Three Black Clouds

So I met with my neurologist on Tuesday and there were some surprises. We talked for a long time about what we can see in the MRI and what we can’t. Like the future.

He dropped some big words and some percentages and I nodded a lot. Technically, I have CIS, or “Clinically Isolated Syndrome” and you’re right that is a ridiculous name and could in reality refer to anything, but actually means “Not MS, But Could Be.”

Onto the three clouds.

Cloud one: This develops into MS. I have a lot going for me that it won’t, but 15% that it will is the number if you want one.

Cloud Two: Cancer. Did you freak out a little there? Because I have been doing that, albeit silently for two days now. Probability, pretty low. The plaque we can see on the MRI needs to be monitored for any signs of growth, indicating, duh, cancer. It seems the MRI machine and I will tango again in November. And by “tango”, I mean “twitch nervously and cry in that damn tiny tube.”

Cloud Three: Some sort of cervical spine disc surgery IF the tiny spot where the spine is almost kissing the nerve budges at all. IF. My neurologist asked me “Do you sky-dive?” Uh, no. “Bungee-Jump?” Nope. “Kick box or get kicked in the head ever?” No. “You’ll probably be okay.” (Have I mentioned that I like him?) Although he did say that 20 years down the line it might be more of a problem. Old age is a bitch.

Do you see the low probabilities and lots of “maybes”? Because there are. In a positive frame of mind, you might look at this and think “home free!” None of this makes mention of what I am right now. Healthy. Strong. Vibrant with flowing locks and ripped abs. Er, I mean, Positive and Hopeful. Supported.

What would you do if you knew about those clouds on the horizon? Probably nothing, right? Something terrible could happen to anyone and any time. We know this and yet don’t keep in in our minds. I sunk down the last two days and thought a lot about, well, nothing. When the first episode of numbness began in December and no one knew exactly what we were seeing yet, I thought about the future a lot. How to prepare my body, my life, my kids. Now that we know more, the future looks oddly blank.

On the way to a spinal tap that would give us more answers, my husband hugged me for a long time in the driveway and said, “Your odds are just the same as everyone else. Okay, maybe a little bit worse, but you’ll be fine. We’ll be fine.” He’s right. It’s still true. Then we plotted to steal a hospital wheel-chair, just in case.

There are some things I could do at this point. Some in the medical community think that the moment you are diagnosed with CIS, you start treating for full blown multiple sclerosis. It helps slow the progression of the disease. In some cases, like mine, that is a lot of expense and misery (think daily injections and side effects ranging from rare but horrible to reduced immune function and/or plain old diarrhea.) We’ll skip the Expensive Preventive Misery for now. The other thing I could do has to do with diet. There are anti-inflammatory diets out there that people with reduced immune function swear by. And that might be what I’m dealing with—a disorderly immune response. I could also plan for the chance of debilitation. I don’t know if I’m ready to do that. I have to keep in mind that planning for the worst doesn’t make the worst hove into being. It just makes me prepared.

No one can truly say the cause behind nerve demyelination. For some of us though, perhaps it is just the impetus to look long and hard at our lives and be given the chance to truly wake up and live while we can, to really look at the lush life we live of family, safety and luxury at every turn.

Screw those three black clouds. It’s pretty sunny here right now.

Snapshots of Parenting

I don’t know that I have any pictures that truly capture “parenting”. I have thousands of pictures of the children (and cats) I’ve parented….but how do you capture the act itself? If you had the camera and the right angle, you could look back at the first five years of being a parent and see:

  • That time you threw your back out while throwing up in the kitchen sink at midnight….and accidentally waking up your five-year old, and then having to talk him down, while hunched, with vomit still on your face, telling him that he really doesn’t have to worry about school, about being too cold at the bus stop right now.
  • The moment your mother-in-law walked into your disgusting, hasn’t-been-cleaned-in-seven-weeks house without knocking, finding you holding a screeching infant you can’t nurse until you get an answer out of your 2 ½ year old—How many vitamins did you eat!?!? HOW MANY??? And then completely ignoring this possible medical emergency to ensure that your MIL doesn’t further judge you as an unfit mother. Thank God you at least have pants on in this picture.
  • Sitting in your car at an intersection with an entirely blank mind. Slowly, the questions come to you, “Where are we going!?!?”, “Wait, how did we get here?”
  • Making snow-angels and seeing that even here, true-to-life, your daughter’s imprint is adhered to your side.
  • The picture of the black hole in your heart the moment the nurses taped your two-year-old daughter’s eyelids shut so they wouldn’t flutter open during her MRI under sedation.
  • The moment of sobbing in your car after you’ve left your four-year-old son at kindergarten for the first time when you feel lighter and impossibly heavy at the same time.
  • The ugliness of that moment when your mother-in-law suggests you go sit in the car and leave the baby with her to “desensitize” yourself to the “traumatic stress-disorder” you “clearly have”.
  • The way your heart bloomed the day your four-year-old says he just wants to go home and hug his “Bon Bon”, the sweetest term of endearment you have ever heard for his little sister.
  • The gorgeous summer afternoon when you picked up your obese cat to save him from being attacked by the neighbor’s dog….and you threw your back out and laid on the driveway for two hours until your husband came home. The way you asked your five-year-old to please, please, please go find the phone, it might be under the sofa, only to have him return twenty minutes later eating a popsicle. And through the rage and pain, you acknowledge, bitterly, that at least he got one for his little sister too. Little turd.
  • A series of pictures starting with disbelief, anger, disappointment, and one day hopefully ending with acceptance and gratitude (yeah, right) when the one person who truly knew the isolation of parenting small children just couldn’t (wouldn’t?) be there for you.
  • That one 37º day when you let her two-year-old joy envelop you and you both stomp in the icy drive-way lake until you’re both dripping, red-cheeked and exuberant. Another picture of that same day with your wet head against the locked front door you don’t have a key for, frantically calculating how many minutes you have before the cold gets her, whispering a string of “fuckfuckfuckfuck”, which she promptly starts joyfully screaming in her tiny voice “FUCKFUCKFUCKFUCK!”
  • The puzzle pieces of your heart that finally clicked together the moment you held that downy little head and then, two-and-a-bit years later, that slippery little head against your chest for the first time.
  • The way you slept sitting up for days, weeks even, with those warm little babes nestled in between your breasts, crying from joy and fatigue.
  • The moment you went for a bike ride with one kid in a trailer behind you and another on a tag-along bike behind your husband and the sun came out and your heart burst with the realization that “Dream: Family” was yours.
  • The way the air cooled in your in-laws living room when you said “Yeah, well, Mommy trumps Grandpa every time. I told you to clean it up, so you clean it up.”
  • The time you realized you just pulled all the wet towels and swim suits out of the car and hung them up to dry…and you almost stopped in your tracks when you realized how damn “grown up” you were.
  • There was that time when you put the last brick in the wall, when you announced “We’re pregnant!” and she didn’t say a thing for ten minutes, and your husband took your hand under the table and she finally said “Your mother must be so happy.”
  • There was that time in the car too, when you, of all people, had to be the one to say “Alright. No more butt talk. Every time you say “butt” from now on, you go to bed five minutes earlier.”
  • You might see how at one time in early parenthood, you set up the living room at night for the next day to be different and engaging and educational in special ways for your amazing, brilliant toddler. Now, you see piles upon piles of clutter and dirty dishes and a whole hell of a lot of “unstructured play time” where “just go play okay” while you check Facebook.

Asleep, With Toddlers

  • The day the guys who’d been building the addition on your house for months, finally finished, and you cried because you’d go back to being the only adult in this tiny bubble of unrelenting need, constant touch, noise and the longest days ever.
  • You might see an incredible aerial photo of a small, badly paved road in middle America on a warm fall day, and on this road is you and your three-year-old daughter in the most intense stand-off never witnessed. Twenty seven minutes later you might see that little girl cave, walk without being picked up and someone else standing just a little bit taller.
  • There would be so many photographs of the gray miasma of worry. Small and big. Those ones would so many times be your face, lit by a dimmed computer screen late at night, searching for answers, hope, distraction, anything.
  • There would be pictures of hope and unbearable joy, like the time you realized your children had become best friends, or the time they used their manners without having been nagged…and you thought “I might have done this thing right.”
  • There would be the progression of the hardening of the heart.
  • There would also be those pictures that weren’t so notable, of you on the toilet with two children and three cats staring at you, of you in the shower with the three-year-old’s face pressed against the glass saying “CAN I HAVE MINE VITE-MINS NOW MOMMY?”, of you sitting in a lawn chair watching your urchins play in a mud pile all day long, of you insisting they wear underwear and holding their hand when they get shots, of tucking them in over and over, of telling them throughout it all how amazing they are, the world is theirs, and so, so is your heart.