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We Could All Die Any Day

October 24, 2011

This is NOT my neck, it's just a neck.

Every now and then I have to go see my spinal surgeon. I don’t mind it because he’s awesome, and I always learn a lot. That, and I have a particularly strong ability to only hear what I want to hear and disregard the rest. He tells me all sorts of things about how completely fucked up my neck is, how miraculous I am, how nobody can do anything to fix it or help me not be in constant (goddamned mother fucking excruciating) pain all the time. He always looks sad as he tells me these things, but I’m used to hearing them, and mostly want to help him not feel so bad telling me that it’s all futile. And then I ask if I’m going to die, he says, “probably not,” and I hear, “you’re fine and amazing and will live to be 200.”

He always tells me I have the best attitude he’s ever seen. That makes me happy. So my amazing attitude and I leave, feeling pretty good about the life prospects. Or at least the prospects of actually staying alive.

Then the attitude dissipates and I remember that I’m in pain. That I can’t run, bike, swim, ski – do any of the things that I used to love so much. I can’t do yoga, I can’t…..

And then I remember the things he ACTUALLY said, like that I need another MRI on Monday so that we can see if / how the cyst at my brain stem is doing. Oh yah, brain stem. That’s right. See, I usually focus on the broken C2 vertebrae, because that’s way more dramatic and cooler sounding. But the even larger threat is the cyst that formed near the broken C2, on my spinal cord, pretty much right at my brain stem. The brain stem, you know, pretty much the on / off switch for your life. That.

He explains to me that if it grows to where it is putting pressure on my brainstem –  a millimeter or so –  I will have major symptoms. I ask what the symptoms are. He says, “death.” That’s a pretty conclusive symptom. “You’ll just stop breathing.”

Oh. That. No symptoms leading up to it, just, you know, that. Dead.

For the last two years, I’ve had MRIs, and it seems pretty stable. Not growing, not shrinking. Shrinking would mean less pain, that would be awesome. Growing could mean instant death. That would be less awesome. So, basically, we want a cyst that is not changing at all. Because change can go either way. Any sort of “it’s alive” thing could be bad. So what we want, really, is a good reason to believe that things will always be exactly as they are now. This pain is good news, given the alternative.

Cysts like this are uncommon. Injuries like this are virtually unheard of, so there’s no real way to guess what’s happening, even with lots of data about my specific cyst and injury – because there’s nothing to compare it to. It’s not like cancer, with which people know the basic rates at which certain kinds of tumors grow. But he feels like that with 3 solid years of not changing, he can stop worrying.

“Were you worried all this time?” I ask him. “Yes, weren’t you?” “No, not really.” “You have an amazing attitude.”

Yah, it’s called delusion.

If Monday’s MRI shows no change, I’ll be in the brain-injury equivalent of remission. It is a sort of irrelevant comparison, but basically it’s the state of “no more or less reason to worry.” Like with cancer when you consider it “all better” even though you know it’s lurking way back there in the background. About as likely as getting hit by a bus – if you live in a major city with lots of bus traffic.

I honestly didn’t realize I was in this place.

So I schedule the MRI, and go on with my day. At dinner, I’m talking about the schedule with Celia and I tell her that I’m getting another MRI on Monday. I matter-of-factly tell her that if nothing has changed then I’ll sort of be in remission and we can stop worrying.

She, of course, went straight to worrying. The idea that mommy has something in her brain that can kill her at any moment with no symptoms, no trigger, no warning is a bit unsettling on a kid. She fought back tears.

“Mommy, what do you think?”

“I think I’m going to be fine, for a long long long time. I am going to live a long and funky-ass life.”

“But what, really? I mean, you could die at any moment, I don’t like knowing that you could die at any moment.”

“Honey, ANYONE could die at any moment. For any reason. It’s not any different, I promise.”

There’s no way out of this conversation. She is terrified. I don’t know what to do now. I don’t want to lie to her. I don’t want to present her with certainties that will destroy her when they are shown to be false, and I am shown to be a liar for telling them to her. But at the same time, if you have seen that look in your child’s face, gawd, there’s nothing worse. It’s 1,000 times worse than “we’re getting divorced.”

Then she tells me that every time I go away, and the phone rings, she worries that it’s bad news. That when I get a bad headache, she’s afraid I’m going to die.

I don’t even know what to do with this information. But it makes me angry.

Not at the reality, but at the insurance people who are sitting around trying to figure out what my pain and suffering is worth. What is the dollar value for that? For the fact that my injury has my daughter in a state of constant fear of my death? Fuck my pain, which is at times almost unbearable, what are you going to do about my daughter’s well-being? How will you value THAT?

I am me. I work my “Maude” magic and explain that life is today. It is every ounce of joy you can give and take today. It’s a gift. It is magic. Put nothing on hold. Hold on to nothing that holds you back.

I have a good attitude, I know it, and I am grateful for it. I want to teach it to her, I want to share it with others.

But later. Right now, I just want to cry. It hurts badly today, partly because I don’t have the emotional strength to think my way through it. It hurts. I’m mad. I’m sad. I’m bitter. And I’m scared. A little bit of swelling is all that stands between me and death. I won’t care if I die, I will just be dead. But other people, will they be ready?

All I can do if that happens is hope that I have raised a child who will use it as a lesson to grab onto life and love TODAY.

But really, I know that I have a long life to watch her do just that. Starting tomorrow. Tonight, I’m crawling into bed, crying and planning to wake up tomorrow to the rest of that awesome and funky-ass life.
___
UPDATE:  The cyst grew. It is bigger. This news was given to me as I held the hand of – and eventually melted into the shoulder of – the strongest, most amazing and generous (and hot) man I have ever known. He, upon digestion of the news, assured me that we have a long and happy life together ahead of us. We then ate fish and chips, made plans for our future together, and consumed large amounts of ice cream. I am profoundly grateful for being exactly damaged enough to know exactly how lucky I am.

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9 Comments leave one →
  1. Anonymous permalink
    October 24, 2011 10:23 pm

    I sure love you!

  2. Anonymous permalink
    October 24, 2011 11:58 pm

    Wow! Powerful writing 😉 What was your injury if u dont mind me asking?

  3. Kristen permalink
    October 25, 2011 4:06 am

    Your ability to be positive, to love and be alive, is one of the most amazing qualities about you. I always admire it. Just as great is your ability to be vulnerable at times when it would be difficult for many of us. Thank you for opening up yourself and letting us be a part of your journey. Every time I see a post like this I feel lucky to know you.

    Your daughter scored the motherlode, literally, when she was born to you. No matter what happens, she’s gonna turn out just fine. I am really sorry she is so worried about you, though, because that kind of worry doesn’t just step away in the night. Hopefully with time she will see that her risks of losing you are the same as the risks of her losing anyone else in her life, and just learn to cherish each moment there is with you.

    Thank you for being all of you, Alyssa, and for bringing it even when times are tough.

  4. Dan permalink
    October 25, 2011 5:15 am

    Great piece, Alyssa. You go.

  5. October 25, 2011 1:23 pm

    Love you Alyssa with all of my heart – even though we don’t see each other much… Please get in touch! Let’s chat!

  6. October 25, 2011 2:06 pm

  7. Christopher Ball permalink
    October 25, 2011 2:25 pm

    I sit here with a foot injury that just turned into a very little deal,,,, your perspective is enlightening. Thank you. I am sending some warm and holding energy to you ,,, please receive. Death,, what a quandary! The alternative ,,, there really is none. Hence your acceptance is heartening.
    Light, Love and Joy

  8. December 19, 2011 7:30 pm

    Alyssa, you are amazing.

  9. February 8, 2012 12:54 pm

    Alyssa, my husband broke his C2 2/5/10. As you know, you and he both are lucky to be alive and to have mobility. I know how scary this is. I know the stats. Somehow, my husband drew the extra lucky card–it healed up perfectly. I hope your cycst goes away and you enjoy a long full life with your family–and get to go to Burning Man and be a wild woman!

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