He Sang to Me

Originally Posted July 23, 2008

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." (Zeph.3:17)

We went down to St. Pete to see my narcolepsy specialist this past weekend, and I brought a list of questions. I'm a big fan of lists. Basically, I wanted to know what to expect from these new treatments he started me on two months ago. It's been so many years since I felt well, that I'm not sure I would recognize "well" if I felt it! I wanted to know if my cataplexy attacks were ever going to go away completely. Would I ever be able to drive again? Would I ever be able to have children? Will the constant fatigue be with me for life? I wasn't prepared for his response.

My doctor, the wizard of narcolepsy, just kept sighing and shaking his head. He'd had such high hopes for my treatment, but I'm just not progressing the way he expected. He hands me a folder about weight loss surgery. I cry. He says I won't get any better until I lose weight, but I won't lose weight until I get better. It's ironic. It's a Catch 22. A vicious circle. There are tons of cliches, but none of them could lessen the sting of the words that sent my emotions reeling. Who wants to be told their weight is out of control? Not a self-professed control freak like myself.

Apparently the trifecta of thyroid disease, PCOD, and narcolepsy/cataplexy are working against any hope for controlling my weight by any normal means. But surgical weight loss? Isn't that for FAT people? You know...other people...not me. People who just sit around and stuff their face with pie, potato chips, and cheeseburgers. Not people like me...not salad eating, water-drinking, vitamin-taking, protein-shaking, carb-counting me. Surely I can control this without surgery. But the truth is, it's been spiraling out of control for 8 years. I can see it in the looks I get from friends and family who don't see me very often...in photographs (who is that fat chick standing next to my husband?)...in the numbers on the scale. Something's got to change, and diet, exercise, and a positive attitude ain't gettin' it done! He says without the surgery I'll just keep gaining weight until I'm one of those people that has to have a crane remove them from their bed. Lovely visual.

Oh, but there's more. He tells me that I can't be pregnant on my narcolepsy/cataplexy meds, and I can't go off them. So pregnancy is not an option for me. I knew that it wasn't an option right now, but I had hope for the future. Of course, God can decide to change all that with a miracle. But medically, logically, factually speaking? Not gonna happen.

Ok...but I'll be able to drive soon, right? Driving?...I need to forget that and focus on a little thing called breathing! Even with the GHB knocking me into oblivion every night, I'm still waking up 47 times in 60 minutes, gasping and choking for air. And the aesthetically-appealing CPAP mask is getting ripped off in the night during my hallucinatory dreams of being smothered, tied up with ropes, and choked. He tells me I either keep the mask on, or I suffocate...especially if I lie on my back. He gives me a t-shirt with a pocket sewn on the back so I can stuff a tennis ball in there to remind me not to roll onto my back, just in case I rip off my mask in the night. So now, instead of looking like Darth Vader, I get to look like Quasimoto in bed. How romantic.

We have a 5-hour drive home, and I'm sitting in the passenger seat trying to hold back the outburst of tears that is inevitable. And then Natalie Grant's song "Held" comes on the CD player. My husband looks at me and asks if he should turn it off, and I say, "No. I need to hear this." She sings,
"Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live? It's unfair.
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held."

God sang to me. He reminded me that because of my suffering I have the unexplainable, unfathomable experience of knowing how it feels for Him to hold me and love me when everything around me is falling apart. God sang to me in a pickup truck on Highway 75.