“You don’t have a soul. You are a soul. You have a body. ” (attributed to) C.S.Lewis
I would add: You are a soul. You have a mind.
Its been a wild ride with Vernon the past couple of weeks. Dialysis at the new center is going well, though there have been times we need to cut his time short because of his outbursts and impatience. I believe he is off his painkillers now, for the most part, and has been sleeping better at night, according to Joe. His his arm, though still somewhat swollen and deformed, seems to be settling down a little more.
His behavior and awareness still can change by the day. Last week, for the first time, he insisted I look for/order a ticket to England f0r a day’s visit (he thought we were presently in Japan.) He insisted he could go all by himself. Yesterday, he wanted to fly to America FROM England—this is a more typical argument from him.
In my own life, I’ve been struggling with discontent. Although some people say I “deserve” to have those feelings once in awhile, I don’t like them. They can be other people’s behaviors and attitudes that frustrate me, as well as the injustice of certain situations. I won’t go into detail about all of that, but I’ll admit my guilt in harboring resentment. I’m at a point where I realize I have to deal with some of this and find new approaches to ‘letting go’ for the sake of my own sanity and peace, now and in the future.
I mention this here because I brought a book to read aloud to Vernon this week that I thought also might help me work through some of my issues. Vernon seems to follow abstract thought better than a storyline sometimes, so I figured it was worth a shot. The words seemed to relax him…and I could feel it working on my own mind as well.
Yesterday, I brought the book again, but since he was happy to just listen to Tycho on my headphones, I read it to myself, writing thoughts down in a notebook for later. It was one of the more peaceful days we’ve had, both of us doing our own thing, but together. From time to time, I would look up from my notes and just practice being present with him.
I was able to look past his broken body, his misaligned eyes, his disability, our history, my expectations, our losses and see HIM. All the rest of him, all the MOST of him. I was thinking about how we are so much MORE than our opinions and our plans, our hopes and our fears, our functions and dysfunctions, the way we look, the way we sound. It was remarkable to recognize this wonderful spirit of man sharing the same space as me, while watching his lifeblood literally flowing on the outside of his body through the dialysis tubes. THAT is more who he is than a brain damaged invalid with kidney failure. Talk about an inner life! It’s all on the surface with this guy, if I’m willing to look a little further.
I wrote in my notebook about the moment: “I see you beyond your eyes. I see you beyond your body and face. And I am grateful to be with you here today.”
I smiled at my husband. He looked up at me, smiling dreamily back. He took off his headphones, taking stock of the information in front of him. He said: “I see your ability to read things and write things and collect information. I now see who you are: someone who wants to learn by finding knowledge on your own. Not everyone can do that. You are able to do something that very few people can do. I wonder if I’ve noticed that before. It makes me love you more.”
Now, while I won’t agree that not many people can do this, it was touching for him to express this appreciation back to me, especially since I had just taken the time to really see him. This is the gift of being present with someone. What you give can be mirrored back to you. Two souls connecting despite your differences and disappointments.
It was a powerful experience, enough to help me today in the middle of an election cycle that has everyone feeling they are right and therefore others are so wrong. It’s the dialogue of dissent and it’s very hard to avoid, especially if you feel passionate about certain issues. But I am going to try to practice looking beyond all the things that identify us to each other. I know this is possible. And that love and joy and peace can be found there. We are more the same than we are told. We are each souls. We are children of God. We have more in common than we take time to see…but when we do, it’s very good.
I’m still dealing with my forgiveness issues and my resentments and my pride and my letting go. But I would say yesterday’s experience was worth writing down and remembering. A note to self. People are always bigger and more alive than I understand. May I continue to see that.
On Friday Justine and I met up with Vernon and his two EMTs at Dr. Leiber’s office in Irvine for Vernon’s arm checkup. I didn’t have a babysitter today, but I thought it would be pretty short session so that would be fine—it might even cheer him up a little.
While waiting for an elevator in the lobby, I held her up so they could see each other. He kept saying: “She’s so sweet. She’s so sweet.” I noticed the female EMT got a little teary in her eyes and looked away. They all know him because he takes so many trips weekly and I’ve gotten to know some of them too, just slightly.) I suddenly felt emotional also, and I avoided looking at her very closely the rest of the time, sure that if we connected, we’d both start crying. To see someone well up when she was watching our familial situation reminds me of how sad it is. But I can’t think that very often or I’d give up…anyway, most of the time, I don’t think about it being sad…we just have to get on with it, it’s our normal now.
The plan was for Vernon to have his sutures removed on his arm and hip as well as having x-rays of the arm. Dr. Leiber decided it was pointless to try to cast him up again as he’d likely get out of it and possibly harm his arm even more in the struggle. I’m more relaxed about the idea than I was a couple of weeks ago as obviously, there is nothing I can do to protect his arm if he’s non-compliant anyway. It’s not like there are any more options we haven’t tried. He seemed up for it, a little confused today though. I had to remind him over and over that he’d had a surgery on his arm. He got quite angry about the cast story, denying it all, and then telling us that his doctors in England had disapproved the cast and it had come off on it’s own—he claimed no responsibility. His confusion would be funny (and at times it IS) except that when it came time to remove the sticky bandage over his hip, he writhed in pain, lashing out at the nurse who was trying to do it. He suddenly didn’t trust anyone there, especially the nurse.
“I don’t like her!” he yelled.
The poor young nurse was doing her best to calm him down and get the job done. I told her not to take it personally.
“Don’t take it personally,” he agreed, looking at her. “Its just that you seem like someone who doesn’t knows what she is doing.”
Another admission he made to the growing group around him, trying to hold him down so he wouldn’t get hurt or hurt another: “I don’t like that you think I’m stupid.” That hits the nail on the head, I believe, and is where much of his paranoia comes from. He doesn’t want to seem clueless or be treated like an imbecile. It’s a recurring theme. He also picks up on something he doesn’t like or trust about someone and it can take awhile to reassure him that that person is safe an qualified.
Anyway, it took a very dramatic half hour to get the bandage off alone. I’d taken Justine out of the room. She would have been happy to play games on my phone in the hallway, but eventually, I left her with Dr. Leiber’s assistant in the office. Shannon and I have talked many times over the phone in the planning of surgery and post-op appointments so I felt I had a friend in her and could ask for this favor. I went back in and held his hand, as he wouldn’t let anyone else hold him down. The sutures were all eventually taken out. The whole thing took over an hour. Afterward, he kissed my hand and said: “Thank you for holding my hand. That was awful. You saved my life!”
At this point, I happened to look over at the tender EMT again and saw her eyes welling up again. Of course that made mine a little wet too and I avoided her face completely after that. Still, its nice to see the sensitivity of his carers sometimes. I already liked this girl, from our previous interactions, but now I know that she feels for him, I trust her even more.
Vernon’s x-rays showed that his arm is in the process of healing, but he was sent home with just a bit of tape on his scar. I hope he manages to keep THAT on. If not, it’s out of my hands anyway. We’ve done our best. I asked Dr. Leiber about physical therapy for the arm. He said, “Non compliant people tend to give themselves their own therapy just by moving around a lot.”
.
I made it up to Justine by taking her to a movie afterward. We saw the Secret Life of Pets. Often during the film, I leaned over to kiss and hug her. She was so well behaved today. Also, at the moment, she is my only person at home and summer is just for a few more weeks. I want to slow down time and enjoy her in this season. On days like today (with Vernon) it feels like we are going backward again and it can really affect my mood for awhile. I am working on this, because life does go on regardless of pain and frustration. And I don’t want to miss the wonderful parts because the bad parts put me in a tail spin. On some days, I just feel burnt out on Vernon’s situation and I feel so bad for his endless discomfort, but knowing I still have someone to love and take care of at home helps me with this quite a lot. And I remember I am blessed in other ways.
This is the last week that the family who hit Vernon has to legally respond to our letters ( delivered three weeks ago, at long last). They still haven’t. And though I know I told myself many times I didn’t expect anything (and believed it at the time)…yesterday, I recognized an anger inside. I’ve waited a long time, taking as high a road as I know to take, and being this close to the end of this part of the saga, the feelings are definitely ready for an outlet. I could barely focus on my drawing class last night, distracted by this trapped energy of sorts. I can see how people displace latent anger very easily. It’s hard to forgive when people don’t give you space to. (I thought forgiveness would be easier…I think it IS easier when people admit their error and responsibility.)
Today, however, someone took Vernon’s session at dialysis off my hands. (Thank you Sharon!) And Justine and I spend the day together, just doing things like shopping for clothes she can fit into (she’s growing so fast) and then swimming in a friends pool together. Justine is a little fish this summer, swimming in the deep end as well as the shallow. It’s so fun to enjoy it together without her clinging on like years past. I can feel the wonderful difference the water made to my body and peace of mind. And tonight I feel more able to take the high road for a few more days. H20 therapy is GOOD! I’ve been in the pool more this summer than usual and I’d say its a revelation! Water is one of God’s greatest gifts. Use it if you got it! It’s remarkable how much better I feel after submerging and swimming…and playing with my daughter.
PS I believe in strongly in the power of forgiveness. I want it to be a major theme in my life. I also believe forgiveness is a journey you move toward. It doesn’t always happen overnight, even for people of faith, like myself. For me…I move toward it, but understand it may never be a finished thing. I hope it will be though…that hope keeps me going toward it.
My brother Hyatt and his family dropped by for a visit to Vernon on their drive back up to Monterrey yesterday. Vernon was not up to seeing anyone at first…not even me. I worried that by the time we got him outside with everyone, he might start yelling or swearing at the kids, just because. Hyatt and I must have convinced him not to swear (he said he’d try) because though he did grumpily shout out rudely to them a few times, he didn’t actually swear at them (that I noticed.) I felt bad because this is the same family that enjoyed Christmas with him a year and a half ago, and he was so pleasant and engaging then. But the kids seemed to take it in stride.
Here is a cute photo of all of them huddling together in the shade.
But what seemed to calm him down was being asked to sign his last form (I think) for his naturalization application. He used his right hand as his left is still so cumbersome. His signature looked pretty good, actually, though I know he couldn’t see the line to sign on very clearly. He also liked being asked for some logo/typography advice from Hyatt. He loves being asked for his expertise.
He said a few times: “I like Hyatt a lot.” The truth is, it’s very rare that he has visitors who aren’t female. I know Hyatt being there and talking to him like he had something to offer was really nice for him. Maybe he felt he had a buddy again. Sometimes, Vernon asks to be sat in the smoking section outside, not because he’s a smoker, but because that is where the more active (and smoking) patients sit…most of them men, and those who are younger than the rest of the people who live there.
Here is a picture of my lovely sister in law, Nicole. It was so fun hanging out with her and the brood last week.
Though still a little high strung by the end of our visit, Vernon had calmed down enough to enjoy some snuggles from his daughter. Looks like she enjoyed them too.
Here she is trying to show him some video of the play she was in the night before…The Lion King. Theatre doesn’t translate well on an iPhone, but I know he wanted to make sense of it.
The hardest thing about yesterday for me was when he said: “Don’t keep going away. When you go, you are gone for such a long time.” I don’t know if he meant my going away for a few munites to ask the nurses a question or to tend to something right there…or if he meant when I go home after a visit. I have a feeling they are all starting to mix up a little but that he has an increased understanding that I do go away for long periods of time. Maybe it’s best that I don’t know what he’s thinking sometimes.
Lois and Marcia went to sit with Vernon today. I got a text from Lois letting me know Vernon was out of his cast. Yes, the brand new fiberglass cast just put on yesterday. Don’t those things usually have to be CUT off? I have no idea how he did it.
But Lois told me not to worry about infection—good thing too as it looks like there is no way to keep his arm covered. She also sent this photo, with a note she’d found his old “splint” on the floor by his chair.
I asked him over the phone about it. “I squeezed my arm out,” he said. Simples.
When I called the care home later, I was told that the nurse there had tried to wrap Vernon’s arm in the old bandages this morning. It was off before his dialysis session even started. I asked her how he got out of the blue cast. She just said: “Vernon has a lot more time on his hands than the rest of us. The only thing he has to occupy himself with is getting out of that cast.”
Hmmm…interesting. It gave him something to do. Well, I guess the cast proved to be valuable in that way. As long as they’ll be watching closely for infection and open sutures, I won’t worry. After all, there is something to be said for the brain of an escape artist. Vernon reminds me of my favorite animal of all, the Octopus. Another brilliant creature.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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