Do you ever feel that you can physically feel yourself making space for a new, potentially life-changing concept or possibility? It’s a mental thing, but I can almost feel my chest expanding, trying to fathom this new idea that is not yet attached to a trustworthy emotion. This happens quite often lately but this weekend, I took in a little more than I could process in a short amount of time…two different things, going two different directions. So I’ll bring them to this table here, hoping to look at them outside of myself again…and get my headspace back to normal.
At the dialysis center on Friday, I stopped the elusive nephrologist as he was making the rounds. I told him about the fact that Vernon’s roommate had offered his own kidney.
This is a photo of Dr. Bob that had just been given to him by a patient. I can only assume it was taken on Halloween Friday, when everyone was encouraged to dress in costume. (Vernon didn’t comply.)
Anyway, Dr. Bob responded by lighting up and saying to Vernon with his big loud voice: “You have someone who wants to give you a kidney, eh? That is the gift of LIFE.”
“But what do we do?” I asked. “How do can we find out if this is even possible?”
The doctor was already ahead of me. “Is he on the registry? Which hospital do you want? UC Irvine does transplants….that’s not too far for you, is it? I’ll have my office assistant call and make an appointment.”
“But don’t we have to find out if the potential donor is a match?”
“Before anything, we need to find out if Vernon is a candidate to receive a transplant. I’ll call my office and have them make an appointment to start his evaluation.”
Before I could ask more about that, he had turned and was calling his assistant.
So I guess that path has actually begun. This was the first of the potentially life-changing possibilities that got into my head. It wasn’t the idea so much as the momentum. This could actually start happening! But then…as in all these things. It may come to nothing. Dare I even hope?
I’ve continued reading “The Magician’s Nephew” to Vernon this week, which he loves. I’d forgotten how well written that story was. At this rate, we will go through the entire Narnia series. It keeps him captivated and lately, pretty still. This particular passage jumped out at me after our interaction with the nephrologist:
“At that rate there might be a real Land of Youth somewhere. There might be almost anything. There might be fruit in some other world that would really cure his mother! And oh, oh – Well, you know how it feels if you begin hoping for something that you want desperately badly; you almost fight against the hope because it is too good to be true; you’ve been disappointed so often before. That was how Digory felt. But it was no good trying to throttle this hope. It might really, really, it just might be true. So many odd things had happened already.”
The next morning, Saturday, I was on my way to sit with Vernon at dialysis again, when my phone rang with Mesa Verde’s number. On the other line was a woman, who introduced herself as Jennifer, a new Social Worker who would be working weekends. The administration has been getting an overhaul lately and there are a suddenly people working the offices on the weekends. At first, I was happy to hear we finally had a social worker who was active on the case and I volunteered information about Vernon and his progress/problems.
But then she said: “Ok. What are your goals for his discharge. ”
“Excuse me?”
“I’m here to help you come up with a plan for him to leave.”
“But the last time we had a care plan meeting, I was told Vernon couldn’t leave on account of his feeding tube (among other things.) That we still qualify for the benefit of his staying at a skilled nursing facility.”
“I don’t know who you talked to.”
“The people that WORK there and know his story.”
I thought it was weird that she didn’t know of whom I was speaking about, and it has come out since that she has been recently brought in by “Corporate” to start getting rid of patients and freeing up rooms. Apparently everyone is a little nervous at the moment.
“Well,” she continued. “He’ll need to leave soon. If you can’t look after him at home, perhaps you can hire a nurse when you can’t be there. There are probably some benefits available for you there.”
“Well, you should know that we’ve just started the process of his roommate potentially donating his kidney to Vernon, so I’m not in a rush to separate them, obviously.”
I couldn’t believe what she said next. “Well, they can always keep in touch.”
Rather than further arguing why I wasn’t equipped to look after him at home in his current state, while raising two children—or explaining that I don’t have a regular income to afford a private home or nurse for him (nor has there been any settlement by the driver of the truck)—I only said: “We can talk about it later.”
I hung up, very confused about the change in information…and direction. From her energy over the phone, it sounded like she was ready to move him out before the year’s end. But then, I know these things have never happened overnight for us…so I take comfort in that.
So again, I was suddenly filled with this new potentially life-changing concept. What to do with it? How to feel? How should I plan? Do I plan? Is this nothing, is it everything? Can we take Joe with us?
They seem to be two opposing trajectories. Which one will be our life? Neither? It doesn’t seem like they could both work out at the same time. So here I am, just processing the things I know were put into motion by the nephrologist and the social worker the very same weekend. Time will tell. In the meantime, I’m trying to live with this awareness without feeling totally confused. And again, I wonder if I have any control in our lives at all.
I sit at the kitchen table. Maki has already left for school and I’ve had one cup of coffee. I’ll get the little one up in a bit so she can get ready for her late-owl start time. After that, I’ll drive the 45 minutes north to Costa Mesa for another round of dialysis. I really hate going there, and I’m not even the one hooked up. On these days, I have to prepare my head and heart ahead of time. It’s endless…Vernon may be going to dialysis five days a week for the rest of his life. But that doesn’t mean I take each day gracefully. I do kick and scream some days, sometimes loudly the entire drive up. But I don’t think about it till the morning of. “What does my day look like? ….Oh yeah, that.”
It helps if I think of it as a job I have to go to. I don’t think of motherhood as a job, though I’ve heard people fondly call it one. I do think of taking care of Vernon as a job. It’s not the most fulfilling job, and certainly not one I would have applied for. I’m unqualified and I don’t get paid.
I stopped actively promoting my photography services when the accident happened. There just wasn’t time. Or maybe I chose to spend my computer time ‘working’ at the blog rather than building a business. I’ve come to consider this writing time part as much a part of my work as anything. It’s a job I’ve given myself. I still take photography sessions when people ask for them. I always say yes, if I can. In fact, I make it a personal rule to say yes to any creative opportunity that comes my way. I have had to turn down regular-hour work because of our inconsistent (and surprise!) scheduling, but I’ve been blessed with wonderful project gifts. I’ve been invited to speak a couple of times, I’ve taken on some painting commissions, I went to a writer’s workshop, we have an impending art/craft fair to make things for, and I was recently invited to teach a holiday workshop on simple printmaking.
Now THESE are the kinds of jobs I’d apply for anyway, given the chance. So I take them when they come, deciding that no matter how busy I am with taking care of my family or what new challenges may jump out of the blue, I can’t afford not to. They are good for my heart. And if me heart isn’t well, nothing else is either.
My dear friend Sandy called me just yesterday with this quote she wanted to share: “Heart (as we use it here) means far ore than emotions or feelings. James Houston says our heart is the ‘center of those qualities that make us human…the innermost part of the human personality.’ In fact, our emotions are merely the outward expression of a deeper reality. they are like the indicator lights on a car’s dashboard, letting you know what’s going on ‘under the hood.’ ” (John Eldredge, The Sacred Romance.)
I don’t specifically think about my heart when I reach for these projects that make me happy. that make me believe in some small way that I am putting something well-meaning BACK into the world after witnessing so much being taken OUT of it day after day. But Sandy told me when she sees me sitting in my kitchen, surrounded by half empty cups of cold coffee and snacks for the kids that haven’t put away, amidst pens and pencils, paints and play-doh, that THIS is what she sees happening. I’m taking care of my heart by trying to create some beauty and joy, something new in a life of responsibilities I didn’t choose. It’s a way of making sure the heart stays strong. Put like that, I’d say she’s right.
Each person has their thing. I believe creativity lies in all of us, some just use it more than others. But ultimately, we all have hardship in our lives. How we respond to it varies, of course, depending on who or where we are at that point. But to me, taking care of our heart, finding space to do the thing that you truly love, even if that feels like work sometimes too, is crucial to heart-health. It’s a discipline, its an exercise, its a mess. But a worthy mess.
Because tomorrow has enough trouble of its own. There are practical, small, active, loving ways to rise above it a few moments at a time. And ultimately, that will be the time your heart thanks you for. At least that’s what I tell myself.
I’m not alone in this.
“Our truest responsibility to the irrationality of the world is to paint or sing or write, for only in such response do we find the truth…When we are writing, or painting, or composing, we are, during the time of creativity, freed from normal restrictions, and are opened to a wider world, where colors are brighter, sounds clearer, and people more wondrously complex than we normally realize.” Madeline L’Engle
“Above all else, guard your heart, for everything you do flows from it.” Proverbs 4:23
They say we’re young and we don’t know
We won’t find out until we grow
Well I don’t know if all that’s true
‘Cause you got me, and baby I got you
Babe
I got you babe
I got you babe
They say our love won’t pay the rent
Before it’s earned, our money’s all been spent
I guess that’s so, we don’t have a plot
But at least I’m sure of all the things we got
Babe
I got you babe
I got you babe
I got flowers in the spring
I got you to wear my ring
And when I’m sad, you’re a clown
And if I get scared, you’re always around
Don’t let them say your hair’s too long
‘Cause I don’t care, with you I can’t go wrong
Then put your little hand in mine
There ain’t no hill or mountain we can’t climb
Babe
I got you babe
I got you babe
I got you to hold my hand
I got you to understand
I got you to walk with me
I got you to talk with me
I got you to kiss goodnight
I got you to hold me tight
I got you, I won’t let go
I got you to love me so
I got you babe
I got you babe
I got you babe
I got you babe
I got you babe
I got you babe
I got you babe
I got you babe
A couple of hours after I posted the previous blog, just as I was leaving to pick up Justine from Kindergarten, I got a call from a nurse at Mesa Verde. She sounded slightly confused herself as she told me that the ambulance company had just called to inform her that Vernon was being transported from dialysis to Fountain Valley Hospital because he was showing “stroke-like symptoms.” Since he hadn’t arrived at the hospital yet, she couldn’t tell me any more than that.
“What do you mean? Stroke-like symptoms? Doesn’t he show those all the time?”
I called the ambulance company, who told me that indeed one of the EMTs had seen some alarming changes in Vernon en route to the care home. I called my mom, who had just left after two hours by Vernon’s side. She hadn’t noticed anything strange, in fact she thought he seemed better than he had on Friday. I called the dialysis center, where I was told they hadn’t seen anything strange either. It was a mystery.
When I got a hold of the ER nurse, I was told they would run some tests and she’d let me know if he would be admitted or not. I decided to stay put in San Clemente, at least until Maki got home from school. A good thing too, as Vernon was discharged within a few hours. He’d received a CT scan and some blood tests. The final diagnosis? General Weakness.
Oh. Really? Gosh, I never would have guessed it.
So that was that drama. I’m glad I didn’t put forth the energy to be caught up in it as it was a non-story, the whole time. As far as what the EMTs saw, I think its the same thing we see with him every other day. Maybe they were new, maybe this particular team had only seen him on his best days so they noticed the difference. I was thankful to them for caring enough to notice, however. For caring enough to be so concerned that they took him to the ER.
So that was today’s adventure. And it all happened, the whole journey happened without my being there at all. In fact, it happened without Vernon knowing a single person he interacted with (except for the EMTs, who he may have just met today, for all I know.) Vernon is becoming more independent by the day!
“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!)
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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