No relief

In the three days since the valve adjustment on her lumbar shunt, Susan’s condition remains the same, if not slightly worse. She slept from about 3pm Thu to about 8am Fri – a span of over 17 hours with only brief waking periods with the desire to sleep some more. Yesterday as I was getting her up from her wheelchair she asked, “Am I alive?” Since she doesn’t seem to be responding to the adjustment, perhaps the shunt is blocked so the hydrocephalus persists. I’ve emailed her doctor and will watch Susan carefully tomorrow in case she needs medical help right away.

Recently, Susan has started chewing her pills instead of swallowing them. I cringe when she does it because some of them are designed to be absorbed slowly – plus they taste horrible. I try my best to stop her from chewing and wash them down with water. This morning she was doing it again. I told her to stop chewing and swallow water. She crunched each pill as I gave it to her. I would remind her to hold it on her tongue, to not move her teeth. She wouldn’t get it and would start chewing. As it went on, I spoke sharply and raised my voice –

Stop it! Stop chewing your pills! You’re supposed to swallow them! …Do you know why I’m speaking to you like this? (I’m doing something wrong with my medicine.) Yes, what are you doing wrong? (I’m letting the lighter parts go down first.) You’re chewing your pills when you’re supposed to swallow them. Do you understand? (Yes.) Here. Here’s another pill. Put it on your tongue and swallow it with the water. Ok? (Ok.)

More chewing. More sharp words from me as my frustration turned to anger. Now I was yelling at her.

I am so frustrated with you! Stop chewing your pills! You’re supposed to swallow them!

More chewing again. She just looked at me. I left the room not knowing what to do. I was fuming and helpless. I asked God to help me – I am helpless with this and don’t know what to do. I returned and explained again how frustrated I am that she was chewing her pills. I told her how angry I was. I asked her if she forgot how to swallow pills. She looked back at me with no expression. I realized she couldn’t help it. She really couldn’t. It broke my heart. I apologized with tears to Susan with tears for yelling at her. I’ve never yelled at her before. Not like that. I realize some couples communicate by yelling – but we never have. It’s just not us. Even after passionate disagreements (often about money) or the hard-working out sensitive issues in our marriage (we’ve had plenty), we always have made up quickly because neither of us can’t stand being out of fellowship with each other. As I cried, I told Susan how hard her illness is on her and on me and how desperately I want her to get better. I kept grieving for a few minutes as I cleaned up the dishes. Then I sat down with her again.

Do you know why I’m crying? (Over of the loss of your father.) Actually, my father is still alive – I just want you to get better, that’s all. I know you understand, don’t you? (She nodded.). Thank you for understanding. (You’re welcome.)

This is tough stuff. Tonight when I put Susan to bed, I lay my head on her pillow before we prayed.

What’s on your mind right now? (I just need to finish my job and then I can be done.) What job is that? (I need to deliver the thing I came here to deliver. Then I can go on.) What is it you need to deliver? (silence.) Susan? What do you need to deliver? (silence.) Did someone give it to you? (Yes.) …How can I help you do the job you need to do? (You can take an active role in it.) Ok, I’ll do that. I’ll take an active role. (Thank you.)

Susan’s words like these are so mysterious. I know she’s processing a lot while she sleeps – and she’s been sleeping a lot. I don’t know how much she really knows or how much she’s able to put into words. I know it’s a process. There is still so much that is hidden.