Tuesday, April 8, 2014

An Open Letter to Arnold Chiari Malformation

Hello, Arnold.

Didn’t think I’d see you back again so soon. It doesn’t seem very much time has passed since you last turned my world upside down. In fact, I didn’t think you’d dare show your face around here for another ten years or more.

It’s not the first time I’ve been wrong.

When we last met, you had robbed my husband of his ability to work a paying job, care for his children, and even perform basic self-care on his own. But when Dr. Smartypants stepped in, you retreated. Miracle Man lived a symptom-free life for several years, and I was relieved to have that whole nightmare scenario about his debilitating symptoms and brushes with death safely in our past. I had fooled myself into believing I could leave the most painful of those memories stuffed in a mental closet, gathering dust right along with other useless information like my times tables. Now I know how foolish I was to believe you were gone.

You did not trumpet your return. Rather, you whispered your reemergence in the form of numb fingers. Miracle Man complained of pins and needles, but brushed it off. Maybe he slept on it wrong. Or maybe it was carpal tunnel syndrome from all those years at the cash register. Anything but you.

But he was wrong. Your whisper got louder – not only did the numbness in Miracle Man’s right-hand fingers spread through his hand and up his forearm, but he developed a tremor in his right leg. He tried to dismiss the leg tremor as something gym-related. But Dr. Smartypants knew better. Dr. Smartypants knew within 5 minutes of talking to Miracle Man that you, Arnold, were back to your old cerebellum-squishing ways.

Even then, we met the news of your return with guarded optimism. At least it’s not as bad as last time. At least he’s not passing out. Choking on food. Slipping into heart failure. At least there’s just a little tingling and trembling. That’s something to be thankful for. Right?

Arnold, I gotta hand it to you. You are never one to back down from a challenge. Just when we thought we could live with the annoyances that you had presented to Miracle Man this time, you stepped up your game. Remember that morning, Arnold? Because I will never forget it. Miracle Man woke up slurring his words and dragging his right leg behind him, unable to loosen his grip from anything his right hand touched. So alarming and sudden were his symptoms that Dr. Smartypants saw Miracle Man that very morning. He ordered an MRI to be completed that very day, and he personally called Miracle Man’s new surgeon (because Dr. Smartypants has retired from surgery, but not consulting) on his cell phone before we’d even left the office. Dr. New-Smartypants, the high-level Johns Hopkins brain surgeon and world-renowned cerebral spinal fluid (CSF) disorder specialist with a waiting list several months long, agreed to see Miracle Man two days later.

Fast forward two days, and we sat in the personal office of Dr. New-Smartypants planning yet another brain surgery. Another Chiari decompression, as they call it. Another roto-rootering around Miracle Man’s brain stem to undo the life-altering damage that you, Arnold, are inflicting. Another chance to get Miracle Man’s CSF flowing properly so that the information superhighway of his spinal cord can get signals all the way from his brain to all his body parts and back, uninterrupted.

Before Dr. New-Smartypants would schedule the surgery, he wanted Miracle Man to get examined by an anesthesiologist and get a whole bunch of blood work, scans, and x-rays done to make sure he’s fit for surgery. We glided through that little honeymoon period knowing that surgery loomed on the horizon, but it was kind of a fuzzy shape in the distance. Nothing to cause alarm. Miracle Man’s condition held steady, so we managed to forget for a few weeks that we were, in fact, getting thrown back into the nightmare from which we’d escaped several years ago. We were happy to accept that surgery was the one thing that would keep Miracle Man from rapid decline. It was the Right Thing to do, and we were OK with it.

Then we got the phone call. The surgery had been scheduled. We had a date and a time. That vague shape in the distance suddenly snapped into sharp focus and started roaring like Godzilla as it moved forward. You want to know what it looked like, Arnold? It looked like every repressed emotion I’d stuffed into that mental closet with the forgotten math facts. And you know what?

I have not had a truly peaceful moment since the surgery was scheduled because I’m either busy as hell trying to keep my corner of the world together, or quietly contemplating just how bad things have to get before they get better. IF they get better. Because as you already know, Arnold, there are no guarantees. The most Dr. New-Smartypants is hoping for is to stop your progress. He has already told Miracle Man not to expect any actual improvement. So that whole arm-not-working, leg-dragging, speech-slurring, trouble-swallowing vibe he has going for him right now could very well be here to stay.  

As I write, the surgery is less than two weeks away. To say I’m distracted is an understatement. To say I’m at peace would be a lie. I want to run. I want to scream. I want to retreat from the world and wish everybody the best of luck. Tell them to call me when the world is right-side up again, I have some chocolate ice cream to eat. But those things are impossible. I have to be strong. More to the point, I have to appear strong. It doesn't matter that I’m falling apart at the seams on the inside. I just need to hold my shit together long enough to appear strong for Miracle Man, who is scared as hell. Strong for our daughters, who understand just enough to know their daddy – their very own personal Superman – might not be OK. Strong for all the people who look at me with their deeply concerned eyes, asking if I’m OK. Because if I come unhinged now, I won’t be able to take care of my family. Then what good would I be?

So here, in the "privacy" of my own personal blog, I can tell you exactly what I’m thinking. You, Arnold Chiari, can just fuck right the hell off. There are very smart people in this world who are working hard to eradicate you. I raise my glass to them as I give you, Arnold Chiari, the one-finger salute. 

Dr. New-Smartypants will tame you in the operating room on Good Friday. If you ever show your sorry excuse for a face around here again, I hope it’s after those very smart people have figured out how to make you go away forever.

With Undying Malice, 

1 comment:

  1. Your humor and courage inspire me Christie. As a woman, and mother I can only imagine your pain. I wish i could come drive you to a field, drink a bottle of fireball and give you a bullhorn to scream and cry as loud and as hard as you want or need... and then scream to Mike in the heavens...although we both know he is right there beside you. Just because it's been years doesn't mean that I won't come do that with you if you ever feel the need... I may need a little notice..just a few days..but I promise you, when you're ready.. let me know and I'll be on my way..maybe can pick angelle up on the way. You are a strong woman...but we all need to break down in order to preserver. Hugs to you and your precious girls. You all are in my prayers. ~ April Hunt


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