse. That I will die. I will die soon. No one lives much more than a year beyond diagnosis with this beast.
Ruby knows. I know that she knows something is wrong. I see her watching me with puzzlement and curiosity as I fumble things and stay silent. The girls seem mostly oblivious, asyoung women who are busy with their own lives and dramas, but Athena was worried when I suffered a particularly bad spell in her presence and couldn't remember much of anything. I told her I'd slept badly and only needed a nap, so she helped me to my room and tucked me in sweetly, as is her nature. My beautiful oldest daughter.
Harlow, whirling dervish that she is, is completely ensconced in her own life. She comes and goes, drops a kiss on my cheek, and regales us with stories of friends and people and places that I cannot retain.
Today is a good day. I am feeling well. My words are close to the surface and my writing is steady--fairly. I have a lot to consider here at this point and need to do so without any influence from others. Ruby will want to swoop in and fix things. She is a fixer by nature, a mother, a helper. I love this about her, but cannot lean on her or involve her too much.
Etienne is another story. Her passion and understanding of life and the universe are different than Ruby's. I believe that if I tell her what's happening and what I'm going to do, she'll see my intentions. She may not entirely agree, but she won't stop me. With Etienne, I'm not one half of a whole, but a man with autonomy and reason. In my marriage, everything has become decision by committee. And this decision has been made: I will not become a lump under a blanket with no human characteristics besides the ability to breathe. It may be fine for some people to ride that long wave out to infinity, but not for me. I have children who look up me. I have commitments and responsibilities that it will kill me not to uphold. And, furthermore, the whole world is watching.
Ruby has pulled her Adirondack chair up against the house and she sits there, legs pulled up and covered by a thin blanket, asshe watches the torrential rain fall on the sand just feet away from her. The afternoon summer storm always clears the air, and while it’s not truly cold enough for a blanket, the wind whips and howls, sending droplets of rain towards her and speckling her legs. For safety, she pulls the journal under the blanket and holds it there as she watches the rain drive into the sea.
This is her first time reading Jack’s final thoughts. Or, rather, this is her first time really getting any insight into how he felt after his diagnosis. It's terrifying to read, as well as heart-breaking. Knowing that Jack felt like he couldn't tell her about the discovery that he had Creutzfeldt-Jakob disease feels like someone is pinching her heart.Of courseshe would have launched into fix-it mode. She would have instantly called around to find the best neurologist in Washington, she would have arranged for appointments and consultations and examinations. If push came to shove, she would have worked her ass off to get the best of the best in the same room at the same time to see if they could put their heads together and save the president. She absolutely would have.
Ruby puts a hand to her cheek to wipe a stray tear as she watches the rain meet the surface of the stormy sea. Both sky and ocean look gray to her, and her mood matches them in color and movement: dark, stony, whipped by wind, agitated, angry.
How could telling Etienne have been the better choice? So she believed in people being nothing but star-matter walking around in skin suits; so she loved to read poetry naked by the light of the moon; so she felt as if they were nothing but two Earth-bound souls of light, simply having a human experience while they tried to find one another--how did any of that help Jack? Her dreamy French-ness gave him permission to fly a single engine plane straight into the Bay of Biscay and end all of the pain, while Ruby's pragmatic wifeliness would have workedovertime to keep him here? That simply seems like a matter of wanting the easy way out, in Ruby's opinion.
She pulls the diary out from beneath the thin blanket again, braving the wild droplets of rain to read more of his words at the end of this, his last, book.
(Undated diary entry)
My mind is everywhere all at once. I can't pull thoughts to the page with my fingers anymore and I find it hard to concentrate. I am here and I am not. I am alone with me.
It feels like there are ten million messages bouncing around inside my brain, but only ten messengers left to deliver them. They are overwhelmed. They do not know what to do with the information. It's so frustrating.
(Undated note that appears to be Jack writing out the script for a phone message to Athena)
Hi, Athena, it's Dad. I wanted to tell you how much I love you, and how proud I am of you. I hope work is going well, and that you are having a good day. You don't need to call me back, I just wanted to call you. I love you, honey.
Ruby cries openly as she reads this last message; it is clear to her now that Jack needed a script to read from at times, and this beautiful little note to himself to guide him through a call to their daughter just rips at her.
(Undated diary entry; handwriting has become small and travels uphill in spite of the pages being lined)
Most of the time now I'm relying on others to lead. I cannot stay present in meetings. The words in my mind do not make itto my mouth. I nod. I frown. I try to look like I understand. I do not always understand.
There is terror in the unknown. I am beyond simple fear now. I can sense myself disappearing, and I need to take action before I no longer exist. I will get to the point where I am stuck inside of this body until the end and nothing will change that outcome. The only thing that can change it now is me.
Ruby's tears are streaming like the water that runs from the eaves of her house, and she swipes at them, remembering Jack towards the end of his life. He'd been distant, quiet, withdrawn. She'd observed him and known something was wrong, but he'd been able to convince Ruby--and probably others around him--that the stress of the job and maybe a lack of good sleep had conspired to bring his overall mood down.
What makes her angry now is that she'dbelievedhim! She, the woman he'd been married to for twenty-five years, looked right at him and bought his half-cooked story about feeling rundown. Of course, what job on the planet is more exhausting than being the leader of the free world? Who, aside from another world leader, could truly understand the emotional, physical, and mental exhaustion that comes with the job?
To reinforce this idea--and also to soothe her own sense of guilt by reminding herself how difficult the job actually is--Ruby pulls another journal from beneath the blanket and flips to a page she has already read twice.
May 24, 2019
I have been made aware of an attempt on my life, and I'm not even sure that I think it's unwarranted. Is that crazy? Perhaps. But on a daily basis, the decisions I make have a trickle-down affect on people who I never even meet. I makechoices that determine the course of their lives and that affect their homes, families, and livelihoods, and I do it all without losing the precious few hours of sleep I get each night. That may sound heartless, but I have to be that way.
Even though I've signed something or made a call that I know will result in an undesirable outcome for others, I still need to climb into bed each night, close my eyes, and sleep the sleep of the dead. If I don't, I cannot function. And sometimes, in order to get that hard sleep, I have to put it all out of my mind. There's a trick I play: when I close the doors of my office each day, I pull them shut behind me as if I'm locking the day's worries inside. Does it always work? No, but I have to try. I have to leave the decision to sign or veto an important bill behind when I head to my private residence so that I can be more present for my children. I need to postpone my thoughts about the choice to move our troops strategically, knowing that some of our nation's finest men and women may lose their lives, so that I can have a few hours a day where I'm just a person. My brain requires me to compartmentalize things in a way that other people must do as well, in their own ways. It sounds and feels callous sometimes--even to me--but the human mind isn't set up to comprehend the atrocities of the world and to see the injustices, then to just shift gears easily and enjoy the spoils of a good life.
And a good life it is. As a young boy, certainly I dreamed of a life in politics. (And how many young boys can say that?) I thought someday I would be President, and that I alone would make the decisions that continue to keep our country at the top of the list of great nations. Of course, as a boy I could not have known the cost of such a thing, nor could I have truly understood the ramifications of deciding whether or not a man receives a pardon for a crime committed decades ago, of signing a bill into action after hundreds or thousands of peoplehave poured their heart and soul into making it a reality, or of making a statement to a nation of souls during a time of war or great strife. Being the steadfast, calm, measured face of a nation is no small task when you are but a resident of that same country--albeit one with slightly more responsibility, power, and visibility.
There have been days I've put my face in my hands at my desk and cried when no one was there. There have been nights I've gone home fearful, watching my girls eat dinner and thinking about what would happen if America were under attack again as it was on 9/11, or what might happen if someone made a successful play at assassinating this country's figurehead--which is precisely what happened this week.
I was in New York City for a meeting with several dignitaries, and while everything felt completely normal to me--I attended a breakfast meeting, drank a cup of orange juice and a coffee while I ate a sweet roll--the secret service was busy thwarting two men from Yemen who had climbed through miles of the hotel's dusty and dirty air ducts in hopes that they would be able to kill me if and when I used the toilet on the floor of the building where the meeting was taking place. My team had swept the bathroom carefully in case I did choose to use it, but had not detected the man poised above the ceiling with a tiny camera threaded into the ceiling tiles to let him get a full view of the two-stall restroom.
Unfortunately for my would-be assassins, a hot water pipe burst above the bathroom, burning the man hiding in the ceiling badly, and his partner abandoned him there, trying to race to the lobby and escape the building ahead of detection. Their plan all along had been for either or both to sacrifice their lives for this mission, but if one was caught, the other was to flee.
