“My point is, life is about balance. The good and the bad. The highs and the lows. The pina and the colada.” —Ellen DeGeneres
“It’s a roller-coaster, isn’t it?”
This is a common response I get after telling someone how Vernon is doing. We usually shake our heads and sigh in agreement.
But a month or two ago, waiting with Vernon in the ER, for the first of a series of emergency/surgery visits that would stretch over the next couple of weeks, I remember thinking: “Nope. That’s it! I can’t do the roller coaster thing anymore: these ups and downs and getting so emotionally involved in them. There has to be another way.”
I worked through a lot of fears in the weeks since then. I decided it would be better to look at life as a balance beam instead. That way, if I falter, its not so far to fall. And if I get hopeful after a breakthrough, I won’t be completely manic, preparing for our newfound future. The pendulum has got to settle some time.
I remember calling the ER about 10:00 one night, asking for information on my husband, who had arrived earlier by ambulance. The receptionist was confused that I seemed so relaxed on the phone. “No big deal,” I said “We’ve been through this a few times now. I’m just here if anyone has questions. See ya.”
And lately…walking on a balance beam has felt better. Better than a roller coaster, anyway. Yes, I’m afraid to enjoy the joys of Vernon’s progress too much because I know it could be taken away any moment. I keep reminding myself that tomorrow might not be so great, not to get too caught up in what is most likely only a temporary jump forward. I use reverse psychology on myself the same way I set clocks around the house five minutes fast. I know—but I still double-take. Sometimes, I even forget.
So about two weeks ago, when Vernon was suddenly doing so much better about two weeks ago, I told myself not to get too thrilled over it, because he might only be that way for a little while. “Ease into it,” I kept saying. “Breathe. You don’t know how long you’ve got this.” But what did I do? I made plans anyway. I booked a wheelchair van for Thanksgiving (who wants to wait till Christmas?) and started yattering to the kids how Vernon might possibly come home for good sooner than we thought…and then I started worrying about that.
Last week, though he was relatively conversational, he was showing marked signs of regression with clenched eyes and teeth and increased agitation, moodiness and confusion. The doctor has his eye on it, but there is no clear source of the problem. I was worried, but I had chosen to walk the balance beam, rather than ride the roller coaster, so I didn’t react too strongly.
The weekend’s horrible events on the world stage put me in a very sad mood, as I’m sure they did most everyone else. Every time I turned on the radio or opened my computer, I was reminded of the attacks in France paired with the refugee crisis (which had already been breaking my heart for some time.) Everything felt so hopeless and heartless. The future looked bleak. Little French Tricolours jumped out of my laptop as if it were a pop-up book. For some reason, that made visiting Vernon even harder. I guess I was just too bummed-out to deal with my own reality.
All this set the stage for a terrible morning with him yesterday. I was angry at him for being hit by a car in the first place. I was annoyed by the center for treating him like a machine. I was pissed off at the doctor for not seeing things more clearly. I was vexed at the government for a basketful of medical woes. I was mad at the cold black clouds above for not actually pouring down any rain.
By the end of the visit, I was ready to cancel the Thanksgiving transport van in order to accept my fate of a roller coaster life. How dare I plan ahead, how dare I tell Vernon, Joe, the kids that we could hope for more? Bad attitude? Maybe. Once in awhile it just all seems too much. And the weight of the collective sadness of the world didn’t help. I went home and took a long nap…well, as long as Justine would let me.
(Working on a piece for the upcoming craft-fair during dialysis.)
But what a difference a day makes, huh? I’ve often heard that cliches stick around because they are true.
That night, Susan texted me: “Need me to sit with Vernon tomorrow?”
Oh yes, I did! I didn’t think I could sit with him four more dialysis days this week feeling so blue. (Thankfully, my mom was able to take this morning too.)
I spent extra time washing and brushing Justine’s hair that evening, which she loved. Later, Maki came into my room while I was reading, and reminisced about his school days in England. The smiles on his face were almost enough to make me believe all was well after all.
Chris Adams rang up the next morning. “Hey, I’m in Irvine. Where is Vernon today? I was thinking of checking in on him.”
I gave him the address, knowing even if Vernon was having another bad day, that he and Susan would hit it off.
I got these pictures from Susan a few hours later.
Chris is reading “The Magician’s Nephew” out loud. Apparently, whenever there was a break in the story, Vernon would shout: “Keep reading!” He has become very demanding lately. Also he was able to answer questions about the story correctly afterward.
But it’s this next one that made me laugh out loud.
Susan had brought funny vintage paper masks and Vernon wanted to try one on. Hilarious…and slightly scary!
While home that morning, our friend Paul Marquis came by to look at our faulty record player. Rather than fixing it, he left us an even better unit! (Thanks, Paul!) Maki’s new Radiohead album sounds amazing on it. (Thanks Scott and Sarah!)
When Justine and I went up to visit Vernon in the afternoon, I could tell my attitude was adjusted from the day before. I didn’t feel so sad and empty, though I didn’t know what to expect when I saw him. He was awake in bed, watching the cartoon movie “Ice Age.” Joe says he watches this one a lot. He seemed pretty enthralled by it. Vernon always did prefer animated films, but I had thought it was just because he liked watching movies with Maki when he was young. Maybe they really were his favorites. He sure likes them now. Justine and I made ourselves comfortable and watched with him in the dark of the room.
Family time is whatever it is when we are together, and sometimes I just have to be happy with that. I can’t have any expectations when I live a day at a time. But it sure helps when the day starts out right. I can’t tell if Vernon is much better from one day to another, but I know it makes a difference when my head is in a better place. That part is up to me.
We breathe (and pray) and find our balance again. And then take another step forward…or a step back.
PS here is a clip from Sunday. Maki and Vernon speaking Norwegian (I think!)