Electra & AML: The Asymptote

(See all posts related to Electra's ongoing treatment)

There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.

One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.

Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.

You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.

Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.

It turns out, the difference between something and nothing is bigger than I was ready for.

Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.

We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.

I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.

Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.

Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.

Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.