This Is the Worst Book Ever

I got the CD-ROMs in the summer, and I opened them in November.

I’d asked the hospital to send me my daughter’s unabridged medical records only when I’d realized that it was as simple as filling in a form and sending a check. I did it before I could chicken out. I did it because I could. I did it because I was starting to jumble the facts in my head, because even though I didn’t want to sue anyone, I wanted those records before they got lost or deprecated, before their systems changed, before the years of my daughter’s misdiagnosis and unnecessary treatments got buried under other things, both in the hospital filing cabinets and in my soul.

When they arrived, I realized that they were not a box of papers, as I’d expected. They were on a handful of CD-ROMS: one for the notes and chart, and five for medical imaging: chest X-rays, CT-scans, EKGs, echocardiograms. I held the imaging CDs in my hands and wondered: was there a video in here of my daughter’s heartbeat? If she’d died, would I have wanted to hear it? Would I have wanted to play it as I fell asleep?

She didn’t die, and, as it turned out, I didn’t have a CDROM drive. I put the CDs in their envelopes on my desk, and I pretended they weren’t there all summer. Summer seemed like a terrible time to read medical records. I didn’t want to dim the sun. I left them there for months.

Then, one day in November, at a write-in for NaNoWriMo, I asked the host if she had a CD-ROM drive that I could borrow, and she did. As she went to retrieve it, I looked outside. The sky was dark. My toes were chilled and aching, as they are every winter. My fingers tucked themselves into my palms, and I rubbed my fists on my jeans. Under my jeans were long underwear. It seemed, finally, like I was well-insulated enough to read what was inside: a book of information about my daughter, some of which I might never know otherwise.

As I wrapped my feet in a blanket beneath the table, the CD-ROM whirred in its drive. Clicking on the only file on it — a PDF with over 600 pages — was an act of bravery made possible by the presence of other people — most of them strangers — in the room. Surely, I thought, I won’t cry with all these strangers around. 

I was right. I didn’t cry. I read the records of her clinic appointments. I read some biopsy reports. My ankles tingled as I read about incisions and pulses and ligation and sutures and drainage. I put my head beneath the table, between my knees, and I took deep breaths.

There was no winter cold enough to numb me to this, the worst book ever. Sun or clouds, I’d have to feel every page.



This has been a Finish the Sentence Friday post. In the new format, which is hosted by Kristi from Finding Ninee and Kenya from Sporadically Yours, each week is a little bit different. Week three of each month (this week), is a stream-of-consciousness post where you write for five minutes (or more) and just post. That’s it. This week’s theme is WINTER.

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11 thoughts on “This Is the Worst Book Ever

  1. I cannot even begin to imagine. But just glad that as bad as this must have been to listen to that you came out the other end that much stronger, as well as having your daughter recover from all of this. Thanks for sharing and many good thoughts for only the best of the best now, too.

    • Looking at her now, you’d never know. That makes it all the harder to read this stuff – but I feel like I owe it to myself to get through it. Thanks for reading and for what you’ve said. I really appreciate it.

  2. No one can feel like the mother of their own child, but I sure felt the tingling at my ankles and an inkling of what you felt looking through the pages. Awesome writing Debi, I felt every word.

  3. I can only imagine how difficult it would have been to read that.

  4. I can completely relate to wanting to know and not know. To postponing the knowing and the reliving. Sometimes, I want to go back to where my son was to where he is and I’m not even sure where to go… I tried recently to reconnect with his former developmental pediatrician, to see what her take is on him now vs. then but she’s moved, and hasn’t returned my phone call. You inspire me to call again and again. I want to know. Thank you for that. And for linking up again. <3

  5. Yes. My dear.
    Yes to this. To reliving. To breathing. To you and to her.
    Yes. <3

  6. What a difficult story to read, indeed! Good to know that seeing her now you’d never know. What a relief for you! I read this the other day though didn’t comment then because life!

  7. Wow – definitely the worst book ever. It sounds like you made the right decision to read, even though it was so difficult. And I’m so glad those days are behind you!

  8. What a powerful piece of writing. I could truly feel your emotions coming through. That would have been so hard to read, but I certainly understand your desire to know all the details of what had been done. I’m so happy she lived through all of that.

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